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Diabetes Connections with Stacey Simms 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.
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Now displaying: June, 2021
Jun 29, 2021

Dexcom is going big in their new campaign to get us talking more about Time in Range. This week you'll hear from their most famous spokesperson, Nick Jonas.

The singer and actor was diagnosed with type 1 diabetes at age 13, back in 2005. In this recorded webinar, he answers questions about the new campaign and shares some behind the scenes info about his own journey with diabetes.

As Stacey says in the episode, for this event, media was invited to send in questions. The organizers selected the questions and they were asked by Melissa Katz, who is credited as host and representative of The Global Movement for Time in Range.

The Global Movement for Time in Range is a global consortium of diabetes community thought leaders working together to improve the understanding and accelerate the adoption of time in range as the standard of care in diabetes management. With the support of Nick Jonas, Beyond Type 1, Children with Diabetes, College Diabetes Network, Dexcom, JDRF International and Taking Control of Your Diabetes, the group will jointly address issues to improve the lives of people with diabetes. To learn more about the movement and how to get involved, visit WhenInRange.com.

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

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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Get the App and listen to Diabetes Connections wherever you go!

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Episode transcription below: 

 

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. This is Diabetes Connections with Stacey Simms. This week, a new effort to get us talking more about time in range. Dexcom is launching this campaign with their most famous spokesperson, Nick Jonas,

 

Nick Jonas  0:35

I would say A1C is a useful piece of data. But as I mentioned before, we're talking about a collection of numbers and you receive that data after a certain period of time, our world and specifically my world on so many people out there moves at such a rapid pace that the more information we can have at the fingertips, no pun intended is really incredible thing.

 

Stacey Simms  0:56

Jonas answers questions about the time in range campaign and shared some behind the scenes info about his own journey 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 and oh so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. If you are new, my son was diagnosed way back in 2006. Right before he turned two, he is now 16 and a half. My husband lives with type two diabetes. I don't have diabetes, but I have a background in broadcasting and that is how you get the podcast.

I doubt he needs this introduction. But singer and actor Nick Jonas was diagnosed with type one at age 13 in 2005. He very famously partnered up with Dexcom in their first Superbowl ad earlier this year, and now he's part of that company's effort to educate about time in range from the news release they sent over Dexcom along with beyond type one and organization Nick Jonas co founded children with diabetes, the college diabetes network JDRF International and taking control of your diabetes has announced the global movement for time in range and awareness and education campaign to improve the understanding and accelerate the adoption of time and range as the standard care in diabetes management.

For this event, we were invited to send in questions ahead of time, the organizers selected the questions then they were asked by Melissa Katz, who is credited as host and representative of the global movement for time in range. I sent in three questions. I'll come back after and tell you more about that. And I'll share the one that they didn't use. I will tell you right off the bat. Everybody I know in the diabetes media on that call sent in a question about Nick using his platform to push for insulin affordability and access.

quick housekeeping note. Yes, Dexcom is a sponsor of the show, but they don't tell me what to say. longtime listeners are familiar with this. All my disclosures are on the website, Diabetes connections.com. But it's always worth the reminder. And you should know I edited out the very beginning of the session, they played a video about time and range. I'll link that up in the show notes as well. And I edited out the very end where they talked about details for media about getting the audio and some other notes. Other than that it is the full unedited q&a, and we'll hear it in just a moment.

But first Diabetes Connections is brought to you by Daario. Health. Over the years I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. That's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on my son on Benny, the Daario 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. Daria is published Studies demonstrate high impact clinical results, find out more go to my daario.com forward slash diabetes dash connections.

 

Melissa Katz  3:59

So our guest of honor here needs no introduction, especially in his own diabetes community. So please welcome diabetes Rockstar Nick Jonas.

 

Nick Jonas  4:07

Hello, diabetes Rockstar. That's my official title. Hello, everyone. I'm calling in from Cleveland, Ohio at the moment. So I appreciate your being on excited to talk to you about this global movement for time and range. It's obviously very important to me as a person living with type 1 diabetes since 2005. Now, I guess and I'm excited to be launching this movement for time range alongside Dexcom my partners and leading diabetes nonprofits, including one that I co founded, which was part of that video beyond type one, our goal is to make people aware of time and range and its benefits. And also just you know, I think so many people either live or know someone that lives with diabetes that are just not aware of this and to be able to kind of put this in the forefront and start a conversation around it. And it's an amazing thing for me as a diabetes ambassador and advocate, thrilled to be able to talk to you today and walk you through it all.

 

Melissa Katz  4:58

Fantastic. So let's get right to it, as you know, the diabetes media submitted questions in advance, so they're on line waiting for those answers. And we're going to start with Matthew Garza from diatomic. He asked, who introduced the concept of timing range to you.

 

Nick Jonas  5:14

But like all things with my life with diabetes, I rely on my doctor or everything, wonderful doctor, out of UCLA in Los Angeles and endocrinologist there. And we've had a candid conversations. And I think that the thing that really stood out to me was just talking to the benefits. And you know, we talked about in that video, high blood sugars are not ideal and have an effect on day to day life, diabetes, and obviously, lows can be really dangerous, and also have a major effect. The Dexcom clarity app definitely helps me with that, and has allowed me to see in real time throughout the day, my time and range or moments when it's not. And that's the thing to remembers, as a type one diabetic, you know, my main advice to newly diagnosed people is just to take a deep breath, and try to understand that there's going to be days that are unpredictable and harder than the others. And don't get down on yourself for that there are helpful tools and things that make that a little easier. But it is a journey. And once you can keep a positive attitude, it'll be alright.

 

Melissa Katz  6:11

So that would encourage other people with diabetes to have this conversation?

 

Nick Jonas  6:15

Well, I think there are a lot of ways, I think we hope to kickstart conversation here, obviously, around the importance, time and range and how it makes people's lives better. And I can speak to that personally, which really has become such an important thing for me to think about that time range and what it really means and not only relying on a one C, which would be your you know, kind of collect reading for two to three months and quarterly reading. This is a really valuable real time tool. And there's there's a lot of assets for people that maybe want more information, want to learn more about this and the impact you can have on their lives with their family and friends lives, when in range calm is a good one, obviously, and other social media tools and links that we'll share with you later. But a lot of good conversation starters out there and thrilled to be able to help in that process.

 

Melissa Katz  7:06

That's a great way to segue to Jessica apples question. She's from a sweet life. And she's asking, we know CGM is a great way to monitor time and range. But what's the best way to achieve time range in your opinion?

 

Nick Jonas  7:19

Well, everyone's journey with diabetes is different. And so I can only speak to mine. For me, it's a combination of obviously relying on my doctors kind of input and real time changes that we make to, you know, my life with diabetes as a whole one. And part of that is physical activity. Diet is a big aspect or just meal management and kind of understanding what's serving my body. And a lot of ways because I live such a crazy lifestyle, I think of myself more so as a an athlete in some settings and kind of prioritizing, living a healthy life with my diabetes, but also wanting to perform my best. And so there's, there's a combination of things that come into play there. And one of the other aspects is obviously, knowing where my glucose is a real time. And Dexcom definitely helps with that pretty obvious. And you know, I'm, like everyone else in the world person that looks at my phone way too much. And so having that information, right there is really helpful. Again, that's just my kind of personal, customized journey. And it's, as I said, a combination of all those things, but for everybody out there, it's gonna be different and you got to figure out what works for you. But having a bunch of tools in your toolbox is a helpful thing. And so that's probably a good place to start.

 

Melissa Katz  8:31

Alright, so speaking of athletes, it was a big moment, during the Superbowl to have you up there doing awareness raising and education about CGM. That was pretty exciting. However, there was also some concern afterwards about access. That was a big conversation that occurred which was I think, was a good thing. And Ross Wallen from diabetes daily is asking, CGM can be expensive both in the US and other countries, especially those without robust healthcare systems. And in some countries, it's not available at all. Is there any worry about emphasizing time and range when some people won't be able to access CGM?

 

Nick Jonas  9:03

I think that very aware all of us on this call and beyond and all the partners, the need for access and that growing conversation and priority for us all in the US and globally. You know, I think that that the exciting thing for us was starting the conversation about awareness in a big way on something like the Super Bowl was a really big step. And so I was thrilled to be a part of that. And thinking back to a time You know, when I was newly diagnosed, if there was someone that I looked up to or admire, who normalized something like diabetes for me on a stages basis, that would have been really exciting, which I think just again, helps the bigger conversation of this need for access around the world. And we have the onsite one are fully committed. We have a wonderful board there that that have been speaking about this a lot and really building a game plan from the ground up and wanting to see that change really happen and do all we can be part of it as well as the other partners I know that are on this call. So it's priority for us, and definitely something we'll work on is. But as you said, the Superbowl was was such an exciting moment, and something that I hope we can do more of taking diabetes to big stages like that. And just normalizing a bit.

 

Melissa Katz  10:25

Absolutely. So you mentioned A1C earlier, and my classic is with diabetes, mine is asking a when c remains the gold standard for diabetes care, where does it fit in this admission?

 

Nick Jonas  10:38

Well, I'm certainly not a doctor. I wouldn't even consider myself a diabetes expert, obviously, even though I've lived with this thing now for quite a while and have my days where I feel like I've really nailed it. But I would say A1C is a useful piece of data. But as I mentioned before, you're talking about a collection of numbers and you receive that data after a certain period of time, our world and specifically my world on so many people out there moves at such a rapid pace that the more information we can have at the fingertips, no pun intended, is really an incredible thing. So I think that that time and range shows the trends in real time provides much more complete picture of glucose control over time, which is really a great thing. It's not to say that it's a, you know, one or the other. You know, there's many ways to manage your life with diabetes and enhance your life diabetes, but I think that the more information you have, the better it's going to be. And the more time and range, it just is obviously going to be

 

Melissa Katz  11:42

better days. You probably know all of our diabetes media or either have type one or have a family member for the most part. And Stacey Simms is a mom with a son who has type one, and she has a podcast called Diabetes Connections, and shows her a little bit more about your personal journey. So her question is, we'd love to hear about how you prepare for and recover from physical days.

 

Unknown Speaker  12:05

I know you have a lot of those.

 

Stacey Simms  12:11

Right back to Nick answering my question. But first, Diabetes Connections is brought to you by Gvoke Hypopen . I mean, you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar. And in the case of very low blood sugar, why do we carry emergency glucagon there's a new option called Gvoke Hypopen, the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly 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 dot com slash risk.

Now back to Nick Jonas, and he's answering my question, actually a listener question about what he does to plan for and deal with very active days.

 

Nick Jonas  13:05

Yeah, I mean, I have a physical day coming up today, rehearsals and I'll be moving around singing and dancing around all day and all that and, you know, my PrEP is really to try to get good rest, and then start with a good meal, something that kind of sets me up for success with all the necessary protein and macronutrients and other sort of sustaining carbs. And then from there, just about staying on top of it. I like to just kind of frequently check in and see where I'm at and make real time adjustments. Knowing to that, obviously, the physical activity is going to have an impact. And whether it's this thing I'm doing now, or touring, or even just going out for day golf, you know, I'm always trying to stay on top of it and rely on my friends and family to if there are things that I need or if I need a second to take care of something, whether it be high or low blood sugar, then I take the time to do that.

 

Melissa Katz  13:55

Yeah. All right, as I said, faces a mom. So she's also concerned about your sleep. And she's asking any insight for your routine and how you prepare for sleep. Well, I

 

Nick Jonas  14:04

think like most people, my routine is basically to watch Netflix. So I get tired and hope that I can just sleep peacefully through the night. That seems to be the routine these days. But outside of that, it's pretty simple. I just, there's a certain range I like to be in before asleep, so that I don't overcorrect. If I'm higher or low that I'm hanging out there too long. I try to kind of target that range. And then obviously, you know, the alarms within the Dexcom really helps well and when I'm traveling I'm not with my wife, I'll share with her and that kind of gives her peace of mind which is a wonderful thing and really helpful tool.

 

Melissa Katz  14:44

Alright, so we're talking about the Super Bowl and we've heard so many sprays of little kids kind of jumping up and down. So excited to see you on TV. And you are diabetes role model for so many people. I'm curious about who were your diabetes role models when you were growing up?

 

Nick Jonas  14:58

Well when I was newly diagnosed that there really wasn't a person that I knew of that had diabetes or a role model of sorts, you know. So I think it was a real goal for me to be pretty outspoken when I was newly diagnosed and living a pretty public life, hoping that it would bring people some encouragement and that they would have someone to feel like they're on a journey with and what's happened is in being more open and honest and kind of outspoken about living with type one, I feel like my life's been enriched by hearing stories, feeling encouraged, you know, whether it's watching the superbowl commercial with their friends and family and feeling normalized. All of a sudden, or or, you know, whether a song that I've written I've spoken about this journey has encouraged them, those stories that in turn encouraged me and those become my role models and my heroes, my diabetes heroes.

 

Melissa Katz  15:52

Alright, so what resources should we be finding people to about the movement? Well, one enraged,

 

Nick Jonas  15:57

calm is a helpful one, lots of educational resources there. And you know, of course, there's this little thing called social media, it can be very helpful. So hashtag one range, and there will be lots of other assets, I'm sure you guys will share with them. But really, again, excited for me to start this conversation. And, you know, to be working alongside some partners who I know are passionate about, not only this initiative and program, but also doing good in the world and the nonprofit aspect of this the thing that that is most inspiring and exciting to me, outside of the obvious, which is enriching and encouraging people to you know, live with time and range, you know, that which is it's been an invaluable tool for me. So, a lot of positives here and thrilled to be a part of the conversation.

 

Melissa Katz  16:43

Well, thank you so much for the time this morning. We know how busy your schedule is, and how important the diabetes community is to us. So thanks for making it a priority.

Thanks for having me.

 

Stacey Simms  16:51

You're listening to Diabetes Connections with Stacey Simms.

As always more information at Diabetes connections.com. If you can't find the show notes on whatever podcast app you're listening to, you can find him there. If you're new, and you found us because of Nick Jonas, we are coming up to 400 episodes now. And I have a very robust search on the website. So if you want to hear about athletes, or celebrities, or technology, or just living with type one, or even type two diabetes, you can find out more at the website. And please let me know if there's an episode you would like to hear.

Listen, I'm really glad they asked a couple of my questions. And they were actually your my listeners questions about his active routine and about sleep. And about his diabetes role models. I've sent that one in too. But the questions I wish they had asked was the one I sent in about access and affordability about insulin editorializing here, obviously, but look, a huge impediment to time and range is the cost of insulin and the supply of insulin, especially here in the United States, where we have mentioned this before one in four people are rationing their insulin, I would love to see Nick Jonas, take a stand on that. I know I'm not alone, boy, he could really make a difference just in terms of public education. So you know, we'll look we'll keep pushing, we'll see what we can do there. But I do appreciate you sending me those questions.

Diabetes Connections of the group is where I do most of my communication in terms of you know, getting listener questions, finding out what you want to know more about. So please join Diabetes Connections, the group on Facebook if you haven't already.

Alright, and as I have said, Dexcom is a sponsor of the show, and we have been using the Dexcom system since Benny was nine years old. We started with Dexcom back in December of 2013. And the system just keeps getting better. The Dexcom G6  is FDA permitted for no finger sticks for calibration and diabetes treatment decisions, you can share with up to 10 people from your smart device. The G six has 10 day sensor wear and the applicator is so easy, I haven't done one insertion since we got it Benny does everything himself. Now he's a busy kid, knowing he can just take a quick glance at his blood glucose numbers to make better treatment decisions is reassuring. Of course, we still love the alerts on the alarms, and that we can set them how we want if your glucose alerts and readings from the G six 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.

Before I let you go, just a reminder that every Wednesday live on Facebook, I'm doing in the news. It is a five or six minute roundup of all the headlines and news in the diabetes community of the past seven days that's live on Facebook at Diabetes Connections, the page and that's 430 Eastern on Wednesdays and then we turn that into a podcast episode. You can find it on Instagram and the YouTube channel as well. I'm having a lot of fun with that. And I'm working on my set on my studio. We'll see I have a green screen. You know we're working on some lighting. I don't know. It could look great. It could look very silly. I'm sure you will let me know. thank you as always 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 in just a couple of days until then be kind to yourself.

 

Benny  20:11

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

Jun 25, 2021
It's "In the News..." the only LIVE diabetes newscast!
Top stories this week:
⭐Maine passes insulin safety net program
⭐MS Attorney General vs Insulin Companies
⭐Afrezza covered by Medicare
⭐D-Data Exchange news
⭐Looking ahead to ADA2021
Join Stacey live each Wednesday at 4:30pm EDT at www.facebook.com/diabetesconnections

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 below:

 

Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and each week I’ll share the top diabetes stories and headlines of the past seven days.  We do this live on Facebook so whether you’re joining me right now or watching or listening after, I’m here to get you up to speed quickly on what’s happening with diabetes technology, research, and our community. As always, I’m going to link up my sources in the Facebook comments and in the show notes at d-c dot com so you can read more when you have the time.

XX

In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know Stuff”

XX

first off.. want to give you a heads up that ADA Scientific Sessions is kicking off this weekend, so expect to hear studies from just about everyone in the space. I’ve got interviews lined up for the main show. There are usually some breakthroughs and – while you can’t really count on it – some FDA approvals seem to come out this time of year as well. Stay tuned and follow the hashtag #2021ADA .

XX

Legislation news.. the Governor of Maine last night signed a new law creating an insulin safety net program in that state. It allows eligible Mainers to go to a pharmacy to get a 30 day emergency supply of insulin caped at $35. It’s modeled after a Minnesota law that was passed last year, the “Alec Smith Insulin Affordability Act.”

Exactly what eligible means in this case it tough to find.. although it looks like everyone with type 1 who has less than a seven day supply – and - with some exceptions, can be used once every 12 months.

https://www.wmtw.com/article/democrats-propose-bill-that-would-create-insulin-safety-net-program-cap-price-for-one-monthly-supply-at-dollar35/36512006

XX

Mississippi’s Attorney General Lynn Fitch has filed a lawsuit against drug manufacturers and pharmacy benefit managers she says are working together to manipulate and inflate insulin prices. She says, quote, “ As the mother of a diabetic, I know the emotional, physical, and financial toll the unconscionable price of insulin has on families,” These companies are exploiting the vulnerable. I’m fighting back because you should never have to decide between paying the ever-increasing price of insulin or compromising your care.”

The complaint alleges violations of the Mississippi Consumer Protection Act for unfair and deceptive practices as well as unjust enrichment and civil conspiracy.

https://khn.org/morning-breakout/mississippi-attorney-general-alleges-insulin-price-fixing-sues-makers/

XX

Starting next year, Afrezza inhaled insulin will be covered by Medicare.  It will offer all doses under the 2022 Medicare Part D Senior Savings Model.. capping the co-pay per 30-day supply at 35-dollars. Afrezza is the only inhaled ultra rapid acting mealtime insulin in the US. MannKind – the company that makes it – has other assistance programs. But this is the first time it’s covered by Medicare

https://www.globenewswire.com/en/news-release/2021/03/15/2192789/29517/en/MannKind-to-Participate-in-2022-Medicare-Part-D-Senior-Savings-Model-to-Make-Insulin-More-Affordable-for-Seniors.html

XX

Some updates on the The American Diabetes Association's Standards of Medical Care in Diabetes. These include more information on heart and kidney disease in type 2 and the studies we’ve been talking about for a while about teplizumab. Those show THAT medication can delay onset of type 1 in high risk relatives of people with T1D.

https://www.medscape.com/viewarticle/953438

XX

DiabetesMine hosted it’s D-Data ExChange – a biannual gathering of leaders in diabetes technology and innovation. Organizers say the focus was on increasing access, expanding the market for tools like CGM to non-insulin users and consumers which has been a hot topic lately, and  building out education and support. Couple of interesting presentations.. including Waveform – a new 14-day-wear CGM with a rechargeable transmitter and reusable sensor insertion tool.

Levels – which is a consumer CGM product not just for people with diabetes and from Nudge BG – Diabetes inventor Lane Desborough’s new algorithm designed to slightly move or “nudge” basal insulin in response to CGM data.

https://www.healthline.com/diabetesmine/summer-2021-diabetesmine-d-data-exchange-tackles-acces-education-and-support#Whats-on-the-June-#DData2021-program?

 

XX

quick break – want to tell you about one of our great sponsors who helps make Diabetes Connections possible.

  • Inside the Breakthrough is a podcast that mixes historical wisdom with modern insight – it’s a science show that’s also entertaining. I love it. They cover everything from snake oil to the actual Eureka moment. There’s even an episode about the guy who discovered the importance of hand washing in hospitals and how no one believed him. And this actually relates to diabetes! Listen to Inside the Breakthrough wherever you listen to podcasts..

Back to the news…

Canada has passed an act to establish a national framework for diabetes. The idea is to improve prevention, management and research. Diabetes Canada developed Diabetes 360° in collaboration with more than 100 groups and individuals from across the country.

The World Health Organization recommends every country implement a national diabetes strategy-and since 2013, Canada has been without one

https://www.diabetes.ca/media-room/press-releases/legislation-for-national-diabetes-framework-in-canada-becomes-law

XX

That’s Diabetes Connections – In the News.  If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com.

Please join me wherever you get podcasts for our next episode -Tuesday – it’s a bit up on the air right now.. but I am scheduled to take part in a news conference with Nick Jonas, who famously lives with type 1. I hope to bring that to you – and we’re sitting down with Dexcom’s CEO next week so if you have a question you want to ask, post it for me in Diabetes Connections – The Group.

Our current episode out right now is all about the PROTECT trial –hoping to slow down or even stop diabetes in the newly diagnosed.

Thanks and I’ll see you soon

 

Jun 22, 2021

The PROTECT Study is testing how well an investigational medicine works in children and teens with type 1 diabetes. The hope is that this drug, called teplizumab, would help people continue making more of their own insulin and reduce the need for injections, have better glucose control and/or fewer complications of T1D. To enroll in the study, you need to be within six weeks of diagnosis. That's a tough time to make a big decision like this.

We caught up with the Lahners family - 16 year old Alex just marked one year with T1D and he's spent almost that entire year in the PROTECT study. He and his father talk to Stacey about the decision to take part and  what happens during this trial. Alex doesn't know whether he got the drug or a placebo, but he's only using six units of insulin or less a day!

Info on the PROTECT study - including how to enroll

Previous episode which included information on PROTECT

In Tell Me Something Good  - A big achievement for one of the first families Stacey found in the online community. ThisIsCaleb is a high school valedictorian!

Learn more about Medicare coverage for Dexcom: www.dexcom.com/G6-Medicare

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 below: 

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.

This is Diabetes Connections with Stacey Simms.

This week, imagine being newly diagnosed and having to decide right away whether to take part in a clinical trial. The protect trial is for kids and teens and needs to start within six weeks of diagnosis. Alex Lahners agreed to do it.

 

Alex Lahners  0:42

I know that I don't want future people getting diabetes. And I didn't want anyone I knew to get diabetes. So I ultimately was like, I'm not just going to do this for myself. I want to do this for other people who are in the future going to be diagnosed.

 

Stacey Simms  0:56

Alex is 16 he was diagnosed last year, he and his father talked to me about the decision to take part and what happens during this trial.

And tell me something good. A big achievement for a kid I've never met but feel like I've known forever. One of the first families I found in the online community. 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. Always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. My son Benny was diagnosed with type one right before he turned two. That's 14 and a half years ago. Now. My husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting. And that is how you get the podcast.

I told you a couple of weeks ago, I had a meetup It was my first in person parent meetup since COVID. I used to do these things all the time. And I've done them for years, I run a large parenting Group here in the Charlotte, North Carolina area. And it felt so good to see people again and have these meetups. But what was amazing, and this is what I told you about is that two of the families, newer diagnosed already have their kids in clinical trials. And we live in Charlotte, which is not where a lot of these take place. So I was really impressed. And I think that obviously speaks to the access that we have. We have fabulous endocrinology groups. And we have really great outreach programs from JDRF here in our area. But I think it also speaks to the availability of these trials. These were not happening back when my son was diagnosed back in 2006. And I covered one of these trials though, and we're going to talk about today.

I talked about this briefly in an episode a few weeks back with Dr. Henry Anholt from prevention, the group behind the protect study. And here's what he told us at the time. If you missed that episode, I will link it up. But in a nutshell, the protect study is involving about 300 children and adolescents. They're in clinics across the US, Canada and Europe, you have to be eight to 17 years old, you have to be diagnosed with Type One Diabetes in the previous six weeks. So as I said in the tea's it's really quick, you got to know you have it and get in here to the study really quickly. You have to be positive for one of five T1D auto antibodies, you have to produce a minimum of your own insulin, they do those two tests as part of the study. And then you need to be otherwise generally Healthy

Kids in the study are placed into one of two treatment groups, two thirds of the participants will get the actual medication here and 1/3 will be assigned to the placebo group. It's decided at random and the medication in this is decided at random and it is blinded which means nobody not your child, not you not the doctor will know what group you are in. And the medication is going to sound familiar it is teplizumab This is the medication that we've been talking about for several years. That is in many trials that is in front of the FDA right now, as a prevention for type 1 diabetes. It's been shown to prevent the onset for a couple of years. This is a little different, though, right? This is using teplizumab in kids who are already diagnosed, seeing if they get it right away. What happens. So the Lahners family was kind enough to talk to us about their experience here and I'm going to go ahead and sort of spoil the ending because I was amazed by this. Alex is Benny's age he is 16 He is not a small kid, and he is using about six units of insulin a day, a day a day. If you're at all familiar with teenagers, it just sounds absurd. We would love to say of course just from that that the city is a big success the medication works for Get Out Of course, you know, quick look, they don't even know if he was actually in the the part of the group that got that to close him up. He could have gotten the placebo and I guess be in a very long honeymoon be a really exceptional case. I don't know.

We will talk about it in just a moment. But first Diabetes Connections is brought to you By Gvoke Hypopen.  our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice. But a very low blood sugar can be very frightening. Which is why I'm so glad there's a different option for emergency glucagon Gvoke Hypopen pen is pre mixed and ready to go with no visible needle, you pull off the red cap and push the yellow end on to bare skin and hold it for five seconds. That's it, find out more go to Diabetes Connections dot com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon dot com slash risk.

Alex and Jeremy, welcome to the show. Thanks for joining me. Thanks for having us.

 

I'm really excited to learn more about your story. You know, it's it's interesting at the same age as my son, but very different circumstances before we get to the studies and to play the map and all that stuff. Jeremy, let me start with you. Tell me the diagnosis story. How did you know something was going on?

 

Jeremy Lahners  6:03

Well, it was a, it was a warm summer night almost almost a year ago. Now, we had noticed over the course of really a couple of weeks that Alex just was not feeling well. And he's always done kind of a good job of hiding some of his symptoms from us a little bit. And he had just not been feeling well. He was drinking a lot of water and was sleeping a lot. Probably the sleeping was the thing that we noticed more than anything. He just wanted to sleep all the time. Now, school had just ended maybe a week or two prior to this. And a lot of what we saw as symptoms we really chalked up to a teenage kid wanting to just be left alone. Now that school was done and wanting to sleep all the time. So we we sort of wrote a lot of stuff off, we did take him in because he had had indicated he had some symptoms kind of leading up to some of all of this. And our doctor at the time, based on the way that we described things really thought that it was allergies. And so we started allergy medicine, then the day before we took him to the hospital, we just noticed that he was really looking thin. And he's a wrestler, he has lost weight over the course of the many years that he's been wrestling and so we know what weight loss looks like for him. But this was very unusual weight loss. And so I actually asked him to weigh in that evening, and he had lost over the course of about a four week period he had lost about 30 pounds. And as 150 pound kid at the time, you know, losing 20% of your body masses is a lot. The next morning, he got up and he just he looked like a ghost you know, fail thin. And

 

Stacey Simms  7:53

Alex, do you remember how you felt?

 

Alex Lahners  7:56

I vividly remember all of this. I remember when it first started happening like that said I was drinking a ton of water. And it really just felt like my tongue was constantly sandpaper. And I would pour like, I pour water into my mouth and it would just wouldn't go away. And I was just drinking so much water. I think my water intake like quadrupled, or more. And it was really odd. I've never loved drinking water. But I think that was the first time I was like, Oh my gosh, give me all the water I can have.

 

Stacey Simms  8:29

What did you think when you got on the scale? I mean, 30 pounds is extreme. I

 

Alex Lahners  8:34

knew that I was losing weight. I knew that I'd lost weight and you know, every sickness you sometimes you just lose weight. But when I got on the scale, and I think I said I was at 134. And I had previously weighed in like 160 something. Yeah, I was that's not right. I remember weighing myself a second time, just to make sure. And it came up with the same number. And I was like, it's I went downstairs I told my dad I was like it says I'm 134. And we couldn't believe in I remember everyone like my mom, my dad and maybe someone else who was there. We were all just like really shocked at how much weight I had lost.

 

Jeremy Lahners  9:11

Like I said, the next morning he woke up and just look real thin. And so we took him to the ER, we kind of had decided that was that was the line where it just something was clearly off. We didn't know what it was. They ran all of their tests, and probably within 20 minutes or so they came back and said, we're not sure exactly what's going on. But by the way, your son is a diabetic that could Yeah, I mean it was it was very kind of in passing a little bit. And I remember, you know, this was all during COVID. So only one parent could be with him at the time. So I'm texting my wife, and I'm texting her I said they're saying that Alex has diabetes, and she says there's zero chance of that. Tell them to rerun tests because they have no idea Do what they're talking about. They came back in and said, Yeah, his blood sugar is at 588. And that's tremendously high. He's clearly diabetic, we think you should probably take care of this problem. They put us on an ambulance and drove us down to the pediatric hospital in Charlotte. And we spent three days in the ICU, and they were able to get his blood sugar recovered, of course. And it was just a massive, massive crash course in all things type 1 diabetes. At that point,

 

Stacey Simms  10:31

I didn't really have the opportunity often Alex to talk to you know, a newer diagnosed teenager who actually wants to talk about this stuff. I have to ask you, how difficult was it? I assume in the hospital, they made you do your own shots? And had you figure everything out? You know, what was that like? So give yourself the first injection.

 

Alex Lahners  10:48

Honestly, when you first get diagnosed, or at least when I got first diagnosed, I got really lucky because I have some people around me who I had known previously, who were type one diabetic, I got extremely lucky with having resources to reach out to and people to talk to, I have always released previously to diabetes, I had always hated needles, shots, I hated everything. But obviously, getting diagnosed with diabetes, you kind of have to learn to get over it. I just kind of put it in my arm. And I was like, this is going to be a new reality for me, and I just accepted it. And I never I don't think I remember feeling any sort of way with how the injection felt or how it made me feel. I think it was just kind of like a, this is how it's gonna be.

 

Stacey Simms  11:30

So you leave the hospital, you go back to trying to figure out how to do life now with diabetes. But your experience took a turn in that you pretty quickly got involved in a pretty cool clinical trial. Jeremy, how did you find out about the protect study?

 

Jeremy Lahners  11:46

Well, we sort of jumped headfirst into things, the nurses at the hospital were outstanding and, and gave us all the wonderful material on on jdrf, I reached out to our local jdrf contact to submit Alex's paperwork and material and whatnot. And, of course, that put us on the mailing list of the various jdrf webinars and things that are going on and we follow it on Facebook, join the Charlotte type 1 diabetes parents group, all those types of things, we sort of dove headfirst into all of those resources. Within maybe a week or so I happened to see a webinar about that was upcoming about this protect study. And we thought, well, we should we should at least listen in we we weren't really convinced that it was a great idea at the time. But we figured we're in this now we need to at least listen to what's happening in the space a little bit and try to participate. You know, it was hard enough, sort of coming to grips with all the things coming at us. But we really did want to try to educate ourselves on on the various medical things that were going on. So that was what led us up to listening to the the details of the protect study.

 

Stacey Simms  13:04

So what was involved? Tell me, you know, we haven't been involved in a clinical trial, much to my son's regret. He's always pushing me to get him in and we just haven't been successful. After all these years, I keep trying. So can you share with us a little bit of the process? Because it's not a local study?

 

Right back to Jeremy, but first Diabetes Connections is brought to you by Dario health. And one of the things that makes diabetes management difficult for us that is very annoying to me and to Benny. It isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running at a 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 my daario.com forward slash diabetes dash connections. Now back to Jeremy as he starts to take us into their study experience. I had asked him about whether there was a local site it wasn't a local study.

 

Jeremy Lahners  14:20

It's not it is a nationwide study. However, the nearest facilities to us were far from local. I think our nearest facility is technically Atlanta. But we had the opportunity during the the webinar they were interviewing Dr. Haller out of the University of Florida. And he was describing this protect study on to plumas AB and we thought it was a good study for Alex the sort of entry criteria for the study. They were accepting children kids under 17 years if I if I remember correctly, who either Were pre diagnosis or had been diagnosed within the last 45 days. So that immediately qualified us, I reached out during the webinar using chat tools inside the zoom to say, My son was just diagnosed, we'd like to learn more. And Dr. Haller reached out to us via email. The next day, we had a zoom call with just him a day or two later. And he talked to us in a lot more detail about how the study goes and and provided some options for us. So that was all the sort of pre work if you will, from there, we did take a day or two and, and we sat down as a family and talked about whether it, it made sense for Alex to participate. Both my wife and I had participated in some medical research studies. When we were in college, there was a paid program at our college, that you could take participation in some of those programs. So we had a background in it. And I think we were both pretty encouraging of Alex to participate in in the study. But, you know, Alex was 15, at the time, and we felt he was old enough and mature enough that he should really make the decision. And so we didn't leave it up to him, maybe with some heavy encouragement. But nonetheless, it was his call at the end of the day. And we would have supported that

 

Stacey Simms  16:27

Alex had to make the decision. What were you thinking?

 

Alex Lahners  16:29

So the decision was really, honestly hard for me at the time, I was still trying to get over like, just recently being diagnosed and trying to get everything under control, just to understand what was happening to my body. Ultimately, it boiled down to not only had mom and dad done, I guess, trial before they've done studies before, but I don't think anyone who has type 1 diabetes would tell you, oh, yeah, you should go out and get type 1 diabetes. It just it sucks. It's, it really is not fun. I thought if I would have had someone else 50 years ago, been able to prevent or tell me that I was going to get diabetes and have a drug to prevent the onset of diabetes, I would have taken it in a heartbeat, I would have done whatever it was. And I know that I don't want future people getting diabetes, and anyone I knew to get diabetes. So I ultimately it was like, I'm not just gonna do this for myself. I want to do this for other people who are future in the future going to be diagnosed or are going to be diagnosed later. I guess.

 

Stacey Simms  17:36

That's really a wonderful sentiment. I mean, Jeremy, I don't need to tell you this. Alex, you're, you know, you're so well spoken and really mature about all of this. So thank you very much for for sharing that. We can be goofy later, I'm sure. So Jeremy, you fill out the forms or do whatever you need to do what happened in this trial. This is not a survey, this is a go to Florida, go to the hospital, get a treatment, what happens?

 

Jeremy Lahners  17:59

We went down to Florida a couple days early so that Alex could get a COVID test. I think he was the first person in our family to get one of the touch your brain nose swabs. He really enjoyed that, I'm sure. And then we started the study. The study was sorry, the the first part of the infusion was 12 straight days of infusion. Generally, it was anywhere from three to four hours per day. We typically did that first thing in the morning. And thankfully, number one, Alex was at a school so it didn't interrupt school. Number two, my job is flexible enough that I was able to fulfill my work duties in the afternoons and evenings. So it really all worked out for us very much a perfect storm of good, if you will. But for 12 days straight we did the study, the infusion, and that first 12 days was probably the roughest simply because going in you don't know. It's a blind study. So you don't know if you're getting the drug or not. You could be getting the placebo. So there's a lot of trepidation and a lot of do I really want to go through all of this pain multiple times through if all I'm getting is the placebo? We really had a lot of conversation about, you know, what's this going to look like in six months or a year? That was ultimately the study we did, because of the nature of this drug. It is an immunosuppressive. So we did have to quarantine especially again, given it was the COVID times we really had the quarantine. We spent a lot of time in the hotel room just hanging out and like he does Alex slept a lot. That was the two weeks that we spend down there.

 

Stacey Simms  19:49

Oh, it's was it painful at all? I mean, is it just a blessing? Just I mean, is it just an IV and the pain is just sometimes when you get an IV put in that hurts, or is there more to it

 

Alex Lahners  19:59

honestly It's really just the IV, they do a great job of like, counting you down, like, they'll be like, Alright, we're gonna put dive in, you know, take a breath 123, and then they'll put it in, I have never had problems with it hurting too much. I still like clench my fist and my jaw when they put it in, because you know, I don't like needles, but it only lasts for maybe 10 seconds at the most. And it is really fast. And once it's in, everything else is super easy. They tape it to your arm, so it doesn't move, and there's no chance of it being pulled out. And they're just super careful when either the placebo or the supplements AB is injected into you. It just felt like there was cold, I would say water running through my body, and you get this salty taste in your mouth. But besides that, that's all I can notice.

 

Stacey Simms  20:52

Well, and I know. And Alex, as you mentioned, they they're very careful. They're very good. And Jeremy, when you and I spoke previously, you really said that this was a top notch staff, let me just give you a moment to give them the kudos that you had already mentioned to me off air.

 

Jeremy Lahners  21:06

Sure. I can't go into the details of how good a crew they really are. As much as I love our primary endocrinologist, she does a wonderful job with us here in Charlotte, having the opportunity to spend 12 straight days with an active scientist of the study of diabetes, good or bad than sort of being locked in a room with us for a period of time while they administered the drug to Alex, it really gave us an opportunity as a newly diagnosed type one family to ask a lot of questions for, like I said, 12 days straight. We had access to Dr. Haller, and the other doctors plus all of their nurses and assistants, some of whom also have type 1 diabetes. And we were just able to ask all of the questions that are just reeling around in our heads. And all of them had been through different experiences, or had treated patients with different experiences. And they were just able to answer so so many questions, so many of the fears that we had as parents and I think fears on Alex's behalf as being a newly diagnosed patient were so easily allayed as a result of just being able to spend so much quality time with such good individuals.

 

Stacey Simms  22:33

What happened after this, you you came home? I mean, I feel like I know the ending to the story. And you're spoiling a little bit in my introduction in that it doesn't seem like you've got the placebo, it seems like things are working out, let's just say very differently for Alex than for a typical teenager, in the first year of his diabetes. Is that safe to say

 

Jeremy Lahners  22:53

it is? And admittedly we don't know for sure. One of the disadvantages of participating in the study when we did was there's still that honeymoon period that many kids go through and and so a lot of what we experienced very early on was still questioning, are we just seeing the effects of honeymoon? Or are we seeing the effects of this study drug because his his insulin requirements have been very, very low. That really just continued, we would go back to Florida every four to six weeks, and do blood draws and just a quick one day blood draw to test absorption. So no more drug was ever injected. In fact, his next injection is coming up in about six weeks. But again, he just he seemed to stay in what we thought as new parents to be the the honeymoon period. And even today, nearly a year later, that's still where we're at, we're still kind of in this wonderful period where his insulin requirements are insanely low. From what I've heard from other parents.

 

Stacey Simms  24:02

Let's talk about that. Give me an example.

 

Alex Lahners  24:05

I currently have heard from my primary endocrinologist that a kid my size and just my age would probably take around 60 to 80 units a day, somewhere around there. I think I am currently sitting at total daily usage of like 6.4 units a day. So that's, you know, a 10th

 

Stacey Simms  24:28

I don't want to get too personal. But would you mind giving us approximate weight and height? I mean, you're 16 years?

 

Alex Lahners  24:35

Absolutely. I'm 16 I'm probably around 178 pounds right now and I'm about 510. So generally speaking, I should be taking substantial more amounts of insulin than I am not tiny, though. He's got a small kid.

 

Stacey Simms  24:52

I'm not even sure what to ask Jeremy and Alex because you without knowing the typical experience. It's I'm not quite sure we know What to ask you in terms I keep, I put it this way. And I'm stuttering around because I can't ask you what's the difference? Because you? Yeah, you don't know. I mean, my son is 16. He's 215 and almost six feet tall, which is great for wrestlers. We know everything about your bodies. We know how big you are, we know tall you are, when you weigh on a daily basis, but you know, and he probably uses definitely 80 units of insulin a day. I mean, it's, it's just remarkable. So how do you treat it? Do you I know you were an insulin pump? Can you use it? I mean,

 

Alex Lahners  25:30

oh, I do use my insulin pump. But the good thing about my insulin pump is and especially just the T slim in general, is it's all programmable. And you can set it up by yourself. So I have to set my insulin crazy low. And I have to make these crazy schedules. Because when I first got diagnosed, I think I was on a one to five, ratio of units to carbs. And then I hit my honeymoon phase. And my endo backed it off to one to 15. And I was like, Oh, yeah, this is awesome. And I remember I went out and ate like a fast food burger. And I took like, obviously, like a third of the insulin that I've normally taken, I was like, This is great. And then as time progressed, it just kept needing to be moved back, because I would take too much insulin, and I would get low. And I was constantly fighting lows. And I still have that problem today. So there was a time where I was at a one to 100 carb ratio. And I am currently at a one to add carb ratio. And I have to space out when my pump gives me insulin, because if it gives me insulin, like a correction dose throughout the entire day, the amount of insulin that I need to correct is so low that my pump won't let me put it in. So I have to default to the smallest amount which is like point 100 units of insulin in order to correction me down to where I need to be. That's your that's your basal rate. That's my basal. Yeah, so

 

Jeremy Lahners  27:00

his basal is point one units. And I think right now you're on every other hour. Yeah, every other hour. So

 

Stacey Simms  27:07

every other hours zero. So you go like a point one and then a 0.0. Yeah, that's amazing. I don't want to get too far ahead of everything here. And Alex, I hope this continues for you, you know, indefinitely. But Jeremy, what is the goal of this study to see kind of how long they can extend this honeymoon or keep these insulin uses low? Or, you know, what is the hope of they expressed it to you? Or do you kind of just take it, you know, month by month,

 

Jeremy Lahners  27:34

what they described to us very early on was that some of their participants, were seeing this honeymoon period effectively extend for two to three, sometimes even up to four years. That was really kind of the goal. When we started, as we look at where Alex was in his sort of mature ation process. We sort of thought, you know, if Alex could get through high school, and maybe well into college, still on the honeymoon period, that would be a wonderful experience for him, he'd still have the opportunity to do all of the sort of traditional things that you think of without necessarily significantly having to worry about his diagnosis. That was our mentality going in. I've heard suggestions that possibly there's maybe kind of a continuing dose that you can get over the course of, you know, follow on years. But that wasn't part of the study or anything that we did,

 

Stacey Simms  28:32

they are still looking for about 40 people for this study. This is for new onset, folks with type one. What would you say if somebody's listening, they found the podcast pretty quickly. And they're debating, is this something that you all would do again, because you said it. I mean, there's like I said, it's not as easy as you stay home and take a pill this may involve travel is definitely involves two weeks time and a lot of pokes.

 

Jeremy Lahners  28:57

Yeah, I mean, looking back, if given the opportunity, again, I would, we would jump on it in a heartbeat. I would say anybody who has the opportunity, and the ability to take the time to do this study, not just the drug itself, but again, the time with the doctors, the combination of those two things is nearly invaluable. So to me that there's no way that that I would turn down that experience again, even if Alex would have gotten the placebo. I mean, ultimately, even if he would have gotten the placebo, he was still gonna end up in the same condition just sooner. So at the very least the time that we got to spend with the doctors has paid for itself trillions of times over. I guess maybe the other thing that's that's worth noting is these are paid studies. So Alex got a little bit of money to spend on his car and turning 16 he he got a little bit of money to spend towards that mostly on gas. So there is some monetary value to it. As well, that's that's worth mentioning. But that wasn't our purpose by any means. It was really the drug and the opportunity to spend time with the doctors would be my two key selling points.

 

Stacey Simms  30:12

You don't have to go on the record with this question. But can I ask you how much it paid?

 

Jeremy Lahners  30:17

It paid? I believe it was right in the neighborhood of $75 per day of visit.

 

Stacey Simms  30:25

I mean, it wasn't $5,000 No, no, I want to be clear when people are you know, we're thinking about it. I wish Yeah. No doubt. It's a lot of gas.

 

Jeremy Lahners  30:34

They'll spend it. But But yes, no, it's not quite that much. But, I mean, hey, you know, absolutely, yeah. So we go back the end of July. And that will be our next two week visit. We've had a couple of visits since then, about every six weeks or so. We take a one day trip to Florida, just to do checkups. But otherwise, this will be the next big one. And then I think from there, if I remember correctly, I think our next visit is six months afterwards.

 

Stacey Simms  31:09

All right, Alex, I have two non study related questions for you. Absolutely. How do you keep your gear on when you wrestled? What do you do with your diabetes

 

Alex Lahners  31:18

stuff? Obviously, that was a really big thing. When I first got diagnosed and learning that you're going to have all this stuff stuck to the side of you, it was like, people are going to grab that when I wrestle. And especially at a high school level, at a varsity level, there is no holding back. If you have a knee brace or anything, people are just going to attack that. That's what I've learned throughout the 12 or 13 years that I've been wrestling, I just was like really worried at the start. But I learned that if I was able to at least keep it close, and you know, tight enough in and you know, obviously you wrestled well, and got off the mat sooner than you wouldn't have any problems. The way that I wrestle with my stuff is I have my Dexcom that's always on and never take that off for any reason. Never even take the transmitter out unless I'm changing the transmitter or changing my sight. For my T slim though, I just disconnected it and I'd put a stop in, I learned that the adhesive is just as good as the Dexcom adhesive. And if I kept it more on my torso every once in a while I'd put it on my legs. But if I kept it more on my torso, because the singlets are just so tight, it just kind of glues everything to you. And I never really had a problem, I think the biggest part was locations as to where you would want to put your stuff. Obviously, if I put it on like the back of my arm, that's a more high risk area, because that's a very frequent place for people to grab while you're wrestling. So I would put it on the upper part of my thigh, kind of closer to my groin or upper groin, and I would just put it in there. And that's where I would leave it. When I put my singlet on, obviously, I'd pull it up. But a big problem for me was writing like the singlet would write up my leg and I didn't want it to pull off. So sometimes I would just pull my singlet just barely above or right on the infusion site so that I could just keep it there. And if it did pull up, it wouldn't pull my site off.

 

Stacey Simms  33:20

Do you use anything to wrap it but or anything or everything just kind of sticks, okay, because of your locations. Generally,

 

Alex Lahners  33:26

I only use like over patches, I use like two Dexcom ones. And I think we had some like aftermarket ones, whenever the Dexcom ones would run out, unless it was like on my arm or something of the sorts, I wouldn't wrap it. But if it was on my arm, or I just didn't have any other choice, and it was in a very vulnerable area where I felt like it was about to come off. I would always wrap it with just some like simple athletic gauze. And then I put some athletic tape around it. And that always seemed to hold it. I also have a little like sleeve that I use for swimming and I guess for sometimes athletics, and I just would slip that on over it. It was like a dry fit sleeve. And that worked perfectly to

 

Jeremy Lahners  34:08

we did wrap your leg the first couple of times, but really, we found it wasn't necessary. So we sort of stopped doing that by the end of the season.

 

Stacey Simms  34:17

My second question for you was telling me about the socks.

 

Alex Lahners  34:21

So with Dr. Haller, I learned that we have a very similar passion for extremely crazy socks, because I wrestle I love wearing weird socks because there's only two things that there's three things that you can really change to differentiate yourself from the rest of everyone. It's your singlet, your shoes and your socks. When you're wrestling on a team or just for your school. There's set singlets so the main biggest thing, you can't get to change, you don't get to change it all right. And for shoes, there are some flashy shoes but really sometimes they get extremely expensive if you're going to customize them there. Similar to basketball shoes, so I decided the cheaper option, and the only one that I really had left was socks. So I started a while ago, just getting tons of weird socks and funny socks. I have, you know, pizza socks. Right now I'm wearing these weird math socks that say five out of four people are bad at math. Stuff of the sorts, I walked into the study for this two week study. And on the first day, I met with Dr. Haller, and he noticed my socks, I don't remember what socks I was wearing. Exactly. But he also showed me that he was wearing some like, funny diabetes socks. And from then on, we've just had this competition to outdo each other, even when he's not in the room physically. Like with me, like if there's a different endocrinologist in that day, he will send them pictures of his socks in order to show me to try and one up me, but I like to think that I'm ahead. And if he's listening, I want him to know I will be winning the SOC battle.

 

Stacey Simms  36:01

Before he let you go. Jeremy, you have said and I forgot to ask you have said that. While he uses so little insulin you do? I guess. I don't know. I don't know if I'm struggling because I was gonna say this is a downside, I guess it is, you guys have still struggled with low blood sugars Is that something that you are still dealing with?

 

Jeremy Lahners  36:20

It is the struggle that we run into right now is again, because his settings are so low, right now, it's very easy for him to go low. We don't struggle with highs too much at all. And even when he does go a little bit high, he comes back down very quickly. But seemingly every day, I would say almost every day. He has a slight low episode. And and even overnight, you know, we'll we'll have to wake him up sometimes and say, Hey, buddy, you're, you're low, you know, eat some sugar. And he'll groan at us and tell us that we're wrong. But nonetheless, that is probably the one downside that we have seen. And And listen, we'll take that downside all day long. But that has been probably the one downside that we've struggled with a bit.

 

Stacey Simms  37:09

Alex and Jeremy, thank you so much for joining me, it's great to talk to you it was really interesting was really fun. And, you know, thanks for spending so much time with me and my listeners. Thank you, Stacey, this has been great. And I really should say thank you as well for doing the study. These studies are so important. And Alex, as you said earlier in the interview, people who take the time to do this aren't necessarily helping themselves, but they are helping the people yet to come. So I would be remiss if I wasn't thanking you and thanking your family for taking the time and the effort in going through all of this. So I think I speak for all of my listeners when I say thank you so much for taking part in this study. It's our pleasure.

 

You're listening to Diabetes Connections with Stacey Simms.

Much More information at Diabetes connections.com or in the show notes wherever you are listening. And they are still looking for kids for this study. So I will link up more information. If you know someone who has just been diagnosed if somebody is maybe going through trial net or the jdrf testing for you know a sibling or another family member has type one, and they want to find out if they haven't, this is the kind of thing where they have to get in so early, it's really hard to find people. So they are still recruiting. It was amazing to talk to this family and find out what their experience was like because boy, 16 years old, and using that little insulin really just makes you sit up a little bit straighter. I mean, that would make a very big difference. Gosh, all right, much more to come. And again, you can always go to the website or show notes to find the links, find the transcription and share this with a friends because you never know who might know somebody who could be in the trial

coming up. We've got Tell me something good. But first Diabetes Connections is brought to you by Dexcom. And I get a lot of questions about Dexcom coverage for people on Medicare. And why not it's not as though you stopped needing a CGM, the minute you turn 65 The good news is that the Dexcom g six continuous glucose monitoring system is covered for Medicare patients who meet the coverage criteria. If you have either type one or type two diabetes and intensively managed insulin, you may be covered. To find out more about what that means that if you qualify check out dexcom.com backslash g six dash Medicare. I will link that up with this episode. You don't have to write it down. You're going to want to talk to your doctor and you may even be able to get your Dexcom supplies at the pharmacy saving time and money learn more again it's dexcom.com backslash g six dash Medicare.

 

In Tell me something good this week is scrolling through Facebook as one does and a bunch of graduation pictures caught my eye now this time of year of course there's so many beautiful prom and graduation pictures and I'm so happy for all the kids and you know as my kids have And older we've grown up with so many people who are now sharing their beautiful graduations and prom pictures. But I had to stop because Lorraine Sisto posted pictures of Caleb. Now, those of you who had kids diagnosed around the same time as I did or earlier, or kids were diagnosed like 2006 2007. During the heyday of blogging, it really just started. There weren't that many, but it was growing. And man in the next couple of years, there were hundreds of diabetes blogs that so many of us met each other. And now of course, there's 1000s of Instagram accounts and social media stuff, and it's changed and it's still great to connect. But there are some moms and I think you know, who you are, that I connected with in the community and we may have never met I never met Lorraine in person. And as the kids have gotten older, we have kind of communicated to online a lot less. But I have basically watched these kids grow up and Caleb her son was diagnosed just one month after Benny. Benny was diagnosed in December of 2006. Caleb was diagnosed I think he said, He's obviously a year or two older since he just graduated high school, but he was diagnosed in January of 2007. So we have been in this together for a long time. And I have watched her post these pictures of this fantastic kid and sharing so much information. And so I will link up her blog she hasn't written in a while. But if you have a small child, and you want to see a real go getter of a kid who met Nick Jonas, they just did so many wonderful things. And she shared a lot of great information over the years that's still really relevant.

But I'm talking too much because the reason I wanted to share all this is because it Caleb's graduation picture, he graduated as the valedictorian of his class, holy cow. He's going to school for engineering, he is strongly considering biomedical to research type one, I mean, just fantastic. So congratulations, Caleb, congratulations, Lorraine and to your whole family. He's got a brother and a sister and she shared about them as well. I think it's really important to include the siblings too, but so many fabulous graduation stories this year. And if you've ever read this is Caleb or you want to look back on what blogging was all about back in the heyday of diabetes blogging, I will link that up as well.

If you have a Tell me something good story, feel free to reach out I might stumble upon on on Facebook again. But you can always find me Stacy at Diabetes connections.com or reach out and our Facebook group Diabetes Connections, the group. Before I let you go, a couple of quick notes on the next couple of weeks are gonna be really interesting on the show, late June, early July, I have some late breaking types of interviews. So stay tuned on social, I'm gonna be posting and Diabetes Connections, the group on Facebook, with the behind the scenes stuff, I don't believe there's gonna be any scheduled disruptions. But you never know. So stay tuned on that some of the stuff is embargoed. I can't talk about it. It's technology news, as you can imagine, and I just want to get it to you as quickly as possible. podcasting is tough that way. It's not exactly an immediate medium, you know, like radio, but I do my best. So I'll keep you posted on that.

I will be friends for life. That is July 7 through the 10th. And I'm always excited to go and this year more than ever, just because this is the first for me diabetes conference that I'm going to be going to in person since COVID. I cannot wait and I'm doing a new presentation called reframe your diabetes parenting brain. I will be sharing more about that in the weeks to come. But basically, I do this online anyway, do this in my local group too. When somebody posts mom fail and talks about what they did and how they messed up their kids diabetes, I try to reframe it and show them how they really did a good thing. I mean, he wrote a whole book about it, so why not? And then, as I'm taping this episode, we are getting Benny ready for his trip to Israel. I have talked about this on and off for the last year on this show. Many of you know how nervous I am about this. As you listen as this episode goes live, he has gone he is away he has started his trip. And I don't know that I'm going to get too much sleep. Because while he goes away to camp every summer for a month, and while he's with fabulous people that I trust, he's not with us and He is very far away. So I'm probably not going to speak about it or post about it very much because many of you know me, I'm very superstitious, but I cannot wait till after when he is home and after I hug him. I will see if he wants to talk about how it went diabetes wise and hopefully we can report back. Oh my goodness, I'm you guys know, I'm just I'm so nervous. I'm so excited for him. But this is really hard for me. All right.

Thank you, as always to my editor, John Bukenas from audio editing solutions. Thank you so much for listening. We've got Diabetes Connections in the news every Wednesday 430 live on Facebook and then here on the podcast on Fridays. So hopefully I'll see you back here for that until then be kind to yourself.

 

Benny  44:52

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

Jun 18, 2021

It's "In the News..." your weekly wrap up of diabetes news and headlines. This week:

⭐Medicare move on CGM testing requirements

⭐New study on Eversense, implantable CGM
⭐One sport changes its rules for BG monitoring
⭐Diabetes when deaf - new research to help
⭐Women leadership gap in diabetes
Join me live on Facebook each Wednesday at 4:30pm EDT

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

Join the Diabetes Connections Facebook Group!

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Episode Transcription below: 

 

Hello and welcome to Diabetes Connections In the News! I’m so glad you’re here! I’m Stacey Simms and each week I’ll share the top diabetes stories and headlines of the past seven days. Whether you’re joining me live on Facebook or watching or listening after, I’m here to get you up to speed quickly on what’s happening with diabetes technology, research, and our community. Remember, these are headlines and summaries – so to learn more, I will put all of the sources and links in the Facebook comments and in the show notes at d-c dot com.
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In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know Stuff”
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here’s what’s In The News this week…
Medicare does away with a big barrier to CGM use: you no longer have to show you’re testing four times a day. Dexcom’s G6 has been FDA approved for insulin dosing without fingerstick calibration and, along with the American Diabetes Association and other groups, has been pushing for this change for a long time. It becomes official on July 18th.
https://www.cms.gov/medicare-coverage-database/details/lcd-details.aspx?lcdid=33822&ver=31&fbclid=IwAR1jiXFTy3LqdEoSnkGncAkNKpCSVzINPo-q3KZa4DGMgJiKi7pDgEr0eoI
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New study all about Eversense – this is the first and only long-term, implantable CGM. The PROMISE study looked at the accuracy and safety of their 180 day system with reduced calibrations. The MARD – which measures accuracy – was 8.5 to 9.1 which puts it in line with other CGMs available right now. The rest of the study showed it safe and effective. In October 2020, Senseonics asked the FDA to approve the 180-day wear version, and that submission remains. They are also working on a year-long version of this system.
https://www.businesswire.com/news/home/20210603005866/en/Senseonics-Announces-Results-of-the-PROMISE-Study-Demonstrating-Strong-Accuracy-of-180-Day-CGM-Sensor

Really interesting story out of cycling this week. The UCI - the Union Cycliste Internationale - is the worldwide governing body. They changed a few rules recently, including one banning the in-competition use of devices that capture information on metabolic values including, but not limited to glucose. Elite athletes and a lot of influencers are starting to wear CGMs even without diabetes
– one company “Super-sapiens” promises easier energy management for athletes by doing so. Super-sapiens is the basically Abbot Libre with different marketing. They’ve been expanding the number of professional cycling teams they’re working with but this ruling may change that.
People with diabetes – who use CGM for medical reasons – are exempt from the rule change. By the way, in the opposite direction, the Ironman triathlon, has Supersapiens as an official supplier. We are just at the start of this kind of thing – it will be very interesting to watch.
https://road.cc/content/tech-news/uci-bans-blood-glucose-monitoring-devices-races-283891
mental health:
https://www.endocrinologyadvisor.com/home/topics/diabetes/type-1-diabetes/psychoeducational-program-minds-ohp-welcomed-by-adults-with-t1d/
Great article from Beyond Type 1… looking at health care disparities – and what can be done – for people with diabetes who are deaf. Dr. Michelle Litchman has six family members who are deaf and just one of the challenges this community faces is that sign language interpreters are not always offered or available. And when they are, they don’t always know how to communicate health information.
Over the next three years, Litchman will design diabetes programs with language in mind as part of a fellowship grant she’s been awarded.
https://beyondtype1.org/diabetes-program-accessibility/
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You might have heard about this big new study from Johns Hopkins saying that people with diabetes in the U.S. have become significantly less successful at controlling blood sugar. IMO it’s not being reported completely. Here’s the deal: These researchers used a survey that tracks 5,000 individuals annually for many health issues. Between 1992 and 2002, 44% of the study sample had an A1C under 7%.
From 2007 to 2010, 57% had an A1C under 7
From 2015 to 2018, that dropped to 50%.
Now.. that’s not great.. but it’s still an improvement from the initial starting point. And there was no published info about why. The price of insulin has only gone up since the beginning of this study and we have seen many other pieces showing that one in four people with diabetes in the US rations insulin.
So I’d be careful about extrapolating too much about behavior or food from this study.
https://www.medicalnewstoday.com/articles/diabetes-blood-sugar-control-is-getting-worse-for-us-adults
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Up next.. making a pancreas with a printer?
quick break – want to tell you about one of our great sponsors who helps make Diabetes Connections possible.
● Inside the Breakthrough is a podcast that mixes historical wisdom with modern insight – it’s a science show that’s also entertaining. I love it. They cover everything from snake oil to the actual Eureka moment. There’s even an episode about the guy who discovered the importance of hand washing in hospitals and how no one believed him. And this actually relates to diabetes! Listen to Inside the Breakthrough wherever you listen to podcasts..
Back to the news…
a new paper is out about the gap in women’s leadership in diabetes. These researchers say no one has quantified the percentage of women in leadership roles in our community. What they found? Not surprising – women are very well represented in terms of membership in professional communities and very much under-represented in leadership positions, grants and awards. They call for dropping barriers and creating environments that get more women in involved.
https://www.docwirenews.com/abstracts/journal-abstracts/the-womens-leadership-gap-in-diabetes-a-call-for-equity-and-excellence/
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And finally, A 3-D printing company is hoping to make diabetes research a little easier – by printing a living model of the human pancreas.
Readily-3D’s novel technology is being deployed within the EU-funded Enlight project and is reportedly capable of 3D printing a biological tissue containing human stem cells in just 30 seconds.
The Aim of the Enlight project is to develop the living pancreas model for the testing of new diabetes medications to improve both diagnosis and treatment.
https://3dprintingindustry.com/news/readily3d-develops-3d-bioprinted-mini-pancreas-for-diabetes-drug-testing-191440/
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That’s Diabetes Connections – In the News. If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com.
Please join me wherever you get podcasts for our next episode -Tuesday – we’re talking to a family taking part in the PROTECT trial – this is a study hoping to slow down or even stop diabetes in the newly diagnosed. This kid is my son’s age – 16 – he’s one year into diagnosis and he uses about 6 units of insulin a day. And the episode that’s out right now is an update from Beta Bionics all about the iLet insulin pump.
Thanks and I’ll see you soon

Jun 15, 2021

We are very excited to catch up with the folks from Beta Bionics! Their fully automated bionic pancreas is called the iLet. They are getting closer to submitting to the US FDA and were able to give us an update on some of the most anticipated features.

Kate Farnsworth is a consultant for Beta Bionics currently acting as Digital Marketing and Communications Manager. She walks us through what makes the iLet a very different insulin pump, including: a system that only needs the user's weight (no basal rates or carb ratios), software that will learn from the user and make adjustments, how the system charges, waterproof status and much more. All dependent on FDA approval.

Kate's daughter was diagnosed at age 8 and we first spoke in July of 2015 about Nightscout. 

Past episode with Beta Bionics:

Ed Damiano in April 2016

Ed Damiano in May 2017

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 below

 

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.

This is Diabetes Connections with Stacey Simms.

This week, catching up with Beta Bionics . Their fully automated bionic pancreas, called the iLet has some new features not available in existing devices. And that's helped to ease the burden of diabetes in new ways.

Kate Farnsworth  0:33

Working for companies like Beta Bionics  give us the opportunity to reach a much wider group of people and really gives us the opportunity because we are a public benefit company to try and engage those people that aren't being engaged currently with the tools that are available.

 

Stacey Simms  1:02

That's Kate Farnsworth a well known name from the DIY community. Now with Beta Bionics . She'll give us the latest news on the iLet’s development and share some personal stories of her family's journey with type one.

Also this week, a big anniversary for the show, as well as for some of our listeners. 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, always so glad to have you on, we aim to educate and inspire about diabetes with a focus on people who use insulin, guys, it has been six years of Diabetes Connections this month, work six years I started in June of 2015. It kind of snuck up on me to be honest with you. I had started the show in May of 2015, actually, but it was just audio that I put on my blog. We didn't get accepted into Apple podcasts and all the rest until June. So that's where I'm marking it from. I had been working on it for months and months. And I kind of wish I had started earlier. But hey, I'm thrilled with how it's gone. Almost 400 episodes now, so many of you wonderful listeners who I hear from all the time. Thank you so much for sticking with me. And if you could just do me a favor, the best thing you could do, I'm not doing much to celebrate this anniversary, I'm not doing a big thing on social or anything like that. But if you could do me a favor, just share the show, share this episode, share whatever episode you like, or just share a link to Diabetes connections.com on your social media, you can put it on your own timeline. Better yet share it in the diabetes Facebook group. It really does help get the word out. You can leave a review that's always fun, but sharing the show itself or telling somebody about showing them even to this day, how to listen to a podcast really goes a long way. So will we be here for another six years? I don't know, man. I hope so. I'm not slowing down. I'm really excited about where we're going. And I love talking to people like my guest this week.

Alright, let's get into it. My guest is Kate Farnsworth. She's a consultant for Beta Bionics currently acting as Digital Marketing and Communications Manager. Many of you know Kate from the DIY community. Her daughter was diagnosed at age eight, and we actually first spoke she was on the podcast in July of 2015. Just after we got started, we talk then about Nightscout she helped so many people get watchfaces set up back in the day among so many other things that she did. Now she helps run the Facebook loop to group with 10s of 1000s of members. Now the iLet, as many of you know has been one of the most heavily watched and anticipated devices in the diabetes space. First human testing was done in 2008. At Damiano the company founder has kept everybody up to speed over the years he has been very public showing the progress in presentations at conferences, and he's been on the show a couple of times himself, I will pick up those older episodes. for newer listeners. The iLet is meant to be a dual chambered pump. That means it will hold and infuse insulin and glucagon to help achieve better time in range.

Just so we're all clear. Putting glucagon into your body isn't like eating sugar or infusing quick acting sugar like glucose or dextrose. Very simply put, injecting glucagon or infusing glucagon stimulates the liver to convert its stored glycogen into glucose which it can then release into the body. The eyelid is being designed with two cartridges and two infusion sets one each for the insulin and glucagon. But the plan right now is to move forward with just the insulin so just one chamber like a quote regular insulin pump for now. I know that was a lot but after Kate and I finished the interview, we realized that a quick description like that and some information about glucagon because I still explain it I still have a lot of people who are newer in the community who don't quite understand. So I really hope that that helped.

Okay, a lot more in just a moment but first diabetes These connections is brought to you by Dario health. And 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'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 dario.com forward slash Diabetes Connections.

Kate, thanks, thank you so much for joining me, Boy, am I excited to talk to you.

 

I'm so happy to be here. Before we jump in, my listeners know that I promised this year that in 2021, I was gonna be very heavy on technology. There's so much in front of the FDA, there's so much going into pivotal trials and heading to the FDA that I thought it would be so easy to do all of these interviews. But I realized as we got further along that the very timing of all of this makes it very difficult for the companies to actually come on and share a lot of information because you are limited in what you can say and understandably so. So before we even get started. I know you have a disclaimer that you're probably going to bring out a couple of times during the interview. But why don't you go ahead and say that now.

 

Kate Farnsworth  6:21

Thanks, Stacey. So the iLet bionic pancreas is an investigational device and it's limited by federal or United States law to investigational use is not available for sale

 

Stacey Simms  6:34

as we go forward. And as you listen, I should also let you know that I've given Kate the opportunity as I did when I talked to Howard look from tide pool or you know anybody else who is in this phase of their device or technology, the opportunity to kind of let me know when I've crossed the line. So I may ask a question that you can't answer, Kate. But um, I think we all we kind of understand where we are. So I appreciate that. All right. Having said that, give us the lay of the land, if you can, where is the iLet? In terms of development, let's go high level as far as we can right now.

 

Kate Farnsworth  7:07

Okay, so Beta Bionics  is the company behind the iLet. And we're really different company because we're a certified B Corporation and the public benefit corporation. And that means our company is measured by an independent resource based on how our company's operations and business model impacts our workers, our community, our environment and our customers from our supply chain and input materials to our charitable giving an employee benefits. B Corp certification proves our business meet the highest standards of verified performance. For Beta Bionics . That means the people with diabetes and their loved ones have a seat at the table in our decision making. In that context that we're working to bring the commercial version of the iLet to market. There is currently a pivotal clinical trial testing the eyelid and people living with type 1 diabetes ages six enough. This trial is large and involves 17 different clinical trials sites across the United States. results from this clinical trial will potentially support our application to the FDA for regulatory clearance of the insulin configuration of the device in that population. Once the FDA application is filed, FDA review of 510 k market applications typically take about six months, which includes 90 days of FDA review time and time for response to questions that may come up during the review.

 

Stacey Simms  8:39

My understanding is that the iLet is a device it's we're talking about an insulin pump here. And I guess what I would call an artificial pancreas or hybrid closed loop system, where it communicates with a CGM to help you stay in a certain range. But the island has always been talked about as needing minimal input. In other words, last time I talked to Ed he was talking about you put your weight in. And that's really the only information it needs from the user to get started. Is all of that still the case? Is that what's in these pivotal trials?

 

Kate Farnsworth  9:09

Yeah, so that was designed to be initialized by weight alone. It doesn't require users to set curry shows or basal rates for instance, insulin sensitivity factors, the system uses your weight as a starting point and then learns quickly what your unique responses are based on CGM values that receives every five minutes. So with that in mind, we hope that once the FDA clears it, the iLet can be an automated insulin delivery device that requires very few inputs from healthcare providers and people with diabetes or caregivers. For us this solution isn't just about the feature is it's about the benefit that it could potentially give people reduced cognitive and emotional burden. You might recall Adam Brown has talked about the 42 factors that impact blood glucose at Ada conference and in his book bright spots and landmine, those of us in the community can definitely relate based on our own experiences. There are a number of diverse factors that pay people with diabetes on a whim, combine that juggling act with up to 180 diabetes related decisions that people with diabetes or their caregivers make each day. And we really do have a cognitive and emotional workload that those living without diabetes don't face. So our hope is that the iLet is cleared may reduce that burden, since it's offering a solution to type 1 diabetes management without the same numerical input as traditional employment therapy.

 

Stacey Simms  10:43

Can you speak to the idea of just entering weight and like announcing meals, I mean, I think for those of us my son's used an insulin pump since he was two. So we're coming up on, we're coming up on almost 15 years of using an insulin pump. And the idea of interacting with it less is a little bit mind boggling. You're a mom of a person with type one, you have a child with Type One Diabetes, can you just speak to that idea? You've already talked about the burden being lifted a little bit, but is it difficult for people to kind of wrap their brains around and the reaction of when it does work as well as

 

Kate Farnsworth  11:16

we assume I can't speak about the clinical trial right now or the results that we're getting. But what I can tell you as a mom of a child with diabetes, is that the cognitive and emotional burden that she feels just having to constantly worry about her diabetes is immense. And I think that we even as parents don't fully understand, you know, how much our kids have to think about diabetes, how much it impacts every moment of every day, and interacting with friends or going out or making decisions on whether or not they're going to sleep over at a friend's. And if there was a device that could potentially relieve some of that burden to me, you know, that's huge, that would be amazing for my daughter. So with the eyelid, when you're entering a meal, you would select whether the meal is the usual amount of carbs for you more or less, it's designed not to require you to count the actual number of cartons over time, the system's designed to learn what that means to you personally. So for my daughter, for example, might have a totally different usual meal than your son. So the system is designed to learn and adapt to each individual user. While there's, you know, that's the practical application. There are other considerations for wide the eyelid has been designed that way. There are 1000s of Americans who don't have access to an endocrinologist, we want him to engage them, we want to meet them where they are and help them get closer to their diabetes goals. I feel passionately about improving the lives of people living with diabetes and easing the burden they live with every day. And research has documented racial and ethnic disparities in diabetes treatments and outcomes. Technology uptake, for example, is much higher for white youth than black or Hispanic youth. As a public benefit corporation. Our goal is to get our solutions to as many people as possible. So we're actively exploring how we can reach the underserved populations and hope to be able to provide all people with diabetes, the same level of care,

 

Stacey Simms  13:33

I want to make a note and come back to that because there's been such a wonderful, I don't know how to say it, I want to make a note and come back to that. Because years ago, we talked about the DIY community, how it was reaching so few people, it was such a great benefit, but really not for a lot of people. And so many of you are passionate and wanted to bring this commercial product out. And now it's being done. So I'm gonna I want to follow up on that in just a little bit if I could, but let's continue to kind of talk about where we are, thank you. But the idea of no carb counting, to me, would be such a relief, because one of the shocking things that happened in my brain was within the first year of Benny being diagnosed, I think he was too he wasn't eating as much food as he does now at 16. But we realized that carb counting was so inexact and such guesswork, because you could try to be as exact as possible at home. But then you would go to a restaurant, and you really had no idea. And as you listen, my husband owned and operated a restaurant for many years. So you can tell somebody, this dish has this many carbs in it. But first of all, restaurants put so much more butter and fat, and seasonings and things in your food because that's what makes it taste so delicious at the restaurant, which affects how it breaks down in your body. But also, one person can make it to the next day even at a fast food restaurant, it's not going to be exactly the same. So what was the thinking behind it? Is it really just to make it easier on people or did the researchers and the founders here also kind of think that carb counting really isn't that exact

 

Right back to Kate answering that question, but first Diabetes Connections is brought to you by Gvoke Hypopen and you know low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're gonna pass out. There are lots of symptoms and they can't be different for everyone. I'm so glad we have a different option to treat very low blood sugar Gvoke Hypopen. 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 before Gvoke people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I am grateful we have it on hand, 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.com slash risk. Now back to Kate answering my question about the inexact science of counting carbs.

 

Kate Farnsworth  16:03

Yeah, carb counting is not very accurate. People are notoriously bad at carb counting, my daughter might be looking at her meal and see 15 carbs, another person with diabetes might count those curves completely differently, it's really helpful to be able to look at your plate and say, you know, this is usual for me, or this is more for me, this breakfast is way more than I would typically eat. So I'm gonna let the system know about that. Rather than counting the exact numbers in that restaurant meal.

 

Stacey Simms  16:43

I could talk about that for an hour. That to me is so revolutionary Benny the other day, we got these big cookies, which is you know, a real tree. We don't eat a ton of junk food, but we don't eat super low carb either. But there were these giant chocolate chip cookies. And he was higher than usual later. And I just asked him, I'm like, Hey, I'm just curious, because I don't look at everything he eats or talked about every bolus anymore. So what did you think those cookies were? And he said, Oh, I think it was I think I put in 35. I was like, dude, those were like, 65. Easy, right? And he was what I did. He's had diabetes for 14 years. Right? It doesn't mean he's a bad person. He just didn't. He just took a guess.

 

Kate Farnsworth  17:19

Yeah, exactly. Exactly. We have the same with my daughter. I don't manage her diabetes, you know, as actively as I used to when she was little, but occasionally I'll ask her, you know, how many carbs Did you think were in that, and then we'll compare it to the package. One really big example that we have, we have those flat pretzels, and they're in a big container. And she'll just pour herself a bowl. And, you know, she guesses on how many carbs are in that bowl. But one time we actually put it on the scale and calculated and she was 45 carbs consistently, because she had been doing this for some time. And I know the same thing happens with cereal, for example, once we move past that carrying a scale with us phase, our eyeballs are the judges and they're not very good. So yeah,

 

Stacey Simms  18:10

I think some people listening might be saying, Well, why don't you carry scales with you anymore? What kind of parents are you, but I got to say I'm not into adding any more diabetes burden, then we need to so I'm thrilled with letting technology replaced my brain on this, you know, control IQ has done a wonderful job for us and really helping and you know, what you're talking about is only going to help as well. So the big question with the iLet has always been about the dual chambered pump. This was a pump that years ago was talked about and I know you're still working toward a dual chambered pump with insulin and with glucagon in it, but my understanding is that what we're talking about today, what the pivotal trials are all about is insulin only. Can you talk a little bit, just kind of give the listeners an update on what we're talking about in terms of the one chambered pump and what you're working toward, with the dual chamber pump.

 

Kate Farnsworth  19:00

So the iLet’s designed with two chambers, one for an insulin cartridge and the other for our glucagon cartridge. Her initial device after an FDA clearance will have the insulin chamber available to users while the glucagon chamber will not be usable. Once the dual hormone configuration has been also cleared through the FDA through a subsequent 510 k application. The glucagon chamber will also be made available to users. Our hope is that it would be the same device just the second chamber would then become available.

 

Stacey Simms  19:34

I understand you may not be able to answer this. But if and when it becomes dual chamber pump. The hardware as you say would be the same. Is it just a question of software updates or is that looking too far in the future?

 

Kate Farnsworth  19:47

It is my understanding that it will be a software update. But we definitely are getting ahead of ourselves there. We have to go through the whole FDA and 510 k application for that company.

 

Stacey Simms  20:00

Got it. Okay. I'll be I'll tread lightly on Be careful on that. Of course, a couple of weeks ago, I talked to the folks at ziggo log, which I'm still not sure I'm saying correctly, which is the glucagon that I believe you all are working with.

 

Unknown Speaker  20:19

Is that still the case?

 

Kate Farnsworth  20:20

Yes. Yes. So we are working with Zealand to provide the glucagon that will be used in the clinical trial for the by hormonal device. And they recently got approval for adaptive glucagon for the treatment of severe hypoglycemia. And they're marketing it under the brand name Tagalog. I hope I am saying that.

 

Unknown Speaker  20:42

I think we're good.

 

Stacey Simms  20:43

I guess my only question on that, because I know it's a separate company. But it was so many years that we were waiting not just for the eyelid, but we were waiting for that shelf stable glucagon, so we didn't have to emergencies or for low treatment, reconstitute or kind of open that red box or that orange emergency box. So it was a big relief in many ways when the different types of shelf stable glue gun were approved. I mean, there's three options. Now, I know you can't speak in detail about a lot of this. But I got a question from a listener about how this would work. And the question wasn't so much about the mechanisms or the software. I know that's proprietary. But the question was, you know, it's always risky to use glucagon too much, right? It's also why we don't want to have too many lows in a row that your liver has to help out with because you can deplete the glucagon supply. And I'm curious, this listener wants to know, is there any danger of depleting the body's own sources if you're always giving it from an external glucagon, injection or infusion?

 

Kate Farnsworth  21:49

So we're deeply aware of the risks of severe hypoglycemia until we know more from a pivotal trial, it would be best at that question to an MD with expertise in glucagon storage and depletion. But what I can tell you is that we're partnering with seeland to provide the glucagon that will be used in the clinical trial for our bio hormonal device. As you know, they recently got approval for his ecolog. And we plan to use that same shelf stable ready to use quizzes on with the island in our bio hormonal pivotal trials. It's really important to note though, that the amount of glucagon that will be dispensed in the iLet will be substantially lower than the amount dispensed in the cycle of injection or prefilled pen. That's because the ladders for severe or hypo rescue and the amount the iLet would dispense is intended to be hypoglycemia prevention. So that iLet is designed to micro dose very small amounts of glucagon as needed based on the person with diabetes CGM readings and the speed of their glucose decline. So it's really important for people to know that they wouldn't be getting a rescue dose of glucagon in that scenario. Of course, the use of Desa glucagon with the iLet will need additional FDA approval for Depo glucagon. And the iLet will also need FDA clearance for dispensing deathly glucagon.

 

Stacey Simms  23:12

I mentioned earlier that the system and you mentioned this as well, is working with a CGM. And my understanding is that this is Dexcom g six.

 

Kate Farnsworth  23:21

That's correct. The eyelid is designed to work with the Dexcom CGM, but we're open to working with other CGM manufacturers in the future. Because we understand that choice is really important to people living with diabetes.

 

Stacey Simms  23:36

That's great. Dexcom g seven is moving forward. I assume that as that moves forward, this iLet will move forward with it.

 

Kate Farnsworth  23:45

I would think that's a fairly safe assumption. Okay, good answer. Can you tell me

 

Stacey Simms  23:50

any details? Again? I feel like I'm fishing here. But can I can you tell me any details about the pump itself? You know, we've got Omni pod, which has the remote PDM that is used with it. We have Tandem, which has buttons on the pump, and they're hoping to get bolus by phone pretty soon. Is the eyelid buttons on the pump? Is it a phone control? Anything you can tell me about that?

 

Kate Farnsworth  24:13

Yeah, so everything currently is designed to be done from the iLet itself. It has a touchscreen interface. And the infusion says at launch will be similar to the inside. So people are familiar with john caustic and our team are working on some of the potential mobile solutions for the iLet’s. And we hope to have more information about those as we get closer to launch.

 

Stacey Simms  24:38

I know that you have had a lot of input from the community because I've seen the the posts that you will have put out there asking for help from the community in terms of I guess what is called human factors and things like that. Can you share a little bit about anything that you've learned just anecdotally about what people like and don't like about using an insulin pump, or what you could any kind of feedback that you got along The way that might be of interest.

 

Kate Farnsworth  25:01

Unfortunately, I can't share that information. I'm sorry. Yeah, I can talk a little bit about the fact that we have a lot of preclinical data that's available on our website. So if anybody is interested in looking at bat, it's Beta Bionics  calm, and I can't comment on the results of our pivotal trial as it's still in progress. We do hope to have those results later this year and look forward to sharing them. Our goal backed by appropriate research, and continuously advancing technology is to create a solution that people with diabetes don't have to spend so much time micromanaging decisions that impact their condition, and that they can spend more time focusing on other things in their lives.

 

Stacey Simms  25:51

This is another question from a listener. And this is about changing the reservoirs out and I this would be when it is dual chambered. So do you have to change them together? Or can you change out the one that is empty? And I'll add to that, again, knowing I don't know if you can answer that, you know, right now, we are all told to change out an insulin cartridge within three days, do you have to change the glucagon in a period of time as well.

 

Kate Farnsworth  26:16

So as designed the insulin cartridge use that the iLet can be changed actually independently of the infusion set. So you can change your insulin cartridge, but not your infusion set. And we intend to have prefilled cartridges and user filled cartridges available if FDA clear, as for the glucagon, that's one of the things we hope to uncover during the by hormonal pivotal trial is the duration that people can leave the Deathly the carton cartridge in the device, and how often it needs to be changed.

 

Stacey Simms  26:52

You I didn't ask about infusion sets, and I'm not a big fan of any of them on the market. I think that's the weak link of pumping. I'm not alone in that assessment. Two questions there. So when it is dual chamber, do you anticipate two infusion lines and two infusion sets? I assume you're not mixing these two together? Right?

 

Kate Farnsworth  27:13

Yes, we anticipate using two inpatients.

 

Stacey Simms  27:16

And then the other question is, can you share what you're using is? Is there a new one coming from Beta Bionics  or are you planning to use one that's already on the market?

 

Kate Farnsworth  27:24

For our pivotal trials, we're using ones that are very similar to in test that are currently available for no medical. And that is what we plan to use that launch.

 

Stacey Simms  27:38

Couple other just kind of life style questions, I guess about the pump? How is it charged? Is it a battery is it is an external? How do you charge the pump.

 

Kate Farnsworth  27:48

So the iLets designed for inductive charging like modern mobile phones, so no cords or cables are required to charge it. The batteries designed to typically last about five days on a single charge and a full charge takes about two hours.

 

Stacey Simms  28:04

So wait, I think that went by too quickly for my brain. Okay, you mean like lay it on a charger? You don't plug it in? Correct? Do I have to get a special charger? Or can you use anything? Like you said a cell phone charger? I mean, no, I don't use one of those, which is why you're hear me stammering around I'm thinking like, do I get one on Amazon? Do you buy that this is easy. These are easily available for regular people.

 

Kate Farnsworth  28:25

Our hope is to ship you a charger with the device, but that it would also work with another charger of similar design that you might have around your house. Okay,

 

Stacey Simms  28:38

and is I'm probably said it's so old fashioned to everybody listening. But you know, what are you gonna do? And talk a little bit about the pump? Is it waterproof? Can it get wet? It is designed to be waterproof. Yes. So wait, now I have to ask. So like I can you can swim with it. It's not just waterproof to a certain amount.

 

Kate Farnsworth  28:57

So you remember those animals bubbling water displays that they used to have when they had their pumps floating in the water. So their devices were certified the same level that the iLet, we hope that the iLet will be certified to as well.

 

Stacey Simms  29:15

Very cool. Anybody have those old animist displays? You guys could grab those. I think I was at a display once they had fish swimming in the water once.

 

Kate Farnsworth  29:22

Yeah, exactly. I that's how it was explained to me by one of our engineers was the old venomous, complex the same way and they had the bubbler with the fish in it.

 

Stacey Simms  29:34

I think I have a photo because you know, I used to work with animals. And I'm pretty sure I spoke at an event where they had these centerpieces at a table and it was a fish tank and the pumps were ended. I'll have to search that up. And that's great. Let me ask you. I'm sure that my listeners will have many more questions about the eyelet. And hopefully we can speak again we'll get more information as it moves forward. But you and I have known each other for a long time in the community as fellow diabetes parents. Do you mind As a couple of questions about how you're doing and your daughter was diagnosed when she was what, eight, nine years old?

 

Kate Farnsworth  30:05

That's a incident. He was diagnosed when she was eight. And she just turned 18. Wow, she is now an adult. Oh, my

 

Stacey Simms  30:13

gosh, how is she doing? I mean, we've already talked about her a little bit, but it sounds like me, you have backed off quite a bit of the diabetes parenting, although we never really back

 

Kate Farnsworth  30:24

off. Yeah, so she's doing great. She's finishing high school, and she has been accepted to university in September, and she will be living in residence. So we are preparing for her moving out of the house in late August. Wow. Oh, my goodness.

 

Stacey Simms  30:42

I'm curious. Now, I don't want to get too far off the topic here. But I'm curious, did you all as a family do anything special in terms of college prep, I have a plan in mind. I don't know if I'll do it where like Benny's, second half of his senior year of high school, I really just want to leave him alone, completely, like, stop following him, you

 

Kate Farnsworth  31:01

know, be here if he really needs me. But I don't know, did you do anything like that. So we have been slowly transitioning and backing off as sort of naturally as the year has progressed. So she takes care of all of her diabetes management side changes all of those things without being reminded by me, which is fantastic. I have started transitioning to her ordering supplies. So I've taught her how to, you know, it's just a login to a website, and you click what you need. And they check our insurance is not very complicated. But I have walked her through how to do that, so that she has a bit more comfort with it, we are really worried about overnight, because she currently does not wake up for low blood sugars. So we've been sort of thinking through how we can do that. And over the summer, we will be backing off that and having her finding ways to get her to wake up to her low blood sugar alarms and try and manage those overnight. Because that is my biggest concern about her moving away.

 

Stacey Simms  32:11

When you and I first spoke, it was the summer of 2015 was the first year of this podcast. And we were talking about nightscout I can probably dig up the pictures, I had this giant setup that I slept to friends for life that I don't use on the road anymore. When we're back on the road, I'm really excited to see people again, but we talked at the time about the nightscout project and about your help to so many people in designing the Pebble watch face, you know helping people set that up. I'm curious as you look back, I mean, a lot of people from the Do It Yourself community, you already mentioned john kostik, and many others are now working in the commercial space to bring we mentioned this towards the beginning to bring what was better technology, better care. That was really only a very, very small percentage of people to the larger community. Could you speak to that for a minute, it's amazing to me to see how far everything has come.

 

Kate Farnsworth  33:09

I started out with a real passion for helping people living with diabetes and trying to get you know all of the technology to them. And the problem is that we reach a certain wall with the people that we can reach online, we're sort of in this echo chamber of the same people all the time. And what we've discovered is that technology uptake is much higher in certain populations. You know, I recently did a study and we're finding that people who are Caucasian or higher income are much more likely to be using these tools than the people of color and their counterparts. So working for companies like Beta Bionics  give us the opportunity to reach a much wider group of people and really gives us the opportunity because we are a public benefit company to try and engage those people that aren't being engaged currently with the tools that are available.

 

Stacey Simms  34:13

When you look back at your time in the DIY community. You know what stands out to you. It was such a buzzy busy time between 2013 and 2016, or even 2017. But as commercial offerings have, frankly, gotten better, you know, I know a lot of people still use the DIY stuff, but it seems like there was an energy and there was a really, you know, a time not too long ago were folks like you were I gotta imagine your phone was buzzing all the time with people asking for help. You know, what was

 

Kate Farnsworth  34:45

all that? Like? Yeah, it was a crazy time. And, you know, to a certain extent, those communities are still really active. The Loop community, which I run has 27,000 people in it, you know, so there's still A lot of activity surrounding these things. But I think as the commercial solutions come around, we're able to provide solutions for so many more people that that sort of aggressive need dies down from a little bit from the DIY community, because a greater number of people without maybe the same technical expertise are able to find solutions with the commercial offering. So I always said, I would keep doing that volunteer job until a commercial offering was able to put me out of business. because ideally, you know, I hope that commercial solutions like that iLet will be able to serve the diabetes community, so that we don't have to look to DIY solutions anymore.

 

Stacey Simms  35:49

I always hate asking this question, because I know there's probably not going to be an answer at the end of it. But what is the hoped for timeline here? Can you tell us anything about the submission or or things like that?

 

Kate Farnsworth  36:08

I love the silence. That's okay. I have to ask. Yeah. So as I said, once the clinical trial is completed, then we will submit for FDA regulatory clearance of the insulin only configuration. Once the FDA application is filed, there will be an FDA review of the 510 k market applications, those typically take six months. And then we will have a launch date. Once that has all been completed. This

 

Stacey Simms  36:38

might be an odd question. But as we start to wrap it up here, when we go to conferences, like friends for life over the last several years, and Ed Damiano speaks about the the product and the process and everything. Anything that has to do with Beta Bionics  and the iLet is so closely watched, it has just become, I guess the way to say this, you guys have a lot of fans out there in the community. I mean, it might be a small portion of the entire diabetes world. But this is a really passionate group of people kind of waiting for this. Do you as you talk to each other? Like, do you feel the pressure of that? Is that exciting to you? I just would imagine and I can't answer this for you. But going to work, there must be amazing every day to know that people are so excited about the product

 

Kate Farnsworth  37:25

is absolutely amazing. We definitely feel the community spirit and presence and pressure to deliver you know, every day, we talked about the fact that, you know, we want to help the people living with diabetes who have been waiting for us. And we don't want to make them wait any longer than they have to. And you know, the process has taken longer than we hoped it would. So we're definitely committed to the people with diabetes that we're trying to help. And we have the most passionate team working on this, everybody is so committed. And we have so many people who are touched by type 1 diabetes, either living with Type One Diabetes, or parents of children with Type One Diabetes, or children of parents with Type One Diabetes. You know, we're part of the community. We really feel passionately about this. So we cannot wait to have this device ready for those people.

 

Stacey Simms  38:27

Okay, thank you so much for joining me and for being patient with my questions. I know as I said, you're limited in what you can say. But I cannot tell you how much I appreciate Beta Bionics  making you accessible and coming in to share this. So and thanks for all your hard work. I cannot wait to learn more. I know you can't wait to tell us more. So thanks so much for being here.

 

Kate Farnsworth  38:46

Thank you so much for having me. I'm really grateful for this opportunity. And I look forward to talking to you again in the future.

 

Unknown Speaker  38:58

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  39:04

More information at Diabetes connections.com. Or, of course in the show notes. You can always go to the homepage though, to get the full notes and the transcription of every episode. And there's a lot there. as Kate alluded to, there are some other studies, there's some more information, and it's all at Beta Bionics . So I will link that up in addition to the interviews we've done in the past with Ed Damiano, and I'm gonna link up the first interview I did with Kate back in 2015. Because looking back, that made me laugh and this has nothing to do with Beta Bionics  or the pumper or technology or it's my technology. So I use very light technology.

This is just a little bit of inside baseball now on the podcast when I travel and I'm going to be traveling again to conventions this year, which is so exciting. I have a small kind of a studio in your pocket. It's a zoom h5 recorder and I use a couple of ATR 2100s if you're into that kind of microphone technology. Light stuff. I don't even need to plug it into a computer. The h5 is its own little studio. But when I interviewed Kate and I interviewed a bunch of people at that first friend for life that I went to as a podcaster, I brought my Yeti. The Yeti microphone is a brick. It's not that great a microphone actually that don't get me started. But it's a brick. And it's so, so heavy. And I brought like a mini studio, I had this paneling setup. Oh my gosh, I had so many things to check when I got on the airplane. And then I was schlepping it around the hotel at friends for life, which is not the most compact hotel. It's a lot of walking. So I'll see if I can dig up some pictures. But Kate was very patient with me as was everybody I talked to that day. Just funny how things do change over six years.

All right, we've got some Tell me something good coming up with some fantastic anniversaries, not about the podcast, some listeners who are celebrating very long time diversities and are doing great. But first Diabetes Connections is brought to you by Dexcom. And one of the most common questions I get is how to help kids become more independent. You know, those transitional times are pretty tricky. elementary to middle middle to high school. You know what I mean? Using the Dexcom makes a big difference for us. It's not all about share and follow that's helpful. Think about how much easier it is for a middle schooler to just look at their Dexcom rather than do four to five finger sticks at school or for a second grader to just show their care team their number before Jim at one point Benny was up to 10 finger sticks a day and not having to do that makes his management a lot easier for him. It's also a lot easier to spot the trends and use the technology to keep your kids more independence. Find out more at Diabetes connections.com and click on the Dexcom logo.

 

And tell me something good this week big time big diversities. Terry Lopes is celebrating 50 years of type 1 diabetes. She was diagnosed at the age of nine. And she made a really nice Facebook post where she talks about being grateful to the people in her life who helped her and looked out for her early on parents, siblings, friends, teachers, camp counselors, nurses, doctors, she says and thankful for those who still look out for me and for the technology that helps me have better control and live much more freely. And also makes it so that no one needs to be told they may only live to the age of 40 when diagnosed as a young child. Terry, thank you so much for sharing this. She also posted that her dad turned 90 recently as well. So Happy Birthday to him, my goodness. But it really is hard to imagine. And I know I'm so grateful to know many people who have lived with type one for 40,50, even 60,70 years. I mean, it's amazing that you know, I don't know them personally, but we've been connected online. And they were all told as children as children, that they would not live a long and healthy life. Our kids are not told that anymore. And I'm so grateful for that. Terry, I'm thrilled that you're in the group and thank you so much for sharing that.

Yerachamil Altman shared a different kind of diaverary, he posted that he has been using an insulin pump for 40 years. 4-0! he has got to be one of the first people to use an insulin pump. And we've had him on the show. I know he helped design insulin pumps. I mean, my goodness, what a life. And he always posts we're so thankful for this the old technology. So if you're in the Facebook group, Diabetes Connections, the group I'll make sure to repost this. But I mean, the first insulin pump was basically like a syringe taped to what looks like a big pager, and it just stabbed you with the needle and gave you the Insulet I don't know it just it doesn't look like something that would work. It looks like something Benny would have slapped together from spear diabetes parts when he was in second grade. God bless the people who use this and tested everything and made it so like I just said so that our kids and adults diagnosed today can live long and healthy lives. 40 years with an insulin pump, you're off a meal. Thank you for sharing that. And you know, I love sharing the good news. If you've got something Tell me about it. Stacey at Diabetes connections.com or post in the Facebook group. I love to hear it.

Before I let you go quick reminder about in the news, my new feature every Wednesday 4:30pm Eastern live on Facebook. I hope you can join me for that I'm working on some different texts. And to see if I can make it look a little bit more TV newsy. That's been really fun. I got a green screen and oh my gosh, I started out in television. And then I went to radio and then I went to podcasting. And now it's like back in TV reporting. It's bonkers. But I'm also as you know, if you're a regular podcast listener, and putting out those in the news episodes every Friday as well so if you miss it live, or you just want to hear the audio, I definitely want you to have options and like doing this a lot. It's been really fun. I'm trying to keep them short. So if you like it or you don't you've got any constructive criticism, any kind of criticism I can take but come on be nice. Please, please please let me know. I also announced on social media that I have taken a new position I am working with the fabulous folks at she podcasts. I'm Selling sponsorships for she podcasts live, which is coming up in October of this year. I'm going to do friends for life in New York in the beginning of October, and then I'm going to shoot podcasts live in the middle of October in Scottsdale, Arizona. It's going to be a busy month. I also have a big birthday in that month. So we're going to be we're looking forward to October, it's going to be great. But if you are at all involved in podcasting, and you're a woman, please check out she podcasts, I'll put a link if you are interested in reaching 1000s of women who podcast You don't have to be a technology company. But if you want to reach women who are movers and shakers, let me know because I can hook you up. That's my new gig. I'm still gonna be doing the podcast of course, and all my other projects. This is perfect because I get to meet some new people and do some fun stuff. But I don't have to give up anything but maybe some sleep. I don't know. I'm gonna get this done.

Alright, thank you, as always to my editor John Bukeas from audio editing solutions. Thank you so much for listening six years. Oh my gosh. I'm Stacey Simms. I'll see you back here in just a couple of days. Until then, be kind to yourself.

 

Benny  46:10

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

 

Transcribed by https://otter.ai

Jun 11, 2021

It's "In the News..." the only LIVE diabetes newscast!

Top stories this week:
-Apple drops a BG hint in the latest watch update
-New info about Dexcom's G7
-Omnipod 5 study released
-Diabetes drug shows promise for weight loss
-Power of peer support
Join Stacey live each Wednesday at 4:30pm EDT at https://www.facebook.com/diabetesconnections

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcription below: 

 

Hello and welcome to Diabetes Connections In the News! I’m so glad you’re here! I’m Stacey Simms and each week I’ll share the top diabetes stories and headlines of the past seven days.  Whether you’re joining me live on Facebook or watching or listening after, I’m here to get you up to speed quickly on what’s happening with diabetes technology, research, and our community. Since these are headlines and summaries, as always, you’ll find all the sources and links in the Facebook comments and in the show notes at d-c dot com.

XX

In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know Stuff”

XX

here’s what’s In The News this week…

Couple of buzzy slides from Apple’s World Wide Developer’s Conference. First, this one from their WatchOS 8 update.. they didn’t use the words blood glucose.. but this slide was shown featuring the graphic “blood glucose highlights.” That likely means pulling the data from existing apps like Dexcom or Dario or One Drop, but there are always rumors about Apple releasing a glucose sensor of their own.  We shall see – thanks to Nerdabetic for bringing this to our attention.

Another diabetes shout out in this slide - same presentation - about time sensitive notifications. If you look closely you can see the Happy Bob app, which puts funny messages along with glucose notifications.

XX

Lots of news out of the recent Advanced Technology and Treatments in Diabetes Conference or ATTD.

Dexcom showed this slide about their upcoming G7.  We’ve reported on this a lot over the last two years, I’ll link up our previous episodes. but the new info includes: a 30 minute warm up time as opposed to 2 hours right now, and direct to watch capability. Direct to watch from Dexcom – that means you don’t need your phone to see your BG on the watch face anymore - was first announced in June of 2017 with the G5 and that proved more difficult to implement than expected. I’m talking to Dexcom for the podcast later this month so we’ll get a update on what this really means. The G7 is a smaller, all in one with sensor and transmitter applied together. It’s NOT FDA approved yet so there’s no timeline for release.

Also, Dexcom put out a study that says people with type 2 who use basal insulin benefit from the use of CGM. The Mobile study took place over eight months. Those who used the CGM increase time in range and showed a full point drop in A1Cs on average.

https://twitter.com/ATTDconf/status/1401200753717432328

New data presented on Omnipod 5.. this is just an abstract – full study will be released later this month. This is Insulet’s hybrid closed loop system where it works with the Dexcom to keep a user within a targeted blood sugar range. They looked at children and adults ages 6-70 to measure safety of this new system. A1Cs came down, time in range went up, very low occurrence of hypoglycemia and researchers concluded it was safe. The Omnipod 5 operates in two modes, an automated mode and a manual mode. The system provides automatic insulin delivery with customizable glucose targets from 110 to 150, which can be adjusted by time of day. Omnipod 5 with Horizon is in front of the FDA right now so there’s no timeline on release.

 

https://care.diabetesjournals.org/content/early/2021/05/21/dc21-0172

 

Also at ATTD - DarioHealth looking at outcomes from their highly personalized apps and system. Dario's study found that personalizing the clinical interventions in response to unique individual actions really helps. That’s opposed to systems with more generalized predictions. This study showed more frequency in blood sugar testing and monitoring in those who received an personalized intervention.

https://www.prnewswire.com/il/news-releases/dariohealth-releases-study-demonstrating-the-impact-of-personalized-digital-interventions-to-improve-self-management-of-diabetes-301305650.html

XX

Early on here but a new closed loop system that knows when you’re eating is being tested – this was a small trial in adolescents and young adults.

This is out of UVA – the same place that developed what became Tandem’s Control IQ. The researchers say teenagers are particularly prone to skipping meal boluses. This system, known right now as Rocket AP contains an Artificial intelligence bolus priming system that uses CGM to basically decide if you’ve eaten without bolusing. If it thinks you have, it will automatically dose.

The median time in range after a bolused meal was 100% with the Rocket AP system and 93% with the control system, but was a corresponding 83% versus 53% after a meal without a bolus. Again, that’s 83% time in range when you completely forget your meal bolus. Bears watching.

https://www.medwirenews.com/diabetes/ai-fully-closed-loop-insulin-delivery-type-1-diabetes/19231866

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Up next.. a diabetes drug is approved for weight loss but first..

quick break – want to tell you about one of our great sponsors who helps make Diabetes Connections possible.

  • Inside the Breakthrough is a podcast that mixes historical wisdom with modern insight – it’s a science show that’s also entertaining. I love it. The latest episode talks about scientists who knew they were onto something but needed to see things with their own eyes. How actually seeing something like a Kraken? Makes a huge difference. It also meant a name change for what some thought had only been a myth. And this actually relates to diabetes! Listen to Inside the Breakthrough wherever you listen to podcasts..

Back to the news…

 

The FDA has approved the medication Wegovy (wee-GOH-vee), a higher dose of the diabetes drug semaglutide (semuh-GLU-tide), to be used as a weight management drug in patients with obesity. It’s the first drug for chronic weight management that has been approved by the FDA since 2014.

It is injected under the skin once a week. People in the study lost an average of 12 percent of their body weight. People with type 2 diabetes lost 6 percent of their body weight. No reason given for the difference and there are some – intestinal side effects – but Wegovy is said to be safer than older weight loss drugs.

https://www.healthline.com/health-news/fda-approves-popular-diabetes-medication-for-use-as-weight-loss-drug

 

XX

The power of peer support was shown at ATTD in a presentation by Kelly Close and Diatribe. Their survey showed engagement in the diabetes online community didn’t just make people feel better emotionally, which is great, but it also predicted better glycemic outcomes.. those most involved in the community increased their chance of having an A1C under 7.

That’s Diabetes Connections – In the News.  If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com.

Please join me wherever you get podcasts for our next episode -Tuesday – we’re talking to the folks from Beta Bionics for the first time in a long time to get an update on the iLet pump. And the episode that’s out right now is all about what college students want you to know.

Thanks and I’ll see you soon

Jun 8, 2021

Graduation season is here! Whether your young adult is just out of high school or completing a college degree, there’s a lot to consider when it comes to diabetes. We've got a roundtable discussion with a lot of frank talk about T1D in college.

Recent graduate Shay Webb and college senior Haley Owens talk about everything from what to do when a professor doesn’t care about accommodations, to deciding how visible you want diabetes to be, to what they want parents to know. We're also joined by Anna Floreen Sabino of the College Diabetes Network. Webb and Owens are both CDN NextGen Fellows. 

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 Below

 

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, lots of graduations this time of year and whether your young adult is just out of high school or completing their college degree. There's a lot to consider when it comes to diabetes.. Frank talk about T1Din college.

 

Shay Webb  0:41

Sometimes it's the people you don't expect to pick up on things who actually picked up on it rather than the authoritative figures who you're expected to report to don't always want to pick up on it or want to actually have responsibility for it because they feel like if they have responsibility for it, that's their liability when in reality, it's your diseases your body. We just need your ally ship.

 

Stacey Simms  1:06

That's Shay Webb she graduated last year Shay and Haley Owens, a college senior. Join me in a conversation about everything from what to do when a professor doesn't care about accommodations to deciding how visible you want diabetes to be to what parents need to know. 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 are glad to have you along. You know we aim to educate and inspire about diabetes with a focus on people who use insulin. Most of you are very familiar with my family's story. My son was diagnosed with type one, right before he turned two he is now 16. My husband lives with type two diabetes. I do not have diabetes, and my daughter doesn't have diabetes. My daughter is 19. And she just finished her sophomore year of college. So she is home. She's been home for a couple of weeks now. And so we've moved through what I call the re entry phase. I used to call that to when they came from Camp, the re entry part of coming home. It's always an adjustment for everybody. But she's doing great.

And you know, we're just starting now to think about college for Benny. He's done with his sophomore year of high school, and even a little early yet, but you know how it goes the pressure High School is is just bananas. So we've really tried to avoid that. But he has started taking a couple of those, you know pre ACT PSAT kind of things and thinking about the process. Some of you are scolding me saying it's never too early. But I think our attitude has always been he'll figure it out as we go. And of course, though, in the back of my mind all of these years has been diabetes at college. And I'm still trying not to think about it too much, frankly, I know he's gonna do well, I know we're gonna give him all the independence that he has needs he wants, but it still makes me a little bit nervous. So that's why I really excited to know about the college diabetes network and I plan to use all of the resources I possibly can.

And to that end, we have a great roundtable for you this week, covering a lot of issues pertaining to school. This is a longer than usual interview, so I'm going to try to get right to it here. So you will hear from Haley Owens. She was diagnosed with type one at the age of nine. She's in her senior year at the University of Maryland, Baltimore County. She founded the college diabetes network chapter there in 2018. And she's been on the executive board ever since she's spending the summer at Camp Possibilities diabetes, sleepaway camp. It's her 10th year attending. She's actually the program director there now.

You'll also hear from Shay Webb. She's lived with type one for almost 15 years. She's a recent graduate from University of North Carolina Wilmington. And she's got a Bachelor of Science in clinical research. She was the founding vice president of the CDN chapter at UNC Wilmington. And you'll also hear from Anna Floreen Sabino part of the leadership of CDN she lives with diabetes herself and like me as a graduate of Syracuse University, we like to work that in whenever we can. All right, all of that is coming up.

But first Diabetes Connections is brought to you by Gvoke Hypopen  and when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most people carry fast acting sugar. And in the case of very low blood sugar why we carry emergency glucagon? There's a new option called Gvoke Hypopen  the first auto injector to treat very low blood sugar. Gvoke Hypopen V is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly 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.

Haley and Shay and Anna, welcome to the show. I'm thrilled that you could all be here. Thanks for coming on. Thanks for having us, Stacey. Awesome. Thank you so much. Yeah, we're glad to be here. And uh, let me start with you as we look ahead Your word this very unusual for most school year is over, how is CDN doing? What are you talking about for the summer that looking ahead to the fall?

 

Anna Floreen Sabino  5:10

Well, I think I mean, for those of you who don't know, college diabetes network is we are 10 years old now. And we are a nonprofit organization that is really focused on providing, you know, peer support and programs and resources for young adults with C one D. And I think the key there, especially this year is around peer support and maintaining as much connectivity despite the craziness of the last 18 months and more to come, I'm sure for college students especially. So CDN is an org is really focused on you know, how do we constantly stay in the loop on what's happening and making sure that we're really listening to our students, and our parents and all of their, you know, ecosystems that surrounds them to make sure that they're safe and equipped and prepped for what's to come, whether it's transitioning home, figuring out finals, interviewing for a first job over zoom, we're right there with them. And it's so excited to be overseeing this brand new fellowship program that both Shay and Haley who are joining us here today are a part of, and one tiny little silver lining to this whole thing is that this program wouldn't exist in the capacity that it does now, if we didn't have COVID. So it's been a joy to get to know the 20 fellows who are part of this program. And and hopefully it will continue. I'm curious,

 

Stacey Simms  6:33

no, what do you mean, it wouldn't have happened like this would change.

 

Anna Floreen Sabino  6:37

So traditionally, CDN has been very, very fortunate to bring several students couple dozen to the big diabetes, you know, national conferences each summer, the ADA Scientific Sessions, you know, at CES geared towards, you know, diabetes educators, as well as the friends for life conference in Orlando. However, this year, we decided, instead of having multiple different cohorts to combine the cohort into one and offer a weekly series of leadership development workshops, and have one cohort over the course of say seven months where they get to know each other, learn a bit about some professional development and skill building be matched with a mentor. So it's just a little bit more of a robust, kind of a more flow type of a program and less stagnant. But it's been wonderful to be able to build I think, further relationships with each of them, rather than just kind of a weekend long burst of information gathering and sharing. Before we jump into all our topics. Let's just do quick introduction, a little bit. Shay, tell

 

Stacey Simms  7:37

me a little bit about CDN and your college experience you have graduated us here in North Carolina. Tell me about starting CDN,

 

Shay Webb  7:45

I saw the disparity on my campus, and I really wanted to change things. So it was around my first year of college. And I say first year because I was actually an early college student. So my first official year of college that I noticed there's nothing on campus that really talks about the advocacy for diabetes. So I reached out to the liaison for CDN, or at least for our region of CDN at the time for lessons change. And I told him that I wanted to create a chapter. And honestly, it kind of stemmed from this idea because I had another friend, and she had just created this beating club. And I'm like, wouldn't it be cool if we combined all of our clubs and our ideas, and we had like this healthy, diabetic friendly potluck or something around the holidays, and I'm like, this would be a perfect event for CDN. And at the time, I didn't really know about it, but doing my research, I'm like, this is perfect. And then my mom, in addition was like when you get to college, you know, look into this stuff. Because it's out there, people just might not know about it. I reached out and I created my chapter of CDN, which is called dubs for diabetes. Because we are at UNC W, University of North Carolina Wilmington. And at first, it was really hard to find participation because when my chapter started, Hurricane Florence hit North Carolina. And that was very detrimental for a lot of people. So we started school year off and then we didn't come back until about three months later. So some time later, another student wanted to create a chapter but he didn't know that one had already been established. So he had a registered student organization. And I had a chapter. So we all came together and put our heads together. And that's for diabetes was born.

 

Stacey Simms  9:33

And then Haley, tell me a little bit about your experience are you are graduating this year.

 

Haley Owens  9:37

So I'm a senior and I think I'll be a senior for another another year. Yeah, so college for me was just really interesting. I mean, so I've had diabetes since I was little. So I entered my college experience, also as an individual living with type 1 diabetes, and I've been fortunate enough to have had the opportunity to connect with larger populations and community to us that also have this commonality of diabetes. And I've worked within the diabetes sector through a nonprofit. I've been really fortunate enough to have community on my side. But similar to Shay, I think I saw the disparities on my campus. And I saw, interestingly enough, I think it was the first year of my college experience I was walking around, and I just was noticing all of the people who had CGM Zhan and pumps on and I was like, This is so radical, because I would usually be the only one with these technologies visible. And people would say, Hey, here's a pager, what's that? You know, what kind of cool devices that so I was like, this is really awesome. And the inspiration for me was that I loved and I still love working with the diabetes community. I love working with summer camps for children with diabetes, and a part of one today as a, as a counselor,

 

Shay Webb  10:51

I really wanted to bring that community aspect to the college campus as well for all of the students who were living with type one or any other form of diabetes, because that was a little bit of a nuance that I made to my chapter was that I said, I really would like to recognize all forms of diabetes, not just type one. That's interesting, what Haley was saying how, you know, she would see different people in CD ends and insulin pumps and everything on campus, because I still remember there was this girl who I was friends with for a while. And we had a mutual friend who threw a birthday party, like a birthday dinner one night, and I came and I was wearing a shirt and it didn't have sleeves or anything. So you could see my CGM really well. And she just sits down beside me. And she just starts rattling off. So it's not the freestyle, and I'm like, um, yay, it is. How do you know this? And then she just started talking to me about everything and how long she had it in her insulin pens. And I'm like, Are you serious? Like, this is not good. But this is like really dope right now. I'm super excited to see no idea. And I'm like, sitting there supersized. And they're like, What are you so happy about? And I'm like, Listen, I can't even explain it, because you won't get it. But it's super awesome.

 

Stacey Simms  12:05

You know, it's funny. And Anna, let me bring you in on this. One of the topics that we had put aside to talk about kind of how diabetes can be invisible, right? how a lot of people don't see it. And yet, we've already started talking about how you spotted each other. Obviously, not everybody's walking around with a sleeveless shirt, and a CGM. When we talk about not being seen, I imagine that for most young people, it's not always a question of hiding those things. It's just or maybe it is, but I'd like to hear that for both of you all, but to me, it would be more of not announcing them. Does that make sense?

 

Anna Floreen Sabino  12:38

Absolutely. And I think one of the things that and I've had type 1 diabetes for over 30 years now. So I think both of us eat. But I think one of the things that I've realized even as I have, I don't want to say the word aged but but gotten older, gone through college grad school started a family is that the burden of self advocacy and the invisible load that people living with a chronic illness, like type 1 diabetes is never ending. And, you know, for parents who are listening who have those in high school, Hi, I'm Stacy. But it's constantly there. I mean, just a few seconds ago, my insulin pump was was beeping, I was on mute, but you couldn't hear it. And I've got a low battery and low reservoir. And although I'm going to continue on this podcast, and you know, continue out my day, it's a reminder that I am different, and I have to pay attention to this or else and it's that it's the weight that is there, the invisible. There it is, again, the invisible worry that if I don't do this, then that and it's a reminder that you are being reminded to, you know, take care of behaviors that are both dependent on your acute and long term success. And I think for you know, young adults, especially entering college, a lot of that burden is now for the first time on the student themselves. And especially when you're constantly navigating, meeting new people, and many of the students that either start chapters are coming to college, where everyone around them just knows, you know, they've been in a very similar K through 12 school system, or they, you know, they've been the kid with with the pump at school, where it's just their best friends know, and I think I realized when I was a freshman, that it takes years to build friendship and a long time and it's not like you're gonna offload your life about diabetes and all the teeny weeny details that go with it. It is really isolating, especially now with with COVID to constantly kind of pack and unpack the invisibility of diabetes like all day, every day. So my advice for parents listening is to really start having those conversations in high school, you know, not two to three months before you're going off to school. ask them some questions talk about how you're feeling. Talk about how you're going to have those conversations. It's really, really hard. But I think it's so important to just be honest. How can I help you? What do you need for me? I'm here if you need anything, because I think it's the person living with diabetes is just there's so much weight physically and emotionally on their shoulders.

 

Stacey Simms  15:18

She let me go to you on that. When you're hearing her say have those conversations in high school? Is that what you would tell teenagers parents now?

 

Right back to Shay and Haley answering that question. But first Diabetes Connections is brought to you by Dario Health. Bottom line, you need a plan of action with diabetes. We've been lucky that Benny's endo has helped us with that and that he understands the plan has to change. As Benny gets older, you want that kind of support. So take your diabetes management to the next level with Daario health. Their published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one c within three months and a 58% decrease in occurrences of severe hypoglycemic events, try Dario’s diabetes success plan and make a difference in your diabetes management. Go to my dario.com forward slash diabetes dash connections for more proven results and for information about the plan.

Now back to Shay answering my questions about whether she'd recommend having conversations about advocacy with high schoolers.

 

Shay Webb  16:27

I would and I wouldn't at the same time. And I say that the say as Anna and Haley No, I was taught at a really young age, I had to start having those conversations when I was in elementary school, I would be that fourth grader. You know, my mom would stand behind me and I go up and tell them okay, this is my insulin pump. Okay, this is what a blood sugar kit is. And it's like I tried it felt scripted at first, like, Okay, this is what you say, this is what you show. But as you keep on growing and maturing and getting older and getting exposed more, it'll flow like clockwork, in a way. So the by the time you get to college, you get around your professors, you get around your arrays, you're not as intimidated, because you've done it for so long. And I also think the you know, the younger you started, the more comfortable you are when you start the better. And that's to say even though you're doing that, and you're advocating you're telling people what you need, you're also influencing someone else who's watching you from the sidelines. And you don't even know it half the time until later. Sometimes you don't ever know it. But like analysts saying diabetes can be really hard to unpack sometimes having someone there as that model as that guide to say, Okay, I guess this is acceptable to do especially growing up as a teenager as a preteen where you have all these peer pressures, or this doesn't look cool, like this looks cool. Be that model. You don't have to exactly be the extrovert or the person who's in front of everybody. But just find ways that you feel comfortable to express your advocacy in different ways that you can get your needs across. And if you get yours across most likely it's going to help someone down the line who hasn't even thought of those things yet.

 

Stacey Simms  18:09

Haley, I'm going to ask a slightly different question. As Anna alluded, my son is a sophomore in high school, he is 16. He was diagnosed he was two. So he is very independent. He is very used to talking about these things. But I do think college is different. I do plan on having these conversations with him. I do anticipate him saying, Mom, I do not need this. You know, Mom, I don't need this. I don't need you to talk to me about this. I roll I roll. So Haley, let me ask you, there's a difference between an eight year old all due respect Shay, or you know, a 10 year old saying, here's my pump, I'm cool, right? And then a 17 year old or an 18 year old going I'm so sick of this diabetes, crap, I'm going to college and nobody needs to know. Right? So you know, what do you tell students like that?

 

Haley Owens  18:48

Well, it's really difficult, right? Because I know people in their late 20s, who still have that attitude that they do not want to share or disclose any information about their diabetes. And there's no one right way to do self advocacy with diabetes, because I think what self advocacy largely depends on is Ally ship and what you're ultimately asking people on the receiving end of that conversation is will you be my ally? And that's a consensual question. That's a conversation that people can say yes to or they can say no to. And I know of a lot of younger children who are excited about diabetes, and I have the same attitude. I love diabetes, and I hate diabetes. Right. I love it because of the community. I love it because of the advocacy. I love it because of the resiliency. And I hate it because of all of the I think the hurt that goes along with it. Right? That's there is no you're not going to deny that to I think go back to your question though. You know, I think a lot of parents will say it was the same way from you Shay, to you know, like when I first went to school, I went back to school after getting diagnosed. My mom is a nurse right? So she said like, when you go up to your teachers, I want you to say I'm a diabetic And here's my supplies. And here's what you should look out for when I'm low or when I'm high. And that conversation was largely geared towards teachers. And I think for the most part, they saw me a nine year old child and said, you know, of course I would do that, right. And as you get older, I think sometimes the disease itself wanes on you, and it wears on you, and you don't want to be as visible about it, and you don't want to disclose that you have it. I also think that ally ship looks different when you get older, because people assume, yep, there's my pump, too.

 

Unknown Speaker  20:31

I was gonna yelling,

 

Stacey Simms  20:34

excuse me, I was going to mom, and I wasn't gonna yell it was muted.

 

Haley Owens  20:42

I had some coffee. And let me just say like, coffee is like a whole other conversation to have. It's like the worst. But anyway, so I like shit looks different when you get older. Because I think that people start seeing you more as an adult, and assume that you know what you're doing, and assume that you should be taking care of yourself. And they assume that this is not my responsibility. That's your responsibility, right. And I have been in situations where people do not want to know about my diabetes, I've disclosed that I've had it to them. And they say, I don't want to part of it. I've had other people in my life who have said, this is great information. Thank you for telling me and they start carrying candy in their book bag, and they start checking it with me each day. They're like, Hey, how you feeling? I'm like, I'm feeling Okay, thanks for asking, right? Because I know where that question is coming from. So I know where parents are coming from when they encourage their child to start advocating for themselves. Because I think that largely, it's coming from a source of peace of mind for them. And safety, you know, that as long as my child is disclosing this information that they're going to have people watch out for them, and people will know about it. And it's largely a safety thing, right. But I think to your children also have this gut feeling about who will come to the frontline when they are in trouble, and who will be there to be their support system, or who is around them that will judge them. And so I want to caution parents not to I think try to force self advocacy on their children, because I think that that will largely come very naturally, as your child starts to develop and get older, and starts to develop their identity with this disease. And I think ultimately, your child has a deep down gut feeling about who they want to tell that they have diabetes, because they know their support group best. They know the people around them best and they know who will support them, and who will not support them.

 

Shay Webb  22:34

I can completely agree with Haley because I've personally seen it where I've gone up to you know, teachers or professors trying to explain to them and the responses I've gotten were okay, you need to take that up with DRC and the Disability Resource Center. And before I can show them anything, they're like, Okay, I have to go to office hours, whereas I have friend, right, I've met in college, and they could call me and I'm like, Hi. And they're like, what's wrong with your blood sugar? And I'm like, I'm there like, no, you're not, I can hear it in your voice. And

 

Unknown Speaker  23:04

I'm like,

 

Unknown Speaker  23:05

Am I home? Why?

 

Shay Webb  23:08

And it's like, sometimes it's the people, you don't expect to pick up on things who actually pick up on it, rather than the authoritative figures who you're expected to report to, don't always want to pick up on it, or want to actually have responsibility for it. Because they feel like if they have responsibility for it, that's their liability, when in reality, it's your diseases, your body, we just need your ally ship, we need you to be sponsors for us in places that we can't be actually be support. Going back to your point of being invisible. I think that's where some of it comes in, as it's not exactly always invisible to us. But other people try and make it invisible as well. So they make it seem like okay, it's the invisible disability. So you're going to be like the normal student who can do everything who's going to get the assignment done on time, you don't need extra time. You're just in that category, because I don't see what's wrong with you. It's like the wilted flower category, you see a perfectly standing flower, but it hasn't had water. It hasn't been taken care of. And it's just like wilting on the inside and people don't see that Shay,

 

Haley Owens  24:17

Can I just add one thing too, because I think Shay, like so many nails were hit on the head and that lovely statement, because I agree with everything you just said. And I really think that when people label diabetes. Uh huh. Sorry, when people label diabetes as an invisible illness, I don't think they truly understand because I don't even label this disease as visible because it's not because anybody who has been around this disease for long enough knows that this disease lives on a spectrum of visibility. There are some days where I probably look and I probably act like everybody else, and there's days where I am absolutely exhausted, mentally, physically and mentally. blood sugars are all over the place. And I'm low. And I'm not myself. I've had many conversations about this where people almost want to categorize me and say like, it's not that bad, or diabetes is not that bad, because it is so invisible. And I have to kind of check people on that rhetoric and say, that actually is very ablest, you know, like, I have to check people and say, it's not invisible to me. But diabetes does live on this spectrum. And it's not stagnant. I don't act and I don't perform, and I don't, I don't do things the same way with diabetes each day, it's not a disease that I just take a pill or I just do one thing. And then it's good, right? It's it lives on the spectrum, that's always changing day by day, and it affects my mood, and it affects my emotions and affects my ability to perform. It's not always invisible, like what people, you know, assume it to be,

 

Stacey Simms  25:49

and I love you, for you back in. Because from a parenting perspective, Shay and Haley have said a couple of things. Frankly, that makes me a little bit nervous. And I'd love to know how you would help students not necessarily parents advocate for themselves, if they have professors, or they run into staff who beyond not wanting to be an ally, doesn't want to hear it. I assume that CDN, even if there isn't a chapter on whatever campus students are, there are resources or best practices. But no, what do you do if you come across somebody who just says don't want to hear it? Sit down? You're not even in my class?

 

Anna Floreen Sabino  26:23

Yeah. I mean, and honestly, you know, we CDN has a pretty active parent Facebook group, and a lot of people, you know, roll their eyes at Facebook, or there's just it's this constant back and forth of of conversation. But I will say that the parents of the college diabetes network, which is the name of our parent, Facebook group is awesome. It is a lot of conversation. It's a lot of support, does anyone have an endo? And I know we're supposed to be talking about students. But I will say that accommodations, and is probably one of the most asked about topics. So you're you're right there, Stacy, in terms of, you know, talking about self advocacy and ally ship around people getting backlash and potentially discriminated against on college campuses, CDN recognizes this, and we realize that, you know, not everybody to Shea's point is going to be that look at me, I have diabetes, I'm going to change the world because of my diabetes, attitude. And because of that, we want to make sure that we can, as an organization, reach, you know, all young adults and keep all young adults safe or as safe as possible while they're on campus and preparing for that campus life transition. So we have turned some of our resources into what we call a reach initiative, which is a slew of resources geared specifically towards, you know, Office of Disability and accommodations, health center and Counseling Center, we know that the majority of our students, you know, don't necessarily utilize the health or Counseling Center for their primary, you know, diabetes care, and that's fine. But we do recommend that the health center on the receiving side, you know, is up to date, and well equipped and prepared to serve the students when they're coming on campus. Because that we know that they're not necessarily required to take, you know, a diabetes class, you know, every year where I remember going to the health center being like, why is that? What is that beep Oh, is that your cell phone or your pump? I'm like, well, it's both. So it's that constant level of burden of education. And that is kind of what I'm talking about in terms of the invisibility and that that Wait, we always recommend students register for accommodations. And even if you don't end up meeting it, you know, it's like, kind of having car insurance, or health insurance. You know, it's kind of that in the back pocket or that letter when you first take your first airplane ride or your prescription on the box of that humalog vial for those just in case moments. And you want to make sure those are in place. And what I've realized, too, is that there's always going to be people in your life, whether it's a professor, whether it's a friend, whether it's a future boyfriend, or girlfriend or partner, that may say things to you that are just crappy, and maybe they're not going to be your ally. But if we reframe it and turn it around into, okay, what knowledge and resources do I have in my pocket where I could better advocate or better educate, and that's why the registering for accommodations right out of the gate is really what we encouraged for both parents and students to feel better equipped and more comfortable and building that sense of community and ally ship as soon as they get to campus. So for parents and you know, high school seniors, and even college seniors who are looking to find a job or a summer program or internship to get involved in start thinking about what those points are, you want to kind of discuss in in talking about getting accommodations or talking about your diabetes and what your needs are well in advance. On that note, Shay, you've

 

Stacey Simms  29:55

graduated Haley, you're going to graduate soon. I was wondering if You could take a look back over your time in college and kind of think of a time where it didn't go well, you know, where somebody didn't help you where you had to find a workaround with diabetes. And even if it didn't work out perfectly, in fact, it's better if it didn't, in my opinion, I'd love to hear about what you did.

 

Right back to the conversation, but first Diabetes Connections is brought to you by Dexcom. And Dexcom has a diabetes management software called Clarity. Do you use this for a long time, longer than I would like to admit, I thought it was something just our endo could use. But it's really helpful. And now I have it on my phone, you can use it on both a desktop or as an app, it's an easy way to keep track of the big picture. I find I use it when we're adjusting things which felt like it was non stop there for a while. But at age 16, Benny seems to be leveling out on growth and basil rates at least for now, clarity really helps us see the longer term trends and helps us not overreact. The overlay reports help with context of various glucose levels and patterns. And when you share the reports with your care team, it's easy for them to get a great idea of what's going on, and how they can better help. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at Diabetes connections.com and click on the Dexcom logo.

Now back to Shay and Haley answer my question about when something went wrong, Shay starts us back off.

 

Shay Webb  31:28

So I have a couple in two different categories. And one of them had to what's pertaining to my actual class, and I had been sick the whole week. And when I get sick, my blood sugar gets sick and everything else goes downhill. And we had this really big exam coming up and throughout my sickness, because I've always been someone who's really dedicated to her academics. But throughout while I was sick, I was still continuing the studies still looking at my notes and everything. But it came to the day where I'm like, I'm just wiped out, I really can't do anything. And even you know, some of my classmates and other professors were coming up to me like, okay, I can barely hear you like, This is crazy. But I had that one professor where I had to take this exam. And he's like, Well, no, I'm not changing the exam. There are other students who cheat who do this. And I'm like, Well, I have an accommodation. I was sick. This is the situation. It's not like I was just trying to get out of the test. It's not like I went to the beach all day and didn't study. And they're like, you know, that's just the way it is. So being a CDI advocate, I went to the DRC. And I told them everything that happened, and they reached out to that Professor. And luckily, I was able to take my exam and keep my grades up. But if I hadn't have had that accommodation, which originally, I didn't think I needed it that much. And it definitely took a toll. At least I felt I mean, my grades were still good, but it definitely was that feeling of assurance afterwards. But if I hadn't had that commendation, then I knew it could have been a lot worse. And then fast forwarding to when I lived on campus. And there would be some nights, it seems like everything would just go wrong, where you know, like, okay, there was one day, my Jews, there was like something wrong with this, I had to throw it away. So I'm like, Okay, I'm low. I need juice. But luckily, we have machines in the building. So I go find a machine, and it is completely empty. So I'm like, Okay, cool. So that means madmen, I have to walk to the campus convenience store, which wasn't too far. But I have rheumatoid arthritis, and I have low blood sugar. So that's two things working on me then making it extra hard to do. And I said, You know, I have to tell someone, some type of authority, that authority figure about this problem. And when I did, the response I got was, it was a slew of responses. But the biggest one that I remember is that, you know, universities just aren't disability friendly. And that's just the way it is. And you know, that's not on us. If you want to talk to the people over you know, the school system or over all the policies go talk to them. So as a younger student, and as someone who's you know, already trying to handle her diabetes in college, those kind of like a slap in the face to think that someone who is supposed to advocate for their students who supposed to care for their students would have that type of approach and that type of response. And I made that authority figure aware that especially like for other students like myself, who may come see them, it's already implementation enough to come and see someone have such a position of such power. But to get that response, when you know, you come for convocation, you come for orientation. Everyone says, Come see me if you need me. And then you need them. And it's like, well, I can't help you. And this is why And it's not even the Jets, you know, you can't help me. But for anyone who can't help us with this type of situation, it means more to say, I can't help you. But I'll find someone who can, or I'll find the resources that can rather than saying you're on your

 

Stacey Simms  35:14

own, Haley, anything come to mind?

 

Haley Owens  35:16

Yeah, I first I just wanted to Sure. I think all of us because I've had to do this too, when being let down by these big systems because it can feel like betrayal, right? What what this gets to is it feels like betrayal, when you enter a university setting, or you enter the workplace, right? Because this is not isolated to just college or university. And they say, we can't help you. We don't care, right? It feels like betrayal. I want to just address the big elephant in the room. And it's that the question is like, well, who will care about me? Right? Like, what answers Do I have now, if I go now, right. And I think that also, these conversations may also strike up a little bit of fear. And some of the parents listening like, yikes, right. And I want to say that it's true. The transition from elementary school to middle school to high school, the response and the call to action and come to the frontline, that parents and families request of teachers and the educators and the principal's the response is different, right, because those teachers, I think, have some sort of obligation to respond, professors and university not so much. And really, they professors largely are told that if a student has any issues with disabilities, or accommodations, that you just refer them to the Office of Student disabilities. So professors and educators in a higher education setting don't really get involved. And some of them want to help, but they don't know what to do, because we're not given that support. So there's a lot of work that needs to be done in higher education to support students with all disabilities period, there is a lack and there's a need. But yeah, a few things come to mind for me when I was told no, or the door was like shut in my face, and I had to go somewhere else. And one of it was when I first went to college, and I chose to live with like in a normal dorming situation, right? It was like myself and a roommate. And then we shared a bathroom with another two other girls. And I love my roommate, she was so nice and so friendly. And she still is. But the problem was, was that this young woman was nocturnal. She would sleep literally all day, and she would stay up all night and work. And it wasn't because she had night shift or anything like that. That was her schedule. And she would leave the overhead light on, she would refuse to turn it off. And that absolutely just disrupted my whole sleep schedule, I was starting to sleep during the day, I was starting to sleep in between classes, I would sleep through meals, so the dining hall would close. So then I would have to resort to eating something that was like pre packaged. Anyway, what ended up happening was that my numbers were either in the four hundreds, or they were in like the 50s all the time. And I ultimately ended up getting really sick, I just was really, really sick. I gained a lot of weight the first semester, the first half of the semester, and then I lost a bunch of weight. And it just was all over the place. So I was really sick by the time the semester came to an end. And that was the first semester of my college experience. And when I went to the the Office of Student disabilities, and I said I can't do this anymore. I need to single room accommodation. Can you give me something I was told no, because the single rooms were ADA compliant. And they had a limited number of ADA compliant rooms available. And those rooms were kept in reserve for students who were wheelchair bound, or had some sort of external devices to help them navigate across campus. And so that wasn't really for students like me, what they failed to tell me was that there were other ways of getting a single room that was not through the Office of Student disabilities, and that I would have to go through residential life to get that they didn't tell me that. So I was over here for like a month thinking, I can't get out of this situation. I'm stuck here. And there was no communication to these other resources. What ultimately became of that was we had to seek a lawyer to help us because it got to that point to where my liver enzyme level was so high that my doctor was fearful. My liver was just like being overworked. Right. And actually, later on, we found out that that was because I actually had gone into decay. At one point during that semester. We just didn't know about it. But I knew I was sick. I knew I was very sick. So we ended up getting some guidance from a lawyer and they ended up writing a letter to the student disabilities office. And that was the domino effect right there. That was the tipping point where then I was told all of the information that I needed to know to get a single room, but up until that point, the door was in my face, they would not help me. And each time I would reach out to the office. They said we can't help you like there is nowhere else we could go there was but it just wasn't through your office. So that was like the tipping point for me. fidan sounds really hard and really cruel. But I think one of the things that was really helpful for me was that like people believed me. And I believed in myself, like I knew my worth, I knew that I was worthy of this, I needed a single room because I was sick. And I would not take no for an answer, I needed it. And I had to keep going, I had to keep pushing. And what became of that was, I did ultimately get a single room through residential life and getting a single room through the residential life, I was just by chance paired with other students with disabilities on the campus. And I ultimately became friends with three amazing, wonderful young ladies who also have a disability, or multiple co occurring disabilities. And we are each other's allies in this way. And if I have an issue on campus, or I need somebody, I can call them, I really had a wonderful network come out of that situation. And the other thing that I think that is still a work in progress is something that I see all the time is the whole issue with getting a doctor's note, when you're sick. And Shay, you could probably chime in on this too, each time you're absent, or you're sick, they want a doctor's note, each time you miss a lecture, they want a doctor's note, you know how expensive it is to get a doctor's note, it's not easy, right? Because what that implies is that you actually went to the doctor. And everybody knows that, because I don't feel good because of diabetes doesn't mean that I need to go to the doctor, I need to take a day off. And that's what the health care system sets you up to do is, you know, you are individual now living with diabetes, you're going to have a stomachache, you're going to have aches and pains, you're not going to feel good some days, but you know what to do take insulin, do ketones, do all of this stuff. And if it doesn't resolve or get better, then you go to the doctor, right? But the first line of action is not to go to the doctor, it's you figure it out, when educators and professors come to me and say, Hey, you weren't gonna you know, you weren't lecture the other day, what happened? And I say, Hey, I wasn't feeling good. Where's your doctor's note? I do not have one. And I do not need to go to the doctor. And that was something that was briefly addressed with COVID was this idea that to extend grace to students when they're absent, right, when COVID first hit, and we were just going into quarantine students were getting sick. And University of Maryland released a public letter addressing faculty saying, if students are absent, just excuse them, right? Because people are getting sick. And I said, in one of my classrooms, I said, kind of aloud and addressing a whole class of so Wouldn't that be nice if we could always take that same attitude of extending grace to students with disabilities? And we didn't hound them to get a doctor's note each time they were out? Wouldn't that be restorative? Wouldn't that be moving us forward? The other thing I will say is that I think that what came out of this was a life lesson, right? One being No, you're worth two is never settle. Don't take no for an answer. I hope that that was sufficient.

 

Stacey Simms  42:50

Yeah, well, that's how we get to those life lessons. But Shay, you

 

Unknown Speaker  42:53

definitely look like somebody out there.

 

Shay Webb  42:55

Like Haley said, it's interesting. She had a class example. And I had an organization and kind of student or example because I wasn't really involved on campus. And some of my organs, they were based off of participation. So if you didn't show up, you could get fined. So there would be times rather than the professor, or the director addressing me, it would be other students like, Oh, well, you weren't here at such and such time. But you can go to the library or your home. Why is this, we see your car here. And it's like, I can't always be where I need to be because you have to read, like, digest everything, just recollect yourself and get your blood sugar down. Because sometimes, especially if I'd come home from work, and my blood sugar would be high, I just feel like crashing on my bed. And if anyone will tell me anything, it's not like I would be able to comprehend it. And then going to Haley's roommate example, I forgot I had a roommate example like that as well. Because, interestingly enough, but when it all started off interesting, because how the dorms were set up, or they were apartment style dorms. And one side was like a single room and a single bathroom. And the other side had two rooms and one bathroom. So I arranged with the girl who was already, um, thought would be rooming with Well, they were both friends, if it would be okay, if we switched because of my condition and how everything was set up. And she said that would be fine. Well, the day came and she got in there before I didn't already set up even though we had made an arrangement. So that was the first issue. second issue is, as you can see, as you've heard, a lot of times our alarms will go off at the most random of times, whoa, my roommate did not like that I had so many alarms and that I needed to you know, get those in check. And, you know, keep them quiet and I'm like, Well, I can't do that. So I'm not really, really sure what to tell you and pertaining to getting accommodated housing, I had the same problem as Haley. Because before I got to college, I did a lot of research. And I asked them, okay, what's the accommodation for students with diabetes with disabilities. And the response I got was, housing can be really difficult. And we've had diabetic students come in before, but you're probably not going to get any accommodation for it. And that did not make any sense to me, considering one of our first symptoms is frequent thirst and frequent urination. So if you're rooming with two three other people, or sometimes even 12 other people, how are you going to be sure that you have always guaranteed access to what you need. And I don't think that there's enough preparation on that end. So I definitely get Haley's points. And to add to it, I would say, you know, just continue to recognize because people will give you their opinions, and they will give you the policies that are in place. But as a parable that I think about sometimes is if there's a fence, and you can't get to the other side of it, you should move the fence so that it includes more people. So I feel like that should be the same thing with these academic institutions with these workplaces. We have to make it so we can include other people, even though you know, we can't change who they are, we can change the policies in place, we can change up the rules.

 

Haley Owens  46:28

Yeah. And some people will say, we've had diabetics do this before, and they didn't ask these questions or whatever. I'm not like all of them. I have not like that. And some people really do think that this disease looks the same for everybody. It does not. And so just because somebody says we've had diabetic students before come through this program, and they did really well, doesn't mean anything.

 

Stacey Simms  46:51

Let me go to you. And it just to try to, I don't know if we can wrap up these amazing thoughts, and all of these great words for the students. But I think the point of it really does change and never ends. You know, I mean, you're going to go to the workforce. We are getting older, I have friends who pointed out to me that there is a now menopause for type one women Facebook group,

 

Anna Floreen Sabino  47:11

right? I mean, these things never. Well, I think the the message even after just listening to all due to both Haley and Shay is that we are in a constant transition phase. And CDN is focused on a lot of the transitions and really fostering independence for the young adult. And the biggest takeaway message that I got from both of you and that I want to highlight from CDN is that lets you be on be your ally, and part of this journey. And even if you don't want to start a chapter, or you're not ready to register for accommodations, or you're a parent, and your kid just really isn't interested in caring about their diabetes, right now, CDN is here when you're ready, and that independence takes time. Every single person's diabetes is different, whether you use a pump, whether you take 100 units a day, whether you take 20 units of insulin a day. Great point, Haley on the well, this is how I manage my diabetes. And it might be different. There isn't one size fits all, you look at a doctor's note, and there's, you know, 10 different patients with 10 different insulin regimens. So I think that's something just to keep in mind, especially for parents as we constantly are looking for support and maybe self judging ourselves in terms of Oh, well, this kid is going abroad, Why can't my kid do that? Well, everybody is going to be ready to master different things related to diabetes and life as a young adult at different points. So I want to highlight by saying, join our CDN young adult journey with us get connected. And best of luck to everybody who is graduating. Congratulations. And thank you both to Shane Haley.

 

Stacey Simms  48:44

Yeah, thank you all for joining me. This was an amazing conversation. I hope you'll come back and check in and I really appreciate it. Thank you so much.

 

Unknown Speaker  48:57

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  49:02

Lots more information as always at Diabetes connections.com. Or in the show notes. If you're listening on a podcast player, I've been hearing more and more about issues with Apple podcasts, which is the most popular podcast player and the probably the number one download source for this show. So if you are having issues and you can't see the show notes, you can't click on links, or you're having any issues. First, I'd love to know about that. And secondly, just go to Diabetes, Connections comm where every episode now has a transcript and has all the show notes and links easy to get I don't know what's going on with Apple podcasts. They made some big changes in May and it just hasn't been the same since.

Before I let you go. Just a reminder that we have our live newscast every Wednesday 4:30pm Eastern Time on Facebook in the news is something I started a couple of weeks ago and the reaction has been great. So thank you so much for that couple of minutes less than 10 minutes every week with the top diabetes news headlines. to round up, and then I'm releasing it as a podcast episode a couple of days later, we will be focusing quite a bit on so much technology news that came out of att D, the most recent conference that just wrapped up and looking ahead to other FDA approvals and research and whatever news comes my way I will pass along to you. Thank you so much as always to my editor john Kenneth from audio editing solutions. Thank you for listening. I'm Stacey Simms. I'll see you back here in just a couple of days until then, be kind to yourself.

 

Benny  50:35

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

Jun 4, 2021
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Hello and welcome to Diabetes Connections In the News! I’m so glad you’re here! I’m Stacey Simms and each week I’ll share the top diabetes stories and headlines of the past seven days.  Whether you’re joining me live on Facebook or watching or listening after, I’m here to get you up to speed quickly on what’s happening with diabetes technology, research, and a few fun stories from our community. Since these are headlines and summaries, as always, you’ll find all the sources and links in the Facebook comments and in the show notes at d-c dot com.

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In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know Stuff”

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here’s what’s In The News this week…

First, the annual A-T-T-D conference is going on right now. That’s the Advanced Technologies and Treatments for Diabetes Conference. As it just started, we’re probably going to get a lot more info from the tech companies in the next few days. Stay tuned on social for big breakthroughs and announcements and we’ll wrap it up here next week.

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Good News if you need to be in the hospital for some reason! The American Academy of Clinical Endocrinology has new guidelines that cover use of continuous glucose monitors, insulin pumps, connected pens, automated insulin delivery systems, telemedicine technologies, and smartphone apps. They also address safety considerations and special situations such as hospitalization. That’s really important because until now there has been NO official recommendation about letting patients handle diabetes management while in the hospital.

New AACE guidelines https://www.medscape.com/viewarticle/952127

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Could a CGM also continuously measure Ketones? JDRF is supporting projects looking to develop that kind of device. Here’s what they say in their request for letters of intent: Diabetic ketoacidosis (DKA) is a dangerous acute complication of T1D that is insufficiently addressed or even sometimes exacerbated by current therapeutic options. To fill this gap, JDRF invites applications to develop continuous ketone monitor or C-K-M functionality in continuous glucose monitor (CGM) devices.

As I said, this is a request so we’re at the very beginning of this but WOW… that would sure beat peeing on a stick.

CGM and Ketone Monitor https://grantcenter.jdrf.org/rfa/development-of-cgms-with-continuous-ketone-monitoring-functionality-for-dka-prevention-in-t1d/

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Follow up from last week – an FDA advisory committee gave the go ahead for the first drug shown to prevent type 1 diabetes. Teplizumab will now go to the full FDA and could be approved in early July. Teplizumab isn’t something you do at home.. it’s injections given over two weeks in an outpatient setting. The FDA doesn’t automatically follow the advisory committee recommendations and may ask for more info or research. We’ll keep following.

Teplizumab follow up https://www.healthline.com/diabetesmine/teplizumab-new-drug-to-prevent-type-1-diabetes

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A new National Institutes of Health study aims to improve gestational diabetes screening and diagnosis by better understanding blood glucose levels throughout pregnancy

During pregnancy there are changes in glucose metabolism but the details of these changes are unknown. The Glycemic Observation and Metabolic Outcomes in Mothers and Offspring study, or GO MOMs – will use CGMs to study more than 2000 women in their first trimester.

This is a follow up study to HAPO – which isn’t quite as fun a name.. which looked at high blood sugar during pregnancy.

Gestational diabetes BG study https://www.nih.gov/news-events/news-releases/nih-launches-study-determine-best-time-gestational-diabetes-screening

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Tidepool adds Control IQ to their long list of viewable data. If you use Tandem’s t:slim X2 pump with Control-IQ™ technology, you can now view all of your data, including all of the unique hybrid closed loop events in your Tidepool account. Tidepool is awaiting FDA approval on their own Loop system and they also launched a unique – and in my opinion  - much needed period project to start tracking how menstrual cycles affect blood sugar in in people with diabetes.

https://www.tidepool.org/blog/tandem-control-iq-technology-and-tidepool-officially-supported

Do you have a diabetes tattoo? News on who’s looking for it coming up

but first.. quick break – want to tell you about one of our great sponsors who helps make Diabetes Connections possible.

  • Inside the Breakthrough is a podcast that mixes historical wisdom with modern insight – it’s a science show that’s also entertaining. I love it. The latest episode talks about scientists who knew they were onto something but needed to see things with their own eyes. How actually seeing something like a Kraken? Makes a huge difference. It also meant a name change for what some thought had only been a myth. And this actually relates to diabetes! Listen to Inside the Breakthrough wherever you listen to podcasts..

Back to the news…

Indy driver Conor Daly led the most laps in the recent Indy 500 but another car’s crash took him out of the race. Daly lives with type 1 – he was diagnosed at age 14. Another driver left his pit before the 4th tire was secure – when it rocketed around the track, it crashed into Daly’s car. He wasn’t hurt but it took him out of the lead. Conor drives the No 20 Mannkind Chevrolet – the makers of Affezza are his sponsor.

https://www.indystar.com/story/sports/motor/2021/05/30/conor-daly-finishes-thirteeth-indy-500-after-tire-hits-car/5038239001/

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From this week’s podcast episode! If you have a diabetes tattoo Banting House wants to see it! I spoke to the curator of the museum, know as the birthplace of insulin – it’s where Dr. Frederick Banting woke up with the idea that led to that great discovery. They are starting an exhibit “of ink and insulin” and they want to see your diabetes related tattoos. Of course, that link – and all the others in the Facebook comments and in the show notes at d-c dot com

https://bit.ly/DiabetesCxns383

https://bantinghousenhs.ca/2020/01/16/of-ink-and-insulin/

 

That’s Diabetes Connections – In the News.  If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com.

Please join me wherever you get podcasts for our next episode -Tuesday – you’ll hear from college students ready to graduate or already there. What they want young adults -and their parents – to keep in mind.

Thanks and I’ll see you then!

Jun 1, 2021

2021 marks 100 years since the discovery of insulin and we could think of no better place to hear the story of how it happened than from the folks at Banting House. That's literally the house where Sir Frederick Banting woke up with the idea that led to this life saving discovery.

Curator Grant Maltman shares stories and takes us on a bit of an audio tour of the House. He explains how Dr. Banting got started, made the discovery (with help of course) and what the museum is doing to mark the occasion. It's a very interactive museum with everything from a letter writing campaign to Dr. Banting that's still going on, to a display of diabetes tattoos from around the world.

More about Banting House

Stacey also shares her idea to mark 100 years of insulin - with your help!

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!

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Episode Transcription below: 

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, we're talking to the curator of Banting House, which is known as the birthplace of insulin. It's literally the house where Sir Frederick Banting woke up with the idea that led to this life-saving discovery.

Grant Maltman 0:40
We're celebrating the 100th anniversary of the discovery of insulin. 100 years later, we have better insulin, what we still don't have is anything better than insulin. And that's what makes this place so important. It's why people come here, you know, we hear the words, like pilgrimage, we have people refer to us as a "Diabetes Mecca."

Stacey Simms 1:00
Grant Maltman shares stories and takes us on a bit of an audio tour of the house. We're also cooking up an idea to mark this century of insulin anniversary, but I'm going to need your help. 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, always so glad to have you here we aim to educate and inspire about diabetes with a focus on people who use insulin, and Banting House is one of those places I would really like to visit. Hey, everybody, I'm Stacey Simms. I am your host, my son was diagnosed more than 14 years ago with Type One and my husband lives with Type Two. And you know, obviously, insulin is incredibly important to us and everybody listening to the show, as you'll hear people travelled to the museum, not only to learn more about history, but also in the hopes that they will be inspired, with a bit of an aha moment, like Dr. Banting was. The curator, Grant Maltman, will take us through more of the exhibits and the history. I'm not going to do that here. But I do want to let you know, there is a brief YouTube video that I've put out that goes along with this episode, you're gonna hear almost at the end of the interview, Grant turns the camera on and takes us through part of the exhibit. So you can listen to that. And we really get the idea, but I thought you might also want to see it. And so that's on YouTube as well. I will link that up in the episode. And it's always a good way to mention that we have links and information for every episode at Diabetes-connections.com, in addition to the show notes in whatever podcast app you may be listening to, but some of those apps don't really show the notes very well. And they don't hyperlink and all that good stuff. So you can always go to Diabetes-connections.com. And please stick around after the interview. I want to run an idea by you for kind of our own way on the show here, for you to take part of marking 100 years since Dr. Banting's discovery. So stick around for that.

But first Diabetes Connections is brought to you by Dario Health. And over the years I find 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 on how to succeed. Get the diabetes management plan that works with you and for you. Dario's published studies demonstrate high impact clinical results, find out more. Go to mydario.com/diabetes-connections. Grant, thanks so much for joining me. I'm really interested to hear more about your story and share about the Banting House. Thanks for being here today.

Grant Maltman 3:54
Oh, my pleasure. This is going to be fun.

Stacey Simms 3:56
Yeah. All right. Well, let's just start with the, you know, very generalities. Can you tell you what Banting House is all about?

Grant Maltman 4:02
Well, Banting House since 1923, has been known as the birthplace of insulin. It's Frederick Banting's former home where he came up with the idea that led to the discovery of insulin. It was purchased by Diabetes Canada in 1981, declared a National Historic Site of Canada in 1997, and are now full museum open to the public.

Stacey Simms 4:24
When you say the birthplace of insulin, tell me the story. What does that mean?

Grant Maltman 4:28
Well, this is always history. So everyone knows or you know, we'd like to help everyone know, that the discovery of insulin occurred at the University of Toronto during the summer of 1921. Like every great story, that's neither the beginning nor the end. And so the origin story for insulin in this context anyways, is this house. So Frederick Banting is a struggling general practitioner in London, Ontario. After the First World War, he couldn't get a job in Toronto as a house surgeon. So he came here to set up a practice and this wasn't an "open it and they will come" scenario. He does everything wrong, he moves to a city where he doesn't know anyone. He doesn't take over a retire doctor's office. His office hours are terrible, 1-3 in the afternoon, seven to eight in the evening, his location isn't a great spot to set up as a private practice, it's not a high traffic area. You could put your name on the front window, but there's big silver Maple up front, and no one's going to see it. So he's literally 0 for 4, or even the phonebook. He failed there too, the phone book was printed in April, and he doesn't move here until June. So he opens his practice on the first of July 1920. His first patient arrives 28 days later. And according to his memoir, it's not even a real medical problem in 1920. In Ontario, we're still under the Prohibition Act. And according to Banting's memoir, anyways, he writes an illegal alcohol prescription, illegal alcohol sale. So our great Canadian hero starts off his career as a modern day bootlegger. While the practice slowly starts to grow, it's not enough to pay his bills. And so he takes a job at Western University at the Medical School where he's literally a day or two ahead of the students, he takes this opportunity because of the income. Each lab that he does is $2 an hour, which is great, considering his entire July income was $6. So three labs in the early fall of 1920. He's gonna equal his entire July income, things are progressing well. And towards the end of October, he's asked to prepare a lecture on the subject of the pancreas and diabetes. And one of the the myths around the discouraged insulin is that Dr. Banting was on this lifelong quest to find a cure for this disease because a 14 year old boy or girl, friend or cousin, depending on his telling his story, the key is, this, it's a young child, had diabetes, that Banting knew. This child died, "Okay, well, I'm going to grow up, I'm going to go to medical school and find a treatment for diabetes," not the case at all. He's scared to death because he has to give a lecture on a subject he knows very little about, he had never treated the patient with diabetes, he knew that the only treatment was, was the Allen diet was the standard diet, the starvation diet. Once you're on that diet, your life expectancy is about six months to two years. So we can't do much of a lecture on four or five senses. So on the 30th of October, he reads everything he can and prepares his lecture. And then that evening, when he goes to bed, he takes to bed his surgical journal. He always likes to read himself to sleep. And he opens up this journal by Moses Baron. And it's a survey article on diabetes and diabetes research and what a great opportunity to read this, perhaps there's something in this that I can incorporate into my lecture. And so he reads the article, turns out the light and goes to sleep at 2am. After a night of restless sleep, he rises for bed and puts to paper 25 words that will change course of diabetes research and diabetes history. It was a restless night of restless sleep. "After the lecture and the article been chasing each other in my mind for some time, the idea occurred to me. I got up, I wrote down, I couldn't stop thinking about it. Those 25 words leaked that first crude farm insulin 10 months later, after only about 12 weeks of experiments."

Stacey Simms 8:16
So I had never heard that he was interested in this as a little, you know, as a young kid, but I had heard about him, you know, waking up in the middle of the night. So he wakes up and what he writes isn't, you know, "We're gonna change the course of history and I have this idea of how to, you know, discover insulin and administer it to people." He basically writes out what you said.

Grant Maltman 8:34
What he writes is, it's a 25 word hypothesis. (Inaudible) who came through here says it's a modern day post-it note. He writes "diabetes ligate pancreatic ducts of dog keep dogs alive to a senile degenerate leaving islets. Try to isolate internal secretion of these and relief glycosuria." So those 25 words got him lab space, a research assistant, and a Nobel Prize. (Muffled) years to the day of writing it down. And one of the great ironies, co-discoverer of insulin can't even spell diabetes correctly, he's a terrible speller. But as a physician, he's got great penmanship. So everything we can read, which is great for the public record.

Stacey Simms 9:17
Wow. What does he do after that? Does he go and give the lecture as planned? I, you know, as you said, it wasn't overnight that things changed. This was the beginning. But what happens when he gives the lecture? Does he include that hypothesis?

Grant Maltman 9:29
We don't know that. We do know that he was pretty excited and spoke to a couple of colleagues here in town. He literally, Banting can sometimes be like a bull in a china shop. It's like, hey, I've got this, let's go. But unfortunately, Western's medical school, the number two school, was still under construction. And we see we just didn't have the facilities or expertise here. When he's speaking to his colleagues at Western and one of his former classmates who's living here in town, they encourage him to go back to his alma mater. He's going to be in Toronto in mid-November anyways, so why not go speak with Professor John McLeod, head of the physiology department, a leading expert in the field of carbohydrate metabolism, and go and run your idea by him and and that's how things got started.

Stacey Simms 10:16
When we're talking about Banting House, this is the house where he woke up and wrote that down. What do people see when they come through? You know, I haven't had the opportunity yet to travel there. It's definitely on my list.

Grant Maltman 10:28
It's a really interesting museum. We often catch people by surprise because you say Banting Museum, the first thing you think of is insulin, understandably. I'm doing this podcast from the bedroom where it occurred right now, and it's our probably most important room in the gallery, but the museum is a biographical museum, letting people know who he was and what he was about when he lived here. He actually only used three rooms in the house because the people he bought the home from, their new home wasn't ready yet. He's single, doesn't need the whole place. So he says, why don't you stay? This way, you know, they can pay the water bills and electricity bills, so, and ended up feeding him and bringing patients as well. So under our designation, we have to restore the three rooms that he did occupy. So as I said, I'm in the bedroom where we restored right back to the original wallpaper. His office is set up, as well as a small apothecary. So you get to understand what it was like to be a 1920s private practice for a physician. The rest of the house we tell his life story. So, we feature his art, he was a pretty good painter, very good friends with Canada's most famous painters and export the Group of Seven. Art was a, painting was a hobby, started here in London. One patient, 28 days, gives you a lot of free time. And so he started up like everything else, off to a bad start, buys watercolor brushes, which are tiny, thick oil paints and tries drawing pictures from magazines, sort of. They're not very good. In fact, we have the one that was donated to us a few years back, is the only surviving painting from 1920. And it's done on cardboard from the laundromat because he couldn't afford artboard. But then we have one of his latest from 1937, was a wonderful image of the Quebec landscape which really shows his growth as an artist. He, we have a an exhibit gallery that covers his career in the First World War. He's a decorated war hero, Military Cross winner from September of 1918. During the last 100 days, he's wounded in the arm and refuses to evacuate to the rear. As for his actions that day, he's awarded the Military Cross, which is the second highest honor in the British Empire. And so three years before they discover insulin, Banting is actually a decorated war hero. But as Canadians we don't know this, because insulin casts a pretty long shadow. We cover his career in the Second World War, where he was a leading scientist throughout allied war effort, which actually has a Carolina connection. Regression chambers and the Frank's flying suit, the G suit for fighter pilots. Banting was one of the leading coordinators for that, the Frank's flying suit actually comes out of the University of Toronto, we of course cover the discovery of insulin from start to finish with a couple of really interesting exhibitions there. And we're also keepers here of the flavorful...

Stacey Simms 13:23
We'll get back to Grant just a moment so he can explain all about that. But first, Diabetes Connections is brought to you by Gvoke HypoPen and our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or just some juice, but a very low blood sugar can be very frightening. Which is why I'm so glad there's a different option for emergency glucagon. It is Gvoke HypoPen, Gvoke HypoPen is pre-mixed and ready to go with no visible needle. 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/risk. Now back to Grant explaining one of the most popular and significant exhibits at Banting House.

Grant Maltman 14:20
Now the Flame of Hope was lit on July 7, 1989 by the Queen Mother. So the Queen of Englandy, our current Queen Elizabeth the 2nd's mom and this claim stays lit until a cure for diabetes is found. And the doctor or team of doctors, no matter where in the world they are, when that cure is found, they are to be brought to London to extinguish the claim and also open up a time capsule that the International Diabetes Federation has left here in our property. So it's a pretty all-encompassing story, not only on Banting's life but in the discovery of insulin, but also the legacy of hope for a cure.

Stacey Simms 14:53
Yeah, I'm curious when was that time capsule created?

Grant Maltman 14:57
The time capsule was created in 1991, as part of Banting's 100th birthday celebrations, it was created by the Youth Delegates for the International Diabetes Federation. So they met, the Congress that year was in Washington, DC. And all these delegates were asked to bring something to create this time capsule. And then as we understand it, the next, we have this time capsule created, where was it to be housed? And as we were told, the initial thought was, it would go back to Europe where the IDF headquarters were, but the Youth Delegates objected to that and said, "No, there's a flame burning for us in Canada. And when that flame is extinguished, that means we're free from this disease. So whoever frees us should be the ones to open it." And so that's how we ended up with it. And we're very honored to be the caretakers of that.

Stacey Simms 15:51
Another thing that I've seen just looking, you know, virtually at the museum, another thing I wanted to ask you about was the dear Dr. Banting. I don't want to call it an exhibit, but maybe it is. And that's something that people can do virtually still. Right?

Grant Maltman 16:04
That's correct. So this is an exhibit we created, gosh, just under 10 years ago now. And it turned into something we never expected at all. It set, it started off. It's in Dr. Banting's bedroom. And this is a very important room for people. We have people from around the world, what, 85 countries a year, everything from visiting scientists to people affected by diabetes and sort of general tourists. And the room's a very emotional room. Everybody wants to sneak a touch with Dr. Banting's bed and then you know, we tell them it's okay. And we get their pictures taken with it. And we were thinking about, it's about three quarters away through the tour and and we're just trying to capture some stats where people were from, what did they think of the tour? What do they think the museum, but to our surprise, the initial letters, weren't, you know, "Tour guide talk too long," or "I really liked the wallpaper." It's in, which is what I thought we would get, a sneaky guest book. But instead it turned into, "Dear Dr. Banting, thank you for giving me an opportunity to lead a fulfilling life to my family," or "Dear Dr. Banting, this is the site of the greatest moment for all children with Type One, my daughter diagnosed last week at age two deserves to live. Thank you for your gift. They're written in many languages, as I said, medical students and researchers talk about being inspired. We had, you know, as I say some of the world's leading physicians and diabetes specialists around the world talk about how being here makes them a better physician, researcher, and advocate for their patients and really speaks to the importance of place. And the letters are no different than the letters Banting received when he was alive and in the 20s and 30s. And we have a wonderful collection of those and, and we do feature them now on an online exhibit called Dear Dr. Banting on our website. But I think what's really interesting is this sense of community that these letters create, often we'll have people you know, I don't want to write a letter, but they'll go to read the ones that we have stacked. And of course we get too close and they all fall and all sudden everyone panics, "Oh, I've wrecked the exhibit." And as they pick them up, you can't help but read them more closely and realize, "Oh, this is what I want to say." And then they'll leave their own letter. You know, "Dear Dr. Banting, this is my 16th diaversary, I just want to let you know I'm alive and well." And in some sense, it's almost as if these people think or believe thqt Doctor Banting is going to see these letters, even though he's been gone for over eighty years. And the best example was a family visiting from the UK and I can't remember their last name. Well, let's just say it's Smith, but it was, you know, dear, along the lines of, "Dear Dr. Banting, just want to let you know, our daughter who's celebrating her 15th diaversary is doing well. Thank you for your gift to her and the world. Signed the Smiths of England." Of course, because they didn't want him to be confused with the Smiths of Nova Scotia. So as a public historian, this is one of the things I'm most proud of, that we've done here because it really gives us this sense of community, this sense of hope, and allows people to know that they're not alone and sometimes people with diabetes, there is that sense of you know, you're in this alone and when you see other individuals and other families saying, thinking, and feeling the same things that you are, it does make managing your diabetes a little bit better that day.

Stacey Simms 19:41
Grant, how did you come to work there? Tell us a little bit about you.

Grant Maltman 19:44
It's a funny story, actually. Um, so in London, Ontario, we actually have a Sir Frederick Banting secondary school, and I went to that and when the museum was first opening in the early 1980s, I was on the school student council and was, a history, you know, a history buff, future budding historian even then and so I convinced the student body that we should be supporting this museum in its inception. And then it was about 10 years later, I actually became the first paid employee of the place. So I sort of sowed the seeds at that point. And it was, for me personally, like every young person started out on a career, this is going to be you know, your three to five years and then move on to the national site, but the collection and the people that you get to meet and the stories and the opportunities that I've had here, you know, I've met governor-general, and foreign ambassadors and dignitaries who want to come and see this story and understand the story. It's been a very rewarding place. My cat had diabetes, was on two injections a day. So yeah, it was a black cat. And, and it was really, it was really interesting. We actually have an exhibit in the museum called the Faces of Diabetes. So it's, it's some famous Canadians and Americans with Type One. And we threw in, threw in a cat too, because, you know, people treat their cats, dogs, horses with insulin. So it, it can be a very powerful and emotional place. So throwing the cat in makes for, to lighten the mood a bit for people, but it's a wonderful place to be, wonderful collection, and it's just filled with stories.

Stacey Simms 21:22
What are you all doing this year, and you know, leading up to the anniversary, the 100 years of insulin?

Grant Maltman 21:27
Well, like everyone else in the world, we've been hit with COVID. So we, our 100th anniversary started last year, so in October, on October 31, with the 100th anniversary of the idea, like everybody else, we'd moved things online, so just virtual, social media posts, and what have you. We were able to have an event in November on World Diabetes Day, which also happens to be Dr. Banting's birthday. And so on that day, and we do this every year, we will read these, a selection of these "Dear Doctor Banting" letters, and we unveiled these commemorative bricks that people are purchasing from around the world that helps to support the museum. This year, we are working, as things are starting to reopen, we are working on an exhibit telling the life and story of one of Dr. Banting's patients, who's one of his first patients so we have his first insulin vial from 1922. His patient that I'm sure many of your listeners know in the United States, Ted Ryder, who's Banting's last surviving patient, went from six weeks to live in 1922 and died in 1993. So we're going to do an exhibition on his story. We've just, Canada Post just unveiled a commemorative stamp and first day cover to commemorate the 100th anniversary. So we've been actively involved with that. We have a Heritage Minutes coming out, Historic Canada produces these sort of little one minute vignettes on Canadian history. And on Monday, we will be unveiling that the discovery of insulin. So we're pretty excited about that. And then we're going to be continuing on through the next two years with different 100th anniversary celebrations. So we have in the works, an exhibit called Diabetes Ink (Ink), featuring diabetes related tattoos, which has been a really interesting project to work on. Initially, people you know, the first tattoos that I saw when visitors came through would be the medical alert bracelets, which were always incredible. And then the inspirationals, you know, the symbols, I'm greater than my highs and lows. But now we're seeing these tattoos from across North America and Europe, where you have Banting and Best busts on people's calves to Flame of Hope on shoulder to insulin molecules. Parents are, who would never thought in a million years they'd have a tattoo, are getting the Dexcom on their arm because their son or daughter has one. So show them in support for them to kiddos. So that's going to be an interesting one, we close out our 100th actually in 2023 to commemorate Banting being our first Nobel Prize winner and it'll be the 100th anniversary of that, so we have a lot of things in progress as things start to open up, but like everyone else, trying to put as much online as we can, so people can can come and experience the birthplace of insulin virtually.

Stacey Simms 24:29
Yeah, as my listeners are hearing this if they have a tattoo they want to show or a Dear Doctor Banting letter, is it all accessible online? Can they send you photos and things like that? Are you looking for more?

Grant Maltman 24:40
Yeah, they sure can. So the easiest way to send a photograph would be banting@diabetes.ca and that comes to me and just, "Tattoo exhibit" and just a little you know two sentence blurb about yourself. But our hope is to do an in-person exhibit and online and we've done some bios, broken it down thematically, so we're always looking for more, my ultimate goal is to actually have a tattoo artist in residence that summer for folks who want to do it. And of course, we'll have the temporary tattoos for the parents who don't want their eight year old getting a tattoo, which is completely understandable. And as the Dear Dr. Banting letters, if you visit our website and click on the Dear Dr. Banting exhibit, there is an opportunity to send us a letter there as well. And what we've been doing is printing them off. And so we have them here in the museum because people couldn't visit during the anniversary. And then they'll be put on display. And then we are working on getting them up online as well. So people can see them.

Stacey Simms 25:43
Grant, it's interesting talking to you, because you know, you are an historian, you take care of a museum. But this is not just any museum, right? We're not going there to see fossils and interesting art, just by talking about the letters. This is a museum about something that saved lives, changed lives, continues to save lives, when you come to work every day, are you thinking about that?

Grant Maltman 26:06
I do. And more I thought about it more this year than before. I think it's, to tell a national story, it's important work, there's two ways to look at it. And this is one of things that we, that we say in our tour to our visitors and the importance of place. We're celebrating the 100th anniversary of the discovery of insulin. 100 years later, we have better insulin, what we still don't have is anything better than insulin. And that's what makes this place so important. It's why people come here, you know, we hear the words, like pilgrimage, we have people refer to us as a "Diabetes Mecca." And it's not just from from individuals or parents of children with diabetes, but these are people, everybody knows someone with diabetes now. And so this site and this moment is as relevant today as it was 100 years ago. For me, I think this is a great story to tell that Banting is and the discovery insulin is well known, but Banting's not known well, and the story isn't known well, we have that opportunity to share this continuing story. It's not the most professional, but it's a really neat place to be when you have some of the world's leading scientists come here and thank you for having this place open. It's pretty humbling. But it also also speaks to its relevance. And I think it's a it's a real honor to do that. And I think what is also interesting, put this story in perspective, and this is this COVID world we're living in right now, the parallels 100 years ago, the race to find this vaccine for COVID, this race to find what they thought would be cured by at least this treatment, this discovery of insulin, the parallels are all there and to go from idea to Nobel Prize in three years, again sort of draws that that similarity with how quickly we came up with a vaccine today. There's a really neat quote, and Michael Bliss's book Banting: A Biography, which is 30 years old, but still sort of the gold standard out there. He writes, "Banting and Best were leading and won a race they didn't know they were in," because that many people you know, there were people around the world, looking for this treatment, this theory that Banting brought to the table wasn't entirely new, it was a different approach. But lots of people were working on this. And these four men: Banting, Best, Collip and McCloud were the right four men in the right place at the right time to take this from the beaker to the bedside, literally in record speed.

Stacey Simms 28:40
Hey, everybody, Stacey jumping in here. This is obviously where we were putting the cameras on. And as I mentioned, there is a video of this on YouTube, if you want to go over later and take a look, you will definitely get the full idea if you keep listening. And I hope you keep listening, because I have an idea of how we can contribute to the efforts of Banting House's 100 year anniversary celebration, so definitely stay tuned. But here is Grant taking us on the tour. Grant, before I let you go. Let's put our video on real quick. But as you listen, a lot of times when I do zoom interviews, we turn off the video because it's better for the audio, it's easier on the bandwidth. And also because I didn't put lipstick on today. But I didn't realize Grant was going to be in the bedroom, in Banting's room and I thought we cannot let this go. So I'm going to see if I can just make your room a little bit bigger. Let's see. There we go. I don't know if it'll record like that. But we'll give it a try. Can you give us a quick little tour of where you are? Would you mind? We might lose the audio a little bit but I think it'll be worth it.

Grant Maltman 29:38
Sure, okay, so well, over my shoulder is the 100th anniversary stamp. I am on a laptop. So I'll sort of disconnect this as this sort of, we've turned it into a bit of a makeshift studio. So as I tried to show, so there's the stamp that the first day cover, and let me just, I'll stand up and let everyone sort of get a picture of the room, it's behind me like a laptop selfie. So that's Dr. Banting's bed there. And so we've had scientists from around the world, come to sheepishly lean against it, because you're not supposed to touch anything in a museum. And so I'll say, well it's not the mattress it's the frame, and they'll grab the foot of the bed. And while it's difficult to see, the finish has been rubbed off, because they're all rubbing, I want to take a picture of it. I actually had one scientist lay down on the bed, and you know, which you might have crossed the line doing that, you know, we'll let you sit on it. But when he sits up, he says, "Now I've been here, maybe now I can finish this work. I've been doing diabetes research for more than 30 years." Of course, I'm tempted to say, "Well, you know, if you think a power nap is going to help, sure I'll turn off the light and close the door for you." But that really speaks to how important this place is and what it means to people. Couplequick stories. So I had a woman from England come through, senior citizen, cultural tourists. Our visitors will drop hints as to how they're affected by diabetes, you know, they either flat out say it or "I'm on the pump" or what have you. And she gets in the room. And she starts getting emotional, as emotional as an English woman would allow in public, you know, pretty stiff upper lip. And so I asked her why it's affecting her. And she says I've waited 20 years to come to Canada to see this house because someone had sent her the biography. And she says the controversy over the issue of credit and the discovery of insulin means nothing to my family, because Dr. Banting woke up in this room with this idea the day he did means insulin was discovered the day it was, which means that arrived in England the day it did, which meant my father who was at that hospital, that received for those early batches, was able to get his first shot, pregnant pause, which meant 15 years later, I was born. I got to meet the missing generation because you think of those in early 20s, insulin limited supply. And it's, it literally was pick and choose, you know, you've been on this diet for a few weeks, I don't really feel well, I'm not sure this child's waking up tomorrow. So we'll give them that shot. So for me, I mean, I've been telling that story for, you know, almost 30 years, I still get goosebumps doing it. But probably the most emotional was a young mom, maybe 30, first child, 10 months old is diagnosed with Type One, so youngest in southwestern Ontario, just being a new mom is overwhelming enough. And then gets hit with this. And this is pre-internet. So this is and this isn't the era where you know you diagnosed at breakfast you're home at supper. This is, you're in the hospital for about a week. As a parent, you're taking the classes, stacks and stacks of reading. Every intern, here's my first paper, you know, youngest in southwestern Ontario. And so she just needs to get out. So she comes to Diabetes Canada, what's the glucometer, what you know, what have you and like any parent is just, you want everything. And she wants to tour the museum too, which we offer and you know, some is gonna be retained. And some it's just trying to make sense of the world. And she comes to the bedroom, and she sits on the bed and just lets go, and that's okay. If you're crying, we get it. You're not the first person, you're not going to be the last, you take all the time you need, my office is just down the hall.. So about 10 minutes later, still here crying. So you do (indistinct). So you just bring a box of Kleenex, and come into the room and about a foot and a half, two feet inside the room and she just looks up at me, stands up, deep breath, instantly dries up. "No, thank you, I will never shed another tear on this. My child is going to live because what happened in this room all those years ago," push point...here, man, here's the keys you can lock up when you're ready to go. As I say 100 years later, we have better insulin, what we don't have anything better than insulin. And that's why this room is so important to so many people. And why for me, it makes this job so satisfying, because I get to meet these people for whom this story means the most to and as important and in effect on.

Stacey Simms 33:48
It is so much more than a museum, a typical museum. It's unbelievable. Well, Grant Maltman, thank you so much for spending so much time with me and for taking us into the room. I hope to see it someday in person.

Grant Maltman 34:00
My pleasure. Until you can get here, bantinghousenhs.ca, please pop in and drop us a note we'd love to hear from you.

Stacey Simms 34:08
You got it.

Announcer 34:14
You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms 34:20
More information about Banting House and everything he talked about. How about that tattoo exhibit? I mean so much here. That is all at Diabetes-connections.com. And I know some of you have already visited Banting House, I'd love to hear about those experiences. I'll put a little post up in Diabetes Connections the group and maybe we can talk about who's visited and who's been there and who sent their tattoo pictures and that sort of thing. All right, in just a moment. I want to talk to you about our own version of dear Dr. Banting. But first Diabetes Connections is brought to you by Dexcom. And let's talk for a second about Control-IQ, the Dexcom G6 Tandem pump software program. When it comes to Benny's numbers, you know I hardly expect perfection. I just want him happy and healthy. And I have to say, Control-IQ has exceeded my expectations. Benny is able to do less checking and bolusing and is spending more time in range. His A1C since we switched has been his lowest ever. This is in a teenager, the time when I was really prepared for him to be struggling and his sleep is better too. With basal adjustments possible every five minutes, the system is working hard to keep him in range. And that means we hear far fewer Dexcom alerts, which means everyone is sleeping better. I am so grateful for this, of course individual results may vary. To learn more, go to Diabetes-connections.com and click on the Dexcom logo.

Alright, here's where I need your help. While Grant was talking about the Dear Dr. Banting exhibit, I got an idea. And I want to know what you think. I will put this in the Facebook group as well. How about we do our own Diabetes Connections version of Dear Dr. Banting, would you be up for sending me audio versions of this in your own voice? In other words, you'd write a short letter, maybe you know, less than 30 seconds or a minute of audio where you say, Dear Dr. Banting, thank you, or this is why I'm so grateful. Or here's what I'd like you to know, or whatever you would write in a letter to put in the exhibit. I think it would be really interesting to have an audio version of this and I talked to Grant about it off the year, he's really up for anything. I'm not sure that he would put it in the museum. I mean, he didn't make any promises. But I do think that he was really interested in hearing more about it. And if we start now, I'd love to play this for the month of November. So let's mull it over. Help me out with it. Let me know what you think. But I'm gonna get started on this. There are many ways for me to capture your audio that are easy. I'm actually going to be traveling to conferences, which is so much fun to think about. Maybe I can get some audio there. But we've done this before where people record on their phones and send in to me, it's very easy stuff. So if you're up for it, let's do it.

Before I let you go, this weekend on Saturday, I'm at Camp Nejeda. Well, it's virtual, but I am going to be talking at their Survive and Thrive event for adults with Type one all about having your voice heard, getting the message out, advocating for yourself. I love doing presentations like this. So that is this Saturday, there's still time to register. I'll put a link in the show notes. And right now the next event on my calendar is Friends for Life in July. There is more to come. I'm hearing from some organizations that are starting to kind of tiptoe back into in-person events. If that's you, and you'd like me to come and speak, please let me know, I have some new presentations. I'm going to be kind of adding onto the website and talking about some things that I'm doing in addition to the World's Worst Diabetes Mom. I have some fun presentations. So let me know. And of course, if you're planning farther into 2021 or 22 now, oh my goodness, I'm working a little bit more in the podcasting field. And I may have an announcement about that before this episode airs. So watch me on social, but I've got some podcast events coming up too, one in Nashville and one in Arizona. So boy, it's amazing to think about traveling again. It's gonna feel weird the first couple times. But man, I am ready. I don't know about you, but I'm definitely ready.

Thank you as always to my editor John Bukenas from Audio Editing Solutions. Thank you so much for listening. In the News every Wednesday now at 4:30 live on Facebook, make sure to join me for that and then we turn it around for any podcast episodes later in the week. I'm starting to release those now on Friday. So watch for those here as well. I'm Stacey Simms. I'll see you back here in just a couple of days. Until then, be kind to yourself.

Benny 38:43
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged.

 

 

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