Info

Diabetes Connections | Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
RSS Feed Subscribe in Apple Podcasts
Diabetes Connections | Type 1 Diabetes
2024
March
February
January


2023
December
November
October
September
August
July
June
May
April
March
February
January


2022
December
November
October
September
August
July
June
May
April
March
February
January


2021
December
November
October
September
August
July
June
May
April
March
February
January


2020
December
November
October
September
August
July
June
May
April
March
February
January


2019
December
November
October
September
August
July
June
May
April
March
February
January


2018
December
November
October
September
August
July
June
May
April
March
February
January


2017
December
November
October
September
August
July
June
May
April
March
February
January


2016
December
November
October
September
August
July
June
May
April
March
February
January


2015
December
November
October
September
August
July
June
May


Categories

All Episodes
Archives
Categories
Now displaying: 2021
Feb 11, 2021

Spare a Rose has become an annual tradition in the diabetes community. The idea is simple: this Valentine's Day buy eleven roses, rather than the traditional dozen, and donate the money you save to the campaign. The cost of just that one rose will provide a child with diabetes in an under-resourced country enough insulin for one month.

This interview is from our first Spare a Rose episode back in 2016. Stacey talks to advocates Scott Johnson, Kerri Sparling & Bennet Dunlap. In addition to learning more about he life-saving program, they also play our very first game show.

Find out more and donate to Spare a Rose via Life for a Child

Scott's Diabetes (blog)

Kerri's new book! Rage Bolus

Your Diabetes May Vary - Bennet's blog

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode transcription (untouched by human hands - our computer doesn't speak diabetes very well - check back for the edited/cleaned up transcript!)

Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by insight the breakthrough surprising stories from the history of science. This new podcast connects old stories to what modern day medical researchers are facing.

Announcer 0:18
This is Diabetes Connections with Stacey Simms.

Stacey Simms 0:23
Hello and welcome to one of our classic episodes. I am so glad to have you here I am your host, Stacey Simms. And as always, we aim to educate and inspire about diabetes with a focus on people who use insulin. I want to talk to you about sphere of Rhodes. And if you think you know what that is all about, stay tuned anyway, because I guarantee nobody else has done a podcast like this on this issue all about sphere arose. So what is it? Well, each February since 2013, the diabetes online community all over the world has supported the charity life for a child through the spare aros save a child campaign. It is a very simple idea. Valentine's Day is coming up in the campaign goes all throughout February. But the thinking is that you should send 11 rather than 12 roses to the person that you love on Valentine's Day. And then the money that you saved from that one rose goes to spare a rose, and that one rose will provide a child with diabetes in an under resourced country enough insulin for one month. The math here is pretty simple. One rows equals one month, there are links in the show notes that on the homepage, I'll put them out on social as well with more information and easy ways to donate. I set mine up every year to just kind of keep going every month. It's very simple. And I was really excited way back when for my first spare arose episode on this podcast because I got to talk to three terrific advocates who helped create and nurture the program and continue to do so today. So I'm really excited to bring you this classic episode from 2016, which also features my very first game show on this podcast. We'll get to that in just a moment. But first, this episode of Diabetes Connections is brought to you by inside the breakthrough a new history of science podcasts full of digital stuff. The most recent episode is all about the electric car. I got a sneak peek, sneak Listen, I love this show. It is all about how bad timing killed the electric car. But it's also explaining rural versus urban, and women entering the workforce and there's so much going on in the background of the story. Inside the breakthrough was created by Simon Simon is a group of Canadian researchers dedicated to changing the way we detect treat and even reverse type two diabetes. You can find inside the breakthrough and this latest episode at Diabetes connections.com or just search for it anywhere you listen to podcasts. My guests this week are three people familiar to many of you. They always step up when they're needed. And I'm lucky to call them my friends now. Scott Johnson works at my sugar. He was there back when we spoke for this interview. But I knew him best at the time from his blog, Scott's diabetes. Bennett Dunlap has two children with type one, they're adults now. And since we first spoke, he has been diagnosed with Type two. He's been very open about that. He's been writing about that. And we last spoke when we were on a panel in gosh in November, December just of last year, and he was continuing to share his story. Carrie Sparling was writing six until me every weekday at the time of this interview, she did close the book on that blog not too long ago, she has just published a book of poetry. It's called range bolus. And I will have a link in the show notes I just found out about that I haven't had a chance to order my copy myself. But I will very excited for carry on that. And another note spare arose itself has changed a little bit since this interview, you'll hear us talk about Johnson and Johnson's involved made a few other points that may have changed, but the mission and the need have not changed. So if you can help, please do so. And remember, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Then it Carrie and Scott, welcome to Diabetes Connections.

Unknown Speaker 4:09
Oh, thank you, Stacey. It's

Unknown Speaker 4:10
a pleasure to be here.

Unknown Speaker 4:12
Thanks for having us.

Unknown Speaker 4:13
Yeah, it's a thrill. Thanks,

Stacey Simms 4:14
Kerry. Let's start with you. Tell me a little bit about how spear rose came about.

Kerri Sparling 4:19
I'm sure and I'll probably screw it up just a little tiny bit. So guys feel free to jump in and correct me at any point. But I'm spare Rose was born out of as you had mentioned, the Partnering for diabetes change group kind of got together and tried to come up with an idea and it's not exactly it's actually not at all sponsored by the IDF but their charity life for a child benefits from this program. So what it is like you said, you know, instead of buying the roses, you you really what it actually is, let me just back up a little bit is it's a way for those of us who have access to a lot to acknowledge that privilege and to kind of pop that bubble of privilege and help touch the lives of people outside of that access point. And you know, give a little of what we have two other people living with diabetes. We know what it's like. to miss an insulin injection or under calculate an insulin dose, we know what high blood sugars feel like the idea of having a child suffer from that and potentially die from that is too heartbreaking to even comprehend. So if there's a little bit that we can do to help move, the mission forward of gaining access to insulin for other people around the world, you know, in developing countries, we were like, yeah, this is something we we can't not do this is this is a must. So we all got together and decided that we could try to rally the community around this cause I think it's been very successful. Because again, it's not like one person or one group or one. I don't know, any driving force that that that runs this, it's everybody touched by diabetes has the chance to reach in and impact lives in a really, really big way. It's kind of hard to say no to that.

Stacey Simms 5:45
And Scott was part of the idea here to keep it kind of simple. I mean, you buy food, you can still buy flowers on Valentine's Day, but maybe donate the value of just maybe one or two roses, what that would cost.

Scott Johnson 5:55
Yeah, absolutely. I mean, simplicity is, is really important. When it comes to ideas like this, and I think ideas need to be simple in order for them to take off and and for a lot of people to get behind them and support because they have to be simple to understand for those of us who are really involved in the in the community and involved in diabetes, we understand and get it. But we're we want this message to reach many people who are not necessarily touched by diabetes or not, not that involved in the community. We wanted to reach a much wider audience. And so it needs to be a very simple idea, both simple to a to explain, simple to understand and simple to do as well.

Stacey Simms 6:46
And Bennett, you're very involved in policy, do you think people are still surprised to find that, while we're talking about a specific kind of access here in the US, perhaps that in other parts of the world, the access is is much more limited?

Bennet Dunlap 6:58
You know, I think that maybe they are and maybe it's a good thing that we remind them, but I don't think that anybody is surprised that insulin is hard to get and economies that are struggling. So like Carrie said, this is an opportunity for everybody to join in. Nobody owns sparrows, the community own sparrows, you own sparrows, because you're doing this podcast, God owns it, because he writes about it, whoever jumps on board is a part owner of what we're doing here. And like Scott says, It's super easy to do. So what do you do you go to spare arose.org all one word sparrows. And you click on the big rows at the top of that page. And it's going to take you to a donation page. And you can give through PayPal stupid easy, there's two dropdowns, you can give a one time gift you can give a rose. So you know Valentine's Day, a full bouquet of fancy dancy roses is maybe 60 bucks. So you take thinking give 11 take five bucks, give it the sparrows that's going to help a child stay alive for a month. Or maybe you give monthly, maybe you give a rose every month, that's a full dozen roses over the course of a year, five bucks a month. I mean, I got a Starbucks coffee staring at me. And you know, five bucks a month is way less than what I spend on coffee. And that will keep a child alive for a year. So you go to sparrows.org. either click on the give button or just click on that giant rose on the top there. Click the drop downs for whatever type of donation you want to make. Make the payment through PayPal, boom, you're done. You've helped save a life.

Stacey Simms 8:35
And Carrie has been described as stupid easy, which I think is great. Bennett it really sounds like it's simple. Okay, you know, what has this come to mean to you this is I believe this is the fourth year that you will have tried to get the word out and supported this. Are you seeing change through it? Do you feel like this is something that will continue? Oh, God, I

Kerri Sparling 8:55
will I mean, I I really hope it's something that will continue. But I think that change happens twofold. The first is the most important change, which is every every little donation goes and changes and improves and potentially saves the life of a child that's that is the Paramount thing, the thing that should always be on the forefront. But secondarily, people in the community are becoming more and more aware of what we truly have access to and how lucky we are as a group of people. I mean, here we are sitting on this Skype call. We're using our computers we texted before using our emails, whatever super privileged, very lucky, I don't worry about where my next injection of insulin is coming from, but to think about Hey, what's it like to worry about that what's it like to not have access to something I'm so accustomed to, to recognize how lucky we are, helps people step outside of themselves, help the community kind of evolve and grow in a way that really benefits everybody, not just the people in the community but the people outside of the community who are part of the community, but are benefiting from this campaign. We never meet these people whose lives that were changing but but knowing that we're able to, to make that change. That's really powerful stuff. And I'm hoping that out through this campaign, it helps kind of bring to bloom other ideas from different groups about how to acknowledge what we have and spread the wealth.

Stacey Simms 10:10
Well, that's a really good point. Because Scott, as the point was made here, you know, this is not an idea that has a little tm after it, there's not really a copyright. Right, there isn't a tm, I didn't make that up. Just to just to check. So when we say no one owns this, and the community owns this, Scott, how have you seen that taken off, because it does look like the diabetes community really has embraced it?

Scott Johnson 10:34
Well, I think it's important that that that it is embraced by everybody. And this is an idea that, that needs to be owned and embraced by as many people as possible. If If, if there's someone that tries to own something like this, it just doesn't go as far. So the whole thing is just get it out in, in, owned by owned by everybody owned by anyone that can talk about it or share it, you own it, you You are a part of it in and everybody involved with it, as is so thankful that you are doing what you're doing for it. So yeah.

Stacey Simms 11:12
I'm curious to you know, the diabetes online community is a very big community. But it also seems very small in that we all kind of get to know each other. And you know, you really are many people are very accessible on Twitter, or you can you can reach them. I guess what I'm getting to and Carrie, let me read this to you is, how did you all come up with this? We talked about the you Partnering for diabetes change? What is that? Did you all sit around a table and Scott had his diet coke? And you guys kind of talk about it that way? How did it come about?

Kerri Sparling 11:43
The sparrows idea itself?

Unknown Speaker 11:45
Yes,

Kerri Sparling 11:46
well, this, the Partnering for diabetes change coalition is a group of people who were brought together with assistance from Johnson and Johnson. So we do have to give them a huge nod because they, they don't own this project. But they've helped in part to shepherd it. And I'm really proud of of the investment that they've made in bringing the advocates together so that we could incubate this kind of idea, the idea itself, and Jeff is going to hate me for saying this. But the idea was actually born from Jeff Hitchcock, who runs the children with diabetes group. And it was just latched on to immediately by everybody in the room because it didn't serve an agenda. It didn't serve anybody's ego. It wasn't this Oh, look at me sort of thing. It was more this is actual social media for social good. This is a powerful thing. And everybody just took it and, and ran with it. So it was it was an awesome meeting. And what's come of that is, like everyone has mentioned already, nobody owns it. So this one idea, which was incubated by the group has been grabbed by the community of people living with diabetes, and beyond the diabetes community, into the patient community, and to people who work for diabetes companies. I mean, there's a lot of potential for this idea to spread. And it's a good idea to spread.

Stacey Simms 12:51
And better give me your perspective, because as I mentioned, you work a lot now, with policy and that's been your interest for a while, put this in perspective for us in terms of how much easier perhaps something like spare Rose is to create change and to have an actual impact, as opposed to trying to make change happen legislatively? Well,

Bennet Dunlap 13:12
you know, I'll tell you, I think that spirit Rose is the foundation of other change. I will tell you flat out that when we did the strip safely campaign, I went took the notes of how we created sparrows and just replayed them with different branding. So, you know, you mentioned that the community is large, but it feels small, I think the community is large, but it feels intimate. And what we can do with that intimacy is ask each other to help. And sparrows, to me is the very foundation of helping because like Carrie said, You're helping people you don't know you'll never see them. If you're super lucky, maybe you'll be at an event where IDF shows some of the art that these kids make, you know, and it's typical refrigerator art. In it, you see a little bit of an image of a kid that realizes they're staying alive because they're getting this magic Insulet from somebody. And that to me is the key is that we do things for others. We do things for people that will never see and then eventually we can do things for policy. But you know, if we're not living for others, we're never going to get to the policy stuff. So to me sparrows is foundational in everything we do. It's all about other people and taking the gifts you have and sharing them.

Scott Johnson 14:30
It's you know, there's it's important to know that any anything helps, right like, this has been a really wonderful idea. We've seen it go a great ways so far. But if if all you can do is is one rows, that's a tremendous help before you can do a spread if you can't do one rows, but you can help spread the message. That's also a tremendous help like don't undervalue whatever You can do to help this cause it all, it all goes a very long way.

Bennet Dunlap 15:05
You know? Absolutely, it's about doing what you can. And when we track what happens, we track how many people have given, doesn't matter how much you give that that you give is important to us. And if you can find five bucks, that's great and echo what Kerry said, you know, we really fortunate that the J and J brought us all and put us all in a room and then step back and, and let ideas flow. And I agree with what carries it Jeff came up with this idea and we jumped all over it hijack the rest of the agenda and spent the day figuring out how to make this work. But it isn't just j&j to get help. So if you have a business and you want to do a fun morale booster in February, let's face it, February in North America sucks. It's cold, rainy, and awful. or snowy and awful. So have a little campaign in your office put a little sign up by the coffee pot. It could be you know, your your local HVC vendor, it could be another company in the industry. Whatever this isn't a company's it isn't a person. It's everybody's

Stacey Simms 16:12
more info on all of this at Diabetes connections.com. And I really hope you find it in your heart to learn more and to donate spare rose is a great cause. And we're going to do our best to make our own donations with something fun today. If you're familiar with Wait, don't tell me the NPR Quiz Show. This next segment is with full credit. And full apologies to those fine, folks. We're gonna have the Diabetes Connections version of bluff the listener and a News Quiz. If you're not familiar with Wait, wait, don't tell me. If this will still be fun. It's just kind of kind of silly. All right, so we need to welcome a listener. And I'm so excited to welcome Laura Duvall. She is here in Charlotte, and she's a published writer, founder of duelled marketing group. Laura, thanks for being here.

Unknown Speaker 17:01
Absolutely. Thanks for having me. I'm excited.

Stacey Simms 17:04
Laura, you have type 1 diabetes, right? Tell me a little bit about about you.

Unknown Speaker 17:10
Oh, absolutely. So I was diagnosed with Type One Diabetes, when I was 10 years old. And have really benefited I think over the last 20 years, 25 years or so with the new technology in play for diabetics. So I got a pump when I was in high school that really allowed me to kind of play sports and go out with my friends. And about two years ago, I got one of the Dexcom sensors, which has totally changed my world. I'm a big runner. So I have done quite a few half marathons, was actually training to run the Disney marathon this coming weekend I got injured. But the technology that's available for diabetics now is really amazing. I mean, it just gives you confidence that, you know, you can be an active and force and you're not having to test your blood sugar 800 times a day. So you know, I have had really benefited I think from the advances in technology with diabetes and you know, love love being involved in the starlight community and then the health and wellness area. I've worked for a health care system for about eight years in marketing and and now have stepped out on my own to do the same thing. So I'm really excited to be a part of today.

Stacey Simms 18:27
Excellent. Well, thank you so much for joining us. And you, you set this next segment up perfectly talking about new technology, because every year, there are lots of announcements of diabetes, product breakthroughs, and some are useful and very helpful and they change our lives for the better is easy, we're just talking about, but some make a splash never really take off. And others are just abject failures, like the ones you're going to hear about. Our guests are going to relate a story of a failed diabetes product. One of these products is for real it made it to market, but the other two are products only of our imagination. Laura, if you can guess which is the real deal. And Bennett, Carrie and Scott are going to do their best to fool you. Diabetes Connections will make a $50 donation to spare rose in your name. Are you ready?

Unknown Speaker 19:18
I'm ready. All right.

Stacey Simms 19:19
Carrie, are you set? Why don't you go first?

Unknown Speaker 19:22
All right,

Benny 19:23
let me sell it to you.

Kerri Sparling 19:24
So tech savvy type one teens have created a new app for your smartphone or tablet. It's called selfish and it's aimed at those whose parents use remote monitoring software like you know, Dexcom share nightscout. So the app creates a fake book kind of reasonable blood glucose graph, which is that beam back to the parents device. So when they look at their phone, they're like, Oh, good. My kid is doing what they're supposed to be doing. And it also includes text notifications, like yes, I checked or Yes, I have my neater however the Creator is being teenagers, you know how teenagers are. They couldn't resist being kinda like slightly jerk faces. So an early version of the app included hidden jokes and a few inappropriate It references to Nick Jonas as most things do. Parents nearly half as stupid as teenagers think they are picked up that something might not be exactly right after the first few references to this Disney Channel though Daya booty which is they give you a weird even saying that out loud.

Unknown Speaker 20:14
But the tech

Kerri Sparling 20:15
savvy parents have since created an override app and are on the lookout for updates. Not everybody

Stacey Simms 20:21
says diabesity carry that's not in your everyday vernacular there. Because that's

Kerri Sparling 20:25
what that is my wheelhouse, but I just felt weird saying it to all of you.

Stacey Simms 20:29
Okay, so the selfish app created by teens is our is our first story there. Bennett. Let's hear what you have.

Bennet Dunlap 20:39
Okay, well, I'm going to tell you about this great app. It's called the Neuchatel food analyzer. And it was going to be the answer for counting carbs on the go. You take a quick picture of your food and your phone. It delivers it the live operators at Neuchatel. And within three minutes, they promised an accurate within plus or minus 20%. So your judgment on accuracy may vary. carb count, users can also pay for upgraded access to more food information as well as ingredients and warnings for gluten allergens. How ever the product never made it out of beta testing, because that's when users found out that each meal came with snarky comments like, oh, that salad looks really delicious, good choice, or in my case, boom. Do you really need to eat that slice of cheesecake? Or Didn't you have a hamburger yesterday, further investigation showed that not only were the people behind this app particularly judgmental, they were also a division of a large Health Insurance Group. In other words, the neutral app would tell on you giving your insurance company valuable information about your eating habits. And once the word got out, the community went after it and it was scrapped.

Stacey Simms 21:50
Bennett's telling us about the nutrit L Food app which basically told on the user and their eating habits to health insurance. Scott, what do you have?

Scott Johnson 22:00
All right. Imagine using a laser to painlessly perforate your skin to get a drop of blood instead of having to use a metal needle. A company called a cell robotics created the laser net, which used laser energy to penetrate the skin. testing showed that adequate adequately trained patients could perform finger pinpricks with the laser device as easily and accurately as with land sets. But the laser required some difficult maintenance and instruction. And there was a noticeable odor of burning flesh with each test. Some user said that was a bit of a turn off, the price may have also kept this one from taking off. One LaserJet device cost about $500. Maybe because you could get close to a lifetime supply of regular lancets for that the laser printer is no longer available for purchase.

Stacey Simms 23:08
All right, Laura, your products are the lay set, which gave you great accuracy without having to poke your finger with a needle however, the smell of burning flesh turns people off the Nutri Patel health food app, which told on you or the selfish up which was developed by teenagers to fool their parents who use share and nightscout which one is real, which one is the real product that we did makeup

Unknown Speaker 23:36
was easy. As much as I would love to say it was the diet booty. I'm gonna go with number two, the neutral cow,

Stacey Simms 23:46
then it is the neutral tell a real deal.

Bennet Dunlap 23:49
I know it's fake.

Unknown Speaker 23:53
But I want

Bennet Dunlap 23:54
you to tell and diabetes, you're teaming up to sugars, but fake your carb counts.

Stacey Simms 24:02
We're still gonna make the donation to spare Rosie your name because you were such a good sport. And this was so funny. But yeah, the lace set. Scott, did you know about that product before you read about that?

Scott Johnson 24:16
A little bit. But it's like one of the many things that we often hear about as people living with diabetes where you know, these things come to market and you're like, Okay, this sounds so ridiculous that I'm just not going to even give it much brain bandwidth. So yeah,

Stacey Simms 24:34
yeah. But it was a real product. I don't know how far along because it was it was I think it was a little bit before my time in the diabetes community. Laura, it sounded like you might have heard of it when we mentioned it again.

Unknown Speaker 24:45
Yeah, it does sound familiar, something I may have read about. I think I just in my mind, I was thinking you know, the nature style app seems just like something that I could be going to market and just being a terrible disaster. I'll tell you what's funny. With my gut,

Unknown Speaker 25:00
yeah, well,

Stacey Simms 25:01
that's okay. But what's funny to guys is, I just saw this week that I'm not a app that hopefully reports back to anybody else. But that there are a few camera like devices that claim to show the nutritional information in your food. I mean, I think that's awesome. Yeah, very interesting stuff. I'm not sure how much we you know, we'd have to see some studies to trust it. But that That to me is amazing. Amazing. Absolutely. Well, Laura, thank you so much for playing as I said, we're still gonna make the donation to spare rose in your name. We really appreciate you taking part and thanks again.

Bennet Dunlap 25:35
Thanks, Laura.

Unknown Speaker 25:41
Scott, yeah. Oh, sorry. I

Kerri Sparling 25:43
was gonna say I love the way you read yours. Because the entire time every time you said laser, I kept picturing Dr. Evil.

Unknown Speaker 25:52
The laser,

Unknown Speaker 25:54
sir. Awesome. I just

Scott Johnson 25:56
had this, this image of like a waft of smoke coming up from her finger. You know.

Unknown Speaker 26:07
You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms 26:13
And our last segment today, we want to give you guys a little bit of a quiz. I don't think you can really prepare for this. So I hope you didn't study too hard. But as we mentioned, Kerry writes the award winning blog six until me, and the title refers to a piece that she wrote from the point of view of diabetes, which came into her life at age six, six until me and I'll link that up at Diabetes, Connections calm, I'd urge you to read it. But today, we're going to find out how much you will know about diabetes, and years ending in six. For this quiz. You'll hear a fact about diabetes and choose which year it happened. I'm calling it which six will it be? as well,

Kerri Sparling 26:56
I after I feel like I need to jump in because I've already screwed up the quiz. I was seven when I was diagnosed, I was using poetic license. I didn't think about SEO and I just now screwed up the entire podcast. So I'm sorry. My symptoms were when I was six,

Unknown Speaker 27:13
but the actual diagnosis was seven. I'm gonna hang up now. Even if you're a really good person, I really like you.

Stacey Simms 27:25
Thank you very much. I enjoyed the wordplay. So we're keeping it which six will it be? But I also like the facts. So that's great. All right. Each guest is going to get two questions. If a total of four of the six are answered correctly, we will make another $50 donation in a listeners name. In fact, carry might be paying that man, but we're gonna make a $50 donation to sparrows in elicitors name. Alright, so here we go. Which six will it be? next year? We're going to rename this sucker and we'll go from there. Alright, carry on. We're gonna start with you. The distinction? I know pressure, right? The distinction between what is now known as Type One Diabetes and type two diabetes was first clearly made and published. In what year 1876 1906 or 1930? Things quizzes

Unknown Speaker 28:20
I totally didn't study on. I'm

Unknown Speaker 28:22
going to go with,

Kerri Sparling 28:22
would you say 1936?

Unknown Speaker 28:24
Was that the last one?

Unknown Speaker 28:26
That's the one I'm using.

Unknown Speaker 28:28
Right? Correct. All right.

Unknown Speaker 28:30
All right.

Stacey Simms 28:33
Question number two, Scott. This is for you. Insulin, crystallization improved its purity and opened the door to the time action profiles such as extended insulin in what year was Insulet first crystallized? 1926 1946 or 1976?

Unknown Speaker 28:49
Hmm.

Scott Johnson 28:51
I'm gonna save the middle. The middle option.

Unknown Speaker 28:54
Oh, I'm

Stacey Simms 28:55
sorry. It's not 1946 it was 1926 Wow. Okay. 26. Right. Okay. Okay, Bennett, this one's for you. In what year did Eliot Jocelyn published the first edition of the treatment of diabetes at 96 1916 or 1936 96? I'm sorry, that's incorrect. 1916 is the incident we're

Bennet Dunlap 29:21
dragging the team down. We're just

Stacey Simms 29:24
which is kind of crazy because the you know, insulin wasn't commercially available until 1923. But that was when it was first published or carried

Unknown Speaker 29:33
out Gary.

Stacey Simms 29:38
When was the When was the first successful pink I've lost all control. When was the first successful pancreas transplant 1946 1966 or 1986. I'm sorry. Oh,

Unknown Speaker 29:51
third guess

Stacey Simms 29:53
that's right. Also could have been 1967. I guess. We got out When was the first wearable insulin pump invented? 1956 1966 or 1976. So,

Scott Johnson 30:08
so I'm thinking about, like my mind is, is saying, define wearable? And I'm picturing that. That photo. We've all seen of that guy with that gnarly backpack.

Stacey Simms 30:22
Oh, yeah, no, I don't you know what I have to, I'd have to check my notes. But I was talking really slowly there when I said, 1970s. I'm gonna

Scott Johnson 30:32
say 1976. Then

Stacey Simms 30:37
very nicely done. And I will, I will look that up and stick it in the show notes. Because I was thinking of the backpack guy too. Yeah, that's crazy. But I'm not quite sure what they I think by wearable they mean, like wearable with that behind your back. Portable, maybe even more so than that. Okay. And Ben at our last, I haven't been keeping track of who got what, right. 123 Bennett? When was NPH insulin released? 1946 1956 or 1966 56?

Unknown Speaker 31:05
Yeah,

Stacey Simms 31:10
I'm sorry. 1946. I should have I should have been a little bit more clear there, too. Okay, I think you guys got to share two and a half.

Unknown Speaker 31:20
All right.

Bennet Dunlap 31:22
This is the sixth quiz. And the only ones that count her from her because her podcast is six until me.

Unknown Speaker 31:28
Yeah, but I only got one, right. And also, I don't have a podcast.

Stacey Simms 31:37
I think we just need to move along. And we will make the $50 donation to spare rows. And I might give you each $50 to not have this.

Bennet Dunlap 31:45
So I think what's important to take away from this is the diabetes is hard. Even the history is hard.

Stacey Simms 31:53
And the numbers are always hard. It's not

Bennet Dunlap 31:55
just a numbers game.

Stacey Simms 31:58
Oh, my goodness. Well, thanks for playing along with that. That was quite ridiculous. And it was hard.

Unknown Speaker 32:08
Oh, you're so positive. He's the nicest. Okay,

Stacey Simms 32:14
so next year, which six? Will it be will turn into something with seven, but we'll figure it out

Bennet Dunlap 32:20
studying next year?

Stacey Simms 32:21
All right. It's kind of goofy. But it's all for a good cause. And I wish you all so well, this year with spare rose, I know it's gonna be a really big success. And it has been for the last few years. Anything else that you all want to add any other places that you're going to be appearing?

Scott Johnson 32:36
Well, I think Stacy, we we really want to thank you for helping spread the sparrows message that's really great of you and will go a long way towards helping the cause. And we really, really appreciate that. So thank you.

Unknown Speaker 32:50
Yeah,

Kerri Sparling 32:51
I'll echo that. And also, I mean, I love that you you picked spare rose to kind of run with as far as raising awareness and raising some money. So I'm hoping that other organizations follow you're very, very good lead and and jump in with this. And it would be great to have people in the diabetes community and the broader patient community. Be part of this, this thing that's so important to us,

Stacey Simms 33:12
Ben, any last words?

Bennet Dunlap 33:13
No, not at all, at all.

Stacey Simms 33:15
Excellent. All right. Well, once again, thank you all so very much for joining me Carrie Sparling. Scott Johnson Bennett, Dunlap, I appreciate your time and what you're doing for sparrows, end of the diabetes community. It's always great to talk to you. And we'll be in touch. I'm sure that there'll be a lot more sparrows news in the next two weeks. Thanks for being with me.

Unknown Speaker 33:34
Thank you, Stacey.

Unknown Speaker 33:41
You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms 33:46
If you would like to help or find out more about spare arose very easy. Just go to Diabetes connections.com and click on this episode homepage. As I said, I'll put some stuff out on social and I will link up to Karis book and Bennett's blog and Scott's blog as well. For more information. I'm going to also link you up to renza. Should Billy his blog because she is really taking the lead now I'm getting the word out about spear rose. We've had her on the show for other issues as well. But she wrote recently that in the eight years the campaign is run, they've raised more than $261,000. This is not a big corporate campaign. This is individual donations from, as they say on PBS, people like you, but I mean all kidding aside, that is 52,347 roses, which means that a whole year's worth of insulin has been provided to almost 4400 children and young people with diabetes and under resourced countries. renza wrote, I still get goosebumps just thinking about that. And renza I share that sentiment as well. Thank you for putting that together. Thank you for continuing to bang the drum for sparrows and get the message out and thank you all for donating look very simple as they said in the interview and I'm glad we were able to have some fun with it. But it is such a small thing that you can do the chemic such a serious difference. So if you can please help. And sometimes helping is just spreading the word I understand that everybody has the resources to give or your money is already earmarked for things. If you can share the Word that would be awesome. Thank you so much to my editor, john Buchanan's for audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

Benny 35:29
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged

Transcribed by https://otter.ai

Feb 9, 2021

Chris Stocker is a well-known voice from the early Diabetes Online Community, launching his blog about life with type 1 diabetes called Life of a Diabetic in 2007. In 2019, he stepped back a bit from the DOC with good reason: his daughter, four years old at the time, had just been diagnosed as well.

Now, two years later, Chris is jumping back into the online community via Instagram and a YouTube channel. He talks to Stacey about what it's been like for his family to adjust to their new situation. He also has a great message for any men who live with T1D.

In Tell Me Something Good, one of the scientists behind one of the COVID vaccine.. is one of us!

And some new books are our for the littlest ones of us..

The Adventures of Captain Lantus

Little Shots for Little Tots

When I Go Low: A Diabetes Picture Book 

Friends for Life information 

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

 

 

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario Health – manage your blood glucose levels increase your possibilities by Gvoke Hypopen, the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week a well known voice in the early diabetes online community stepped back for a bit stopping his blog and his brand new podcast when his daughter at age four was diagnosed with type one herself.

 

Chris Stocker  0:39

Do you want to help me do it? Do you want to help me I you know decorate my infusion sets and things like that. So we shared those common bonds and that's how we looked at it from the day of diagnosis was Hey, you're like daddy now.

 

Stacey Simms  0:51

It's been two years since Chris Stocker’s  daughter's diagnosis, and he's jumping back into the online community. Chris shares his story as a dad of a child with T1Dwho lives with it himself

in Tell me something good. One of the scientists behind one of the COVID vaccines is one of us and some new books for the littlest ones of us. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. We aim to educate and inspire about diabetes with an emphasis on people who use insulin aim host Stacey Simms, my son Benny was diagnosed with type one right before he turned to more than 14 years ago. My husband lives with type two diabetes. You know, I started blogging just after Benny's diagnosis. And that blog, which I eventually called off the dial led me to the DOC the diabetes online community at that time, and this is 2007. When I started, it was basically blogs and some online chat rooms. And you know, gradually social media exploded and everything changed to what it is now shorter posts, influencers, more podcasts, that sort of thing.

The Twitter chat remains DSMA on Wednesdays, if you're not familiar with that, that is a 10 year old now more than 10 year old chat on Twitter, I'll put a link in the show notes, but it's just hashtag DSMA Wednesday evenings at 9pm. Eastern for anybody in the diabetes community we'd like to give it a plug it's not separated by type or if you're a parent or a person with type one. And that's one of the ways that I first remember meeting Chris stocker and it was great to talk to him this week for so many reasons, but it really brought me right back to those early days. You know, when we had diabetes blog we can you know, to feel like we're finding all these really to me amazing, cool people in my computer, which depending on your age, either sounds ridiculous or you know, right on you, you know what I'm talking about.

But before we get to Chris, I do want to share a Twitter post that I was tagged in this is self serving, but I just I have to share it. A gentleman named Hugh Stimson retweeted my episode release about Lily and Ypsomed and my conversation with with Mike Mason from Lilly diabetes all about that. And he wrote, “I wish political journalists asked follow up questions, the way Stacey Simms asks health device executives follow up questions.” Whew. Thank you so much for writing that. It's hard to describe what that means to me. And and compliments are always nice. But that right there is why I started the show back in 2015. I would listen to podcasts. And I'd be yelling back at the hosts, I'd be asking my own questions. I'd be like, follow up on that. He didn't ask. You know, look, radio people are interesting. And well, I am really glad to be built like this. It is an odd thing sometimes. But I'm glad it came in handy. I'm glad it helped. And I'm really glad that you feel like I'm doing a service by asking those questions and trying, you know, sometimes we don't get answers, but you got to ask. So thanks again. I really appreciate it.

All right, Chris Stocker  in just a moment. But first, Diabetes Connections is brought to you by Dario health. And you know, one of the things that makes diabetes management difficult for us. It just really annoys me and annoys Benny, it isn't actually the big picture stuff. It is all the little tasks adding up, you know, are you sick or running out of strips? Do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to mydario.com forward slash Diabetes Connections.

Chris Stocker’s  blog back in the day was called life of a diabetic and he wrote about everything from his diagnosis as a college student in 2009. To Day in the Life stuff to product reviews to what dragged him down and made him mad and what lifted him up. When his oldest daughter was diagnosed just before she turned four. Chris felt like he had to pull back and face this challenge before venturing back online in such a public way. But he never really left the community. And I think dads and men with type one as you listen, there is really great advice here for you in terms of support and asking for help.

Chris, welcome to the show. I'm excited to talk to you. I feel like we have talked before, but it's only been on Twitter and Social Media. Thanks for jumping on.

 

Chris Stocker  5:19

No problem. I'm definitely happy and honored to be a guest here.

 

Stacey Simms  5:24

Well, you're a podcast pro and a YouTube Pro. So this should be fun. But we do have a lot to talk about. Let's just start at the beginning for you. Because your diagnosis story happened when you were in college. Right? You were 19. Tell us about that.

 

Chris Stocker  5:35

Yeah. So I was I was a freshman in college, I was playing football at King's College up in Wilkes Barre, and the season was over. And I just was I was working out I was losing a ton of weight. I was drinking a lot of Gatorade and water. So I was urinating quite frequently. And I just thought I was losing weight because I was working out. And then this one night, I didn't have an appetite. I started getting sick all day long. And I ended up in the emergency room with 858 blood sugar.

 

Stacey Simms  6:05

What year was that? If you don't mind me asking.

 

Chris Stocker  6:07

That was in 2000. Wow. 2004.

 

Stacey Simms  6:10

What was the diagnosis process? Like? Did they you as a young adult like that? Did they believe you had type one? Was it an okay, diagnosis?

 

Chris Stocker  6:17

Yeah, it was. I honestly don't remember too much of it. Because I was kind of in in like a foggy state. My mom has worked at a hospital for almost 40 years. She took me to her hospital. So of course, we got the VIP treatment went right into the ER. And, you know, they took labs, and immediately The doctor came in and was like, You have type 1 diabetes. So there was no real question or debating anything whatsoever. Then I remember seeing the on site endocrinologist, probably I think it was that night. This was probably around 2am. So yeah, there was no discussion ever about whether it was type one or or another type of diabetes.

 

Stacey Simms  6:56

And what did they start you want? You immediately put on? I think 2004 elantas was around for adults, but not necessarily for kids. Like what what was your beginning entry into diabetes tree?

 

Chris Stocker  7:07

Yes, my very first night home, I can remember almost exactly the ratios and everything. I was taking 14 units Atlantis at night, the carb ratio was about 51 to 5015 to one. And that was Yeah, I was on lantis. And I think I started on probably either human log or no blog at that time. I can't remember that. But I didn't know anything about pumps or was never even brought up to me at that point in 2004. Either.

 

Unknown Speaker  7:36

Did you go back to college,

 

Chris Stocker  7:37

I I was not able to go back to King's College at that time. So I stayed home for a year I went to community college. And then I got this bright, awesome idea that I wanted to go to college away from Pennsylvania. And so I decided to go to Boca Raton, Florida and finish up school at Florida Atlantic University. So not only was I only a year or so maybe a year and a half, after diagnosis, I was then telling my mom that I was going about 1200 miles away to go to college. So it was definitely a rough conversation to have with her for sure.

 

Stacey Simms  8:15

Okay, well, it is sometime later, let's say right, it's, you know, we know you did pretty well in college, I assume. Can you give us parents the reassurance that you know, you You did? Okay, and that was the right move for you?

 

Chris Stocker  8:27

Yes, I mean, it definitely forced me to really grow up pretty quickly. I mean, I was 20 by the time I went there, but I was a little bit more mature than a lot of my, you know, my roommates and a lot of my classmates, because I was managing this disease pretty much by myself. I had no family, no friends down there. So it was really it was on me, I was in constant communication with my diabetes educator up here in Pennsylvania. So I was able to communicate via email with them quite often. So you know, there were some times where I had some pretty high blood sugars. I did actually end up at the ER one night, because I was getting my insulin through the school on campus pharmacy, which was not open on the weekends. And I thought that I could go from Saturday afternoon till Monday morning with just about 10 units of insulin which I use in one meal. So I actually ended up in the ER, I had met my girlfriend who's now my wife down there. And this was all new to her too. And she ended up taking me to the hospital and think I was probably up in the five 600 range. And then that was an interesting phone call to my mother as well. Who at that time, then flew down and did the motherly thing and came down and spent a few days down there with me.

 

Stacey Simms  9:49

I'm wondering though, I mean, my kids, my daughter's in college far away. Then he is a sophomore in high school and we're starting to talk about college and I've told him you know, you can go wherever you want. I'd love for him to stay next year. We're at least in this state, but I doubt that he will. I'm curious looking back What made you want to go so far away? I mean, do you feel I don't wanna put words your mouth I wonder like, did you want to prove something to yourself? Did you just love that school always wanted to go to Florida like why from there's so many great schools in that Pennsylvania northeast corner?

 

Chris Stocker  10:16

The weather? Yeah. Yeah. So I was playing football. I played football my whole life. I was playing football, I kings, I actually left the football team because I had no energy. I couldn't I didn't want to work out anymore. Later to find out that that was diabetes related. And I just said, You know what, like, I don't wanna play football anymore. I just want to go somewhere that's totally different than than where I grew up. I love Pennsylvania. I'm actually back here now. But I wanted to go somewhere totally different. And I started looking at colleges. I'd always wanted to go to UNC Greensboro. I don't know why, but I always wanted to go there. And I started looking online. And one day I was watching a tennis tournament, and Andy Roddick was my favorite tennis player and it popped up that he lived in Boca Raton. So I went on the internet, looked up colleges in Boca Raton, I found Florida Atlantic and I fell in love with their website. So I always used to joke that I have Andy Roddick to thank for meeting my wife. Even though I've never met Andy Roddick, and Andy Radek has no idea who I am.

 

Stacey Simms  11:22

Well, you wouldn't be the first to go to college because somebody either lived in that town or went to that town that you admired. But that's a great story. I love it. I want to talk about the diabetes online community, you were a very big part of this. You still are. But there was this time when there were so many bloggers and we were all just finding each other on Twitter. But I at first like to skip ahead in your story to when your daughter was diagnosed. I think that's such a fear of so many people I know who are adults with type one. But it does happen of course and you do deal with it. Do you mind sharing her story too. When was she diagnosed?

 

Chris Stocker  11:56

She was we're actually coming up on her two years, in about a week and a half year so she was diagnosed on February 12 2019 in the middle of a snowstorm. And that was when we decided to take her to the ER was when we had about eight inches of snow on the ground.

 

Stacey Simms  12:19

Right back to Chris in just a moment Diabetes Connections is brought to you by g Bo hypo pin. And almost everyone who takes insulin has experienced a low blood sugar. And that can be scary. A very low blood sugar is really scary. And that's where GMO hypo pen comes in. It's the first auto injector to treat very low blood sugar Jeeva hypo pen is pre mixed and it is ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give g vote correctly. I'm so glad to have something new, find out more go to Diabetes connections.com and click on the G book logo. g Vox shouldn't be used in patients with pheochromocytoma or insulinoma. Visit chivo glucagon.com slash brisk. Now back to my conversation with Chris about the night his daughter was diagnosed. Had you suspected I mean I, you know I don't wanna get too personal. But

 

Chris Stocker  13:14

the signs were there. And I feel that I had maybe been living in denial for a little bit. It is something that I had thought about every single day from the day my wife told me she was pregnant, that that what if scenario and it was something that I talked about a little bit, but I didn't talk about it a lot because I felt too vulnerable, I guess. So I shared that because I knew I would not be the only one that had those feelings. But when I would see her, she was potty trained. So she was waking up probably three or four times a night asking for water and having to go to the bathroom. And I really started to see a change in how frequently she was going to the bathroom. And then that kind of was going on for you know, a couple of nights. And then just one night, I just had a gut feeling. And I said well let's pull out my meter. Let's check her so you know, of course, she didn't want that to happen. And you know, I can remember just looking at the meter. The number was in the 250s but I just remember looking at the meter and then just knowing and just knew and just being just crushed. So it was it was something that I had kind of mentally prepared for but it's just one of those things I don't think you're ever prepared. You know you think you might be but it's just you know, it was just a crushing feeling. But then the dad and the type one in me kind of just said hey, it is what it is. We just got to do it. And you know we took it to the hospital. I'm amazed by how she handled the entire thing. It was just unbelievable being in a in an ambulance to go from the ER on hospital to the pediatric unit at another hospital. I mean she loved that still talks about it to this day. Really

 

Stacey Simms  14:57

what did she do what she did like she was feeling Okay, and she was excited.

 

Chris Stocker  15:01

Yes. So she didn't really know what was going on exactly our local hospital, which was, you know, a few blocks away, they didn't have a pediatric unit. So it's a system hospital. So they just, you know, put her and my wife in the ambulance and took them to the hospital that had a pediatric unit for her. So she got to watch TV pretty much all day long. She got to play with toys in there. So it was different, you know, getting getting those first round the labs done and putting her into the burrito as they called, it was probably her only bad memory of the entire process. So she definitely still talks about those days, even, you know, she was a month away from turning four. What is the burrito? So sorry, later down on the table to draw labs and freaking out? Yeah, so they kind of, you know, they put like a weighted almost like a weighted blanket over her to kind of strap or in and they just called it a burrito, I guess to make it sound not so terrifying.

 

Stacey Simms  16:00

How long did you stay in the hospital? And then what did you have to do? I assume you know, your you and your wife are pretty well educated about diabetes. So I don't know that you needed much of that. But it's different when it's your child,

 

Chris Stocker  16:09

I would assume? Yeah, it's totally different. And we were in the hospital for about two and a half, maybe three days, I do know that they kind of rushed us through the process. Because when we first went there, I basically just said, Hey, listen, I have type one. I know what it's like, you know, I know what to do. But I don't have a child with it. So I know I need to, you know, relearn some things, and things are going to be a little different. But the, you know, the staff there and the whole diabetes team was very helpful. And really, they directed most of the education, most of the conversations towards my wife, which was something that we kind of asked them to do, because I really, you know, my wife had lived with me for 14 years before that. But my diabetes was kind of just my own diabetes, I didn't ask her to take an active part and help managing if she knew if I was low to give me Skittles, she knew if I was high, I needed some more insulin, but she knew that I counted while I was supposed to be counting cards, but she knew the basics, but really, she needed to start, you know, learning. What is basal? And what is this? And what is that? So a lot of that education was geared towards her. And I think it was, you know, very helpful, not just for her, but also for me, as somebody that was living with it for at that time, I guess it was 15 years, then that there was like a refresher course that I that I needed. Because I was in my I was in my my own habits. I'm in my own ways. And it was it was really good to kind of take a step back and relook at how you know, what is diabetes one on one, you know, what is the right way to kind of do some of these things.

 

Stacey Simms  17:48

I'm picturing that, you know, your daughter has watched you do this, even if you haven't been doing it in front of her the whole time and everything that this is now something that while that's not great, but she can share with her father,

 

Chris Stocker  17:59

absolutely. 100%. And that's exactly how I looked at it was, how can I make this easier for her and just like a parent with anything, my initial instincts were, what can I do to make this better for my child, and it was just instantly that put on a smile for her show her that my diabetes is not a burden on me, it's not something that I don't like doing. So I made sure that when I had to check my sugar, or she, we were going to check our sugar, I would do mine also. And you know, now we share some of those same things. So it's like, oh, when when I have to change out my CGM, you know, my sensors is, do you want to help me do it? Do you want to help me, you know, decorate my my infusion sets and things like that. So we share those common bonds. And that's how we looked at it from the day of diagnosis, as well as Hey, you're like, Daddy, now you and Daddy, we both have diabetes. And my niece was actually diagnosed about two years before my daughter. So that was a whole whole nother thing of trying to you know, help my brother and my sister in law with with dealing with that diagnosis. So, you know, now she shared that with her cousin as well. So it was kind of something that, you know, with her daddy having in it, her cousin having it that that she was able to not. And also she didn't at that time really even know what it meant to have diabetes. She just she thought it was just cool that now she has daddy. So it was definitely the way that we decided to kind of take is to be able to share that bond with her. And that's what we have in common.

 

Stacey Simms  19:23

Do you use the same technology as each other?

 

Chris Stocker  19:25

We do. We do. Now, we did it at the time, but the same CGM and we both use the same insulin pumps,

 

Stacey Simms  19:32

you don't have to answer this but you know when you say to your your daughter and this is what I think we would all want to say to a newly diagnosed child right? It's not going to be a burden. You can do this it's okay to have diabetes. And I think for me as the adult with my son ignorance was a little bit of bliss, right? You know, you can do this it's gonna be okay and it's not gonna stop you. You can play sports, you know, you can. Now they can fly planes, right? You can you can do what you want to do. But for somebody with type one who's lived with it for as long as you have Do you know that it is a burden? Sometimes you know that it is really hard. And I know this is not something you're gonna take, you're now, you know, almost six year old decided to Hey, by the way, you know, I mean these are conversations from they're much older,

 

Chris Stocker  20:10

we've had some conversations I mean, as much of a conversation as you can have with an almost six year old about living a life with diabetes. So we really kind of talked about it in Scituate, you know, take today, for example, it's been snowing for almost three days, we were out in the snow. And I can I already know, as soon as we go to that, in that snow, she's going low, it's just 100% guaranteed every single time. So we had to stop playing in the snow. So we could drink juice. And you know, she doesn't want to stop playing. So we try to you know, just let her know that, hey, just because you know, the other kids in the neighborhood happen, you know, they're still out playing and whatnot, we just need to take a little extra precaution steps here and just sit down and have a juice and you know, we frame it that day, they don't get to have a juice right now, right? You're the one having giggles and juice. So you know, but it's just you know, so we use those kind of, it usually comes up during Lowe's, where we may say like, hey, let's let's settle down for a little bit. Let's not run around or play rough right? Now let's just sit down. And, you know, we'll play a play game of checkers or something just sitting on the couch. So we kind of have those conversations with her, like why she has to sometimes stop doing what she's doing, she can get right back into it. But we might need to take 10 1520 minutes here or there to just settle down a little bit, have a little snack or juice or something like that. But I think about how I'm going to have additional conversations with her in the future. And I've gone back and forth, you know, talking in the mirror how I'm going to handle it, it's probably going to be one of those situations where I have a great plan going in, and it's just not going to go anywhere near how I play it.

 

Stacey Simms  21:50

Um, I do want to ask you a few more questions about your children because you have another child as well. But let's take a couple of minutes and talk about the diabetes online community from a few years back, if you're a longtime listener of the show, you know, we started this in 2015, which was probably the beginning of the end of the like the hybrid if we were to check blogging and that kind of thing. And the whole, you know, I guess what some people would call the Oh g diabetes people, you know, maybe that's when it peaked my non scientific method here. But you were, you know, you were right in there and all of those conversations, and I'd love to know, how did you find the online community? What was your first entry.

 

Chris Stocker  22:26

So I first started blogging or even finding out about blogs back in 2009, I was working for a, I was interning actually at a diabetes supply company. And they said, Hey, we want to start a blog. So I started to write blogs for the company. And then I was like, Okay, this is I kind of enjoyed this. And then I started finding other type one, blogs. And I thought, you know what, I have so much that I want to say, and I felt that I didn't have anybody to talk to about it. Because I didn't know anybody with diabetes, I went to high school with the kid. But I knew we drink Gatorade at halftime of football games. But that was it, we had water in a Gatorade, that was all I knew about diabetes. So I just started writing things that were in my mind that I think I just wanted to get off my chest, I just started writing about them. And I didn't even care that nobody was reading it, I just wanted a place to be able to just share my thoughts. And it just helped me just help my mind mentally just be able to get it out on to you know, typing on the keyboard and just reading it. So that's kind of how I started. And then I can't remember getting my first comment, I got a comment on a post, it was probably after about six months of writing daily. And so I mean, I can't do the math that fast. I mean, I, I was well into 100 posts before my very first comment, and somebody said, Wow, I was going through this exact same thing. And your feedback here really changed my mindset on it. And I'm going to try this and you know, make changes in my life and whatnot. And I just thought, wow, I just changed somebody's life. Like I just changed how somebody thinks about something simply by me just typing on a computer. And then it just that was kind of that first, like, I'm actually helping other people by just getting out the words that are bothering me. And then it just kind of took off. From there. I just started writing daily and just I started meeting other people. You mentioned previously speaking to people on Twitter and a little bit of Facebook back then, but just meeting a ton of different people online, and just writing and writing and writing and writing and just sharing my story. And it was just, you know, I was never very edited in my blog post. And even my wife would always say, Did you know that you spelled this wrong? Or you said this? Like No, because I type and I wrote the way that I speak and it came out that way and it was just how, you know it was I didn't have a you know, a very like a very edited style. And it just kind of, you know, people kind of just connected with it and it was just Every time I would get a new comment or a new share or something it felt it just felt motivating to know that I was helping people by getting those stories out there.

 

Stacey Simms  25:08

It is funny. That's one of the reasons why I love podcasting, because there is no editor for my grammar or my spelling. And I have transcripts now. And those are very difficult for me because I usually we clean up the diabetes language because my transcription software doesn't speak diabetes very well. But I'm not correcting the grammar and the spelling from pot. Yeah, it's really, really interesting. And I'm going to link up your your blog if that's okay. Because I think a lot of those older posts in itself, a lot of residents, I mean, I blogged as well. It's starting in 22,007. And I think two people read that blog, but I've kept it up. Well, I just like you I got so much more out of it right. For me, it was perfect for me, I got I got a lot of help, just mental health assistance for writing it almost like a diary. But it has been in the last couple of years, people have found the goalposts and it's helpful because diabetes issues change, but not really, right technology changes things, but not really,

 

Chris Stocker  26:03

you know, I still get notifications of comments on posts that I wrote back in 2010 2011. And one of the areas and this kind of circles back to my daughter's diagnosis is that I wrote maybe, I think I wrote two posts total about my fears of one day having a child B die, those with diabetes. And to this day, those are still some of my most, you know, most read posts and most commented posts and people to this day still comment or send me emails like, hey, how did you go about this? Or how did you deal with this? And, and it's just, you know, those are things that I wrote, five, six years ago before I even knew I was having a child. And it's still relevant today as well.

 

Stacey Simms  26:43

Well, you're dipping your toe back into social media with, you know, YouTube videos, you're on Instagram, are you podcasting again,

 

Chris Stocker  26:49

I, I am not as of now, but I'm not saying that I'm not going to. It's funny, I did start a podcast, and I recorded two episodes. And my daughter was then diagnosed. So I kind of stopped. You know, I

 

Stacey Simms  27:05

mentioned that when I started this podcast in 2015, it seemed to be kind of like, I don't know, for sure. But from my experience, it was like this high point of activity online for certain a certain group of people. And a lot of those folks have kind of moved on or paused and come back. And, you know, I wonder too, if there isn't just a natural life to some of this old natural burnout to some diabetes stuff. And you've been very open about those kinds of things. Can you share that part?

 

Chris Stocker  27:31

Yeah, absolutely. So once my daughter was diagnosed, kind of everything just kind of went on Paul's it was this is our focus. Right now, this is everything that we want to focus all of our efforts on that I was actually going back to, I was getting my real estate license at that time, as well. So there was a lot, a lot going on at that time. And once I decided to start getting back into writing, I sat at the computer probably 20 different times to start writing about my daughter being diagnosed. And I was just filled with diabetes just all day long, whether it was I was managing my own diabetes, and my alerts were going off, and then it was time to check my daughter's blood sugar and then give her insulin and do her calculation, then do my calculation. And it was just too much that at the end of the day, or the the start of the day, I just didn't want to, I didn't want to think about diabetes anymore. I didn't want to write about it, I just kind of wanted to manage it. And that was it. And I definitely felt a disconnect from the diabetes community. Because I just kind of just left I just I shut down. And I just didn't want to be involved with anything. I didn't want to see posts, I didn't, I didn't want to read people's posts, I didn't want to watch videos, I didn't want to listen to anything, I just wanted to kind of just deal with that. And and it was just, it was a lot at once. And that's kind of what shut everything down for almost a year and a half. And then I started to write again a little bit, and they kind of came back to me where it was, I can remember the exact moment I was writing a blog post and my low alert went off and within five minutes, my daughter's low alert went off. And then my Omni pod alerted me that I had a low reservoir. And my daughter's went off about 15 minutes later that hers was being changed that night. So we were both having a low both theater pots change that same night. And I think that I actually had to change out my CGM that night as well and it was just a complete overload and I said are stopping again and I can't deal with this I need a mental break from from diabetes and I need to be at my strongest in order to be that you know role model and example to my daughter and I felt that let her see me get frustrated with with an alert or an alarm and and be like oh, I have to change that tonight or hi we have to do this or I'll have to drink a juice. I tried to never let her see that and never let her see that. There may be some frustrations that come with living Diabetes,

 

Stacey Simms  30:01

I'm hesitating, Chris, because Far be it from me to armchair psychologize anybody, but I want to plant this in your brain. And I agree six years old is not the time to do that. But I hope as she gets older, you do allow her to see some of those frustrations. And again, I'm not your doctor, or psychologist, right? I think if you were my dad,

 

Unknown Speaker  30:22

I hope this really is not at a place, I'm such a nosy person. Mom, I

 

Stacey Simms  30:27

become that we're my dad, to share those experiences, you know, when somebody shares the bad as well as the good, it just makes your bed feel not so bad. So when she's like, 10 1112, you know, those are the times when you guys I know, I know, it's in your future that you're going to share all of that, and she's gonna appreciate it so much. But I I agree, because I remember with Benny, you know, at six years old, you're just, you know, it's like, you know, you gotta brush your teeth. So you don't, you know, you don't get carried away. Everything's fun.

 

Chris Stocker  30:55

Yeah, I mean, it's, you know, it's a struggle at times, just to every three days, when a new pod has to go on, you know, she has to be watching either a cartoon or using the iPad, some some type of distraction. Now, we don't plan on doing that forever. And we've already kind of slowed that down a bit of what we let her do to kind of distract her from it. But I know that that's going to change in the future. And those are definitely, you know, some conversations that I would definitely have with her about the frustrations and stuff. But I think my thought process behind it is that if she sees that I'm getting frustrated of having to put on a new ami pot or put on a new Dexcom that she's going to think that it's so you know that she's going to put up by force who and and it's just something that I know will come one day, but I'm just trying to push it off as far as far

 

Stacey Simms  31:44

and I think you're very wise, because I will share with you that Danny ran away from insets. He had to bid pump his whole life. And you know, every three days, you're teaching the inset, and we tried everything Chris, we did, you know, numbing cream and ice cubes and rewards and he ran away from them. It was a struggle until about age eight or nine. And then it amazingly got better. And now he does everything himself for the past, I want to say three or four years even. And it's and then some kids start doing everything themselves very early. Right. I think when you're diagnosed tiny the trend that I noticed anecdotally is that it takes them longer just to be completely independent, because that's how they've been taught. So I don't take that iPad away before she's ready. She'll let you know when she's ready.

 

Unknown Speaker  32:26

You're right,

 

Stacey Simms  32:27

she will, it'll be fine. And I will tell you one funny story. I don't know if I'll keep this in because I'm talking too much in this interview. But we were laughing the other day because I used to let Benny say what we called potty words when he changed his incident. So right, we put it on and he could be like, oh poop or whatever. And I said to him in the kitchen the other night, he came down to change. And I said do you want to yell some potty words? And we were hysterical of the thought of thinking of my preschooler yelling real curse words, like Could you imagine if you know what he thinks of potty words today, so you can fill in the blank on that.

 

Chris Stocker  32:58

I like that. I like that idea. Actually, she will probably enjoy.

 

Stacey Simms  33:03

I think we would all like to yell some potty words when we're doing stuff.

 

Unknown Speaker  33:06

Absolutely.

 

Stacey Simms  33:07

Let me ask you about your your second child because your wife was pregnant, which had to be so stressful when your daughter was diagnosed during that time. And you had, as you've said, you'd already been nervous about any of your children being diagnosed. Again, I feel like I'm being very nosy. But What went through your mind at that time.

 

Chris Stocker  33:25

So initially, I mean, my initial thought was the stress that was going to be put on my wife and her being pregnant at that time, and making sure that she was okay with it, and trying to comfort her as much as possible and try to take away as much of the stress that I could possibly do, you know, from a mother, and, you know, knowing that she was pregnant, we knew there were chances. And it was just a decision and conversations we had throughout our relationship. And before we were married, we're gonna have kids no matter what it's what we want to do, and we're not going to let the thought or the chance of something stop us from doing anything. And that's kind of our, our thought process in life in general. So we knew that we were going to, you know, have wanted to have a second child. And we actually were scheduled to find out whether we were having another daughter or not. On February 13, I think and my daughter was diagnosed on the 12th. So it was actually in the same hospital. My wife left and went, you know, down the hall and oh, my God on the elevator and went like two floors down. And, you know, she did what she had to do there and then so we were you know, planning on having this big celebration to find out if we were you know what we were having and next thing you know, we're we're in the hospital for a totally different reason.

 

Stacey Simms  34:48

I gotta be honest to Chris, I love talking to dads of kids with type one because we hear so much from moms, right, so many of the bloggers and the writers and podcasters like me Moms. So let me ask you as a dad, now not as just a person with type one, but as a dad of a child of type one. What advice would you give newly diagnosed families, I mean, you're almost you're two years into this. Now you know what worked.

 

Chris Stocker  35:12

I would say that just being open, especially with you know, your spouse about how you may be feeling about it, I think a lot of times that the reason why we don't hear dads speak out too much is because they want to be the backbone, they want to be the strong one they want to, to not show that they're upset and show their feelings. And for me, I've been open with my wife, me and my wife, we've had conversations, we've cried together about it, we've talked about things that I let her know, my fears that I may have over things about it, it has helped tremendously, because there are times where I just say, like, Hey, listen, I need a break tonight, I can't do this, I've had a bad diabetes day, I'm stressed out by this, I'm just getting upset about it, I need a break. And that open communication has really helped us become an amazing team. And quite honestly, my wife almost entirely manages my daughter's diabetes. At this point, I cannot express like how grateful and like, just proud and I'm amazed by how my wife has taken this on and have she just tackled this head on. And I mean, she's pretty much almost managing my diabetes at this point, telling me how many carbs are in my meals and this and that. So going back to being the dad is that I just think that it's okay to you know, you just have to be okay with having those uncomfortable and vulnerable conversations and, and just know that it's for the better good, like, let your guard down, let it out, it's going to help that you don't have to just be you know, the strong one, you know, every single day in every single situation where it is okay to just let your fears out. And if you need to talk to somebody, talk to somebody find somebody that you know, you may have something in common with and just get it out and talk it out. And it feels so much better. Even having diabetes for 1415 years before she was diagnosed, I reached out to other dads have type one kids that I knew from meeting in the community and had, you know, conversations with them, like, what do I do from here? Like, I know how to manage mine, but like, What do I do? How do I do this? How do I tell her this? How do I explain this, and that helped me tremendously. And that's part of that community feeling and knowing that, you know, for all those years, I was, you know, putting into the community to be able to reach out when I was the one in in need of help. And it was great to have that community there to let me know, like, You got this.

 

Stacey Simms  37:40

I'm curious, if anything in the last two years with your daughter has surprised you any of your reactions to things or anything that she's done, you know, you were not six years old or four years old, when you were diagnosed, did anything surprise you about her diagnosis or your experiences with it or your reaction?

 

Chris Stocker  37:57

I am not kind of glued to the Dexcom as much as my wife is. And my wife is with my daughter a lot more during the day than than I am as well. But one thing that my daughter does is she knows that if she's going to be you know, she's playing upstairs in her room, she needs to now take her phone with her or her Dexcom actually with her and she will let us know. I think she was only diagnosed for maybe three or four months, the first time where she said to me, daddy, my knees feel wobbly. And my initial reaction was, first of all, how do you know what the word wobbly means. And second of all, let's get the meter out. And let's check real quick. And I can remember we were in target which another place no matter every time I go in there, it ends up in a low, but we are in target and she said her knees felt wobbly. We checked her she was 41. And I just remember picking her up and sprinting to the front of the store and just finding the first juice I can find and just said just start drinking and I remember her asking about paying for it or something. I'm like drinking it don't you don't have to worry about that. I'll figure that out. Just start drinking. So that was probably a surprising moment to me of her letting me and this was before she had Dexcom. So that was very kind of surprising moment to me that she used the word wobbly and she knew that she fell off. So now she does that quite often now where she she says I feel low. She'll Look at her Dexcom and just randomly I'll just hear her scream out 125 or something. Okay, I guess that's what her number is so low that she she has taken that on as you know, she's kind of proud, not kind of she's extremely proud to have diabetes. You know, she in her classes. She talks tells people that she has diabetes and whatnot. So she definitely surprised me of how proud she is to wear it. That's awesome. That means you guys are doing an awesome job as parents. That's something we actually did kind of talk to her about that she doesn't ever have to be ashamed or, you know, she doesn't have to be scared to tell somebody that she has diabetes. In fact, you know, because my philosophy has always been I want to tell you that I have it because in case something Goes go wrong. I want somebody around me to know

 

Stacey Simms  40:04

this before I let you go, you have been posting you know more on Instagram and you're really getting back into it. And I noticed you posted a lot about your daughter and her reaction to the virtual friends for life conference. And I, I was part of that. And I gotta tell you, I wasn't sure what to expect me this isn't a commercial for friends for life, even though we love them. But I was stunned at how good it was to connect even virtual with people. You know, we're all stuck at home, we can't get out to meet up. But I loved that conference, did your daughter have fun? There was so much for kids.

 

Chris Stocker  40:35

She had an amazing time. I mean, she still talks about it almost every day. To this day, she talks about the different events that were going on, she talked about playing bingo with with the guy from Toy Story. She talked about the all the animals that are Parker Ranger that was there. And I mean, she loved it, she loved seeing other kids and hearing other people talk about it. And we were planning on going, you know, this year in 2022 it so it was something that she already knew was going to happen. And you know, the day was over, she was she started crying. She was so sad. She couldn't wait till the next one. And it was just, it was a you know, it was life changing to her because, you know, she had only known me and her cousin that had and a few other people that she had met that had diabetes, but to be opened up to this world of all these other kids that were living with it and we're all sharing their different CGM and their different pumps and seeing a different perspective other than just her life and you know, my life with it was just absolutely amazing for her to experience that even virtually, it was just amazing how smooth it went. And and all the activities that were there for the kids. Yeah,

 

Stacey Simms  41:50

I mean, I gotta be honest with you, I didn't put a lot of time because I figured, well, you know, I'll do my speech. And I'll watch one or two, the research updates. I was hanging out in the social hallways, you know, with my mom, friends, it was great. I was I thought it was a very well done. And so we'll put a plug in because they've got the march one coming up. And we put a link in the show notes. Is there anything else Chris that you wanted to push people to or to you know, to put all your links to follow or anything that you've got coming up that you wanted me to make sure to mention,

 

Chris Stocker  42:14

people can follow me on on Instagram, it's just life of a diabetic, it is a newer account, because I am trying to keep it separate it from a personal Instagram account that I had previously. And it's just just to keep things simple and clean. I've just kind of started a new one. And I am putting out weekly YouTube videos now so they can check that out, you know, with the link in the in the show notes, but I just hope that you know, I can continue to help people and share my story and also my daughter's story. And as long as it helps one person, I feel that all the work and effort that goes into it is well worth it. That's awesome.

 

Stacey Simms  42:51

Well, no doubt you'll be helping other parents and other adults with type one. Chris, I can't thank you enough for coming on. It was so much fun to talk to after connecting online for all these years. I really appreciate it.

 

Chris Stocker  43:00

Absolutely. I appreciate you having me on.

 

Unknown Speaker  43:07

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  43:13

More information including Chris's YouTube channel and his Instagram and all that good stuff will be in the shownotes. And that is always on the episode homepage as well. So if you're listening in an app and it doesn't show you what you want, just go to Diabetes connections.com and find the episode should be very easy to do.

I should let you know he mentioned it went by quickly when he was talking about friends for life. He mentioned the Toy Story guy playing Bingo. what he's talking about there is john Ratzenberger who people might remember as Cliff Klavan from Cheers, but who has been a voice of a character in every Pixar movie, his son lives with type one. And Tom Karlya who's a very big part of friends for life, and also the Diabetes Research Institute. He knows him through his work through the DRI together. So Tom brought john to friends for life this year, which is really, really cool. And as I mentioned, they have another event coming up in March and I will put a link in the show notes on that.

Tell me something good in just a moment. But first Diabetes Connections is brought to you by Dexcom. And we started with Dexcom back in the olden days before there was share. I think we had Dexcom for two years, almost two years before Cher was added as a feature. So you know, we know using Sharon follow makes a big difference. To this day Benny and I set parameters about when I'm going to call him how long to wait, you know, that kind of thing. It really helps us talk and worry about diabetes less. It helps if I need to troubleshoot with him. I love this you can see what's happening over the last 24 hours and not just at one moment in time. The alerts and alarms that we set help us from keeping the highs from getting too high and jump on lows before they're a big issue. Internet connectivity is required to access separate Dexcom follow up. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

Our first tell me something good story is one I wish I had jumped on myself. But I read about it at diabetes mine and Mike Hoskins always does great work over there. And I had to share it with you. Dr. Drew Weissman at the University of Pennsylvania is one of two key researchers behind the science used to develop the first COVID-19 vaccines. And he lives with type 1 diabetes. He was diagnosed more than 50 years ago, he didn't announce that he had type one, you know what he was in the news for this vaccine. But apparently some eagle-eyed folks by the photo of him getting his own COVID vaccine shot and they saw that he had an insulin pump on and I'm looking at the photo, as I'm telling you this, he's getting the Pfizer vaccine. And you can see it looks like a Medtronic pump on his waist. I will link up the story from diabetes mine, which is a great conversation with him, including photos, and Great job guys getting that done. Maybe we can grab Dr. Weisman and get him on the show.

Our other bit of good news comes in the form of more books for very little ones with type 1 diabetes. We've had folks on the show before who are authors of children's books, which I think are a really vital part of young children's care when it comes to type one. I know reading books like this to Benny, and bring these books to preschool and kindergarten and really willing to elementary school helped give us friends a good understanding. And you know, just seeing yourself in a book is a wonderful, wonderful thing. So I just want to mention a couple that are newer out there.

The Adventures of Captain Lantus is one that I have seen a lot of this focuses on seven year old Maxs, who has type 1 diabetes, and it's kind of a fantastical adventure, because everyone in beta town has type 1 diabetes. So this is a real fantasy story and very cute stuff. Brandy in our Facebook group in Diabetes Connections, the group published her T1D toddler book, it's called Little shots for little tots. And it is also very cute looking.

And one that I think is actually a pretty important one is called when I go low, a type 1 diabetes picture book. This is by ginger Vieira. And Michael Lawson. And we have talked to both of those folks on the show about other books that they have put out there. But this is a book that I wish I'd had when Benny was younger. The other ones are great stories and always fun. But this teaches about when a child is low, what does that feel like? What How do you articulate it? You know, what should you know about it, it's a great way to get young people with diabetes to talk about what low blood sugar feels like, and to help explain to their friends and friends, families and kids at school and that kind of thing. So I will put the links to all of these guys. They're all on Amazon. And I'm sure they all have their own author pages as well.

But there are so many great books about diabetes right now, if you've got tips, or you'd like to hear more, I had thought about in the past doing book reviews, but I don't have the time. So if that's something you're interested in, let me know, we could have an ongoing segment or something. I'm gonna be looking for new Tell me something good stories in our community. So please keep an eye out for that. I love to ask in the Facebook group. And you can always give me your good stuff.

Before I let you go quick reminder, if you are a podcast person, if you are thinking of starting one, if you have one, I have a podcast course it has nothing to do with diabetes. This is all about podcasting, and learning about podcast sponsorship in an ethical way, in a way that makes sense for small businesses. You know, I'm not Amazon podcasts here, or Wondry, or Spotify. This is about independent podcasters who want to serve their communities and make some money, enough money to cover the costs of the podcast or perhaps make a living at it. So I've launched a new course there's a free webinar coming up, I'll put all the information in the show notes.

And if you're just here for diabetes, which of course I think 99% of you are we have another classic episode coming up later this week, we're going to be talking about spare arose. But this isn't any spare a rose, informative interview. This is my very first game show that I did here on Diabetes Connections and it features some very familiar names, some very silly stuff, and a couple of mistakes along the way that we left in. So that should be fun, and that should be out on Thursday.

Thank you so much to my editor John Buckenas from audio editing solutions. Thank you so much for listening. Until next time, I'm Stacey Simms. Be kind to yourself.

 

Benny  49:21

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Feb 4, 2021

Ernie Prado was diagnosed with type 1 as a teenager and is now a project engineer at NASA. He has a terrific story and it's not exactly what you'd expect. Ernie wasn't a diabetes superstar who lived a perfect diabetes life all along. We're so grateful he was generous enough to share the real story!

This is our first in a new series of "Classic Episodes." In addition to our regular Tuesday episodes, we'll bring you an additional episode like this every Thursday. What’s a classic episode? It’s an interview that aired a long time ago but isn't dated in a way that takes away from the experience. We’ve been around for a while, so there’s a good chance you missed some of these back in 2015 or 2016.

Stacey first spoke to Ernie Prado in 2016 and he's now the Project Engineer for something called the Super Guppy. He says it transports outsize spaceflight cargo in support of Artemis which will take the first woman and next man to the moon. Check it out here

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcription:

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by Inside the Breakthrough, a new history of science podcast full of digital stuff with quite a few laughs along the way.

 

Announcer  0:15

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:21

Welcome to a Classic episode of Diabetes Connections, something a little new this year. But as always, we aim to educate and inspire by sharing stories of connection with a focus on people who use insulin. I am your host, Stacey Simms, and I am really glad that you are here.

So I said something new starting this week in 2021. In addition to our regular Tuesday episodes, I'm going to be bringing you an additional episode like this on Thursdays. So what is a classic episode, it is an interview that has already aired a long time ago, but it is still what we would call evergreen. It's not dated in a way that takes away from listening to it. Now we have a lot of episodes. We've been around for a while. So there is a good chance that you missed some of these interviews back in 2015, or 2016. And these are really interesting, fun people and I wanted to bring their stories to a wider audience.

This week, you are going to hear the story of a NASA engineer, a rocket scientist who lives with type one. Ernie Prado has a really great story. But it's not exactly what you would expect. He wasn't a diabetes superstar who lived a perfect diabetes life all along. And I'm really grateful that he was generous enough to share the real story you will hear from Ernie in just a moment.

But first, these classic episodes are brought to you by a brand new podcast. And this is pretty cool to have a sponsor who is also a podcast. So let me tell you all about this. This is inside the breakthrough. A new history of science podcast full of Did you know stuff like did you know Henry Ford and Thomas Edison were really good buddies. They even work together on an electric car, and it still failed. Episode One dives into stories including Archimedes yelling Eureka while naked in the streets and Alexander Fleming's discovery of penicillin by accident inside the breakthrough was created by SciMar SciMar is a group of Canadian researchers dedicated to changing the way we detect, treat and even reverse type two diabetes.

This show is historical wisdom mixed with modern insight with quite a few laughs along the way. I've listened to it. It's a great show really high production value, great host and great information search for inside the breakthrough anywhere you listen to podcasts and at Diabetes connections.com.

It has been almost five years since I first spoke to Ernie. What is he doing now? He is the project engineer for something called the super Guppy. It sounds funny, but this thing is really amazing. I'll put a photo and a story behind it in the Diabetes Connections Facebook group, Ernie tells me it transports outsize spaceflight cargo in support of Artemis, which will take the first woman and next man to the moon. So pretty important job really interesting stuff. And I think as you listen to this interview, you'll see that Ernie is really where he wants to be. Please remember, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. So here is my interview with NASA's Ernie Prado from June of 2016.

Ernie, thank you so much for making some time to talk to me today. I really appreciate it. Yeah, before we get to the rocket science and NASA and everything that's going on now, take me back to the beginning you were diagnosed with Type One Diabetes at the age of 15. Did you know at that point, that you wanted to have some kind of career with the space program?

 

Ernie Prado  3:55

Oh, yeah. So my life goal, I guess when I was younger, I was always drawn to space and airplanes. And my mom said, I cry if I didn't watch Star Trek when I was like four. So I wanted to be an astronaut. And before that I wanted to be a fighter pilot and fly f 18. So I was always drawn towards this and my goal was to end up in space.

 

Stacey Simms  4:18

Well, you were diagnosed, as I said, age 15. The diagnosis was about, let's say 15 years ago, you're you're 29 you're 30

 

Ernie Prado  4:26

Yeah, it's half half my life now. Yeah. Um,

 

Stacey Simms  4:31

what did the doctor tell you at that point was that you have type one. And you're never going to do these things that you always wanted to do? Or was it a little bit more kind?

 

Ernie Prado  4:41

So actually, the past few months, I've been trying to figure out the exact date I was diagnosed just because, you know, I've been reading about folks and a lot of folks have a die of diversity. And I kind of was trying to figure out mine. And I've been thinking about that actually contacted the hospital. And unfortunately, I don't have the records. More, but I don't remember the doctor saying, you know, you're not gonna be able to do a lot of this. I feel like I've encountered more that, you know, outside of maybe the medical community. So I've been lucky enough to take part in a medical study from with FA and utmb about trying to get folks of chronic conditions like diabetes into space through companies like Virgin Galactic, and XCOR. And so I got to go into centrifuge. And that's pretty cool thing for diabetics to do. I did encounter some resistance when I was trying to become a flight controller. And so at the time, I had other projects coming up, so I kind of, you know, let that go to the wayside. But I haven't stopped me from doing most of the things I wanted to do. Maybe a few, but I try to find ways around it and still do them anyway.

 

Stacey Simms  5:52

Yeah, and I want to talk more about that. I'm just trying to kind of figure out what this was like for teenage you. Because that's a tough time anyway, and to be diagnosed at age 15. When you're hopefully, you know, you're busy with a lot of other things. Do you remember what it was like at that point in your life to make that kind of change?

 

Ernie Prado  6:10

Yeah, it was really hard, actually. So I came to accept that a lot more about the time I was 18. I was about three years after those first three years were a little bit difficult. Because, unfortunately, and you know, I love my mom to death, but she kind of told me not to talk about my diabetes, and to not let people know I had it. And over the years, I've realized that was a little bit, not probably not the best method to approach it. And so I dealt with it on my own a lot or just with support at home and from my family. You know,

 

Stacey Simms  6:44

I'm sorry to interrupt. I've heard that from other people that at, it seems like a better idea to try to avoid discrimination, ignorance by kind of just keeping it to yourself, is that maybe what your mother was trying to do?

 

Ernie Prado  6:59

I think so. And, you know, I think she did with the best intentions. But it was, it was really difficult to not talk about something that I considered So in general, about myself, because it was kind of thrust on me and said, hey, you're earning now you're diabetic, and, you know, it was through no fault of my own, it just happened. So it would be the same thing, as you know, having like a really strong interest in you know, like space, I wouldn't be able to hide that. I didn't want to hide the fact that I was out back. When I got to college, I started telling everybody and you know, I've continued that. But it was difficult, you know, to try to explain why I wasn't eating certain things around my friends, or why couldn't go out sometimes, or why I had to stop playing football and wrestling and all that. So it was a, I'd say it was a pretty good difficult time in my teenage years.

 

Stacey Simms  7:49

And you had to stop playing sports was that because of I'm gonna just guess, because your mom was not comfortable? Or was it something that happened?

 

Ernie Prado  7:57

Yeah, partly that. And my first doctor, I think, you know, in the abundance of caution said, you know, you might want to take it off for a little bit and learn about your diabetes and how to manage it. And it might have been understood as he shouldn't be playing sports anymore. But depressing. Yeah.

 

Stacey Simms  8:18

Well, okay, so you get to college. You're you. You're telling everybody you have diabetes, what you study in college, were you now going ahead with the engineering with the career in space program?

 

Ernie Prado  8:31

Yeah, absolutely. So when I got to college, actually declared my major before getting except for as soon as I got accepted, I believe. And I chose to pursue a double major in aeronautical sciences and engineering, and then mechanical engineering. Because I figured, you know, if maybe right now, I can't fly, or do what I want. I'm going to get involved somehow at NASA. And luckily enough, it ended working out. And I kept my majors throughout. And I tried to add a minor and do some pre med stuff, but I ran out of time and money, so I didn't get that.

 

Stacey Simms  9:03

And were you able to go to work for NASA right away? Where'd you go to work? Um,

 

Ernie Prado  9:08

so yeah, I was very fortunate. I began working at NASA as a co op at the age of 20. So it was my sophomore year in college, and I've been here since. So it's been about eight and a half a while on this cluster nine years. I've been out here. And so full time for about a little over five years now, though, for the first few years, I went between school and working here at Johnson Space Center. And I think in total of my college time was about a year and a half out here. So I really got my degrees in about three and a half years. Although I was in Davis for five years.

 

Stacey Simms  9:39

What was it like? And maybe this moment happened when you were as you said, you were 20 and you went to work there but you're still in college, or maybe it happened after? What was it like when you walked into NASA and realized I am going to be here, at least in this capacity.

 

Ernie Prado  9:55

So I'm kind of smiling like I believe right now. Remember that first day I mean, I'd never been to Johnson Space Center before, you know, being hired here. I've been at Kennedy Space Center with my dad, that was my graduation gift from high school, he took me there and in his big truck, and we tried to see a launch of, I believe, is STS 114, which was returned to fly and Stephen Robinson was going to launch that mission, which he was an Aggie from UC Davis. And that's where I was going to school. Then hurricane Ernesto roll through, me and my dad are both named Ernesto, and it hit a lightning tower. So they delayed the launch, and I didn't get to see it. But then, you know, a few years down the road, showing up here and saying, Man, I'm walking the same like ground, the astronauts have walked in flight controllers, and all these people in history. It was this really cool sense of I can't believe it. And I still kind of get that pretty often. It's a really cool job.

 

Stacey Simms  10:55

It's so amazing when you get to do the things you've always wanted to do. That's a great story. I love hearing that. I was reading an article that the writer and author Moira McCarthy wrote about you more has been on the show a couple of times already. And she talked about I guess you told her, there was a point at which you realize that, you know, diabetes was something that you needed to kind of pay more attention to, during your time at NASA. Can you tell me a little bit about that?

 

Ernie Prado  11:29

Yeah, so I guess that happened. Because I was working at the NBL, which is the Neutral Buoyancy Laboratory. It's our big environment for it was a gigantic pool, 6.2 million gallons. And it's the environment where we train astronauts at a spacewalk. Typically, if you're a co-op, in that building, you as a guest, at the end of your rotation, you get to dive in this big pool, which has a mock up of the space station in it. So it's this amazing, cool, cool thing to do. And my A1C was at 13.9. so incredibly high. I wasn't taking care of myself, just because I was stressed at school and more focused on getting good grades and kind of in a, I knew I had to diabetes, and I couldn't get rid of it. But I guess, and even though I told people, I wasn't accepting it, so my mindset was, well, you know, if I don't think about it, I don't have to deal with it. And that was a very poor mindset to have. So once they told me, Well, you know, your sugar is not controlled, you're not gonna be able to dive in this pool. I was, it was kind of a wake up call. And I was going to Well, that's a real bummer, because I don't know if I'll ever get to be here again. Or if I have this opportunity again. And so unfortunately, I didn't get to dive in the pool. But I had a very cool boss, he said, Well, you're still scuba certified. And although the medical folks won't sign off on you to do this, you can still snorkel the pool. So that's exactly what I did. I had my snorkel and I got to go about six feet deep in a 40 foot deep pool, I would have loved to sit on the floor and have my UC Davis flag. But, you know, I still got to hover above the mockups of the Space Station. And actually, there was two astronauts in there when I dove, I think it was Lincoln and Patrick, from STS 130. And I got to see them practicing for their spacewalk that they would do. And then later on, when I was back at school, I got to see them through the spacewalk in space, and I was going, I got to be in that tank with them. So I got I still got to experience it, luckily. But that was the point where not taking care of myself almost hindered something really cool that I could have done.

 

Stacey Simms  13:29

Okay, so I have a dumb question for you. They learn to spacewalk or they practice spacewalk in in a pool.

 

Ernie Prado  13:35

Yeah, so it's interesting, you want to think that you learn how to do space walking in a pool. When you're in orbit, you're in microgravity. And you're basically falling at the same rate as gravity, so you kind of just float. And so what the pools can simulate is the weightlessness. What it doesn't simulate is the resistance to movement. So in space, there is no atmosphere. So you can move very easily with very low friction. In comparison to work in a tank, you know, full of water, you have a lot of friction, when you try to move, it's kind of like when you extend your arm and try to swim in the pool. It's very difficult to do. So you can't simulate that, but the weightlessness portion you can. And they do that by attaching weights or foam on to the spaces that are in the pool, and you become neutrally buoyant, hence the name of the laboratory. So you don't sink in, you don't float just kind of hover there in one space and water. And so you actually can't even swim. If you can translate along the mock up or along the space station mock up with the hand rails on like you would on orbit. But if you need to go from one location to another, and you don't have anything to grab onto divers have to come and move you.

 

Stacey Simms  14:40

Wow. That's amazing. What made you decide Do you remember when you were younger? You said earlier your mom said you got upset if you couldn't watch Star Trek at age four. Okay, first of all next generation or original Star Trek? Very important question,

 

Ernie Prado  14:55

I believe, I think next generation but I like them all. Now. And when they come on, I will watch them. So I'm a big fan. Anything space related? And I'm in love with.

 

Stacey Simms  15:07

It's funny but but what would you remember what got you really excited about it as a kid? Was there anything you can think back on and say that, you know, you just really wanted to go into space? We were fascinated by the planets. I'm always curious what, what sparks a passion in someone?

 

Ernie Prado  15:23

So I feel like that's the hardest question to ask. And it's typically one of the ones that is asked, because it is an interesting thing. But you know, and you always hear the folk folk say, I just got the space bug, and it's kind of like this thing that just happens. So I do remember loving planets, loading stars, loving spaceships, is kind of everything about that. I'm not sure exactly what did I just think I was fascinated. There's one moment that kind of stands out to me, that was pretty neat. And it was this. eight and a half by 11, kind of photo of the first few shuttle astronauts are john young and Bob Crippen, and they were in their orange pumpkin suits. And I just remember looking at that, you know, at the time, I drew on the back and wrote my name, and like pink highlighter, and going, Wow, these folks are really cool. They get to go into space. And it didn't really dawn on me just how cool their job was, for some reason that picture always stands out in my mind. And then, you know, at 21, about a year after I started working here, I actually got to meet john young and shake his hand. Oh, wow. And, you know, so he was the commander of the first shuttle flight. But he also flew in Gemini, and then Apollo and he walked on the moon. So I shook the hand of a Moonwalker. And then that kind of like, is what threw me back to that memory of that of that picture going, whoa, that's really cool.

And, you know, I think my dad probably has something to do with it, because he was in love with the shuttle program. And he told me about, you know, driving loads in his truck over to, I think, Edwards Air Force Base and Palmdale when they were building enterprise, which was tested shuttle for kind of clarity, and never flew into space. But it did the approach and landing test, and he has pictures of it, you know, back before the real shuttle ever flew. And then I remember asking him, did you ever think you'd have a kid that worked for NASA? And he said, No. Probably some of his interest rubbed off on me.

 

Stacey Simms  17:15

That's great. You mentioned earlier, a couple of things I wanted to go through. You mentioned that you were in a centrifuge. Yeah. Tell me about that. What was that was that for testing. And I mean, that's just that's one of my nightmares, to be honest with you. So tell me all about that.

 

Ernie Prado  17:30

So that was a really awesome experience that happened about three years ago, the commercial space tourism industry is starting to come up, it's still very young, but they need to do your research on how a more average person will fare in the environment of elevated g loads and weightlessness. And so they need to gather data right now, you know, most of the folks that go up into space are I consider them superhuman, these people can take all kinds of abuse, and they're in peak physical health. But that's not everybody that would be interested in going in space. So as they start to open up this market, folks have back problem and lung issues and diabetes and heart problems. They want to understand how they will react to the forces and weightlessness and the stresses that it puts on their body. So one of my friends sent me a link that was saying that, you know, recruiting folks with these kind of conditions, to see how they will fare and I was like, amen. So I went and applied. And before even getting selected, they said, these are the weekends that you would come Are you available, I went and bought my tickets, before I was even approved. And so I showed up to the doctor for my physical, and he goes, Okay, well, you're good to go. And I said, often he goes, what we can do on goal is, like, already bought tickets, and the doctor just looked at me incredulously and goes, what you didn't know, you'd be if you'd be approved? And I said, Well, I love Southwest, because you can still use those funds towards another flight. He goes, Okay, well, you get to go on that weekend.

So I flew out to Pennsylvania, and it was the NASCAR facility. And this is like, a really incredible facility where they train pilots, you know, how to survive these incredible maneuvers that they perform, and jet aircraft and, you know, folks that are hoping to go to space and just training for a variety of things that includes stresses on the body. So they stuck me in this centrifuge. And I had another participant there with me, who was a former F15 pilot, which is just the coolest thing ever. And they subjected us to the flight profile of the XCore link and the Virgin Galactic spaceship two, or one I believe at the time. And so I think I peaked at about seven and a half G's for about 15 seconds or so. But you went through the profiles and got to see how it would be the experience of spaceflight. And so they put you through the asset and the decent, not so much the weightlessness portion, but it's very interesting to see just how much it affects you. My sugar levels were good, but I was so tired because you have to flex your entire body to prevent from blacking out and there's specialized breathing techniques to keep kind of pressure in the lungs and just to maintain how Consciousness. So luckily, I had a very experienced person there with me who taught me, you know, this is how you how you hold your breath, or this is how you flex all your muscles at once. And I did, they seem to think that I did very well. And it was a really cool enjoyable experience, and a video of it and pictures and probably something that I'll never forget, I was just so neat.

 

Stacey Simms  20:19

Were they very interested in your blood sugar particularly did they measure that throughout?

 

Ernie Prado  20:24

So I measured it before and after, you know, a few times during the day. I didn't have my CGM at the time, I didn't have it available to me. But I wasn't worrying because the needle kind of hurt a bit. It was one of the older ones, just painful. So I kind of was avoiding it. So I did the finger pricks. And yeah, my sugar levels maintained pretty well, they said, you know, keep a little bit higher than normal. So that way you don't tank and so I think I was staying around like the 170s or so. But it didn't affect me at all. And I think I was playing around going that this was the first instance of an insulin pump going through that kind of G load. And it probably should have told because

 

Stacey Simms  21:00

that was my next question. Did you do you worry your pump during

 

Ernie Prado  21:03

this? Yeah. And I didn't capitalize on it.

 

Stacey Simms  21:07

What kind of pump? Do you Where did you were at the time.

 

Ernie Prado  21:10

So at the time, I was wearing my Medtronic, and I think it was the 720 paradigm. And it performed pretty well. I mean, I still have the same pump right now it's lying on my counter, because I’ve switched to a Tslim. But it's survived it just fine. And it performed perfectly after that. And apparently during. So that actually would probably would have provided some really cool data to that team. And I just didn't make the connection at the time, unfortunately.

 

Stacey Simms  21:39

Well, you had other things to think about. And it's interesting that they didn't ask I mean, that's, you know, that's just one of those things where they're, they're studying people with diabetes. You know, I would assume they looked at all of that, but the upshot was that you were just pretty much really worn out.

 

Ernie Prado  21:51

Yeah, I was, it was, I was surprised how tired it was. Because I think throughout the it was two days, and I think throughout each day, maybe 15 to 30 minutes of that day, we're you know, the elevated g loads. And I went home and or to my hotel, and I just asked all those exhausted because you don't realize it but you're working out every single muscle in your body for that short timeframe. And it actually takes a lot of energy others. And you know, Bobby, the guys that said that you eventually get used to it, you know, once you're fighting jet, and you were a GC to help put pressure on your body, and it helps do some of that work for you. But we didn't have any of that equipment.

 

Stacey Simms  22:31

You talked very early on in the interview about flying about I think you said flying F18s. Is that something that you would like to be doing? Or is that something that you have done?

 

Ernie Prado  22:40

I've never gotten to fly an F18. So that's a military jet that the Navy uses, you know, as one of their fleet. And so that's like a dream of mine still at this point. But you know, I mean, even any other military jet would be incredible.

 

Stacey Simms  22:58

Do you fly? I mean, I dumb question. Are you do you have a pilot's license? Do you fly at all?

 

Ernie Prado  23:03

I don't. I've gotten some stick time before on several. What are they called? The word is escaping

 

Stacey Simms  23:12

like a simulator.

 

Ernie Prado  23:14

And then I've flown simulators I've even flown the shuttle simulator. That was a lot of fun. But, like so in college, or the stick time on a Cessna 152 or 172. So they're single engine, you know, planes basically. And so they're they're not advanced, like, you know, the jets that fly like that. So I've gotten to do that. I am fortunate cam and gotten a pilot's license just because a it's really expensive. It's several $1,000 that I just haven't had to put towards that. But eventually, I'd love to do it. You can get a a pilot's license, private pilot's license, there we go. That's what I was looking for. As a diabetic, you just have to show good control of your blood sugar for about six months prior and maintain that. So you can pass the class to physical. And you can also get I believe in experimental pilot's license, but you can't make money from flying as a diabetic, at least that I know of as a type one, because they're concerned with the liability of. And I believe the terms were subtle incapacitation, and sudden incapacitation. And if you have cargo or humans, you know that you're responsible for the really big risk. And so that's my understanding of why you can't do that. And same reason for the military, because then you'd be putting other folks at risk if you know if something happens to you.

 

Stacey Simms  24:32

And in what context, though, and I apologize because I wrote down, F18 that I don't remember we were talking about trying to get more good people with diabetes to be able to fly more.

 

Ernie Prado  24:44

Oh, so definitely F18 is just one of the planes that I really love the beautiful they're so over powerful and they're just, they're sleek, and they're so cool until the Navy flies over them on carriers, you know, and actually have a buddy or two that flying is just kind of jealous. But no. So as far as I know, you probably would not have a type one diabetic find those, especially, you know, they're just not available in the civilian world. And since we can't join the military at the moment, and probably for the foreseeable future, there's, you can probably fly backseat, you know, as a passenger, but not as the pilot. But you know, I do, there's apparently a stunt pilot that does fly, you know, his personal aircraft at AIR shows. And he performs some really amazing stunts. So we can fly is just, it's a limited set of aircraft.

 

Stacey Simms  25:36

And you want to be a flight controller, you said, what is what is that job is that one of the guys that sits where we see the movies, you know, see the Apollo movies, they're sitting in the, in the back home on the front of the computer? What is that?

 

Ernie Prado  25:49

Yeah, so that's kind of the image that's conjured up when flight controller is talking to. So we have, so shuttle, and ISS and Apollo and Mercury and Gemini, they've all had flight controllers. And basically, if I controller that helps monitor the systems onboard spacecraft, make sure that everything is going fine for the crew members try to keep them safe, address real time problem. So it's a whole host of responsibilities. And so there's an entire team that does this, and it's going 24 seven, so there's always somebody monitoring the spacecraft, and it's fine. And there's Capcom, which talks to the crew, there's a flight director who's responsible for the mission. One of the disciplines that I can talk about is also which is operations support officer. And that's the group that I was in. They are responsible for mechanisms, maintenance, and things of that nature. There's then there's other groups such as Prop, which is propulsion. And so they all have different responsibilities. And but yeah, so those folks have, you know, responsibility over the crew safety, and, you know, to help them perform science, when they're in space, and just help maintain that aircraft or spacecraft.

And one of the terms that they use to describe a flight controller is a steely eyed missile man. And it's a throwback back to the early days of flight when we actually put astronauts on modified ICBMs and shove them up into space. So, yeah, I was trying to do that. I was working halftime in that group and halftime at the space vehicle mock up facility, which is where I still work now. That's where we train astronauts for the inside of the space station, and I had a big project coming up. And at the same time, I was trying to see if I could become flight controller. And I encountered some resistance from the medical side, because they were concerned about, you know, my ability to handle the stresses. And so I did have support from upper management saying that if I had the technical knowledge and know how and competent that they would support me in trying to still become flight controller. But Tom had this really cool project to create the note three mock up, that was, you know, had a large budget, and it was high visibility and a long term schedule. So I kind of gravitated towards that. And it was really cool, because it culminated in me getting to brief the ISS program manager on this mock up, bill for the ability, and I never thought I get the, you know, speak to a person like that. So that was very cool for a person that only been around as a full timer for about two years.

 

Stacey Simms  28:31

Yeah, and that sounds pretty amazing. This is kind of a silly question. But it's in my head after I mentioned the Apollo 13. In the movies, we watch movies like that, can you walk, can you watch movies like that? I can,

 

Ernie Prado  28:42

and I enjoy them. And so actually, this is this one's pretty cool. And we saw the co op, you get to do a lot of neat things, visit the historical sites and talk to historical people are influential people. So we actually watched Apollo 13, in the Mission Control Room where Apollo 13 was controlled. Wow, that was one of the coolest things that I've done. And I took a picture of the console that I was sitting at, and that same wall, a replica of that console was in the movie on the screen. And so I was showing both of them on one picture, and I was going, this is cool. One thing that I tend to do is point out the errors about that, and my friends are like just enjoy the movie. But it's it's kind of fun. And it's a little bit of the you know, the nitpick Enos of actually what's going on and that's wrong, this is wrong. But the the movies are good at inspire folks, and they get them interested in space. And be there just enjoyable, you know, it's what got me interested in it in the first place. And without that, you know, you wouldn't interest other folks. So like, for instance, gravity, that movie was just beautifully done with the cinematography. I mean, it's just incredible. And it sucks you in but there was a few technical details or are lovable and that's not quite right. Right. But overall, they're really I love watching them.

 

Stacey Simms  30:03

That's great. You know, and when we think about the space program, and you've mentioned Gemini and Apollo in the beginning of the space shuttle, and that's when I was a kid, the space shuttle was what was new, and it was so exciting. And it seemed like a few years ago, that Americans might not be that excited about space anymore. You know, the funding was going down, and people weren't talking about it. And then you have things like Scott Kelly's year in space that he just returned from where he was tweeting all these pictures out and getting people interested again, and we have, you know, the the interest in Mars and different projects. Do you feel like it's on an upswing again?

 

Ernie Prado  30:35

Oh, yeah, definitely. And that's such a heartening thing. So I was lucky and got to work a little bit during the time of shuttle that got the Washington Actually, this is a really cool experience that I just remembered right now, because you were talking about how you were around, you know, during the beginning of shuttle in 1981, which is the first launch. And if you haven't heard the video, or seen the music video, actually, countdown by rush, I highly suggest it for anybody. They attended the first launch of the shuttle Columbia, and they put together this just amazing video that kind of makes my hair stand on that when I watch it, because it's just so cool. And it's like, it's just really powerful. And I got to watch the last shuttle launch, not in person to hear Johnson Space Center and Sony Williams, who's an astronaut was right there, kind of next to me and a few other folks. And you know, she was an astronaut that has flown on the shuttle, and it was just kind of really cool to see her emotions for the final flight of the program, when it was closed out. So that was that was a cool experience. And seeing the the, I guess, resurgence or like the increasing enthusiasm about what we're doing is just so cool. And, you know, we can go out and advertise for ourselves, we really just kind of rely on the science that we put out to benefit, you know, every day portions of our lives. And spin off that influence people. So you know, a lot of folks on being NASA influences them, or their lives.

But you know, a lot of the technology that's around it has some that NASA influence. And so you know, movies like The Martian, and the mission that we just did with Scott Kelly are so cool, and so, so essential to keep folks interested in what we're doing. So it really does, it makes you feel proud of the work that you do and makes you want to do it better. Because really everything we do is for the benefit of our country and just afford, you know, knowledge for humanity. And that's, that's our entire mission is to learn about where we are and what's out in the cosmos. And it's really great to see people, you know, start to feel great about that.

 

Stacey Simms  32:49

And when you talk about the things that come from the space program that are relatable, I mean, you know, it's kind of jokey like oh, Tang, but you know, all the things that we use in everyday life didn't the insulin pump wasn't that developed, I thought I read a while ago, that part of it was developed because of NASA.

 

Ernie Prado  33:07

So I'm gonna have to check my history on that, because I'm not exactly sure exactly how we have impacted that. But if you look at some of the broader history, not just insulin pumps, integrated circuits were influenced by, you know, NASA engineers and advancements in technology. And, you know, coding and signals and mechanics and all sorts of things. So in a broad way, I'm sure it was benefited Somehow,

 

Stacey Simms  33:36

I just, we took a tour of the we took a tour a couple years ago of the Kennedy Space Center. And I remember them saying that because we all went What? So I'll look that up. I'll fact check that before we put that Yeah,

 

Ernie Prado  33:48

I'd be very interested in learning more about that. That would be so cool. And I can't believe I haven't looked into it already. If I taught you something, I'd be so excited that you did

 

Stacey Simms  33:59

and say, Oh, you know, talk to a rocket scientist. Didn't know something I knew. But let's get back to diabetes. When if we could. How are you doing now? I mean, you mentioned you struggled when you were in college and as a young adult, are you? Do you feel like you have incorporated more into your everyday life? You do? Okay.

 

Ernie Prado  34:19

Yeah. So I actually, as soon as you asked that, I looked at my pump, and I'm currently at 119. And I've been in my perfect range here for see at least three hours, six hours, 12 hours ago had a little blip above 224 hours, I had a little blip about 250. So I'm doing pretty good. You

 

Stacey Simms  34:36

were nervous. You were nervous about talking to me. Oh,

 

Ernie Prado  34:39

not at all. I do manage it a lot better. My A1C is not perfect. It's not eight right now. My goal is to get it down to those 7.5. But you know, using the CGM and you know, actually, you know, checking my my sugar with pricking my finger, you know, four to five times a day. It does help. Sometimes it can be hard to get the point Five times, or five times to check it in one day, but you know, I try to make it a priority as it should be. And really not try to brush it off at all, you know, I'll be fine, because it really does have a huge impact on my life and so levina looking to do is get back to work and out if you went back out about a year ago, and it kind of delayed me in that process. So I've started to start to do that a little bit more. So that's helping, and, you know, trying to eat better, has also helped. And, you know, I, I don't really drink a lot of alcohol, which, you know, also does help keep the numbers controlled, though I'm doing much better than it was in college. Because there was one point where I didn't check my sugar for four months. And when I think about that, now I'm going What in the world was I thinking?

 

Unknown Speaker  35:51

Yeah, well, you know, I and

 

Stacey Simms  35:53

I asked that question not, and I appreciate you sharing numbers. And I always feel really nosy when that happens, but but it just sounds to me like somehow you've gotten from that college kid who didn't want to check it. All right. And I appreciate you saying that, too. Because that's reality that happens to somebody who's now really accepted this and and doing your best was what you got?

 

Ernie Prado  36:14

Yeah. And, you know, I figured it's not going anywhere. Am I still frustrated about it? And sometimes wonder, you know why this happened, of course. But, you know, I'm trying, you look at the positive aspect of it. And so actually, you know, like Sarah Sanders, and I had, luckily had a chance to meet her. And I read her book and talk to her about it. And her view on it was just so positive. And just, you know, a woman make the best of this, that it had a huge impact on me. And you know, I've been more accepting of it. In the past few years, I remember when I first got my pump I was all excited about us showed everybody. So being in control of it also helped me be a lot more accepting of it. You know, when it was my numbers were out of range. I didn't want to think about it. And I didn't want to talk and advocate and teach people but I was just like, kind of burned out. So it's actually kind of like this cyclical thing where the better control you take of it, the more accepting you are, and the more you want to educate and get, hopefully, influence other people that have to do the same. And I'm not sure exactly how that works. It seems to be a strange tie. But yeah, I just, you know, I probably talked too much about it now. I think, folks, okay, or you get it, but yeah, I think it's great. Yeah,

 

Stacey Simms  37:34

I just jump in and say for now, I should jump in and say Sierra Sandison, if you're not familiar with her is of course, Miss Idaho. She were insulin pump in the Miss America Pageant. I think it was two years ago, starting the show me your pump, social media movement, how did you meet her?

 

Ernie Prado  37:50

So she came down to the ADA convention in Houston. And, you know, I'd heard about her a few years ago, because of why she did wearing the pump on her, on her on her body when she was getting the pageant, and I was just thinking, that is so cool. You know, she's old enough, or, you know, being proud of, of being diabetic. And I guess I hadn't ever thought of it in that perspective. And I was just like, you know, I really kind of admire that that's so cool that she's, and you know, just a response how parents are like, you know, you help my kid feel like that it's okay to be diabetic. And thinking back to the early days, and I had it and where I was told kind of young, just don't talk about it. It was it was really just a nice feeling. That's good to have that kind of inspiration for other folks. And so I said, Well, I will buy your book, read it. I'm a little hyper sided. I want to talk to her just because she seems really cool. And so I talked to her for probably God, who knows half hour at least. And so we ended up being, you know, friends on Twitter, and all that stuff. And so she's been, you know, a really cool person to know. And, you know, just somebody that I kind of look up to just for being such a role model for diabetics, and raising advocacy for it and all that.

 

Stacey Simms  39:09

That's fantastic. I love hearing that. And we talked to Sierra last year on the podcast, and she's just, she's just terrific. And she's also you know, she's this it will see in her words, I think she's like a real math and science geek too. She's really cool that way.

 

Ernie Prado  39:24

Yeah, I think she's actually chosen to pursue engineering, which I was just like, Oh, that's awesome. Yeah. If you ever need any help with with yourself or college, let me know. Because, like, I mean, you know, you got the common thing of diabetes that then you know, whenever I meet an engineer, I'm like, Hey, cool, you know, the pain in college, you've been through it. So I always like to encourage more engineers and get them into the into the STEM fields just you know, cuz we need that talent. And it's really cool to see folks be passionate about the stuff that dorks like, like myself, you know, like math and science, chemistry and all that. So Yo, it's awesome. We need more dorks.

 

Stacey Simms  40:03

All right, so what's next for you? What's next for you at NASA? What are you doing now? Where would you like to be in a few years?

 

Ernie Prado  40:11

So that's always kind of a hard question for me to answer.

 

Stacey Simms  40:15

I feel like it's a job interview. I didn't mean to phrase it like, yeah,

 

Ernie Prado  40:17

oh, no, it's okay. It's the way I think of it. I'm the type of person that kind of sets a goal. I don't know how in the world, I'm going to get there. But somehow I tried to chart my path. And so it seemed to work out in several instances for me, so I keep taking that approach. Currently, I'm a market manager, project manager at the svms. And so I lead technical projects to build mock ups, improve them, upgrade them to approve engineering activities and training activities, I lead with outside companies, other centers, divisions, and directorates. So it's kind of this big catch, catch all integration job. And I get to meet a lot of cool, interesting people and, you know, still get to use my technical background for projects, but also get to learn about the management side of the house. So you know, dealing with budgets, and, you know, managing a project. So that was something I didn't learn in school, and it's a cool skill to learn.

 

And, you know, the first few years, it was a trial by fire because I had no idea what I was doing, I was in the technical background. So currently, I've been involved in an agency project about how to apply models, a systems engineering, to the projects that we're doing. And it's an approach that kind of takes a consolidated view of projects, including cost development, schedule, requirements, activities, you name it, everything goes into one single source of truth. So that that's a neat project. And it will be reported to the agency headquarters here, by the end of the year, I really don't know where I see myself at though, I know, I'd like to continue here. And just keep being involved. And, you know, giving my small contribution to, to what I think is man's greatest mankind's greatest endeavor, you know, it's just an honor to be here and contribute to something. So I think scran and you're working amongst these, you know, so many folks that have a passion for what we do, and just they're so bright and talented. And, you know, I consider myself an average person here at you know, because there's so many bright folks out here. So, like I said, it's a hard question, eventually, if I can try to fly some knowledge base on down, and I will try to do that. I can. That's one of my goals. Right now. I don't know how it's gonna be achieved. But you know, I'm gonna work towards it. Yeah.

 

Stacey Simms  42:37

Let me ask you one more diabetes question. Ah, there are a phrase this, what would you say to somebody, maybe a 15 year old kid, maybe somebody older who's diagnosed with type one and is told, I'm sorry, but the dream you had, is not going to work out? At least not now. You are so positive about things. I'm curious, you know, how do you get past that? And what would you advise somebody else to think about if they're told, I'm sorry, but you just can't,

 

Ernie Prado  43:04

because of diabetes. So I'd say you know, at first, it's a little bit of a blow. Because some, it's something that's out of your control. So one of my friends who's a pilot said, you know, you'd be a shoo in, in the Air Force to be a pilot, because of your technical background, it sucks that you can't do it, because you're diabetic. And I was just like, I remember going. That's depressing. Um, but, you know, there, I think there are realistically some things that we probably can't do. And realistically, there's others that, you know, we're just told we can't, but we absolutely can. And so I would say, you know, fight an uphill battle, don't give up and try every single Avenue available, to try to do what you want to do. Because more than likely, there will be a way that you can find, and without folks, you know, kind of Blazing those trails. It's not going to happen. And, you know, I know, it's not the same thing. But going back to 1980, there were only male astronauts, and they used to tell women, you know, don't bother applying, you're not going to get selected. And now we have a number of female astronauts. And in fact, you have commanders like Eileen Collins, who was an incredible person to have in our astronaut corps, Peggy Whitson and, you know, Sally Ride and just a number of these very influential people that were told, you know, don't apply it. Why even try and you know, they forged the path. And because of them, now, other people are able to do that same thing with African Americans like Guy blueford and make Jameson. You know, they were astronauts, and in the earlier days, you know, they weren't selected. So I think that without butting your head against the current limitations, don't never, you know, what we can do will never be expanded. So fight the good fight. as cliche as that sounds.

 

Stacey Simms  44:57

That's a great answer. I love it. So thank you so much for joining me today. I'd love to check in with you periodically and see how you're doing. And it's just, it's such a cool story, and I really appreciate you spending some time with me.

 

Ernie Prado  45:10

Oh, absolutely. I appreciate you. Thank you for speaking to me. It's kind of cool to talk about some things I've forgotten and every day. Yeah, absolute pleasure. And I appreciate you know, the invitation.

 

Unknown Speaker  45:27

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  45:33

I will link up more information about where he is today. You can always find out more at Diabetes connections.com. I will of course include information about the super Guppy which is the project he is currently working on. He's the project engineer there. I'm trying to remember the last time I saw him you know, it's it's funny these days trying to remember when you saw anybody because of course, all of 2020 we saw nobody but I saw him at a friend's for life conference, I want to say two years ago, and I'm bringing it up because it's a little embarrassing. The last time I saw Ernie, he was chasing me down because I forgot my phone. I left it with him. And my phone also has my wallet in it. I have one of those cases where it's got my license, you know, my credit cards, all that stuff. And I hadn't even noticed it was gone. And then all of a sudden here he is running up.

 

Stacey Simms  46:18

Oh my gosh, so embarrassing. But thank you. He's just a Boy Scout, in addition to being a rocket scientist, and I do appreciate you. He's also been really great to Benny. He met Benny This is a different time. But another friends for life conference. It had to be four years ago helped me out people when it was at the Marriott maybe it was five years ago now. I'd have to look that up. But it was it was the year of the Irish dancers. Oh, my goodness. But anyway, we sat down with Ernie and we were just talking and introducing and Benny absolutely adores him and was eating this enormous dessert. I know Ernie remembers this because his eyes are so wide. It's like you're letting them eat this. But then Benny was going swimming. It was night he was doing this nighttime swim with some friends of his and they're having a really good time. And you know, you kind of need to carp up before you jump in the pool. And I was so excited to show him the next day to show Ernie that he was like 100 all night long after eating this enormous dessert. It's funny after during the show for so long, how I've become friendly with so many of you as you listen and as your guests and man that's so rewarding to me.

All right. Remember, Tuesday is our regular scheduled episode all this year. Tuesday will be the regular interview episodes with all the segments and info that we do. And on Thursdays I will have these classic episodes where we take a look back didn't expect to reminisce there at the end. But you know, as we look back on the last couple of years, that is bound to happen. So let me know what you think. I always like to hear from you. big thank you to John Bukenas from audio editing solutions. My editor who is great about taking on new projects like this, I appreciate you john.

 

Stacey Simms  47:43

Thank you so much for listening. I'm Stacey Simms. Until next time, be kind to yourself.

 

Benny  47:53

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Feb 2, 2021

When Swiss pump maker Ypsomed launches brings it's business to America, likely in 2022, it'll be with Lilly Diabetes as their partner. The Ypsopump will be the first pump in the US that only takes one brand of insulin. This week, we spoke with Mike Mason, president of Lilly Diabetes about that decision, more about how the actual pump system will work and their timeline.

Stacey also talks about how they were able to use a coupon to keep Benny on humalog - it wasn't as easy as some have said. And she has advice to make it work for you.

Plus, new A1C guidelines for kids with diabetes.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcription:

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke HypoPen, the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, Swiss pump maker Ypsomed is teaming up with Lilly Diabetes to launch an insulin pump. Here in the US, it'll be the first pump that only takes one brand of insulin is Lily about the thinking behind that decision.

 

Mike Mason  0:41

We look at this ad we don't look at it necessarily as limiting options, we look at bringing up a new option to the marketplace that as an integrated solution can provide a new way to be able to control the blood sugar. So that's how we look at it.

 

Stacey Simms  0:57

That's Mike Mason, president of Lilly Diabetes, we talked about what that integrated solution is more about how the actual system will work, and of course more about its unique proprietary nature.

I'll also catch you up on our insulin coupon experience and talk about new A1C guidelines for kids with diabetes.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show where we aim to educate and inspire about diabetes with an emphasis on people who use insulin. This year, I'm doing a heavy focus on technology. So this episode is a bit of a follow up, or maybe a partner to the one we did in January with Ypsomed. As was announced late 2020 Ypsomed and Lilly diabetes are teaming up to bring the existing YpsoPump which is used in Europe and Canada and some other countries around the world to bring it here to the US hopefully to submit to the FDA later this year, and be in the marketplace in 2022. The Ypsopump, as you heard in that episode already has a lot of features that are very popular. It's a very lightweight pump, it has the hybrid closed loop system, similar to Tandem t slim, similar to what Omni pod is hoping to launch later this year. So there's a demand for this kind of pump. But the question is what's going to happen because of the proprietary nature, as you'll hear in this interview, and as we talked about with Ypsomed, this pump will only take Lilly branded insulin.

So to that end, and did you know that I have a weekly newsletter they do. And this year, I added a poll to it, which is really very popular. I'm so excited to see this. And when we did the episode with Ypsomed,  I asked in the newsletter about your opinion on it, would you use a pump that only took one type of insulin? And I gotta say the results were really interesting and I thought kind of surprising. So 40% of people said yes if it's a great pump that is worth it 48% said maybe I'd have to feel confident about my insurance coverage and 12% said no way I thought the no way would be a bigger number so we'll keep those polls going I have a link always in the show notes about signing up for the newsletter it's very easy to do I don't spam you come on you know it's just me. I do send out a newsletter though with the week's show some thoughts about it that poll and some other information you know, as social media shows us all fewer posts frankly from the pages that we like and the people that we follow. This is a great way to make sure that you do not miss an episode and that you know what's going on with the show at all times.

Okay, Mike Mason from Lilly in just a moment but first Diabetes Connections is brought to you by Gvoke HypoPen and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke HypoPen comes in Gvoke is the first auto injector to treat very low blood sugar Gvoke HypoPen is pre mixed and ready to go with no visible needle and that means it's easy to use. How easy is it to pull off the red cap and push the yellow end onto bare skin and then hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk.

My guest this week is the Senior Vice President of Eli Lilly and company and the president of Lilly diabetes. Mike Mason has been with Lilly since 1989. we last talked to Mike on the show back in 2018. It was our first conversation about the price of insulin. And we of course bring that up here in this interview. But we are mostly focusing on the pump and the partnership with Ypsomed and what it's going to take to bring it to the US although I promise I do talk about pricing and accessibility and everything you want to know. Mike, thanks so much for joining I'm really interested to learn more appreciate you coming on and spending some time with me.

 

Mike Mason  5:04

Happy to do it, Stacy, appreciate what you do for people living with diabetes.

 

Stacey Simms  5:08

Let's just start by talking about the partnership here with Ypsomed. How did this come about? Tell me about that, you know, the basics. And I guess we could start with really just, you know, why are you at really excited about this?

 

Mike Mason  5:21

Now we're excited about it. I mean, what we do is we step back, and we take a look at where the unmet needs are in the marketplace, today, and then how science and technology is developing. And what we saw was that, unfortunately, a good percentage of people who who live with type one and type two diabetes for own insulin are not in good control. And so we saw an unmet need there. And we saw enough advancements in cgms, as well as technology that we felt that putting insulin together with a CGM, and in good software and analytics, that we hope can provide better outcomes with really less burdensome for someone who lives with type one or type two diabetes. So that's why we were interested in getting into this space. And as we were looking at options, we thought it was best for us to pursue a partner that had a good pump that was on the market today, who was an excellent developer and manufacturer of pumps. And we found the perfect partner in Ypsomed. So we we really liked their pump. They're an excellent Swiss bass manufacturer, and we think it's a good cultural fit for us, we think we really will work quite well together. And we're both very customer focused and want to make sure that ultimately, what's most important is helping people who live with diabetes achieved the control,

 

Stacey Simms  6:49

before I asked you about the functionality of the pump. And before I asked you about the features of the pump, and more about the partnership, I'm just curious if we could go back, I was at the blogger event that Lily had in Cambridge, in 2018, where you showed us kind of the prototype of a pump that you were working on with a different company, can I ask, What happened to that is that not going forward in any way, shape, or form now,

 

Mike Mason  7:13

oh, we very much hope that that product goes to the marketplace, the rights to the DEKA pump has gone back to DEKA, we really value our partnership with them. We think it's a very advanced pump. And we think it could really help people living with diabetes. And we know the DEKA is advancing, planning on, you know, advancing that pump to the marketplace. For us, we reflected back on how we can, you know, best use our capabilities to help people with diabetes and other therapeutic areas. And as we were facing COVID, we reflected on our ability to develop a new antibody in nine months and get that to the marketplace and manufacture that and we felt that as a company, our development, and manufacturing focus should really be on developing new medications versus new new pumps and new devices like that. So we decided our deck arrangement, we were responsible for the manufacturing and a good part of the development. And we felt it was better for us to find a partner who already had a pump, who is a manufacturer and developer, and for us to say primarily focus on building the integrated system and really having that experience with the people living with Type One Diabetes and type two diabetes.

 

Stacey Simms  8:34

So any DEKA pump that goes forward, will that still be used with the proprietary cartridges that we're going to talk about down the road? I mean, it's slowly still involved with the DEKA pump whatever comes to market, or is it basically all in their hands now,

 

Mike Mason  8:47

it's in their hands at this point.

 

Stacey Simms  8:49

Let's talk a little bit more about that. Ypsomed partnership. As you listen, we did an episode with them. They went through a lot of the factors and different functionality of the pump. So I'm not going to go through that all again here. But I am curious, Mike, if you could talk a little bit about the algorithms in the pump. In other words, how might it be different from the other pumps that are coming to market tandems control? IQ software is one the Omni pod horizon, that sort of thing.

 

Mike Mason  9:14

Yeah, I mean, I think algorithm will be critically important at the end of day what's what's most important is that you you build an integrated system and cannot help someone achieve better control. And what we think is we can use our 97 years of experience with insulin to build algorithms that that do a very good job of controlling insulin and blood blood sugar. And so that's our plans if we as we develop new products like Lyumjev our new ultra rapid insulin. This provides us to potentially provide unique algorithms that can really maximize the potential of a product like longevity.

 

Stacey Simms  9:52

So let me ask you the the biggest question for my listeners is all about the proprietary nature of the pump. And before we get into that, let me just ask you a few details about it. But only use humalog or will it use other insulins you mentioned, Lyumjev things like that.

 

Mike Mason  10:06

Yeah, let me tell you a little bit about the pump and why we were excited about the pump, we think it's a very good form factor. It's a small pump, it has a kind of icon based screen that makes it very easy to use for people who were. But one of the most interesting parts of the pump for us was the fact that they  that uses a 1.6 millimeter cartridge. So it's a prefilled cartridge, that then gets plugged into the pump. And what that allows is allows someone to change if their reservoir goes down. So if the cartridge runs out, they can add new insulin independent of their infusion shed change. So if you think about the future of infusion sets, we think that will grow from three days to longer than three days, just like we saw the wear of cgms increase. Well, that doesn't help if your reservoir if you have to change your infusion set every time you use your your reservoir up. And so we believe that the 1.6 ml cart and the fact that they can, you could do kind of a hot change and change that independently. infusion pump should be a really nice feature for someone living with Type One Diabetes, or even in particular type two diabetes who uses larger amounts of insulin on a daily basis, be able to get the full life on an infusion set and be able to add insulin very easily into the pump. So that was one of the primary features that we liked. And so right now that 1.6 ml cartridge isn't on the market. And so in our press release, we communicated that we needed to make sure that we did launch that 1.6 ml cartridge in our insulins, both humalog and loon jet to make sure that that people could use our products in that pump.

 

Stacey Simms  11:51

When it comes to market. It will only let me ask it this way. Right now in Europe and in Canada, though it takes the prefilled cartridge the same pump of novo, right I mean, these 1.6 milliliter cartridges exists elsewhere. This is a US only type of modification. Is it a different kind of pump that's manufactured in the US? How does that happen?

 

Right back to Mike answering that question. But first Diabetes Connections is brought to you by Daario health. The bottom line you know you need a plan of action with diabetes. We've been really lucky that Benny's endocrinologist has helped us with that and that he understands the plan has to change has been he gets older you want that kind of support so take your diabetes management to the next level with Daario health they're published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one see within three months at a 58% decrease in occurrences of severe hypoglycemic events, try Darias diabetes success plan and make a difference in your diabetes management go to my dario.com forward slash Diabetes Connections for more proven results and for information about the plan now back to Mike about how the mechanics of the proprietary nature of the pump will work

 

Mike Mason  13:17

well in the us right now there's that 1.6 ml cartridge isn't on the market place so we'll have to see you know is that advances is still kind of early on in development so we don't really know what instance will be available in the US for this you know in this cartridge size. But what do you think is important is first of all, I don't think anyone should be worried if they're on novels insulin or any other instance there's going to be plenty of pumps really good quality pumps for them to use so I wouldn't have you know anyone be concerned about their ability to have a high quality pump to use with their insulin what what we see is we we see an opportunity to provide a you know, an integrated, very simple to use pop another option for people living with type one and type two diabetes to have a an integrated, simple experience to improve their their blood control.

 

Stacey Simms  14:08

Yeah, no, I think it's it looks like a fantastic pump. It's tiny, it's light. I know people in Europe who used to love it. I love the idea of having more pumps in the United States. But just to be clear, so I guess the the question about the proprietary nature that we keep referring to is it just because there's no prefilled cartridges of other insulins available in the United States? I mean you probably cannot answer this so I'm gonna say this out loud and you can say no comment or nothing but if I have a yep so mid pump that is approved in here and let's say 2022 and I bring in novo rapid or you know Novo Nordisk branded insulin from Canada in the same kind of glass insulin cartridge and I stick it in the pump I've made my IP so med Lily pump now compatible with other insulins.

 

Unknown Speaker  14:56

Okay, didn't you comment on that

 

Mike Mason  15:00

Wow, yeah, you're expecting a lot of people moving bringing product over from from Canada, I, you know, it's still we're still very early on in our apps is at this point, things are gonna have to develop and we'll get a better answer that question down the road.

 

Stacey Simms  15:14

Got it? Okay, I know, I know, you cannot speculate you have to be so careful on what you say. And I appreciate you coming on and answering these questions. But I mean, I'm sure you can understand in a market that has three available insulin pumps in the United States that when one comes in, people have questions about why should I switch to him? And the biggest question that I have seen is, well, pumps usually have a four year warranty. And my insurance changes every year, whether I have with the same insurance or not, the terms often change, including what insulin they want me to use, we just went through this with my son this year, we had been using one type of insulin for a long time, and they switched us to another brand. And, you know, it's disconcerting, and it's a little, you know, it's, it would make I'll be honest with you, Mike, it would make me hesitant with the United States healthcare situation being what it is right now, to go to a pump, that would lock me into one kind of insulin, you guys have got to be thinking about that. What are the discussions? Like? Can you share anything about that?

 

Mike Mason  16:12

Well, let me tell you kind of how we think about I mean, we, our goal is develop an integrated solution, I kind of look at it a little bit like the computer market, where, you know, early on, you know, you were able to and you still can today is build a an integrated system, you know, you can pick the monitor, you want the processor you want. And my brother continues to do that. And he has a great computer that works really well for him. And for myself, that's not what I'm looking for a computer, I've got four kids and a lot to do. And I want something that's just gonna work, I don't necessarily care what the processor is, or what the monitor is. And so that, you know, I kind of went to a Mac 1520 years ago, because it was simple solution. So it was another option out there, I think, you know, Apple provided a another option to people who needed to get work done and wanted to use a computer, we kind of look at that the same way. On the pump side, I think you're gonna have people who are want to have each component and be able to build that. But if we look at some segment of the market, and in particular those people with with type two diabetes, we believe a simple solution can provide, you know, a real good answer for those individuals. So what we look at this ad, we don't look at it necessarily as limiting options, we look at bringing a new option to the marketplace that as an integrated solution can provide a new way to be able to control their blood sugar. So that's how we look at it.

 

Stacey Simms  17:40

So let's talk a little bit more about that integrated system. When I spoke to Ypsomed, they talked about it using a Dexcom having a very robust app, it looked like you were able to bolus by phone or you would be by the time it comes to the United States. Is the partnership with Dexcom exclusive or do you think you might work with other companies like Abbott, you know, on their libri and different cgms that could be integrated into the system?

 

Mike Mason  18:04

Yeah, right now it's a three way partnership between us and and you have submit and then with your leveraging Dexcom CGM. At this point, we'll have to see how things progress and whether or not we bring Abbott or other CGM into the system.

 

Stacey Simms  18:22

Ypsomed is also very much a pen company. And when I remember in that 2018 event that I've talked about before, Lily was also talking about integrative pens and things like that. Is that part of this deal here too? Or is it just a pump?

 

Mike Mason  18:36

Now, this was just an exclusive partnership.

 

Stacey Simms  18:38

So when when you were looking at it, so med pump, as we mentioned, it's very light, it's very intuitive. Have you tested it? Or have they tested it in the US market yet? Is that something that you'll be doing in terms of, you know, human factors and how people respond to it? And that sort of thing?

 

Mike Mason  18:53

Yes, we have to, you know, it'll be submitted to the regulatory agencies in order to gain approval in the US market. And as part of that, it will be tested in the US through human factors. And we think it will, will do quite well. We've done a lot of market research and interviewed people who use pumps are who are interested in using pumps. And we think that the attributes of the product are going to be well received in the US market. You know,

 

Stacey Simms  19:19

again, I don't know how much you can answer on this question. But when you bring a pump like this that's been used in many other countries for several years, is the testing different than say, you know, what you were what you were originally planning from Cambridge with the DEKA pump, a brand new pump, something that hadn't been on the market yet. I would imagine that it's a I don't want to say a little smoother, but it's got to be different. When it's already been out there and used in 1000s of people.

 

Mike Mason  19:42

The information is helpful, but the application is similar for every pump, no matter where it's approved, or whether it hasn't been approved before. So you know, the FDA requirements are the same no matter what

 

Stacey Simms  19:52

got it. I'm curious to know the cartridge that we've been talking about that isn't available in the United States yet. Are there other applications For Lilly for that, I mean, that 1.6 unit cartridge? Is that something that could then be used in pens? Are there other uses for it? Or will you be making it just for this pump?

 

Mike Mason  20:09

I mean, initially it will be used for this pump or any other device that uses 1.6 volt cartridge, you will evaluate every time you put a new form factor of insulin out there, we'll look and see if there's other opportunities that better meets the needs of people living with type one and type two diabetes. So we'll see no immediate plans at this time.

 

Stacey Simms  20:28

Okay, are there other devices that use it currently, I'm not familiar, not currently.

 

Mike Mason  20:32

But it's no reason why someone couldn't produce a third party, you know, we usable 1.7 card. That is

 

Stacey Simms  20:42

it's interesting. You mentioned people with type two quite a bit in this conversation. And I know in my conversations with manufacturers with tech companies, more and more people with type two are using insulin pumps and are using devices like Dexcom. And you In fact, I'm really trying to talk about more people who use insulin rather than the specific types. We talk about devices like this, which honestly, it's kind of hard for me after all these years. Can you talk a little bit about the appeal to that market? How do they use this kind of pump? In other words, most people I know with type two who need insulin, don't bolus for every meal, they don't necessarily use the same amount of insulin as type with people with type one. I'm curious if there's any information you could share on that market?

 

Mike Mason  21:21

Yeah, I think what we see is, first of all the needs while the disease is different, the needs of someone to control their blood sugar, both for postprandial as well as for basil is still there, especially for those who are later stages other type two diabetes. And so we feel that no matter who someone is, if they're on insulin, the big thing they want is to kind of stop thinking as much about taking insulin three or four times a day, you know, that's something that weighs on a lot of people mind. And we think it's important to be able to reduce that burden, but also improve care. And that's what we think, integrated insulin management system can do that's wrapped around a pump, whether that's for type one, or type two. Now, your question around, you know, what's different about type two diabetes, the big difference is the amount of insulin that they take on a daily basis. And because of that, I think the reservoir size and the ability to change that independent of the infusion set is an important feature of this pop and one that we think both type one and type two, but in particular type two beddings can really,

 

Stacey Simms  22:33

you know, it's interesting, when I spoke to the folks at Tandem recently, they brought up their control IQ software for people with type two, and how it's really helped. Because most of the time, it's just that people with type two aren't bolusing for their meals, or for correction dosing. And so being able to have that automatically has really helped. It's something that I mean, just conversationally, it was something that I really hadn't thought of, with an automated system like that. It's interesting. Yeah, it's

 

Mike Mason  22:56

interesting, when we speak a lot with people using insulin, the needs on a daily basis aren't that different, and the thought process and how they manage that, you know, isn't that different, but you're right, you know, and unfortunately, taking insulin is very complex, and it changes on a daily basis, as you know, well, and that's what we hope, we hope we can alleviate some of that burden that people have of controlling their blood sugar and their and their diabetes. In the

 

Stacey Simms  23:24

United States. You know, anytime a new product comes to market, in addition to submitting to the FDA, you have got to work with the insurers to get these things covered. And I'm curious if your conversations about getting the med pump insured, also factor around making sure that anyone who ensures it can make sure going back to what we asked about at the beginning. We'll also cover Lilly insulin as a some kind of package. When I spoke to the CEO of episode med, he had kind of implied and this was speculative, and he admitted that, but he was kind of hoping I guess is the way to say it, that it would be more affordable in the United States because it could be packaged up with healthcare insurers. Any thoughts on that?

 

Mike Mason  24:05

Yeah, I mean, I mean, first of all, we'll make sure that there's obviously insulin supply for for the pump. And so we'll make sure that that comes hand in hand so that someone doesn't have a pump that they can't use their insulin on. So what will definitely solve that problem, as we go to the marketplace, I think, you know, we haven't had any specific discussions with payers on this particular product just yet. But what we've had, generally, in this area is you know, payers are frustrated with their ability to help their members get good control on insulin. And they believe that that better control on insulin can lead to better overall healthcare cost. If you look at the total cost of the therapeutic and devices as well as all the cost of office visits and the very costly, you know, company Patients have diabetes. And so they're excited to not only provide better care of the hope of better care, but also the hope of reduced total medical costs.

 

Stacey Simms  25:10

As we start to wrap up here, just a couple more questions. I got notification, we saw some ads on social media about this is separate from the pump about renewing any coupons for the new year. Can you speak to that a little bit? While I've got you here, you know, for 2021, the lily coupons that are out there? How do people do that?

 

Mike Mason  25:29

Yeah, all they need to do is call our Lilly diabetes Solution Center. If anyone has trouble paid for a Lilly insulin, you can call up early diabetes solutions center. It's staffed with people who are healthcare professionals who will understand the needs and be able to get your solution on the phone or to email that to you with without any paperwork to fill out or anything like that. And so if they do need if one of the things they need is that to get an updated coupon, they can just literally call them and we also are putting more and more options on the website. And we can get you more information on that. Stacey.

 

Stacey Simms  26:06

Yeah, that'd be great. If you could send me the links. And I'll I don't know, Mike, if you know, but I wound up using that coupon in the fall. Oh, yeah, as I said, My insurer switched us we switched in September to a new insurer. And they wanted us to switch to Nova log, which we hadn't used in many years. And I'll be honest, is a little bit of an experiment, I decided to try it. For whatever reason, it wasn't that easy. It took me a couple of weeks that I needed. prior authorization my pharmacist helped out it was we went back and forth quite a bit. But we did get it done. And I'm back to paying about $35 a month for Benny's insulin for my son's insulin, which was great. But it kind of brought me back to the conversation I had on a conference call with Andy Viacari  Last March, I want to say when you know, COVID had first hit and we were all really concerned about and unfortunately, it would bore out with employment in the economy. And the question I asked him at the time was just why not do away with all of these coupons. And because it really while it was difficult, I was able to use it would not have been able to get the Lilly insulin without it with my new insurance. So it did work. But I asked him at the time, I'll ask you now, why not just lower the price across the board to $35? And make it easy for everybody?

 

Mike Mason  27:19

Yeah, I mean, for us, it's a complex healthcare system out there. And we lower lowest price which we have was Insulin lispro that's one of the options that we've had, we dropped our list price by 50%. And, you know, we think that the sweetest solutions that we have, you know, with lowering our list price with listen into the lice pro as well as all the options that we have that are very targeted at the gaps in a system, which is the uninsured people, high deductible plans. And Part D, that we can create the best possible out of pocket experience, no one should have to pay more than $35 for literally insulin 43% of people who usually insulin doesn't pay anything for based on the health insurance. So, you know, we've looked at the problem. And we believe that this is the best solution we have out there.

 

Stacey Simms  28:07

I mean, I hear you, I get it, it's very complicated. You're not operating in a vacuum. But you've said several times that you want to help people get better control, the insurers want to get people in better control. One of the reasons people aren't in great control is because it's really expensive, even though, you know, if you have insurance, you're paying for it, you're paying for the high deductibles. I don't need to tell you we've had these conversations many times before. But I got to believe that this is not a sustainable system. And you know, I don't really have a question there for you, Mike. But I really hope that next year, we're not having the same conversation. And I know you don't want to have it either. So you know, I'm not not because you don't want to answer the questions, but because I I imagine that you know, that even if the price was lowered to $35, that Lilly would be fine. In business.

 

Mike Mason  28:51

I mean, first of all, if anyone has any concerns with, you know, 40 million insulin, call our Lilly diabetes solutions center, you know, with the most recent Part D demo project that the CMS introduced in January this year, no one whether you're in Part D, or commercial or uninsured and have to pay more than $35 for the insulin. You're right. I don't think the healthcare system right now is sustainable, whether it be for diabetes or other chronic diseases, we shouldn't put the medications that are designed to improve quality of life and to reduce overall total healthcare costs. We shouldn't have those at a high price that people can afford. And so I hear you know, that we are advocating strongly and working with our other healthcare system partners, whether that be you know, pbms and insurance companies as well as employers and the government on this topic, and it is a very important topic. And I hope, you know, as the Biden administration comes in, that we can have very good conversations and make progress.

 

Stacey Simms  30:00

Mike, thank you so much for spending so much time with me. I know I kept you over a few minutes and I appreciate you you're hanging on and answering those questions. Thanks for being here.

 

Mike Mason  30:07

Thanks, Stacey appreciate it. appreciate everything you do for people living with diabetes.

 

Unknown Speaker  30:16

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  30:21

More information about Lily and Ypsomed their partnership at Diabetes connections.com. The episode homepage, of course, has a transcript and more information, lots of links. But this is a story that we will of course, be watching over the next two years until this pump comes to market who knows what it will really come to market as things change along the way. But I'm fascinated by the proprietary nature as you can tell, because I'll tell you our Insulin story and in just a couple of minutes, you know, if you're using one type, your insurance company can switch you to a different type, it can be very difficult.

So we'll see another point I just wanted to mention, I didn't bring this up during the interview. But when Mike talked about the uniqueness of being able to change the cartridge, independent of the inset, there is something unique there about the YpsoPump, and I'll talk about that in a second. But it's not exactly as he explained it, you can do that with any tube pump with the Medtronic that are out there right now with the Tandem t slim any tube pump the way we have done it and we have always done it since using atomists. Gosh, almost 14 years ago. Now, when the cartridge runs out of insulin, we change the cartridge. When the inset hits three days, we change the inset and we don't do them together. Not everybody does it that way. Many, many people change them together, they have worked out exactly how much insulin they need, or they just feel more comfortable doing it together. Whatever is your pleasure. But the thing about the episode med pump that is different. My understanding is that when you do that you do not waste the insulin that is in the pump tubing, there is a different way there is something about it. That means you do don't have to push through and prime all of that insulin because I know what the Tandem you do waste insulin because of all the priming. So I just wanted to kind of clear that up and address that. As you listen. I know many of you were thinking that's not unique, but that's what he's talking about.

I have also reached out to DEKA, that is the company that was originally partnering with Lilly, we mentioned that the interview to have a new pump and pen system in the US is very different looking pump, it was cylindrical that was I don't know if that's the right way to say it like a disk, it looked almost like a tiny tin, you know when that's coming to mind is like a tobacco chew tin. Or maybe maybe mints is a better way to put it like almost smaller than your palm, but small, thin and circular. And that was the pump that they were working on really interesting. So I've reached out to DEKA to see if they're going to continue that work. And DEKA, just as an aside is the company from Dean Kaman D. k. Dean came in. He is the person who invented the insulin pump years and years ago, very first one and he's invented a bunch of things, including the Segway. So I'll link up stuff about him to very interesting, I'd love to have him on the show. But that's neither here nor there about Lilly.

I do know that many of you get frustrated when we talk to them, because you want me to just talk about insulin pricing. As you can tell, you know, Mike says what he's going to say. And I will continue to ask about it. We'll continue to talk about it and send me your questions. I'll see whatever I can do our insulin story coming up in just a moment. But first Diabetes Connections is brought to you by Dexcom. And it really is hard to think of something that changed our diabetes management as much as Dexcom share and follow. It is amazing to me that it helps us talk less about diabetes. And that is really one of the wonderful things about share and follow as a caregiver, parent, spouse, you know, whatever, you can help the person with diabetes manage in the way that works for your individual situation. It's about communication, and finding out how they want to share the information. Even your kids this is a decision that you can make together and talking it out really, really helps internet connectivity is required to access Dexcom follow separate follow app required. Learn more at Diabetes connections.com and click on the Dexcom logo.

 

In our innovation segment this week, I'm going to get to our Insulin story. But I also want to mention that there's new guidelines for the A1C when it comes to kids. This was kind of quiet. I was surprised it didn't get a lot of attention. I posted it on social and it was kind of met with a big shrug. The American Diabetes Association has lowered the target A1C guidelines for children with Type One Diabetes. I will read from the summary here. The goal in recommending stricter glucose control was to ensure children with type one have better immediate and long term health outcomes with fewer health complications and reduced mortality rate. The number has gone from 7.5% for children to less than 7%. And I think as you listen you know, the podcast audience, frankly is extremely well educated you guys are up so much stuff. And many of you are already striving for less than seven, you're striving for less than six. We are not striving for less than six. But I think that this is something that many of you are saying, Well, of course, but I gotta tell you, I'm a little disappointed in the way they released this.

They talk about why they say things like these stringent measures are not always practiced by caregivers of 20 patients or diabetes providers due to concerns and fear, it may cause sudden or dramatic drops in sugar levels. And promise, I'm not gonna read the whole report, but they don't talk about better education. They don't talk about access to CGM, to insulin pumps to integrated systems. There's no wording here in the reports about cost, or making sure you have an a pediatric endo, who will give you these things and educate you. I got really annoyed, frankly, reading this, and we'll revisit this, I'll probably reach out to some of the endos who worked on it, I hope to and talk about Yeah, guidelines are great goals are great. But how are you really going to get us there? Because we all know that the A1C needs to be lower right? I am hoping that some of you who have kids with an eight or higher A1C are nodding and going, Yeah, well, what about help for me? How are we supposed to do this alone? I just don't think it's enough to say here's the number. I think they need to give much more help and support. Maybe that's a pipe dream. I know, most pediatric endocrinologists are great people who really want to help. And you know, they see us for this teeny tiny amount of time. But let's follow this one along because it's just it's, it's just so frustrating to know that we have a place we want to be, but how do we get there?

And you know, one of the reasons we get there, and Mike said this in our interview is, you know, we need to make sure people have better access to insulin, so they can live better with diabetes. Well, sure. We went through this recently in my family and I will not go through this beat by beat I did like 10 or 15 minutes on this as a Facebook Live and told the story about a when we were switched, our insurance company switched us from humalog to Novalog, I told the whole story very lengthy double not do that here. I'll tell it in a shorter way. If you want to see the whole story, I'll link it up. But I realized I never told the rest of the story here on the actual podcast.

So here we go. In the fall, in early September of 2020, we had a change in our insurance, a change of employment meant we were now buying our own insurance. And we actually had a great experience. We did this several years ago and had a disastrous experience. It was so expensive, and nothing was covered. I was really excited that this time around, we found something great. We used an insurance broker. And I would highly recommend that maybe we'll do a show on that I'm making all sorts of notes on future shows. But somebody helped us he didn't know a lot about diabetes, but he knew what we needed. So that was great. And my husband lives with type two as well, as you likely know. But this new insurance company did not have human blog as the one they wanted us to get. It was no vlog. And I posted the pricing on social media. It was like, you know, $35 a month for Nova log, and 13 $100 a month for human log. So it was quote covered, but you know, at a different rate. And we were going to go ahead and do that Benny had used Nova log for I want to say the first seven years of his diagnosis, and then our insurance switched us. But he's been doing really well. Everything's chugging along, and I thought, Gosh, I really don't want to switch him.

And I was kind of at sixes and sevens not really knowing what to do. And I was talking to my parents about this. And my dad said, I heard on your podcast that if you have commercial insurance, you can get any insulin with a manufacturer's coupon for $35 a month. And I thought Dad, you're the best. Thank you for listening to my podcast. And of course you are correct. And then that week, I spoke with beyond type one about their new website, get insulin.org. So I went on, get insulin.org and filled in all the information and a coupon popped up from Lilly. I printed it out and it said go right to the pharmacy and get your insulin. And I know how these things work. So I didn't go to the pharmacy, I called the pharmacy and said Is this legit, and they went, you know, tickety tickety tick and the computer. Sorry, Stacey, this isn't going to work for you. And I know the pharmacist there very well. We've been so fortunate. I've known him for all of Benny's diagnosis. I want to say all 14 years, it's been the same guy. So we really went back and forth and tried to figure out what was going on. It was a quirk in the way our insurance wanted to build it.

So I called Lily. They said no, it should be fine. Here's the codes to give the pharmacist everything should be fine. They called the pharmacist he said No, those codes are not going to work. And they didn't what he told me to do. And this is what worked. Our endocrinologist had to call it a brand new prescription. We were going off the old one that we'd been using, you know for the whole year many years. So he had to call it a new prescription. He had to call in a prior authorization. And then after that when they reran the coupon, it worked just fine. Everybody's different. The pharmacist and the folks that Lily told me that every insurance, every state, sometimes the pharmacies run these different ways. So if you run into a brick wall, definitely keep pushing. And I'm telling you as a listener of this podcast, if you do run into a brick wall Lily and their coupon, email me Stacey at Diabetes connections.com. Let's make sure you're talking to the right people, because it took me a while to find the people that really dig down and do this at Lilly. That's their job. And how ridiculous is this that this is somebody's job to figure out How to get around all these coupons and use them in the ways that they're meant to be used, rather than just dropping the list price. I mean, it makes me crazy to talk about, I'm already going too long. Bottom line is we got the coupon to work.

And then it worked a second time. I called my pharmacist the other day, because it was time to renew and I said, Hey, you know, I've heard that you have to renew in the new year, is it going to work? And he said, it's going through just fine. And then he laughed. He's like, let's run it without the coupon. I said, Why? Why? He was just curious. He's like, yep, it's still, you know, 13 $100 a month without the coupon. I said, Well, don't put it in without the coupon. Don't even bother. So that's the story. It leads me back to what happened if I was using the app, so pump with Benny. And then in September, my new insurance company said, No, you have to use no dialogue. And I didn't know, I didn't have a podcast. I didn't know I could do all that. I didn't know I could get the coupon or what if the coupon goes away, there's no guarantee it's going to be there. And then I'm stuck with a pump that I can't use the insulin that my insurance company makes me use. So obviously, we don't know. That's a lot of speculation. But those are the concerns I have. Have you used one of these coupons? How about the nofo coupon what's working for you guys? I'll start a thread in the Facebook group. But you can always you know, ping me and let me know what's up with you. Or if you need help that way. It's just ridiculous. Maybe next week, instead of innovations. I'll bring back Tell me something good. We need the good news stories, too.

 

As I mentioned last week, we are about to start classic episodes. The first one will be this Thursday. And that is an episode I taped almost five years ago with Ernie Prado. He is a rocket scientist for real at NASA. Great guy. It was so much fun to talk to him. He has a terrific story. What I love about his story is it's not the perfect diabetic. He really struggled. And he talks about why and how he kind of got out of that. I think it's one that as a parent of a child with type one. I love those kinds of stories because I don't expect perfection in my kid. And I really like to hear about other people who all due respect, Ernie, who really messed it up and are okay, are doing fine now. So that's on Thursday.

You don't have to listen to it on Thursday. Obviously, whenever you have time, we're going to be putting out a lot more episodes. So when you have time, listen to podcasts. We'll be here for you. thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. Until next time, be kind to yourself.

 

Benny  42:22

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Jan 26, 2021

What is it like to actually give someone emergency Glucagon? What happens next? This week, Stacey talks to Bonnie O'Neil whose son was diagnosed with T1D at age 5 and is now 24. They had a scary situation while on vacation and out of the country. Everything worked out; Bonnie shares what she learned and what she wants other families to know.

Bonnie is the author of a brand new book: Chronic Hope (learn more here). She has a unique family history of diabetes, losing a brother before she was even born and has a older sister who is still thriving today.

In Tell Me Something Good this week, a big honor for one of our favorite frequent guests and fun news if your child plays Minecraft.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

 

EPISODE TEXT HERE...

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcription 

Stacey Simms  0:00

Diabetes Connections is brought to you by Daria health. Manage your blood glucose levels. Increase your possibilities by Gvoke HypoPen the first premix auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms

 

Stacey Simms  0:27

this week, what is it like, what really happens, when you need to use that emergency glucagon, I talked to a mom who found out while on vacation out of the country,

 

Bonnie O'Neil  0:37

I was just all I could do to stop my hands from shaking and mix that glucagon and get it in him. So point number one was when you go on vacation, make sure that glucagon doesn't stay in your hotel, keep it on your person you just never know.

 

Stacey Simms  0:52

Bonnie O'Neil's son was diagnosed at age five and is now 24. She has advice about using and carrying glucagon. She also has a unique story. She'll talk about growing up in the shadow of a family tragedy with diabetes, and how she and her sister have overcome that

in tell me something good this week, a big honor for one of my favorite frequent guests. And does your child play Minecraft? Stay tuned.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show where we aim to educate and inspire about diabetes with a focus on people who use insulin. My son was diagnosed with Type 1 14 years ago, my husband lives with type two diabetes. I do not have diabetes myself, I have a background in broadcasting. And that's how you get the podcast.

longtime listeners will know that this show is not really about our experience my family's experience of diabetes week in and week out. I don't share a ton of personal information about Benny, but we do talk about our experiences. And I bring that up because I did a show recently with him to mark 14 years, which was a pretty big milestone. And we've done a couple of shows together over the years. I always say Benny is a big goofball. But you know, he's got good things to say I like to talk to him. I'm very proud of him, even though I give him a hard time. And I got a really nice review that I wanted to share. I don't ask for reviews very often. Maybe I should if you'd like to leave a review, you can send one to me at the email address at Stacey at Diabetes connections.com. You can leave them on whatever podcast app you're listening to. You can drop them in the Facebook group.

But this one really was nice. And so I wanted to share it and say thank you to Ruth Ann, who posted it following that 14 year episode where I talked to Benny and she says “I listened to it yesterday and came away feeling understood. I've had type one for almost 45 years diagnosed at age 12. Then he was honest in the way teenagers can be when they don't feel pressured to spin things to make other people happy. I found him incredibly inspiring.”

She goes on to write “To me The message was you can be upbeat about life. But don't succumb to pressure to sugarcoat the hard realities of managing type one. I think being real is the healthiest approach to coping with a challenging chronic illness. Please tell him thank you from a grandma in Utah, Ruth.”

And I will say thank you to you. That meant the world to me. I agree. I think it's so important to be honest to write that line of diabetes can't stop you from doing the things you want to do. But it will stop you and slow you down sometimes right not to sugarcoat things too much. I really appreciate you taking the time to write that down and share it with me. And of course, I will share it with Benny and Wow, good luck to you. 45 years with type one, you're the inspiration. If you would like to tell us something always happy to get nice messages like this. I'm always happy to take constructive criticism as well. I do have a few people over the years who have yelled at me. But I think I'm pretty easy to find either on social media or via the email address. And you can always go to Diabetes connections.com and get all the contact information there. But Ruth boy you made my day

All right, we're gonna talk about using glucagon what that is like, and Bonnie's really interesting story in just a moment. But first Diabetes Connections is brought to you by Dario health. You know, over the years, I find that we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. And that's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you all the strips and lancets you need delivered to your door one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions for how to succeed, get the diabetes management plan that works with you and for you. Dario has published Studies demonstrate high impact clinical results, find out more go to my radio.com forward slash Diabetes Connections.

My guest this week is here to talk about using glucagon and I think we can all From that, but she has another important story that I don't want to gloss over. Bonnie O'Neil has been part of the diabetes community since before she was even born. bit of a warning, this may be hard to hear Bonnie's older brother died when he was eight, his type one went undiagnosed until it was too late. Now, this was back in the 1960s. But we know that's still gonna happen today. Her older sister was later diagnosed, she survived and is still thriving now. And Bonnie has a new book out. It's called chronic hope. So there's a lot to unpack here, including that very valuable information about her family's experience with glucagon. I found this to be a very valuable and eye opening conversation. And I hope you do too. Bonnie, thank you so much for joining me. Congratulations on your book. And I'm excited to learn all about you. Thanks for jumping on.

 

Bonnie O'Neil  5:48

Thank you for having me. I'm excited to be here today. Stacey,

 

Stacey Simms  5:51

tell me about your son. But he's doing now because he was diagnosed as a little kid. And he is all grown up now.

 

Bonnie O'Neil  5:57

Yes, I've lived all the stages with him. So he was diagnosed as a five year old and he is now 24. So he's living not too far away from me about 15, 20 minutes, which I guess is every T one D mom's dream when their kid grows up that they live independently, but yet, we can still get our eyeballs on them and our arms around them from time to time. So yeah, he's doing great.

 

Stacey Simms  6:22

You it's funny because being diagnosed, what does that 19 years ago? Isn't that long ago. I mean, my son was diagnosed 14 years ago. But in some ways, it feels like a different world. Do you mind taking us back to that time, if you could tell us the diagnosis story. And I'd love to also talk about what you all started in terms of management.

 

Bonnie O'Neil  6:41

Sure, yeah, that's actually an interesting story. So I have diabetes in my family. So my brother was unfortunately died in the diagnosis process when he was eight years old. And that was before I was born. And so my parents had me in their 40s, basically to, you know, replace the child that they had lost. And then my sister was diagnosed when she was 16. And I was eight years old. And so I just grew up with it. We grew up with this fear of it being there. So I was always on the lookout for it. And I remember my first pediatrician when I want to have my first child, I said to him, so how do we test for this thing? Because I don't want it to be in in my child. This wasn't Austin. This is my oldest son, Alexander. And, and he's like, oh, Bonnie, you know, it comes on acutely. We can't just run a blood test every every few months, but you'll know it if you ever see it, frequent urination, and intense thirst.

And so I was always looking and so the day that I noticed that in my son, Austin, you know, obviously, there's the major panic, but I had grown up through my three pregnancies, I had done the urine testing for gestational diabetes. And so I knew exactly what to do. I went to the pharmacy, I bought a test kit, and I dipped Austin's urine in it, and it turns deep crimson. And so I diagnosed him at home freaking out going to the doctor and saying, they're like, calm down. This is Odile, like it, maybe it's not type 1 diabetes. I'm like, Well, do you know what else it could be? And so we, you know, I bundle up the three kids and we're living in Connecticut at the time, I took them over to the pediatrician. And he didn't have ketones, because we caught it so early. And so their practice was leaning into something that they told me was what Yale was practicing at the time, although I have an endocrinologist friend from Yale, who assures me they never offered, I suggested that, but the thinking was, if your child doesn't have ketones, you don't admit them to the hospital. Hmm.

So we went home, we literally went home without so much of the shot of insulin. As you can imagine, I was just freaking out because my brother didn't make it through his diagnosis story. So I was like, you know if you can remember Terms of Endearment and Shirley MacLaine, like shaky over the crib. Yeah, that was me that night, just like leaning over my son and just making sure all night long that he stayed alive anyway, that the pediatrician, the endocrinologist that my pediatrician was able to find for us was one who really didn't work with pedes. The youngest children they saw were really about 15 or 16. So we saw him The following day, and the long acting insulin that he gave him was Lantus.

 

Stacey Simms  9:37

I was wondering if that was even approved, because I remember was not really 2000 so it was for little guys.

 

Bonnie O'Neil  9:43

Okay, it was not it was it was not under age 10 and so I don't I didn't know any of that you know, and so, so that was the first there's two things that were very interesting in our in our care different so that was the one and then when we got to CHOP the Children's Hospital. Philadelphia. A week later, I forgot to say all this diagnosis happened exactly one week before we moved house from Philadelphia. Oh

 

Stacey  10:07

my god,

 

Bonnie O'Neil  10:08

I never recommend that moving house be part of your diagnosis to be that as it may that was our case. And so when we got to CHOP our the endocrinologist there was actually very keen to see know what would happen to this child being on Lantus at age five, I'm pretty sure that it's going to work out well, I can't prescribe it. But he came to me that way. So I can leave him on his protocol. So that was interesting. And it worked beautifully. So my son never used NPH. And I had friends at that time, who were very familiar with that insulin and just told me how fortunate we were that he never had to be on that. So that was one thing. And the other was, so my sister, the reason I gave you the backstory on my sister was that I grew up in a family of using exchanges, where you counted your you didn't count carbohydrates, but you looked at food, in terms of whether it was fat, or protein, or carbohydrate. And you gave each one an exchange. And so I was used to that world. And I literally was given a counting book that had both on it, it was the exchanges and the carbs. And it was kind of you could do it however you wanted. They were recommending I just use the carbs, but the exchanges were there as well. So that was interesting. Oh, and then there's a third one.

 

Bonnie O'Neil  11:33

But I remember. So his diagnosis was shortly after the DCCT trial, results came out and talking about intensive insulin therapy and how important that was. And I remember several visits, going in and talking to my CDE and saying, I'd really like Austin to be on that intensive insulin therapy. And she would, she would look at me like I had 12 eyes and like to say something, and I didn't understand what she was saying. And she didn't understand what I was saying. And it was many months later that I realized that Austin was

 

Stacey Simms  12:11

using Lantus and short acting together. Yes, exactly, was

 

Bonnie O'Neil  12:14

exactly. So yeah. So I was sort of living in some a couple of old paradigms and had to get with the program pretty quickly. Yeah,

 

Stacey Simms  12:22

but what a transitional time. Here was that that he was diagnosed,

 

Bonnie O'Neil  12:26

it was 2002. Yeah. And I'm so thankful I that is it is that so spot on Stacey, because just a few years earlier, and and the story would have been very different. My sister's story is very different. Sure.

 

Stacey Simms  12:37

And let's talk about your family for a moment. If we could be there's so much information there. You mentioned your brother, gosh, I can't I'm not even sure what to ask. But he died before he was diagnosed or during his diagnosis story. Was

 

Bonnie O'Neil  12:48

this in the 70s? The 80s Yeah, it was 1962

 

Bonnie O'Neil  12:57

Yeah, yeah. So my sister was six years old, my my sister Barb, and my sister Johnny, my brother, Johnny was eight. And so it was Christmas week, and my sister had the stomach bug. And a couple of days later, after she got better, my brother started throwing up. And they assumed that he just had the stomach bug as well. And he may have had that, but it clearly he then slipped into decay. And so by the time he got to the hospital, which was actually New Year's Eve, what he was in a coma. And so he passed away three days later, to make the story even more unbelievable. My mother delivered my sister Betsy, just nine days after that.

 

Stacey Simms  13:43

Oh my gosh. Oh my goodness. Yeah. You know, DKA is I don't have to tell you this. You know, it is the most dangerous time for people with type one and it's amazing to me how now. Gosh, we are you know, more than 50 years after what happened with your family with your brother? Yeah, we are still having something like 30 to 40% of people who are diagnosed with type one diagnosed in DKA, I know you work a lot are you you've written a lot with beyond type one. You know, are you involved in efforts? Do you see the you know the DKA awareness that's something that you you talk about.

 

Right back to my conversation with Bonnie and we are going to hear her talk about glucagon in just a minute or two. And when you hear her talk about the emergency redbox, please remember, there are more options now and Diabetes Connections is brought to you by one of those by Gvoke Hypopen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary and that's where Gvoke Hypopen comes in. It's the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use. Find out more go to Diabetes connections.com And click on Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma, visit Gvoke glucagon.com slash risk. Now back to my conversation with Bonnie and I just asked her about her family's tragic experience with DKA and how that's influenced her with what she does now in the diabetes community.

 

Bonnie O'Neil  15:22

Yeah, I mean, I do write for beyond type one, and I'm very active with JDRF. I'm on the board of the founding chapter, the greater Delaware Valley chapter. And I know that we're doing a lot of advocacy work around that and, and even just trying to get the shift in titling someone has type 1 diabetes, a JDRF, has done a lot of work around that, and is seeing that that shift so that it's, you know, reframing it, so it's not Oh, they got diabetes, or my son didn't get diabetes on June 19 2002. That was when we discovered that he would be insulin dependent for the rest of his life. He was developing the disease before that. And so we're trying to change that language. I think we're making progress. So that there's there's an understanding that you are, you know, certainly with some of the antibody tests, that testing that is being done now to be able to know that, you know, this person's body is being set up to get the disease, you know, if you have, I think it was three out of the four markers. It's, yeah,

 

Stacey Simms  16:31

well, and I was gonna ask you about that, about T one detect, we just did a show on that. We did an episode on that a couple of weeks ago. And when you think about something like that a person who has type one in their family, like you had and was so front of mind, I would imagine that you would have taken advantage of that with your kiddos, you know, years and years ago.

 

Bonnie O'Neil  16:48

Yeah. And, you know, back then, and that was something that I asked my endocrinologist was, so should we do any sort of testing and their response, and I had to agree with it was, well, there wasn't anything that they could offer. Other than Gee, I'm really sorry, it looks like your child is probably going to get type one. So the way I've handled it now, as a mother of two adult children who don't have diabetes, is that decision is yours. If you want to be tested, we can get you tested. If you don't want to, I have to respect your decision.

 

Stacey Simms  17:25

One of the things I really was looking forward to talking to you about and looking forward as a term I really should not use there. But I was very interested in is you were one of the few people I know who has had to use glucagon on their child, and then wrote about the experience. So I really appreciate you talking about this publicly. It is a fear that so many people have, you know, we have never had to break out that red box. And I'm so thankful for that. Would you share that story with us? You're even at home, right? You're on vacation?

 

Bonnie O'Neil  17:54

Yeah. And I'd be happy to because you know, it's a it's a story that still brings up a lot of emotion in me, but it does have a happy ending. And there are some good takeaway points for your listeners in terms of preparedness. So yes, I'm happy to share the story. My family went on vacation to Costa Rica. So it was my oldest son's first year in college, Austin, that would have made him a sophomore, I think in high school and my daughter would have been eighth grade. And we realized that all the spring breaks were aligning all three kids were in three different schools. And we're like, Yes, let's go and do something fun. So we plan this, this sort of dream trip, you know, where you're going to be renting, staying in a treehouse. And like, I'd have some time at the seaside all kinds of great stuff. So adventure, but fun. Yeah, so we get there and the very the very next day, I think we got there like late afternoon. So the next day, spent a little time poolside and then decided to go to this restaurant for lunch that was literally like an oasis on the seashore. So like in the sand cluster of trees and this restaurant was in these trees on the sand. And so it's just a walk up the beach, it was probably, I don't know, 20 minutes of a walk.

We get up there. My son Austin actually ordered the only sensible meal he ordered a pizza which is cooked my husband and I ordered cbj which is raw and my other two kids ordered some sort of salad again raw and when you're in a developing country, you should go cooked rather than right anyway. So you know it was a big piece of pizza and or you know, personal pizza. And so we give this was before wearing a Dexcom so we have no arrows indicating the dress. In which his blood sugar is going, we just have a blood sugar of somewhere around 250 probably. So we have to give a nice correction dose, I have to give the combo bolus that we were doing for the pizza to accommodate for the, for the fat. So it's gonna be dripping in for a while. And I didn't factor in the walk that he had just had. So right after lunch, he and his brother asked to go into the sea and play. I'm like, Sure, that's fine. So they did about five minutes later, he came back and he said, I feel shaky. So I tested him and he was in the mid 60s. And we ordered him a coke. And he started to drink. And still his blood sugar wasn't going up. Eventually, he drank the whole big bottle of Coke, and still really wasn't going up. And I was getting a little suspicious. And then he said, I don't feel well. I feel nauseous. And then I knew we were in trouble. And your mind just immediately goes to like, the cheese was tainted. The basil on it hadn't been washed and was in was unclean. Something, you know. Yeah. And I knew that he had like, over 10 units of insulin on board. And then the next thing I know he he starts vomiting. And I mean, pardon me, but projectile vomiting. And this is one of those moments when you just snap into too high alert gear. And it's to my son, and my, my oldest son and my husband go back to the hotel, get the glucagon because of course the glucagon was with us. But it wasn't with us.

 

Unknown Speaker  21:39

Right? It was

 

Bonnie O'Neil  21:40

in the hotel, helping the pillows in case they had a low but now it was it was tucked away with all the other supplies. And so the two of them ran back along this shoreline. And I knew it would have to be at least 30 minutes before they would get back. Right? Because there and back. And actually my son got back before my husband did because the roads were so rutted and so circuitous, that it just took him forever, it seemed to get back in the car. So all the while I don't speak Spanish, I speak fluent French, I don't speak a lick of Spanish. And all of these people were trying to help me and they didn't speak any English. And they all they could do is bring towels and bags for my son. And you know, I knew that if he drank any more, he was just going to vomit it. So there was no point in trying to give him more to drink. And so we just waited. And I have never seen a sunset so fast in my life. Oh, I don't know if it was where we were located on the Costa Rica coast. I know we were having a late lunch. But anyway, it just started to get dim. And by the time my eldest son got back with the the glucagon and cuts all over his bare feet, it was just all I could do to stop my hands from shaking, and mix that glucagon and get it in hand. So point number one was, when you go on vacation, make sure that glucagon doesn't stay in your hotel, keep it on your person, you just never know. Point number two with practice that injecting or at least mixing up glucagon. Every year, when your glucagon expires before you throw it away. Don't neglect that gift of having the opportunity to practice drawing it up because I was going to ask you,

 

Unknown Speaker  23:27

did you ever do that?

 

Bonnie O'Neil  23:28

I did it every year, I never threw one away without mixing it up. Because I knew that if I ever needed it, I wasn't going to be able to stop and read the directions. I just needed to know what to do. Because the only reason you would use it is if you're in an emergency. And in an emergency. We don't think so clearly, or our hands are shaking, you might be thinking but your hands are shaking so much that you just need to go from muscle memory. So eventually my husband got their like gate. So I drew it up. I gave him the glucagon. My husband got there. And we're in the car. And I was just surprised Stacey, his blood sugar didn't come right back up. I expected it would come up to like, I don't know, a perfect 110 would have been nice. You can even give me a question 150 I'd be happy with and if it didn't, it was I don't even know if it hit at oh well. And so I remember being in the dark in the backseat of that car just like trying to get every little whiff of the glucagon out and into him.

And, and then I just realized I don't have another glucagon. I brought one. I didn't bring two and he's not in a stable enough place. Like I we need a doctor. So thankfully, this was probably the nicest hotel we had ever stayed at. And and I'm really thankful because they had a doctor on call. So we as soon as we got back to the hotel, we asked the concierge to call for a doctor and he was there. Oh probably within 45 minutes, something like that. What did he do for you? Did he give him more like IV glucose? Yeah, so he unfortunately was this big, you know, had a big headboard, big posters on it, and like a poster board sort of thing. And he just hooked an IV up to him and tied it up to the to the bedpost. And so the following morning, when he came back, Austin had a fever by that point. And he said, You know, I can't rule out that this isn't appendicitis, you have to get an emergency surgery in Costa Rica, this was not what I had in mind. And long story shorter, what ended up happening was he said, You've got to get him down to the Capitol to San Jose, four hours back down the way we had come up, you know, just two days before. So we have to do that, you know, it could have been the fever could have been from the food poisoning, which it was, but he said, you know, we have to be safe, it couldn't be appendicitis or something else. And so that was the longest four hour ride I've ever had in my life.

 

Stacey Simms  26:02

Yeah, it was not appendicitis, it turns out to just be

 

Bonnie O'Neil  26:07

a lot it was it was just the food poisoning. And he spent three days in hospital. And there again, you, as a diabetes parent know more about diabetes than emergency room physicians do. And it's important that you know that and that you believe in yourself about that. My son, his freshman year in college had to go to the ER for the stomach bug. And there to the emergency room, physicians relied on me for what I knew about how to take care of his diabetes. And so when we were in Costa Rica, the attending physician gave me her cell phone number, and said, I want you to be in touch with me. If this doesn't come around, if his numbers don't go in the way we want them to, we're going to take the pump off. And we're going to do it our way. But I will give you it was basically I'll give you six more hours, I think this was like on day two or something. Because she was letting me manage his diabetes. Right? And but then she said, You know, we're gonna do it six more hours this way. And let me know how things go. And it did it worked out fine. So here's two more points coming to my mind when you're traveling. Don't just take one glucagon, you might need to use a second one when we were leaving the hospital. Among the other prescriptions that the doctor wrote for me. I said, Could you write me a prescription for glucagon because I use the only one I had. And clearly, my son didn't get a stomach bug. It was food poisoning. So food poisoning could happen again. And I want protection from that. And she looked at me with these beautiful, innocent eyes and said, Bonnie, we haven't had glucagon in this country in over 10 years. Wow. And so just don't imagine that it's going to be available for you. So travel with to glucagon when you travel. The other thing was, when we were in the hospital, the only ketone tests they were doing were blood ketone tests, they weren't doing any urine ketone test. So I had to wait until they would come back. You know, they weren't doing blood tests as frequently as we would expect to be doing our ketone tests. So again, don't just travel with a bottle that has maybe 10 ketone strips in it. I had a nearly new bottle of 50 ketone strips, and I was worried that I was going to run out

 

Stacey Simms  28:29

going forward. I assume you're filming like to travel? I mean, this was obviously a big trip and a big treat. Did you hesitate about traveling again?

 

Bonnie O'Neil  28:37

I don't think I'll go to Costa Rica. I'm nothing against Costa Rica. It's just the memories are. They're profound. I do try to pay attention to where there is a hospital, which is an easy enough thing to figure out. We have continued to travel that is for sure. In my book, I talk about another episode that happened after that, where he his insulin pump broke, and we were in France, and he had to get a we had to locate him a pump in a foreign country. So that's another fun story. But no, we've continued to travel, but I think it's just being safe, bringing your supplies with you and an abundance of supplies, checking to know where the hospital is. And I think it's it's just about being comfortable. Making sure that you feel comfortable where you are. Well, you

 

Stacey Simms  29:32

mentioned your book. Let's talk about that. Sure. Yeah. Oh, congratulations. That's Thank you.

 

Unknown Speaker  29:39

Thank you very excited.

 

Stacey Simms  29:40

Yeah. So why'd you call it Chronic Hope? Tell me about where that title comes from?

 

Bonnie O'Neil  29:44

Okay. Well, you might want to edit this out. I'm not sure so I was I was thinking about how much you know, I loved my my son and the care I give for him. This As a chronic condition and the title chronic love came to my mind. And that actually had been my working title for a little while. And as I was working on my book proposal, I did a little research little Google search on chronic love, and it was a porn site. So I changed the title. And actually, once I came up with the subtitle, chronic hope, is exactly what I'm writing about. We all love our kids, we do in a way that we show our love to them, especially as full time caregivers, that just cannot be disputed. But there's some times when we as the parents just lose our way on the hope journey. Because it's, it's so long and so complicated and can be so unforgiving. And we can be unforgiving of ourselves. The message really is hope for us.

 

Stacey Simms  30:57

I may have to lead with the chronic love, I think that forget about editing that out. That's pretty funny. Oh, my goodness. But you've had this story and you for a long time. I'm curious what caused you to kind of write it now to release it now?

 

Bonnie O'Neil  31:14

Yeah, good question. Well, I love to write. That's the first starting point. I've been writing for a number of years and have been honing that craft. And as I was thinking about what the next topic was, that I wanted to write about, it just felt like it needed to be a story that I've been living, something that was really true. And that it wasn't just something I'm going through now, which so many of my blog posts words like, you know, it's that short, quick blog post is almost like an instant word. It's like what you're going through at that moment, and you write, but I felt like I needed to write something where I had come out the other side, and actually had some wisdom to share. And once I sort of landed at that place, it was well, this is what I know better than anything else. And living this story out first with my nuclear family. And then with my family with my children, I just have been steeped in that for so long. I speak for the jdrf education conferences, that type of nation summit, and that one of the earliest ones that I did, I was speaking on the psychosocial impact of T one D on the family. And it was the first time I had delivered the that talk and I was I was sharing about, you know, my nuclear family and then Austin's diagnosis and how that impacted me. And I was just really honest, and, and raw, and I talked about my anger, you know, the disease coming back into my family, and just the challenges with my husband, when the two of us were not on the same page and the fear, I carried my need for control, wanting to control the disease, and all of these things. And as I'm looking up at the group that I was speaking to, like, everybody's dabbing their eyes, and sometimes, like really crying and at the end, one man said to me, So when's your book coming out? And I chuckled and kind of tucked that away. And it later, I think informed me very well as to what I should write about next.

 

Stacey Simms  33:32

What is your I mean, you have more than one son, and I'm sure they are your children are all featured in the book in their own way. curious what Austin? Right Austin? Is your son with time? Yes. I'm curious what what Austin thinks of this?

 

Bonnie O'Neil  33:44

Well, Austin is a man of few words that he's not

 

Unknown Speaker  33:47

going to do. Much.

 

Bonnie O'Neil  33:51

I made sure that in the advanced copies that I have, that he was, he received the first one. And he very graciously accepted it and then said, Thank you. He has congratulated me a few times and said he was excited. I did ask him before I really started the writing, and was just sort of outlining things. I asked how he felt about it. And he said he was fine. And I did say to him, and it's the Absolute Truth. If there's anyone who looks ugly in the book, it's me. It's never hand because I am raw with how I processed my emotions. Because one of the things I feel like in that for us, parents have a child that lives with such a complicated disorder. 24 seven, we take so little time to attend to how we feel, you know, because it's how can I complain when my child has to go through so much. And so we don't really ever name what it is that we're feeling and give ourselves permission to feel what we're feeling. And so then we can't really attend to it and move along from some of those stuck places and I really feel that the You know, the emotional health of a family begins with that center of the mom and the dad. And we need to get our stuff together so that we can create a healthy family emotionally.

 

Stacey Simms  35:14

I agree it's so interesting because we, as you know, an initial diagnosis. And though those first few years, we as moms, I think so define ourselves by diabetes, it almost seems like we have it like and you come to a realization that Yeah, do not be do not have diabetes, we do not have our child's experience. But it doesn't make the experience of being a mom of a kid with a chronic condition, any less valid. It's just a different experience. And I think I'm hoping, kind of saying the same thing you are in that once you realize that it's a mom, that it's okay to take care of what you are going through, knowing that's different from what your kid is going through, you kind of name it and take care of it and acknowledge it and talk about how tough it is. And right now until you can do that. It's so difficult. Yeah,

 

Bonnie O'Neil  35:58

it's a kid. It is. And I'm so glad now that there's such increased talk about soul care, because that at least is putting it into the forefront of everyone's minds now. But I think parents of a child with a chronic illness just really need that permission to say, I too need this soul care. I am going through mourning. This wasn't what I was expecting. I was expecting my child to have the freest life imaginable. And they still do. But especially in those early years, it's a lot, we have to mourn the loss of this perfect health we had envisioned for our child, and we have to deal with the fact that Yeah, we are tired,

 

Unknown Speaker  36:42

a lot.

 

Bonnie O'Neil  36:43

And it's okay to say I'm really tired. And I think even under, like coming to terms with the fact that a lot of our friends just aren't going to get it. And there's a loneliness that we carry here as the caregivers of our children. And it's okay, and it's not it's once we begin to name it and look at it and explore it a little bit, and how it's affecting us. That's the beginning of healing and freedom.

 

Stacey Simms  37:09

And I meant to ask you earlier, and it's okay, if you don't want to talk about this at all, how is your sister doing?

 

Bonnie O'Neil  37:15

She has struggled in the last few years with some complications. She has had, I believe gastroparesis for, I think it's close to 10 years that I think, went largely undiagnosed, and then has been quite problematic in the last few years. She's begun going actually to my son's retinal specialist for some treatments for her eyes. And her second or third treatment, this most recent one, they found that the retinopathy had had gone away. So I'm very thankful for that. So she just maintains the most positive attitude through shouldering this disease through the longest time, but I can see that it you know, it has taken its toll.

 

Stacey Simms  38:06

And so in your family, you know, you have two people diagnosed at different times, but still almost, it's hard to describe how different it is. We talked about Lantus And then off air, you and I were talking about control IQ,

 

Unknown Speaker  38:19

right? No,

 

Stacey Simms  38:20

just a guess of reflection before we go of the technology and the advances of not only I assume your sister has is using different tools than she did when she was first diagnosed.

 

Bonnie O'Neil  38:30

She is for sure. And I think that has been a great asset to her. So yeah, she's using now the Omni pod and the Dexcom as well. I am so grateful for the time in which we live and for the medical advancements that Austin has been able to take advantage of. I know one of the my friends through jdrf. She said recently, I am so thankful for all of you parents who came before our family did who paved the way because my daughter her daughter was diagnosed at age two or three. I've never known what you have known. She's had the Dexcom as long almost as long as she's had diabetes. I don't know the sleepless nights that you know, I'm confident now like that each generation or micro generation is going to be able to say that to the ones who came before them that we're going to continue to advance and are the lives of our loved ones are going to continue to get better. And that also just gives me a lot of hope.

 

Stacey Simms  39:36

That's great. Well, thank you so much for joining me, Bonnie. I really appreciate your time. Best of luck with the book. I'm really excited for you. There's nothing like a book launch. And I hope we could talk again soon.

 

Bonnie O'Neil  39:47

Thank you so much. This has been such a joy to be with you. Thanks,

 

Unknown Speaker  39:50

JC

 

Announcer  39:56

you're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  40:01

Learn more about Bonnie and her book and her story at Diabetes connections.com. In the episode homepage, as always, I put lots of links and info there, you could read an episode transcript, if you prefer to. Some people just like to read rather than listen to that it's fine by me as long as you get the info. In conjunction with this episode, I have a contest on social media. This is on the Facebook page for Diabetes Connections, not in the group this week. This is just on the page. And you can win a copy of her book chronic hope.

I also want to point out and I know we had a commercial in there, but I think it's really important especially for newer families to know that there are now options when it comes to using emergency glucagon because since the 60s, we've had the red box or the orange box, which were basically the same thing as you heard Bonnie talked about there mixing it up, and the big needle and all that stuff. There are new options. gfo hypopyon, is one that I spoke about, they are a sponsor of the show, they are a you know premixed ready to go shelf stable glucagon. And it's very easy. It's all in the panel ready, nothing to mix and you don't see that huge needle, it's very different. It looks more like an epi pen or an insulin pen and simple to use. There's also baxi me, which is a nasal spray. And that is also very easy to use, I will link up more information about that.

I just think it is enormously important to know that these things exist, knock on wood, knock on my head, knock on anything I can find. We haven't ever had to use emergency gun with Benny in 14 years. But as Bonnie illustrated, you just never know. So it's so important to be prepared. I'm also really interested in the future of this stuff. Because I keep hearing more and more people say that we're gonna be using it not just for Super lows, right? I mean, like me, you were probably told if He's unconscious, you know, if you can't keep anything down, that's when you use it. But now there's a new school of thought about using these in much smaller doses for less severe lows. So I don't have a lot of information on that. So I'm not gonna talk too much more about that. But I think that is very interesting. And something to watch. And certainly glucagon in an insulin pump is something that, you know, companies are working on, most notably the iLet from beta bionics. So, as we say all the time, stay tuned.

Tell me something good, a big honor for a wonderful member of our community. And that's about Minecraft to just ahead. But first Diabetes Connections is brought to you by Dexcom. And you know, when Benny was very little, and in the bathtub or in the pool, anytime his hands would get wet. I always noticed his fingertips. You know exactly what I mean. Right? We poked him so much. They were just full of these little pinprick holes. It looks horrible. I mean, you can really see it when he got wet at age 16. I am not inspecting his hands. I rarely see his hands anymore, but his endocrinologist does. And we went for a checkup in early January, his fingertips are normal. It's incredible. We've been using Dexcom for seven years now. And with every iteration, we've done fewer and fewer finger sticks G6 eliminates finger sticks for calibration and diabetes treatment decisions that we used to do 10 finger sticks in the past. It makes me so glad that Dexcom has helped us come so far. It is an incredible tool. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions or more, go to Diabetes, Connections comm and click on the Dexcom logo.

 

Over the almost six years of this show, I have been so fortunate to have some guests that really made an impact on me, who I'm really lucky, I think to call friends now, but who I turned to again and again for information. I know I can rely on them. They'll give it to me straight and in a caring way. And one of those people is Dr. Stephen ponder. Many people know him because of his sugar surfing talks and books, but he's a practicing endocrinologist. He's right there in the thick of things in Texas when he can pray and hopefully post COVID runs a fabulous diabetes camp and has lived with type one himself for more than 50 years. He got a really great honor recently, and he says he was stunned to learn that he has been selected for a big honor at the University of Texas Medical branch in Galveston. This is where he went to medical school. And then he stayed there another nine years where he says he became a husband, father, pediatrician and pediatric endocrinologist and the award is the Asheville Smith Distinguished Alumni Award. He will receive that formally in June during the graduation ceremonies at Galveston and the to read his post about this was it was really inspiring he gave a lot of credit to others and he finished by saying never in my wildest dreams did I imagine an honor such as this so congratulations to Dr. Steven ponder for a great award well deserved that's just fantastic.

Another Tell me something good comes from Samantha Merwin who is the mom of Logan the elbow bump kid we've talked to them on the show before she is working to roll out a national program about Minecraft. This is a Minecraft t Wendy play project. She says she had a successful pilot and She's working to roll it out nationally, working out a lot of logistics apparently to roll it out for people outside of her home state. So more to come on that. And she's also been working on a project with the college diabetes network along with Cigna. This is a really cool program all about mentorship applications are going to open in February, I will link up the page that is already there for college diabetes network. Basically, it's a program for junior and senior undergraduate students, you got to be current junior or senior, and it pairs you with a Cigna employee who has a similar career interest. So if you want to learn more again, I'll put a link in the show notes. But this was really great. Samantha love the work that you're doing here definitely going to help a lot of people and keep us posted on both of these programs. My son used to love Minecraft he still plays it but man when he was like 12 or 13 that was all they played. It was pretty wild stuff. I don't know what he's moved on to now. Although that's a lie. He his friends are playing Uno. They were screaming and carrying on get the card game Uno. I asked him I was like why are you so loud? Kind of Be quiet. I figured there's like shooting people or doing something crazy. They're playing card games on the computer? I don't know, is there any sign that you're getting older than you don't understand the games your kids are playing. If you have a Tell me something good story, please send it Stacey at Diabetes connections.com or posted in the Facebook group.

 

Little bit of housekeeping before I let you go, starting next week, I'm going to be doing something different. I'm going to be releasing an additional episode every week. So we'll have the regular interview on Tuesday, the long episode with segments like Tell me something good and innovations and all sorts of stuff. The regular episodes on Tuesdays will continue that way. I'm adding an episode on Thursday. And these are going to be what I'm calling classic episodes. If you're a sharp eared listener, you will know that I dropped in a couple of these last year kind of as a test. They are interviews from several years ago, as I mentioned, we've been doing the podcast for almost six years now. This is Episode 347. So there's probably a couple that you have missed along the way. And what I'm going to do is put context to the interview, you know, kind of catch up with the person let you know what they're doing now, and then replay the interview from several years ago, we have really great stories from a lot of really terrific people that you may have missed. And this way, if you're newer, and you haven't heard it, it's super easy enough to scroll back. I mean, Apple podcasts only shows you 300 episodes Anyway, you don't have to go anywhere. It'll be delivered right to you. And you can catch up with some of the really cool people and stories that I spoke to back in 2015 and 2016. So that starts on Thursday, February 4. Right now I am scheduled to do it for about half the year. We'll see how it goes. And you'll have to let me know what you think. Because after all, the show is here for you. If you don't like it, don't wait half the year. Let me know right away. If you do like it, of course I would love to hear about that as well.

Next week, you'll be hearing from Lily I talked to the folks from Ypsomed a couple of weeks ago. Ypsomed and Lily are partnering to bring a new insulin pump to the United States. It's not a new insulin pump elsewhere in the world, but it could be here as early as 2022. We're going to talk about why Lilly decided to pivot and go in this direction. That is next week. And thank you to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Benny  48:29

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Jan 19, 2021

It's been a year since Tandem Diabetes Care released their Control IQ software, hybrid closed loop technology to help increase time in range. What have they learned about how people are using the system? Molly McElwee Malloy, Manager of Clinical Outcomes at Tandem Diabetes Care, is back on the show to answer your questions and to talk about what's next in the Tandem pipeline.

Tandem Diabetes Pipeline

What diabetes tech to expect in 2021

Our innovations segment: using your CGM to get more out of exercise and.. a new study for people with rare forms of diabetes..

CGM and exercise

RADIANT Study 

Fearless Diabetic Summit

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcription:

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, it's been a year since Tandem diabetes released their Control IQ software, hybrid closed loop technology to help increase time it range.1 since that day, as we do around here. We've all been asking for changes. Tandem says they're listening,

 

Molly McElwee Malloy   0:43

can it be more aggressive? Could it be less aggressive? Good, you know, do this or that I pick my targets. Could I put a timer on exercise? Could I do all that? We are looking at all of those things. I would say nothing's off the table right now.

 

Stacey Simms  0:56

Molly McElwee Malloy, manager of political outcomes at Tandem is back to talk about possible changes to controlling q to answer your questions, and to look ahead at other tech in the Tandem pipeline

In our innovations segment using your CGM to get more out of exercise, and a new study for people with rare forms of diabetes.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome back to another week of the show. I am so glad to have here. If you are just finding us if you are new to Diabetes Connections, welcome. We aim to educate and inspire about diabetes with a focus on people who use insulin, my son was diagnosed with type one right before he turned two back in 2006. My husband lives with type two diabetes, I don't have any type of diabetes, but I am the broadcaster in the family. And that is how you get the podcast.

It's funny to look back on this year. Because not only did none of us have any idea what 2020 would really be like, but more to my point here, as I'm taping this on January 15. And planning to release on the 19th. This was a time when many of us in the community were just refreshing the Tandem page over and over again. Because Control IQ had been approved. And many of us had already talked to our endocrinologists about it and tried to get the prescriptions. And if you remember that time, especially on social media and some of the Tandem groups, it was a bit bananas. But we have been using Control IQ for a year. Now Benny got his set up at the very end of January, as I recall.

And they are not a sponsor of the show. They do not pay me to say this. But it's been absolutely amazing for us, it has really made a big difference. And you know, I don't share numbers. I'm not all about the numbers and straight lines with him. But I do want him to be healthy. And I think we were doing great before but just back from the endo this time around about a week ago as you're listening now, his lowest A1C ever. And the time before that was his previous lowest A1C ever. And the best part is he's doing less work. And I am I swear I'm doing less nagging. If you ask him, he will tell you otherwise. But I promise you it's true. So I'm thrilled to talk about control IQ. I'm really excited that all of the pump companies are moving in this direction, it would be amazing for everyone to have access to this kind of technology. That is a discussion for another time. Probably

Another little bit of personal news, Benny got his driver's license. I know I can't believe it either. Here in North Carolina, you get your permit. If you want at 15, you can actually take drivers at 14 and a half. But you get your permit at 15. And you can get your license at 16 right now, because of COVID. They are not even doing road tests. I know isn't enough bananas. But what happens is you get your basically your junior driver's license, you can't drive at night, which is what he would have been issued anyway, if he passed a road test. And they cannot move on to the next level the after nines until they get a road test. In fact, I believe what he has expired in six months without a road test. So he'll have to take one. He's a decent driver, you know how superstitious I am. So I'm not going to say more than that. But I'm confident we've got a whole system with diabetes we have we've had these discussions, and he's just so excited about it. And I'm really thrilled for him that this step has taken but as a parent, and for those of you who have known him since he was two, how did this even happen?

Okay, we're gonna talk to Molly from Tandem in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen and almost everyone who takes insulin has experienced a low blood sugar you know, that can be scary, but a very low blood sugar. It can be really scary, and that's where Gvoke Hypopen comes in Gvoke is the first auto injector to treat very low blood sugar. Gvoke is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvokeglucagon.com slash risk.

 

My guest this week is the manager of clinical outcomes at Tandem diabetes care. And she lives with type one, Molly McElroy is I am grateful to say a frequent guest. And if you're a longtime listener, you know, her career and her life has been shaped by the technology that is now control IQ. That's not really an exaggeration. She was one of the first to test out an artificial pancreas system. And she changed her career path because of it.

And my first interview with Molly was in 2016, when type zero technology announced their partnership with Tandem, and I will link up the previous episodes, we've done a bunch with her all about this software, you can find those links, as always, in the episode, show notes, wherever you're listening, the app should have show notes. If it's difficult to find, just head over to Diabetes connections.com. And every episode now has a transcript and lots of links and notes to help you out. Please stay though, to the very end beyond the interview because there are a few questions Molly had to check on. She couldn't answer at the time. And they sent me that information. And I will give that to you later on in the show. Of course, as I said, there's a transcript so you can check it out that way as well.

Molly, thank you so much for coming back on to talk to me a year ago, you and I spoke about Control IQ it had basically just been approved. And you were kind enough to jump on that in late December. So thanks for coming back on.

 

Molly McElwee Malloy   6:26

Oh, you're welcome. I'm very excited to be back on this.

 

Stacey Simms  6:29

Yeah, well, lots of lots of questions, of course, from listeners and from me. But let's just start by taking a moment to kind of reflect what's the last year been like for you guys at Tandem?

 

Molly McElwee Malloy   6:39

You know, it's been really crazy great is the best way I could describe it. There's a lot of excitement for control IQ, and rightfully so. And there's a lot of the feedback via social media about people's experience. And it's been really, overwhelmingly positive. It's also been kind of emotional, because this has been a rough time for everybody, right? Like last eight months or so that we've been in. I've been calling it seclusion. But it's, you know, everybody working from home. And that's been a really high stress situation, particularly for people with chronic disease, and myself included. So I've really been grateful that control like has been out and approved. And a useful tool during this time. Because just you know, stress influences glucose. And so it's been a big, huge help for a lot of people, particularly during this time. So it's been crazy great. And it's been busy. But sure, I would love to experience control, like you and all the interaction with healthcare providers in person. But it's been great just talking to people on the phone or on video or teams. And it's been really good that we've been really busy. Yeah, sure. All right.

 

Stacey Simms  7:43

So what I'd like to do is take a look back, get some information from you about control IQ, and then kind of take a look forward because we know the product and the product line is evolving. So let's just start by asking you, what have you learned about control? IQ obviously had all the study information. But looking back at 2020? How are people using it? How is it working out? What is the data telling you,

 

Molly McElwee Malloy   8:07

you know that this is the funniest thing, and this is not something that you can plan or you could guess but our real world data is better than our clinical trial data. And I'll say that again, because it's just, it feels a little crazy to say that out loud, because that's usually not the case, right? clinical trials are very well managed. And you know, there's protocols and everybody's sticking to stuff. But it turns out when you put this put control, like you in the real world where people are experiencing significant hyperglycemia, or even hypoglycemia, it does even better. So I mean, the clinical trial population was pretty well controlled, right? And we were still able to improve on that. But when you put it into the real world where people are doing, you know, they're real people, they're doing all kinds of real things, and we're able to get even better outcomes. It's surprising. It's awesome. It's a really cool experience, and definitely unexpected.

 

Stacey Simms  8:59

Yeah. So let's dig into that. Can you tell us in terms of I guess you're measuring things like time and range? Can you give us a little bit more information about what you mean by they did better?

 

Molly McElwee Malloy   9:09

So for one, it's it's time and proven time and range, right. So in our pivotal trial, we had about 11% over baseline improvement on time and range from a very good well control group, which is awesome. But in real world, it seems to be closer to 13%. Sometimes a little bit better. We've got some results from D Q&A which is a third party vendor that does research and they're affiliated with Diatribe. And they did some survey results about time and range by insulin pump therapy and it's been really cool to have like a 33% getting 81 to 90% time and range 31% getting 71 to 80% of 11% getting 91 to 100% which is crazy. So you know all of that And it just is amazing because it really does. It whips up on the competition. But it also just shows that, you know, this works even better in the real world.

 

Stacey Simms  10:08

Any idea why? I mean, are people using sleep mode? Are people figuring out different ways to use it better? I'm just curious what you think might be happening?

 

Molly McElwee Malloy   10:19

Yeah, I don't think it's the using sleep, you know, 24, seven or something. I think using a sleep schedule has been very successful. But I think the reason for this is that largely, and not everybody was correcting aggressively, right. So while there are that subset on Facebook, or social media that are trying to get that, you know, super, super tight range, there are plenty of people who, between meals, we're not correcting, and now they're receiving those corrections. And there's some evidence that we were able to publish. And I think we showed an ADA, but that persons with type two diabetes are benefiting from this. And that's because they're getting the corrections between meals, which we don't typically ask people with type two diabetes to do that. So getting that tighter control is really, really helpful. And again, not everybody does that.

 

Stacey Simms  11:11

Yeah, I have one of those people in my house, who not everybody does that. I mean, we I tease Benny all the time, and he knows that I I talk about him on the show like this, he will happily, let me say that Control IQ has helped him significantly because he often boluses after he eats or forgets to bolus or didn't correct between lunch and let's say, bedtime, even if he gave himself insulin for dinner. And it really has made that burden lighter. And it's certainly not perfect. I have friends whose kids are much more engaged with their diabetes, I guess is a way to say it where they, they will you know, they'll bolus every two to three hours, or they're looking at their watch every 20 minutes. But he's never been like this. And it's really improved his quality of life. Because I'm not, I'm not willing to make him do that.

 

Molly McElwee Malloy   11:57

Well, and if you think about the long term, decrease the complications because of this going on in the background is sort of automating this. I mean, that's a huge improvement and quality of life. One of the things I'm really excited about is to watch this going forward to see how we can measure decrease long term complications from this, you know, the not just like seeming variability, but with those micro macrovascular complications. But this is long term complications from diabetes from having high blood sugars. And, you know, that's just something that we've never been able to really control for before. So this is going to be very cool to watch and see how it plays out.

 

Stacey Simms  12:36

No doubt. All right. We've gotten a little bit inside baseball, but I think most people listen to the podcast will understand some of the shorthand, I'll try to explain as much as I can. But if there are things that we mentioned, that you are not understanding, I'm going to link up lots of stuff in the show notes. But one of those things is sleep mode. And I just want to take a second to talk about that. Because you and I, when we talked last year, you said that there were some people using sleep mode, which will adjust basal but will not give you boluses, they were using a 24 seven in the studies, you called them sleeping beauties. And there have been many, many people in the real world settings who use that we do not we actually don't laugh at me, we stopped using sleep mode for sleep. Because as great as it was working for Benny with what you called a seclusion, we found that he was eating at interesting hours, you know, 1am 3am I mean, he went full nocturnal for about a month there way back when I want to say like June or July. And so we turned off sleep mode because we needed that bolus power at weird times. So it's been really funny how you can kind of use the system in a way that works for you. But getting back to my question, what have you learned about sleep mode? Is there anything you can share with us?

 

We'll get her answer to that question and what she can share in just a moment. But first Diabetes Connections is brought to you by Dario health and we first noticed Dario a couple of years ago at a conference. And then he thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket, unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it and personalized reports. Based on your activity. Find out more, go to my daurio.com forward slash Diabetes Connections. Now back to Molly answer my question - we were talking about what Tandem has learned about the use of sleep mode?

 

Molly McElwee Malloy   14:44

Yeah, yeah, there's lots like I've learned I just want to share quickly that I've seen in looking at lots of reports with lots of health care providers that during what I've been calling seclusion or hibernation this this COVID time that people schedules are very, very different. They're eating at different times. And that sleep, as originally intended right is not what it looks like during this time. So there's a lot of people who have benefited from not using sleep when they're eating right through the night, or snacking, or staying up extra late or, like really altered schedules, right. So we've seen that some people have turned sleep off, and that's been successful for them.

So sleep, what sleep is doing is it's based off of fasting metabolism. And it's using this 112 to 120 sort of target. And it's really, it's a really tight range. But it's doing this through modulating basal. And the reason it's only modulating basal and not giving corrections is because someone is sleeping, and they're not, we're not anticipating postprandial spikes, and we're not anticipating exercise or activity. And so it's really, really meant for when you are kind of static, and you are sleeping. Now, that said, Not everybody's sleeping normally, particularly during COVID. And so it doesn't always work that way. And then some people want to have sleep 24 seven, so that the basal is modulating, but that they're responsible for the corrections. And if you're willing to glance and see if you need a correction every two hours, that can work really well. But if you want to alleviate that burden, right, then, then sleep maybe isn't the best thing for you to use 24 seven, so it really depends on the user and the user's interaction.

But the other thing I wanted to mention about sleep for users is that one of the things that we've noticed, and how people are using sleep is that if their schedule have has changed drastically with COVID, that they may need to reevaluate that sleep pattern as to what time it is. So for instance, if someone previously wasn't snacking at 10pm, and now they are starting sleep a little later may make sense because they may need an additional correction before going to that, you know, that's one circumstance I've seen a lot of. And another one is, there are some patients who can't go to bed with a positive IOB. And what I mean by that is, you know, going to bed with any insulin on board that is not related to carbohydrates, right, so for correction, and for them starting sleep sooner, and you know, obviously not eating right before bed, makes sense, because they're not getting any corrections before bed. So there's sort of really two very different types of insulin sensitivities, right, the person who's eating and then needs the additional correction, who may want to start sleep later. And then the person who isn't eating after dinner, and really doesn't want any additional corrections before they go to bed, starting it sooner. So I've also seen that very interestingly playing out in the public realm, and it's it's interesting to see how people are using it to make it work for them.

 

Stacey Simms  17:44

Yeah. What about exercise mode? Have you learned anything about how people use that we don't often use exercise mode.

 

Molly McElwee Malloy   17:50

Yeah, exercise is interesting, because it's sort of like a temporary basal rate, if you will, which you set indefinitely, right? until you start it and you stop it. And we hope in future versions, we'll be able to put a timer on this. But for right now, you start and stop it. And so you could be in sleep for 24 seven, if you wish, I have seen that be useful when people want to keep an a higher target, and want to be a bit more aggressive and preventing hypoglycemia, right. So that's an interesting thing that has and can be used selectively, whether it's for exercise, or just because you would like to keep up, you know, you need to be a little bit more conservative on the hypo end. And you really do want to have a higher target, you know, and COVID times looking at how particularly the aging population is trying to stay at home rather than go into care, using something that's going to keep them a little safer on the lower end and elevate that glucose level a bit has been useful, and just allowing people to remain, you know, in a safer range with preventing hypoglycemia.

 

Stacey Simms  18:51

I'm curious to see if there are any best practices, or any advice for starting the system. A lot of people who switched from Basal IQ or other pumps or no automated system, you know, just a regular Tandem x2, and I'll put myself in this camp. We were one of the first people on this in late January of 2020. We started on Control IQ before my endocrinologist or shouldn't say that way. We started on Control IQ before Benny's endo was trained. So I was in touch with him, but he was like, tell me what you find out basically, like, show me Show me Benny settings like we're gonna adjust as much as we can. But what are people saying? What are what are the you know, what are the experts saying? Trust me, my endo doesn't take advice from Facebook. But you know, it was one of those situations where we're learning together. And luckily, he trusts us to do that. But then he had, you know, we put his regular settings in, and we had massive overnight lows. And we had to adjust because of that five hour increment. We had to adjust. Basically everything works like a dream now, but it was a different transition than I had anticipated. I'm curious if you learned anything from that and what your advice might be now?

 

Molly McElwee Malloy   19:56

Yeah, one of the things we noticed, particularly people going from Basal IQ to To Control IQ as in basal IQ, they'd sort of artificially inflated their basal rates to sort of hug that line at 80, right or, because because it can always turn off, right? It's always preventing hypoglycemia, so why not have that basal rate a bit more. And with control IQ, it really takes that information and says, okay, that's where you are at baseline. And if that's really overly aggressive for where you are at baseline, then you're going to have hypoglycemia. So getting optimized settings is super, super important. And we do still see that people going Basal IQ to control IQ, that they've had really aggressive basal rates, and you need to back off of that, or even really aggressive meal. boluses, right. So sometimes getting that reevaluated with your healthcare provider, or diabetes educator, can be really, really helpful. But also coming from other AI D systems where you may not have as much information about, you know, what's going on with your basal rates or anything like that. But really just going when in doubt, wipe it out, you know, go back to basics with your settings, and with your provider and making sure those are dialed in. Because control IQ  is being a metabolic algorithm, it really does behave when we really did design it around sort of insulin titration as we know it. So it's not any, any crazy math, it's not an occult science, it's, you know, it's what your endocrinologist would use now, for titrating insulin and going back to those basics is is really necessary to get a good solid start.

 

Stacey Simms  21:23

So would you recommend maybe basal testing or just talking to your provider about what they think is best for your settings,

 

Molly McElwee Malloy   21:29

talk to your provider about what's best for your settings. I mean, I can't give any medical advice on on how to do that exactly. But there, there are known ways to do this, whether it's you getting your basal rate, or your carb ratio, and a correction factor all dialed in. Do that with your provider. I I personally hate basal testing, I will tell you that I don't like basal testing. The reason I don't like it is because when people are basal testing, they are altering their behavior from normal. And it is not a true test, right? They're trying to avoid hypoglycemia. They're not doing their normal schedule. Because if you get hypo right, you have to treat it's trashed, you have to do it again. And so beta testing is, in my personal opinion, a nightmare, and not a true representation of what the patient is actually needing during that time. So I would I would prefer to do is see how controller hue is changing baseline and then see what that looks like against what's programmed and kind of, you know, look at the difference between the two to get the feedback. So really think basal testing is, you know, in theory, it's a good thing, right? But nobody basal testing is doing exactly what they were doing before that because they're not eating, right, they're trying to be careful about hypoglycemia. Sometimes you're just staying home all day to try to test this out, because you have to do so many finger sticks or what have you. So I don't think it's a really good representation of what's actually going on, I think, you know, looking at your total daily dose of insulin and talking to your healthcare provider, you can get that dialed in much better, with much less frustration. What I did with Benny and

 

Stacey Simms  22:59

I agree with him on the basal testing, we haven't done it in years and years and years for many of those reasons. But what we did that work nicely is we made changes very slowly. And it can be very frustrating. But it really works well. For us. Again, this is not medical advice. This is me personally what we did. And it really helped, we made one change basically, like he went low at 2am. So I changed the basal rate and we waited like three days, then and even if we went low, we treated but we didn't change the basal rate, then we worked on the insulin sensitivity factor, then like it took us two to three weeks before we thought we might have it and then we adjusted again about a month later. And if you if you can be patient, which is so hard to do, you know, people especially especially, and I'll throw myself under the bus too, especially as parents, we get nervous if anything's out of whack, right? We want everything to be perfect. What happened to my straight lines, and it's really hard to dial into settings, unless you're willing to let some of that perfection slide for a few days or weeks. But I'm telling you do it slowly, it'll come out much better in the long run.

 

Molly McElwee Malloy   24:03

Right. And if you think about an experiment, like for instance, the one that often comes up in our household is meant to my husband likes to follow recipes. And I hate following recipes. Although I know it's absolutely necessary, right? Because if you don't get the flour and the sugar and everything else, right, it just tastes like dirt. So they when you're baking, because I have done that. But it's very important to follow those recipes because if you alter you know one thing versus another thing, you're gonna get a totally different result. So altering one thing at a time is very important in a scientific kind of experiment, which sometimes dialing and pump settings is absolutely like that. And you need to follow that recipe. You can't willy nilly. It's not an art, right. It's very much a science. There's no there's no artfulness in this.

 

Stacey Simms  24:51

So looking ahead, and I'm not sure how much you can tell us but I'd love to start by kind of asking you about changes planned to control like you bet He has the first question here. He wants to know when the auto correction, right that auto, I call it the auto bolus, but the auto correction, when that will be stronger, because right now it's 60%. automatically.

 

Molly McElwee Malloy   25:12

Yeah, 60% because we're also titrating. Basal. Right. So the combination usually gets you closer to 100%. We are currently working on what that looks like, and how we could do that safely. I don't know how quickly that comes to fruition. But I can tell you that we are working on trying to understand how you would increase aggressivity without increasing hypoglycemia

 

Stacey Simms  25:37

you need a teenager setting, I can tell you that

 

Molly McElwee Malloy   25:40

we need a teenager aggressivity setting that's, that's for darn sure. Yes, Yes, we do. Well, maybe

 

Molly McElwee Malloy   25:45

I should start

 

Stacey Simms  25:46

by really asking you what what are you looking at in terms of improving or changing control iQ?

 

Molly McElwee Malloy   25:52

So we've we've really listened towards to feed back, right. So one of the things we do at Tandem, which we do really, really well, is we do these surveys all the time, where I'm constantly asking you, and you probably get these, what do you think of this? What do you think of that? What do you want from this, what you want for that, and then we look at the glycemic data, and we do some comparisons, because you can't just take what somebody wants as the absolute that would be best for everybody without looking at glycemic data. So we're kind of looking at both of those things, to see how we could refine Control IQ for something in the future, that works better and something that people don't even more excited about. So we're looking at people's sort of concerns? Or how aggressive can it be? Can it be more aggressive? Could it be less aggressive? gonna, you know, do this or that, but I picked my targets? Could I put a timer on exercise? Could I do all that? We are looking at all of those things? I would say nothing's off the table right now. I don't have any promises as to what comes first. As far as the improvements go, I think, you know, the next thing that we've been working on sort of is that bolusing from your phone, and being able to bolus from the app? Because that's been a big request.

 

Stacey Simms  26:57

Oh, but I'm asking about that. Don't worry.

 

Molly McElwee Malloy   27:00

Okay, yeah, because the thing, the cool thing about working as you know, we're a software, pump company, right, software based insulin pump company, which is cool, because you can make changes to software a lot easier than you can make changes to hardware. And so since we're not reliant upon the hardware to change, to make major changes, we could kind of do this in an iterative fashion, you know, one thing and then another thing, and then you know, and build and build and build a better product as we go along. And like you said, before, doing it slowly, carefully, looking to making sure that the changes are appropriate and working for everybody. So we're gonna follow that sort of scientific process, but we're looking at a bunch of different things that we might be able to change or, or make better based on feedback that we've gotten from our users.

 

Stacey Simms  27:49

One of the things that the other pump companies are coming out with, or if they come out in 2021, is a lower and different range, target range, or target number, you know, Omni pod and Medtronic have said that it'll be lower than, you know, 115, or 110. It'll be down to 100. It might even be adjustable. Can you speak to what Tandem is looking on that?

 

Molly McElwee Malloy   28:12

I think we're looking at a lot of different things I do. And full disclosure, as everybody knows, I come out of the University of Virginia research school center for diabetes technology, and working with Dr. Boris kabocha, and working with Dr. Mark proton, and Sue brown and Stacy Anderson, and really getting familiar with what is safe, and where people can kind of push the limit and where you can't, I think that 112 point five that we've chosen as being a really safe glucose has been really safe for the majority of the population. And since we're designing for the majority of the population, it's been very successful. So I know there are people who want to choose differently and want tighter targets. Now, when you choose tighter targets, whether it's 100, you know, some people will want 80, things like that, you're going to have to trade off some hyperglycemia. And as a product that gets approved for vast majority of patients, when you increase hypoglycemia, you are inviting adverse events, right? You're inviting possible adverse outcomes. And so you have to be very, very careful and almost ginger with that, and what that's going to mean for your patients and for the whole population. So I approach that cautiously. And I think at Tandem, we're approaching that cautiously as to how do you do that without increasing hyperglycemia? I think other people choosing those targets, you're gonna see the trade off with increased hyperglycemia. At least that's what we've seen so far. And in clinical trials,

 

Stacey Simms  29:56

it's interesting because people listen to this podcast generally. We are found through the research that I've done, you know, are extremely well educated, you know, very much take control of their diabetes in terms of even willing to do DIY stuff, right? It's a different population.

So as you're listening and you're thinking, well, I want to ride at You know, all day long Give me that flexibility. and wondering, you know, how do we balance that, as you're saying, with the 99% of people with diabetes, type one and type two, who may use this pump, who don't have access to the education or the time to look into it, or you know, many, many, many factors that increased that chance of hypoglycemia, as you said, but the other hand, it's a selling point. And other pump companies are already saying, we were going to be better, right? Or we're going to be more flexible. And I don't know if that's even a question for you, Molly in the position you're in. But it is something that I guess you really have to take into consideration.

 

Molly McElwee Malloy   30:38

You do. And I can speak more philosophically about this than I can. Anything else. But you know, particularly as a diabetes educator, and as someone with diabetes, hugging that line at 80, or 82, or whatever someone wants to do, you do have increased hypoglycemia. So the most relevant experience I have to pull from is pregnancy, right? during pregnancy, we asked people to stay, you know, very controlled, which you know, is a little bit like magical thinking, because it's very, very difficult. When you get all these hormones raging and everything going on and you're sick this minute, you're hungry, the next and all this stuff is going on, I spent a miserable amount of time and hypoglycemia, this was before any automated insulin system, right? So my daughter just turned four, so we can do the math. And she's my youngest. So I know nothing was on the market at that time, that would have helped me. But that was preventing that, but in letting me ride that really close line, have you know, let's hang out at 72 all day, at personally thought that was a miserable experience, whether it's the neural glycopyrronium, right, so your the lack of glucose to the brain where you're like, I can't remember what's going on or what I need to think about next, or you're constantly tweeting hyperglycemia. Like, it's not a trade off, I would take lightly. It's a risky trade off.

And I would say for for people who are comfortable being in that space, that's fine. And that's a very small amount of people, right. And if you can hug 82 all day, with, you know, whether it's doing some sort of low carb diet and intense exercise or what what have you, that's awesome, you're also not the majority of the population, right? So while I can appreciate that people want that, and they want to be able to set a much lower target, you know, people with euglycemia, right, without diabetes, don't have that either. People with without diabetes do have, you know, 30 40 point range, sometimes with meals and things like that happening. So it's not, it's perfection that I don't know, is a realistic ask for someone with diabetes. Now, people who can do this and do this all the time, I guarantee you, they're spending a tremendous amount of time and thought on it. Again, if you want to do that, and you can do that. And that works for your sanity, then please, by all means, but for a lot of people, you know, like, we have other things that we are going to be focusing on, and it's not going to be diabetes 24. Seven, and the goal of an automated system is to relieve some of that burden. So, you know, it kind of depends on like, Are you okay, with the trade off being low? Are you okay, with more management with being more involved? A lot of that's just going to be decisions, personal decisions someone's going to have to make, but I wouldn't say that the lower target is necessarily advantageous for a large population.

 

Stacey Simms  33:24

Okay, as you listen, I know, you were screaming at me to go back to bolus by phone. Don't worry. I didn't let it slip by. Let's talk about that. Because the app came out spring-ish of last year for general users. And it's great to look at people love the information. Talk to me about if you can tell us a timeline or any information about bolus by phone?

 

Molly McElwee Malloy   33:46

Yeah, so one of the cool things about my job is that I get to work with the Human Factors department and we have really good human factors department at Tandem. And we

 

Stacey Simms  33:56

stop you there human factors, because that always confused me. That means how people actually interact like how stuff feels and looks and how you actually use it,

 

Molly McElwee Malloy   34:03

and how you understand it. And how logical is something to you? How intuitive is something to you, you know, something as simple as changing where and the menu structure you would put something we test to see if trained, can people find this? Is this intuitive? Does this make sense to you? If we use a new term, right, we test it to make sure that it's understandable the thing might, you know, this is a very much outside of the realm of insulin pump therapy. My favorite illustration of human factors is if you you know any hotel you've ever visited, you pick up the hairdryer that says do not use in the shower, right? Like someone did that there was someone I'm sorry, yes, somebody did that. Right. There's, you know, crazy warnings if you'd like pick up a pillow, it's like you know, do not use while smoking or do not, you know, things like that, but it did happen. So that warning has to occur. So if we change something with insulin pump therapy, or we Add a feature like bolusing. From iPhone, we have to test it very thoroughly to make sure it's safe, effective, understandable and intuitive, because not everybody is going to read the instructions. So we have just completed the mobile bolus testing. And we've done extensive work, testing it in a number of different scenarios, people with type one, type two pediatrics, where they are in charge pediatrics, where the parents in charge, you know, there's a wide range of people who are using the system. And we need to test in all of those different user groups and get feedback. And it went really, really well, which was excellent, which means that it can then get submitted to the FDA. So I suspect that that will be happening somewhat early in 2021, first half of 2021. But I don't have insight or line of sight as to when that is promised. Because the FDA is so so concerned with COVID right now as they rightfully should be, and approving vaccines and things like that. So there's a little bit of a backlog there. And I don't know how that's gonna affect our timeline. But we've been working really hard to get that out. We know people want it, we know people will need it. And it will be a really useful feature. But it's been tested really well.

 

Stacey Simms  36:08

So and again, I'm, I get a little fuzzy sometimes on the details here. What kind of submission is this? I have learned in the last few years that there are different ways of submitting to the FDA some take longer to approve. I mean, we never know how long it'll take to approve Having said that, but there are some things that are like building on previous submissions is bolused, by phone something so new, that they have to look at it in a new way, or is it building on something you've already asked them about?

 

Molly McElwee Malloy   36:32

It's a good question. And I'm not part of the regulatory team that is involved in that strategy. I believe that we are building on our previous submission, since this is an on an ace pump, an alternate controller enabled pump and the and the the way that the pump is built. And the way that that is structured for regulatory purposes, is that you build upon last submissions, but I can't speak with authority on that at this time.

 

Stacey Simms  37:12

The other thing that we are very interested in as a household and a community is that what has been called the T-sport, can you talk about where that is in the process, and that's the tiny tube pump, I guess I would call it, I'll link a picture, if you're not familiar with it, we will link up some more information. But it's not quite a patch pump, there is still a little tube on it. But it's much smaller than the x two and it's made to be worn kind of flush or flatter to the body.

 

Molly McElwee Malloy   37:28

Right. And the idea behind this is that you could have a variable to be linked right very, very short tube on your body to longer where you just put it in your pocket. So depending upon the patient needs, the reason that it is still has an infusion set is that we know right from feedback that if you have an occlusion with a patch pump, you take that patch pump off and you lose that insulin right, and you lose that whole thing. If you can replace a site, and not all of the insulin that's in you know in contained to their end, then that is an easier fix for somebody, it's also less expensive. So that's something that we've been very keen to keep. And addition, the the idea that you might need a different angle set. So not everybody can use the same sets as successfully as others. This will allow us for some variety there as well. And so we're pleased about that.

 

Stacey Simms  38:22

And I can just jump in and kind of translate because I know you're you have to be careful about what you can say. But as you're listening, if you're wondering what she's talking about Omnipod goes in one way, there's not an angled set, there's not a steel set, there's not a different set, there are a few more options if you're using a tube pump, if the inset on the pod pump doesn't work for you. And so there's also as you mentioned, the insulin that's in the tubing, you can do I don't know if this is Tandem approved, so maybe don't listen, Molly, but you can do separate site and tubing cartridge changes when you use a tube pump, which is what we have done for years. So when he said of insulin, the pump, we change the cartridge, when it's time to change the inset, we change the inset we don't do those together. So, you know, advantages and disadvantages for each pump. I know Omnipod people love the things that are great about their pump, but those are the differences that you're talking about. Just in case you can't get into the nitty gritty.

 

Molly McElwee Malloy   39:11

Right, absolutely. And you know, we're big fans of choice at Tandem. So if something works for you, great, excellent. And so one of the reasons that we're so big on choices, because not everything works for every person. So this book allows somebody some choice within that. That option.

 

Stacey Simms  39:27

So where are you in the in the test? I know you can, you can barely give us full details. But where are we in terms of T-sport? Is it? Is it in testing? Is it is it coming out soon?

 

Molly McElwee Malloy   39:37

I can't speak to the exact timeline. And part of that is because the FDA is bogged in and down in COVID right now, but we are working on it. I know we're working from a human factor perspective, we're working on what the difference is going to mean for the patient and training for something like this or from the healthcare provider and training and something like this. And that's the aspect that I'm involved in, is you know, how do you train on something that's a little But different like this, and how do you change the training to adapt to that, but everything is in development. The thing about Control IQ and and even basal IQ is right there already tested. So those can be implemented in a new form factor without any problems. So that's something that we don't have to worry about. So it's more of just form and function and things like that.

 

Stacey Simms  40:19

Here's a dumb question for you. I have heard that T-sport is the name that you all are kind of using internally, and it may not have that name when it's released. Any update on the name? Is there an update on the name? Oh,

 

Molly McElwee Malloy   40:31

I am not the person that would be able to tell you that. Oh, okay. But I appreciate the question.

 

Stacey Simms  40:38

I think you should have a contest and you could name it, you know, pumpy mc pump face or something. But yeah,

 

Molly McElwee Malloy   40:43

exactly. Yeah. Yeah,

 

Molly McElwee Malloy   40:45

we're shorting

 

Stacey Simms  40:46

Yeah, surely that's perfect. I was laughing when we talked about that this summer, because it's interesting. And it's such a wonderfully privileged place that I'm in I feel like we're we find out this information. So early in the process, that the branding isn't really even set. So it's when I heard that I thought, Wow, what a cool place to be in some very interesting stuff. Right. I have a few questions from listeners for you. I know you have some more information. We're getting kind of long here. But let me ask you, here's a quick Control IQ question. And this is more advice. I don't know if you can answer this. So this person says, sometimes I like to set a higher basal in advance of when I work out because adrenaline makes my blood sugar spike, can you change that. So we can manually adjust basal rates without having to turn off control IQ, I know my body better than the software having to manually adjust with boluses after and having to guess, since I can't do them based on blood sugar due to iob issues is tricky. And I will jump in and say Molly, Benny, and I do this too, we do some guessing with the manual boluses. So I'd love to hear what you think about this.

 

Molly McElwee Malloy   41:49

Sure. So there's a couple different directions we can go as one is you can turn Control IQ off and on and do temp basal rates. And there's no penalty, right for doing that. There's no learning time or restart up or, or anything like that, that impacts Control IQ if you turn it off and on for those periods of time. So that is absolutely an option. It's just it's super easy to do. Another thing that we've seen people do successfully is set up a secondary profile that is a bit more conservative or a bit more aggressive, depending upon the patient needs. And then switching into that profile for that period of time. And leaving Control IQ on so there's a lot of different ways you could do this, you could even do a secondary profile, and then put it into exercise, right? Like you could do conservative plus that temp basal, right, or you could do aggressive plus that 10 basal rate. So all of that is it's entirely possible. But knowing that you can turn it off and do the basal rate as you please and then resume it confidently, you know, that's still an option for you. I do know that people do want a bit more control over that. And so and, you know, allowing for some sort of ability to have a temporary basal rate is on the list of things that we would like to do. Great.

 

Stacey Simms  43:03

Another question was I am still using basal IQ. And this person is really curious about what percent of Tandem users are using control IQ. And and you've kind of touched on this. But do you have any statistics about user satisfaction rates for control? iQ?

 

Molly McElwee Malloy   43:18

Yeah, so D q&a, again, affiliated with diatribe, third parties who, you know, has done some user satisfaction surveys, and I will get you the exact number. But this user satisfaction with Control IQ is very high, very, very high. And I would say the majority of people have changed over to control like you. But there are still patients on base like you and I can't speak to the exact percentage, but there are reasons why somebody may want to choose based like you to just have that suspension rather than also, uh, you know, having the, the auto correction or something like that. So there's cases for both, and that's why they're both still being offered. But I can't speak to the exact number of people who have not switched over, but most people are switching over to control like you.

 

Stacey Simms  44:02

Are there any plans to make it more flexible in terms of switching back and forth? Because once you go from basal IQ we did this once you put the software in your pump and switch to Control IQ you can't go back to basal IQ. Are there any plans to change that?

 

Molly McElwee Malloy   44:16

Not at this time. The reason being is that you wouldn't need a script, write a prescription to do that. And when you upload your property went to your provider. If you went between one thing and another and another all the time, we would really have to differentiate those reports and make sure that the healthcare provider was familiar with why each was different because they would impact how you would titrate insulin so it adds a lot of complexity on the therapy end. And so we have not made a move to to make that something that you could toggle between. Got it.

 

Stacey Simms  44:51

And another question came in which I thought was really interesting about accessibility for people who are blind and I know in the past, there was a meter that I think talked about There was more audio is Tandem looking at more accessibility for people who don't have any vision or low vision.

 

Molly McElwee Malloy   45:07

Yeah, yeah. So Tandem is making technology user friendly for those with different abilities. And we're absolutely have this on our radar, persons with low vision or no vision, right, using a touchscreen could be difficult. And we're exploring ways to leverage apps and existing consumer technology that might be able to solve those unmet needs. It's definitely definitely something that we are looking at and can appreciate that that's something that we need to do.

 

Stacey Simms  45:32

Very cool. Another question came in, and this is based on an older press release. So I'm not sure if you can speak to it. But apparently JDRF in Tandem years ago, like eight years ago, put out a news release about a dual hormone, insulin pump. What we're seeing if you're familiar with the iLet beta bionics is because the only one at least in the US where they're trying to develop a pump with insulin and glucagon with more stable glucagon now on the market, any chance that Tandem is working on a dual chambered pump.

 

Molly McElwee Malloy   46:02

So the big message here is that that eight years ago, I think, for the press releases when Tandem was being used with two separate pumps in the iLet studies, right, right, they ran the Tandem pumps, and one was full of glucagon and one was full of insulin. And they were putting two pumps on one person,

 

Stacey Simms  46:13

I remember that picture. Wow.

 

Molly McElwee Malloy   46:21

So that's where that came from. So but our our micro delivery technology is really well suited for to hormone therapy, we currently are only approved for you 100, right? insulin and only indicated for insulin per FDA. But you know, it's a fundamental challenge for people developing dual chamber devices. And there's not an approved hormone available for use in pumps at this time. So it all be very investigational. But we do have, you know, this microdelivery technology, which is well suited for doing something like dual hormone, but I think there's a lot of things that need to get addressed before even that becomes something that we can put in a trial.

 

Stacey Simms  47:02

And then it's something that I started talking about this summer, I've mentioned this interview with I did with Steph Habif from Tandem. And I will link that up. It was kind of we call it the first look under the hood for Control IQ that we did this summer. And she's the Senior Director of Behavioral Sciences. But we brought up some of the questions about who gets into clinical trials and who actually tests these things out and the information that you get in terms of diversity. And so this question here, I'll read the whole question from a listener. I've heard some rumblings that most of the people who tested Control IQ were white, I would love to know that Tandem has plans to diversify this more. This is a huge issue in general for trials of any kind, and stuff this summer started to address that in terms of Tandem knows it. They're trying to be more diverse. Can you follow up on that? And let us know what's going on?

 

Molly McElwee Malloy   47:50

Yeah, and your listener question is totally right on, right. The FDA is on this as well. They recently told Moderna, you know, you have to go back with your COVID vaccine and get get more people, right, you have to get people of diverse backgrounds and and ethnicity. And so that's true in clinical trials overall, need to be all more inclusive. And it's true that most automated insulin delivery trials today have been largely white, and that includes our adult pivotal trial. One of the things we're seeing changing from both an FDA perspective, as well as research and industry is that there's active pivoting to change the approach. And there's more guidance on changing the approach. The FDA has issued guidance on diversity and inclusion in clinical trials, which I'm sure you could post in the show notes. But that's a really interesting sort of, if you will mandate from the FDA to please be more inclusive, but for those in the community who may have attended that D data event from diabetes mine, and I can send you a link to the YouTube video, Dr. brandmark, who's at Children's Hospital in Washington, DC presented on diversity inclusion, specifically in diabetes technology research, and it was very illuminating on how white those trials are right? And what we need to do to better accommodate and to be more inclusive in a lot of different communities.

From a Tandem perspective, we are very committed to this, particularly in our post market studies, we encourage principal investigators to do the same who are looking at different research and the FDA is mandating it so it absolutely will be happening right? The FDA says you will be providing a trial with this type of diversity you will be doing that so I think that the that everybody is aware that this needs to happen and we're trying to figure out how best to do it and be responsible stewards and industry but for a long time you're right I mean, you know diabetes technology and automated insulin delivery trials were largely white, you know, you have to be able to take off of work right? Whether you're bringing your kids to your appointment or not. And so those are jobs with that allow some flexibility. You have to be able to afford to miss work right? You have to have paid some sort Lead, whether it's sick or personal days and, and all of that does impact the person that you recruit. Right. So being able to alleviate some of that maybe it's provide compensation, the FDA suggested providing compensation for parents that can't take off time from work or, you know, meeting people where they're out whether it's in qualified public health centers, or at schools or wherever, to make it easier for them to attend, whether it's clinical appointments or whatnot, but meet people where they're at and have people run the research that look like the people who will be in the research, right? So diversified that field as well. There's a lot that needs to be done here. And Tandem is absolutely committed to making this a priority.

 

Stacey Simms  50:42

That's great to hear. I'm interested in following up more about it not just with Tandem, you know, I feel like it's also a question of finding people who, you know, I have the same frustration with this podcast, how do I reach new communities? How do I find people who would maybe benefit from the information but don't know why I exist? Because I don't run in those circles, right? I mean, we tend to run in the same circles, and we need to branch out and not make people find us. But But fight. Right. So it's really, I think it's also a question of finding more. Look, I'm not an expert on this by any means. I probably shouldn't speculate. But it's also a question of, you know, finding staff that is of different races, me finding more guests that are of different races and are, are in different communities. It's for us to do the work, not to ask them to come to us. And so I'm really glad that Tandem is doing that and is on top of that. So thanks for answering that.

 

Molly McElwee Malloy   51:37

Yeah, there's a sea change coming in society and diversity and inclusion, and that will absolutely be translated at Tandem.

 

Stacey Simms  51:45

we've been talking for a long time, you've been really generous with your time. Just another quick question from a listener. And that is about the mobile app. I'll be honest with you, Benny doesn't use it a lot. He says he's waiting for bolus by phone. But someone said it wasn't that fast. In terms of uploading. Have you heard about that? Is that something that you're looking at?

 

Molly McElwee Malloy   52:03

Yeah, absolutely. And the reason that I think some people are experiencing that is that they haven't downloaded, they're pumping some time in, right. So whenever it last downloaded, it's going to append that data going forward. And so if you have a year's worth of data, or you have six months worth of data, that's not gotten to the cloud, that takes a while to get up there. So if you could download your pump First, if you've not downloaded in a long time to connect, or upload your pump, rather than that sort of relieves that burden to append the all the data that has never been there before. So if you could do that, and then let it sync, day after day, it will be much faster. It'll be much, much faster,

 

Stacey Simms  52:45

And we did that I should probably get on that. But it's Yes. Good. Hey, really, before I let you go, Molly, we haven't spent a lot of time on this interview, because you've been generous in the past to come on the show for really many years now. But I haven't spent time talking to you about your personal experiences. But as you mentioned, you know, you've been in this community not just living with diabetes, but you've been in the testing for the artificial pancreas projects for for what has become Control IQ for a very long time. Would you mind if I asked you just one more time? What is this like for you? We've had this elusive piece of software in the market with real people using it for a year. You've been testing it for I want to say almost 10 years. What's it like for you?

 

Molly McElwee Malloy   53:30

Yeah, yeah, it's professionally, 10 years, and personally, for 14. So it's a bit of a surreal experience. But it's also it's very cool, because I can see the improvements that need to be made. And I can see how they can be made. And it's been really, really cool to teach health care providers, and particularly, which is a big part of my job about reading the data and looking at insulin needs. And how do you make this look like you are how do you make this work with bass like you are? How do you make this work? easiest for your practice. And it's just been just to put it into practice has been really awesome. Because it's, we do get notes from users on social media and otherwise about how it's impacted their life and that they feel like a normal person now and that's all I've ever wanted, right as a person with diabetes is to like, give me back my personhood, where I'm not thinking about diabetes 24 seven, and I feel like Control IQ does that. You know, it's not Is it the be all end all? No, we will improve upon that. But you're never done right. But the fact that so many people have expressed that has been really rewarding. And I really want to see that carry forward and in all of our products that we relieve reduce burden for people with chronic disease. There's no other disease in the world where we asked somebody to do all the things we asked in diabetes. You know, if you have a heart condition, we don't ask you to beat your own heart. You know, we don't there's nothing else that we ask this much of people and then that we possibly make them feel bad or shame them for not achieving these things, which is kind of crazy. So reducing that burden and making this a more realistic disease to manage, is all I've ever wanted.

 

Stacey Simms  55:06

Well, I can't thank you enough for your personal participation in testing this out for years and years, as you said, 14 years and for being so accessible and coming on to answer all of these questions. So Molly, thanks so much. I look forward to talking to you more. I look forward to more improvements and exciting releases from Tandem. I know you'll keep us posted. I really appreciate your time.

 

Molly McElwee Malloy   55:26

Absolutely. Anytime. Thank you.

 

Announcer  55:34

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  55:39

Lots more information in the show notes. I'll link up some helpful things from Tandem and more information for you. And I did have a couple of follow ups. As you heard, Molly couldn't answer every question I had. So I got a couple of notes for Tandem that I want to share with you. Now, bolus by phone was submitted in the third quarter of last year. That is called mobile bolus. I don't know if there's a branded name for it. I did ask about that. But I hadn't heard back. But that has been submitted. It's in front of the FDA right now they're hoping to hear back in the first half of 2021. You know, it's hard as Molly did save with COVID, delaying everything, it's gonna be really hard to tell, as always, when the FDA will approve these things. But I'm so excited about that.

And I'm interested to see what it looks like practically, I'm going to say this with no knowledge of what was submitted, I do not have an inside track on what it would actually look like. So this is my speculation. You know, I imagine you just take out your phone and use it like your pump. Right? You can you'll have the full functionality. I don't know if that's really the case, I would imagine the FDA might be cautious. I don't know. But man, I just envisioned Benny, you know, he's got his phone in his hand half the day anyway. So beep beep, you know, let's go. Maybe that'll be their branding: beep beep Let's go.

They also let me know that Tandem is still planning to submit the Tsport to the FDA in the first half of 2021. And they are hoping for a quick turnaround possibly launching by the end of this year, which would be really exciting and nice to have another option there.

And a listener asked me about this. I didn't get it in time for this interview. But I did have a chance to ask Tandem about their agreement with Abbott, if you'll recall, Tandem and Abbott have an agreement to integrate with the Libre not just with the Dexcom. So there is apparently no update on that right now. But they are anticipating having one in the fourth quarter of 2021. We talk a lot about interoperability on this show. And you know, of course the dream is if a certain CGM isn't working for you, and another works better, you'll be able to slap that on and press a button on the pump. I don't think it's going to be that easy. But maybe down the road, I really do hope that we'll have more options. But if you had asked me five years ago, if the pump market would look like it's about to look right now, I think I would be pretty happy about that not just because of the great technology that's here from Tandem.

And we've been talking about what's next for Medtronic and Omni pod. But because we have more pump players coming to market, I am so excited to be talking to the folks from beta bionics and from Big Foot later on this year. So we will keep you posted. Innovations coming up next. Speaking of moving forward, we're going to be talking about exercise and CGM new guidelines for that and rare diabetes Could this be you it's really interesting what they're saying here.

But first, Diabetes Connections is brought to you by Dexcom. And we have been using the Dexcom G6 since it came out and we love it. It is amazing. The G6 is now FDA provided for no finger sticks for calibration and diabetes treatment decisions. We've been using the Dexcom for seven years now and it just keeps getting better. The G6 has longer sensor where that 10 day were now the sensor applicator is so much easier to use than it was in the past. We do love those alerts and alarms and that we can set them how we want if your glucose alerts and readings from the G6 do not match symptoms or expectations use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

Ran Across something I thought was really interesting for our innovations segment this week, and that is the RADIANT study. I will link this up. But radiant is recruiting people who have been diagnosed with diabetes, but they don't fit the usual characteristics of type one or type two. Apparently, this is not uncommon. I mean, most people really fit into the type one diabetes or type two diabetes. You've heard of Lada and 1.5 if you've listened to this show, but many types of diabetes are unknown, called a typical diabetes, and I really have never heard anything about this. So there's a new study called radiant, which stands for rare and a typical diabetes network and they want to discover more about what's going on here. You know, how do we better help these people? How do we treat this stuff, there's a lot more information on who qualifies are, how do you know i will link that up in the show notes, please check it out. And let's spread the word. Because this is really something that I think could make a big difference for people who are, you know, misdiagnosed or aren't getting the most from their treatment like, oh, it sounds like you have type two, but this isn't working for you. Let's get the word out and check out that link.

The other story in innovations is about new guidance for people with type one, and using continuous glucose monitoring for exercise. So there hasn't been a lot of information about this, you know how to use your CGM to safely and really exercise well. So this is new guidance from the European Association for the Study of diabetes and the International Society for pediatric and adolescent diabetes, basically, the European counterpart to the American Diabetes Association, and that second group has a narrower focus on younger people as you would assume from the name. But there are a lot of American researchers that you've heard of as the co authors on this, like JDRF CEO, Dr. Aaron Kowalski and Dr. Bruce Buckingham, who we just adore on this show. So anyway, there's a lot of information on this, I'm not going to go through what it says because I will link it up in the show notes and on the episode homepage. But it really gives you guidance in terms of if this than that, but also allowing for the complexity, because everybody with diabetes is just a little bit different, especially your exercise is going to be different to what it really like is it's not just about the exercise in the moment, they also talk about what to do later in the day and overnight. So good guidance here. Our innovations segment is for tips, tricks, hacks, studies, new stuff in the community. I also have our Tell me something good, which will return next week, please make sure you send me your good news stories for that I have a bunch that I've been holding on to can't wait to share next week. But I always like to hear from you. You can reach me Stacey at Diabetes connections.com, or drop into the Facebook group Diabetes Connections, the group and let me know what's going on.

Before I let you go quick reminder that the Fearless Diabetic summit is happening at the end of this month. This is a virtual summit that is free, you got a bunch of speakers, the videos are made, I was so excited to participate in this. And you can watch them for free for a couple of days, as many as you want. And then after that there is a fee to access. But you can check it out. I'll put a link in the show notes. But I think this is a great idea you can get kind of the appetizer and see what you like about it. And then if you want to delve further, you can go ahead and you know and pay for the content. I was not paid for my involvement, I was excited to take part I do have some goodies and freebies and stuff like that for people who are participating. So you can check that out. Also, mine I think is the only parent video that's in there. But there's lots of great information from athletes and endos and CDEs, you know, regardless of age.

Also, if you have a podcast or you're thinking of launching a podcast, diabetes, or otherwise watch my social posts, because by the time this episode airs, my new venture should be out there I am taking the dive to help other podcasters learn how to talk to sponsors, how to make money, frankly, from their shows, and how to do it ethically. And well, there's a lot of snake oil out there hanging, it's a lot like diabetes, there's a lot of not so great players out there in the podcasting space. And I'm excited to kind of help give people good advice that can help them get great shows out there and make them solid and make them more than a hobby. So watch for that. All right, lots to come. We're getting a great response for this tech heavy emphasis in 2021. Because my goodness, there's a lot out there. But we have much more than that. I'll be talking to some people with some great stories as well. And as usual, if you've got one or you've have something or a topic you'd like to hear, please reach out. I'm here for you. This podcast is to help, you know share our stories and get great information out there in this community. And if I'm not serving you, then I am not doing my job.

thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. Say a prayer for me as Benny is now behind you. Oh, my gosh, I did not know how nervous I would be about this day. I think I'm doing all right. We'll see. All right. I'll see you back here next week. Until then, be kind to yourself.

 

Benny   1:04:15

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged.

Jan 12, 2021

The Medtronic 770G pump was released in the United States just a few weeks ago and Robe Howe is one of the first to use it. Rob shares his first impressions and tells us what he'd really like to see in pump technology. (Rob is a paid ambassador for Medtronic, but they did not clear or review his comments for this interview).

Rob & Stacey spend a lot of this episode on other issues, talking about whether people with type 1 are "disabled" and what it means to use that word. Rob talks about achievement bias (and explains what that involves) and a lot more. We also find out about his fun modeling gig with Express and about his COVID-adjusted wedding in 2020.

Previous episodes about Medtronic here, including our in-depth discussion about the 770G and what else is on tap.

Our first episode with Rob Howe (all about using so-called Walmart insulin)

In Tell Me Something Good – legislative action, a diabetes blog gets a shout out and a new tip makes a difference for a site location.

And Stacey makes her predictions for 2021.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

Tell me something good links:

New Washington State Law Caps Insulin Price

type 2 blogs

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcription 

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities. By Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

Unknown Speaker  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:28

This week, Rob Howe is one of the first people in the US to use the new Medtronic 770Gpump. We'll talk about that. But our conversation got a lot more personal, including a discussion about whether most people with diabetes consider themselves disabled and everything that goes along with using that word.

 

Unknown Speaker  0:47

I want  to say like I Rob Howe, professional athlete, the guy who's goes and speaks and is like, you can do whatever you want. I identify as disabled, I am disabled, I have a disability. That doesn't mean that I'm not going to wake up tomorrow. And if my blood sugar's high, I'm just gonna quit and be like, you know, sayonara team

 

Stacey Simms  1:01

Rob is also a podcaster. And he turned a few questions around on me, we went a few places I wasn't expecting, including my hard “no” stance on Disney guest passes from years ago, and a lot more. And we do talk a lot about the 770G as well.

In Tell me something good legislative action, a diabetes blog gets a shout out and a new tip makes a big difference for site location. Plus, at the very end of the show, I'm going to do my predictions for diabetes in 2021, technology,  community, and more.

 

Stacey Simms  1:32

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome back to another week of the show. I am your host, Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin, my son was diagnosed with Type 1 14 years ago, my husband lives with type two, I don't have any type of diabetes. I'm the broadcaster. And that is how you get the podcast.

I released an episode on New Year's Day about the COVID vaccine. And we've had a big response to that the episode was about health care providers with type one who had received the very first batches some of the first people in the US to get that first of two COVID shots. But the response was mostly people wanting to know where they fall in the priority order for receiving it.

Dr. Ponder Dr. Steven Ponder was in that episode. And he's an endocrinologist in Texas. He had been trying to get Texas to allow type one into the higher tier. But it looks like this is going to vary state to state, I would urge you to jump into our Facebook group. It's Diabetes Connections, the group and I'm just start a thread. Let's try to get everybody up to speed whatever state you're in, link up the health department look up a news story that you know of let us know what's happening where you live.

Here in North Carolina, they're talking about chronic conditions for one of the phases but it's not clear if it's just type two with type one will be included. As Dr. Ponder said, How are they going to check? Right? Do we really want the people giving the vaccines to have to worry about you know, give me your paperwork or your type two type one. Where's your doctor's note? I mean, it's already so much less efficient than we all had hoped. I do think they are making good progress. As I'm taping this at the end of the first week of January. Here in North Carolina, where I live, they have announced that they will be using the National Guard to help out which I think is terrific. And as I mentioned with a husband who's got type two, with my 16 year old who has type one who is eligible for the vaccine, we are going to watch closely to see when it is our turn. But again, I'm hoping we can get a big Clearinghouse going in the Facebook group with information with sourced information about when and where the vaccine will be available, where you live.

My talk with Rob Howe about Medtronic and this talk really did turn into something more. It's not a typical interview for the show. I think we'll get to that in just a moment. But first Diabetes Connections is brought to you by Dario. And one of the things that makes diabetes management difficult for us. It really kind of annoys me and Benny, it's not really the big picture stuff, right? It's all the little tasks adding up. Are you sick of running out of strips? Do you need some direction or encouragement going forward with your diabetes management and with visibility into your trends help you on your wellness journey? The Daario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to My Dario dot com forward slash Diabetes Connections.

My guest this week has been on the show before with a very different focus. Rob Howe joined me two years ago to talk about so called Walmart insulin which he used for a while as kind of an experiment if you want to hear how it went. I will link up that episode from 2018. Just go to Diabetes connections.com click on this episode or the show notes wherever you're listening We have a pretty robust search on the website as well if you prefer to search it that way.

Rob is the host of the podcast, diabetics doing things. He is a former Washington Generals player. That's right. He's the bad guy. He was on the bad guy team against the world-famous Harlem Globetrotters. And this year, Rob became a model in a very cool campaign for Express and he got married. So Rob has a lot going on. And we've talked about quite a bit of it here.

There is also a video of this interview over on our YouTube channel on Diabetes Connections over on YouTube, if you prefer to watch it's kind of fun to be doing more video interviews, let me know what you think about that. In addition to the audio, Rob is a brand ambassador for Medtronic, and he started using their newest pump, the 770G in December, we talked about that, and then had a conversation about everything from the word disability to why I never got Benny, a guest assistance pass at Disney. In fact, I put my foot down and said no to what he calls achievement culture within the diabetes community.

Always great to catch up with Rob how from diabetics doing things, podcasts, and so many other things in the diabetes community. You become the go to emcee, I see you all over the place at virtual events. Thanks for jumping on. It's great to talk to you again.

 

Rob Howe 6:13

Yeah, thanks so much for having me. I've become what I call, and literally no one else says this except me. I'm the host with the most Insulet on board. So yeah.

 

Stacey Simms  6:23

Oh, I'm gonna steal that the next time I introduce you, I'll make sure to say that please

 

Rob Howe 6:26

  1. Please do.

 

Rob Howe 6:28

I love it. Well,

 

Stacey Simms  6:30

listen, we've got a lot to talk about today, I want to start off by just jumping in because the latest thing for you really has been not a change of technology. You've been a Medtronic guy for a long time. But you've got the latest version of Medtronic pump. So tell me, when did you start using the 770?

 

Rob Howe 6:49

Yeah, so I am very fortunate. I've worked with Medtronic for a long time. And I've been a patient of Medtronic for even longer. So today, as of recording, it's December 16. And I think I've been on the Medtronic 770Gnow since December 1, right around there. So it was in the first wave of of Medtronic, folks, employees Ambassador group to get access to the new pump. And it's exciting. I mean, I think for me, I've been on the 670 g now for almost three years. So you know, one of the criticisms of the new pump is that it really isn't very different, in turn from a technological standpoint, except it does have what we've always been very critical. And I mean, we as the diabetes, greater community of the 670 was that there was no Bluetooth connectivity to the phone. So I think this is Medtronic response to say, Hey, we hear you we got to have Bluetooth connectivity. And it's great. It actually, the app is super intuitive, the mini med mobile app and it has your basically your sensor glucose like you would normally see on your pump display, but it also has your 24 hour time and range. So just a quick little swipe, you can get over there and see your your 24 hour numbers, which is kind of nice, especially if you've had a really good day, you can see that you know those high time and range numbers. So it's exciting. And you know, I think for people who are, you know, really into the nitty gritty, it's also a new transmitter for the sensors. So it's still the Guardian three sensor, but a new GL three transmitter, which just has a few of the, you know, annoying, calibration tweaks that some people have, I think more vocal people than I have have, for sure lamented. So the the new transmitter is excellent and has fixed a lot of the challenges from the early days.

 

Stacey Simms  8:26

We talked to Medtronic a couple of weeks ago, and I'll link up that episode in the show notes here to go through all of the features and what's coming next. But it really is interesting how so often these companies and it's not just Medtronic, I would kind of compare it to Omnipod dash right so they have one version, then they almost have a stop gap, which has some improvements but isn't the big shiny thing that we're waiting for you know the if you're looking at the technology so carefully, which will be the 780 which is out in Europe and will be out soon. But you know, I have heard a couple of people who have used Medtronic for a long time like you have say the phone stuff would be nice but I don't really need it. And now that you have it, you really look at it more i mean i don't have diabetes and so I'm trying to get myself from following Benny so often to not looking at it 24 seven, but was it really that different for you to kind of just look at your phone more than your pump

 

Rob Howe 9:15

right now. I'm operating mostly from home so there isn't a you know, work meeting where I would feel better about pulling the phone out versus taking the pump out of my you know, pocket and I am an insulin pump in the pocket person so I don't wear like a holster or anything like that. And obviously Medtronic pumps have tubing, but I think it's nice to just be able to you know, you're on the phone all day all day. Anyway, I'll admit I spend a lot of time on my phone and being able to click over in the night. You know, I think that's been the time that I've used the app the most when you know in when I'm laying in bed,

 

Stacey Simms  9:47

I think it's huge to have it on the phone. My kid is a pump in the pocket kid too. And he would never look at it. If he didn't have to. He's on the phone and it would you say maybe a couple of directions. He it would be really a big deal. If he suddenly lost that which he hasn't even had for that long, right? Well, anyway, you get used to.

 

Rob Howe 10:04

Exactly. And I think that's where I think as consumers, and this is sort of my you know, before getting more and learning more about what goes into diabetes technology from a FDA approval standpoint, and all of the sort of hurdles that they have to go through, you know, I was sitting there streaming a movie on my iPhone on an airplane, and I'm like, wow, if I can stream a movie on my iPhone on an airplane, we for sure should be able to look at your blood sugar numbers on a phone. But I'm very much like Benny, I love the phone, very familiar with the interface, I use it quite a bit. So I think, you know, in terms of having that convenience, it's just so nice. It's kind of just takes away, you know, I think Medtronic has really done a nice job in past years. And also going forward of really relieving that mental burden and making diabetes integrated into your life. And this is definitely something that makes diabetes just more integrated in the way that you already use technology, the way that you're already on your phone. And I can get a push notification. Now my alert on high if I'm, you know, I got my high alert set at 160 get the alert on high, it pops up in my phone, just like a normal notification. And I can take care of it then. So yeah, I really love it. And I think that's kind of like what you said with Benny, you get really used to it really quickly of having it there and having those numbers all the time. So it's just nice to have it a little bit more integrated into our everyday life.

 

Stacey Simms  11:15

Are you a big auto mode guy? Do you use the features of the 670. And now the 770

 

Rob Howe 11:21

I am I stay in auto mode. I'm a big auto mode guy. And I think the criticisms that I see of it online are fair, and it's not perfect. And I think Medtronic has done a great job of talking about those, you know, initially, this was like 1.0 of the hybrid closed loop systems, you know, so the algorithm is now in technology world is a little dated. But now, like you said, mentioned 780 coming soon, in the US. You know, the next version of that, I think is really exciting. But for me, I'm an auto mode guy. And I think the the biggest example I'll give for listeners is I love to play golf, I have a weekly golf round that I play on Sunday mornings, and I set it on auto mode. And before auto mode, I would go out and you know, my basil would be what it was and I have to set a temp target or attempt basil and you know, even before cgms I just basically have to have gummy bears stashed in my golf bag. And on auto mode. Thankfully, you know, I go in with no insulin on board in the morning if my morning starts off really smooth. And I can go through my entire round walking or in the cart and not have to worry about correcting and not have to worry about high so it's it's really nice. I love auto mode. That Blue Shield gives me a lot of confidence.

 

Stacey Simms  12:25

That's awesome. It's funny though, looking at as we're recording this on video I can see into your house is basketball stuff all over the place. Now I know you're big basketball player. We've talked about that we talked in the past. So I'm interested that you brought up golf and rather than basketball.

 

Rob Howe 12:38

Well, you know, I'm aging gracefully, Stacy. Like, you know, I think I still love playing basketball. And I think that's one thing that sentimentally I think there's been so many terrible things that have been taken from us because of COVID. And the thing that's been really eating away at my heart, and my soul is not being able to play basketball and because it's just not safe. And I think in Dallas, especially we have so many cases and I've been able to do some training in a gym, by myself wearing a mask, but I just missed competing and I think golf, you know, you're competing against yourself. So it kind of scratches my itch a little bit. So that's been my COVID pivot.

 

Stacey Simms  13:14

That's awesome. I've been playing golf since I was 22. So I'll take you out sometime when we got

 

Rob Howe 13:18

ready to say no more. I'm ready.

 

Stacey Simms  13:22

You know, one of the things that really made me smile in the last couple of weeks was that terrific video you posted. Your it was it was announcing the partnership you have with Medtronic now but the video itself was so great. It was you know, if you haven't seen it, we'll link it up. How would you describe that like an athlete grabbing a sponsorship or getting recruited for a team?

 

Rob Howe 13:42

Yeah, you know, I, I was stuck on this concept of signing day. And this announcement, this announcement kind of felt like that. And for me, you know, I've worked with Medtronic for a number of years as an ambassador as a consultant. And now kind of deepening that partnership into a more formal role. It just came to mind. And I thought, you know, this is true to who I am as an athlete, and seems like a fun way for and you know, that's a big part of what we're working on together is doing some outside the box, maybe not traditional Medtronic type announcements. And I would classify this as sort of in that realm. And I'm just very fortunate that my team and Medtronic is so on board with hearing sort of outside the box ideas. And so getting to produce this fake press conference about my signing day and learning that there are no Medtronic hats and having to get a Medtronic hat made for me to put on so now I have like the one on one of one Medtronic cat, which I love. It was really cool. And the response was great. And again, I just I'm glad that my team didn't roll their eyes at the pitch. They were like, Oh, yeah, this actually sounds great. We'll we'll do this. And I can only imagine as it went through legal what legal was thinking of just reviewing that video, so very fun. That is funny. I

 

Stacey Simms  14:48

think I have one of the remaining animus shirts left in existence from what I used to do appearances for them.

 

Rob Howe 14:54

Yeah, you gotta gotta save that merge. It's like it's retro. You know?

 

Rob Howe 14:57

That's really funny.

 

Stacey Simms  15:04

Right back to Robin just a moment, but first Diabetes Connections is brought to you by g Volk, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Jeeva kaipa pen comes in. It's the first auto injector to treat very low blood sugar. chivo hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give GMO correctly. I'm so glad to have something new, find out more, go to Diabetes connections.com and click on the G book logo. g Vox shouldn't be used in patients with pheochromocytoma or insulinoma visit g VOCA glucagon comm slash risk. Now back to rob, and he is talking about new technology that he's looking forward to.

 

Rob Howe 15:52

I'm very excited about the integration of the phone as the software back end to the pumps and the devices. I think that adding diabetes technology to the Internet of Things is a huge milestone in healthcare. It's a huge milestone for people with diabetes. And it's just going to make this whole user experience more intuitive. I think the DIY loop community has shown how you know how powerful it can be when technology and people helping each other and really dialing in features that they need and that are important. And working with some of these larger manufacturers, I think kind of opened up this Pandora's box of questions for these bigger companies to ask themselves are our technologies right for our customers, are we meeting them where they are, and I'm sure as you encountered in your conversations with Medtronic, that's a big focus for them right now is meeting patients with diabetes where they are. So you know, you've seen this year now the acquisition of companion medical, to bring multiple daily injections into the Medtronic suite, which previously they were a pump company. And I think now they're really focusing themselves on being a diabetes technology company, which is cool. And I think it's good for patients good for Medtronic good all around?

 

Stacey Simms  17:01

Well, it's interesting, because for years, people were saying, you know, this stuff's got to look better, you live with it, it's on your body, you want it to look less like a medical device. And there was a lot of pushback from people within the community, as well as on the technical side, who were saying who cares, just make it work better. And I think we are at a place now at a point now where there is enough, even though there seems to be fewer pump companies, there's enough competition, that they do have to look good, they do have to feel better. I mean, I don't remember what you used when you were first diagnosed, but it's changed a lot in the Gosh, in the almost 14 years I've been he's been using an insulin pump, it's not a brick anymore.

 

Rob Howe 17:35

Right, it doesn't have a Gameboy screen, it doesn't look like a calculator, you know, I think all that really comes down to me is just user experience in general. And you look at iPhone, for example, and the transformative qualities that that piece of technology has had on society in general. And I think that that is sort of the the gold standard now and that filters down to healthcare companies, something that we talked about in my agency world is that, you know, most people, when they think of competition, they think of, you know, immediately in their industry, their top two or three competitors. for consumers, they don't look at it necessarily that way, they're looking at you online as your competition is Apple, and Chase, and Amazon. And if your online experience, if your device experience doesn't mirror those, and isn't on par with those companies, which is really unfair for a lot of businesses, a lot of brands, because they're they don't have the ability that or the scale or the infrastructure to deploy at that level. But if you're not on par with those companies, users will tune out, they're looking for best in class. So I think that's been a big shift for all the major diabetes technology companies, and I think outside of diabetes as well.

 

Stacey Simms  18:40

Alright, let's move on just one of those other issues, you and I saw a conversation online that we wanted to talk about, I think this was mostly on Twitter, where the word disabled or disability, it's interesting when using that with diabetes, because Ben, he was diagnosed before he was two. And all I heard for this first few years was he can do anything, it's not going to stop him. But then you get to school. And it's like, he needs a 504 plan because he has a disability. And he's covered. I have my own take on it. And I'm curious what you think is the person who lives with diabetes? Is that a bad word for you?

 

Rob Howe 19:11

You know, that's really interesting. I seen that conversation. I think I want first of all people to know that I see both sides. I think I see people who argue on one side or the other. I you are seeing and I think for me, it's very similar to your story of Benny, you know, I was told from the get go from the jump that whatever dreams you have for your life are still within reach. I have perpetuated that idea at the beginning of all of my talks, all of my messaging, I believe I'm living proof that you can do things with diabetes if you want to and take care of yourself. I mean, there's other factors involved, obviously, but at the same time, I think denying the fact that you're disabled denies all the hard work that you put into your life to stay alive every day. And let's be honest, I think none of us would put the amount of work mental, physical, financial into anything else that we put into diabetes without compensation, expected compensation or some sort of like just reward you know, and I think that's really where it nails home for me is like if you factually like scientifically, under the Americans with Disabilities Act or the ADA, people with diabetes have a disability. That doesn't mean that you can't do the things that you want to do. But it also doesn't mean that you're not disabled. And what really reinforced this for me was a few months ago, there is a documentary on Netflix called Pistorius, which is about Oscar Pistorius, the Olympian who was born with defects in his legs, and he runs on the Nike blades, the legs that that allow disabled runners to run. And he competed not only in the in the Paralympic Games, but also against non disabled athletes. But in this documentary, and obviously, tragically, he murdered his girlfriend, killed his girlfriend, and you know, is on permanent house arrest, I believe it was so interesting to see the rhetoric by which he referred to his situation, his disability, and he's like, I don't identify as disabled. And that was something that I think, in the early years of my life with diabetes, when I was a younger man, less gray hair. But I identified with that I was like, I don't want people to treat me differently, I want to show them that I can do this. But when you deny that disability, again, when you when you close yourself off from things like diabetes community, when you close yourself off from benefits, like your 504, when you close yourself off to identifying as disabled or taking advantage, God forbid, you don't take advantage of the concessions that have been granted to you because of the struggle and the burden that you're carrying because of this disease. You know, I think you close yourself off to all the work that you're doing. And that's really where I want people to know that like, hey, yeah, I at face value, am a fit, athletics, successful, quote, unquote, successful person with diabetes, but I very much identify with Own your disability, that doesn't make you and I think there's a lot of conversations about ableism that I think we as a culture need to do better about because I think you alienate people who are disabled by saying, Well, I'm not I don't identify as disabled or I have a disability, but I'm not disabled, I think those are our negative, you know, negatively affect people who you know, really identify as disabled. So I want to say like, I Rob, how professional athlete, you know, the guy who goes and speaks and it's like, you can do whatever you want, I identify as disabled, I am disabled, I have a disability, that doesn't mean that I'm not going to wake up tomorrow. And if my blood sugar's high, I'm just going to quit and be like, you know, what, sign our team, but it What it does mean is that I see you out there struggling, the burden of diabetes is taxing, I feel you, I see you. And I think it's better for all of us to just work harder on accepting the fact that with diabetes, you have a disability that allows you some advantages, and allows you access to some things that people without this disability don't have access to. And to deny yourself that is, I think, a disservice to yourself.

 

Stacey Simms  22:57

It's such an interesting topic, because you really centered on what bothers me the most about it. And that is that as a society, we look down on disabled people in our language and our actions, it's just baked in. And it's come out so much better in the last few years that we're even able to talk about it. You know, even in the elections, I never thought about that. You know how we don't help. We don't even make it equal access for people with disabilities. And so there's this whole society burden of not wanting to admit that we have anything wrong with us, because then we're stigmatized, it doesn't even it's not even just diabetes. But I also think that, you know, trying to raise a child with type one, many would never say, I don't think he would say even today, and you know, it's not it's his voice is not mine to speak for, I don't think he would say I have a disability, I don't think he would raise his hand like you were doing. But I do think that he should, because all of the fights that have gone before, you know, it's easy, or it's easy, it's never easy, but it's easier to be a elementary school kid or a middle school kid. Now with a pump or a CGM. And with all the education and with a 504, than it would have been in the 70s, or the 80s, when a kid was doing shots and couldn't leave to go to the bathroom, and we've heard all these horrible stories or an employee back then it wasn't protected. And I will say he's had an easier because he has a lot of access and a lot of privilege, you know, these words that we throw around, but he really does. He's got me as his mother with a big mouth and a microphone. But also, you know, I guess I'm trying to say is all that work that went into protecting people with disabilities, as you said, it's really important to honor now, and to understand that if you're a cashier, and this happened in North Carolina, and in other states, leave your cashier at the Piggly Wiggly, and you need to treat your blood sugar with juice, and they won't let you you're covered. You're not gonna lose your job, we're gonna get paid back. And that's the kind of coverage that I think we need to think more about. But I will tell you a funny story about how I didn't help me and I stand by this when we went to we've gone to Disney World many times never been to Disneyland. We live on the East Coast but we've been to Disney World many times. We've never used the disability pass or the guest assistance. Pass or whatever they call it. The reason is, because when we first started talking about it, it was presented to us like a reward. It was like, Oh, you have diabetes, you have this great thing, and you can cut all the lines. And it wasn't presented to me as, hey, Benny might have a low blood sugar or might have a high low blood sugar, you know, high situation, you might need it. And I said to myself, I'm a crazy Disney planner, like, I am good to go. We don't wait in lines, whenever because I plan it. I'm, I love it. So we never did it. And I've talked about this, I was called out on it at a conference, once we're just having a casual conversation, and somebody in their 20s said to me, you know, you're doing him a disservice, because you're teaching him that he shouldn't take advantage of what's out there. And I said, Well, he shouldn't because it's not a reward. And she said, it's not a reward. It's not like a golden ticket, it's there if he needs it. And if you don't need it, fine. But if he needs it, when he goes, he shouldn't feel bad about using it. And she reframed the whole thing for me, and we still haven't had to use it. But I have definitely been less judgmental, and Kinder about other parents that I know who have used it. So if you're somebody that I've, I've been snarky too. I apologize. That's what I think

 

Rob Howe 26:05

that speaks to your capacity to learn, Stacy, I mean, you know, we all this would be shocking, probably not to no one. But we don't always make the right decision. You know, and we learn new information. And we reframe conversations. And, you know, I'll piggyback on that I, when I was younger, I was traveling a lot for basketball. And I like to get on the plane early, because I was like, Oh, I'm flying Southwest, I'm in the the B section, I'm not going to get a great seat. But since I have diabetes, that's, that's all good, I can go get whatever seat that I want. And then I stopped doing that. And I did that bait for a couple of reasons. I think consciously, I would see people who needed real assistance to board the plane early. And I wanted to be respectful of their space. And whether it's wheeled wheelchair access, or, you know, just extra medical supplies, I find that the you know, like the the accommodation that is made on airlines for people with diabetes is mostly to make sure they can get their medical supplies nearby on with them. And I, for the most part, my supplies, because I'm a dude probably are always a smaller footprint than some of my lady counterparts. And also, maybe I'm just a little bit more of a free spirit and be like, Hey, you know what I'm going to take, I'm going to be out of town for a week, I'm going to take two or three infusion sets and a couple of miles Insulet in my backpack, and we're going to go for it. So it was always close by to me anyway, and all that to say I don't do it today. But I know it's an option. And if I feel like the flight is oversold, or I'm gonna have to make a quick connection, and I want to make sure that my medicine is within reach, I will take advantage of it because I know it's there. And I think having that knowledge and being willing to accept that assistance except those accommodations. And and knowing that that space is available for you is positive. Yeah,

 

Stacey Simms  27:51

I mean, for me, as I have learned and changed my mind, and I probably will continue to my philosophy is now if you need it, or think you might take it, it's there to help you if you think it's going to you know it be if there's someone else's more need. If you know you don't need something, right. It's like parking in a handicapped spot. When you really don't need it, you're driving your grandmother's card, it's got the ticket on it, and you're just like I'm in a hurry. Don't do that. Right. But you know, but if you need it, use it. And don't be embarrassed or ashamed. And I hope all of you don't even know how to if I'm even saying this the right way.

 

Rob Howe 28:27

I think there is there is shame wrongfully pointed out, people who look. And I think that's back to that sort of ableism narrative perpetuated in this country. You mentioned like the election. I'll give you another example. Governor Greg Abbott in Texas is in a wheelchair. He had a there was an accident when he was a child, and it caused him to be paralyzed from the waist down. So while I don't agree with a lot of the things that he does, politically, I stay away. And there's been a very big movement online of people who disagree with him, staying away from the low hanging fruit of making fun of his wheelchair, and his disability, because that's not what makes him make poor decisions. from a policy standpoint. That's just the easiest, most that's just like a kid, when you're young kids pointed the first different thing that they can see. And oftentimes, that's very hurtful. But we are adults. And we can see that, you know, that that's unproductive. And I think, again, coming back to not not alienating anyone who has a disability. It's it's more focusing on policy and actual, you know, politics in the case of Governor Abbott that are detrimental to what's going on here, not his disability, I think his disability is completely off of the ballot.

 

Stacey Simms  29:37

Yeah, it should be it really should be in the diabetes, so much of what you all deal with is invisible, or, you know, you're able to make it invisible. So it's even harder in some ways. So I don't know. And I

 

Rob Howe 29:48

mean, I think even even on that point, there seemingly is a stigma to, you know, letting your diabetes be shown. And I think there's a lot of people who share they're now very proud of their cgms they're proud of their pumps. To wear them out. They're proud of sharing their numbers on social media. I you know, I get a lot of laughs from people sharing your 69 blood sugar's with me and, you know, I think that that sort of empowerment and saying hey I can I can be publicly facing with this and there's a community with that is great because, you know, look at me I'm like the poster child for some of the negative achievement culture things around diabetes I am you know, handsome white guy who used to have a six pack and you know, got to play sports and live his best life. And you know, he's not held down by his diabetes and what you don't see our bloody sights. And you know, all of the adhesive that you got to wipe off your arm after you change the site, or, you know, the feeling of less than after you're at a pool party pre COVID, and your site got too wet and you got pulled out really easily and you have to go home, you know, or just waking up on a vacation with a high blood sugar and it ruined your day. Like, those things don't always get shown. And I need to be better about sharing some of those low moments personally, on our platforms. But you know, just because you're not you don't look like a Olympic endurance champion with, you know, hollywood abs and a great tan and you know, living in your best life always time in range at 100%. If that doesn't sound like you, that's super okay. And I see you and that doesn't mean that your life with diabetes is less than I think there's there's downsides. And I and I've benefited a lot from achievement, culture and diabetes, but my love, I'm an I'm an achiever, that's what I try it. That's, that's sort of wired into me. And, you know, as I get older, I learn more about myself and why I do things. And I love following the rules. I love having a structure so I can try to achieve that's just what speaks to me.

 

Stacey Simms  31:40

Wait, I need to ask you though. Okay. I love everything. You've said, achievement culture, though. I'm not up on that as the world's worst diabetes. Mom. I mean, I'm kidding. But you know, I'm all about mistakes. And that's been my platform. And I mean, my brand, I have to call it that. But that's truly how I parent and I've never gone for more I'm what does it cheapen culture mean? Is that that you can do anything? Or I'm only showing the beautiful stuff? or What

 

Rob Howe 32:04

does that mean? I think that's part of it. I'll reinforce something that I'm sure will speak to you, in a way think about podcast guests. What's more interesting to someone who like at face value, we have two people, we've got a mom with three kids who gets her kids to school on time, leaves with diabetes, and you know, is just juggling a regular life. Or we have you know, two time Olympian bobsledder who, you know, has been around the world 50 times and you know, has been on the ESPN body issue or whatever the case, right? So at face value as a journalist, who are you going to pick for the more juicy story? Yeah, the bobsled guy, the guy, the boss like guy. And I don't know, any type ones that bobsled. So I think it's a good sport, because I'm not singling anybody out in particular. But I think as a diabetes community, I have also been guilty of like, Oh, I'm in this position where I can go speak or I can have, you know, people follow me and they follow the podcast, and I get these opportunities to represent people with diabetes. So I got into this sort of negative pattern of thinking where I was like, What do I have to do next? Like, what is my, I've already given my podcast, talk to all these jdrf chapters? Well, they're not going to invite me back next year to give the same talk, I've got to do something else that achieve something else. So like, right now, even the talk that I give is called from professional basketball player to professional diabetic. And inherently in that title, while it is good, and people click on it is ableism. And it's like, oh, you're only worth speaking at these events. If you achieve something crazy, like proven playing pro sports. And I think I'm really trying to be more aware and more, not cautious is the wrong word. But just more mindful of the things that I say and the things that I do that are rooted in an achievement culture that rewards extraordinary feats, and also tends to erase living a normal life and making that unsuccessful.

 

Stacey Simms  33:56

I'm going to arm chair psychologize on why it didn't resonate with me, moms aren't allowed to have achievement culture, we are not allowed. And I'm using that term very loosely, because Screw it, I'll do whatever I want. You won't allow me. But truly, if my brand was the best diabetes, Mom, I got it right. And you don't or professional mom, right? You're not going to see anybody talking about that, because we don't talk about moms that way. And I think that's, I know, this isn't about me, I'm glad to have you on as a guest. But I couldn't help but share that because of what you said, I was thinking to myself, How on earth would I achieve something like that? Or what can i and it's really interesting to think about it in those terms. And I think a lot of diabetes moms, what resonates with us is you know, oh, I'm the worst I made a mistake. I'm failing my kid, I got a report card. You know, it's all this negative talk. And that's a problem in and of itself. And you got other things to work on. You got to worry about. I'm succeeding. I'm great. You want to bring me to talk because I'm doing so well. It's so fascinating how we can do this.

 

Rob Howe 35:00

You know, and I think too, you know, speaking to diabetes moms, which I love, and I think that's a demographic of people, I never thought I would get to meet as intimately as I have. And, you know, I think people like me, and people who achieve are great to show to kids, you know, because hey, look at look at Rob, he's living his best life. He has a podcast, he talks about diabetes, he's not embarrassed. And I live for those moments where I can be the person that I needed when I was 16 years old, and have somebody who's accessible and wants to give back and wants to have those hard conversations and can say, you know what, I do see you man, like, you know, your 16 year mom doesn't know what's going on. You don't want to talk to her. And somehow I managed to remain young looking enough that I can communicate with somebody, hopefully,

 

Stacey Simms  35:43

you when you talk, you're like with Newsela What are you like, 30?

 

Rob Howe 35:46

I'd like 32. So yeah, I mean, I see. But you know, Stacy, you're not on tik tok. Right, you know, you know, if you put me on Tick tock, I'd be so canceled. I can't dance. You know, I mean, so I think for me, I just want to try to remain like as tuned into what people with diabetes are going through, that they may not even be aware of. And I think this is in this sort of chronic, all the chronic things that we're juggling, I think chronic focus on achievement, within, you know, some of the diabetes online community cultures is important for us to call out and I think I've benefited from it. And it's important for me, it's important to me, that I make sure to bring people in, who maybe haven't benefited from it and use that to highlight important stories, because you know, what's crazy, and surprised me back to the podcast example, when I first started, and I was really, really digging into what episodes are resonating with people, the one that was far and away the most resonant of my first like 15 episodes, was really the most simple basic, it was a story of a type one mom and how she prepared for her first and second pregnancies with T one D. And, you know, for me at the time, like a 27 year old jock tech bro. I was like, you know, it was a great conversation. And my my friend, Lindsay, who's my friend in real life, did an amazing job. But I never would have guessed that that would be the one that would have taken off of the first group. And it wasn't necessarily the achievers. It's the people who achieve in spite of there being no big reward publicly.

 

Stacey Simms  37:15

Yeah, well, I think we need and I know you'll agree with this, we need everybody in this community, right? We need the people who go up Mount Everest meet the people sitting at the desk job. But what has resonated with my listeners is anybody they can learn from. And I think it's interesting. And especially at first you want those high, high achieving successful people, those Olympians, and those rock stars, because as a parent of a kid, you can look at this person and say, Okay, this person was type one is super successful. So my kid probably has a pretty good chance of being a mid level executive, you know, at Staples, or whatever, right? They're going to be okay, or IBM, I shouldn't, whenever IBM even exists anymore, I'll show my age. But, you know, we do need those other people who have shown us how it's done something as complicated as a pregnancy with type one to something as simple as, it's not really that simple. But how did you transition from elementary school to middle school with your kid, right? Those are the things that we all want to learn. And I think what's really cool about social media, and somebody like you who's you know, super big on Instagram, and all that stuff, is you get to show, as you said, the cool looking stuff, but you know, it looks great, it looks perfect, but then it's also a chance to show all those crummy site changes. And those days when you don't feel good. And you don't have to polish it all up. I mean, you just snap a picture or talk about an Instagram. And you do that all the time. I think it's great.

 

Rob Howe 38:29

Yeah, it's new. You know, I think maybe I've even mentioned it before in this pod. But in 2018, at ADA, I found this poster board study in the in the poster Hall, talking about the ANC outcomes and involvement in the diabetes online community. I mean, just that sort of osmosis of encountering people with diabetes on a regular basis, and the things that they do makes you better at diabetes, I don't know. It's just it's normalizing. And I think that's what's so important, and what the Internet has brought. And I think even still, I'm even more learning about sort of the micro communities and diabetes, where you're able to find people that look like you people that are interested in the things that you're looking for. And otherwise, like, where would you find those people. And you go back to when Benny was diagnosed, you basically had the only people in your immediate area were the people that you could stay in contact with early blogs, maybe kind of just starting to sprout. And now you can just go to some of these big diabetes accounts and search for people or look on the hashtag and look at the locations and say, well, wow, there's somebody with diabetes there. You know, I got to be a part of this really great campaign this summer with express a global brand, you know, and

 

Stacey Simms  39:34

Oh, yeah. Wait a second. Wait a second. Tell me about that. Because that wasn't diabetes, you're like this, like a model? I mean, right. Or model. What was that? That was amazing.

 

Rob Howe 39:42

I can I guess I can put like publish model on my resume. Now. You know, what's cool about that campaign, and first of all, the Express team was really great to work with. They're all pros. And I think just hearing sort of the creative outline of what they were trying to do as a person with diabetes as a person with a disability as a person with something that makes them different, was just really cool to be there representing people with diabetes. So they sent out like a cold casting call, it had a bunch of stuff, as you know, or maybe not like, I'm very interested in fashion, I love style is something that I just I don't know why you

 

Stacey Simms  40:16

post your outfits on Instagram,

 

Rob Howe 40:19

feel free to gather fit pics are my thing. I love them. And you know, my wife and I are currently you know, just having a turf war over who needs more closet space. And I will not lose, I will not lose that, that I just don't put it on put on record. But the cool thing about Express was they said, Hey, we're looking for people who are on Instagram, but it's not a requirement. We're looking for people who have some sort of social good or community type. It's not required. We're looking for people who have an interest in fashion, but it's not required. And I was like, wait a minute, I have all three of those things. Let me like really try to get this. And so it was a cold call. I put together a pretty good application and response. And then I set it and forget it. And like it was 90 days later until they got back to me. And I sort of put it out of my mind. And they said, Hey, Rob, like, we're really excited to have you part of this campaign. Like, can you talk on this day? And I was like, wait a minute, did I book it? And they said, Yes. And so it was really cool to be able to out a big panel. I know, first of all, I was all over the world. inexpressive. I mean, it was a year of COVID, obviously, so not as many people saw me, but like on the front page of Express calm, very visible. And I was not just a model, I was representing myself, I was like Rob, like, hey, Rob is the Express model, and he lives with diabetes. And that was something I had never experienced on a mainstream level before. It's one thing to go to these diabetes events and celebrate those all together. But to be different on a panel full of other amazing superstars, frankly, like, who have achieved way more than I have. I was there as a person with diabetes. And I got to talk about like at base level what type 1 diabetes is and talking about the insulin affordability and talking about what it's like to have an insulin pump attached to your body at all times. And to see people be like, wow, I had no idea about any of that was just really cool to be a part of and like tan France from queer. I was the host on one with tan France. It was unbelievable.

 

Stacey Simms  42:07

Was he nice?

 

Rob Howe 42:08

Oh, yeah. Oh, how can he he's like he was so giving. He seems like the nicest guy, an absolute Pro. And honestly, I've done a lot of interviews. I was admittedly not really super nervous for our conversation today. Because I know you and I figured it would be nice and easy, but I was like sweating bullets. Getting ready in my like this in this office in here for 10. France. I was like, like, What's my name? Like? What do I do just like to make sure I don't stumble, you know, but it was a really awesome experience. I'm so grateful to have had the opportunity. And, you know, hopefully it's the the first of many. That's awesome. You know,

 

Stacey Simms  42:39

I worked at Express. When I was in college, I worked at the express in the carousel center mall in Syracuse. So if you shopped there in 1991 or 92, I helped you out. Not you, Rob, you're looking like you're looking through the time. You were not there. It might be wondering. Well, the

 

Rob Howe 42:57

thing I was actually thinking about is my wife was born in Cheryl in New York. So he was born in 1991. So maybe her mom this call

 

Rob Howe 43:05

is over?

 

Rob Howe 43:06

Yeah. Yeah, sorry. Technical difficulties were not cut off. But yes, my wife is a is younger than I am. Which is really funny. And yeah, that's a small world. I didn't know that. You had the upstate New York time?

 

Stacey Simms  43:19

Oh, yes. I went to Syracuse University. And then my first job was in Utica. And then I moved back to Syracuse for my another job. And then I came to Charlotte where I am now. I was up there for 10 years in the snow.

 

Rob Howe 43:30

Oh man. very snowy. Very Yeah.

 

Stacey Simms  43:31

But I grew up. I grew up in New York, so not too far.

 

Rob Howe 43:33

People were asking me like, so do you shop at Express. And I said, You know, I haven't shopped there recently as much. But when I was getting my first job, and I needed to get rid of my college, bro clothes and like, put on some real professional clothes I went to express so it was like cool to be like, oh, they're like, yeah, like, that's a big part of the consumer that we're trying to reach. And you know, really people who have an interest in fashion, this is a first step for them. And it was it was cool to be very, I felt very seen and very, the team that express was awesome.

 

Stacey Simms  44:01

That's terrific. Yeah, I worked there. And then I got a job at a radio station in Syracuse. And then that was the end of that. never looked back and worked weekends. Why are

 

Rob Howe 44:09

you found it you found your Yeah,

 

Stacey Simms  44:12

I knew what I wanted to do was very cool. Are you going to be working on things like that is modeling something you would like to continue to pursue or the fashion industry?

 

Rob Howe 44:20

Yeah, tell me what you're advertising I do to being a model for Express wasn't on my vision board for 2020. But I don't know, it was cool. It was just just to be a part of it to, you know, be in front of camera. Like you mentioned, I work in advertising and have been parts of shoots like this, behind the camera and working on the campaign and working on the creative direction, but to be in front of the camera and kind of collaborate with people whose jobs I know intimately. And it was a very small crew because of COVID. And they came they came to Dallas and it was cool to just be able to be in a small collaborative group of people who like I was just a photographer, the director and the videographer and myself. And we just got to hang out all day and talk about ideas and be creative and Yeah, I think I would love to do that again.

 

Stacey Simms  45:01

Nice. You know, we've been talking for a long time, I didn't even ask you or congratulate you on your wedding, which happened this year. Yeah. So congratulations on that. That's Thank you big, big,

 

Rob Howe 45:10

wiseguy big fan of my wife.

 

Stacey Simms  45:13

Good to hear good to hear what's up with you all in 2021. I mean, you're moving ahead with Medtronic. Moving on with the ad agency, you are married, man. I mean, 2020 was a difficult year, let's admit that. But any anything on top, I think I'm almost afraid to plan for 2021 in a way,

 

Rob Howe 45:29

me too. I I don't want to get too far ahead of my skis, you know, I think we are still a ways away of putting COVID completely behind us. And I also want to be very present in like, how What a tragedy it is. And I think even personally, within my friend group, there's been some very recent developments that are just awful. So I think we need time to heal. And I think we need time to, you know, mourn sort of our old selves, you know, like it or not one way or the other, we're all different because of 2020. And hopefully, we can build sort of on the ashes of everything and be better to each other longer term. We got some cool projects. I think this this question came from Peter from the, from the Instagram story that I posted the other day. And, you know, we're I have a cool series that I'm working on called more than a diabetic, which is going to be debuting next year with some awesome community members. So that's up first. You know, in terms of brand partnerships, obviously, Medtronic has a couple other long term partners that I've had that I want to do some deeper, cooler campaigns with, I'm sort of in a, I don't need new stuff I really want to care for and sort of nurture my existing relationships. And my existing, I don't know whether partnerships are you know, I have my a lot of irons in the fire, I don't need more irons, I need to just really focus on you know, my relationship with my wife, my relationship, my family, my my two businesses, and really focusing on being a good steward of what we have and continuing to do, right for people with diabetes. That sounds like a great plan. I want to have some fun, you know?

 

Stacey Simms  46:55

Yeah, definitely. And hopefully, we can see each other again and travel a little bit towards the end of the year. And I would just love that. That would be wonderful for me.

 

Rob Howe 47:03

Yeah. If I want to manifest anything for 2021, I put my hands in the air because I'm manifesting this my manifesting. Okay, if you're listening, you're missing out. I want to go on a honeymoon with my wife in 20. Oh, love that. That would be a fun thing. Travel, you got my wheels turning, I love to travel. And I have missed that sort of being held down at the house this year. So Excellent. Well,

 

Stacey Simms  47:22

I hope we can do that. I'll keep you posted on anything I can help with. Thank you so much for spending some time with me, Rob, it's always fun to catch up. And you caught me, you know, me talking more than I usually do on these interviews, I think but thank you.

 

Rob Howe 47:33

I like that. I think it's just the my inner interviewer. And, you know, thank you for all the work that you put in Diabetes Connections. I think when you're a diabetes mom, there's so much work that goes into that anyway, and I just applaud people like you. And then frankly, there aren't that many like you at this point. You've been doing this a long time and do a great job. So I hold you in high regard. I'll just leave it at that you do a great job and I appreciate you.

 

Stacey Simms  47:55

Well, that's very good. Thanks, Rob.

 

Announcer 48:02

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  48:08

I'll link up lots more information about the topics we spoke about, especially the Medtronic pump if you'd like more information on that, and you can go back just a couple of episodes. We had the folks Medtronic on in the fall of 2020. To go through all of the details. I'll link that up in this episode as well.

And I'll put a link into Rob's Instagram where you can see everything we talked about. He is quite prolific on Instagram and his wonderful wedding photos, the modeling, even the Medtronic signing announcement that I kind of teased him about there. It was great to talk to him and I hope it was okay that I talked so much. It was odd to be on the other side of the microphone, but it was fun to hopefully you enjoyed it as well.

We are going to have my favorite segment of the week coming up Tell me something good. But first Diabetes Connections is brought to you by Dexcom. It is so hard to believe with Benny 16 years old now, almost six feet tall that he was ever a toddler. And I mean it was also just like it was yesterday. It's bananas. When you have a toddler diagnosed with type one. You do hear rumblings for a long time about the teen years people start scaring you about that right away. But when it hit us at full force a little early, I was really glad we had Dexcom Benny's insulin needs started going way up around age 11 and along with the hormone swings all the growth, I cannot imagine managing diabetes without the dexcom continuous glucose monitoring system. We can react more quickly to highs and lows. see trends adjust insulin doses with advice from our endocrinologist. I know using the Dexcom g six has helped improve Benny's agency and his overall health. If your glucose alerts and readings for the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more Just go to Diabetes connections.com and click on the Dexcom logo.

 

I got a bunch of Tell me something good submissions this week. So if you are not featured and you popped one into the Facebook group. Please stay tuned I will be sharing them in the weeks to come. Corinna posted a great article from Washington and New laws taking effect this year from Washington State caps the cost of insulin at $100 per month health plans issued or renewed after January 1 2021. Must cap Insulet co pays deductibles and other forms of cost sharing at $100 per 30 day supply. I'll link up that article and I do think we're gonna see more and more legislative action this year and next year when it comes to insulin so Corinna thanks for sharing that

and Corinna’s blog also got an honor. Recently, she writes type two musings, and she was featured in an article on everyday health about the top type two diabetes blogs to watch this year. So I'll link that up as well if you haven't checked her out. She's a longtime advocate and blogger in the diabetes community. Thanks for sharing that.

And just a little good news from Carol Who says I discovered the secret to five sites use six millimeter cannula instead of nine millimeter, whatever works. The thigh site is one that Benny has struggled with. He just does not like it. He's done it here and there over the years. And you know, it's just not his favorite. So Carol, I'm really glad that that worked. You know, we used a longer canula for a while and if you're not familiar for not a pumper. So the canula is how the pump gets the insulin infuses the insulin under the skin, you have usually an inserter of some kind, it puts a needle under the skin immediately withdraws and leaves a tiny canula six millimeter or nine millimeter under the skin where the insulin drips through when Benny was 10 or 11. And we kind of noticed his insulin use going way up. We didn't really think about the cannulas and the insets being overwhelmed. We thought well, maybe we just need to use a longer inset maybe it's a problem with scar tissue. And we switched to the nine millimeter for a couple of months. It made zero difference for him. It was one of the things that led us to untethered, which if you're new to the show, we used a combination of long acting and pumping for two years when Benny's insulin needs went way, way, way up. And it took a lot of the strain off the inset. It helped him measurably it was just wonderful. His insulin needs have gone down. He is 16. He is coming out of puberty. And so we are off untethered. But I didn't mean to be under there, Carol. Sorry. Thank you so much for sending that in.

And I'll add something good in that Benny has started back with wrestling practice. Now this season is going to nothing like any season in the past. I'm not sure they'll ever even actually wrestle for the rest of this school year. But we're back practicing. They are either indoors with masks, I think when they're outdoors, they're wearing masks depending on where they are and how close they are together. But he is really psyched to be back with the wrestling team and working hard. And he's really been working hard all this year. And I'm really proud of him. I don't like to say too much. I'm very superstitious. I'm knocking on wood even as I'm talking, which is why I don't brag about him more. But isn't that ridiculous, but I am superstitious, but he is doing well. And it's cool to have the wrestling practices back again. So that's my Tell me something good. Please feel free to email me with your good news or post in the Facebook group when I ask and just tell me something good.

 

One of the conversations we had in the Facebook group recently was about predictions for the new year. And I meant to give mine during the last episode, I want to put this on tape so you can laugh at me. We can play it back next year and see if I cut anything right. So here were my predictions. And this was about diabetes technology. I'll go big. I think we're gonna get Tandem bolus by phone approved that has been submitted according to investor calls, I think we're gonna get that approved and rolled out by third quarter of 2021. I think we're gonna get Dexcom g7 approval and rolled out by the third quarter of 2021 as well, that one I don't think has been submitted yet. So that one might be a little bit more hopeful. But come on. I do also think no direct to watch. Sorry, for g7 I still think you'd have to use a phone. But I do predict that the DIY crowd will find a way to crack it. And you'll be able to go direct from the g7 transmitter to a watch. That's very, very helpful. And it's also set up with zero knowledge about what it would take to do something like that. Love you guys. I have no idea. I think you're all geniuses. I think we're gonna get Omni pod five powered by horizon. Not until the fourth quarter. I think they're just a little bit behind only because I mean COVID delayed everything and my understanding is that have not submitted yet. Omni pod folks, you are more than welcome to come on the show. I'd love to get an update about that. Let me know. And I do think we'll also see another viable CGM competitor ready for submission to US FDA by the end of the year by the end of 2020. I think it will be submitted.

 

So those are my technology predictions. I think, as I've said, really, in this episode in many in the past, I think this is going to be a big year for conversation and education about insulin pricing, not just because the democrats are in charge in DC because let's face it, they didn't do anything last time around about insulin pricing, but I am very encouraged by the education and the advocacy. Frankly, the impatience among many people I'm seeing now, I think it is going to be different than last time around. Look, don't misunderstand my comment. Nobody said anything about insulin pricing for 30 years under any administration, it has nothing to do with party. It hasn't so far, maybe we'll see federal action. But I do think that the state legislators are going to make the big difference here. I refuse to make any personal predictions. I'm hoping that I continue to let Benny become more independent. I hope that he continues to put up with my digital list. Are you okay? Do you need to think Can I help you for at least a little while longer. He's a sophomore in high school. So I've got him here for a couple of more years.

And I predict that the podcast will stay a place for me to serve you. It is really a privilege to do this. I hope we continue to grow at the pace we are I love reaching more people. But bottom line, this is still the most rewarding project of my professional career. I've been in broadcasting a very long time, longer than I'd like to admit sometimes. And this is it. For me. This is the big deal and the one that has made just an enormous difference for me personally. So thanks for that. Got any predictions? We already have a thread going in Diabetes Connections the group I'll bump it up when this conversation goes live. Thank you, as always to my editor John Bukenas from audio editing solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week.

 

Benny  56:25

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Jan 5, 2021

For the first time in several years, a new pump company is making a reach into the US market. Meet Ypsomed, the Swiss company teaming up with Lilly Diabetes. Their device, The YpsoPump, is available in Europe and Canada and has some unique features. But when it launches in the US, likely in 2022, it will only use Lilly insulin. That kind of proprietary design is unique and is raising eyebrows. Stacey talks to Simon Michel, Ypsomed's CEO (she'll talk to Lilly in a separate interview airing in a few weeks).

In Innovations this week, what is an inverse diabetes vaccine? And could you be part of a trial for one?

Learn more about City of Hope's Inverse Vaccine trial here 

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcription:

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario Health, manage your blood glucose levels increase your possibilities by Gvoke HypoPen, the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:28

This week, my first interview with Ypsomed, the Swiss company teaming up with Lilly diabetes to bring a new pump to the US. A few features make YpsoPump unique, including their infusion sets which can help to cut back on insulin waste.

 

Simon Michel  0:43

Yes  it's terrible. It's throw away so much insulin all the time. But you can disconnect Of course from your body, you change a cartridge, you put it back on. And that's how you don't lose your insulin in the tube.

 

Stacey Simms  0:54

That's Ypsomed CEO Simon Michel, we talked about more features and he answers questions about the partnership with Lilly in innovations. What is an inverse diabetes vaccine? And could you be part of a trial for one This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

 

Welcome to our first full episode of 2021 Happy New Year. I'm so glad to have you here. Here we go. Another year of the podcast. My goodness, I'm your host, Stacey Simms. And as always, my goal here remains the same. We aim to educate and inspire about diabetes, with a focus on people who use insulin. any of that line sounds a little bit different if you're used to my intro where I talk exclusively about type one. But you know, more and more people with other types of diabetes are listening as the show is growing. And I think that's really important to acknowledge and to kind of dial back and see who we're serving here.

My son was diagnosed with Type 1 14 years ago, my husband lives with type two diabetes, I do not have any type of diabetes. I'm the broadcaster in the family. This year on the show, I'm going to be focusing a lot on new technology, I think the delays that we saw in 2020, because of COVID are going to result in a lot more news than was originally planned or expected for 2021. You know, a lot of that innovation, a lot of those FDA submissions and approvals are getting stacked up, especially as we're looking at the second half of 2021 and into 2022. So you know, why not get ready. And you all have told me that you are very interested in episodes about technology.

In this episode, we're gonna learn all about Ypsomed and their plans for the US market. I have an interview scheduled with their US partners, Lilly diabetes, to talk more in depth about the proprietary nature of this pump. You can only use Lilly insulin in it in the United States. That's interesting. We talk about that here in the interview. And then there are a bunch of questions that Ypsomed, really cannot answer that are more for Lilly. So I'm excited. I'll be talking to them soon.

And just in the technology front, you're going to hear from the folks from Tandem. I've got a Medtronic interview, I'm excited to share with you. And as we look forward, of course, I will still be doing the personal stories interviews because I love those too. But please let me know if there are companies that you would like to hear from this year, and we will get them on and yes, Big Foot beta bionics. I'll be talking to everybody.

Okay, Ypsomed in just a moment. But first Diabetes Connections has a new sponsor this year. Yes, I am so happy to welcome our newest partner Dario, I cannot wait to tell you all about them. You know, we first noticed Dario a couple of years ago at a conference and Benny thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gives you all the supplies and support you need to succeed. You get a glucometer that fits in your pocket, unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it and personalized reports. Based on your activity. Find out more go to my daario.com forward slash Diabetes Connections.

My guest this week is the CEO of Ypsomed. And if someone is a leading maker and developer of injection and infusion systems, pumps and pens around the world, and not just for diabetes, as you'll hear, they've been in the space for a very long time. But we're talking to them because I know I have listeners around the world and I appreciate you all so much and many of you may have experienced with this pump, but we are us centric and Ypsomed announced that it is partnering with Lilly diabetes to bring their pump to the US market.

That announcement raised some eyebrows when it came out this fall because it will be the first pump in the US that will only be used With one type of insulin that can only be used with one type of insulin, and the US market is the only place where that will happen, this pump will be available in other countries that already is with different types of insulin. In other words, to be clear, you'll only be able to use Lilly insulin, such as human log in the US, if so, mid pump. Now, Ypsomed has been around for a long time before this, of course, many of you who've been in the space for a long time will recognize some of the technology names and the brands that come up here. I was really excited to talk to the CEO, of Ypsomed Simon Michel, for the very first time, he's been the CEO since 2014, at the company since 2006. And as you'll hear, he kind of grew up in the company. And here's our conversation.

Thank you so much for spending some time with me. I'm excited to have you on the show and learn more about this. Thanks for being here.

 

Simon Michel  5:53

Thank you, Stacey. I'm to give us a chance to talk and explain to what we're doing. Yeah.

 

Stacey Simms  5:58

So let's just start with the basics if you could tell me about Ypsomed because we're really not that familiar with it here in the US. So if you wouldn't mind taking me through. Let's start with the the company history before we talk about the product because you are not a new company. You've been around for a while.

 

Simon Michel  6:14

Yes, I'd love to Absolutely. Thank you. So my father in 1985. Around the time when MiniMed founded the first company, the first pump in in Europe Disetronic. Some of you might still remember the name. And we were quite a successful pump company. And we sold the pump company at the Disetronic to Rouche in 2003, Rouche is still a name in Europe, roughly 80,000 patients on the product. But as they didn't really innovate anymore, we decided to go back into pumping in 2010.

 

Stacey Simms  6:44

When you went back into the pump business, what was the product at the time.

 

Simon Michel  6:48

So we did two things in 2010, we signed with Insulet. We took over the DC distribution of the Omnipod in Europe. So basically build up the business for for Insulet. between 2010 and 2017. When we've given it back to them, and the parallel we have started to develop our own YpsoPump so in back into tubed pumping and thought what can we do better? What can we do better in terms of pumps? What is the community needing tomorrow? versus the old Disetronic pumps, what can we do better?

 

Stacey Simms  7:17

What did you find that you could do better? We're going to talk about what the pump looks like and what it does, but big picture.

 

Simon Michel  7:24

So when we look at Ypsomed today for a whole, we make roughly 400 million in revenue, we grow at roughly 15% per year. So quite a healthy company despite of COVID we still grow and we have two businesses and it's quite important to understand we do both pumps and pens. today. I'd say you're by far largest pen and auto injector manufacturers in the world. We close roughly seven out of 10 deals in the pen space that's pens for insulins, solostar pen some of you might know it's also many of the Chinese pens, pens all over the world but all the injectors for autoimmune diseases migraine Astham, osteoporosis, So this is our device business. And the other half of our company the other 12 million is where we are very invest in pen needles in blood glucose monitoring and heat pump systems. And this we sell in Europe very successfully now for the past years in Europe and our own brand was owned subsidiaries and own people.

 

Stacey Simms  8:20

I'd like to know more about maybe we'll talk more about the pens a little bit later on. But when you started talking about the pumps and the systems that you started making in the 2000s I'd love to get back to what was lacking in the pump market. What did you think needed to change that you could do differently and better.

 

Simon Michel  8:37

So a couple of things you know, I mean to the pump was very much medical device centric. It's a very strong technic focus site is designed by engineers, great engineers from America from Switzerland from Germany, great people that think about what features we can add. But in the end of the day, we use these devices daily we don't really want to know and hear and feel and about this device. So number one criteria for us was to make it small and light. Ypsopump is roughly 80 grams. I don't know what this is in American weight measures but it's a it's a roughly half the weight of a Medtronic pump. I mean that gives you some kind of feeling very important, you wear it all day. The other thing is simplicity. We don't need all those features. I mean if you look at the at the iPhone, some of these phones they have many features but they only show the features that you actually use. So really simple in a way what is really required you don't need eight basal menus, you need two or three. Some might use but the big, big majority of us don't need this vast opportunities.

 

Stacey Simms  9:38

When I look at the the pump that we're talking about today. It does look tiny, it does look light and I did the I had to convert as well using my iPhone and that weight that 80 gram weight is point .176 pounds so very, very, very light. It looks like it's smaller, it looks like obviously it's lighter and doesn't have a touchscreen. It Looking at his buttons?

 

Simon Michel  10:01

Yes, absolutely. So it has a touchscreen. It's used like your mobile phone, you have one button to turn it on and off. That's basically it. But other than that you have a regular touchscreen, which works at night perfectly.

 

Stacey Simms  10:13

It's basically white on black. So it's a very good contrast that you see, is the pump controlled by phone? Is it controlled remotely? Or is it still used as the touchscreen?

 

Simon Michel  10:22

So yes, very important. We are a compared to other manufacturers, we are a iPhone app centric company. So you everything you do we do from your phone. So you have your Dexcom data on your phone, you give your bolus from your phone, you do your basal rates from your phone, that's that's our strategy, we have the firmware updates that go via phone onto the pump and back. It's very much app centric. The reason is we can be much, much faster and adding elements and adding new functions, new features, you don't need to change the device, you know, you don't want to change device or every year, simply too costly. This is why we set it up that way.

 

Stacey Simms  10:59

So that's a huge deal. Because here in the States we're all waiting for, you know bolus by phone, we're waiting for pump control which Tandem and maybe Omni pod will have and hopefully 2021. But just to be clear, you have that already.

 

Simon Michel  11:12

So we have the apps and the whole app control features are now launched in q1 in all over Europe. Yes. All the other things integrate the integration. The data this is this is in place the apps is in the market. But the integration of this bolus button and the CGM together is Dexcom is launched now in the beginning of ‘21, q1.

 

Stacey Simms  11:32

But let's talk I brought up the United States market. Let's talk about this partnership with Lilly, what is that partnership going to look like? And we can talk about consumers in a moment. But what will that partnership look like? For you all? Tell me about the system? What will the Lilly IP so mad Dexcom system look like when you bring it to the States?

 

Simon Michel  11:52

Well, basically, for my relationship, it's simple Ypsomed innovates and be manufacturer really supports in innovation and does the marketing and sales it was for us crystal clear from the beginning Ypsomed is a European company, it would be very tough for us to enter the big US market. So if you're looking for a partner, and luckily Lilly was looking for a pump, so we found each other a year ago Ypsomed would be the is the comet actually registered a product to the FDA, the expected approval in the second half of 22. But it's a fully branded Ace pump. So Dexcom is integrated as a bolus calculator calculator, the remote bolus  function as a Type Zero controller that will follow by mid 23. And it is a Lilly product from a user perspective, but it's manufactured in Switzerland.

 

Stacey Simms  12:35

It's so interesting to hear you say these things that a few years ago would have been very foreign to us. I think my audience is familiar now the ACE designation, Type Zero, which is the software that's inside. It's incredible, just to take a moment and think how far things have come

 

Simon Michel  12:52

across fast pretty fast. Yes,

 

Stacey Simms  12:53

goodness. But to be clear, Type Zero is the I would call that a hybrid closed loop software. So that's the software that will in very plain terms, work with the Dexcom to increase insulin or decrease insulin to try to keep people more in range. I just want to be crystal clear about that.

 

Simon Michel  13:11

None of those days. Absolutely. I mean, I mean, Type Zero belongs to Dexcom. And of course Type Zero is further working on on new versions of the controller. It's a constant enhancement. At the moment, the features that you described are the ones it's the low suspend function. It's the hybrid adaptation of the baseline rate. There's the micro bolus element, there are a couple of features which have one goal to bring us to bring patients with type 1 diabetes in in time and range

 

Stacey Simms  13:35

the ACE  designation, and I get a little confused on this. So I apologize in advance. That's all about interoperability. Right That's about making these new technologies compatible with other devices.

 

Right back to our conversation, but first Diabetes Connections is brought to you by Gvoke HypoPen, and almost everyone who takes insulin has experienced a low blood sugar that can be scary. A very low blood sugar is really scary. That's what Gvoke HypoPen comes in Gvoke HypoPen is the first autoinjector to treat very low blood sugar Gvoke HypoPen is pre mixed and ready to go with no visible needle means it's easy to use. How easy is it, you pull off the red cap, push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke HypoPen logo. g book shouldn't be used in patients with pheochromocytoma or insulinoma visit gvokeglucagon.com slash risk.

Now back to Simon talking about interoperability and the East controller.

 

Simon Michel  14:40

Well, I mean, the great thing is that it's much easier to add different devices or different controllers to it. Once you have the ACE type designation you can actually change or upgrade a controller as it only is doing a lot of research on on controllers. So think about the might use their own controller in the future. Together with their new insolence. You can Think about situations where you can do better therapy better time and range when you combine new insulins with new controllers to actually use the insulin data to make better controllers. And also on the sensor side, it's possible that other sensors would come to the system at the moment, we love our partnership with Dexcom. It's great. It's really works perfect. But it's just it just shows an openness, that it's basically easy to add something else.

 

Stacey Simms  15:22

I have another question you may not be able to answer. I will be talking to Lilly about this. And it's really a question about them. I was at Lilly's headquarters in Cambridge, the headquarters for this project a couple of years ago, where they showed us their pump prototype because at the time they were working on building their own hardware. And obviously that project, I don't know if it's put aside I'll ask them about that. But this is not that pump. Correct. This is not the the pump that Lilly developed their partnership with you is using your hardware? If so meds pump, not this Lilly, it was a little circle disk pump that they showed us at the time.

 

Simon Michel  15:56

Yes. If the pump is purely manufactured by IP summit, it is the product designed here in Switzerland, that will be the pump that Lilly will use. You're absolutely right, Lilly was working on our own pump program, patch pump type program for many, many years. But you have to ask them they recently paid to our knowledge, they recently recently stopped the project, and are now fully focusing on our joint partnership to bring a cement Lilly pump to US patients.

 

Stacey Simms  16:25

I appreciate you answering that. I know that's more of a question for Lilly, and we'll talk to them about that for sure. But you know, insulin affordability is a huge issue in the United States. And we are we are struggling with that and a lot of our health care system right now. But making a pump that only uses one type of insulin is going to limit options. And I gotta be honest with you, I think people are, it's it may not be seen as a very popular feature. You know, we have insurance issues in the United States. I just went through this with my son, where we'd been on one insulin for many years. And then my insurance company said, No, you you have to use this other insulin. And that can happen here. Are you concerned about that at

 

Simon Michel  17:02

all, this will happen, of course, but it is ultimately beneficial for a health care system. And I can make the comparison with mobile phones. So if you have a mobile subscription, and you have your fixed lens subscription or internet subscription, you get a better deal. Now, this approach is to really bundle all these elements, and it will ultimately very much be much better beneficial for people with diabetes, it will be better for the healthcare system as of lower cost. So it's definitely not increasing the cost. Yes, it is increasing, its increasing to some extent, your choice of insulin, whether it's a short acting insulin for novel from Lilly, I fully agree but it will lower costs for healthcare system because of the bundle approach. It's a really innovative partnership. Where is the entity manufacturer really decides to go the full way the first time in history? And this will be beneficial for us us healthcare system for sure.

 

Stacey Simms  17:49

That's really interesting. So they'll have to work with insurance companies to say if you cover this pump, you must cover this insulin. Again. Again, I have to talk to Lilly but I would imagine Yes,

 

Simon Michel  17:59

well, of course that's a fair question. But I mean really wouldn't invest so much in a partnership if they wouldn't want to sell their core asset which is their insulin and in a prefilled cartridge, it will work with our pump. So it is the way this relationship is built up. But again, for Americans and for the healthcare system, I personally only see benefits in the end of the day in terms of cost.

 

Stacey Simms  18:23

That prefilled cartridge is something that is not currently available on any pump system in the US It was here for a while with some older pumps that are not on the market anymore.

 

Simon Michel  18:33

Well it was our pump Yes, it was the Disetronic pump with the three ml humalog cartridge was available in America between I would say 1998 and 2004 ish before Rouche stopped it, it will come back but it will come back in 1.6 format in a shorter version. We basically have this in the market already in Europe together with Novo Nordisk . So there's a novel called pump cart that works with our pump that's available in the market now since 2017. And is going the same way now this is a huge benefit to work with prefilled you don't have to fiddle around and fill your cartridges you could just take it out of a fridge make it a bit warm, put it into pump and that's a huge benefit.

 

Stacey Simms  19:12

It was very popular I think I want to say the Asante snap pump also had it for a while and that's the one that I look at because

 

Simon Michel  19:20

yeah your idea right it wasn't it wasn't this one was not a market so it was not so successful. This pump You're right. I mean the issue was with the D Tron pump, it was a bit too big, you know, it's three ml cartridge, the 1.6 is shorter. That's how we can build such a small pump. And the good thing about a pump is with our infusion set, you can actually keep the tube on. So you can change the cartridge you can keep the tube on you don't have to throw away the insulin which is in your tool because you can change the cartridge. Keep the cube you're using and you don't lose insulin.

 

Stacey Simms  19:49

Okay, I have many questions. Wait, let's go through those all at once. And I will get to the keeping the inset on but staying with the cartridge for a moment. So that's 160 units In the cartridge and you said take it out of the fridge, pop it in the pump, is it good in the refrigerator for a long time, because right now if people kind of pre fill when they're not supposed to the cartridges that are available on the market will start to break down. I'm assuming that's not the case.

 

Simon Michel  20:15

Well, it's, as we are used with pens a single expired expired date of two to three years. It depends on market by market, but you can keep it as your pen,

 

Stacey Simms  20:23

I was thinking two to three weeks for a filled cartridge right now, we're not supposed to do that with the Tandem or the Medtronic pump.

 

Simon Michel  20:30

It's a prefilled closed system as we are used with prefilled three ml cartridge. Some of you may use a reusable durable pen. Of course there you need regular in Europe, quite a lot of people use durable pens. And now it's Medtronic coming this Companion, you will see more and more durable pens in America as well. This smart pen trend will definitely lead to more cartridge based pens where you exchange the cartridge. So it's a standard closed cartridge system. You can keep it for two or three years in the fridge.

 

Stacey Simms  20:57

So talk to me about keeping the inset on. When you're changing out the cartridge. You're not priming the tubing, you're not doing things like that,

 

Simon Michel  21:05

yes, we built in a valve in a way that you can take the connector off the pump, you exchange the cartridge, you put the connector back on the pump, and there's no air coming into the tube to kick can continue to pump Of course you would disconnect it, you orbit set has a nice feature disconnect at the head. It has a 360 degree rotation feature. So it never cranks. But you can disconnect Of course from your body. You change a cartridge, you put it back on. And that's how you don't lose your insulin in the tube.

 

Stacey Simms  21:35

That's wonderful people you know, it's very difficult when you're losing units upon units when your primary

 

Simon Michel  21:41

yes and no, it's terrible. You throw away so much insulin all the time. So you can use this tool for seven days. So two or three cartridges. Of course it depends. If you if you need more insulin, you use it for two or three colleges if you use less insulin, use it for so it's just I think seven days is what is what makes sense.

 

Stacey Simms  21:59

Tell me a little bit more about that inset because I I've said for years and years that insects are the weak link of pumping, they leak. They don't work so well. You mentioned it rotates. Talk to me about your inset

 

Simon Michel  22:10

is a fully agree it's definitely the space where part manufacturers have to spend much more effort in innovation. Our infusion set is today a three day infusion set we work on a five and seven day version to just keep it longer on it's also regulatory work that has to be done here. It has a skin color. plaster so it doesn't show so much if you wear it. When you're at the beach. It has a 360 degree rotation at the head. So it really doesn't crink that's quite nice. It pops up clicks very nicely. You can click it behind your back without looking at, you hear it and it's safe and close. It has a Blue tube so it doesn't show so much on black clothing. A couple of nice features.

 

Stacey Simms  22:52

Is the skin tone one skin tone?

 

Simon Michel  22:55

It is a I would say it's a as neutral as possible one skin tone. Yes. I mean, it's better than white. You know, I think White is really shiny like we are used from other part manufacturers. It's just a more neutral skin tone.

 

Stacey Simms  23:08

Yeah, I know. You know what I'm asking though? I mean, is a Caucasian. Is it more peach than brown?

 

Simon Michel  23:14

Yes, yes. Yes. Yes, it is.

 

Stacey Simms  23:17

All right. Well, your first feedback is you have to work on that for especially for the US market and other markets. So I'll give you that piece of feedback.

 

Simon Michel  23:23

But input Thank you. No, you're absolutely right. It's a very good remark. I think I guess we are not so much used. From a diversity perspective over here in Western Europe. I think it's a very, very important remark you're making. And I definitely think it's possible to do that. I think it's a great idea.

 

Stacey Simms  23:38

That would be wonderful. Because, you know, I chuckled as I said it, but I appreciate you taking it seriously. It's difficult to talk about these things. And I find myself sometimes I shouldn't have left, they're trying to defuse the situation a little bit. But we are a very large and diverse country over here. And we have lots of

 

Simon Michel  23:55

love. No, no, no, I fully agree. And they beat this doesn't stop bad skin color. I think it's a great idea. And I don't see a reason why we should innovate on that to something we have never seen over here. It's not a topic that we get from customer feedback over here in Europe, but it's a great input. Thank you.

 

Stacey Simms  24:10

I appreciate you taking it that way. So let's talk about the pens for a moment because we tend to focus on this show a lot about pumps. But at the same time, you have already mentioned so many interesting things about pens. Do you plan to bring you mentioned smart pens, you've talked about the different types of pens that Ypsomed makes already outside of diabetes? Is any of that available in the US market or do you plan to bring it here,

 

Simon Michel  24:34

so from the insulin pens today, only the Solostar pen from Sanofi is on the market. It's a disposable pen. Also the to chill pen so the for the other type of Sanofi insulin. Other than that we are at the moment in discussion with several parties. For our smart pen. We have a smart pen for a 1.6 ml version and a three ml version, which connects to the app and the cloud. Of course, you have all the benefits of a smart pen you can use the CGM data including all the injection data which we really need. I mean, you need both sides, you need to be GMC champ data as well as the injection data when you have injected IV correctly. In fact, we have a lot of nice features on the pen tells you if it's styled correctly or not. There's a lie. It shows your holding time. How long enough to hold on many nice features you can do with smart pens today.

 

Simon Michel  25:21

Yeah, because a lot of people don't still want pumps attached to them. And a pen is a real option

 

Simon Michel  25:26

Yeah, absolutely. I mean, worldwide, we have 50 million people that take shots every day, but only 1.5 million user pump. So I think a lot of the vast majority uses pens, so it definitely have to innovate more in that space. And I'm so happy now that Medtronic decided to do to make that step to make that move, and also Novo Nordisk making the move. Now Lilly will come with a solution and the space is now moving. And that's very important.

 

Stacey Simms  25:51

It's okay, if you can't answer this, but can you give us an idea of what an Ypsomed smart insulin pen would do? I mean, we've The only frame of reference we have here in the States right now is companion medical, as you mentioned with Medtronic, could you give us an idea of what features might be available?

 

Simon Michel  26:07

Yes, absolutely. I mean, this pen is available in the analog version, so the non digital version in China for over 10 years, it's a very robust pen the piston drop, push back with your finger, it has a bayonet coupling for the cartridge. It has a spring driven support for injection. So it don't need to force if you have, or if you're old or don't have strength anymore. You just put a button in checks with a spring support. Very nice feature, we have a large display, which works at night, you have a light that gives the signal whether your dial is correct or wrongly, it's red and green, it shows how long you have to check that it stops blinking when it's injected fully out of his holding time, I think is the old time is very important. You have its Bluetooth connection, of course to the app connects automatically, it stores everything on the pen and on the app.

So all the features that you are used from Companion are now in there, as a will be a great, great product that we are working on here. And hopefully be able to introduce to America, we will take two two and a half years to come. We have to go through registration program together and still need to make the decision what partner will be the one that will bring it to the market. You know,

 

Stacey Simms  27:14

I should have asked you right at the beginning. But I'm curious, do you have any kind of personal connection to diabetes?

 

Simon Michel  27:21

Well, not personally, not not nobody in our family has type 1 diabetes, we have a couple of uncles and aunts that are on insulin on type two. But you know, I spent my whole life with diabetes. I think when I was 10 years old, I was throwing the first insulin pump. I still have this picture somewhere I can check and send it to you. It was it was an H Tron pump. Remember 1987. So I was my whole life. I mean, we went to the factory pump factory with my father, when I was a boy, my brother and me We ran around. And so he was my whole life. And then I went to university and I started in telecom industry. And it was very clear for me that I will come back. So I'm in this in this industry now really, for almost two decades. But we don't have diabetes, but I'm very, very connected to it.

 

Stacey Simms  28:02

That's great. I would love to see that photo or anything that you might want to share for sure. So I guess that leads me to this question, which is what gets you excited. I mean, your family has been in this business for so long, you've seen it change, you're bringing something brand new to the United States in a couple of years. But what gets you out of bed every morning that you're still excited to work in this space.

 

Simon Michel  28:22

I believe we are extremely privileged here to be able to work on products and services that make life easier for people with diabetes. And this is our business for 30 years. It's a family business we are stock listed but the majority of the shares in our in our family. So we do have a large responsibility on it. It's just great to see we are 2000 people now here working every day tried to make better devices, better solutions for people with chronic diseases also outside of diabetes and it's it's a huge privilege and motivation to work on it.

 

Stacey Simms  28:53

Well I feel like I just scratched the surface starting to talk to you about the partnership with Lilly and the pump and the pens. So I hope I can circle back maybe next year and check in on the progress and and talk to you as you get closer to bringing this to the US.

 

Simon Michel  29:06

Yes, let's do that. That's right to give an update. Once we filed we tried to file in summer 21 we still sorority and they will definitely be a good time again to give you an update.

 

Stacey Simms  29:17

Wonderful. Thank you so much for your time. It was wonderful to talk to you and I'm so excited to learn more.

 

Simon Michel  29:22

It's a pleasure talking to you.

 

Simon Michel  29:29

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  29:34

So what do you think? I'll be posting in the Facebook group to get your questions for my upcoming interview with Lilly and that is Diabetes Connections the group Do you think it's possible that overall, this pump system will turn out to be less expensive as Simon thinks. I certainly hope so. But any kind of proprietary idea on a market that is already so limited just makes me nervous.

And I said this when I was at Cambridge a couple of years ago looking at their prototype for the pump that they're no longer developing, apparently, I think they got into this pump partnership, because they know the writing's on the wall for insulin price controls may be too strong a word, but limitations. I won't get into it too much here. But you know, we've had this conversation many times before, I think that there's going to be legislation at the state level, if not the federal level, to really change how insulin and other medications other treatments are priced. So we shall see.

And oh, my goodness, I hope our conversation about skin tone on the inset came off. Well, I mean, these things are awkward, as I said in the interview, but once he said skin colored, I mean, most of the inserts are just bright white. So once he said skin color, I had to ask, I had to follow up. I hope that came off. Okay. And look, we can seem to take it very seriously. So we shall see. Wouldn't that be nice if medical devices could be a little more discreet on the skin on any color skin tone?

Okay, up next, let's talk about an inverse vaccine for diabetes and explain what that is. But first Diabetes Connections is brought to you by Dexcom. Do you know about Dexcom clarity, it's their diabetes management software. And for a long time, I really did think this was just something our endo used. You can use it though on both desktop or as an app on your phone. And it is an easy way to keep track of the big picture. I try to check it no more than once a week. Although I'll be honest with you, there are times when I'm checking it every day, it really does help me and Benny dial back, I look for longer term trends. And I try not to overreact to what happened for just one day or you know one hour, the overlay reports help context to Benny's glucose levels and patterns. And then you share the reports with your care team, which makes appointments a lot more productive. managing diabetes is not easy. But I feel like we have one of the best CGM systems working for us find out more, go to Diabetes connections.com and click on the Dexcom logo.

 

In our Innovations segment, this week, I want to talk a little bit about something called an inverse vaccine. This is a City of Hope, phase one trial. And the City of Hope is an organization that is looking to try to find cures for type one, I will link up more information in the show notes about them. And we really should talk to them. I it's hard for me to believe we haven't had them on the show yet. So that's going on the list.

But basically, this would use someone's own immune cells, a beta cell protein, and vitamin d3 to potentially treat type one, I'm sure that is a very simplified explanation. But these inverse vaccines are trying to stop certain immune responses rather than activate them. When you think about a regular vaccine, right, like the flu shot are the COVID-19 vaccine that we talked about just last week, what they're doing is trying to stimulate the immune system, right, here's a germ learn how to fight it, go immune system, right, the inverse vaccine is, here's something coming in, don't do anything stand down. Again, this is a very simplified version of what they're trying to do. But they are recruiting, they can't start the actual trial, they say until the pandemic is under control a much more but they are recruiting and they are screening patients right now. So I'm going to put up a link in the show notes.

And as always, you can go to Diabetes connections.com. And look at the episode homepage. If you're listening on an app, a lot of them are great to listen to, but the show notes aren't so hot. So if you have any trouble, just head on over to the homepage. As usual. The trial I should say is open to adults with type one between the ages of 18 and 45. You have to have been diagnosed in the last one to four years. There's a lot more listing after that. And by the way, this is a follow up on a small study in the Netherlands where they they looked at safety. So you know if you get into this definitely keep us posted. I'd love to know more.

A couple of quick housekeeping things before I let you go this time around. I am taking part in a free summit at the end of this month. It is the fearless diabetic summit. And I will be posting more about that in the group. And on our website. This is a really interesting summit that is trying to answer the question, what would you tell yourself if you could go back to your first two weeks of diagnosis, and they talk to 30 different people in the diabetes space, you know, experts and educators and NGOs and athletes and I think I'm the only parent that they talk to. But it's a really interesting concept. And I'll talk more about that as the month goes on. I'll put a link in the show notes to the fearless diabetic summit.

Also, if you haven't seen it yet, I have a free ebook Diabetes Connections extra that I put out late last year and this is a set of transcriptions and they are proofed and they're beautifully laid out easy to read. They are the extra episodes that I did a little while ago all about the basics of diabetes management ketones. What is insulin? What are lows? How do you use a CGM to its best practice insulin pumps, all that kind of stuff. I think it's a really good read for newer diagnosed families and for you to give to people in your life that you would like to better explain diabetes to it is an email signup. But you know, I don't spam anybody, most of you are on the email list already. But if you want to send that out, I'll always put the link in the show notes to that as well. That is the free ebook.

And finally, I'm this close to announcing my new project. And it really doesn't have anything to do with diabetes. But if you're interested in podcasting, you'll want to sign up, I am going to be teaching a course this year, I'm teaching two courses actually, on podcast, monetization, get paid to podcast, I have been really interested in this subject, because I've helped a lot of people kind of behind the scenes for the last couple of years to do this, ethically to do this. Well to do it in a way that makes sense so that your listeners don't have to pay anything, but that if you want to spend enough time on your podcast to make it quality, you eventually are going to look at options like this. And you know, like diabetes, there's some snake oil in the space. There's some stuff out there. That's pretty questionable. And I want to help people do this with transparency with disclosures to do it right. So stay tuned for more than that. I will not be hammering you with this. You’re here for diabetes news, but I wanted to let you know, and I'm really excited about it.

Thank you so much to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Benny  36:32

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Jan 1, 2021

Let's start off 2021 with some hope! This week you'll hear from five health care providers who received a COVID vaccine in late December 2020. They all live with type 1 diabetes and share their experiences leading up to the vaccine and how they felt after getting it. These folks all got the first round of the Pfizer vaccine, which means they are all scheduled for another shot right around the time this episode goes live.

Back in September, Stacey interviewed a women with type 1 who is in the Moderna vaccine trial. Helene Cooper lives with type 1 diabetes and asthma. She has completed the vaccine part of the trial – two shots – and says she's had no bad reactions and no regrets.

This episode:

3:00 Danica, a diabetes educator

8:48 Dr. M, a pediatric endocrinologist

14:00 Michelle, an ICU nurse (who's breastfeeding)

18:40 Geoffrey, a hospital worker

22:30 Dr. Stephen Ponder, a pediatric endocrinologist who's lived with type 1 for 55 years.

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcription: 

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes available as a paperback ebook or audio book at amazon.com.

 

Announcer  0:19

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:25

Welcome, everybody. And Happy New Year, I am so glad to have you along for a little bit of a different and special episode of Diabetes Connections, I thought it would be a really nice way to start off this new year with some good news.

Look, we're far away from leaving 2020 and everything that happened behind right, there's a long way to go. But this is an opportunity to sort of turn the page and look ahead to brighter days, and give you some news and information and stories from people with type one, which as you know, is what I am all about. And if you don't know if you're new, Hey, welcome.

We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I am your host, Stacey Simms, and my son was diagnosed 14 years ago with type one right before he turned to my husband lives with type two diabetes. And I don't have diabetes, but I have a background in broadcasting. And that is how you get the podcast

in about mid December. late December. I noticed like a lot of you did I'm sure that people I knew were posting photos of themselves getting the COVID vaccine, right. These are healthcare workers. These are our front line in hospital, usually who are able to get the vaccine in the very first batches. And how exciting is that? And the photos were really hopeful and really gave me just, I don't know, a feeling I hadn't really had for most of 2020. So I wanted to talk to some of these people and find out more and get you some information as you live with type one or if people in your family do, what to expect what their reactions were.

So here is what we've got. For this episode, I spoke to five health care providers who all live with type one who received a COVID vaccine in late December 2020. These folks all got the Pfizer vaccine. That means they're all scheduled for another vaccine. There are two doses in the Pfizer protocol. And for most of them, that second vaccine is coming right around the time this episode goes live. There are four shorter interviews with a diabetes educator and endocrinologist registered nurse at a hospital worker. And those are more about personal experiences. And then there's a longer interview with Dr. Steven ponder who is likely a familiar name and a voice maybe to longtime listeners, Dr. Ponder goes a little bit more in depth with me about the vaccine and about staying safe with type one. As we head into this new year. He also talks about things you might want to think about and questions you might want to bring to your physician.

Please keep in mind that all of these folks were kind enough to share their personal experiences. They are not speaking for their hospital systems or workplaces and they are certainly not giving medical advice.

Okay, Up first is Danica, who you might know as Diabetic Danica, she has been on the show before she has big YouTube and Instagram following and she is now a diabetes educator. I started out asking her about her reaction, when she found out she be able to get the brand new vaccine.

 

Danica  3:21

Or at first we didn't think we would get it so soon because we knew the frontline people were going to get it first. So we work in the clinic but we're not like on the floor that treats COVID patients. We have COVID patients, we do it via telehealth like on an iPad video call. So we've got to do a little bit but the day after or hospital got it we got to get it to so I was really excited to kind of definitely was the most I've ever been excited to get a vaccine before. Just because there's been all this buildup and it's been such a hard year. And I don't know just overall just excitement, which is kind of weird when you're just getting a vaccine.

 

Stacey Simms  3:56

No, I think we're all feel very hopeful, right? I mean, we all kind of started hearing about it and think I can't wait. So it just explained this is the the shot where you need two shots where you'd be going back for the second.

 

Danica  4:07

Yeah, so it's a two shot one. But it's nice because they have you schedule it while you're waiting afterwards. Because just to be safe. Since it's a newer vaccine, they want you to wait 15 minutes after to make sure you don't have like an allergic reaction. So while we're sitting there, they had us just schedule our next one. So I already have it scheduled. And I'll just go in and get it just something. I honestly was a little nervous after I got it. I was excited. But I was like, Well, what if I do have a reaction? You know, because that's what everyone's worried about. I feel like and that's the majority of the questions I got afterwards was How are you feeling? Was that effective you had I think everyone's really worried about that but I felt fine. I the only side effect I had or symptom, wherever you want to call it was my arm was sore, just like the muscles in it. But that happens to me when I get my flu shot. So it wasn't super alarming to me. I'd say the arm soreness was worse for me than with a flu shot but the actual poke it didn't even feel so like when I got the shot. There was absolutely no pain for me. And then later, I just got sore for about a day like probably 24 hours. I didn't notice any changes in blood sugar, it seems like just run of the mill for me. I don't think it affected anything there.

 

Stacey Simms  5:14

What has it been like for you in the clinic? Can you talk about your routine and how you stayed safe?

 

Danica  5:18

Yeah, you know, it was it was really stressful at first because things were changing. And it was very and so like, every day, I felt like we were getting multiple emails about new protocols and things we had to do. Now it's more routine, which is helpful. You know, we wear masks and eye protection. And we really thoroughly wipe down high touch areas, they call it in our patient rooms, the doorknobs and the chairs and the keyboards and everything, this stuff that kills the virus. And I guess I thought it was I don't know, if anything major has changed. I mean, other than me looking at the numbers every day to see how they're going up or down and making sure I'm on top kind of what's new with the virus, just in case patients ask. But I thought it was a lot more stressful at first, like we're getting super used to wearing masks in the room, but I'm still looking forward to the day when I don't have to because it's kind of hard to talk to someone for an hour with a mask and everything covering your face. You know,

 

Stacey Simms  6:10

how has this year been for you? I mean, you've been able to go to work, which I think is probably has been very helpful. But what has it been like, you know, how are you holding up? I guess is what I'm asking.

 

Danica  6:20

Yeah, it was it was harder for us, like I mentioned, just work stress, that kind of thing. My day to day work, life hasn't changed a whole lot other than the extra precautions. And initially, we were shut down in my state. So I, I couldn't see my family and I was spending a lot of time at home. So mostly on weekends, I would notice it the most where I'm like, I'm not doing anything fun. And then it opened back up. And so with precautions, we could go out and do things. I feel like I'm hiking a lot more this year for the outdoors and distance and just beautiful one so fun to do. But in my personal life, it's actually been a great year, it is so funny to say to say overall, it's been such a crazy year, but my parents moved to the same town I live in which I'm super excited about. I became an aunt this year, and my little niece was born. And I started seeing my boyfriend as well. So just a lot of like personal life things that have been really exciting for me. So it's been kind of nice to have those as a happy distraction in the midst of the

 

Unknown Speaker  7:13

craziness.

 

Stacey Simms  7:14

I'm so glad to hear that. It's great to talk about good news. That's wonderful.

 

Danica  7:18

I know. Yeah, there's always something good. And all the bad.

 

Stacey Simms  7:22

I wonder to the people who are giving the other health care workers the vaccine, were they very Matter of fact about it. Were they excited? I imagine there was more words in your mouth. It's like there be more joy than there hasn't been for a while.

 

Danica  7:37

I thought it was exciting. Yeah. Anyone the person one of the people who checked me in and someone I worked with in the diabetes clinic today, she's a nurse practitioner. So we were just catching up to and talking about that. We were excited about it. She hadn't got her vaccine yet. So she was looking forward to getting it most people working there hadn't gotten it yet, you know, because they're just volunteering, I assume to to kind of help out with it. So it was a cool process to be a part of. She ended up getting it low later that night, because they had two extras, and they were already out of the freezer. So they had to give them so Wow, that was kind of fun to hear about later, too. But yeah, I think overall compared to me getting my flu shot, it was a much more exciting thing. And you could tell it was a little new just because they they couldn't remember all the questions they had to ask me they had to look at their little cheat sheet, which is totally fine. And you could just tell she's like, I gotta do this a couple more times to be able to drink it. But it was like a teamwork. And yeah, they were doing a really good job.

 

Stacey Simms  8:29

My next interview is with Dr. Jacob masse check. He's a pediatric endocrinologist who was diagnosed with type one as a teenager. He's been in and out of the hospital this whole year and his clinic as well. And he goes home to his family, which includes two children. So he was thrilled to hear that the vaccine was available through his hospital.

 

Dr. M  8:48

I feel excited about it as well. I think this is, you know, the light at the end of the tunnel. So I'm thrilled that we have vaccines. I know

 

Stacey Simms  8:57

you work in an office that probably more than most has had so many questions about COVID because you treat kids with type 1 diabetes yourself live with type one, what was your reaction when you found that you'd be among the first

 

Dr. M  9:10

I'm very excited to receive the vaccine, we get regular updates on vaccines and get a sneak peek into how these vaccines are developed and how they work. And I actually think that this vaccine will be very similar and will work in a very similar fashion to the way that the flu vaccines work. So I think it's a safe vaccine. And I'm excited that it's going to be available for most of us very, very soon.

 

Stacey Simms  9:38

It's going to be interesting for you to balance being a healthcare provider. You know, you want a vaccine because you see patients you're in a hospital system, but you also live with type one, any more thoughts kind of for yourself in your protection or all about your patience or a little bit of both?

 

Dr. M  9:53

Well, being a type one, I am at a greater risk for having poor outcomes. If I worked To catch COVID and develop severe symptoms, so that thought is always in the back of my mind, being able to get the vaccine will put me at, I guess at a more comfortable level, seeing patients every day, knowing that I, I am protected. And knowing that I'm also less likely to develop it not only because of my risk, but also the risk of my family members that I love.

 

Stacey Simms  10:26

I imagine that most of the people that you see, I'm making an assumption here, but you know, your pediatric endocrinologist, most of the kids are not eligible, certainly this first wave of the vaccine coming out. But you some of your patients will be some of your older kids and maybe some young adults that you see, what are you telling them? When they're asking, should I take the vaccine? Is it safe? What do you know? What are you advising patients?

 

Dr. M  10:48

My understanding, and I am not an infectious disease expert. But from the kind of peek behind the curtain that we have received as physicians is that I think it will be a safe vaccine, it will work very similarly to the flu vaccination. So I think it's safe, sort of advise my patients to follow the restrictions on their, you know, local scale or state scale. But don't rush out of restrictions are lifted, wait and see what happens wait on the sideline, ever restrictions get lifted, or bans get lifted, we kind of have to think that we are, you know, at a higher risk. And it's better to wait and see what happens instead of rushing out if things open back up. So that's been my advice from the very getgo is, don't be a trendsetter when, when restrictions get listed,

 

Stacey Simms  11:45

when I look at the pictures of health care providers getting vaccinated right now, it has surprised me how excited I am, was that your reaction to tell me a little bit about your you know, the emotion of it.

 

Dr. M  11:59

I think having vaccines that are FDA approved, and that the FDA feels are safe, I think is a wonderful step towards seeing the light at the end of this tunnel. I think it gives us hope that we will soon be able to put this horrible year in the past and move towards a more normal life. I'm very excited about it. I'm thrilled. I think it's everybody's stress level will go down as we see that these vaccines are safe and are working. And we see that trends will start going in a positive direction. By positive I mean fewer numbers of patients testing positive and having complications. I feel great about it.

 

Stacey Simms  12:46

I know you're not like an operating room all day. But I imagine when you come home from work, you've got to take a lot of precautions to

 

Dr. M  12:51

absolutely make sure that I changed my clothing I wash up before I give them a hug. And that is something that I do. And I've been very fortunate knock on wood that I've stayed healthy during this entire ordeal.

 

Stacey Simms  13:06

I've talked to a couple of health care providers who have similar stories of you know, changing outside and doing this for so many months. I can't imagine how great that's going to feel the day that you can be like, come on, I can hug you I'm home.

 

Dr. M  13:18

I think we all look forward to that day. There's a lot of things that we look forward to and you know, this year has been very trying but it also made us appreciate kind of the silver linings in a lot of things. And it's been a reset for a lot of things. So I think we'll come out of this ordeal being stronger and having a greater appreciation for things that we may have overlooked in the past.

 

Stacey Simms  13:43

You will next hear from Michelle, she's a registered nurse and she has spent this year working with COVID patients. She has two small children. And as you'll hear, she's breastfeeding which was something she gave a lot of thought to before she decided to get the vaccine. I asked her to kind of describe of what's going on with her day to day.

 

Michelle  14:02

I'm I'm busy. a mom of three year old and a 10 month old. I'm a wife.

 

Unknown Speaker  14:10

I'm a registered nurse,

 

Michelle  14:11

I work taking care of COVID patients. Normally I work in the ICU and like on a telemetry unit. And then I'm also in grad school pursuing family nurse practitioner. So I have a lot going on.

 

Stacey Simms  14:24

Yeah, what is this year been like just with COVID patients? Well, we

 

Michelle  14:27

we prepared in March for this huge surge because we're in Pennsylvania and New York's right next door, and it didn't come. But our surge is now like our inpatient census is around 100 patients total for our hospital and we have 60 COVID patients right now. It's more than we can handle. It's all hands on deck.

 

Stacey Simms  14:46

What's your routine like for coming home?

 

Michelle  14:48

So with the two little ones, they don't understand that you can't touch mommy. So I shower at work. And then I come home so I end up getting home kind of late. If I finish everything On time 715 731 I've done so I don't get home till 815 at the earliest.

 

Stacey Simms  15:05

So tell me about the COVID vaccine. When did you find out you were eligible? And how quickly did you say? Yes,

 

Michelle  15:11

so I've been thinking about it long before it was even a possibility, and doing research and reading. And when I saw that the Pfizer vaccine was approved, our CEO, she's awesome. She's very transparent. She sent us emails all along. And she said that our hospital had applied to be a distributing center. And then she emailed us and said that we were approved, so I knew it would be coming. And I had already done my homework to know that I care for COVID patients, right, I see like the worst of what COVID can do. And to me a vaccine with a little risk or COVID with intense risk,

 

Stacey Simms  15:48

it wasn't really much of a question. Were you concerned? Or did you ask about type 1 diabetes? Did you talk to your endocrinologist? Or did you say, Okay, I know enough, I've seen enough.

 

Michelle  15:58

I actually, my endocrinologist doesn't know that I took it, I I did talk to my primary care doctor, who's also the pediatrician for my children, and I am breastfeeding. So I just wanted to check and make sure that it was going to be okay in that way. But the research shows there hasn't been breastfeeding research on the vaccine. But in general, vaccines are safe for moms to get when they are breastfeeding, and the chance of passing through breast milk is very small. So I considered all that I consider the risk for myself of getting COVID with type 1 diabetes, and I just didn't feel like the vaccine was going to be the big risk. Actually, I think I haven't gotten the COVID assignments as much as some of my other co workers have. And I honestly think that's because nobody else say it out loud. But my co workers know I have type one. And I think they're looking out for me, which is huge.

 

Stacey Simms  16:52

I'm curious what advice you would give as a you know, as a health care practitioner, as someone with type one who has seen COVID this year in a way that most of us have not, you know, what is your message about the vaccine? Oh,

 

Michelle  17:04

I think Americans like to think that life is about us and my choices as an individual and individual freedom. And the reason that I got the vaccine is actually about all the people around me more than it is about myself, I got it because my in laws are in their 70s. And they're helping provide child care for my kiddos. And if we give them COVID, and they get really sick, that's a big deal. If I as a nurse, bring home COVID and give it to other people I love. That's a big deal. So I got the vaccine to try to protect other people. Now at this point, though, I do want to say it hasn't been demonstrated that the vaccine keeps other people from getting sick, it just helps the person who gets the vaccine to not get a severe case of COVID. So protecting other people still needs to be demonstrated. But that's generally how vaccines work. So that's, I'm hoping that it works that way.

 

Stacey Simms  17:54

What was it like in your hospital,

 

Michelle  17:56

the message I keep seeing people say is hope. And that's how it feels. It's like this huge drop of hope that there could be an end to this huge thing. I don't know, there's so much I could say I think there's so much skepticism about vaccines and what it can cause but I just want people to remember, look into history, look and see what measles did to people before we had a vaccine. Look at what polio did to people before we had a vaccine, look at the impact of disease. And also think about that, when you think about the risk of a vaccine, what's the risk of not getting it?

 

Stacey Simms  18:35

My last sort of personal interview is with Geoffrey, he works in more of an administrative role. But he does spend enough time in the hospital and around staff that does see patients that he qualified to get the vaccine, he wasn't originally thinking that he would get the shot in this first batch. But then he explained why he changed his mind

 

Geoffrey  18:54

what my original thought was that I was going to talk to a number of providers a number of people and get their opinions. I wasn't going to do this based on my own research. I was gonna do it based on the research of my doctors. And my original thought was that I was going to wait a while to let more people get it and see what happens. But once I had the opportunity to do it, then after talking to a handful of doctors and decided the basic sentence was why wait, what are you waiting for? What do you want to see? And I kind of realized that what I want to see is I want to see people 234 years out with no complications and realize that I don't want to wait four years to get the vaccine. So what I want I couldn't get so I decided let's just do it.

 

Stacey Simms  19:35

So then what was the process like

 

Geoffrey  19:37

it was very quick, got signed in, got the shot, waited about 10 minutes 15 minutes, and was clear to go for me again. This was super early. It was really exciting for me because I got to see a lot of physicians that I know from what I do for work and and seeing all these doctors and that obviously believe in this enough to be standing there. first in line, this is required of us. So everyone that was there wanted to be there wanted to get this.

 

Stacey Simms  20:06

How about afterwards? What was your blood sugar? Like any issues? You know, sometimes with vaccines people have. I mean, Benny really never had any issues. Sometimes he had slightly elevated blood sugar, you know, when he was very tiny and he'd get the measles, mumps and all those vaccines, but he was tiny, but flu shots never really elevated his blood sugar. I'm curious what your reaction was.

 

Geoffrey  20:26

Now, I can't tell you for sure. This is a reaction from the from the actual vaccine, but my blood sugar's were low for a while. Whether it was really related to the vaccine, or if it was just sometimes you just run low for a day or two. I don't know, I don't have a clear cause for it. So it's a possibility, but I can't guarantee and waiting to hear some some things for other type ones that get that, honestly, the biggest issue that I struggled with, and it wasn't really struggle, I wouldn't say struggle. The biggest issue that I had was arm pain. There's a little bit worse than your normal intermuscular flu vaccine, but nothing horrible, nothing that prevented sleep, or there's just noticeable.

 

Stacey Simms  21:07

What's it been like over the last 10 months of it's a horrible year to be where you are hasn't been very difficult as has been busier.

 

Geoffrey  21:15

It's definitely been busier than normal. It definitely has not been easy. I think the energy right now is still we're, we're exhausted from all of the work we're putting in. But we're excited because we're starting to see the light at the end of the tunnel.

 

Stacey Simms  21:30

And what would you say for other people with type one, but what would you say to people who are you know, kind of asking about it or thinking about it? What should they do?

 

Geoffrey  21:38

I mean, if they've got questions, talk to your physicians like these doctors, especially in this, but what are we calling 2020. In this unprecedented time?

 

Stacey Simms  21:47

I'm calling it the great awful.

 

Geoffrey  21:51

During during the Great awful these doctors are spending a lot of time doing research, especially these specialists, they're trying to figure out how the Coronavirus and everything else related to it is going to affect their specialty patients. So I'd say talk to your specialists and and see what their get their thoughts on the matter.

 

Stacey Simms  22:11

I'm going to link up a lot of information in the show notes. But as everyone has been saying, of course, please check with your own physician. We took a lot of information here from Dr. Steven ponder, I was really excited that he made time to talk to me about his personal experience and a lot that he's learned Dr. Panda has lived with type one for more than 55 years. I started out asking him about the great photo he posted when he got his vaccine.

 

Dr. Ponder one of the nicest pictures I've seen on social media recently was when you posted yourself, I believe in a Santa hat with a big smile, getting the COVID vaccine. Tell me about that day.

 

Dr. Stephen Ponder  22:47

That day, I was coming back from an outreach clinic, I was contacted by the chairman of our department asking if I was interested in getting the vaccine that evening, as opposed to, I suppose waiting several weeks, because they just come into the vaccine. And the system is prioritizing getting all the health care providers vaccinated. I instantly said yes. And so I arranged for that evening to go in and get the vaccine done was given about 730 on Thursday evening, last week, it was very, not painful. It was just like a flu shot. Even very straightforward. They had a very, very sophisticated process for handling all the people that were coming in, they had a scheduling system, you filled out a piece of paper and look to get your disclosure paperwork for the vaccine, the vaccine Information Statement, which is about nine pages long, then you go right in get your injection, they give you a card where they give the lot number for the vaccine and the date you were vaccinated. And you're supposed to bring that back with you. For the second vaccine, which is approximately three weeks later, they watch you then for 15 minutes to make sure you don't have any adverse effects from the vaccine. So you're oftentimes sitting out in the large lobby with people you might know that are six to 10 feet away from us chatting for about 10 or 15 minutes. And if you've not had any, then you walk up to the check in desk, give them your little time card, which gave you the time you needed to wait. And then you're done. And you go on home. One thing I did do was I did sign up for the Wii safe, which is an app that's part of the vaccine Information Statement, which you can use to track your daily outcomes. ask you if you've had any soreness or any side effects that gets affected your work or your health in general. And I get a message like that once every day since I've got received the vaccine. That's interesting process from beginning to end.

 

Stacey Simms  24:42

Is that app something that's local to Texas, or is that a nationwide app?

 

Dr. Stephen Ponder  24:46

It's actually a CDC app. It's actually there's a QR code that everybody that receives the vaccine should get a vaccine Information Statement that's universal for any vaccine. You probably remember that with yourself or with your family members, but it In the last page, they have a an advertisement, if you will, for the be safe program. It's optional completely. And so you just need to go to the website, download the app, or you just scan the QR code that's on the ninth page of the vaccine Information Statement and download the app, it takes 1015 seconds to do the question. Every day, there are three or four questions in that said, I'm not sure how long it will continue. But I've been answering it every later in the afternoon every day. As I said, 15 to 20 seconds is all it takes to do it comes to the text message, time for your check in and just go in and answer the same questions. And all of mine had been negative, except for the first two days, which said I had a little bit of arm soreness where I received the injection. And by two days after that was done, I had no more symptoms whatsoever.

 

Stacey Simms  25:49

And I'll be nosy and ask as a person was type 1 diabetes, How were your blood sugar's because there's always a little bit of concern after vaccinations or anything like that, that blood sugars could be a little bit more erratic.

 

Dr. Stephen Ponder  25:59

My blood sugar's were fine. It did not change anything, quite honestly, Stacy, everything was nice and steady. As you know, I've developed a set of skills that I've shared with the world about how to manage this. And I really didn't have to invoke any additional skills to stay in control, I maintain my usual diet intake, insulin regimen, course I have a continuous glucose monitor on which allows me to see things as they are happening, which gives me a huge advantage in being able to detect changes before they become significant, and then decide how and when I'll step in and do something about them. So that process never changed. In fact, that process allowed me to do better, and to maintain the control over my, my diabetes, in the wake of this vaccine. That's great. And just to be clear, and I know you never self promote, but

 

Stacey Simms  26:50

you're talking about sugar surfing, and I always link up information when I speak to you because people are always curious. But to be clear, you didn't have to do extra sugar surfing to stay in range after the vaccine. That's what you're saying,

 

Dr. Stephen Ponder  27:01

right? I don't want to make sure you're serving sound to, you know, way up there. It's basically decision making based on pattern recognition on these cgms. I look beyond just the number I'm looking at the trending pattern. And as you probably know, from the research you've done on this, it's more involved with shapes of the trend lines, and learning how to to interpret those shapes and then in turn manipulate them. If you activity, food intake, insulin, what have you, it's really nothing more than a decision making model that looks at information coming at you dynamically as opposed to a single point in time, which is what blood glucose leaders have given us for decades, and form the whole basis of pattern management, which was looking at trends over large stretches of time, looking at short stretches of time, with data in motion, that's what sugar Surfing is really all about is interpreting those data.

 

Stacey Simms  27:55

I am sure that your patients have had many, many questions about the vaccine as information started coming in a couple of weeks ago, what are you telling them? I mean, many of them are too young to get the vaccine, I would assume but what kind of questions and information you're sharing with most of your patients?

 

Dr. Stephen Ponder  28:11

Well, the information I've received from our infectious disease experts, the data I've read and heard from other sources are overwhelmingly in support of receiving a vaccine if you happen to have diabetes. As you know, there is an increased risk, whether you have type one or type two diabetes, for having more severe outcomes, and if you don't, so there's a huge onus on encouraging more people to get this vaccine, assuming they're eligible, assuming they don't have a history of adverse reactions to vaccines. The CDC has a well described list of considerations you should take into account when you're contemplating getting the vaccine. I would certainly review those. Anybody that's listening to this podcast, review those and making your decision. But assuming you don't have any of those contraindications, I would wholeheartedly endorse COVID vaccination for anyone with diabetes, and quite frankly, anybody without diabetes is eligible as well. This is not just focused just on diabetes friends, yeah.

 

Stacey Simms  29:15

Are there situations where parents have asked you, you know, hey, should my 10 year old with type one look at a vaccine, you know, what are we doing for younger kids? Can you reassure parents of younger people with type one?

 

Dr. Stephen Ponder  29:26

There are two points of view answering that question. One point of view is if you're a 10 year old with type 1 diabetes, what is your relative risk of having a severe outcome with COVID-19? I have patients, I've had patients over the last several months that have come down with this to a person they have all gotten through the infection successfully. Some have had some mild symptoms, some have had virtually none at all. On the other hand, their parents and other members of the family who are older or who may have other comorbidities were while are likely to show signs of illness, some of them moderate to many Maybe even severe, requiring hospitalization. So, for the individual that young with Type One Diabetes, their chances of getting through this without a vaccine is quite good. It's very, very high. Quite frankly, I'm unaware of anybody with Type One Diabetes that's had a very, very serious outcome. That doesn't make me totally knowledgeable of what's happening out there. But it's been my experience in my clinical experience. I'm in clinic five days a week. I think that from the larger perspective, children may be included at some point down the road. As eligible for the vaccine. Those studies still need to be done. The Pfizer vaccine covers down to age as young as age 16. And the maternal vaccine is 20. I don't know about the other vaccines that are still under phase three twapp trials yet, but there is a discussion ongoing that children should be included in trials over the next year, and to determine who would best benefit from the vaccine. Now, if your child with type 1 diabetes could serve as a vector to the disease, I can see those who are more prone to illness in the family would be at risk. So dismissing them or ignoring them into consideration of who gets the vaccine could be harmful in the long run if they're trying to fully eradicate or get as much herd immunity against this condition as we possibly can.

 

Stacey Simms  31:20

Can you speak a little bit to autoimmunity and this vaccine? In other words, I've seen people posting on social media, and it's a little confusing, and they're worried about people who have compromised immune systems, or have you know, immunosuppression, and type 1 diabetes, which is an autoimmune disease, which is different. Could you just take a moment and talk to us about the maybe the difference there or if people with autoimmune diseases are okay to take the shot?

 

Dr. Stephen Ponder  31:49

They are in general they are I had a request from a former patient of mine, who's now in her 30s, who had a renal transplant A number of years ago, and she's on program, which is an anti rejection medication, and prednisone relatively low dose, both of those medications are used to prevent her kidney from being rejected. Her question was, just as you asked is, is my compromised immune system a reason why I should not get the vaccine. I wanted to verify that I would give her the most accurate answer. I asked my infectious disease experts, is this a problem? And I knew what he was going to say. But I wanted to make sure I could tell the family that I heard the strep in the source, yes, they should consider getting the vaccine. The only caveat would be that the compromised immune system might result in less of an immune response to the vaccine, not that it would be harmful or hurtful to her renal transplant, but that it might blunt her individual response to the vaccine. And that's just one isolated example of a question like that auto immunity in general is become more or less a tagline or become a category. Unfortunately, because type 1 diabetes is You and I both know an autoimmune disease. Most forms of thyroid disease have some element of autoimmunity, celiac disease, and the list goes on and on and on. And so I think we've gotten lost in a categorization a stereotype if you will, what autoimmunity really nice. If you're talking about a compromised immune system, the result of that is most likely that your response to the vaccine might be blunted, but not necessarily eliminated. That's important to remember. I think, as always, because there's so many different forms of compromised immune systems, that it's wise to discuss with your primary care provider or the care provider that manages your particular condition which creates the immunocompromised state, and ask them their opinion on whether it would be wise to take the vaccine or not. So my general response is, there should not be any major reasons not to do that, unless there are specific elements of your immune system that are known to result in perhaps a significant overreaction to the vaccine. And that's where I think a lot of people are getting confused, is they're thinking more in terms of the the adverse side effects like hives and, and anaphylaxis. And those are conditions that anybody can have, regardless of whether they have a classic autoimmune disease or not. And to that point, as I referred to earlier, when, after I received my vaccine, the CDC has recommended, at least in the short term, that all the vaccine sites be adequately staffed and equipped with medication to manage an acute immune reaction like an anaphylaxis and so our injection area was right adjacent to the emergency department within about, you know, 100 yards. And so just in case Plus, they would have epi pens epinephrine tans, in case somebody were to develop an acute reaction to the vaccine. As far as I know, there were no reports of any significant immune reactions and certainly you can add hives and itchiness and so on, but you're talking about the situations where somebody gets an enlarged tongue may have some problems breathing, and so on. Those are some of the reports that have made the new the national news international news. And those are treated effectively with epinephrine injections. And in many cases, these individuals already knew they had those kinds of responses to certain things. And they've already well equipped or prepared with FM Fm 10s,

 

Stacey Simms  35:20

just with autoimmunity and type 1 diabetes, to put a fine point on it. I think many people are concerned that by getting vaccines when they already have an autoimmune issue, that their immune system may somehow become confused or overreact to the vaccine. It sounds like you're saying that's not what is happening with the COVID vaccine.

 

Dr. Stephen Ponder  35:37

I've not seen any evidence of it say that if I receive the COVID vaccine, that I need to be worried about having a higher risk of developing other autoimmune conditions, I've looked at this autoimmune condition for 55 years, as you know. So that's not a consideration. I also think that we have to look at this in the big picture of risk. And if there is a risk, it would be infinitesimally small compared to the much greater risk of getting COVID and having an adverse outcome from the COVID. So we live in a world of risk, whether we acknowledge that or not. And we make our decisions based on our perception of that risk. If we over perceive a risk, which is not as great as it really is, then it's going to tend to deter many of us from doing something that might be in our best interest, such as the COVID vaccine, but just to be safe, certainly Always consult with your primary doctor, if you have any questions about whether I should or shouldn't take this vaccine, or perhaps wait a little bit longer. But again, even delay, in theory increases risk further, since we now do have a way to at least fight back against this pandemic.

 

Stacey Simms  36:43

You know, it's been such a rough year for everyone. My family's been so fortunate we've been home or doing our part has meant watching Netflix and podcasting and you know, being here, but for folks like you, you have been in hospitals, you've been in clinic, you've been seeing patients, I'm sure you have you are tired of wearing your mask and you want to hug your patients again, can you give me a little bit of your perspective of what it was like when you when you walked into get that vaccine,

 

Dr. Stephen Ponder  37:10

nothing could have been more hopeful and optimistic. And I'm sure my mood and attitude may have changed. And in the days following the vaccine, I did feel I was doing something constructive, that was going to ultimately result in an improvement in my health and reduce my risk of getting this condition. On the other hand, they were very clear about the fact we need to continue to wear our masks, wash our hands, maintain our distance, avoid crowded places, and so on. I'll be honest with you, Stacy, as you were asking that question, I was thinking back to the fact that for 55 years, I have to take injections every day, I have to do certain things to stay healthy and live with diabetes. And eventually they became sort of just routine and Matter of fact, for me, and it dawned on me that wearing the mask and doing the hand washing is also over the last several months become kind of a matter of fact, behavior for me. And I don't personally my personal personality is not to begrudge that I just do what I need to do, because I'm helping other people as well as myself, family members, you know, neighbors, co workers, patients. And so, to me, I don't see it as an excessive sacrifice, given the benefits that I get from it, from hopefully staying free of the virus, which I have been able to do for the last whatever nine or 10 months since we've been doing this. And I do work with patients on a regular basis. I'm sure I come across patients who may be sick or may have this but I have my mask on I keep my distance I keep my hands away from my face. I do things I didn't do as much of a year or so ago. But those behaviors have now become kind of ingrained in my behavior and I no doubt probably in yours too. And you don't necessarily think about it but then it becomes kind of a way of life. So just like the diabetes has become a way of life. Now I know that many of us look forward to the day when we don't have to wear the masks and but I'm not sure that we look forward to the day where we don't have to wash our hands. I don't know about that one. I didn't know about that.

 

Unknown Speaker  39:06

Yeah, I

 

Dr. Stephen Ponder  39:06

think I think closer being closer and masks are fine getting rid of those, but I'm okay with people still washing their hands. Me too.

 

Stacey Simms  39:14

Hey, before I let you go you share wonderful photos of your granddaughter Cammy Do you mind if I ask how how she's doing and how. And I don't be too nosy if she's still living with you. You know what what your routine is like coming home we just protect not just her but the other people that you live with. You know what have you been doing the last couple of months as you come home from work?

 

Dr. Stephen Ponder  39:32

Well, my granddaughter Cameron, she is actually in a preschool setting, which is very safe. It's she's been there for six months and nobody's fallen ill that was COVID she's been doing fantastic there. She wears her mask faithfully every day. They hand sanitizer and of course it is a daycare for four year olds three and four year olds, so they're all in each other's faces all the time but so far we've been very fortunate where we live not to have any obvious outbreaks. She still living with us. She's actually visiting part of her family down in the US Virgin Islands right now. And I have to tell you a funny story. She was at the beach down there. She's on St. JOHN. She was telling her father, I'd like you to take me to another beach tomorrow. And he asked her why Cameron, because this speech is too salty.

 

Unknown Speaker  40:19

Oh, I love it.

 

Dr. Stephen Ponder  40:21

She's used to going to Lake up here. Yeah. And so they took her to a different beach yesterday. Of course, it's ideal like down in the Virgin Islands. And that's where her where her father and grandparents live. So she's down there visiting right now for three weeks. And she'll be back with us in about three weeks. So we're looking forward to having her back. And yes, it's interesting, being a full time grandparent with your grandchild who lives very close to you. But it's a blessing as well. And it's one of my primary motivations for taking care of diabetes, for staying waiting COVID my motivations are not medical motivations, mine are very personal, for taking care of myself, and I want to see that little girl grow up, I want to see my family thrive. I want to be able to continue to help people in whatever way I can. And that's why I take care of myself now, because I'm looking for some agency or something or some time and range light sensor. But for more transcendent types of purposes.

 

Stacey Simms  41:16

Well, I always appreciate you sharing the information. It's always so useful. And this time, right now is such a turning point. I hope it'll be a long way to go. I certainly don't expect to throw off the masks in a week or two or anything like that. It'll be a long time coming. But it's so nice to have something hopeful. Finally, and I gotta tell you, this is a selfish episode for me talking to all you people with, you know, in the healthcare industry, because I'm so excited when I saw the photos, it just made me happy. Who knows when we'll get the vaccine here. You know, I'm younger. I don't know. I'm not that young anymore. Doctor ponder, but I, you know, I'm not in healthcare here. Yeah. Yeah. So it'll be it'll be a while. But boy, thank you so much for sharing your stories. And you know, you I know you'll keep us posted on social media. But thanks for everything you've done to encourage people to, you know, to stay safe and stay healthy. We really appreciate it.

 

Dr. Stephen Ponder  42:02

Well, thanks for all you do for the diabetes community, Stacy and getting the word out and being the advocate that you are. It's an honor to know you and it's an honor to speak to you this morning. Thank you very much.

 

Announcer  42:17

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  42:23

It is possible by the time this episode airs that 20 million Americans might be vaccinated against COVID. I don't have anything more profound to say than that. Yes, it is the beginning of a new year. It is hopefully the end of what I jokingly called there the Great Awful when I was talking to Geoffrey and I have been referring to that throughout the year. It's gonna be a while before we go back to normal before we can stop wearing masks. Everything that all these wonderful health care workers that I talked to, for this episode, have said,

So again, I will link up more information in the show notes, you can always go to Diabetes connections.com and click on the episode homepage. There's a transcript for every episode. I started that in 2020. And we are working backwards now to fill in the previous five years of transcripts as well started this in the summer of 2015. My goodness, a lot of episodes to get transcriptions for but I am working on that.

If this is the first episode you've heard, thank you so much for dropping by and checking it out. I hope you liked what you heard. I put out new episodes every Tuesday, and you can find out a lot more on the website. Please join our Facebook group as well. That is Diabetes Connections, the group and you can follow me on social media, Stacey Simms or Diabetes Connections on pretty much every platform still not Tick Tock. That's not gonna happen. Not even 2021 Thank you, as always to my editor John Bukenas from Audio Editing Solutions. Thank you all so much for listening. Happy New Year. Here's to brighter days ahead. I'll see you back here next week. Until then, be kind to yourself.

 

Benny  43:57

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

1 « Previous 4 5 6 7 8 9 10