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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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Diabetes Connections with Stacey Simms Type 1 Diabetes
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Now displaying: March, 2021
Mar 30, 2021

 There are a lot of terrific small businesses creating products to help with diabetes management. We've seen families with 3-D printers making insulin vial cases, people who've come up with better ways to make your CGM stick to your body, and  creative clothing with places for pumps. What if you could search through those products in one place? That's the question Adam & Celeste Litt decided to answer when they started their online marketplace, The Useless Pancreas.

Adam was diagnosed with LADA a few years ago. He and Celeste share what that diagnosis was like (he was initially misdiagnosed with type 2), how they teach their two boys about dad's diabetes, and what they hope to accomplish with the Useless Pancreas.

In Tell Me Something Good lots of teens and young adults with new jobs and a bunch of sports milestones to brag about.

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 (rough transcription, has not yet been edited) 

Stacey Simms  0:00

Diabetes Connections is brought to you by Daria health manage your blood glucose levels increase your possibiLitties by g evoke hypo pin, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:28

This week, lots of people get a diabetes diagnosis themselves or in their family and they create a product or write a book or invent something to help others. Adam and Celeste Litt took a

 

Adam Littt  0:40

broader view. I just see all kinds of different really cool stuff out there. And I think that's part of the magic as well. Stacy is there's so many questions out there. What is the solution for this? How can I help this and you get shipped to all these different places and sites. It's not really in one place and people don't always really know where to go.

 

Stacey Simms  1:01

Adam was diagnosed with LADA a few years ago, he and Celeste join me to talk about their marketplace for T1D products and services called the useless pancreas.

In tell me something good. Lots of teens and young adults with new jobs and a bunch of sports milestones to brag about 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. Are we so glad to have you along. 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 to more than 14 years ago. My husband that's with type two diabetes. I don't have any kind of diabetes, but I have a background in broadcasting and that is how you get the podcast and Adam Litt who I'm talking to this week. We connected many, many years ago. Well it was a one way connection because Adam used to listen to me on the radio. And it was just funny to think about how you know things like that kind of come full circle. As I always say for the start of every show. You know I have a background in broadcasting here. I live in Charlotte, North Carolina. I worked in radio here for 10 years. I hosted a radio morning show Charlottes Morning News, the city's top rated morning news show,

basically, I got up in the middle of the night and got to work by four o'clock in the morning to go on at five for four hours a day trapped in a box with a couple other guys. And we had a great time. But I love that. But after 10 years of getting up at 233 o'clock in the morning, I definitely had had enough. But talking to Adam just reminded me about that connection that you have with your listeners when you do a job like that, you know, he commuted into Charlotte and listened every day. And my son Benny was born in 2004. And I was on the radio at that time. So my listeners went through all of that with me. And then they went through his diagnosis with me. So he knew the story. Well before the podcast, it just took me back because I was very lucky to have the career that I really always dreamed about having when I was a kid. I worked in radio first part time. And then I worked in television for more than 10 years as a local reporter and anchor then came that decade in Charlotte doing radio. And then you know, it's funny, I've really I've spent almost the last 10 years and I hadn't realized it, I left the radio station at the very end of 2012. And I did some freelance work. I worked as a multimedia journalist, it's really a one man band, you know, you're shooting your own stuff for about a year after that just for health insurance. But I've been on my own running my own business for a long time. And I hadn't realized how long until I talked to Adam and we figured out when he must have listened to me. I don't miss getting up in the middle of the night and I don't miss some of the nonsense of working at a radio station like the one I was at and that's another long story. I do feel extremely grateful to have been able to kind of create this radio job for myself and to be able to serve you and do this and have listeners all this time. We're coming up on six years this summer and every time I get a Litttle radio reminder like that I just want to take a moment be thankful so I really appreciate having you here

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

My guest this week saw a gap in the diabetes community and like many of us, they jumped into filling. Adam Littt was diagnosed with LADA A few years after being initially mis diagnosed with Type two if you're not familiar with LADA 80 is latent autoimmune diabetes in adults it's also called type 1.5 it presents a lot like type two but it's really type one it's just slower moving is a really good kind of basic definition of it and i link up more information we've done lots of episodes on LADA but i like to explain it you just you know you never know if this is somebody's first time hearing about it adam and his wife celeste have started a new website it's a marketplace for diabetes products called the useless pancreas and i will link that up as well in the episode homepage it is useless pancreas all one word full disclosure my book is listed as one of the products on that website but they don't pay me any extra to list it there and no money exchanged hands for this interview adam and celeste thank you so much for joining me it's great to talk to you today

 

Adam Littt  5:48

thanks so much for having us yes thank

 

Unknown Speaker  5:50

you

 

Stacey Simms  5:51

yeah this is gonna be fun i have so much to ask you about our charlotte connection and your website and the uselessness of everything that you're doing but let's start at the beginning here if we could adam tell me about your diagnosis

 

Adam Littt  6:06

sure yeah be happy to go into that stacy so i was a ladder diagnosis the you know late onset type and at first and probably probably very similar to a lot of people's stories out there i was diagnosed as a type two and this was around my mid 30s and you know what stacy after that they diagnosed me type two that was a Litttle pudgy and i said yeah i'm just gonna go ahead i'm going to lose weight i'm going to work out i'm gonna get really fit and when i lost weight when i started losing weight i started losing weight at a pretty rapid rates where people started making some comments like well you're you're getting reasonably thin probably a Litttle you know fitter than where you ought to be and i blew this off i completely disregarded it you know i had my a one c's checked for a couple of years and they were maintaining in the mid sixes and you know everything was fine and but i kept getting healthier and healthier as far as weight control and diet and everything else and it wouldn't budge and then i went off to las vegas with some friends we partied a Litttle bit out there and after that i came back i was feeling really bad the day after i came back as you can imagine from las vegas and it went down in my workplace they're sort of infirmary set up and they took my sugar because i was again a type two in their eyes and it's 250 and they said you know let's go ahead and check you out and they they look they found ketones like you're off to the hospital right now and then you know after that it was the typical story you know you go see the end oh you do the tests you get the diagnosis my a one c somehow went from six and a half to it was 10.5 i think for that three month period so it was some rapid acceleration maybe you know it was just time i guess so anyway and it just gave out and was it las vegas probably not

 

Unknown Speaker  8:03

well it was also partly your birthday cuz your birthday was my birthday yes

 

Unknown Speaker  8:07

that was my my diversity is that what they call them

 

Celeste Littt  8:10

diversity is the day after his birthday

 

Unknown Speaker  8:14

yes yes there you go

 

Stacey Simms  8:15

so what during this time kind of what were you thinking you know 30s is young for type two to begin with but it's not extraordinary i mean were you kind of thinking things were funky

 

Celeste Littt  8:26

you know looking back on it i i think we saw signs and didn't recognize them up until that point so it was a Litttle scary i mean here i am with two young boys and you know thinking oh my goodness now i have one more thing on my plate adam sometimes put refers to the diabetes as his third child

 

Stacey Simms  8:48

adam had you ever heard of LADA

 

Adam Littt  8:50

no i had no idea as a matter of fact when my doctor first throughout the term lot i said i don't know what you're talking about she said well it's type one and a half so what do you mean type one and a half so i started looking all this up and stacy you know during this period where they do all the blood work you know you just pop every night and you're looking what is lot and i'm like i hope it's not tied to my biggest fear at that time was again a type two i was pretty well control they'd never had prick myself at all to take my pleasure my biggest fear was oh my gosh are they going to come back and start telling me i have to test my blood sugar once or twice a day well different story now but yeah we went through all that

 

Stacey Simms  9:31

it is funny what your initial thoughts are when you get that diagnosis because we don't really have any idea right unless you're in it and so let's say i ask you because as you know in many families mom has a lot going on i'm sure adam is very responsible with his as he calls it his child that's their child there but i'm curious too when you heard he had a lot of what first went through your mind

 

Celeste Littt  9:53

oh wow like i said before i feel like i was overwhelmed it was a change in our lifestyle we actually had to take some time off to really figure out how to manage the type 1 diabetes and how to carry things around and how to deal with all the lows and the highs and there was this learning curve at the very beginning that was just very overwhelming for me especially trying to manage and make sure that he was okay he obviously wasn't on any Dexcom or any pump at this point he would test his blood sugar and it would be really low there were a couple of really scary moments at the very beginning where he had some 30s blood sugar levels and just thinking also just about having to raise these kids by myself there's always that thought in the back of your mind and and or am i gonna wake up and find you know that he didn't make it to the night i was constantly worried about him all night long and just during the day when he was away at work things like that

 

Stacey Simms  10:52

and did you know that

 

Adam Littt  10:53

did i know she was worried about me stacy well to that extent no i at all it's nice to to hear she's always been a wonderful caretaker and she carries around two Litters for me stacy wherever we go you can always see the concern obviously it did make me think stacey have you know when i was first diagnosed though i remember i was sitting downstairs with one of these lows that she was talking about and my older son who was still very young at the time she may be honey he was what like seven or eight at that time something like that he was looking down as i was experiencing this this low and shaking and trembling and not knowing what was going on i remember this this vividly and he didn't really know how to help me either and that was actually a reasonably scary moment it was all just brand new so glad we're you know we've learned since then

 

Stacey Simms  11:45

yeah are the kids kind of on board now i mean they're they're tweens i guess we could call them at this point do they kind of i'm sure they understand more and they they're you know they can help out if needed

 

Adam Littt  11:55

or though when we when we go out to the golf course they you know they pack smarties in the bag and stuff like that and you know if daddy ever has a severe low whatever it might be they'll go and run and get the two Litter they'll pour it for me and they'll stand by and make sure i'm alright so they're they're good kids

 

Celeste Littt  12:12

i feel like we've been proactive about that and we've tried to prepare them a lot for how to handle an emergency situation it's really important for me to continue getting them trained in first aid cpr and things like that on a regular basis so as they get older they're just they feel competent enough to deal with a such situation if it were to arise what's the two Litter the lemon lime soda

 

Unknown Speaker  12:37

hey it's probably sitting on my desk over there dc

 

Unknown Speaker  12:41

what does it like storebrand

 

Unknown Speaker  12:42

sprite is from lead oh yeah yeah it works it does a job it's quick

 

Stacey Simms  12:50

it's funny though because i really feel like i should mention before we go any further that while you and i don't know each other you have known kind of me since benny was diagnosed because and this feels really weird to say like you listen to me on the radio i mean i don't say that to weirdly brag or anything but it is funny how you have these connections with the diabetes community that when you are diagnosed or when your child is diagnosed it's so nice to kind of i know from my experience i knew people before benny was diagnosed is why i'm bringing it up and i was able to say oh my gosh i remember and i remember this kid evan that i had met several years prior and he was this nice normal funny kid i was like okay my kid's gonna be alright because i remember evan is all right and i'm curious do you listen to wb t and we didn't talk about benny all that much but you do remember him having diabetes

 

Adam Littt  13:37

i do and i remember i remember driving to the same company i still work for every morning and listening to you in the crew on wb t and i remember these sort of snippets and you would talk about benny and what i really heard come through i didn't fully understand even though we do have a connection to family stacey right i have a half brother that was diagnosed in 12 but you know he's you know he lives in new york and we talk whenever but i never flew him sandy but but hearing what at what i heard is i heard the amount of emotion that came through when you talked about it right and that's what i remember from those you know those discussions that you were having and things like that and you know also you know the the passion for what you were doing in the community so that that really did resonate and then you know so many years later i'm diagnosed i run across you again i'm like stacy and she's in the type one community and here it is i'm like i have to go ahead and shoot an email right now and that's that's what i did and now we get to do this really cool talk so

 

Celeste Littt  14:38

yeah we appreciate it

 

Stacey Simms  14:40

oh of course of course unless it's funny to think about that vinnie was so young you know i had him while i was working at wb t so it's really funny to think about when did you well i'll ask celeste i'll start with you here when did you all get the idea for the useless pancreas

 

Unknown Speaker  14:55

how did that come about

 

Stacey Simms  15:01

Back to Celeste answering my question in just a moment. 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 Dario 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 comm forward slash diabetes dash connections for more proven results and for information about the plan.

Now back to Celeste and how they got the idea for the useless pancreas.

 

Unknown Speaker  15:54

Well,

 

Celeste Littt  15:55

it was actually Adams idea. I was visiting some relatives in Florida, and I left him at home that that visit I brought the kids down, we visit the grandparents, I guess we've kind of talked about doing something for the type one community for some time, but we weren't quite sure where we fit in yet. And while I was gone in Florida, he was up here and it just kind of hit him. He was always on a lot of Facebook boards and things regarding diabetes to find the answers to his questions and to see what other people are going through. And a lot of times people always were wondering, well, where can I get this? And what is the solution for this issue that I'm having? And so he came up with that idea? Well, you know what, let's solve these problems. That's pretty much where we started from. And I don't know if you have anything to add to that.

 

Stacey Simms  16:46

Adam, was there like a item that you will have an aha moment where you thought, Oh, my God, I need to do this.

 

Adam Littt  16:51

Yeah, there was there actually was Stacey, it's interesting. So yes, less left, I had quiet time. And I guess this is what I do. In my quiet time, I just start thinking of things to keep myself busy. And so yeah, it was, you know, it's amazing, because the type one community, I always in, not in a negative way, Stacy, but I always feel it's just a massive population of just really good people just looking for solutions. But the community is underserved in various ways. And on some of these big boards, like the Dexcom boards, a lot of people would go out there and they would post, you know, whatever they were selling, whether it would be as a hobby as a business just to support their type one child, whatever it may be. And I think this one board had maybe 30,000 people on it massive, you know, creating

 

Unknown Speaker  17:35

a Facebook group,

 

Adam Littt  17:37

a Facebook group. Yep, I'm sorry. Yep. Yep. And, you know, the moderator said, No, look, I'm really sorry, but we can't have these solicitations or posts anymore. And somebody else posted up there, you know, that's fine. You know, you put a comment on his post saying, Well, look, you know, we started this Litttle other community. And, you know, you could go ahead and buy and sell on Facebook right here. And I went to that community as well, anyway, you know, and you saw people just trying to go ahead and solution and sell their goods, you saw people looking for them. And I said, you know, this is great, but there's got to be a better way that we can bring this community together and make the transactions easier. And that's how sort of the whole concept came to be Stacy.

 

Stacey Simms  18:15

So tell me what it is. This is like a flea market almost. For all the diabetes goods and services. Maybe flea market isn't the best word.

 

Adam Littt  18:23

No, it's it's okay. I mean, that's, that's actually exactly how we started. And we started. And so we started, you know, talking to some of these people on these boards, we said, you know, look, you, you if you want to take it a step further, you know, we'll handle the transactions for you and just go ahead and post it up. And people started started doing that. And we started getting a Litttle bit of traction, the first site we rolled out was really, really terrible. And eventually, it was terrible. It was awful. It really did look like a flea market actually is less right.

 

Celeste Littt  18:53

But if you think about it at a flea market has multiple vendors all trying to sell products. And so yeah, actually, flea market is not a bad term for what we have at the very beginning.

 

Stacey Simms  19:01

I like a good flea market. Maybe that's not the best term. We need a better phrase for it. marketplace. marketplace marketplace.

 

Adam Littt  19:09

Yes. I mean, even eBay, they call it fleabay. Right. You ever heard that term, but anyway. But yeah, it started out pretty awful, Stacy. And you know, as we started going, at least the design, the concept was always there. People loved it. And we had some really early adopters despite the design and the look and feel of the site. And we started talking to some of the larger companies and the larger companies said, you know, we're excited about the idea. We love the concept of bringing everything together in one place, almost like a you know, an Amazon and everything store for type one diabetics, which is really how we started to head but we don't, you know, want to, you know, we want you to just put up everything for us. We want you to sort of host it for us and take care of the business and we just want to be sort of a we want you to be a marketing outlet for us and that that's how we've trained And now states that we handle, we handle everything we handle the really small guys that are selling, you know, like these decorated vials or patches or they have these seat belt Oh, girths. Yes, stickers, a ton of people stickers on Etsy for their kids. And then you know, we move all the way up to the, to the bigger guys that have, you know, these really high end diabetic bags, accessories for supplies, you know, the the insulin cases, the, you know, cases for the various pumps, things like that. So, you know, the idea is, is to get everything under the sun, type 1 diabetes, so all of us all the community can go to one place and find sort of the solutions that they need.

 

Celeste Littt  20:41

The main goal, I think, is to have people be able to share their solutions with others in the type one community and provide a place to do that someplace, even if you don't have your own website, you can get your own storefront on our website. So you could start out with that, and then move on to a more, you know, larger company setup where we have a drop ship option. It's really for all not just for large companies.

 

Stacey Simms  21:03

And I'm I won't ask you to play favorites, and everything on the website is fabulous. But have you found anything that you're using? I mean, I'm not I'm not seeing any gLitttery stickers on you.

 

Adam Littt  21:16

I'm really simple guy, right? So I don't use much in the way of anything, I actually just I keep the basics. Although I you know, I will say I really tend to favor some of the patches out there because you know, I have constant like everybody does with the I wear Omni pod, the word Dexcom. That does tend to peel away. And some of the, you know, some of the CGM patches and the Omni pod patches are really great solutions when you've tried everything else like skin tack and stuff like that. Yeah, those those patches seem to really help beyond that, as Celeste mentioned, I want to say Stacy, the creativity of some of these people on 3d printers, engineers making cases, as less said somebody came up with a design to prevent compression modes where you, you know, put basically a almost like a case around your Dexcom. And you sleep with that. And that seems to help. We've got people out there, we just on boarded a new business the other day that that actually, if the adhesives, if the patches don't work well for you, he's actually got a Litttle Litttle belt to go around and secured or if you're really active. So that seems to help as well. So you just see all kinds of different really cool stuff out there. And I think that's part of the magic as well, Stacy, is there's so many questions out there. What is the solution for this? How can I help this and you get shipped to all these different places, and cites it's not really in one place, and people don't always really know where to go. And now we can present all these options to the type one world,

 

Celeste Littt  22:51

I wanted to just throw something in there as well. We are worldwide, we have a global type one community. And a lot of times when I'm looking at products, I'm finding different products over in Europe and in Australia and some other countries that I have not seen here in the US yet. And if people aren't searching for something in particular, they are never, they never know what's out there to be able to solve their problem,

 

Stacey Simms  23:16

you'll ship like if I see something I live in Australia,

 

Celeste Littt  23:18

well, the cool thing is, is we actually don't carry any inventory, we're only dropshippers. So the companies choose where they will offer their products to where they will ship them to. And a lot of companies will ship to the US or we'll ship to Australia, Europe, UK is very big on our on our community as well. So the more countries that they're able to ship to that the more obviously the more sales they'll get, and the more they'll be able to share their products with other people who can use them around the world. And I want to say as well, Stacy, it's clearly listed on on each of the listings, where where the shipping is, but we will always go ahead and reach out for somebody, if somebody asks us if, you know if they can ship to that particular country, we'll certainly go ahead and contact the vendor and ask them, you know, we want to try to do what we can where we can for both parties. And to be clear, this is a business for you all.

 

Stacey Simms  24:08

So you are making money on this. We are

 

Celeste Littt  24:11

okay. Very Litttle. But

 

Unknown Speaker  24:15

that's the amount of work we're making less 510 cents an hour. Oh,

 

Celeste Littt  24:19

my goodness, not even not even but it's okay. Right. But I

 

Stacey Simms  24:23

just wanted to be clear that the way it's set up is that you know, the you are going to make money on the transactions and that kind of thing.

 

Adam Littt  24:31

We are Yeah, we're a mission driven organization in the sense that we want to serve the type one community but admit it's a for profit business for sure. I mean, as with any startup, Stacey, I mean, most of that gets most of it all of it gets dumped right back into getting the word out advertising listing, you know, and basically soliciting right back out to the community.

 

Stacey Simms  24:50

Yeah, well, you've heard the podcast I have sponsors, I have no issue with ethically making money, as long as everybody's upfront and clear, as you all are.

 

Adam Littt  24:59

So yeah. As part of the community aspects of all of this, Stacey is we want, as you know, you just asked, you know, we're making money. Of course, there's markups between, you know, what we, you know, what it sold for, you know, what we pay, and we're trying to give a lot of that right back to the community. So we started an affiliate program where if affiliates want to go ahead and sell for us, they can easily sign up on the website, and they'll get a piece of whatever is sold out there. So, you know, that's one of many ways that we're trying to get the word out and keep the money in the community. And maybe, you know, one of the things to mention as well here, Stacy, is we don't want to limits the marketplace in any way to products. We're already talking with diabetic coaches out there. We talked with somebody just the other day that does lessons, or rather gets together kids groups,

 

Celeste Littt  25:56

right social groups for diabetic children.

 

Adam Littt  26:00

Yeah, and we've already talked with people that work with type one, diabetic groups for travel as well, you know, after the whole COVID thing is over, we like to get into all of these things. So you know, people can come to one side and say, you know, hey, I could travel, I could send my kids who grew up or maybe I need nutrition counseling or fitness coaching. And I could buy a set of CGM patches at the same time if I need those.

 

Stacey Simms  26:22

And Adam, how are you doing? You mentioned you're using an Omnipod, you've got a Dexcom. So it sounds like you're, you've come quite a long way from worrying about checking your blood sugar once or twice a day.

 

Adam Littt  26:32

Well, I've got a handy two Litter there, right, just in case No, I, I don't know. I was born with a very obsessive personaLitty, Stacy. So

 

Celeste Littt  26:40

I have to admit he does do well. That's nice to hear.

 

Adam Littt  26:43

I tend to keep pretty good control. I want to say that part of my retirement for my workplace is probably going to have to be annuitized turned into lifetime income Stacy, I intend to live till 150 just to get all of my money right out of that workplace.

 

Stacey Simms  26:58

Very nice.

 

Adam Littt  26:59

You got it to God, it's so I tend to do okay, I'm pretty regimented. I know you know what I eat and what it does to my blood sugar is I live pretty boring lifestyle as far as food, I put my energy into business and and the kids who run me relatively ragged. Thanks for asking. Sure.

 

Celeste Littt  27:17

I actually I have to say he, he has simplified my life because he does eat almost the same meals for breakfast. And for dinner. And lunch is our main meal with his protein at lunch. So I can't complain so much. He actually does keep things very simple. For me.

 

Stacey Simms  27:34

That's the difference of having perhaps a husband with type one and a son. As we were saying, for the interview started, I'm not exactly sure what my son is eating what hour of the day, especially with virtual school. Chinese who to two o'clock in the morning.

 

Unknown Speaker  27:48

That sounds like our tweets, actually. Yeah. That's what they went through last night.

 

Stacey Simms  27:53

Adam and Celeste, thank you so much for joining me, it's great to talk to you and learn more about this. I'll link everything up so that people can learn more and start snooping around the website and maybe contacting you if they have products. We have some very creative people in the audience as well. But thanks for sharing your stories.

 

Celeste Littt  28:08

Thank you so much for having us.

 

Adam Littt  28:10

Thanks so much for your time today. We really appreciate it.

 

Unknown Speaker  28:18

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  28:24

Lots more information. As always, at the episode homepage, just go to Diabetes, Connections COMM And I like to say every so often, if you are looking for a previous show, or a topic that we covered, if you go to the website, I have a search box on the upper right hand side, it's a really robust search, we have 365 episodes. There's a lot of stuff out there. If you'd like to hear something, many of the newer episodes have transcripts, not the older ones yet we're working on that. But it's just a really easy way to go through what I hope is a good source of information and sort of what I kind of call it a snapshot of the history of the diabetes community for the past five, almost six years. I'm certainly not exhaustive, but really good snapshot of what's been going on in our community since 2015. So definitely check that out at the homepage. Tell me something good is coming up. We have a teen and young adult edition this week.

But first Diabetes Connections is brought to you by Dexcom. And I just want to take a moment to talk about control IQ. This is 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. I have to say control IQ the software from Dexcom and Tandem has exceeded my expectations. Then he is able to do less checking and bolusing and spending more time in range. His last three A1Cs were his lowest ever they keep going down. This isn't a teenager, the time when I was really prepared for him to be struggling. His sleep is better to with basil adjustments possible every five minutes, the system is working hard to keep them in range. And that means we hear far fewer Dexcom alerts, which means everybody's sleeping better. I'm so grateful for this. Of course individual results may vary. To learn more, just go to Diabetes, Connections comm and click on the Dexcom logo.

 

I went looking for good news stories in a Facebook group that is frequented by parents of teens and young adults. And I've got some really fun stories to share with you. Catherine says Noah is my type one spectrummy 16 year old he had his best report card since third grade three A's and a B plus. He's on new meds new therapist, a new school also doing remote school. So it's quick with reduced social anxiety, fewer distractions and no papers to lose. He actually likes school this way. I gotta say, I know this year has been very difficult, but remote school has been a boon for many kids. I don't know what we're going to do when things go back. It's not for me to say but it would be really nice to figure out a compromise here for some kids like this that it's really working well for. Tammy says my son Cole is a sophomore in college. He was diagnosed at age three and a half. He's now 20 he serves he rock climbs he traveled to Cabo. He's MDI and uses a Dexcom he ran on club teams. He was a varsity runner in track and cross country. Tracy posted about her daughter Sophie, who was diagnosed at age nine. All she posted first was a really cute picture of her daughter saying she finally got her job at Starbucks. So I had to say, Is there more to this story? I do not get it. So Tracy wrote back and said she is a junior in high school and enjoyed bagging groceries at Publix. But her main parents made her quit due to the pandemic. She has attended virtual school since last year. But missed working. She discovered Starbucks was safer, because they only have a few people working there at a time and it's mostly drive thru. It took weeks of email and calling and follow up work to make it happen. She just turned 17 on Sunday. So that's the story. And then Jessica writes in my 17 year old Trenton played in all three games at their state basketball tournament. He's their ninth guy, he even scored a basket. And she posted a really cute picture of Trenton with his parents, I'm going to grab these photos with permission and put them into the Facebook group because they're really fun, especially this one, I have two more good news stories for you. They're very different from one another. But this one is from Alex. And she writes, I was born and raised in Oregon. But I've lived in Argentina since the 90s. Our daughter was diagnosed a Litttle over two years ago. And I learned that in Argentina, they have a diabetes law that guarantees access to insulin strips and all necessary technology for diabetes care as a human right. This love is achieved by a group of moms in 2013. While there are gaps in the system, there is a framework within which you claim access to what you need at a public hospital. The psychological relief she writes, this law provides brings me no end of comfort. And I love that it was achieved by a group of moms. This is the photo of when Congress approved the law. And this is a great photo of moms cheering and hugging and crying. And there's one gentleman in the photo as well. I will put that in the group. What a great story. I mean, wherever you come down on the side of access and insulin for all I know there are different poLittical views. That's fine. You've got to really believe that the psychological stress of trying to afford this stuff is heavy on many, many, if not most people's minds. And I will leave you with a really fun one. And I don't know if she knows that this is kind of an anniversary. So here's the story. Leslie, who I have known for years, you may have heard me tell the story about when Benny was very Litttle another Litttle boy was diagnosed right at the end of Gosh, I'm getting old now was at first or second grade, I want to say was the end of first grade. And Michael and Benny talked it over and everybody felt better about it. But Michael and Benny had also played baseball together and Leslie posted a photo of Michael Vinny no longer plays baseball. He played lacrosse and then he's into then football and now he's he's really into wrestling. But Michael stayed with it and it's done really well. And she posted a photo of Michael as an umpire. He is working as an umpire and the picture is partial gear. This kid you can't even see him. He's like buried in the equipment here. And she says he really enjoyed it. calling home plate is more fun than the basis I have a new appreciation for the discomfort ups must be at games after the many layers required to put on and I said it was an anniversary of sorts because it was this week. It's last week as you're listening. But this week when Leslie sent me the photo that Michael and Benny and another Litttle boy Parker, all played in a baseball game together two teams. This was our Litttle town baseball league for elementary school. So a couple of towns I guess, but two teams and three boys with type 1 diabetes on the same game, and it showed up in my Facebook memories, which is how I know so let's Thanks for sending that in. Thank you all for these great good news stories. This is always my favorite part of the show, send him in, you can email me Stacey at Diabetes, Connections, comm or post them in the Facebook group.

 

Before I let you go big thank you to jdrf Desert West, which includes chapters in Arizona, New Mexico and Nevada. I participated in their type one talk last week, and I really appreciate you have me out to talk with the world's worst diabetes Mom, I am looking forward to an event with my local chapter, which I don't even know how big my local chapter is anymore. Maybe it's North Carolina, South Carolina and Virginia, I think. But at the end of April, well, April 23, I will be hosting trivia, I'm very excited about this, we're gonna have a big online zoom, but play along trivia. And if you'd like to do something like that, I am more than happy to host it for your chapter, your diabetes group. If you've ever seen my silly game shows or listen to my game shows that I put out here it's not dry trivia. We're not quizzing people, we're not going to do math problems on bolusing. It's lots of fun diabetes news. But you know, in a, I'll give myself credit in a comedic, It's lots of fun diabetes news, but in a fun, interesting, family friendly kind of way. So I would love to do that get in touch. Let me know if that's something you're interested in. You can play over zoom. Everybody needs a separate app on their phone. It's a Kahoot app that lots and lots of schools use. So your child probably already has that and can set you up if you don't have it yourself. Alright, lots of stuff coming up classic episode in a couple of days and we are back to our interview shows on Tuesdays. So please join me then. Thanks as always to my editor john Kenneth from audio editing solutions. thank you as always for listening. I'm Stacey Simms. I'll see you back here soon until then, be kind to yourself.

 

Benny  36:51

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

Mar 25, 2021

We can't wait to enjoy live theater again! That made us think about some of performers we've spoke to over the years. Maddy Trumble performed as Mary Poppins during that national tour and has also played Elphaba in Wicked. She was in the original Broadway production of Newsies, and many more plays and musicals.

Maddy was diagnosed with type one as a kid, and always knew that she wanted to be a performer. Maddy gets real about the cost of this type of career - she's had trouble with health insurance as its tied to constantly getting performing jobs. And we catch up to her to find out what her life has been like since this original interview and during the pandemic.

This interview first aired in November in 2016.

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

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Episode transcription (rough transcript, beta version) 

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by inside the breakthrough. A new history of science podcast full of Did you know stuff?

 

Announcer  0:14

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:20

Welcome to a classic episode of the show. As always, we aim to educate and inspire about diabetes by sharing stories of connections with a focus on people who use insulin. Our classic episodes are a look back at some of the people's stories and research we were talking about at the very beginning of Diabetes Connections back in 2015, and 2016. We have a lot of new listeners since then, chances are you haven't gone through all 360 plus episodes. So I like bringing these to you with an update on what's going on.

So I first spoke to today's guest, Maddy Trumbull back in 2016. And I had forgotten why I went looking for a Broadway play person in the first place back then. Well, it turns out, we had just seen Newsies, the Broadway touring company, here in Charlotte, and Benny and Leah, my daughter, we were all talking about how athletic a show that is, if you haven't seen it, and there's, you know, the original movie, certainly, but they made a movie out of the Broadway show. And that is really, really worth watching. It is not only singing and dancing, there's a tremendous amount of gymnastics. I mean, the choreography is, it's incredible, and it's exhausting. It's nonstop action. So Benny said to me right after the performance, he said, I wonder how you would do a show like that with type 1 diabetes? You know, he didn't say like, could you do it? His question was more like, how do you do that? How do you manage it? Which as the mom, I really liked that question. So I thought, there's got to be somebody we could talk to about that. Right? people with type one are doing everything. So I put out some feelers and we found Maddie Trumbull. She was actually in Newsies. And there's lots more to her story. And I'll give that to you in just a moment. But first, this episode of Diabetes Connections is supported by inside the breakthrough, a new history of science podcast that explores the idea of a eureka moment. its historical wisdom, mixed with modern insight, sort of a mash up between a history show and a science show. And it's funny, and it's entertaining. It's really well done. The latest episode takes a look at who takes part in psychological studies, you're the studies that are looking at human behavior that's supposed to be universal, but it turns out most of them only studying a particular group of people. That turns out to be anything but universal. It's a great episode full of surprises. I love this show. Search for inside the breakthrough anywhere you listen to podcasts, you can find it wherever you found this one. This podcast, as you know, is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. Did you see the national tour of Mary Poppins or maybe wicked? Or maybe Newsies on Broadway? Then you have seen my guest Maddy Trumbull actually played Mary Poppins in that national tour. She has also played Elphaba, the Wicked Witch of the West before she was the Wicked Witch of the West that said wicked under all of that green makeup if you've seen that show. And as I mentioned, she's been in Newsies on Broadway as well. She was diagnosed with type one as a kid, she always knew she was gonna sing and dance and be a performer. I was really excited to talk to Maddie about you know how she does all of that and travels. Again. This interview was taped in 2016. And of course, the last year has been difficult for everybody. But when you think about live theater, it's just not happening. And Maddie I reached out to her and got an update. She says she lost her insurance when Broadway shut down. And she did she was very honest, it wiped out her savings she was paying for Cobra. So she said I wasn't willing to give up her pump and her Dexcom. We actually talked about that at the time about how difficult it was to get insurance when you're not performing steadily. So it was already difficult back in 2016. And it's gotten much more difficult in the past year. She does say I'm okay for now. I'm living in Chicago with my boyfriend working at a bakery waiting for my industry to reopen. And Maddie, I will ping you when things go back to performing and stage shows are happening again. Let's catch up. And boy would I love to come see you. So here is my interview with Maddie. And I'm calling her Madeline at the beginning for some reason. But here is our interview from five years ago. Natalie Trumbull, thank you so much for joining me today. I'm excited to talk to you.

 

Maddy Trumble  4:40

Oh, thanks for having me, Stacy.

 

Stacey Simms  4:42

I have so many questions about performing and what it's like. But let me back up to more of the beginning of your story. Because you grew up with type one when were you diagnosed? Yeah,

 

Maddy Trumble  4:54

I actually was diagnosed

 

technically on the first day of kindergarten. So

 

My dog shot had just been diagnosed. I don't know how I can't really remember I was four. My dog had been diagnosed with diabetes that summer. My mom has a PhD in child psychology. So she This is before the internet, they had all these, you know, medical journals. And you had done lots of research on diabetes bushi knew, you know, the symptoms, like going to the bathroom lot and being really thirsty. And I remember, we went to a friend's birthday party at it was like in a park and the bathroom was like up a really long walk up a really steep hill. And I just remember I went to the bathroom. And of course, like two hours, like six or seven times, I remember walking up that hill. And I remember that was when my mom was like, I think Celine may be up so when I went to the doctor to kind of get all your shots and tests for when you start school. And I was like, Can you just throw in a type 1 diabetes test and so confusing. I found out on the first day of kindergarten. And luckily my blood sugar was not so high that I actually didn't have to be hospitalized. I think it's pretty, as I've heard, it's pretty unusual. But that was the first 15 minutes for that. I just celebrated 22 years. Wow, man. I mean, diabetes. Yeah. 22 years. I'm,

 

Stacey Simms  6:27

what was your dog's name? That was fast. They went by fast.

 

Maddy Trumble  6:30

Oh, the document was shosh it's um, it's, it's, it's some other language for there. I can't remember. My mom is a fuzzy, hippie. hippie. We're from Berkeley, California. Yeah. shosh. So what was it that

 

Stacey Simms  6:48

was it funny to have a dog with diabetes and a kid with dijet confuse your friends at all?

 

Maddy Trumble  6:54

No. Well, we used to, like, you know, we used to do our shots together. And I would give shosh her shot. And then I get my shot. It was kind of cute. We were bosom buddies. Yeah. I can

 

Stacey Simms  7:07

imagine from your perspective, that was pretty helpful in a way. I mean, you had a buddy.

 

Maddy Trumble  7:11

Yeah, definitely. I'm like, yeah. I mean, it's so hard to remember. But I do remember giving our shots. And then I think I was I was giving myself my own shots. And I like after a couple of weeks. You know, I know that takes a lot of kids a long time. And I think that made it a little easier. But I had, you know, I've been given my dog her shot for a little while. And so yeah, it was like, I think it made the transition a little easier. in a weird way. But that's fun. Yeah, I don't think about that often. And my dog having diabetes, I completely forgot. Yeah.

 

Unknown Speaker  7:51

What kind of dog? What was shosh?

 

Maddy Trumble  7:54

Oh, gosh, she's a big month. She was big and like really big and had long black hair? Not quite sure.

 

Stacey Simms  8:01

Um, well, for is very young to be diagnosed. I mean, I understand that you don't have a lot of, you know, memories other than going up and down that Yeah. Do you remember growing up with type one? It's hard to ask again at that age, if it changed anything for you. But did you accept it pretty well? Do you? Did your friends do okay with it?

 

Maddy Trumble  8:23

Yeah, I yeah. It's tough to remember. I think I did. I never saw it. I remember that when I was diagnosed, I was the first time I remember at least seeing my parents cry. And I remember thinking that was weird because I didn't know what the big deal was because I was just like my dog. But I and I, like I said, I started giving myself my own shots for right away anyway, I don't think I ever saw it kind of as a as a disability or something I had to deal with. I think I kind of saw it as more of something that made me special. And like every summer starting that when I was five that you know, the next year, we went to diabetes camp, we went to a family camp for a few years. And so that was always like, not a good thing. But it you know, brought opportunities and I met lots of friends that I wouldn't have met if I didn't have it. Yeah, and I don't really remember from being kids the bad times, which is good. You know, that kind of came later. Like when I became a teenager and started having some denial that disease would never go away, which is really, I still have a hard time dealing with that. But when I was a kid, it was like what am I doing on shots and my friends thought it was cool and all my friends wanted to learn how to work and then when I got a pump in middle school, my friends all wanted to learn how to give my money Insulet in case I know in case I ever needed them in an emergency. There's always a kind of an opportunity for i don't know if i You know, as a negative in my life, that kind of came later, I totally understand that my

 

Stacey Simms  10:06

son was diagnosed very young at age two, and we're just getting now to the point where he's, he's in middle school. And he's kind of like, you know, used to be diabetes. And I love my friends from camp and, you know, I just yeah, natural for a teenager to be excited about it would be a little different, in a way.

 

Maddy Trumble  10:25

Yeah, it's definitely like, if it gets old, you're like, Oh, this isn't going away.

 

Stacey Simms  10:31

So when did you know you wanted to? When did you know you were interested in theater? Is that something that you always remember? Or did something happen when you were a kid to flip that switch?

 

Maddy Trumble  10:42

No, that was always my dad was an actor. He My dad is my dad is deaf. And so he kind of became an actor, kind of by accident. He was not never went to school for it. But back in the 80s, when Children of a Lesser God was on Broadway they needed there's one. There's one character in the show who is deaf, but needs to have very good speech. And my dad speaks really well. It's really good speech for a deaf person. And anyway, so they, I can't remember the exact story. But somehow he fell into this Broadway show. And he lived in New York for a while and, and he was like a lover of musical theater, and so was my mom. So we just like always had it growing up. I remember my first one. I mean, I was obsessed with the Wizard of Oz, and all the old movie musicals. I was little. And I don't think it never was like a decision was made. And then my mom, I'm from the Bay Area from Berkeley. And there's a ton of great community theater there. And so my brother and I, just one day, my mom was like what we should you should go audition for Annie Get Your Gun, which, you know, has kids in it. And we went an audition and I think singing in the rain with the I had an umbrella as a prop. Yeah, and my brother and I, we both were. Both were cast in the show. And kind of that's sort of what changed it. I was seven, and he was not. And we both really fell in love. And then my little sister too, eventually started doing it. And she's still acting out. She's on the sound of music tour. Going around America right now. So yeah, I was always in a family is there? We all did it. We all did shows together. made it easier for my mom, she has like one place to dry. That's cool.

 

Stacey Simms  12:35

So you have three have a brother and sister.

 

Maddy Trumble  12:38

Yeah, there's the three of us. Yeah.

 

Stacey Simms  12:40

I have a very ignorant question. But you said your father loves musical theater. It's hard for me to understand how someone who's deaf can have that sort of appreciation. Can you can you try to explain some of that to

 

Maddy Trumble  12:52

me more? Yeah, I remember him talking about. I mean, he's an actor and he and to us musical theater is so much about the music, but if you've watched he like loves Jim Kelly and Fred Astaire, and he loves finding crowds, Barbra Streisand, because she's such a fantastic actor, and she, her hands, her fingers and her fingernails. I don't know if anyone loves Barbra Streisand as much as I do. But she is the longest fingers and uses her hands in a really interesting way. And so my dad, it's all visual for him. You know, he can't hear the music. But you know, engine Kelly is so fun to watch. You could watch him without music, and it would still be entertaining. I think it's like the visuals in musical theater. And he was an actor. So we talked about what to do with your hands and how hands are really important, obviously, for him to that's how he talks. But yeah, so is the visuals in musical theater. I think more for him. And this style of acting, I suppose also, because it's can be a bit more exaggerated and lots of which is something that would speak to him, I suppose. I've never asked him about that. But he was really into Gene Kelly singing in the rain was like another one of my favorites. Oh,

 

Stacey Simms  14:12

I've seen that movie a million times my sister and I, we had we had in the olden days, we taped it off of PBS one time with our VCR. And we went over and over again. And when I see it now I wait for the pause, because there was a pledge drive when we taped it. And so in the 40 minutes or so they were interrupted for 20 minutes. So I know where those pauses come at is such a

 

Maddy Trumble  14:41

fun drive. Oh, yeah. Yeah.

 

Stacey Simms  14:43

So. So tell me a little bit about performing though, with type 1 diabetes as a as a teenager as a kid. I mean, I imagine you had to do a few things to help yourself out. Can you talk about that?

 

Maddy Trumble  14:55

Yeah, I'm not really. I'm trying to think of A story from when I was a kid, I'm not really remembering. The only thing I remember, I just, I got a pump in the summer before sixth grade, which is when I played anime and anime. And I remember having to do that and having it show through my costume. And that was honestly that for me as a kid again, I've been you know, no big deal. That was the biggest deal. I remember thinking. So you know, when you are, when you're performing, you usually have to wear a microphone as well. So it's like you have one extra machine on you. Anyway, so that's what I remember. I'm trying to think of something that happens maybe that I,

 

Stacey Simms  15:48

that's okay. I'm just curious. Did your parents like when you're performing? Do they want you to check your blood sugar before? Did you have snacks backstage?

 

Maddy Trumble  15:56

Or do yeah, that kind of thing? Yeah. Yeah, it's tough one. Because when I, I've been lucky enough to get to play a lot of these in shows and who don't really leave the stage. I'm just thinking, like, when I played Mary Poppins. I also have no problem I kind of really rely on you have a dresser who kind of needs you backstage? Every time you're off stage to give you water and and you know, if you need to change your costume or fix your makeup, they're kind of there. But you're never really offstage for more than no 20 seconds. Wow. So I'd always Yeah, so I've been you know, they always had glucose tabs or juice. And I would always, and when I was a kid, too, I'd put, I'd have like a little box on either side of the stage and in my dressing room. And yeah, cuz it's really, I mean, it's scary to be low, no matter what. But it's really scary to be low. And you're in the middle of the show and doing a dance number. And I've never had any major. Anything. I've never been so well. But there's been a couple times where it just gets it gets a little scary. And you can't leave the stage Really? Yeah, I remember one time Mary Poppins we were doing steppin time, which is this huge, like 12 minute long tap numbers. And I was starting to feel low, and then it kind of really hit me in the middle of that ever, which is a really, really bad time. And then you don't leave the stage again for another 10 minutes. And I've never, I've always a thought every time I do a show like I'm going to have there's going to be a point where I leave the stage or I'm going to have to stop and it's just going to have to be okay. Because it's just gonna have to be okay, because that's the most important thing is not the show is my health. But I've been lucky I haven't had to, do you

 

Stacey Simms  17:47

ever think about keeping, like glucose tabs in your costume? Because, you know, I know Mary Poppins can't be eating in the middle step in time, but you could like sneak it. Yeah, something like that.

 

Maddy Trumble  17:58

No, I never did. That's a good. There was always something. I guess if I if I'm in if I'm ever in a show where I can't leave the page for a long time I will 100% have to have something But Mary Poppins was that that one scene was strange when I was low, because I was on stage for like 20 minutes straight. Usually there's, I could run off stage as I needed to. And there's always someone nearby. And you know, I always tell everyone on the first day stage management just so they know. And everyone's always very understanding. I'm always so curious about it. And I should come to rehearsals with like a brochure. It's on the literature. But I just tell them and they're usually Yeah, I've not had any crazy, crazy thing I've had to deal with yet.

 

Stacey Simms  18:52

Do you have a blood shock? Yeah. Do you have a blood sugar goal? And you certainly don't need to share specific numbers with us that you'd like to be in or range that you'd like to be in when you are performing at the beginning of the show?

 

Maddy Trumble  19:05

Sure. Yeah, definitely. I, I mean, normal for me is like a little higher a thing than most people's. I like using one and 150 and right before the podcast. I was 137. So I'm patting myself on the back. But definitely the before show, because the adrenaline and everything. It's so easy and just running around and I just did last year I did a vivo which is and I played Eva Peron, which is the lead and like she really, I mean, I left the stage a lot. But every time I was backstage, I was changing my costume and my wig. And so it was just really there was never a moment to sit down. Never a moment test my blood. So I'd like to start ideally, like around I feel like around 200 because my buzzer is not going to go up when I'm doing a show. So I'm going to go down. So that will be the ideal. Do you

 

Unknown Speaker  20:07

always have? Yeah.

 

Stacey Simms  20:08

Do you wear an insulin pump during the show? Still? You kind of mentioned that earlier. Just curious to do do you keep it on under your costume?

 

Maddy Trumble  20:18

Yeah, I do. I'm trying to think if I, I think I took it off for a veto, because that one was so short, the first act of like, the first and second act are both about an hour. And there were so many costume changes. And so it's so much running around. I think I did take it off of that one. We have Mary Poppins also, I think it would be different with costumers are so fantastic and can figure out where to place it. But with Mary Poppins I wore, there was no way anyone was going to see the Mary Poppins I had two microphones, because it gives you one, you use one, but then you have a backup in case the first one dies or goes dead because there's isn't time to change your microphones. So I have two microphones and my insulin pump, but no one saw because I had these huge dresses and a buffalo so they kind of I usually put them like in the like on the small my back. So no one's gonna see them because, but I'm trying to think if there's ever had a costume where I was worried about it being seen, I don't think so. I've been lucky to be very close in all my shows.

 

Unknown Speaker  21:24

Okay, yeah.

 

Unknown Speaker  21:25

What kind of pump do you use?

 

Maddy Trumble  21:26

I have a mini med. I've had a mini med forever. A mini med paradigm. It's purple. It's very pretty.

 

Stacey Simms  21:39

Do you use a continuous glucose monitor with it?

 

Maddy Trumble  21:42

You know, I don't know. But I have a girlfriend in New York, who I actually met in Chelsea Market. I don't know if you went there when you were there. So it's really cool to just like walk through market. There's the IMF. And we were in the bathroom until the market and this girl was like really beautiful red hair, and exact. And she had like a really cool outfit on. And she had the purple tongue, like, on the outside of her pants, which I thought was really cool. And because I never wear like you can never see my pump. It's always somewhere hidden. And she was just wearing it on her jeans or their cool outfit. And I just said I was like, Oh, I like your pump. I have the same one. And first of all, for me to start a conversation with anybody on the streets in New York is really unusual. But I'm so glad I did. Because she was like, I just moved to New York. And I you know, I'm just wondering, like, Can I get your phone number and maybe we can hook up for lunch. And it turned out that we had a lot of friends in common because she's also in theater. And anyway, she's like, become my girlfriend. What was I saying? Oh, I just hung out with her the other day. And she just got a Dexcom. And she has a an Apple Watch. And she was just showing me she was like, Look, I'm just looking at my watch. And it tells me what my blood sugar is. So I do not have a continuous glucose monitor. And my mom has been trying to convince me for years to get one. But I just always been weird about having a second machine attached to me. But it's so clear. My friend Claire was showing me it's so small and I don't know, I'm gonna have to really think about it because it seems like kind of a really cool thing.

 

Stacey Simms  23:18

Well, we've used our since for three years now. So if you would like to know the opinion of someone who's No, he was nine when he started. So he can you know, I do I think that the there there are. had to say this. I really Okay, so first thing is I'm the parent, right? I'm not the person with diabetes, right? So I of course love it, because it helps me take care of him in a way that finger sticks, you know, didn't give me the window that I wanted. But my perspective is not his you know, he likes it because he doesn't finger stick as much. And everybody uses it differently. And it's not labeled to not do finger sticks yet. But um, but that's really why if you ask him, that's what he likes it and it gets this mother off his back because I can just see his numbers. I don't have to ask him what's going on.

 

Maddy Trumble  24:11

Can you see that on your phone? Yes. Or Oh, wow, that's crazy.

 

Stacey Simms  24:15

Yeah, so he was right with the current Dexcom. He can have it on his cell phone or receiver. And that I can see it on my cell phone. And he is the one who wears the watch. He has a Pebble watch, which is a little less expensive than the Apple Watch. And he wears a watch so he can see it and it's more discreet for him in school. He doesn't want to pull out his cell phone. because nobody's allowed to have a cell phone at school. So he keeps his cell phone his backpack and then you can just look at his watch. But for us the best thing about the Dexcom is seeing trends, you know, because he's overnight his number, bananas because of puberty and everything else. And it That to me is the number one advantage is you really get a window. Yeah, you know, and I've already done a commercial for Dexcom in this podcast. So that's another one

 

Maddy Trumble  25:01

Yeah, I think it's something I definitely need to look into it. I have an appointment next week with my endocrinologist and Dave and Dave also want me to get I have a new one this year, but a new endocrinologist, he's been trying to convince me, I mean, it seems like a pretty cool thing. thing. I was just so hesitant, because what's also hard, I've had diabetes for so long. And I've kind of been doing the same thing the whole time. And the thought of having something else come in and kind of interrupt What I know is scary. But, but also at the same time I've seen technology grow. Because in the last 20 years, that's, that's when I first started my first meter was 45, it might have been 60 seconds. I mean, 60 seconds, and like a huge drop of blood, and then 45, and then 30, and then 15. And now five, and you know, then I got the pump. And it's certain point and so, but for the last 15 years or so I've been I've been doing the same thing. So that's what scares me. But I really should welcome it. And it's exciting. And sometimes I don't always feel when I'm getting high. And I'll test and I'll be shocked. So I think that would be a good thing to have, because it was kind of right, you know, yeah, I have alerts for you as well. We love it. But

 

Stacey Simms  26:19

at the same time, I totally understand what you're saying. I mean, you're you know, I have a lot of friends, who it's funny when you when you have somebody in your family who's diagnosed suddenly everybody comes out of the woodwork and you realize that you knew people. And I have a friend who Yeah, he tested one of the first pumps when he was in middle school. And it was a painful process. I mean, this is 30 years ago. So he it turned them off for pumps forever. And then he's got a pump in his 40s. He didn't want he just didn't want to do what he was doing fine control and he loves it. But you know, if he didn't, he will go back to what he was doing before. So you don't. Here's mom's advice. You

 

Unknown Speaker  26:52

do what's right for you. You know,

 

Stacey Simms  26:54

go check it out. Don't feel pressured. But yeah, cool. Is it that you made a friend? It's always funny when you see people with a pump or checking. Because you know, sometimes you don't want to be weird. But it's so cool that you are able to say something nice, great.

 

Maddy Trumble  27:09

Yeah. I feel like I see them all the time on the subway. And I never, I never Yeah, never want to say anything. But some reason she we looked like we were taught from the same cloth. So I yeah, I'm glad I said hi. And maybe I will again next time I see the Father.

 

Stacey Simms  27:27

So how did you get to New York? I mean, I know it's a long process. But as you mentioned, you're from you're from Berkeley. Yeah. And you were performing as a kid. But you know, a lot of people try to make it in theater. What was the I mean, not the whole process of

 

Unknown Speaker  27:42

how did you do it?

 

Maddy Trumble  27:45

Yeah, I grew up doing theater and my mom is so incredibly supportive. It's I I don't know how she and she loves theater. And it was never a question of, should I do this or anyway, so I found out I think we were in New York City. When I was in high school, we were seeing some shows. And I started noticing that people and their buyers and playbills were listing where they went to school. And I think I didn't even really know that you could use a major even got a BFA in musical theater, and I didn't know that that you could even do that. I think I kind of figured you had to go to NYU for acting or, you know, I didn't know any better. And so I was seeing BIOS, and I was seeing all these people. So many people have the University of Michigan in their bio. So I went up to a couple people after the show that season door and chatted with them about an actor's are so nice. And you know, they talk to you about the schools they went to. And so I looked into Michigan, they had a summer program for rising seniors. So the summer before my senior year, I did a three week musical theater intensive with the head of the University of Michigan Department of musical theater. So I did that. And then I love the school. I love the faculty and I audition, and I think three of us on this on our program got into the school. So I went to the University of Michigan for musical theater, and I did that for four years. And that was a tough four years. Because I've never, I had never really had any sort of training or I took voice lessons here and there and some acting classes, you know, maybe every other year, but I never I just did shows because it was fun. I just, I liked to be in plays and to all of a sudden be in a university setting where I was being graded on my acting and my singing and dancing was so strange to me. So I kind of had a hard adjustment and you know, it's an incredibly competitive environment. You know, there's there were 19 people in my class. Here's a group of like, 100 kids and everyone wants To be on Broadway and everybody wants to get the part in the show. And yeah, it was definitely a hard it was a hard. Four years. I think that that's what made me grow so much. And anyway, so I did four years at university. And then I did we did a senior showcase, which a lot of musical theater programs do, they put together like a 45 minute show, and everyone gets a couple minutes to kind of show themselves and what they do best. So some people in my class dance. Some people did like, you know, a little song and dance on people. I did I just sit there and saying, because that's what I do. And a bunch of industry people come agents and casting directors. And so from that I got an agent. Most people find was an agent, but then also from that, which doesn't always happen, but I got an audition for Mary Poppins, the casting director of Mary Poppins came to the showcase. And he actually called it up like pretty much all the girls from my class, went in an audition, and I had an audition and it went fine. But then I went away for the summer. And I never heard anything, never heard anything. And then I got a call all of a sudden, I was doing a show in St. Louis, during summer stuff, and they said Hi, can you come in for a callback or Mary Poppins? It's this day, so I had to take time off from St. Louis and go to this audition, and I got, I got the cell, like, right away. They called me when I was walking out of my audition. And they said, it was Thursday. And they said, Can you start rehearsal when Monday, so So I started on Monday. So that'll happen. It's so incredibly fast. And that was I did a tour twice. I toured with Mary Poppins two times. So this is the first time I did it. I got so I don't know if it was luck or timing or something. But so I did that tour for six months. And then we closed and then I moved to New York City. So I moved to New York City kind of in a great spot. I had all these friends in the industry. And I've gotten to save up some money. And I lived with a girl that I had toured with. And I was really lucky to have a lot of people moved to New York City, they go for their senior showcase. And then they're just there and they have the like my little sister did that she went and she did her showcase. And she got an agent, and then she had to find a restaurant job and and somehow come up with rent money because living in New York is so expensive. And I was incredibly lucky that my Find New York journey kind of started off. And it also started off a little late. And it was cool that I got to go to New York and I had a show on my resume. So auditioning was a little easier. And yeah, I definitely was a very long winded story.

 

Stacey Simms  32:44

No, that was great. That was great. And, but but and then after you move to New York, you understudied and we're in a few other plays. Right? You were in Newsies. And you were in wicked.

 

Maddy Trumble  32:54

Yeah, well, so I'm trying to think. So I moved to New York, and kind of right away, I think I've been there for six months. And then I got Newsies really quickly. And I did that for a few months. And then I did Mary Poppins again. And then I taught again, and then I came back to New York. And then I did wicked, and I actually did the tour of wicked. And then I tore it again with wicked, and then I came back. So I've been in and out of New York, since I got here. People asked me how long I've been in New York, and I feel like I'm lying to them. When I say five years. It's really not. It's really an often that long. The Yeah, so everything just kind of happened really fast. When I got really lucky, kind of right away. And then this, these last two years, I worked the I left wicked about two years ago, these last few years have been pretty slow, which has been tough to to deal with, because I had so much success so fast. And this is kind of right now I'm experiencing what most young actors experience in New York, kind of like, I go to audition pretty much every week, and they go well, and there's always some reason you don't get it really stupid. Like the last one, I was too tall. For one before that I was too young, which is good. At least I wasn't too old. You know, I've never had to do with talent, and I'm still getting used to the rejection is tough. I'm getting better at realizing that it's really not about me, it's not personal.

 

Unknown Speaker  34:27

But let me ask you that.

 

Maddy Trumble  34:29

No, I was gonna say it's tough. When you're in New York with 1000s of other fantastic actresses. You can be as specific as you want, you know, you don't have to sort of make any sort of concessions. The casting directors are like, I want that person to have shorter hair, so that then they can find that person. So, you know, it's really tough, and there's so many talented people, so I'm just really lucky that I'm in a spot where I know I have girlfriends and boyfriends who aren't even. They don't even they aren't even getting the audition. They want, you know, they're like, a whole step further behind me in a way, you know, because I'm the least, I haven't been getting the audition. That's like, that's step one. And that's really tough to even get the audition. Because if you think about, there's 1000s of people, and you know, hundreds of agents submitting their clients for one audition, so they can only see 10 people. So the fact that I even get to audition is like a great feat. So I'm at least thankful for that. But I was like a job that

 

Stacey Simms  35:29

well, and that leads me to what I was going to ask, which is, yeah, as a parent of a child with type one, I'm listening to this. And I'm thinking, how is she paying for her supplies? And I'm trying to do the math, are you and I, this is a super nosy questions, I don't have to answer him. Are you? Are you on your parent's insurance? Like how do you do this?

 

Maddy Trumble  35:49

Okay, so I was on my parent's insurance. But then I turned 26. Right. So that was last year. So then all of a sudden, so I get my health insurance, we have fantastic health insurance, that we get it through the union through the actors equity Association, and the insurance they give us is so great. It's incredibly affordable. And the diabetes supplies are actually like, we have a really great deal with them. And I don't really pay anything for my insulin or my strips, which is kind of agnostic. And anyway, but you get I get up to my union. So you have to, they give you insurance, based on the amount of weeks you worked in a year. So this year, I have literally worked five weeks, and you need 11 weeks to get six months of insurance, or 19 weeks to get a year. So I am losing my insurance January 1, which is super scary. And it just kind of adds a whole other element. So when I go into these auditions, I have to stop doing this. But I keep thinking like the stakes are so high for me for so many reasons. Because I'd love a job. I'd love money. But also I really just need to work so I can keep my insurance, my fantastic insurance. So thank goodness for Obamacare and not being able to refuse people because of you know, pre existing conditions, because I don't know what I would do if that was the case. But yeah, scary. So January 1, but I don't know what I'm going to do. I'll have to figure something out. But yeah, I know, it's been incredibly affordable the last few years, which is great. And then I think January 1 that will change. Super disappointing. Yeah, I yeah, it's that's kind of always been like me, you know, I watched the week's take away this last year, I would watch them go and every audition I'd go to I'd be like, okay, it starts the state and then finishes the state. So if I get it, I'd have enough weeks to Yeah, but um, yeah, no, I, I lost it this year. So that's kind of been tough. And that more than anything else has made you kind of reevaluate if this is the right thing to do, because I shouldn't I don't know, shouldn't it shouldn't be about that. When I'm auditioning and singing and acting. It shouldn't be about getting health insurance. But that's kind of what it's been about for the last year. And it's just Yeah, kind of stressful. And

 

Stacey Simms  38:15

it's such a common, unfortunately, such a common thought among people with any chronic condition. And I hear all the time in the doors community, that people are staying in jobs, they don't want, you know, where they're, they're working for money that they need to only go to insurance. And yeah, that's that is tough stuff. Yeah, let's talk a little bit. I don't want to completely change the subject here. But okay, and this is another nosy question. So since you're just you haven't, you've done a lot of additions this year, but haven't had study theater work. Did you? Did you take another job? Did you take a waitressing job? That's kind of stuff.

 

Maddy Trumble  38:49

Yeah, so I don't think I've been super smart about it. I have a lot of money saved up from touring. Because when you tour you get a per diem. And your paycheck, you kind of just get the pocket your paycheck, which is pretty fantastic. So I have like a lot of savings from three years of touring. So I've kind of been living off of that. And it's tricky, because every time I have an audition, and have a callback, and then have a second and third callback, which happens all the time, I'm like, Oh, I'm gonna get it. So I keep putting off getting a real like high paying sort of side job. But yes, I have. I do like I have a little teeny tiny part time job at soulcycle, which is fitting studio, which I loved so much. But I'm kind of in the process of thinking about what else I should do. I used to take headshots, which I take pictures for actors, which is kind of a great thing to do on the side for money and I haven't done that in a couple years because I don't know I just have not sure why. But I'm thinking about doing that kind of just to make some extra money now to pay for my health insurance. And I luckily have not had to waitress yet. I think I would be pretty terrible at it. I'm going to avoid that it's kind of the best. That's the best way to make money. I mean, my sister was doing that before she left on tour and was putting saving money in the bank. But she's working really hard. And I would I just I don't I would not want to be a server in New York, I think it would be a tough job. New Yorkers are tough. And especially when they're eating, they want things to be perfect. Standards are really high. I'm not sure I'd be good at that. That's funny. And I've been little side jobs. Like I do little temp things, and I babysit sometimes. And but yes, I've had to kind of pick up some stuff to make some extra money. Because, yeah, see,

 

Stacey Simms  40:51

I heard from a few people, I put it on on. I put on Facebook that I was talking with you. And you've actually answered most questions that people had, which were about, you know, performing with Lowe's and, you know, hiding glucose and things like that, and would pump you Yeah, but I think a lot of the kids look at this and think, Wow, what a glamorous career. And I really want to do that. And listen, if you are you interested in theater, you are passionate about it. But I hate to say I'm glad to hear you talking about that. Because it's not a side of the working actor that we hear a lot about.

 

Maddy Trumble  41:22

No, that's not and it's not something I ever thought about. or even in college, you know, they say we'd have people come in and chat, but the people who would come in so they'd have masterclasses and, and lab with, you know, alumni, but all the ones who came in are the ones who are working consistently and live really glamorous lives and who make a lot of money. No one ever came in and said, sometimes you don't make money. And sometimes it's stressful. And sometimes you lose your health insurance. And sometimes you really get, you know, when you're going on. I mean, I haven't gotten and I pretty much had an audition every week, and gotten called back for a year. And now I haven't gotten anything for over a year. So that is hard. Just the rejection is really tough. Because I'm pretty good at laughing about it. It takes usually takes a day, I usually have to go to bed, I get really sad. And then I go to bed and I wake up the next morning. I'm like, okay, I can do this. Yeah, it's tough though. When you it's constant. It's constant nose. And that's tough. And I go back and forth between blaming myself because surely not my fault. But it's hard when you know you. And when you see all your friends kind of succeeding. And, you know, which is it? I hate that I hate comparing myself to them and feeling like I'm competing with other people. Because you're really I mean, you are, but you're not. And so it's tough. It's really tough. But that one is good. It's so good. So, yeah. David think that's Yeah, that's Yeah, got to be so normal and so awful in those groups when people are working and people aren't working. It's gonna be crazy. Yeah. Yeah. And it's funny, because we're all at a different place. Like I said, You know, I have girlfriends who like they would kill to be having the audition, but I have, but then one of my best friends, you know, just turned down at a Broadway show, because, you know, he's kind of at a different level than me. And he decided that wasn't really what he wants to be doing. And, you know, so that's his heartbreak is that he, you know, they wouldn't give him enough money to do the show he wanted to do. So, you know, I have a hard time sympathizing with that, but also have to realize that everyone's in a different days. Sorry, my alarm just went off. Anyway, so I just, you know, everyone is dealing with their own. Yeah, you know, and I have another friend who I just auditioned for him last week, he's, you know, supervising a show I want to do, or that I was auditioning for, and I didn't get it. And I, you know, texted him and I said, I'm sad. I didn't get it. And I don't really know what to do anymore. And, you know, I can't catch a break. And he goes, Yeah, I'm not Angelou, I understand. I'm with you. I can't even get the auditions I want. And in my head, I like but I just, I audition for you. And but he's still, you know, he wants to be auditioning for other new Broadway shows, and he can't get those auditions and blah, blah, blah. So anyway, everyone's got their own heartbreak, you know, kind of no matter what level you're at, but then when it good and when I get to be playing my dream roles and getting paid to, you know, do like sing these, this music, music I want to say like when I got to play when I got to do a veto, which is like my dream role. And it's like, fantastic. And when I get to be recovered and people are so impressed with me because I'm in liquid, you know, then it's great, but then so that makes it worth it. I suppose but I'm kind of right now I'm kind of trying to decide. Just how worth it it is. Yeah. It's just tough.

 

Stacey Simms  45:09

Yeah, you're at a crossroads. That's really wild.

 

Unknown Speaker  45:11

Yeah, definitely. Yeah.

 

Stacey Simms  45:13

Well, am I interested to keep talking to you over the next couple years? Who knows what will happen? So this time of year, I was trying to think, and I'll edit this part out, but I will I may end up running this during right before Thanksgiving. So that'll either set up or take at this next question. So for many people, yeah, for many people, their their yearly or their biggest exposure to theater, is that Macy's Day Parade where Broadway performers, you know, walk down the street in New York, it's amazing. And they're every show has a musical number. And I DVR this every year and fast forward through nonsense and just watch the musical numbers. Have you ever heard up is that I mean, that's gonna be freezing and hard work, and You're up early. But everybody's always smiling. And it looks like a lot of fun. What's

 

Maddy Trumble  46:06

that? Oh, no, I have not done that. Because I have not been lucky enough to be in a show that's happening during that time. But But I you know, it's such a little teeny tiny world we live in. So I'm friends with like, everyone who does those shows, and everyone puts her does the parade. Yeah, I heard it's pretty freezing. And they all look, they all look so happy. But I think it is kind of like, that's a cool thing to do. When you're like, oh my god on a day to day parade. I that's kind of what this business when you get to work in it. It's kind of constant. Things like I I watched other people do this, and I was a kid. Like, and so that's pretty cool. You're like, oh, neither am I like Julian coming through. Yeah, yeah. So yeah, I think that's kind of what people are, like, out here. It's cold. Like, I used to sit at home, you know, every day, every morning. And, and like, I remember back in Mary Poppins, I got to play San Francisco. And I was like, I used to come and like, watch people. Like, I used to come and watch people on stage. And like, now little kids are watching me. Like, that's pretty cool. And like that's why that's like why you do it? I mean, you we do it because we love it so much not because it's easier not to have you get paid well, or it's like we'd love it so much. And I have always loved it. And like I think all of us if we could do anything else, I if I could do anything else, I would do it. But I don't really want to. So yeah, I'm still here. When you're

 

Stacey Simms  47:37

talking about performing for those kids, and you weren't one of those kids, once you know, watching the show in San Francisco, I know that you've met some kids after the show who have type 1 diabetes, more and probably elsewhere, what's that like for you?

 

Maddy Trumble  47:54

Well, first of all, they're also going to be better at taking care of themselves. And I am, I'm so impressed with all of them. They're super inspirational, because I what and it's cool because like I it is I never realized that I'm talking about it today that I didn't used to. It's not used to get me down, even before when it was harder to take care of it. Like in the 90s when it took 45 seconds for my, my, my resolve to come out. But I didn't used to like let it get me down. And these kids don't either. It's just something cool about them. It's something different and something they get to talk about and something that their friends don't have that makes them special. So it's always like, I think with anything when you meet kids who are like you are it's the same with performing like when I you know, every once in a while when I get to teach classes or kids who are actors, like they just took a song and they want it I don't do it because like, they want to make money or they want to win an award. They just do because they love it. And I think it's cool to like meet kids who, like remind you of you and remind you that like Yeah. Yeah, and it's but it's, it's cool, because I remember my role models. There was this like girl group called the punk girls, oh my gosh, I wonder what happened to them. They had like a CV and they all had diabetes. And, you know, I'm trying to think I didn't have any role models with diabetes. I didn't have anyone to look up to did what I did, who had diabetes, you know, like if they'll if they did it, and it was no problem for them. So that's kind of cool. I don't know that I fancy myself a role model, but I hope I can be. You are definitely Yeah.

 

Stacey Simms  49:37

I have. I have a I have a Facebook question for you. So Trish writes on Facebook, my high school theater major loves her meeting you Maddie and she wants to know if you have an education program for rising stars. I mean is there is there no, you went to college for this, but there is

 

Maddy Trumble  50:00

Do you mean at a college level?

 

Stacey Simms  50:01

I would think either a college level a summer program, you know, something that you recommend to kids get on the track.

 

Maddy Trumble  50:08

Oh, gosh. There's so many musical theater apartments now, so many more than one. I feel like there's new ones popping up all the time. I University mission was great. It's the faculty is kind of all changed now. And I'm not quite sure exactly how the department's being run. Oh, my gosh, there's so many I would say. And there's so many that we think we need to go to like, I thought I needed to go to Michigan. And obviously, I went there for a reason. But the I know people who go to smaller schools and who love them, and people who go to big universities and love them, I think it's about like doing all the research. Also, it's probably so easy. Now with that there's probably so many resources on the internet. I'd say do the research and visit if you can and see which works best for you kind of think it's like training programs like it's like classes. I have a friend who has a business who, oh, gosh, this is terrible that I can't remember it. I'll post it on the Facebook groups. He has a business where he takes him and he takes other like, Broadway folks with him and Broadway stars. And they'll go and travel to schools and high schools. And I know there's a couple organizations that do this. And they'll teach classes, and they'll perform for you guys. I did it one time, I went to a little teeny tiny, tiny town in Texas. They were doing Mary Poppins and I taught a master class. I think it's called straight out of New York, this is the worst answer ever. You're gonna have to add up just send it to me too. I haven't taken a class and so long, I probably should maybe it would be better my ambitions if I took a class. But yeah, you know, I wouldn't even know where to tell someone where to start. Gosh, I will think about that. And I will get back to that person on the Facebook page. That would be great.

 

Stacey Simms  52:05

How funny. There was also a question about, you must have a pretty crazy schedule, even when you're just auditioning, you know, you don't have a regular nine to five. So the question of how do you manage diabetes? Do you have a routine or a special diet or you know, anything that helps you out?

 

Maddy Trumble  52:22

The short answer is no. Which I'm constantly trying to be better and trying to. To find that routine. But yeah, it's tricky because every day is different. Some days I so I work at a gym, essentially. And we asked exam classes with somebody that has to be there at 530 in the morning. But then other days I like today I slept in and tomorrow I'll sleep in. And then the next day, I wake up at four in the morning. And so everyday is so different. Yeah, it's tricky. And I kind of I just test a lot, which is why I should get the Dexcom I test a lot and I try to keep up with everything. Yeah, there's it's tough when there's no routine. And as far as diet goes, I try my hardest to kind of I'm also vegetarian, which doesn't really have any effect on diabetes, but but I feel like I maybe eat more carbs than the average person because I joined me. So I'm I try to I'm pretty good at counting carbs. I will say got that going for me. I do a lot a lot of carb counting a lot of like, bolus wizarding on my pump to take out my guesswork, because my guess is pretty bad. But yeah, it's a constant, constant. struggle. I still get surprised by highs more often than I'd like. I'm not low often, which is good, I guess. Yeah, I always have larb always has me always have fruit with me too. In case I need it and but yeah, no, I there's a lot of growth to be done. And yeah. I'm glad to see my other eyes on the doctors equity because I guess they need their help.

 

Stacey Simms  54:13

Well, listen, I always think it's interesting when I talk to people like you because I kind of hear you almost like apologizing that you're not like a perfect role model. It's so funny. But you know, that's what this life is all about. I mean, there are people who are absolutely amazing. And you know, they have it they seem to have it down. But I like talking to people, too, who are very realistic and understand. I mean, this is not a game of perfect

 

Maddy Trumble  54:39

Yeah, no, it's not and I think goodness, but I ya know, I apologize all the time, but I always feel guilty about it, which I need to get over that part about it because it's hard for everyone. Even my girlfriend with a Dexcom the other day she was like, I was like 300 the other day and I don't know why that made me feel better about it. But I was She's super high and she has a desktop. So yeah, if and I had a girlfriend actually, who did wicked with me who also was a diabetic, which was fine. I never worked with him before. She didn't have a problem. She had a Dexcom. And she was had such unbelievable control. She's the most like, regimented, disciplined person I've ever met. And so for her a high would be like, if she was like, in the 200. She'd be like, Oh, my God, you know, that would be a big deal for her. She really made me feel like I felt like I was constantly apologizing to her. She made me feel like the worst diabetic. Not intentionally, I did that myself. But he was really great at taking care of herself. And she ate like paleo, and she counted every car and every gram of protein and calorie and pretty incredible to watch her take care of herself. She was really good at it. Definitely an inspiration. Yeah. I will never ever be like that, even if I tried my hardest just because I don't have that personality. But it was something to aspire to. Yeah, interesting. Well,

 

Stacey Simms  56:06

it doesn't sound like you're doing half bad. I mean, I know you're not working as much as you'd like to. But it's been fantastic talking to you and learning about this life. That's very cool. So keep us posted. I might see I didn't even ask you for theater tickets or anything. I was very good.

 

Maddy Trumble  56:23

I wish I can give you some I want some to

 

Stacey Simms  56:27

Oh, I know what I forgot to say. So I just wanna let you know. Yeah. So the reason I wanted to talk to you was over the summer, Newsies came through Charlotte, and where we live. And so we all went to see it. And my son who has type one, we were watching it. And if you haven't seen it before, it's a very intensive dance show. I mean, the choreography is amazing. It's dance and gymnastics. And it's incredible. And he said to me, I wonder how somebody with type 1 diabetes would perform in a show like that? Not could they but can just how would they do it? And so that's when I went on the search to try to find somebody who'd fit on Broadway. And so how fun to find you. And you'd been in doozies. And you guys had like a kind of a mini reunion of some of the cast members right in to do like a one night performance in New York.

 

Maddy Trumble  57:12

Yeah, we just did a little like reunion concert with him last year. I think we're gonna think it's gonna be an annual thing. Yeah, some of the original, not just original, any movies? Yeah, we got together and we sing some songs that I sang with. Cara, who I did the show with. And then we did wicked together too. So we sang the song from wicked, which is kind of fun. Because it's so rare that you get to work with someone twice in this business. So yeah, it was super fun and fun to get to see all our friends again and sing songs from the show. Yeah, that's great. And we're gonna do that next year, probably sometime in the summer. So yeah. All right.

 

Stacey Simms  57:53

Very cool. Well, thank you so much for joining me. It was great to talk with you. Yeah,

 

Maddy Trumble  57:58

thanks. Thank you so much. Great.

 

Announcer  58:05

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  58:11

I will link up lots of videos you can see Maddie perform, and that'll be at Diabetes. connections.com. On the episode homepage, I really, really miss shows. I mean, obviously, I'm

 

Unknown Speaker  58:22

not a performer. I

 

Stacey Simms  58:23

was a wannabe performer when I was a kid. You know, I wanted to be an actress. That changed once I realized how much talent you did need to. But I love Love, love musicals and shows and I almost this year, I seriously considered starting a second podcast all about Broadway shows. And I may still do that someday. I mean, who knows? Never say never. But we'll see. I just I miss it so much. I can't wait to go back and see people performing. There's nothing like live theater. All right. Thank you, as always to my editor john Buchanan from audio editing solutions. Thank you so much for listening our regular episodes every Tuesday, classic episodes every Thursday. So we'll see you back here in just a couple of days. Until then, be kind to yourself.

 

Unknown Speaker  59:12

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

 

Mar 23, 2021

The very first treatment to prevent type 1 diabetes for any length of time is in front of the FDA right now. Teplizumab has been show to prevent the onset of type 1 diabetes in people shown to be at high risk of developing it. Stacey talks to Dr. Henry Anhalt of Provention, the company behind the filing. Dr. Anhalt is a pediatric endocrinologist and has a lot to say about what this would mean to his patients.

Listen to our previous episodes on Teplizumab

In Innovations, a round table on insulin pricing with Congresswoman Katie Porter. It didn't have her famous white board, but participants pulled no punches.

Watch the full panel here: 

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

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

Join the Diabetes Connections Facebook Group!

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Episode Transcription: 

Stacey Simms  0:00

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

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, the first treatment to prevent type 1 diabetes for any length of time is in front of the FDA right now. We're going to talk about the clinical stuff. But there's a lot of emotion wrapped up in this development as well.

 

Dr. Henry Anhalt  0:40

I was trained to make people who have type 1 diabetes feel that they're never doing a good enough job, that they're at risk of developing all these complications. And you know, when you get to the point in your career, you realize that not only did that not help hurt, and then really being in a position to hopefully be able to make a fundamental difference and how that goes down. It's really hard to articulate, I have to say,

 

Stacey Simms  1:05

That's Dr. Henry Anhalt of Provention, the company behind Teplizumab. He's also a pediatric endocrinologist, we'll talk about Teplizumab what is in front of the FDA and why this treatment is so promising.

In innovations. A round table on insulin pricing with Congresswoman Katey Porter didn't have a whiteboard as She's famous for, but pulled no punches. You're gonna want to hear this.

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. I am always so glad to have you here. As you know, we aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, my son, Benny was diagnosed with type one right before he turned two, back in 2006. 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.

We are coming up on year six of the show. And I gotta tell you, I don't get I don't get too excited about breakthroughs or treatments anymore, because we've covered a lot of stuff that frankly hasn't panned out the way we had all hoped. But this is a little bit different. Because Teplizumab is a drug that has already been shown to prevent type 1 diabetes for three years. And for some people, they are coming up on four years. What does that mean? How do we know it's preventing it? Why is it so exciting? And you know, could this mean a breakthrough for everyone with type one, there's a lot to unpack here. So we'll get to that in just a little bit. But we've talked about Teplizaumab before with the folks from trial net, I'll link up this previous episodes at Diabetes connections.com. There's always an episode homepage for each and every episode, which more recently will have the transcription. But for every episode has important links and more information for you.

quick heads up. If you are listening as this episode goes live tonight, Tuesday, I will be with a JDRF with a couple of chapters. Or maybe it's just one chapter now things have moved around a lot for JDRF. But I'll be with the Nevada, Arizona and New Mexico chapters tonight, talking about the world's worst diabetes mom, we're going to have a fun discussion about the book. And if you are in one of those chapters, you're going to get the paperback for free. If you're not in one of those chapters come along. Anyway, I've got some audio books to give away. It's always just fun to talk to you. I'll be reading from the book but having a discussion as well type one talk, it's different times because of the different states and because of where I am. So it's 530 in Nevada and Arizona, and 630 in New Mexico, it will be 830 here in Charlotte, North Carolina, I may be in my pajamas, but I hope you can join me for that. And again, I'll put a link and I've got that out on my social. I've been talking about that on social media for a couple of days.

I've mentioned a couple of times this year that we're focusing on technology. And a lot of that is because 2021 is going to see a lot of FDA approvals, things have been backed up because of COVID. Um, so this year, and next year, I think we're going to see many things kind of bunched up. But some of that technology isn't mechanical, right? It's medical or what we would think of more as biological perhaps. And that's what we're talking about today.

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. That's what I love partnering with people who take the load off on things like ordering supplies, so I can really just 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. Darrius published study Demonstrate high impact clinical results, find out more go to my dario.com forward slash diabetes dash connections.

 

My guest this week is the executive director of medical affairs for Provention Bio. He's also a pediatric endocrinologist and Dr. Henry Anhalt is also very involved with Camp Nejeda. He's on the board there. I believe he was the medical director at one point, but we have spoken to Dr. Anhalt before in that capacity. My cousin goes to camp there he did growing up, I will link back on our episode about camp with Dr. Anhalt because it's a really good one. And especially if you're thinking about diabetes camp, if your local campus happening this summer in person, that's a good one to listen to as well. Provention is a biopharmaceutical company dedicated to autoimmune disease. And they are applying for what's called a biologics license application for to please him up for the delay or prevention of type 1 diabetes in at risk individuals that is in front of the FDA right now. There is a gold date here that the FDA has assigned to them of July 2. So we shall see what happens between now and then. But there's an awful lot to talk about unexplained. Here's my discussion with Dr. Henry Anhalt.Thank you so much for joining me and welcome back to Diabetes Connections, it's good to talk to you again.

 

Dr. Henry Anhalt  6:21

Likewise, Stacey, it's a delight to be back with you again.

 

Stacey Simms  6:25

Well, I'm so interested in this news, which you know, it's hard to get excited after all this time for me. But this is exciting news. But let's kind of set the stage. If I could talk to me a little bit to just start off here. My listeners are familiar with T one detect the program that JDRF came on the show and talked about in in late December about a new screening initiative and prevention is the company that is I guess, you know, doing the heavy lifting here and doing the work to screen people. Can you talk a little bit about the importance of this project?

 

Dr. Henry Anhalt  7:00

Well, Stacy, the first thing I wanted to do is to point out that in addition to the T one detect program, we have the type one tested.com website, which will also give people who are going to that website, additional information about screening, it's important that we take a shift in how it is that we look at type 1 diabetes. And as we all know, mostly everyone's experience. And certainly, that's been the case with my patients as a pediatric endocrinologist, they present and they come to attention when they've been having symptoms, when they're not feeling well, when they are noticed to be losing weight. And a parent says, gee, something's wrong, and they go to a doctor and oftentimes are going from one doctor to another until unfortunately, kids and adults are getting sicker and sicker and then ultimately end up in an ICU setting. That's what we used to think about as type 1 diabetes. But we now know that type 1 diabetes is really in three stages, we know it's an autoimmune disease. But the three stages are really important to highlight, because the first stage is when someone has two antibodies that are directed at the pancreas. And those two antibodies are amongst a number of antibodies. But if you have two or more, you have stage one diabetes, even in the absence of having any symptoms or abnormal blood sugars. And we'll come back to that in just a second. Stage Two is when you have those antibodies or more, and you'll have some abnormal blood sugars, but not high enough to either have symptoms, or for anybody to even recognize. And then stage three is, as I mentioned a moment ago, when typically people have symptoms and they end up sick unfortunately, and seeking medical attention. We won't know whether or not someone is in stage one, stage two or stage three, unless they do things like you just suggested and participate in the T one detect program or have their antibodies tested so that they can identify and understand where they are along that continuum. And so we now classify type 1 diabetes as soon as you have two more antibodies, but even in the absence of having abnormal blood sugar, so it's important because as therapies become more and more available, and we know that there are a whole bunch that are now coming along, some of them are pending approval. So for example, Teplizumab which is before the FDA right now. And we hope that the FDA will look at the body of evidence and the safety and the efficacy. And we currently are targeted to have an approval date in the first week of July. But it's also important to realize that there are lots of other medications that are soon to follow, that may also be of use to people who are along this continuum. for us and for the people that we care about. In the type one community, the ability for a drug like Teplizumab provided that the FDA looks at the data and says, yep, we believe it's safe and effective to prevent people from progressing from stage two to stage three. Without that, we won't know who would be a good candidate for that kind of intervention.

 

Stacey Simms  10:58

I always get a little confused. And I know that for somebody like me, who's a lay person, it seems like we're early on in the research. But the question I always have about the antibodies is I remember years ago with trial net, and they would say things to us like, well, years ago for me when I was learning about trial that they would explain it like, well, kids usually get tested more often than adults, because things can change with children. If somebody has the antibodies, do they always develop the symptoms of type 1 diabetes? Or do we not know that yet,

 

Dr. Henry Anhalt  11:28

the uptake of testing or the routine screening for people at risk has not been adopted widely. And that's important to highlight. And that's why the JDRF is in the middle of this educational campaign is because the fact is that for all intents and purposes, our colleagues that pediatric endocrinology adult endocrinologist are not thinking about getting antibodies, and certainly in children who you would expect, are at greatest risk. Those who have a first degree relative with type 1 diabetes, a sibling or a parent where we know that their risk of developing type 1 diabetes is 15 fold greater than the general population that it would be more widely adopted. But that's unfortunately not the case. And in adults, are point people don't think so one of the challenges with adults who ultimately develop type 1 diabetes is that the family practice dogs or the endocrinologists who may be are not involved, likely not to be involved, because they are in seeing people who are adults who develop diabetes until their 50s, or maybe their 40s. And they're not thinking about type 1 diabetes, the greater challenge with adults is around the assumption that if you're in your third decade or fourth decade of life, that you do not have type 1 diabetes, but we know that that's not the case, because people into their 50s and 60s are developing type 1 diabetes and are continuing to make insulin but unquestionably have type 1 diabetes.

 

Stacey Simms  13:21

I'm curious, when T one detect was announced, a lot of people in the diabetes community thought and I agree with them. It was so interesting, it was such a great idea. Like let's get more screening, let's get more screening. But when I talked to JDRF, they said no, we will we want everybody in the diabetes community. But we want people outside the diabetes community to start thinking about this, what can be done to try to push this message into families that you know, don't think that they have to worry about diabetes? How are you all doing that?

 

Dr. Henry Anhalt  13:49

Yeah, what I really focus on Stacey is the folks who are at risk, okay. And those are the ones with first degree relatives, because we know we have data from global programs where they're doing population screening, they're screening everybody, not only second and third degree relatives of people who have type one, or even first degree relatives, they're screening entire populations. And that's terrific within the context, at least right now, of research programs that are well funded. But we're facing a battle ahead of us as we get people to adopt. And we get the payers and the payer community to recognize the importance, which is part of the educational effort. However, we really need to focus right now for the hearing now, because that's achievable, attainable, and the therapeutic agents that are either before the agency now or that are coming are the ones that are going to be the most likely to benefit. And that's why I think right now at risk is the most important population to look at. Got it.

 

Stacey Simms  14:57

Let's talk about what's in front of the FDA. I remember A couple of years ago trying to pronounce Teplizumab, and then getting really I know, but getting really excited as it seemed to, and you please fill us in, but it looked like the research was showing this is preventing that movement, as you said, from stage two to stage three, so people have the antibodies that show that they have type 1 diabetes, but it kept them from progressing to showing symptoms for two years. And then it looked like three years recently, am I getting all that right?

Right back to the doctor and hold in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen, and almost everyone who takes insulin has experienced a low blood sugar that can be scary. A very low blood sugar is really scary. And that's where Gvoke Hypopen comes in. It's the first auto injector to treat very low blood sugar. Gvoke hypo pain is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give Gvoke correctly, I'm so glad to have something different, 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 Dr. Anhalt. And I just asked him if I was kind of getting your right that Teplizumab had delayed the onset of type one in people for up to three years.

 

Dr. Henry Anhalt  16:29

You're getting that spot on Stacey. And I think that here, it's important to stress that how do we know that they're actually having this delay? Are there any markers that we can look at. And C peptide is the key, because for the listeners, it's important to highlight that this molecule or this protein c peptide is a measure of how much function your beta cells have, how much of your actual insulin is being produced. And the studies have shown and the authors concluded that in fact, those treated with Teplizumab had stabilization of their c peptide production, and in some cases actually improved c peptide confirming that the beta cell function is being preserved. And suggesting I may add that beta cell function is being restored. So it wasn't only this delay, but it was a delay that was marked by a direct measurable compound or protein that indicates beta cell health and beta cell function.

 

Stacey Simms  17:40

When we talk about Teplizumab, what is that? It's I assume it's more than, you know, a pill that you would take once and never have to do again. Is it a treatment? What how do you how do people take it?

 

Dr. Henry Anhalt  17:50

So Teplizumab and I had a really hard time pronouncing that I started working at Provention Bio in December. And I'm finally getting around to it right. And it wasn't only narrow, actually that I heard about Teplizumab when I was working back in 2008, at a hospital in New Jersey, there were these clinical trials ongoing with tech lism ab. And at the time, I became really familiar and saw what the potential that this drug had. But to answer your question directly Teplizumab is administered by IV infusion over a period, at least in the trials over a period of 14 days as one single infusion. So that's the way that the trial that we're talking about the data that we're discussing, that trial had a 14 day single infusion, so IV infusion every day for 14 days straight. That was the data that we talked about was the outcome of that trial. Ultimately, though, the FDA will make the decision of based on the data that exists, how many days of infusion, etc. Got it.

 

Stacey Simms  19:14

But to be clear, when we're saying it's three years later, those people that they're measuring three years later had, it's still from those first and only two weeks.

 

Dr. Henry Anhalt  19:23

That is correct. So people had a two week infusion, and this population was followed out. For quite some time, actually, the recruitment took seven years, but this population has continued and when you have this rolling admission into a trial, it becomes a little bit difficult to to characterize, but suffice it to say based on the appropriate data analysis, that's the conclusion that the authors came to and obviously incredibly encouraged by those results. So with the follow up time, We have nearly a year later, it shows now approximately three years,

 

Stacey Simms  20:05

I may be jumping to conclusions and correct me if I'm wrong. But I'm sitting here thinking, if my son Benny had gotten something like this at 23 months, and we could have delayed the onset of type 1 diabetes, until he almost went to kindergarten like that, to me, I know that there's more implications down the road, but just the idea that he would be able to communicate a little bit better. With me, maybe he could pronounce diabetes, there would be some other things that we could have some really difficult stages that we could have skipped. And I know that you're looking for a lot more than that going forward. But man, that's so remarkable to think about. And I know everybody listening is thinking in their own families, the milestones that can come in three years, it's really interesting stuff.

 

Dr. Henry Anhalt  20:49

Stacey, I have to pause when I listen to you tell that story. Because for me, I have only a glimpse of the burden that people living with type one, or parents or caregivers experience, I have a glimpse, because I have the privilege of stepping into the sanctity of a family and being open to hearing these things. But to your point, what is that? What does that mean to a child or to a family that you can have a delay of two years or three years? Or even longer than that? What does that mean? So this ability to do that the data indicating that this can do that can do exactly what you're talking about? It can delay to a time where kids can be more able to communicate signs of hypoglycemia, a kid in college, perhaps, delay until after college, and so on and so forth. So how do you put a measure on what that means for a family? You know, what that means? Two years or three years being insulin independent? How can you describe that to someone who doesn't quote unquote, get it? What that means to a family? So I know, just like you would, from personal experience, what I've heard from my patients and their families, how much that could potentially have meant, and how much that can mean to them going forward?

 

Stacey Simms  22:31

It really is. It's, I was gonna say, it's fun to think about, I'm not sure that's the right way to say it. Because in my mind, it's kind of fun, because I think about how silly my son was at that age, but it is really encouraging to think about, I'm curious, are there any concerns, side effects, anything that people need to be aware of when it comes to the prism app?

 

Dr. Henry Anhalt  22:54

So you know, I think that every drug has potential risk and benefit. And we have to be fair and recognize that, however, in the data that's been published, from the trial that we've been discussing the tn 10 study, it was shown that the side effects were manageable, that they were easy to address resolved on their own. And that's consistent with all the other studies that have used Teplizumab. So from our perspective, and looking at the data, we feel that it's appropriate to say, yes, there is always a risk, that the side effects that were seen in any of the trials were expected. And were easily manageable

 

Stacey Simms  23:48

as we wait to see what the FDA will do. Are you still looking for people to be in studies?  You know, my audience is always very interested in that. Are there more studies that people can take part in?

 

Dr. Henry Anhalt  24:05

Yeah, so we currently have a study ongoing, it's a multinational study multi site in the US called protect. And this study, as opposed to the data that we've been talking about that showed you can prevent progression from stage two to stage three. This is a study for people who are newly diagnosed between the ages of eight and 17 within the first six weeks, and I would urge people if they have any questions, or they need any information to reach out and Stacey you and I can talk about what the best way to have that information or those queries directed because when we talk to people about going online and looking at clinical trials.gov it becomes As a very, very difficult website to navigate.

But suffice it to say that this is a trial where kids between the age of eight and 17, newly diagnosed are given an infusion or placebo of Teplizumab. And they are given another dose, about six months or a year later. Again, this is an infusion. However, it's a 12 day infusion, rather than a 14 day infusion. And there are two infusions over the year. And in that study, were measuring c peptide. And as I mentioned earlier in the podcast, c peptide, is a measure of beta cell function. And so the most important measure for us is beyond hemoglobin A1C how are those beta cells working? How is the residual beta cells producing insulin at this point? And how do they produce insulin after the treatment has given as measured by what we call area under the curve of C peptide production? The amount of C peptide over time, responding to drinking a whole lot of sugar, and seeing where it is that the that the C peptide is produced? I think that that's really an important piece.

I also, Stacey, if I may take liberty and talk about Provention Bio for just a moment. Yes, please do. Because it comes back to camp a little bit. And you may wonder, like, what's the connection? When I first started at Provention Bio, we had a town hall. And you know, if 45, 50 people I don't remember. And the CEO, Ashley Palmer was talking about the importance of us understanding the type one community and I was like, okay, you know, that's words, know, sounds good. And I said, Okay, is a company dedicated to type one? Okay, that sounds good. And so I chatted the group, and I said, you know, I'm on the board of Camp Nejeda, most of us live in the tri state area, I'd be more than happy to host you and to have you guys pink benches, and, you know, do all kinds of cleanup the garbage in between sessions. And he said, You know, that's not here. That's part of your job. And I said to myself, I've worked in other companies that have been in the diabetes space, I have never heard a CEO get up and say, this is your job. It was mind blowing. And I knew then, you know, I was in the right place. Right. So with that sort of as a backdrop, we are really committed to type one. The innovation here is, I think, a landmark in the fact that it will be the first disease modifying if we get the approval, which we hope, the first therapeutic intervention in type 1 diabetes, since the development of insulin, and potentially the only one that is going to be disease modifying. But we're not just there.

And as we spoke about, were in front of the FDA now with the hope that we'll get approval for the at risk population. But we're also in clinical trials to see the ones who are newly diagnosed. So if unfortunately, they've gone on to stage three or symptomatic, or we're also working on a vaccine for coxsackie virus. And so coxsackie has been thought of as a precipitating agent or, or an infection that could potentially provoke or create an immune response that ends up being adversely affecting the pancreas. And the crazy thing is that as a pediatrician, first we would see coxsackie virus all the time. But you know, I have the good fortune of working in a company with a lot of really smart immunologists and I joke and I say, you know, if I would have known immunology was so interesting, maybe I would have paid more attention in medical school. But the fact is, here's another way that we're looking at type 1 diabetes, and the commitment there to innovation is truly remarkable. And I would be remiss if I didn't have the opportunity to state that on this podcast, because I think that speaks to the motivation and it speaks to the genuine commitment to people and their caregivers living with type one.

 

Stacey Simms  29:53

You mentioned camp, and as we've mentioned a couple of times here you are a pediatric endocrinologist. So you Between the two of those things. You've seen a lot of families over the years, you have probably had a lot of nervous moms and quiet dads in your office with little kids too, grumpy teenagers and independent young adults. I'm curious when you talk about something like to please him on. And you mentioned, as you said, this could be the first therapy, disease therapy it for type 1 diabetes. I know you don't have type 1 diabetes, but boy, are you part of all of those families? Can you speak a little bit about what that means to you?

 

Dr. Henry Anhalt  30:31

Well, I often joke with people that, you know, I would be more than happy to do anything, including working in my parents’ lingerie store, then taking care of people with type 1 diabetes, not because I hate type 1 diabetes, I do. But it's because I see what happened, what families go through. So for me, what it means to me. If again, if we get approval, I'll feel like I've I finally was able to do something, you know, when you get to the point in your career, when you're working with families who have type one diabetes, and you come to the honest realization that you can't fix it, you no surgeon can go in there and cut it out. But you can't fix it. And the burden really sits with the family, the grumpy teenagers who didn't ask for this. So we're dealing with the intimacy issues, college issues, you name it, the high school kids who are trying to deal with their all the complex issues of psychosocial adjustment to high school and body image, etc. It's unbelievable. So for me as a treating physician, anything, anything. And it's not only templates, a map, but anything that could make them living with diabetes just a bit easier to lift, a little bit of the burden would be incredibly meaningful to me. And that's sort of how I got into this, I was trained to make people who have type 1 diabetes feel that they're never doing a good enough job, that they're at risk of developing all these complications. And you know, when you get to the point in your career, you realize that not only did that not help it hurt, and then really being in a position to hopefully be able to make a fundamental difference and how that goes down. It's really hard to articulate, I have to say,

 

Stacey Simms  32:31

Did your parents really own a lingerie store?

 

Dr. Henry Anhalt  32:33

They did. Olga’s corset and specialty shop two Eastern European immigrants who came here penniless trying to build a life for themselves in the golden land.

 

Stacey Simms  32:45

Isn't that marvelous?

 

Dr. Henry Anhalt  32:46

That's wonderful. It sure is. It sure is. Yep. Yep. All they wanted us to see their kids, you know, get an education. And of course, you know, me becoming a doctor. I mean, my dad almost ran up to the podium when I got my diploma. He just couldn't contain himself. So yeah, absolutely.

 

Stacey Simms  33:05

All right. I think we've got everything and more.

 

Dr. Henry Anhalt  33:08

Yeah, I mean, I would leave you Stacey with, if nothing else, to really, really get the word out for people to screen for dogs to really hear from their families. You know, why don't you screen, I have another kid that to us. And I think to the whole community, now, there's potentially something that can happen. You mentioned trial net, and trial net has done an amazing job in getting tech lism ab to where it is now. And they've done an amazing job at moving the screening field forward. But it's got to get out of the realm of research alone now because now where they're now where potentially at the threshold of a whole bunch of therapies that we hope will get approved and capitalism AB hopefully, if the FDA is happy with the data, and convinced that the drug is safe and effective, which we have great confidence that they will or others coming right behind. So the screening is so critical, Stacey,

 

Stacey Simms  34:15

thank you so much for joining me, we will link up all of the information and spread the word as best we can. But thanks for explaining everything and come on back, knock on wood. If everything goes through the FDA, come on back and share what's next.

 

Dr. Henry Anhalt  34:27

I would be delighted to do that.

 

Unknown Speaker  34:35

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  34:40

More information on everything we talked about at Diabetes connections.com. You can learn more about teplizumab and provention. It's really fascinating stuff. And you know, it's not as easy as you know, one shot and you're done or one pill a day. I mean, it is as he mentioned, a an in hospital procedure, but imagine two weeks of that And then two, three, maybe four years, maybe more of prevention of type one. I mean, what an incredible beginning. I don't get my hopes up often you know me if you've listened for a very long time I I wouldn't say I'm cynical, but I'm certainly not running after every development. But I feel like we've been watching this one for so long, I'm almost ready to put my rose colored glasses on, we'll see, I'll keep you posted on you know what comes out of this, what the FDA decides, and you know, there's going to be a lot more information down the road.

Up next in innovations. f It is time to get cynical again, I'm going to be talking to you and bring you some audio about a roundtable on insulin pricing. So stay tuned for that. But first Diabetes Connections is brought to you by Dexcom. And you know, when we first started with Dexcom, back in December of 2013, the share and follow apps were not an option. They hadn't come out with the technology yet. So trust me when I say using share and follow apps makes a big difference. I think it's really important to talk to the person you're following or sharing with, get comfortable with how you want everyone to use the system. And even if you're following your young child, these are great conversations to have at what numbers will you text, how long will you wait to call that sort of thing. That way, the whole system gives everyone real peace of mind. I'll tell you what I absolutely love about Dexcom share, and that is helping Benny with any blood glucose issues using the data from the whole day and night and not just one moment. Internet connectivity is required to access separate Dexcom follow app. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

Last week, a new group or at least new to me called investigate insulin now partnered with the American economic liberties project and held a discussion about the impact of insulin pricing. I'm going to read you the description from their website.
“Nearly 7 million Americans suffering from diabetes need insulin to live but a cartel of drug companies who control the production of insulin, Eli Lilly Sanofi and Novo Nordisk have made the lifesaving drug criminally expensive by colluding with each other to hike prices in lockstep over and over and over for years.

On March 18, at 12:30pm, the American economic liberties project and the investigate insulin now campaign hosted a discussion focused on the dangerous impacts of the insulin cartel racial inequalities in insulin access, and what Congress and the new Biden administration must do to hold these corporations accountable and address concentration in this critical industry.”

And that is the quote from the website. I'm going to link this up, you can watch the entire discussion. It is less than an hour, but it features Congresswoman Katie Porter, who you may recognize from her whiteboard. Many people just know her from that. But she's part of the oversight Subcommittee on economic and consumer policy. And then the remarks here are from people with the American economic liberties project to an international insulin advocates, the executive director of Social Security works. So there's a lot of people talking here I want to bring you one short clip. This is about a minute long. And this is Matt Dinger. He is a patient, as you'll hear, he is an advocate, and he is a board member at T one International. He has just said that he doesn't know anyone who uses insulin, who hasn't rationed it at one time or another. And he sets up His comments here by saying that at one point he had no insurance for just one month he was switching jobs, and he knew that he would have no insurance for a month. And that resulted in him rationing insulin ahead of time. So he would have a stockpile, and then also rationing after he got the job and had the insurance because he knew his deductible would mean he would be paying $1,000 a month for insulin for the first few months.

 

Matt Dinger  38:51

I'm lucky to be in the position that I'm in. And even so I'm a job loss away from financial ruin. Because the concentration of economic power when it comes to the price of insulin lies almost entirely in the hands of three companies. I am completely beholden to them. And I'm terrified by that every single day. Corporate concentration and monopolistic behavior by the big three insulin manufacturers allow them to set prices as high as possible, with no fear of losing market share. This includes things like shadow pricing, which is increasing the prices in tandem with one another instead of competing to set the lowest price, pay for delay agreements, lawsuits, taking biosimilar insulins off the market, patent games to extend their product exclusivities long past when they would normally expire.

As someone who has worked in healthcare for the entirety of my professional life. I understand the price of innovation. And let me tell you leveraging anti-competitive practices in order to give your CEO a pay package of $23.7 million isnt innovative. and businesses that would do that while their consumers are dying aren't companies, they’re cartels,

 

Stacey Simms  40:01

it's pretty powerful stuff. I'll link it up. If you want to watch it, it is less than an hour. The investigate insulin now campaign is a coalition of a bunch of different organizations. And I think we're going to be hearing a lot more from them, because these are some pretty big names that are backing them. And while there's a lot of hope that the new Biden administration will move on some of these, there really has been no indication from Democrats or Republicans, in my opinion on the federal level that we will see strong action taken. So I'll continue to keep you posted on this one as well. I can't imagine the insulin companies are going to take kindly to being called a cartel. I thought that was some very interesting language.

Alright, before I let you go reminder that I will be speaking live to some JDRF folks out west tonight, that's linked up on social media and in this episode, as well. And if you know, if you're listening a couple of days or weeks after this episode airs, I'd love to come to your chapter virtually, or maybe in person down the road. So please reach out we do have an event tab at Diabetes connections.com. And you can always request me to come speak or just you can ping me anywhere, email me directly. I love talking to groups. It's always so much fun. I always learn something as well.

In our classic episode this week, we're going to be talking to a Broadway performer Maddie Trumbull, and she has played lead roles and Wicked and Newsies. And we'll check in with her and see how she has been doing this interview was five years ago now. And of course, the last year has been you know, we've seen Broadway completely shut down. So I checked in with her and I'll let you know what she is up to in our classic episode airing in just a couple of days.

Thank you, as always to my editor John Bukenas from audio editing solutions. thank you as always for listening. I'm Stacey Simms. I'll see you back here soon. Until then. Be kind to yourself.

 

Benny  41:57

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

Mar 18, 2021

Julie Allred received two separate islet cell transplants ten years ago. How is she doing today?

Diagnosed at age 10, Julie was told she would never have children and she wouldn't live to see age 30. She’s proved her doctors wrong on both counts – her daughter was married a few years ago – but she did have a lot of trouble with unpredictable and debilitating lows in her 30s. These lows were so unpredictable and dangerous that she not only stopped driving, she barely left her house. Then she found out about a clinical trial of islet cell transplants.

This interview was first aired in January 2016

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Episode transcription:

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by Inside the breakthrough, a new history of science podcast full of did you know stuff.

 

Announcer  0:13

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:19

Welcome to a classic episode of the show. As always, I'm thrilled to have you here. Glad you could join me. And these classic episodes are where we revisit terrific interviews, really great guests from the early years of this show that you might have missed the first time around.

There is a new excitement right now about islet cell transplants, this thinking has been around for a while. But the problem has been that once the cells are transplanted, they're immediately attacked, you know, so the islet cell trials of the late 90s and early 2000s, didn't pan out the way that we had hoped. But new science, new technology is showing a ton of promise. And we're going to do some future episodes on what's in the works. There are at least two really big projects moving to clinical trials. I'm thrilled about this because it always seemed like it made so much sense. And this kind of stuff was around right as we were coming into the community, me and Benny and my family 14 years ago, it was kind of the tail end of when they realized that while it worked well for some, it wasn't going to be the cure type of research for many, many people that it had shown so much promise to be. But it really is important to remember that islet cell transplants worked really, really well for some people and you're going to hear from one of them today.

I spoke to Julie Allred in January of 2016. More than five years ago now. She was diagnosed at age 10. And she was told she would never have children and that she would not live to see 30. She has proved her doctors wrong on both counts. Her daughter was married herself few years ago. But Julie did have a lot of trouble as she moved into her 30s with unpredictable and debilitating lows. These low blood sugars were so unpredictable and so dangerous that she not only stopped driving, she barely left her house, you'll hear her talk more about that this was not your typical low that almost everybody who uses insulin has experienced. Then she found out about an islet cell transplant clinical trial. She shares the whole story and I'll give you more of an update on how she's doing in just a moment. Spoiler alert. She's doing amazing.

This episode of Diabetes Connections is supported by inside the breakthrough a new history of science podcast full of did you know stuff. The most recent show is all about unpopular science. One of the stories, it's bonkers. It's about a scientist who discovers the importance of washing your hands. The death rate at his hospital drops once he starts telling people to do this. But then they think he's insane. They discredit his theory and they lock him up and they stop washing their hands. You have to hear it. You can find inside the breakthrough wherever you found this podcast, and this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Judy Allred had two islet cell transplants, one in 2011 and one in 2012. She is going to tell the whole story here in just a moment. But I want to give you a quick update on how she is doing now. 10 years later, she says she still uses just a few units of basil insulin a day. She does wear an omnipod but she says she uses it just for basal. She very rarely boluses. And she says the only time she goes low is if she quote makes a bad decision when bolusing for food because she's so rarely does it anymore. This really changed her life. I should also mention that I know Julie because she was our elementary school nurse. That's who I got to send a little Benny to when he was in grade school. How lucky was I?

Julie Allred. Thank you so much for joining me.

 

Julie Allred  3:57

Thank you for having me, Stacey. I'm excited to talk with you. Yeah, I think this

 

Stacey Simms  4:00

is gonna be fun. It's always great to. For me, it's always interesting to learn things about people with type 1 diabetes, but it's also fun when I get to talk to to a friend. So thanks for agreeing to do this. Tell me your story. Yeah, tell me your story. You were diagnosed with type one, when you were just 10 years old, right?

 

Julie Allred  4:20

I was 10 years old and that was in the late 70s. So why can I tell people always that was before we had all the technology of course that we have today before we had manmade and storm. No glucometers we didn't even have Diet Coke. You know, what was that good old unsweet tea with a saccharin tablet. Those were your choice.

 

Stacey Simms  4:42

That's amazing to think about. How did you how did you manage diabetes before home meters.

 

Julie Allred  4:50

There was no homie here correct. So I use urine that we put in the test tube with some little tablet sets. He has done turn colors and it was a good gang. If you only do that, if you felt bad, there was no certain schedule to when you tested your urine. And as you're probably aware, urine sugar in your urine shows up about six hours after it shows up in your blood. So really, when you tested that urine and found out, you know, you had sugar there, it was well beyond the time that your blood sugar would have been half. And you didn't do anything about it. When you saw it there, you just made you aware, there was that insulin you took in the morning insulin, you took it bedtime. And in the middle of the day, there was nothing, there was no sliding scale, there was no carb counting. Nothing like that we ate by the exchange diet, which some people may be familiar with, and maybe not the day, but so many carbs, so many fats, and many fruits and vegetables. So all the things that everybody is familiar with now all the technology, all the things we have to keep ourselves healthier and and make things easier for non existent bands.

 

Stacey Simms  6:04

Now I've heard you speak and you've talked about how the doctor said you were not expected to live to 30 that you would never have children. Of course, you do have a great a daughter who I've met. But But did they really tell you that? Or was that something you were just aware of?

 

Julie Allred  6:20

They never told me I found that out and my 30th birthday party. Because my husband had a birthday party for me, of course, my family came my daughter was three at that time. So uh, my mom's sitting in the corner crying, you know, we're having a party, I'm like, what's wrong. And that's when I found out when she told me there, that when you were diagnosed, they shared with us that you were not expected to live to age 30. And that you definitely would not be able to have children that was just not in the cards for people who are diagnosed. And again, you know, diagnosis, disposable syringes were the new thing. So just all the technology that that has come about, exist in the time that I've been living with diabetes is amazing.

 

Stacey Simms  7:07

I'm just trying to have the perspective that your, your mom,

 

Julie Allred  7:10

your mom had? Well, I think about that. And you know, you mentioned I'm a school nurse, my school nurses, when I was a little girl that That being said, I didn't check my blood sugar at school. So mom packed my lunch, I ate that. But other than that there was not really anything, per se to do for me at school, you know, unless I complained about not feeling well, or something the teacher would call her but they're just the things that are available today. The things that we do today to manage things so closely. We're just not available Batman. So yeah, it was not a concern.

 

Stacey Simms  7:46

I'm just trying to think of her being told you would not live to be 30. And then being at your party, must have been an incredible ride for her. But as you got older, you began to have some real difficulties living with diabetes. I know you had a lot of episodes of low blood sugar. Tell me about that.

 

Julie Allred  8:05

My dad, so I did very well, I actually, you know, got a insulin pump in 1990, of course, glucometer in the early 80s. So I was kind of always trying to stay on the cutting edge with technology and have the newest latest and greatest thing to help me manage. And I did really well. I still was doing really well as far as how I had managed, not that I always did absolutely everything I should the best I should. But I had been fortunate enough to not to experience any of the complications that are a lot of times associated with type one didn't have any problems with my kidneys, I had great steel. None of those things that a lot of times people began to have problems with as they move into 30 plus years with type one. And I was 34 years with type one, the problem that I was experiencing, experiencing was those unrecognizable low blood sugars. And that started probably in 2007 or eight somewhere around there. It it became more difficult for me to know when I was having a low blood sugar, the symptoms changed. And they became less evident to me. And as time went on, they just eventually just went away. I didn't have any signs or symptoms until I was so low that I couldn't help myself. I would get to the point where I realized that I needed to do something that at that point, I couldn't do anything for myself. I had to rely on someone else. So you were in that slow traveling.

 

Stacey Simms  9:46

You were driving, right?

 

Julie Allred  9:49

I was driving. And many times I would even was married that's my daughter who was now will be 21 next week at that time she was you know in her Team so not driving yet but a couple times we'd get to a stop sign or a stoplight and she would put the car in park and take the keys away and call my husband because she knew you know that it wasn't safe. And I did have a couple episodes where I ran off the road. Fortunately for me, and others never hurt myself or anyone else. But it the discussion, the next discussion at my doctor's appointments going to be taking my driver's license away, because that was unsafe.

 

Stacey Simms  10:27

It's so scary to hear about.

 

Julie Allred  10:29

All that being said, I still had the latest and greatest, I still have the newest pilots. I had a dexcom CGM. At that point. I was doing all I needed to do. And of course, my medical team was doing all they need to do to help me. It was just that that was my complication. I guess you can put it that way. But I just was not able to feel those lows and do anything about them. And enough time to help myself.

 

Unknown Speaker  10:55

Is that how you get into work was

 

Julie Allred  10:57

not an option either. Yeah, I was working about 10 hours a week was all I could manage?

 

Stacey Simms  11:02

Is that how you were able to get a trial?

 

Julie Allred  11:05

Yes, that is how I was able to get into the trial because I laugh and tell you how to be a fairly healthy, unhealthy diabetic to qualify for the study that I participated in. That being said, you could not have any kidney issues, all those things that I talked about that I was fortunate not to have experience. But the low blood sugar. The hypoglycemic unawareness was the key to qualifying for the study I participated in. So they asked me about how many low blood sugars I thought I had in the past year, that one of my first visits, I have no idea. I was horrible. I was mad at writing down my blood sugars. But we went back and looked at at the month, at one month that had passed. And from that guesstimated that over a 365 day period, I probably had 300 I think we came up with 386. Wow. was until a by definition for them a low of anything. 54 below.

 

Stacey Simms  12:05

Oh my gosh.

 

Julie Allred  12:07

Right. Wow. How did you

 

Stacey Simms  12:09

feel during this time? Was this something that you were used to? Or was it did you feel lousy every day?

 

Julie Allred  12:17

No, I said, I felt bad. And and the left felt bad. But I didn't realize how bad I felt. A lot of it was my normal. I slept a lot. You know, when I was at home. I felt like I never slept well. And I guess I probably didn't two, between two and three a 3am was probably my worst time. That's when I would have the most severe loads. And of course, you know, everybody else is asleep, too. So that makes it even more difficult. But I just always my, my constant thought was when I could lay down if I got up to do something, it was how quick Can I get finished with it. So I can sit back down so I can lay back down. Because to me all I saw, you know, 15 minutes of laying back down, and I'll feel better. And that was just never the case.

 

Unknown Speaker  13:10

As

 

Julie Allred  13:12

I didn't do and the probably the year, year and a half before my transplants I was became pretty isolated. I didn't say that at the time. But I say that now, I just didn't go and do things. I didn't go out of the house a lot would find an excuse not to go to a party or you know not to go to dinner with somebody because I was always afraid of what was going to happen when I was there. And I of course didn't do anything by myself. Nothing. I didn't even go to the grocery store alone. Somebody was with me all the time. So that was very frustrating for me. And for my family. Of course, let's talk

 

Stacey Simms  13:50

about the clinical trial, you have been through two procedures right for transplanted pancreatic islet cells, the cells that produce insulin in 2011 and 2012. And I'm gonna I'm gonna walk through this, so tell me if I get this right. But this is the operation where basically they they put the islet cells into your into the liver, right, which helps. And then they take over the job of making insulin. When you went through this, did you know was it the kind of trial where and I forgive me for my ignorance? Are there people getting placebo islet cells? Or is it all everybody gets the real thing because you're going through surgery and you know,

 

Julie Allred  14:33

right? Everybody gets the real thing? That's correct, because these are human hours that are that are donated from organ donors just like any other organ would be donated. So they use the whole pancreas normally for a pancreas transplant. But a lot of times even when you have a donated pancreas, it can't be used because in the process of organ donation, you know, of course thanks at a higher level some things at a higher level level than others, the kidneys and pancreas work together in the body and to to isolate both of those organs. Of course, the kidneys are more useful, you have two kidneys, those can go to two separate people, all the necessary blood vessels that are needed to do those transplant go to the kidneys. First, the pancreas is next on the list. So a lot of times even though you have a pancreas that may be suitable to use, you don't have all the necessary blood vessels that go with them. So that keeps it from being available for transplant as a whole organ. So what they do is use that organ and isolate the eyelet sales from that pancreas and transplant them. And that is how I received the alpha cells I received. How, yes, that's what see those on the waiting list for a heart or, or lung or kidney or whatever, and the head has to be matched in the same way you have to go through all those all those same steps. And then check with your organ donor.

 

Stacey Simms  16:00

Do you then after the surgery take immunosuppressant medications?

 

Julie Allred  16:06

Yes. How is that because everyone that

 

Stacey Simms  16:09

I'm sorry, Julie, everyone that I've heard talking about this, they always say, Well, that sounds great. But the drugs you have to take to prevent rejection are so harsh. How is your life since then?

 

Julie Allred  16:21

Well, it took a little bit in the beginning to get all those things regulated. And and I'm not saying it was easy. But it was a lot easier than what I had been going through. So taking those five or six pills a day seemed like nothing to me, compared to the life I had been living compared to the to a low blood sugars to not being able to work, all those things that have, you know, had gone on before. I did have a little problem with Jia upset in the beginning. But again, it's just getting all their things regulated, you know, for each individual. And that happens with anybody with a transplant. And once that happens, I did not experience any terrible side effects. I still take those medications on two times a day on a daily basis. And they're just part of just part of my life. Now, a lot of people say, Oh, you have to take pills now. I do. But all those other things that were issues or are not issues anymore. And I guess it depends on how you look at it. And it was a wonderful trade off for me. I would do it 100 million times over again, all the all the bad parts, the good parts, were just a million times better. Well, here we are five years ago, there were issues right here we are almost five years later. And when I been here, kind of not participated in that study, I would say I would not be unfortunately. And I am I have a driver's license, I work a full time job I volunteer I'm engaged in, in the life of my child and able to participate and do things that I have always wanted to do. But always felt a little bit hesitant to do and especially in this, you know, four to five years prior to the transplants that I just didn't allow myself to do those things. So people say well, you have a normal life, not really life like I've ever known. That's a good point.

 

Stacey Simms  18:21

Tell me about what you do for diabetes because I remember reading that initially at least after the surgery you still worn insulin pump Do you still check your blood sugar? What do you do now? Do you consider yourself cured?

 

Julie Allred  18:34

If you can't say cure technically and no I'm not because I did were the insulin pump after the first transplant because even though those eyelets were working, I didn't get the equivalent number of hours to what you know a normal person would have. So I continue where my insulin pump I went from taking 75 units and on a day to 11 units between that first and second transplant and then after the second transplant I was insulin free for 96 days completely insulin free. Again I had a little issue with some of the medications and of course the major side effect to those medications or damage to your kidneys and or pancreas. So they did damage I had some toxicity to one of the medications and they believe they damage the islets a little bit. So I started back on insulin and June after the second transplant unsavoury of 2012. And I've taken a small amount of insulin at bedtime since then,

 

Stacey Simms  19:39

but that's it. You're not wearing an insulin pump currently.

 

Julie Allred  19:41

I'm not wearing it and so on top. I do not have low blood sugars. I do not have high blood sugars. Do I eat whatever I want. Not whatever I won't I just don't think that's in me. I mean, there's still that there's still always that After in the bathroom, I'm always thinking about what I'm eating, how many cards bed what you know, what would that do? What is it going to do now? Because that's part of being in the study? Is there not a lot of answers what to expect in the future? That's part of participating in the study is, we will let them know what to expect in the future just by following us. And there were 273 participants in the study that I've participated in. So we're part of what's going to happen in the future. They're getting all that information from us. So yes, they still follow me. Yes, I still check my blood sugars and provide them with that data.

 

Stacey Simms  20:36

But would you mind if I asked him, please don't answer if it's too personal. What is your typical blood sugar?

 

Julie Allred  20:42

And my last day once he was 6.20? Wow. Yeah, right there. Again, right on the edge. Technically, if you look at the textbook standard, Dima non diabetic, maybe not. But I'm a million times better than I've ever been absolutely. Great.

 

Stacey Simms  21:00

Before we leave this part behind, because I definitely want to talk about the school nurse component. Tell me about the

 

Unknown Speaker  21:09

visit the rosebowl

 

Unknown Speaker  21:11

talk, tell me about right.

 

Stacey Simms  21:12

Yeah, the Rose Parade. Tell me about the Donate Life. Rose Parade, the float that you were in for Donate Life.

 

Julie Allred  21:19

Right. So in 2000, January 2014, I was the first islet cell recipient to add on the Donate Life float in the Tournament of Roses Parade. And so I ratters on that. Riders on that float are all transplant recipients, and all the float as well, or floor graphs or pictures of donors that are honored on the float. And then there are also people who walk around the float and those people are living donors. So they've all usually donated kidney. And Donate Life has had a float in the rows pray for I believe this was the 12th or 13th year. So I was sponsored by Emory Transplant Center to go and represent Emory transplant and outsell recipients on the donate lifeflight. What was that? That was amazing. Very, that was an amazing experience. So you know, I've always watched the Rose Parade on TV and think how fabulous that is and and realize it Yeah, that's a big deal. That's a big parade. But I had no idea until I went participated in the whole event. And we were there for six days, you know, a few days leading up to the price. So I was honored to be able to help decorate the float place all those, you know, some of those roses on that float. So the donatelife float, the bottom of the float is always decorated with resins that are dedicated either in honor of memory or memory of someone. So they all have a personal tag with a handwritten note. And so I was honored to be able to place those verses on the float. And the rule is that you read every note on every rose before you put it on the float. So that was that was really a special experience for me, David, my husband got to go with me and help. As we decorated, we spent three days helping decorate the float. And then of course, I read it on the slide on New Year's Day. But again, a tremendous once in a lifetime experience to meet so many wonderful people from all over the country and other parts of the world as well. transplant recipients, donor families and those special living donors. Wow,

 

Stacey Simms  23:28

that's an incredible experience. I was so exciting to see you part of that. So Julie, we've known each other for few years, because of the local jdrf chapter, you've done so much work with them. And, you know, I was on the board for a while there and we've kind of circled around each other. But then a couple of years ago, you became our school nurse. And so I have to put a caveat out there as we begin this conversation, I promise I'm not going to ask you anything specific. I understand the HIPAA laws and I understand the constraints you may be in. Because you know people may know what school you work at. But I just thought it would be a great opportunity. Because I talked to a lot of parents who have difficulty dealing with their school, the school nurse or the school principal, or teachers don't seem to understand the needs of kids with type 1 diabetes, they they may insist that the kid go to the nurse for every single thing. They may be frightened of the kid. And I was just curious if you could share some advice. I know you and I have such a wonderful relationship and we never give you any trouble and our child is an angel so we'd have to go down that road.

 

Julie Allred  24:34

But they all of course,

 

Stacey Simms  24:36

what but you know, it's interesting before, I should point out, we have four kids at our school with type 1 diabetes, all of whom manage very differently. It was very different, right? Not even in terms of the technology because there's different pumps. One child has been on MDI until very recently, transitioning from injections, but every parent is so different. And it's been a lovely experience because the school has Never said to any of us, you need to do it this way. What's your advice for parents, though, for working with this, right?

 

Julie Allred  25:06

The biggest piece of advice I can give to parents is to meet with your teacher and meet with your school nurse. I guess I'm sort of at an unfair advantage when it comes to managing my children and helping them manage at school and the relationship I can have with them, because I've lived with type 1 diabetes, and that that does give me a very different perspective. As you know, and as most of the parents know, the understanding that the the general population has a type one is sometimes a huge misconception. And, and to help them understand the communication between between the parent, the teacher and the school nurse is the key. They have to be able to understand and you are the person to help them understand your child. The other part is that every child is different. And I think that's hard. Sometimes for teachers, especially a little bit hard for the nurses as well, because there is no black and white with type one. Every child is different, every day is different. Sometimes every minute is different. And you just have to be able to go with the flow a lot of times and so there's not all you can't always answer every question for them and give them give them an example of everything that might happen. You know, in a school day, it's all about communicating again, with a parent, the teacher, thing about that school nurse as a teacher communicating with the child. Like your son, a lot of these children are diagnosed at a very early age. And even sometimes by the time they get to kindergarten, they've been doing this a while. Yeah, they know a lot about type one. They know a lot about how domains things themselves. And sometimes that's hard for people to understand that a kindergartener really can't check their own blood sugar, they really do understand, you know, how this technology works, that these kids do. So having that relationship with the child, for the school nurse to have that relationship and the teacher, to have that relationship with the child and keeping the lines of communication open, I think is the most important thing. Again, because they all managed differently. Nobody way is right or wrong, nobody has better than another's. It's all based on that that particular individual child and what works best for them.

 

Unknown Speaker  27:35

What I love about you, and if you

 

Julie Allred  27:37

can continue what you do at home, if you can continue that at school, it just makes it so much easier for everybody, for the parents and for the children. And the teachers, I think and the nurses say eventually that it makes it easier for them as well.

 

Stacey Simms  27:50

Oh, yeah, you don't want to change management, I was just gonna say, what makes me laugh. And what I love about you, too, is you do know this so well, that, you know, My son has gone through times where he's been, oh, my diabetes, or he'll give somebody that puppy dog eyes. Oh, and you don't get into any of that. It's great. You're just like, Look, I know what you're doing. I know where I've been, you know, go back to class or, you know, we'll deal with it or whatever. And I think that that perspective is so valuable and wonderful, they really appreciate that. But if if a parent is, really, I think a lot of this comes from fear. That there there may be, as you said, misconceptions, and I see a lot of parents, especially online, who will write things and they're just on Facebook, they don't really mean it, I think half the time, like I'm going to go to school, you know, I'm going in swinging, or I'm really upset, and I'm going to give them a piece of my mind. Can you speak to that for just a moment, just in terms of, you know, trying to, I always tell people, you know, approach as a team, even if you hate these people, they got your kid for eight hours a day.

 

Julie Allred  28:52

Right? They do. And I can say, not as a parent of a child with type one. But as, as a type one who works with these children that have type one and, and I know, I feel like where they're coming from a little bit better, maybe then not better than a parent does. But in a different way than a parent. I get it that it's hard to trust someone the first time that you send them out of your sight. To know that they're going to be taken care of like you take care of them at home. So again, approaching it like you said, as a team, sit down with everybody don't have the separate meeting with the teacher and the nurse, everybody meet together so that you're all hearing the same thing at one time you come up with a plan that works for everybody, because a lot of times nurses not aware of every the schedule in every classroom, and a lot of times everybody in the second grade does things pretty much the same, but a lot of times they don't So again, it's knowing all the specifics of what goes on even hour to hour during the day and how we can best manage that during the day. And then what do we do? If there's a problem? You know, who's responding, who's gonna call Who? And then even comes down to sometimes, you know, does the nurse needs to call the parent? Or does the teacher need to call the parents? And just coming up with the sample the answers to questions like that, but don't get you bogged down during the day, when there's so many other things going on. Meaning as a team, listening, what the child has to say to is very important, because they're the one living in that environment. They know what they're comfortable with. They know how comfortable the teacher how comfortable they are with the teacher, how comfortable they are with the nurse, how long does it take them to get to the nurse? If they're not in their classrooms, if they're in another area of the building? You know, how long does it take to get there? What should we do then involve the child because again, these kids are smart. Most of them are very independent. And they have a lot of good ideas and information that I think we need to consider and take into, you know, taking into consideration when we're making the plan for the for the school day. It's great advice. A lot of it is to I think people are very intimidated by the fact you know, especially a new teacher, maybe who's never dealt with this. Again, sharing with him and showing them bringing the child before school starts if you can, if they're newly diagnosed tremor day or two before they're going to be there a whole day, and let them see the child checking their own blood sugar, administering their own insulin, using their insulin pump, that they really are independent. A lot of times when they do they need a second set of eyes. Do they need adult supervision? Yes, they do. But many times, that's just what it is supervision, double checking. These kids know what to do. Yeah, that's

 

Stacey Simms  31:59

a great point. We've done that with a lot of teachers. And once they realize that they're that they're not going to become a nurse or doctor while they're to die. That really assuages a lot of fear.

 

Unknown Speaker  32:09

So Julie, what's next for you? Does

 

Stacey Simms  32:11

this those trials continue indefinitely? Do you go back for periodic checkups? Are you scheduled for more surgery if I can be super nosy and ask

 

Julie Allred  32:20

right now, just yearly checkup? am considering another transplant that's kind of out there on the horizon? It may be a little while. And then there are all those things like encapsulated owlets that are going on right now. So there will be another adventure for me, let me just say that I'm just not sure what it is yet. But in the meantime, I'm happy to be working in school to be sharing my experience with these kids. And people say you know, you've had such success. Yes, I have. Has it changed my life? Absolutely. It has has it changed the life of my family? Yes. But it's also changed the lives of other people. I said, this goes way beyond me. Hopefully it's changed, eventually will change your life safety and the lives of all the kids and all these parents and they're dealing with this on a daily basis. And whatever they learn from me, whatever successes I have, whatever mistakes that we've experienced, we learn from it all. And so the hope is that down the road, we're all going to have the experience of living those days without type 1 diabetes. That's that's just what I'm looking forward to.

 

Stacey Simms  33:38

You know, I love doing this podcast, but it is hard to be a news interviewer when I'm trying not to cry. I tell you, Julie, when you talk about this, I don't know if it'll be this type of transplant, or it'll be encapsulation. But I know that the information that comes from people like yourself, who who sacrificed I know, you say it's good that you did it. It's wonderful. But you've sacrificed a lot to to get to this point. I know that information will help people and thank you so much for doing that.

 

Julie Allred  34:09

Absolutely, I would I would do it a million times again. Julie, thank

 

Stacey Simms  34:13

you for talking to me for sharing your story for making me cry. That wasn't fair. I really appreciate you joining me today.

 

Julie Allred  34:21

Absolutely appreciate you speaking with me and appreciate our friendship, and all that you do for the tight bond community. I mean, you are the go to person in this area. And we love hearing you and we we truly appreciate all the information that you get out to us, sometimes on a minute to minute basis. It's really it's valuable information. And if people ask me again, why I'm still you know, involved because it's, it's part of who I am. I want the best, not only for myself, but for all of you as well. And it's just it takes it takes the whole community to support each other and we need to continue that support and we thank key for all you do to provide support to the type one community.

 

Stacey Simms  35:03

I'm leaving it there because I'm gonna start bawling.

 

Unknown Speaker  35:10

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  35:16

I'm gonna link up some stories that were done on Julie in the past and some information on clinical trials and islet cell transplantation. I'll put that on the show notes at Diabetes connections.com. And the episode homepage as always has a transcription, I do have to share one embarrassing story. It's embarrassing for me. I remember hearing Julie speak for the very first time Vinnie was not yet in elementary school, so and she was not even at that school yet as a school nurse. But I heard her speak at a jdrf event. And I'm embarrassed because I kind of didn't believe her. I was in a moment of time. And I don't know how you reacted when your child was diagnosed, or when you had your own diagnosis. I did not want to hear about cure, I was very cynical, I was closing my heart to those things. I just didn't want to hear it. I just wanted to get through the next couple of years of learning how to do this and keeping him healthy. And that was just my reaction. And when she spoke about islet cell transplantation, I was not in the right place to hear the message, as some people might say, and I talked to her afterward, I don't think she even knows this. And I was just kind of politely nodding. And people were saying, you know, oh, you should talk to her for your blog, because I was blogging at that time. And, you know, it was on the local radio. So you talk to Julia, what a cool story in my head, I'm going well, I'm not gonna do this. This is false hope this is good for anybody. And this is going to work. You know, I think I was just in the wrong state of mind. And so I'm glad I spoke to her. I'm glad I learned more about her story. And that, of course, when I started the podcast, she was one of my first guests very excited about the future of islet cell transplantation. Sure what she went through is not a cure, and it didn't work for everybody. But you can hear how much her life changed. Absolutely amazing. I'm thrilled. Think about all the stuff that they learned from it. Just great.

Okay, coming up next week, I'm talking to the people from Pro vention. I say it very clearly, it's not prevention, it's prevention. This is the company behind to please him up, which I say as clearly as I can. That is the drug that is showing such promise of delaying the onset of type 1 diabetes. It is in front of the FDA right now. We'll be explaining the whole thing. But the great folks from prevention. By the way, the gentleman who works there that I'm talking to is not only a pediatric endocrinologist, he is a diabetes camp guy. He's the director of a big diabetes camp. And so he gets it and he gets emotional just like the rest of us. I really enjoyed talking to him. That's next week. Thank you so much to my editor john bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Benny  37:46

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

Mar 16, 2021

How do you treat lows? We're not just talking about candy vs juice. Treating lows also means managing expectations, considering mental health and even addressing other people's reactions. The authors of the new children's book "When I Go Low" join us for a great discussion about what can be a frightening issue for kids and adults who use insulin.

Mike Lawson and Ginger Vieira both live with type 1. They explain the thinking behind the book and talk about their own experiences with low blood sugar. Stacey shares her experience as a parent of a young child with type 1 who couldn't articulate when he felt low.

In Tell me something good, I checked in with the folks from Children with Diabetes Friends for Life.  And I have some fun, professional news about Benny.

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!

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Episode Transcription:

 

Stacey Simms  0:00

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

 

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:28

This week I'm talking to the authors of the new book When I go low, Mike Lawson and Ginger Vieira have lived with type one each for a long time and they have their favorites when it comes to treating lows.

Ginger Vieira  0:41

Gummy lifesavers, I really like because they don't freeze and they don't rot. So I put them in the car. Each gummy lifesaver has four grams of carbs, I think Skittles do freeze. It's very hard to chew frozen Skittle but they also have one gram of carb. You gotta keep stuff in your car.

 

Stacey Simms  0:56

your car frozen up north down here in the south. We worry more about stuff melting this time of year, Ginger and Mike and I go in depth on lows treating managing mental health around them. And how those of us without diabetes might better support our loved ones during and after lows

In Tell me something good. You all wanted to report good news at medical checkups. So we'll talk about that vaccine rollouts. And I have some fun, professional news about Benny, 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. I am always so glad to have you here. We aim to educate and inspire about diabetes with an emphasis on people who use insulin. My son Benny was diagnosed right before he turned two more than 14 years ago. 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 love talking about children's books. And not just because my kids are old now. And all the children's books are put away in a closet. But it's such a wonderful, wonderful tool when you're teaching not just about diabetes, but about so many things. And of course, when Benny was diagnosed, he was so young. You know, he was 23 months old. We were reading tons and tons of picture books anyway. And one of the first things I did was look around to try to find something and short there were some terrific diabetes books for kids back then our favorite was one called Jackie's got game. I don't know if that's in print anymore. But there just weren't a lot of books. And now Gosh, I feel like every other week a new picture book for little kids with type one is coming out. And that is fantastic.

You know what we need more of? And Mike and Ginger, maybe you can get on this. I think we need more books for middle schoolers, older elementary school kids, even high school kids that aren't so much about type one, but have a protagonist with type one. And it's just there. There are a couple of books like that we've talked with the author KJ Howe wrote a book I'll link that up. Kurt Anderson has a book as well. I'll put those in the show notes. But they're for adults, and I wouldn't in good conscience have a middle schooler read some of the stuff that's going on in those stories. So I would love to see that. So get on that guys, right? Not like you have anything else to do.

But this episode is gonna be about more than books. Ginger and Mike are longtime advocates and hearing them talk about low blood sugars was really eye opening to me, I learned an awful lot even after all of these years. I think adults with type one are going to really enjoy hearing them talk about their experiences. And parents, we cannot learn enough about listening to our children to adults with type one about what they need from us and want from us and how we can help support them. And even though Benny is more independent every single day, I still need to learn a lot about backing off helping and supporting and not smothering. So this was a really good discussion for that.

Okay, we'll get to Ginger and Mike in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen. And this is exactly what we're talking about today. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke Hypopen comes in. Gvoke is the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it you pull off the red cap and push the yellow and onto beer skin and hold it for five seconds. That's it, find out more go to Diabetes, Connections comm and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon dot com slash risk.

 

My guests this week are Ginger Vieira and Mike Lawson Ginger  has lived with type 1 diabetes and celiac since 1999. She was diagnosed with fibromyalgia in 2014. She is the author of five books. We have talked I heard before on the show about some of those books, especially pregnancy with type 1 diabetes. I will link up tons of information about Ginger and those other books so you can check them out. She has two little girls, they did a read along on YouTube. But with this book, I will link that up as well. You've probably seen Ginger jumping rope on Facebook or Instagram. She is very active. She's I mean, she's certified in coaching, personal training and yoga. Mike Lawson was Misdiagnosed with Type two when he was 20. It took more than a year for him to get the right diagnosis. He had previously worked with diabetes hands Foundation, that's where I first met him years ago, he now works for a theatre production company in San Francisco and with the insulin for all movement, and Mike is the author of another book called Open up your bag. We've talked him on the show about that as well. I'll link up all of his stuff. And I will also include diabetes doodles, which Mike talks about here, Ginger, and Mike, thank you so much for joining me this book is I was gonna say just adorable. But it's so much more than that. And I can't wait to talk about it. Thanks for being here.

 

Ginger Vieira  6:02

Thanks for having us.

 

Mike Lawson  6:03

Yeah, nice to see you.

 

Stacey Simms  6:05

A little bit later on. I want to talk more about the substance here. It's always so helpful to get insight into how things feel so I can help my son more. But let's start and Ginger, I’ll ask you, how did you all come up with the idea for this book?

 

Ginger Vieira  6:20

You know, it came together with a few things that just kind of were wonderful coincidences, Mike had just illustrated and wrote the book, open up your bag, which is on the shelf behind him in the video. And at the same time, on the other side of the country, I was reading children's books to my kids who don't have type one, thinking about the time when I've had lunch with a bunch of kindergarteners who had type one, and how incredible it is that at that age, they have to count carbs and take insulin and prick their fingers and have all these gadgets in their body. You know, I'm 35. And I can't stand wearing a CGM anymore. It's like, and to be that little and deal with the burdens that come with this. And then I know as a mother, right, like trying to get my three year old potty train or even when they are potty trained, being like, do you need to go to the bathroom? They're like, no. And then 10 minutes later, they're like rushing to the bathroom because they can't you know, and to listen to your body is a skill that you build and detecting the symptoms of a low is a skill and a degree of self awareness. That is a lot to ask of a little kid. Yeah, that's a long answer to question.

 

Stacey Simms  7:31

No, it's a great one. I do have follow up, though. You were having lunch with kindergarteners with type one?

 

Ginger Vieira  7:36

This is a long time ago. But it really stuck with me that I was invited to meet a bunch of the kids in the town where I grew up who have type one. And low blood sugars are terrifying. And so it's I'm even more aware of what I witnessed now that I have little children. I have a three and a six year old. And to imagine them having to do what I watched these five year olds doing. I was diagnosed with 13. Right and it sucks at any age. And like you came on and talk to us a while ago about open up your bag about that book

 

Stacey Simms  8:04

that ginger, which is great. I don't know if you were surprised. I was not because the you know, the the diabetes community of parents that need something like that is so responsive when there is something good. It seems like you're a little bit overwhelmed by the response that you got to that. Can you talk a little bit before we talk about this book about what's happened since

 

Mike Lawson  8:21

well, open up your bag did get some great kind of following from folks who pretty much the general sort of comment that I received was like, we just needed something there just wasn't enough, maybe there are a couple of their books, and they're all every kind of type one book that I've read is great. So I'm not here to kind of knock any of the other stuff that's out there. But there's just not enough, especially if you're kind of breeding it every night before bed, like it'd be nice to have a second title to read and open up your bag. And when I go low, both of them are just kind of their happy books with Ginger just said kind of sounds a little bit scary. Like kids can't recognize these symptoms and stuff like that kind of is a scary topic. But the book that Ginger wrote really does it in a very light hearted way. Let's kind of just talk about the symptoms. And let's talk about how we're going to kind of treat them and it's not scary, it's happy and jovial and it's fun and open up your bag as well as kind of like, let's just kind of collect our diabetes supplies and kind of make a little singsong about them. That's kind of been the general reception, and it's been great.

 

Stacey Simms  9:28

So let's back up and talk about your experiences you both live with type one. It's been a while it may surprise some people I doubt it because we have a really well educated and fabulous audience. But it may surprise some people to hear that they still have low blood sugars, like, still? And  I say that with humor, right? We're not judging. This is not something that goes away. Mike is showing his little supplies nearby. But I'm curious if there was as you were writing this book and ginger, let's start with you, as you were writing this, what about your own personal experiences that kind of been formed, what went into it?

 

Ginger Vieira  10:01

I mean, a big part of what so there's several characters in the book and everybody except mom, cat has type 1 diabetes, and they all are sharing different symptoms that they feel when they're low. And that really for me, I, you know, I know that when I'm low and I'm on a treadmill, one of the first symptoms I feel is that the front of my eyes going numb, versus when I'm in bed, and I'm waking up in the middle of the night, and I'm low. The first symptom I feel is that I wake up and I like, Why the heck am I awake at 3am? You know, and it's not till I sit up there, I'm like, whoa, I'm low. And so, you know, I figured that out when I was like, 22. So to ask for little children to like, be that self aware is, it's an idea that we're really trying to offer them because the same way that you can encourage a little girl to know that she's smart and beautiful, is through the messaging you send, right. So we're trying to help send the message that you do have the ability to feel your lows coming on and send them you know,

 

Stacey Simms  11:03

let's let's kind of deviate from the book and kind of go further into that, because I feel like, again, and I have had occasional low blood sugars. I mean, once a year, basically, and I've shared this on the podcast, just recently, I had a low while I was taping the podcast, I went down and measured my blood sugar was 46. So it was a real low, but I'm fine. And it happens so infrequently. But I got it. I mean, I'm fine. Ginger made a mom face. But you know, I have talked to my doctor about it, I have to eat well, and be smart, you know, but things are gonna happen. And I'm not always smart. And that's okay, that's being a human being. So I just have to be prepared. But it did give me some incredible insight into just how to me how scary it was to be low, and how disorienting. And the example I gave was, there were two things that happened. One was I really wanted juice, but my husband was hanging around and he was like, What do you want to drink? And I said milk, and I hate milk. And I drank a glass of milk. It was like, and he didn't question me and I sit him later, he said, My mouth said what my brain was not thinking it was very strange. And then for the next hour, I was so hungry. I was just really, really hungry. And Benny, of course was I told you know, you believe me. So to me, it wasn't frightening because it was well controlled. I was here it was not a big deal. But it was very eye opening. So I say all that to and Mike, let me start with you, would you mind just kind of sharing what it feels like for you. And I know it's not the same all the time. But what is a low blood sugar kind of like for you.

 

Mike Lawson  12:30

It's funny, you use the word disorienting. And that's what I would use as well. Especially recently, I've noticed a lot of my lows are kind of I'm My mouth is getting detached from my brain. And I'll be kind of, you know, a few minutes into a story about I don't know, some documentary I watched and like, why am I telling this story right now. Like, I'm just kind of rambling off details and like, my thoughts aren't necessarily connecting with kind of a point. So I kind of get rambley in gingers in the book pointed out mad. And it wasn't really until I read this picture book that I started kind of analyzing that. And I do get a little bit angry a little bit sassier. And my tongue gets a little bit sharper. So that's something that I'm noticing and trying to kind of communicate with the loved ones around me to sort of say like, Hey, this is a symptom and not necessarily to explain it away Why I can be a jerk. But to kind of like say like, Hey, if you're kind of noticing this, and you know, we haven't eaten in a while, or we just got back from a hike. Like, that could be why and let's figure out what I need to do after that. So I feel like angry and angry is a new one that I'm learning to sort of analyze, but disassociated and kind of dizzy and rambley. Am I low right now?

 

Stacey Simms  13:46

(laughs) or is that just being part of a podcast? A little rambling? Has it is, as you said, you're sort of recognizing that a little bit more now. But Has anything changed for you over the years of being diagnosed is significantly in terms of how you experience lows?

Right back to Mike answering that question in just a moment. But first Diabetes Connections is brought to you by Dario health. And one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running out of strips, do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all 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 Connections. Find out more go to my dario.com forward slash diabetes dash connections. Now back to Mike talking about what has kind of changed for him over the years when it comes to lows

 

Mike Lawson 15:03

What's changed for me is I've learned to sort of treat them and not ignore them. And I don't think that this is uncommon. I had this problem where I know a low is happening, I could feel it and sort of in my head, I'm like, well, maybe this one will rebound on its own or will take care of itself. And I'll kind of just sit and wait until it's like an emergency. And that usually then leads to me eating anything I can get my hands on which then we you know, like, it's a cycle of kind of. So I've been trying to learn, like, if you feel that symptom, like let's take care of it right now. And that's made them a little less drastic and easier to recover from

 

 

Ginger Vieira  15:44

I mean, a couple things came to mind when you asked that. One is that I actually I think being a parent has made my lows feel more like an emergency, you know, because it's like, there's nothing less fun than being a playground and being 45, 45 blood sugar. like being in the middle of Costco with both my kids and then having a really bad low because of a miss time or miss guess, and insulin like that. It's just miserable. So I feel like I'm on much more alert for oncoming lows, because I hate having them as a parent. So I've also lately if I wake up a little bit low, like even 50, 55, I will let dawn phenomenon correct my low, because I usually need a unit of insulin as soon as I wake up to prevent me from rising 100 points. So if I wake up low, I've actually experimented with seeing if dawn phenomenon will fix it, and it does. And then I still end up needing a unit of insulin eventually to prevent a further rise. But it's been an interesting, obviously, I'm not like sweating and shaking with that kind of low. It's like a very steady just sitting, you know, at 55 or something.

 

Stacey Simms  17:06

Right? That's something you have to be a bit experienced to have a backup plan.

 

Ginger Vieira  17:10

And I'm not getting in the car, you know, it's like, right,

 

Stacey Simms  17:13

but we've done that over the years. Yeah, I mean, you know, once you're a while in I think most people, I don't want to say experiment on themselves. But that's kind of what it is. And we've done that, you know, we've kind of let it ride and I'm right here. But let's learn. What do you think you would like you know, spouse's parents, other people around the person with diabetes who get diabetes as much as we can. But what do you want us to know about low blood sugars?

 

Ginger Vieira  17:38

Even after it's come back up to a normal level you feel terrible for I mean, you mentioned feeling hungry for an hour, you feel terrible for a few hours. Other it's like a headache, or you're just exhausted or like, I'm just constantly wanting to eat everything in sight, even though your blood sugar's now 120.

 

Mike Lawson  17:56

I think that's a good one. I also would want to communicate kind of like the urgency that I feel, I don't act like myself for a few minutes, because I'm kind of focused on just one thing. And that's bringing this number up. And not that that excuses me, like I said before, to be a jerk to everyone around me. But it's sort of like, get out of the way for a minute. But don't talk to me about why I'm low. Like that can happen later. Like, right now I need to just fix this. And that's all I can really think about.

 

Stacey Simms  18:25

That's interesting, because I do think that many times I have said, while we're treating, like what happened. Let's analyze the situation and learn from this right?

 

Ginger Vieira  18:35

I'll tell you what happened. my pancreas screwed me over. And that's all we need to talk about on that subject ever again. Yeah.

 

Mike Lawson  18:44

It really is just one extra drop, you know, like, can send you over.

 

Ginger Vieira  18:48

It's so easy to go low. That's such a great point. Like I hate when doctors are like, Oh, you had a low blood sugar. Because Mike is heard me talk so much about apples. But I eat an apple once a day, pretty much almost every day. And they're all different sizes. And if you get honey crisp one day or Fuji the other day, they're different sweetnesses to the little book that you got in 1994 that said, All apples are 15 grams of carbs is lying to you. And it's so easy to take one unit more than you thought you needed for a meal.

 

Stacey Simms  19:20

We learned that very early on with bananas. Right? Because they're different sizes and ripeness.

 

Ginger Vieira  19:25

Yeah, that’s a whole other thing, right?  you cannot estimate that accurately.

 

Stacey Simms  19:30

I used to try to really figure out I read and I'm so sorry. I read this very early on. A parent said something somewhere that there is never not a reason. You know, you can always figure out what happened. And that's probably true. If you're like a molecular biologist or you know something you know you have

 

Ginger Vieira  19:48

you might be able to always figure out what caused it but that doesn't mean you can control or prevent it.

 

Stacey Simms  19:54

Exactly. And to my mind, it just seemed like a complete waste of time to spend the energy. The little Energy I had as a parent of toddlers to analyze how ripe was that banana. It was more like, okay, we know this could happen. So let's be prepared.

 

Ginger Vieira  20:09

Yeah. Take a picture of it. Wait till the next batch of bananas looks as Brown is the one you know, I'm

 

Stacey Simms  20:14

not even that good. I'm just like, I think it was this right now. Yeah.

 

Unknown Speaker  20:17

Yeah.

 

Stacey Simms  20:18

So what do you What's your go to for treating Lowe's. Mike, you showed us a bag of I think what was that jelly beans or something. But what's your go to

 

Mike Lawson 20:25

jellybeans are new for me. Ginger has helped me in so many ways, man, this is 100% kind of hearing her talk about lows. We've done you know a few different talks and stuff after this book. So I've been picking up a lot of tips from her. So I'm trying to sort of get something that's easy to dose. Because my low treats are not treats. It's not something that I should be kind of looking forward to or enjoying. It's something that I should sort of be able to easily count when I'm in that low brain moment. I also do like those pouches of applesauce a lot because those are, you know, 10 grams of carbs. And usually that's kind of just what I need. And then I kind of can sit on my hands for the rest of the time while my brain wants to eat anything else that can get its hands on. So apple juice and apple sauce packets. I don't get a big thing of juice and pour it out because I'm not good at counting when I'm low. something easy is important to me.

 

Ginger Vieira  21:16

Yeah, I would I echo that bottle of juice like the big bottle. No way. You can go up a whole bottle of juice if your blood sugar's 45. In a second. I personally tried to develop like some little rules for myself that I've put into books. That's what Mike is kind of talking about two I think and it's to prevent overtreating lows right and to treat a low in a way that helps it come up the fastest. So I like to use things like the jelly beans jelly if you get Jelly Belly brand. They're one gram of carb each so you know you can treat a mild low with like eight grams of carbs, gummy lifesavers, I really like because they don't freeze and they don't rot. So I keep them in the car. Each gummy lifesaver has four grams of carbs. I think Skittles do freeze. It's very hard to chew frozen Skittle, but they also have one gram of carbs. Because you're gonna keep stuff in your car.

 

Stacey Simms  22:10

And we're in the south, so we can't keep stuff that'll melt. We can't keep candy in the car.

Yeah, it was funny. I was trying to think of frozen Skittles, what you were talking about that I realized that most?

 

Ginger Vieira  22:16

Yeah, yeah, that's keeping stuff in the car. And I walked my dog a lot. So I wouldn't be able to treat like not that I would have four loaves in the dog walk, but I want to be able to go a week and not worry about resupplying the low food. And so those little things that pet that like jelly beans, you can carry 100 jelly beans so easily in your pocket. Vinny has changed a lot over the years. He's always and still does use those 15 carb juice boxes. Because it's easy. It's a little bit overtreating, sometimes, but not by a lot. And it's not the drinking down the whole thing.

 

Stacey Simms  22:48

I don't care as long as he's treating, and he's comfortable that that's fine. But when he started driving, when he got his permit, we started talking about things to leave in the car. And we discussed it for about three seconds, because I had a bunch of suggestions that I didn't actually get to, because he said it's just gonna be tabs, just give me tabs. I was like you've hated glucose tabs, you've never He's like, it's perfect. They won't melt, they won't freeze. I can always get to them, like just buy me a big honkin thing and we'll stick it in the glove compartment. Yeah, and he's had to treat a couple times, and it's been perfect. So all of my great suggestions went to the curb. Well, you

 

Ginger Vieira  23:19

know, like, and there's such personal I had a really bad stomach virus, stomach bug when I was pregnant, and I regurgitated glucose tabs. Alright, so I've never touched one since then I really never will. And like, I joke that I would sooner die than have to eat a banana to treat a low because I hate bananas. I hate to write, but there's like certain things that you just don't work for you personally, you know, and you have to figure that out.

 

Stacey Simms  23:47

Yeah. And you know, circumstances change and walking the dog driving the car, that kind of stuff. When you decide to write a book like this. I mean, both of you have written other books. Ginger, I know you've actually talked about how rewarding it has been, you know, to share this kind of information. Where do you start when you're thinking about kids? I just looking at it, I noticed a couple of things. And I don't want to like say too much. But I will say all the kids are not kids. They're animals. Right? Is that a drawing Quirk? Is that a choice you made? Is it something you want the kids to be able to see themselves no matter what they look like? I'm curious like how you came up with that?

 

Mike Lawson  24:24

Yeah, I think I love children's books. I've always loved them. I'm kind of loved them for maybe a little too long. Even at a break into my later childhood. I was still checking out kids books and trying to redraw them. I was a big fan of if you give a mouse a cookie, and I would draw like fanfiction, where it kind of like extended the story. I just was really into it. And almost all of my favorites were the characters were animals. They weren't children. And so I kind of just thought that's how you do a kid's book. But if you do think about it, like you take a look at this book when I go low, and all of the characters are kind of relatable to you, because none of them are just a little boy or a little girl with blond hair, or, you know what I mean, they they're kind of everything. So you could kind of take a look at the group of birds and identify in that you could take a look at the pig and say, like, sometimes I'm a little piggy, you know, like, you've kind of relate to all of the characters at different times. So I like that a lot. And I think what's funny is when Ginger wrote this, she sent it to me, and we kind of had her initial conversations, and they were all animals when she wrote it. It wasn't like a conversation where I had to convince her that that was a good idea. She didn't. She knew it was

 

Ginger Vieira  25:37

they were all underwater animals, because I was at first illustrate it myself. And thank goodness, I found that Mike was ready for a project because he did 100,000 times better.

 

Stacey Simms  25:49

Are there things that we should be looking out for in the backgrounds are those streets that are familiar to either one of you, I don't want to give too much away. But I was curious.

 

Mike Lawson 26:00

Yeah, so the background photos are just kind of stuff that's around me here in Oakland and San Francisco, there's a few stock images as well. But you'll notice there's bushrod Park, which is just down the street from me mosswood Park is around the other corner. So they're kind of just like photos from out and about.

 

Ginger Vieira  26:19

So if you want to stalk Mike, then you've just been given like four tips on how to find him. So one thing that it's really not just a message about lows, we've really tried to incorporate a few messages for kids throughout the book where, obviously there's a lot of talking about lows, but there's also one that they're not the only one in town with type 1 diabetes. I've been at counselor at diabetes camp for in the winter, as a little weekend camp for teenagers for years. And you can just see like, the minute they walk in the room is like, oh, everybody here is just like me, taking a shot at lunch is no big deal anymore. And that that burden becomes so much lighter. So finding I've really any parent that's listening, like please send your kid out to diabetes camp, no matter how much they say, I absolutely do not want to go it will help them in more ways than like you can measure. And also several points in the book with between characters, they talk about how brave they have to be to deal with type one. And one thing that I hate to witness online is when a parent is talking about their child's type one with pity, you know, feeling bad for the kid because I think there's nothing more poisonous to confidence and courage and perseverance than pity. And instead of you know, you still want to acknowledge how hard it is. We're not you don't want to dismiss how hard it is. But instead of pity instill them with this sense of like, look what I deal with every day. I'm awesome. You know, this, like sense of confidence and impressiveness, you know, and so there's that message as well, like you are really brave for dealing with this every day.

 

Stacey Simms  27:58

All right, I hate this question as an author, but I'm going to ask you guys anyway, because it's always fun. So books been out since January? What kind of reaction Have you received? Has it been different from your other books? And now I can ask you both of this, you know, but I can ask you both this question. Mike, you're nodding, was it different from open up your bag?

 

Mike Lawson  28:15

Very similar, the receptions? Great, you know, seeing parents and children holding the book and talking about conversations that they've had thanks to the book is great. We've heard from a couple of parents that they appreciated the conversation that was created because it wasn't based around fear. It was sort of just a nice conversation about something that's very serious, but the conversation didn't have to be serious and scary. So that's great to see. Seeing people holding the book and kind of using it as a tool with their children has been very rewarding. Ginger, I'm sure it's a little different than some of your other books.

 

Ginger Vieira  28:52

Oh, Mike did we did get the question of like, how could a cat and mouse possibly exist as friends in the same universe?

 

Mike Lawson  29:02

Our harshest critic, and she was four.

 

Stacey Simms  29:05

excuse me. Yeah, that's awesome.

 

Ginger Vieira  29:09

We're trying to forge new communities, you know. I mean, I think with any book, it's, it's the same feeling of like, it doesn't matter if it's, I know, it's always rewarding because you get that, that this affected me in a positive way. And it made living with type 1 diabetes a little easier today or this week, or ever. It doesn't matter what it is. It's, it's worth it.

 

Stacey Simms  29:35

One of the unfortunate trends I've noticed really just in the last five to eight years, among parents is Listen, you always want to respect lows, right? You don't want to ignore them. You want to treat you want to learn about them. But there seems to be I don't know if it's a CGM thing or a social media thing. I see more and more parents who are afraid to let their children do things away from the house, sports, all that stuff because Cause of low blood sugar. Are you kind of hoping that even though this is a book aimed at the kids, that the parents might kind of understand a little bit more about a Ginger you're making, you're kind of making me nervous with your face there.

 

Ginger Vieira  30:11

I mean, I just technology’s… I feel like CGM has really changed how people, parent children with type one. And it's become much in some ways I've witnessed online. There's this like ultra-micromanagement of trying to get this flatline on the CGM and, like ultra-micromanaging their diet to the point that I think there's a whole new batch of kids that are going to be struggling with a, I never had anybody micromanage my diet as a 13 year old with type one. And I still had to like work through my relationship with food in my early 20s, because of diabetes. And so now you have like five year olds that are being put on ketogenic diets, and it's like, this isn't going to like succeed long term, I don't care how willing they look like they're into it right now. It's going to miss shape their relationship with food, and it's not necessary in order to thrive with type one. So yeah, I think cgms have, obviously they've provided this ultra safety, but it also provides like this ultra level of fear, I

 

Stacey Simms  31:14

think, I just feel like we need to find better ways to use the technology to thrive and let our kids you know, thrive with it.

 

Mike Lawson  31:21

The book is called when I go low, not if I go low, like we know you're gonna go low, it's if you're doing insulin it's gonna happen and kind of being afraid of them. And acting like that's a failure to go low is going to kind of set you up for some really heavy shame and kind of feelings that you don't necessarily need to have. I don't know, it's a complicated story. And I understand why you might fear lows, but personally, my fear of low blood sugar has actually led to my highest day one sees because then I'm under treating and or, you know, under injecting insulin and sort of like living high, which isn't good for me either. So you kind of have to figure out how to walk as close to the line as possible. And sometimes you're gonna dip below the line, and sometimes you're gonna be above the line. That's the game.

 

Ginger Vieira  32:08

And there's so much pressure these days to get an agency that's like in the low five than the high fours because of ketogenic diets. And now an agency of 6.1 is like, Oh, that's no good. And I see it in parenting communities. And I feel really bad for the kids were like, you can live an extremely long, very healthy complication, free life with an A1C in the sixes. This is not, you know, like, you don't need to put your kid through taking away joys of being a kid. Yeah, to get anyone see. That's

 

Stacey Simms  32:40

crazy. It's complicated. And I really hope that books like this help, because it's the parent who's reading it, the kid can learn a lot. But sometimes the parent I know, for me, it's always helpful when I learned from people who actually live with type one.

 

Ginger Vieira  32:54

I do think like, as someone who's a parent, and someone who has type one, but my kids don't have it. I do think that type one is a lot scarier through a parent's eyes than it is living with it. It sucks living with it, I would give it up in a heartbeat, right? But I think there's the fear is bigger when it's coming through the parents eyes and the room for worry and pity. And I don't want my kids to have to deal with type one, even though I know Look, my life is fine, great, right? Like I'm alive doing it. But I still dread like if they were to ever develop type one.

 

Stacey Simms  33:30

Right? And not to minimize it because I 100% agree with what you're saying. But it's parenting is like that with everything right? Your kid gets the flu or is throwing up and you're like, I wish it were me. I feel so bad for them. You know, it's a totally different perspective than going out in the world. Like, I

 

Ginger Vieira  33:43

hope you don't get in some weird accident. I mean, is it like just learning to walk? I was like, Can I put helmets on these kids are? pediatricians like that's not necessary. But there are sharp and I'm not really a worrywart like that but like suddenly you just Yeah.

 

Stacey Simms  34:00

Alright, before we let you go silly question. Are any of the names in the book named after people or anything that you want to share? They're just names we love. Yeah,

 

Ginger Vieira  34:09

we're working on a second one. Who's Mike?

 

Unknown Speaker  34:13

Like, how much should we reveal?

 

Mike Lawson  34:15

You do it?

 

Stacey Simms  34:18

Is it the same topic?

 

Mike Lawson  34:19

No,

 

Ginger Vieira  34:20

not the same topic. It's called Ain’t Gonna Hide My T1D. That's all we're gonna tell. All right.

 

Mike Lawson 34:26

We do have a website, which is diabetes, doodles, calm, free, downloadable supplemental worksheets, some word searches and coloring pages that go with along with the book. You can also find links to by when I go low and open up your bag, their

 

Stacey Simms  34:41

web series, have you heard from siblings? I meant to ask that have you heard from siblings that read this, like,

 

Ginger Vieira  34:45

you know, we've heard from actually parents who have type one, a dad ordered it to read to his kids so they would understand his type one better. And I read it with my kids. We have a read aloud on my YouTube and they know I have type 1 diabetes and they Now I believe mommy alone is low. So it's definitely I think grandma's could benefit from it. I think my aunt could benefit from reading it, you know, she thinks, Oh, we've had it so long. You take such good care of it. It's easy for you, you know, it's like, Nope, I still go low, just like the cat.

 

Stacey Simms  35:19

Well, thank you both so much for coming on and talking about this. I loved hearing the stories behind it and getting better perspective and keep us posted when the next one's coming out. That's exciting. Thank you.

 

Ginger Vieira  35:29

Thanks for having us.

 

Announcer  35:35

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  35:41

More information about everything we talked about, just go to Diabetes connections.com, there's an episode transcription, you can go to the homepage and learn lots more, and order the book as well. And if you do, please leave them an Amazon review. I love the book, I left them a review, you can read it on the Amazon homepage.

I just think that especially for younger children, a book like this is so helpful, because you can't expect I didn't say this during the interview. But I'll say if you're reading this book doesn't mean that your child is going to recognize lows. Right? I think that's one thing that I get asked a lot, especially when it comes to toddlers and children, frankly, under the age of seven, six or seven, how can my child can't recognize lows or when can I expect that to happen? And every kid is different. And your endocrinologist may have more information for you about this. But I think it's unrealistic to expect a three year old or even a five year old or sometimes a seven year old to really understand recognize and articulate that they're having a low blood sugar unless you have a child who is a preschooler and says, Mom, I think I'm having an ear infection, or I have a headache, perhaps I have a sinus infection. Kids don't think like that. They don't talk like that. They don't know what's going on. They don't even have the tools to articulate.

My daughter is a great example. My daughter Lea doesn't have diabetes. And when she was little, she had a series of, she would get chronic ear infections for over a year and a half, we finally did ear tubes, and she had cleared everything up. But she used to get an ear infection and she would punch us she would just get angry. She wouldn't even say my ear hurts. Or she wouldn't point her ear and say my ear hurts. We just knew something was going on. This is between the ages of probably two and almost four, because she would be mad at us. And I think with lows with little kids, it could be the same thing. You can talk to them more about how to recognize it. And a tool like this could probably help speed up the process. But that's the only thing I would caution about and Mike and Ginger aren't making any claims like that. It's just a question that I get asked quite often.

All right, tell me something good in just a moment. But first, Diabetes Connections is brought to you by Dexcom. So I was watching a movie with my husband the other night with my husband Slade and I got a Dexcom alert. Benny was upstairs in his room. And for some reason, it just took me back to the days when we basically had blood sugar checks on a timer. Do you remember this? Some of you people who have been around for a while, we would check doing a finger stick the same times every day at home and at school. And of course, whatever extra we needed to. It's amazing to think about how much our diabetes management has changed with Dexcom share and follow. I didn't stop the movie to get up and check him. I knew what was going on. I mean, I could decide whether to text him I could decide whether I needed to go up and help out using the share and follow ups have really helped us talk less about diabetes, which I never thought would happen with a teenager. Trust me He loves that part too. That's what's so great about the Dexcom system. I think for the caregiver or the spouse or the friend You know, you can help the person with diabetes manage in the way that works for their individual situation. Internet connectivity is required to access Dexcom follow separate follow up required Learn more at Dexcom comm slash compatibility.

In tell me something good. This week, I popped into the friends for life Orlando Facebook group to gather some good news stories. And this is that big conference that goes on in July. They have not yet decided whether they will be virtual or in person come this July. But children with diabetes the group behind friends for life is putting on a virtual conference this coming weekend. It's their spring conference, I will link up more so you can find out register. It's always a terrific time. And I find these virtual conferences a really great way to just connect. I go and I listen to presentations. But more than that I kind of hang out in the hallways and talk to other parents and say hi to my friends. It's been wonderful. So ask them for some Tell me something good.

And Laura Bilodeau who is the organizer, the Grand Poobah of all the friends for life stuff said Sam her son and Grace are planning to move back home house hunting in Detroit in the time of the pandemic. Oh my goodness, getting married in September. Life goes on. That is wonderful, Laura, such good news. I'm excited for you and your whole family. More wedding news, Erin shared I got a great report at the retina specialist No need to return for nine months. The next time I go I will be a Mrs.

So that's fabulous. Both good news things right a wedding and a great eye report. I have a retina specialist appointment coming up. I don't have diabetes, but I've had some issues. And that is such a tough eye exam. And I know many of you, as you'll listen are saying, Stacey, get over yourself. We have to do that all the time. I know I do, too. But I hate it so much. I'm such a baby. So good on you, Erin. Thanks for sharing that inspiring us to be brave at our retina specialist appointments.

Wendy says my first in person endocrinologist appointment was yesterday or a Wednesday was excellent. But I'm sharing this because Wendy also says she's been working nonstop scheduling appointments for COVID vaccines in New Jersey and Wendy, I assume that is for other people. And you've been helping out. And that is such fantastic work. It's unbelievable how complex this can be for people who are, you know, not used to using computers or using apps to schedule appointments. And I think we've been kind of lucky in North Carolina, that it's pretty simple here. Once your category opens. There's a lot more complex systems and other states that I've heard. So Wendy, thank you for doing that.

Janice shared I have type two diabetes, but unrelated, I just had my 10 year check for thyroid cancer levels were undetectable. Always great to hear. Janice, thank you for sharing that. Lots of people also shared really great agencies and checkups. And I'm thrilled for all of you for that. And I hope you are just as happy in your lives with diabetes as you are with those numbers. You know how I feel I don't generally share numbers and tell me something good. But I really am happy for all of you. I know the hard work it takes to get there. Well, I know as well as a mom of a person with type one can know, right? I don't know the day in and day out work that you really are doing on an individual basis. So friends for life Orlando group, thank you for sharing all of your good news. I very much appreciate it. And I'll see many of you had the spring conference this weekend.

I also want to share a little bit of good news about Benny: he has a job. I know Isn't he two years old still? Benny is now 16. He got his driver's license, and he has been really itching to get a job. He's got some projects he would like to spend some money on. And he just is an industrious kid. And you know, I think most 16-year-olds are ready to work. I certainly was when I was his age, and his dad was too. So we've been encouraging him. It's been very difficult, of course with COVID to find something safe. We've been mostly talking about like summertime jobs, but it happened pretty quickly and we got pretty lucky. He got a job at a local grocery store chain, just as North Carolina opened up to vaccines for grocery store workers. So the timing worked out really well. We were able to get him his vaccine. He just got the first Pfizer shot because he is 16 you can only get the Pfizer shot and he will start training and we are off to the races. So I'm really excited. I'm happy for him.

I know that as soon as COVID is really over around here. I'm never gonna see that kid. I used to say as soon as he gets his driver's license, I'm never gonna see him again. Because he was busy before he could drive. I mean, obviously before the pandemic, but his junior year of high school is this fall and I think between sports that his job and social life Holy cow, it's gonna be busy around here who maybe he'll drop by for meals. If you ever tell me something good story. I would love to hear it. Please send them to me Stacey at Diabetes connections.com. Or you can always post in the Facebook group. I love to hear them.

 

Hey, before I let you go, Happy St. Patrick's Day. Now I know we're not Irish or even close to it. And I know St. Patrick's Day, this year is a different kind of celebration, like everything else because of COVID. But I bring it up because it's actually my first date-aversary Yes, I made that up with my husband Slade and I don't know if I've ever told the story before in the show. So I'll tell it now. Slade and I met at a TV station in upstate New York shout out to Utica, very small city in upstate New York between Syracuse and Albany. I was hired at WUTR. In December of 1993. I had been working here there and everywhere in radio in Westchester County, just grabbing some part time jobs where I could and then I got hired full time to do this TV job in Utica. And then a little bit more than six months later, I got a new job at WKTV, the other TV station in Utica, and my commute got five seconds shorter because it wasn't even across the street. These two two TV stations were on top of a big hill, and they were the only thing on top of the hill. So it was like parking lot building personal building. And I was hired away by WKTV to be their main anchor. And I could talk about that forever. It was such a fun time and really fun memories.

But that's how I met Slade and we met pretty much in the summer of 1994. We were friends you know just like you’re friends with the people that you work with. But fast forward to March of 1995. Slade and I were in the St. Patrick's Day parade in Utica, because I don't know if this even happens anymore, but local TV stations will often be in the parades right the anchors will be in the truck and waving and that's it That was me like a dummy and Slade was driving and I was like hello People who I do I wait, what do you do? I mean, you feel like an idiot, you're not a celebrity. You're a local news anchor. So the whole time we were joking about it, you know, not insulting the people, they didn't come to see us, they came to see the other things in the parade, but just laughing at the ridiculousness of the situation. And we had a lot of fun. And that was in the morning. And in Utica, as in many cities, the St. Patrick's Day festivities tend to go throughout the day. So we kept running into each other at the bars and the parties and this that the other thing, and then a group of people said, Let's meet up for dinner. So I went home, you know, took a nap, took a much needed shower, went out to dinner. And as it had happened during the day, the group was kind of getting smaller and smaller and smaller. And then the dinner group said, Let's go to Turning Stone casino, which is a gambling establishment about 30 minutes away from you to go. So a bunch of us went and that group was smaller than the dinner group, but it was still pretty sizable and Slade & I had a blast.

I love to play cards. That's another story. And I really enjoy casinos. And it's probably a good thing that when we moved to North Carolina 20 years ago, the only casino was like two and a half hours away in the mountains and is nothing special. I think they've improved it. But we've decided not to go maybe until we retire. Because we went to Turning Stone a lot. But I'm getting ahead of myself. So by the time that evening started to wind down there were three of us left me Slade and another guy who bless his heart, I think was kind of oblivious of the whole situation. And finally, Slade said to me, do you want me to give you a ride home? And I was like, yeah, I'm done. And we went out to breakfast, at one in the morning, and then he dropped me off at my apartment. And when he dropped me off, he asked me out on a real date. That date by the way was I think was a week or two later and we saw BB King in Syracuse and we went to the dinosaur BBQ for dinner beforehand. That was a great date. But my first real date with Slade, as I counted is St. Patrick's Day. So long story their long way of saying, gosh, we've been together a long time. I feel pretty lucky about that. Happy St. Patrick's Day, everybody.

 

All right, next week we're going to be talking about provention. Oh, this really is exciting. If you stick around till now I'm glad because provention. This is the company behind Teplizamub. Does that sound familiar? That's the drug that TrialNet and other studies have shown can prevent the onset of type 1 diabetes for up to three years. So far, I say up to but it's a three year study so far. So in this we're gonna go in depth who had worked for what it's all about. It's in front of the FDA right now. So this is a really interesting and exciting prevention treatment, not in mice, but then people will talk about that next week. In the meantime, of course, we'll have a classic episode in just a couple of days of please stick around for that. Thanks, 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 a couple of days until then, be kind to yourself.

 

Benny  47:52

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

Mar 13, 2021

When they're out of options, people who use insulin are turning to Go Fund Me accounts and other online crowd-sourcing ways of raising funds. Mutual Aid Diabetes (MAD) is a new organization that hopes to help. Their mission is "to ensure every member of the diabetes community has access to adequate diabetes supplies, medications, sustainability resources via facilitated peer support."

This week Stacey spoke to Emily Miller, part of the leadership team at MAD to learn more.

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

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Episode Transcript:

Announcer :05

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:11

Welcome to a bonus episode of Diabetes Connections, where we aim to educate and inspire by sharing stories of connection with a focus on people who use insulin. I'm your host, Stacey Simms, my son was diagnosed with type one more than 14 years ago, just before he turned two. My husband lives with type two diabetes. I don't have any kind of diabetes, but I have a background in broadcasting. And that is how you get the podcast.

Today we're going to talk about something that is relatively new in the community trying to provide help for an all too common problem, lack of resources and supplies. It's called Mutual Aid Diabetes. I noticed this on Twitter late last year, I wanted to learn more about it. So I reached out. And Emily Miller, who is part of the leadership team at Mutual Aid Diabetes was kind enough to come on. Emily, I really appreciate you coming on and talking about this. Thanks for being here.

 

Emily Miller 1:01

Thanks for having me. I'm really excited to just kind of be able to share our story. Got it.

 

Stacey Simms  1:05

Before we talk about MAD or mutual aid diabetes. Can I ask a couple questions about you? You live with diabetes?

 

Emily Miller 1:14

Absolutely. I currently have type one diabetes. I was diagnosed when I was nine years old. And my dad actually was diagnosed with Type One Diabetes as well when he was about 19. So before I even had diabetes, it was like something that I even knew about, but I was diagnosed a little bit later in my childhood. And I have had it for going on about 19 years now. So I have to keep track via dates. But usually I don't think about it too hard. But yeah, about 19 years almost coming up in March.

 

Stacey Simms  1:45

How did you get involved with mutual aid diabetes? Were you part of the formation of it? Or did you get involved after it had already been around before I spotted it on Twitter?

 

Emily Miller1:53

Yeah. So I kind of came in, right before we had our like, first info session. Basically, during the pandemic, I had noticed a lot on Twitter and Instagram and like lots of different circles, basically, where mutual aid was popping up in different communities. So I live in West Philadelphia, you know, like Will Smith, all that kind of fun.

Stacey Simms

We all just sang it. (laughs)

Emily Miller

(laughs) It's no, it happens all the time. So I'm based in West Philadelphia. And there's a lot of mutual aid initiatives around here in terms of community fridges giving back in terms of financial mutual aid. And I love mutual aid, just because from the standpoint of asking a community what they need, and they give that answer back. And we're not turning it really into anything that's like part of the nonprofit industrial complex, or into charity or anything like that. So it's really a community meeting its own need. And as the pandemic really has gone on, a lot of diabetics on Twitter, although I'm sure some people know about the DOC, or the diabetes online community already, you know, the DOC really kind of started connecting a lot more people. And we've been doing this before pre pandemic stuff. But it was really a way for people to communicate and build that community that we don't necessarily have in our own lives. So I don't know how if your son experienced this at all, but when I was first diagnosed, my like pediatrician linked me up with another diabetic but other than her, I really didn't know any other diabetics, I just like, knew my dad. And so online spaces like Twitter and Reddit, lots of places like that have allowed for diabetics to kind of come together, domestically, internationally, to talk about these different issues that we're all facing. And so much of that is insulin pricing. At one point I had mentioned to one of my, you know, diabetic friends on Twitter that was like, Is there a fun that we can all just like dump money into and redistribute it? Because it seems like diabetics are just like sending the same $100 around to each other to fund these different things.

 

Stacey Simms  4:06

I just want to jump in Emily and stop because there's so much that has already gone by that I want to ask you a little bit more about. And this podcast audience is interesting in that it's very well educated, it is a little bit more well off than the general population. I don't say this as anything, then the demographics that I've researched over the years, and it is very well connected, as well. But I'm not sure that everybody who listens even knows what mutual aid is. And you talked about that. You have that in West Philadelphia, but it's not official, right? I mean, it is what it says it's people just helping each other. Right. This isn't a group or nonprofit called mutual aid. I just want to be clear about that.

 

Emily Miller4:46

Yeah. So the way that most mutual aid initiatives work is really outside of the scope of nonprofit status, or being an official organization. Different people will kind Have link up to mutual aid. And sometimes it gets formalized. Sometimes it doesn't, though. But I think a really good example of mutual aid that a lot of people know about is the Black Panthers. So back during the Civil Rights Movement, you know, they were doing a lot of community breakfasts and supply share, like helping people get medical aid, things of that nature. And that was really born out of the community of seeing the government didn't help us. And so we're going to help ourselves. And so I think for folks who are interested in learning a little bit more about mutual aid, it's basically reciprocal sharing of resources. So if one person can jump in and help this other person, they're going to do it. And then that way, if I ever need help, you know, I've kind of been able to prove that I can help out in some forms, and maybe someone's going to help me. And it's really knowing that like, no one dies today, or nobody is going to not get the care they need in order to survive. Because we are here to fill this gap that systems have created, essentially, we're going to fulfill the need, that systems that already exist have not been able to fulfill.

 

Stacey Simms  6:09

Yeah, and there's so much of this already going on in and I'll bring it in might sound silly, but what I know is the moms groups on Facebook and local groups, I run a local group in Charlotte of 800. Its parents, but it is mostly moms. And there is a week that goes by that someone isn't getting them in the car, driving insets sensors, quite often insulin, I've done it myself many, many times to other families and individuals. And I would assume that that's kind of mutual aid, even though we don't call it that.

 

Emily Miller6:38

I mean, that is that's mutual aid. You know, someone says, I need help, someone jumps in and says, I got that I'm going to help facilitate this for you. And I mean, same thing here, we, I think a lot of us in the community have been able to step up during this time of great need, especially when diabetics are at a higher risk for losing insurance during the pandemic losing financial support. It's just a time when more people need help. And so those requests are becoming more visible. And so now we have to kind of scale up what we're doing in order to make sure that people are getting their needs met. And I think that's something at the end of the day that I always think about is like how are we helping people? And how are we meeting those needs? Yeah.

 

Stacey Simms  7:22

Alright. So going back to what you were talking about. You said, and I think you're absolutely right on this, it seems like we're passing around the same $100 trying to help people mutually diabetes has been linking up to us from what I see, you know, GoFundMe and trying to find ways to get help to people who may not like I can't jump in my car and drive insulin to everybody. Tell me about the financial part of this. How is that working?

 

Emily Miller7:45

Yeah, so currently, the big goal really, for mutual aid diabetes, is to get that 501c3. So we can open up a bank account and really be that place where people can just like I said, dump funds in, and then start sending that out to people, we're in the process of obtaining that status. So while we're kind of working on our like 2.0 launch, which is coming up soon, we've created these other resources for people. So like peer to peer sharing methods, but like you were saying boosting GoFundMe is, but I think the problem of like the political side of mutual aid being like outside of the systems of governance, versus how we can help people in a way that doesn't put undue financial strain, or like running financial monetary donations out of someone's Venmo account, they kind of don't really sit together. So that's something that we've talked a lot about as like an organization of how do we get these two competing ideas and these two things that can both be true, and make sure we're honoring our community in the best way possible, while navigating, you know, the systems of, you know, the IRS and the nonprofit side of things, while also being true to our community. So, so much of the finances right now is like, if someone comes up and they have a little bit more financial resources, they're making that active choice to send that to someone's Go Fund Me, or something of that nature.

 

Stacey Simms  9:14

I have to be honest, you Emily, I'm a little confused and pardon my denseness on this, but I'm, I'm trying to figure out what is the conflict here? Is it an actual nonprofit organization in conflict with the mutual aid essence?

 

Emily Miller9:27

Yeah, I think that's a good way of putting it. So it's really about the whole core status of like, and I guess maybe that's not like the best sentence of like this, like the essence, like you were saying. So it's this essence of, we don't want to build a system that already exists that we know has not met our needs before. So a really wonderful, one of my favorite authors, Audre Lorde, said like the Masters tools will never dismantle the Masters house. I think that's a really good way of putting it of like if we just read create this system of how we get supplies to people how we get financial aid to people, we create this kind of dependence on like the mutual aid network. And just because unfortunately, the cost of insulin, the cost of supplies, all these things are so expensive. We are just by nature dealing with a higher amount of money than some other mutual aid initiatives are. So sometimes it's like, I've seen it in my local community fridges where if you have an extra $100, you can just like go to the store and buy extra gallons of milk, and I put it in the community fridge.

But for diabetes supplies and insulin, it's so much more complicated, because you have prescriptions, you have doctors, you have insurance, you have benefits managers, you have the different companies that kind of run all this stuff. And so you come into all sorts of different ways of interacting with these systems. But if we don't want to emulate those systems by just becoming another pawn in it, and it's kind of trying to combat the idea of being a radical organization that's going to be able to support other people, but also not leaving anyone out. Because we've decided not to pursue c3 status, or a method through which we can't essentially like get funds in so we can then pay someone's copay off or someone's deductible things of that nature, it's just, it's a lot more thinking about the theory of it than I ever would have expected. But it's something where I feel really grateful to be able to bring that to the MAD team that at the end of the day, if we ever need to take a step back. And we need to think about like what we're going for, we have that kind of like theoretical and that like personal experience basis of it, where we can fall back on that, as opposed to just like, we have a bank account or something like that. So we were really trying to put the person at the center of it rather than the community. Rather than just like the organization.

 

Stacey Simms  12:02

It's so complicated, as you said, with diabetes, because we, like my local group is a great example, we will help each other because we kind of know each other, and we trust each other even if we don't know someone Personally, I've seen them in the group for a couple of years. I know their child has diabetes, right? I know that this guy who lives in next town over is in between insurance and need some pods or whatever, you know, so we get the stuff that they need. It's different somehow, when, you know, we know there is a need, but I don't know if I should donate to this guy's Go Fund Me. Of course, I don't know if I should donate to this other thing. But then there have been so many groups have tried in the past, or have had the idea in the past, I should say of, well, let's just fundraise. And then where do we give it it is so complicated, because of all the prescriptions and I'm just really echoing what you said. But I guess what I'm leading to is the question of, are you then this is a big ask. So I I'm not expecting a big Yes. But are you then trying to use mutual aid diabetes, to spread the word of what needs to change in terms of legislation and insulin pricing and all that stuff? You've already mentioned some politics?

 

Emily Miller13:03

Yeah, I think that's a great question. Because the existence of a group like Mutual Aid Diabetes by nature of just being a mutual aid group, it already shows that there's that gap in the system, like we were talking about. And so different people in the diabetes community, sometimes we call it like the diabetes, grassroots, essentially, you know, we know what skills we have. And so we can connect with each other, we can organize and we can talk about these different issues. Some people skill sets may just be better suited for mutual aid, some people might be a little bit better suited for like lobbying or things like that. But because we have these relationships to each other, that can inform how we use that information, to do things like lobbying, if we need to, or talking to elected officials, things of that nature. So it may not necessarily be like MAD’s wheelhouse, per se, to do some of that information. But just the fact that we exist as an organization brings awareness to that fact that the work that we do is because the way that insulin is priced in the way that supplies work is unsustainable for most people right now. And I think that's, it's a big, it's a big question of how do we link those things.

But I think it is really important to talk about how the existence of something like MAD or different organizations and different organizations like the JDRF, or the ADA, or beyond type one, all these different things, what are their purposes within the diabetes community, because some of those organizations like JDRF and ADA and beyond type one, they talk about wanting to help people with getting assistance or making insulin affordable or making the best choices for each person's life, but by taking like insulin money and partnering with Big Pharma kind of defeats some of that purpose. So we're really here to kind of take that stance of like, we don't do these things, we don't take money we are buying for the community, we're trying to be inclusive of the whole community, all of these kinds of principles that we took a lot of time to think about. And just make sure that we are taking a stance that it can be done. And that as we kind of move along, you're helping people that we can meet the needs of the people who are essentially forgotten a lot of the time.

And it breaks my heart that a lot of the time when we see these GoFundMe is, sometimes they have no money going to them, because people can't vet them. Whereas when I put up my GoFundMe literally a month ago to help crowd fund for health insurance costs, it got funded within six hours. And it's because I'm a vetted member of the community. But I take any of that surplus, I'm able to give that back to those people who have like $0 on their GoFundMe accounts, and I get DMS, from people all the time on Twitter of like, Hey, can you just boost this and it's the easiest thing to do. And by me boosting that, someone's able to get a little bit more visibility. And I think that's the great thing about Matt is that we have a little bit more visibility to bring that verification kind of in there. While also not being gatekeepers, we don't ask for proof of anything, but we do our best to make sure when we're meeting with people where we're trying to facilitate that need, we can talk to that person one on one and say like, what is the need here? How can we address this crisis? Are we doing crisis management? are we helping someone out to kind of feel more comfortable and asking for help these kinds of things. And the great thing about MAD, is that we just have so many wonderful people working in our community, you know, volunteers for MAD, a lot of them have so many different backgrounds, and so many different skills. So we have folks like medical social workers, people who work in ERs, but also people who just have a lot of experience in social media, or looking at like air tables or something like that. So we have all this different experience that we can kind of put together to make the most, I guess, facilitate as streamlined as possible, the aid that needs to be given to people.

 

Stacey Simms  17:16

What kind of response Have you all received Since launching on social media late last year?

 

Emily Miller17:21

Honestly, it's it's very surprising, I guess, for me, it's surprising because, you know, the communities that I come from, they tend to be really small and kind of insular. Sorry, I know where this is going. Yeah. And just to see the kind of outreach like, we had, I think 150 person limit on the zoom call that we needed, like for the intro session, and we maxed out and then so many people were like, how can I get this recording? How can we get this up there. And we're all behind the scenes, like typing to each other, like, have we finished the like closed captioning on this. So it's as accessible to as many people as possible, we just hit 1000 followers on Instagram the other day. And it just makes me really proud to see that something like mutual aid, which can sometimes be seen as this really radical sometimes divisive thing is being received and being really, you know, shouted out in the community. So it's really cool to see that. And just knowing that we've had a pretty amazing impact so far, just in terms of the people that we're reaching, and making sure that it is inclusive, and it is by the community, like I said earlier, because you know, it's Black History Month right now, I don't know when this is gonna go up here, being able to talk about the roots of mutual aid in black liberation, things of that nature. And to kind of connect with the community, in those respects, just shows that people are all while one, it can be a sometimes divisive thing. It's also growing a greater community. It's welcoming people in in a way that sometimes we don't always see. And sometimes we don't always think about when we think about diabetes. Yeah.

 

Stacey Simms  18:59

And I think telling the stories over and over again, really helps because you never know who you're going to reach. And I tell the story all the time. We are so fortunate, you know, we've always had great health insurance, I never had to give my son supply the second thought until the day that we needed more insulin than we had. And I went I'm like, Oh, I'm just in between, I'm sure I can get another vial and it would have been $300. And I was stunned. I mean, you know, everybody listening knows how but I had never This was several years ago, I had never encountered this. And my pharmacist was able to put through like a vacation or emergency thing or whatever. But that was the turning point for me. And I'm almost embarrassed to admit that it took that happening to me, for me to understand one of the big problems and then of course hosting this podcast and meeting a lot more people that really opened my eyes. But I do think it can take that moment of Holy crap, this isn't somebody else, and then seeing it happen over and over again and reading the studies of one in four people rationing insulin, which is probably more now because of the the health insurance crises we have going on in this country. So I'll get off my soapbox. But I want to ask you before and I'm going to ask you what you will need and want from my listeners. But Emily, I'm going to ask you, what do you do? What's your profession or your expertise or your interest outside of that.

 

Emily Miller20:14

So I am actually currently in, I'm a graduate student, getting my master's in clinical mental health counseling. And my, hopefully, my focus, once I graduate, is going to be on working in a trauma informed way with folks with diabetes, because so much of our community has had these experiences that are just incredibly traumatizing. So whether it's running out of insulin and not knowing where your dose comes in, or having a doctor tell you that, like, You're stupid, because you don't know how to give the right amount of insulin when your supplies aren't coming through or something like that. There's just so much stigma. And there's so much trauma involved in trying to manage an unrelenting disease like diabetes. So my goal once I, you know, finish my clinical practice, or practicum, and internship, all that kind of good stuff is to be a mental health counselor, for folks with diabetes and other chronic illnesses. Because I think that integration of mental health care and physical health care is just so important. And prior to that I had I have experience in social work. So that's my love meeting with people.

And just like you were talking about those stories really are at the core of what connects all of us together. So when we can kind of sit down and talk about what did these stories tell us about ourselves? And how does that impact how we think about what's going on for us, whether that's diabetes, whether that's depression, anxiety, or you know, bipolar disorder, or Crohn's disease, anything like that, that narrative, as well as how we think about accepting that were the moral values we placed on these things can really have an impact on our mental health in day to day basis. So that's me. And it's funny, because I always joke that my classmates get radicalized on insulin pricing, just by being in classes with me. So I'm sitting there, and someone told me someone's talking about with managed care. And I raise my hand and I'm like, Can we like think about what it means to not have to think about insurance? And people are like, Oh, no, there, Emily goes again. Cuz all I talk about is like health care being a mess, I just wanting to change that. So that's me, outside of MAD, but I think it, it goes to show that you can sit down, and you can think about what your skills are and how they help connect people to other folks. And so I can take my skills in mental health and social work and apply that to mad by talking with people on a day to day basis about like, how can we get you help that makes it so that you have a more sustainable access to insulin over the course of the long term and things of that nature?

 

Stacey Simms  23:01

So what can people listening do? What you know, what kind of need can they feel for you? If they're interested in learning more? What should they be thinking about?

 

Emily Miller23:09

I think the best thing is that folks can do right now is just to kind of keep up with us as we're preparing to do our like launch 2.0, essentially, you know, we're working on making sure all of our systems for peer to peer supply sharing or peer to peer funds are as streamlined and not wonky as possible, I guess. And so just follow us on different social media. For right now. You know, we're pretty much Mutual Aid Betes Mutual Aid Diabetes on many different platforms on Twitter, Instagram, things like that. So just follow us for right now. And you can always if you need help reach out to us, I think that's something that we want to make sure everyone regardless of type of diabetes, regardless of any comorbid things that are going on for you, regardless of your you know, insurance status, or you know what your job is, if you need help, we're here to help you. So I think keep an eye out on our social media, we boost so many GoFundMe, so many requests for aid.

And then when we have a chance to kind of launch, do our 2.0. And even when we get that c3 status, which is coming down the road as we keep taking those steps towards it, then, you know, there'll be so many more opportunities for folks to kind of jump in and help out when possible. And I think my last thing is just to consider that it takes a lot of strength and a lot of vulnerability to ask for help. So when someone asks for help, sometimes I just like to take it at face value and not have to go through like, why is that person asking for help? What's going on? I remember when I posted my GoFundMe, like a month ago to crowdfund for insurance. I was like, I was filled with so much shame and I was like, I shouldn't have to do this. And it made me so upset that I was like sitting here on GoFundMe, trying to fill this out. And this was after I got involved with mutual aid diabetes, I was like, it's gonna seem weird that someone who is a part of this team is already asking for help. But it just takes a lot of vulnerability and a lot of strength in order to ask for help. So I think if we can extend some grace and empathy towards everyone who's out there asking for help, I know we're going to see a lot of those requests, especially as the pandemic goes on. But just remember that it takes a lot of strength to be able to do that. And remember that we are here to help each other, what do we owe to each other, hopefully, it's that community feeling that you are going to be caught. If you fall, or if you if there's a crack, we're going to help fulfill that and catch you when you're there when you're at that low point. So that's my hope for people listening is that they can just remember to, to see each person as a person that is requesting some kind of help. And we're here to catch our community. And that way, you also know, if you need some catching, if you need some support, we're here for you, too.

 

Stacey Simms  26:03

That's great. Emily, thank you so much. I wish you all the best. Thanks for explaining this. And I would love to follow up down the road. And please keep in touch if there's any way we can help or get more information now please circle back.

 

Emily Miller26:13

Of course, thank you so much for having me. And for you know, just considering that mutual aid is a really important part of our community. Like you said, we're probably already doing it. So now you have a name for that thing that we're already doing. And just keep an eye out at Mutual Aid Diabetes dot com we’ll tap you in when we need you!

Announcer 26:38

you're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  26:44

Lots more information, you can find all of those links that Emily mentioned, at Diabetes-Connections dot com at the episode homepage. And of course, there's a transcription. We started doing that last year. And I'm really happy that the transcriptions seem to be going over well, but if you'd like to learn more, all the links are there.

And I just want to tell a story, you know, when Emily was talking toward the end there about how difficult it is to ask for help. It is such a sign of strength when people are able to do that. And I have a real personal experience, I'm not going to name this person or anything, but I have a friend in my local area, and her adult son has had a real issue with insurance and affording insulin for several years now. And because I run this big local group, it's not difficult for me to get what he needs. And you know, I don't know if it's because kids, you know, sometimes the insurance for children is better than it is for adults. But it just seems easier, right? When you're a parent, and you have a kid with diabetes, it just seems like it's easier to get insulin sometimes than if you're an adult, especially of a certain age, that weird insurance gap. So for a couple of years now, we've been doing this, and she asked me recently, and she said something like, you know, I can't believe you're still doing this for us. You know, I wish that he would get his act together. And she was embarrassed, she felt huge guilt. And I said to her, and I truly believe this, look, first of all, if it were my son, I would want the help. Second of all, you know, he's going to be okay, he's going to pick himself up and figure out what he has to do for work or whatever, at some point. And let's keep him healthy until he gets there. But truly, this is not his fault. In terms of affording the insulin, it is the healthcare systems fault. There was no reason for insulin to be as expensive as it is. And for him to jump through as many hoops as he has to and for her to feel like it's a personal feeling. I just think that encapsulated everything that you must feel when you're trying to ask for that kind of help. And I don't get you know, I don't get emotional on the show very much. And I tried to tell too many personal stories, but that really hit me because Come on, man. It's not It's not his fault. He is a person who was working. This is not some kid who is you know, laying on his couch and mooching off his parents. He just cannot afford what he needs right now. So it's one of the big reasons why I wanted to talk to Mutual Aid Diabetes and I'm hoping to kind of stay in touch and see where they go. And if you want to help all the information is there and you do with it, what you will, but I appreciate your listening here.

So thank you so much 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 29:16

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

Mar 11, 2021

She wore her insulin pump in the Miss America pageant back in 2014 and Sierra Sandison continues to advocate for people with diabetes today. In this Classic episode from June 2015, you'll hear from Sierra just as her book "Sugar Linings" is coming out.

We'll catch up you on what Sierra is doing these days, her advocacy work and her accomplishments outside of the diabetes community.

Article from DiabetesMine about Sierra's STEM studies & accomplishments

Sierra resigns from Beyond Type 1 

 

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

Join the Diabetes Connections Facebook Group!

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Episode Transcription

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by Inside the Breakthrough a new history of science podcast full of Did you know stuff?

 

Announcer  0:13

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:19

Welcome back to the show. I always so glad to have you here. We aim to educate and inspire about diabetes with an emphasis on people who use insulin. I'm your host, Stacey Simms, and this is a classic episode which means for bringing back one of our early interviews, and this is one of the earliest my fourth episode, which originally aired in June of 2015.

Sierra Sandison  is a big name in the diabetes community. You might remember her bursting onto our TVs and appearing all over social media after she won Miss Idaho and then walked across the stage and the Miss America pageant, wearing her insulin pump. She coined the hashtag Show me your pump, which continues to get lots of mentions today got millions and millions back then.

I remember connecting with Sierra like it was yesterday, I was on vacation with my family in Isle of Palms, which is a beach near Charleston, South Carolina. We live in North Carolina, but believe it or not, the North Carolina beaches are generally further from us than the South Carolina ones. So we basically went to Iowa palms, I want to say almost every summer when the kids are growing up. And if you've read my book, that's where most of the bananas beach stories happen with Benny getting sand in his inset and all that stuff that I talked about. But we were leaving, we were just about to be on our way home. And I had reached out to Sierra, I don't remember who it was over Twitter or email, because she'd already been in the Miss America Pageant that had been the previous year. And I hadn't I didn't have the podcast in 2014. But she was talking about her upcoming book, Sugar Linings . And I thought this is a great chance to get her on the podcast. So I reached out and you know, had just launched I don't even think I was on Apple and the other apps yet I had launched the podcast on my blog for the first three or four weeks. And she reached back and said yes, and I gotta tell you, I was so excited. I remember, like the dork, I am high fiving with my husband, he was excited for me. And I gotta tell you, I'm still just as excited to connect with people and hear their stories. It's just a thrill every time somebody says yes, so I hope that never goes away. Thanks, y'all for letting me do this. I really appreciate it. And I'm gonna catch you up on what Sierra is doing today in just a moment.

But first, Diabetes Connections is supported by insight, the breakthrough and new history of science podcast. It was created by SciMar, a group of Canadian researchers dedicated to changing the way we detect, treat and even reverse type two diabetes. The latest episode is all about how unpopular science can be very good science, Galileo probably comes to mind he was not exactly popular in his day. But there are a bunch of really interesting examples that they go through on this episode. Inside the break through you can find it anywhere you listen to podcasts. And remember, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

As I'm doing with these classic episodes, I reached back to the person you're talking to, to see if there's an update any information that they would like us to share and zero was kind enough to send me a message. This is five and a half years now after this interview you're about to hear and more than six years after the Miss America pageant, and she said that the main thing that she'd like to get across is that she has been trying to be much more outspoken about our advocacy efforts when it comes to focusing on insulin access and affordability in recent years, and I will link up another podcast She appeared on. She has been very outspoken about this and really trying to get information out there about better ways to advocate for lower prices and better access with insulin.

She also says she is at Boise State studying mechanical engineering with minors in biomedical engineering and computer science. She was recognized as the number one student in her junior class. She's working on starting a 3d printing company and she is set to graduate next spring, Sierra, thank you for the update. You are absolutely remarkable. And obviously she's keeping quite busy. Here is Sierra Sandison  from July of 2015.

Thanks so much for joining me.

 

Sierra Sandison  4:25

No problem.

 

Stacey Simms  4:26

It's great to talk to you. You have a new book, a new blog, we have a lot to talk about. Have you always been in pageants since you were a little girl?

 

Sierra Sandison    4:36

No, I was actually diabetes who got me in that got me into it. So at 18 I was diagnosed and throughout middle school in high school. I was bullied a lot I didn't really fit in. I didn't know what my identity was. I just like I just wanted to kind of disappear into the crowd. And this diabetes thing was another thing that the bullies could target and call it contagious and say it was my fault because of poor eating. How habits or lack of exercise, which weren't even like a part of my life. So it was ridiculous. But, um, I was just this. Just another thing on top of all the rest of the stuff that was making me different, that the bullies again, could target. So I get diabetes, my parents start pressuring me into training or into getting an insulin pump. And I kept refusing because like an insulin pump is a physical like external, very visible symbol of the fact that I have diabetes and

 

Stacey Simms  5:28

How old were you when you were diagnosed?

 

Sierra Sandison    5:31

  1. So I would always like go to the bathroom to give myself shots and try to prick my finger. And, of course, that caused some problems, because I wasn't testing or bolusing when I was supposed to. Sorry, no. So

 

Stacey Simms  5:45

I interrupted when you were talking about your parents wanted you to get a pump. And I asked about your age only because that's a difficult part of life anyway. I mean, you're transitioning, you're trying figure out what college is going to be like, or what's next. And here your parents think put this thing on you?

 

Sierra Sandison    5:57

Yeah, exactly. And especially as an adolescent female, that struggles struggled with self-esteem, it was not something I wanted to put on my body. So then, a few months later, and by this time, I was either just about to graduate, or I'd already graduated. I can't remember. But I it was at the beginning of the summer, I heard about Nicole Johnson and the woman who directs the Miss Twin Falls pageant, which is my hometown, came up to me, and explained who she was and that her kids went to my school and she knew I had diabetes. And that she thought, I wouldn't want to know that Miss America. 1999 also had diabetes. And I thought that was so cool. So I go and Google Nicole Johnson. And here she is this beautiful woman. And she I found out she has an insulin pump.

And up until that point, I thought that if I got an insulin pump, I would kind of disqualify me from being beautiful, because like, we are fed this definition of beauty, like we look at, we look at women on the front of magazines, and we compare, I compare myself to them. And I'm like, Well, my skin's not that smooth, and my hair isn't flawless like that. And this is not like this doesn't live up to that standard. And this doesn't live up to that standard. And none of them have an insulin pump. So therefore, that must not be beautiful. And now I see Nicole on Miss America, who has an insulin pump, and it's just like, super awesome. So I turned to my best friend that day at school. And while I was googling Nicole Johnson in class and I was like, Brittany, I am going to go to Miss America. And I'm going to wear an insulin pump. And she was like, I don't know what was going on in her head. She just looked at me blankly. But first of all, I didn't know what like how to use makeup or do my hair at all. I was totally, I was awful at everything I ever tried. So it was a struggle to find a talent. I'm not coordinated, like not athletic. Just like I just sucked to everything except for math and science, which didn't really help my popularity much. So I was just like, this dorky kind of nerdy person who always had a book and got made fun of so Britney is looking at me like, okay, like, whatever. But she was just like, what, like, the insulin pump is in like, the little machine your parents keep wanting to get and you're like, refusing to get it. And I was like, Yeah, she didn't. She didn't know where it came from. So then I go home and tell my parents, and they were like being the pageant like, Okay, if it's gonna get you an insulin pump, we'll get you an insert or like, we'll let you do the pageant and pay for this stuff. So Wow. So I compete in my first pageant. And guess what happened?

 

Stacey Simms  8:37

You won.

I lost.

So you lost, but that was not what I expected.

 

Sierra Sandison    8:42

Yeah, so I lost, which was discouraging, but I didn't give up yet. I go to this other little pageant. So I competed Emma's Twin Falls, which is my hometown, but there's also these other little pageants in the state that anyone from the entire state can compete in. So I went to this pageant that was open. That's what it's called when it's like, open to everyone. And there's four other girls were at Miss magic Valley. There's like 20 girls, for Miss Twin Falls, there's like 20 girls. And at that pageant, I won. So I was qualified to go to miss Idaho, and I was so excited. I was like, that was easy. Like, now I just have to win was Idaho, and I will go to Miss America.

And so I show up at Miss Idaho, and there's 18 girls and the way Miss Idaho works is that Friday night, everyone competes. And then Saturday night, they read off the top 10 or top 11 and those girls compete again. So this year, they did a top 11 even though there's 18 girls, because I think they announced that they were going to do a top 11 before they know knew how many girls were competing. So Saturday night comes around and they read off the top 11 and I'm standing in the back with the bottom seven and it was so devastating because I at least if I didn't win, I at least wanted to make the top 11 and knock eliminated right away.

So I got really sad and Brittany was like, Okay, how about this? How about you were your insulin pump wall like solving calculus problems, and inspire little kids that way? No, Brittany, I'm gonna wear my insulin pump on stage. But at this point, I kind of was giving up on the whole Miss America idea, which kind of made me like sad, but I realized that everyone in the audience would hopefully have I think everyone, everyone in general has an insecurity. Like I had my insulin pump and insecurity that makes them different that they sometimes want to hide and I really wanted to encourage them to not only like not hide it and tolerate it, but also to love it and celebrate it because it makes them unique.

 

Stacey Simms  10:46

So how many Miss Idaho pageants did you enter before the one we all saw?

 

Sierra Sandison    10:51

Yeah, so Okay, so I go home, and I compete for missed one falls. And this time, there's like, a gazillion girls, but I win it. And that was a little encouraging, because I just won like one of the hardest pageants in the state. So I, that's a, it's a whole, that pageant takes place, like a week after Miss Idaho. So I had an entire year until the next beside Whoa, I worked really hard, like, really, really hard. And I won't go into detail. But that's what made the difference between year one and year two, and I get to it,

 

Stacey Simms  11:20

I understand you don't want to do it. What are your work on? Is it just your is it just getting in great physical shape? Is it more to it?

 

Sierra Sandison    11:26

So that's part of it. But um, mostly it's really finding yourself and knowing what you believe. So when you go into interview, any question that's thrown at you, because you know yourself so well, like, you can answer it. And so I went to Okay, let's see, in December, Miss Miss Idaho, who was who won when I didn't make the top 11 challenged all of the local title holders to a new year's resolution. And I was about to go backpack through Europe for five months alone, which is a self discovery journey in itself. But I everyone was doing like, I'm going to work out more, and I'm going to eat less candy or something. And I was like, I'm not going to give up carbs. Exercising in Italy, like are you crazy. So I knew that we couldn't be fitness based. So I decided to read one book a month, which I've actually kept up to this day. And it's just taught me so much. But and then of course, we have the Europe thing. And like traveling in Europe alone for a long time. Just to traveling just teaches you a lot. So that's what I changed.

So I get back to miss Idaho. And I really, I bow so I decided to wear my pump on stage. This is the first time I'll ever wear on stage because I hadn't more I will only wanted to work at Miss America where I could explain my story on TV into the media stations beforehand. And everyone would understand what the insulin pump was as well as my message. So I'm beside Whoa, there's a small audience. There's no type one diabetics watching. And I can't go out on stage and be like, Hey, everyone, like this is my insulin pump. And my message is for you to love the things that make you different. Okay, bye. Let's get on the show like that. So I get to miss Idaho in my pump, I put my pump on my pants. In that day, it just looked so much bigger than normal is like when I got a zit on my forehead and it looks like I'm so I'm trying to talk myself into wearing the pump and I'm, like freaking out. And finally I calmed down and I'm like, no one's gonna notice no one's gonna notice. So

 

Stacey Simms  13:27

why did you Why did you wear it on stage? And what was it like, just before you walked out? If that wasn't the plan, what happened that you said, All right, I got to do it.

 

Sierra Sandison    13:35

Um, so I didn't think I was ever going to go to Miss America because of the not making top 11 thing so but I really I got into pageants to where my pump on stage. And I wasn't going to give that up. Even though it wasn't the Miss America stage in front of millions of people on national television. I still wanted to know that I had the courage to do it. Um, so I walked out of the dressing room. And this little girl's staring at me and I met this in this like really self-conscious state like, no one look at my insulin pump, please. And the first thing she blurts out is like, hey, what is that she points to my insulin pump. And my heart sinks and I get really angry at the same time when I go back to the dressing room to kind of rip off the pump. And she's and she follows me and she explains that she's diabetic as well. And we get into the conversation about diabetes. And I end up asking her What kind of insulin pump she wears. And it ended up that she didn't have an insulin pump because she was really scared of what her friends would say. So at this point, I was like, I don't care what the judges think. I don't care what the audience thinks I'm gonna go where my insulin pump for this little girl and so that weekend I ended up winning and her mom came up to me and are her McCall is a little girl and her mom came up to me and Nicole was like, I'm getting an insulin pump. Oh my gosh. Oh my gosh. Oh my gosh. And then her mom after McCall ran off to tell some other friends how excited she was. Her mom came up to me crying because she's so excited that like she never thought her daughter would get an insulin pump agree to it. let alone be jumping up and down excited and confident about it. So that was probably the best. And then, of course, from there, I went to Miss America and made tough teen and yeah, yeah, there's

 

Stacey Simms  15:10

a lot more to talk about. Yeah, I have to ask you, though, it's just so inspiring to hear. But when you walked on stage, and you've been in pageants for a couple of years, harder to wear the pump, or harder to wear that bikini, because Wow, did you look gorgeous? Oh, my gosh, that was so hard.

 

Sierra Sandison    15:28

I actually have I so I, I work out a lot. And I like, I do CrossFit all the time. And I competed not now Geez, not now. But I competed in, like, power competitive powerlifting, or I guess that's redundant powerlifting competitions. So I was used to like being in like one piece, or just a sports bra and shorts. So that's like being in the bikini, scary for a lot of people. But it really wasn't that big of a deal for me until I put the pump on. So when did you realize that the pump

 

Stacey Simms  15:59

and the pageant was becoming an actual movement, you know, that people were responding so strong.

 

Sierra Sandison    16:06

Um, so I posted the picture online. And I kind of, I don't know, if some girl a lot of girls tried to start social media campaigns for their platform, and they just kind of flop because no one's really interested in them, if you know what I mean. So I was really scared that no one would like, like my message or because some people were telling me like, like fighting the beauty standards is stupid. And it's a stupid cause. But it's something I'm really passionate about. Because when I see someone like loving who they are, even though they don't look like a Victoria's Secret Angel, it really like encourages me to love myself. And so I really wanted to encourage that. But I also didn't think that anyone would take the time to take a selfie with their insulin pump. I don't think I would, I don't know. I just like, so I posted it. And then I went on with my day. And I got back to my phone. And it had like 1000s of likes, and 1000s of shares. And I went on Instagram, and people had been posting like crazy. And it was like it was incredible. So I think that like the same day or maybe the next day, I realized it was going crazy. It was awesome.

 

Stacey Simms  17:15

Do you have any numbers? Or do you know how the hashtag Show me your pump? How far or wide that went? I mean, I know you were on the Today Show. And good morning, American NPR picked it up?

 

Sierra Sandison    17:24

Yeah, I think so we, we did the math on the hits. And like number of viewers on all the TV shows and all the articles that were written. And we think my story reached about like five to 7 million people. And then as regard in regards to how many pictures were posted, you can't count those on Twitter, or Facebook. But on Instagram, there's almost 6000 today.

 

Stacey Simms  17:50

So the social media campaign is going on in the time between Miss Idaho leading up to Miss America. Was it difficult to balance getting ready for the pageant in September of last year, when you were also being asked to be a guest on national shows and little kids are coming up to you? What was that like?

 

Sierra Sandison    18:06

That was insanity. So I was actually the last girl. And out of all 50 states, I was the very last person crowned. So I had only eight weeks to get ready for Miss America, which is an insanely short amount of time. So I was super stressed. I was up like, from 8am to like, probably 1am. And it was just it was insane. And then you add all the interviews on top of it. And it was so overwhelming. But in the end, I think it actually helped because I was practicing interviews part of Miss America. And obviously, when I got to Miss America, the judges already knew about Show me your pump. And it was a big topic of conversation in the interview. And I had talked about it so much that I didn't have to stumble over my words, I knew what I wanted to say, etc. So having all those interviews with the media, which there could, there was like five, there could have been like five to 10 a day. Having all those interviews actually helped me prepare a little more even though it was a little hectic.

 

Stacey Simms  19:06

Okay, so you won the People's Choice Award in the Miss America Pageant. How do you find that out? Is that in a live on stage thing? Yes. So

 

Sierra Sandison    19:12

I just find it out when like live TV, I find it out as soon as you guys in the audience and across the nation do so that was what was that like it was I think I knew that I kind of had a chance. And in the past, I've tried to predict like the Miss America winters at home. And the way you predict the People's Choice person is by looking at the YouTube views and I was not winning in YouTube views on the People's Choice videos. So I was kind of stressing about that. And I really just I really wanted to wear my insulin pump on stage in my swimsuit. And that's all I wanted to do. I just was like make it to the top of team and then you can eliminate me Please give me People's Choice, please. And at the last minute I think Miss New Mexico had just like a rush of votes and my heart just like

 

Sierra Sandison    19:59

it's New Mexico.

 

Sierra Sandison    20:01

Yeah, my roommate and like one of my best friends. But I was like, No, like, this can't happen. So when they called my name, and I don't know, I'm used to like losing things in high school like being the last one picked for dodgeball team making, not making like even the JV team for basketball. So I was like, it's not gonna be me like, I'm used to this. And then he said, and you're the winner is Miss Idaho. And that's all after that moment. That's all I remember. Everything else is a blur. I think I fell down to the ground. And like, I don't even remember, his

 

Stacey Simms  20:33

pictures are pretty amazing. It's a wonderful reaction. I love it.

 

Sierra Sandison    20:36

So So what happened for you when you did go on stage? Oh, my gosh, that was the most amazing feeling because I know like, it just seems I don't know how to explain the stage like especially the same was with Dr. Oz, like the Dr. Oz studio was so like, exactly like it was on TV exactly like it is on TV in the Miss America stage is exactly what it is on TV. Except I can also see like, the tent, like the audience of 10,000 in this gigantic, gigantic room that's like a football stadium. So it was it was thrilling. And I just couldn't believe that I finally, like I reached my goal. And it was coming true right there. And I don't know, it was awesome. Fabulous.

 

Stacey Simms  21:19

It's really is a remarkable story. I'm so glad to share you what is next for you, you have a new book out, you have a new blog you're launching, tell us what this is.

 

Sierra Sandison    21:28

Yes, I'm so excited. So I've had this idea for a while. And like, finally, my friend was like, do it. And I don't know, all authors are a little self conscious about getting your ideas out there, because who's gonna read it, like, Who cares what I have to say, so my best like one of my, I call her my diet bestie one of my diet besties Hadley, George was just like, you need to write it. So I sat down in Cincinnati, probably in February and started writing. And I've been, like, just rapidly writing way since then. But it's called Sugar Linings , finding the bright side of type 1 diabetes.

And for me, diabetes has been a huge blessing, obviously, because of Miss America and all the opportunities it's brought me but I there's also things I also thought that before I really succeeded in pageants. So the other things I talked about, besides my own personal story are Sugar Linings  that apply to everyone's life, not just inside the house. So I talked about how diabetes makes us more stronger and resilient. How it can bring us friends. So like Hadley, Hadley is like one of my best friends and I would not go back in time and get rid of diabetes, if it meant losing her friendship, and then how it can give us a passion. So lots of people get diabetes and then become very involved in fall in love with JDRF, or whatever diabetes organization they decide to volunteer with. And the same is true for a lot of other hardships, I think we face in life, whatever thing you go volunteer for, usually people have like a very personal story of why for why they got involved, and why they became passionate about it. So and I think being passionate about something. And making a difference is a really important, like part of all of our lives, like when I go to schools, a lot diabetes, and at the end, I always close up with whatever hard thing you're going through, like use it to make yourself stronger, and also make a difference. And I asked all the kids like who wants to make a difference before they die, and everyone's hands flies up. And it's just like, so encouraging to know that, like most humans just have this natural desire to make a difference. And diabetes gave that to me, and I hope it can give it to a lot of people. But if someone for example, isn't isn't like passionate specifically about diabetes, even though they have it, the last chapter in my book is about how it does increase our ability to show compassion, empathy, so we know what it's like to get misinformed and hurtful comments and just deal with this disease and the stress that goes along with it all day every day.

 

Stacey Simms  23:54

The book is called Sugar Linings . And the blog is also Sugar Linings . But the blog is a chance for other people to tell their stories.

 

Sierra Sandison    24:02

Yeah. So I'll also continue telling, like continue updating people through that blog on what I'm doing and what's going on in my life. And maybe if I discover a new sugar lining, I'll talk about it. But I really wanted to give other people the chance to tell me about how it's made them stronger about their like diversity about how diabetes gave them a passion to serve the diabetes community or maybe a situation where their diabetes experience gave them empathy for help them be empathetic towards someone else. Or if they have some sugar lining that is maybe unique to them or maybe true for everyone that I just haven't thought about. I didn't mention my book, but that they want to let the diabetes community know. So we can add another sugar lining to our list.

 

Stacey Simms  24:51

I have a couple of questions that I was asked to ask you. If I may, when people found out I was talking with you. Rebecca would like to know how you deal with the down days when having diabetes on board just feels like it's it's too much to handle.

 

Sierra Sandison    25:08

Yeah, so there's two things. One, I think the hardest week for me was actually that time where I was visiting Hadley in Cincinnati, and she encouraged me to start writing this book. I think my pump like malfunction, so I was like, Hi. And then when I got like, they got my new pump to me super quick, which they're, they're awesome about that. So they got into come to me, but I'd been high for a little while. And then I got my new pump on, and my insulin had expired, because it had been in like the heat. So then I was high for another four days before I figured that out. And I was just like, Oh, it was miserable. And I had like five schools every day that had to go to the speedway. And at the same time, I was kind of going through this identity crisis, where people tell us over and over again, like, diabetes isn't who you are, it's not part of your identity, like you're so much more than your disease. And here I am, like, I am the diabetic beauty queen like that is my identity to most people. And I was kind of feeling guilty, like, should diabetes, not be my life, like, I'm so involved? Should I, like get involved with something else and not do diabetes? Does that make sense at all? Oh, absolutely.

 

Stacey Simms  26:19

I think it's difficult for any of us to find a balance.

 

Sierra Sandison    26:21

Yeah, I was like, Oh, I felt just felt like it was overwhelming my identity. And Hadley has an organization called type one teens that she started. And she like, she came into my room because I was crying. And I kind of opened up to her about it. And I felt so so guilty about feeling that way, like feeling like, I shouldn't be serving the diabetes community. And she's like, Oh, my gosh, I totally know how you feel. And she kind of made me feel like, it was just a natural feeling. And she's always the person usually, she's always the person I go to when I'm having just like the down days. So first of all, I use my diversity to get over him and or to get through the down days. And then second of all, something that's really inspirational to me is when I meet people who have lived with diabetes for like, 30 or 40 years, and like I'm, and that wasn't in 2015, like, they didn't have a Dexcom they didn't have like an awesome touchscreen insulin pump from Tandem. They had, like, the like, we hear horror stories about what like the diabetes products they use. So like if they can do that with those. With those, I don't know what to call them. The

 

Stacey Simms  27:30

The, the bad old days of diabetes, right? I mean, the old tools like boiling needles, that kind of stuff.

 

Sierra Sandison    27:35

Yeah, do 40 years, and most of those years have the old diabetes tools, and they have way less resources and dealt with a lot more misdiagnosis and misdiagnosis sees, is that the word? And we do today like I can do today. I'm curious

 

Stacey Simms  27:54

with what you just said, Do you have an obligation to always show your pump? I mean, I'm curious, you know, you're the show me your pump lady? What if you don't feel like showing your pump? Does that come into your mind?

 

Sierra Sandison    28:04

So it is totally okay, if anyone does not want to show their pump. And I had to come to terms with that this year, because I get like, I'll post a picture where my insulin pump is like tucked in my speakeasy and I'm wearing a dress. It's totally not visible. And some mom will comment and be like, Where's your pump? Like? My Are you hiding your pump? Like I don't want my daughter to see this. And I'm like, they don't say that word for word. They'll say where you're pumping, where's your pump, but that's like, how I feel when they say that. And it was really hard for me for a long time. Because like I'm a human being I don't want I don't want diabetes to be the forefront. Like I said, like I struggle with that identity thing like is diabetes like, like a whole, like 75% of my identity now, and I don't want it at the forefront or like in front of everyone all the time. And at the same time. I'm not ashamed of it. But I just don't want it to be the topic of discussion constantly. And Kerri Sparling, who's the blogger in charge of six and tomie.com. just posted she went to like a red carpet event with her husband. And she posted a blog about how she the dress she got just like she there's no way to make it look great with an insulin pump. So she decided to take off her insulin pump and do shots for a couple days. And like, that's okay. And I I commented. And I was like this, like means so much to me. Like, I feel like I'm not allowed to hide my pump. And it's not that I'm hiding it. It's just that I'm not. I don't know, I'm not like purposely hiding it. I just like don't want it front and center sometimes. And I met her this last weekend at a conference we were supposed to speaking at. And she was like that I'm just like, so that comment just warmed my heart and I'm like, you just need to know that it's totally a natural feeling to not want to show your diabetes all the time and like I don't care what your fans say. Like if you need to hide your pump once in a while. Like you should feel okay to do that. So with that, I mean you're you know, show me your pump is wonderful and empowering but it doesn't mean you have to wear it on your head. Yeah.

 

Stacey Simms  30:00

Michelle asked me to ask you, if you have advice for parents who are struggling to give their kids with diabetes independence.

 

Sierra Sandison    30:07

Hmm, that is so hard. That's like, I always talked about this at conferences, and I haven't, there's no perfect answer to it. But I do think a balance is really important. Between like, keeping your kids safe, and making sure you're empowering them and giving them independence at the same time. And I think with so I didn't get diabetes till I was 18. So I was immediately independent, and that was fine. But in everything else in life, my parents were really, really strict. Up until the point I was 13. Like, the most insanely strict parents you'll ever meet, and then back by, like, at 13, they decided to like start. So and this is all they're like, they had this all planned out in advance, at 13. When each of me and my siblings, my siblings, and I turned 13. They started like, slowly, carefully, like making letting us be more and more independent, and at the same time, instilling like adjectives into us, like, you're so responsible, you're so intelligent, you are so like, independent, we're so proud of you. And even when those things weren't true, like those statements were definitely not true throughout most of my high school, but they kept instilling them in me. And eventually I was like, Yeah, like, I am responsible, like, that is my identity. I'm, I'm smart, and I'm responsible. And I'm not going to make this bad decision

 

Stacey Simms  31:23

theory this, your book is launching, this is a very busy time for you. What are you most excited about?

 

Sierra Sandison    31:28

Oh, my gosh, I am excited, huh?

 

Sierra Sandison    31:32

I Well, I'm

 

Sierra Sandison    31:33

most excited, I think so a lot of girls, when they hand down their crown, it's a really bittersweet time, because they've been so busy all year, and they're exhausted. So now they're gonna stop. But at the same time, they kind of don't want to stop. And for me, I've like figured out the balance. So I'm not exhausted, and I'm having a blast. And there have been like, back in like, January and December in November, I was exhausted. And I was like, holy cow, I need, I cannot do this. So I kind of like learned how to say no to things so I could survive. And now I'm at this perfect balance where I'm not too busy. And I'm really enjoying it. But if I was anyone else, I would have to stop on June 20. And because of Show me your pumping because of the awesome diabetes community I've been, I've been I have like events booked out and conferences to go to, until like December right now, which is super exciting. Because I don't have to stop like being decided, oh, I'm not allowed to wear the crown. I get to do everything else that I love. And I'm not really I'm kind of like a not a girly girl. So I don't care about the crowd anyways, but people still can try it on. So

 

Stacey Simms  32:34

literally, you can bring it with you. But you can't put it on.

 

Sierra Sandison    32:37

Yes,

 

Stacey Simms  32:37

exactly. All right, the next interview is going to be all of these pageant rules, because I didn't know any of this stuff. Yeah, that's terrific. So you can so so you know little girls or even the girls like we could put it on and take a picture with you. Yeah, that's great. That's great. Sarah Sandison , thank you so much for talking with me today. It's been so much fun and the books gonna be a big success. I hope we talk again soon.

 

Announcer  33:04

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  33:10

More info on Sierra and what she's doing now and then taking a look back at her story. You can find all of that at the episode homepage at Diabetes connections.com. I mentioned towards the beginning of the show that she's focusing a lot on insulin affordability and access. And she stepped down a while ago from her position at beyond type one, she was in a kind of a volunteer leadership position there and stepped down over this issue. How you might have seen that on social media A while back if you didn't, I will link up again, the more information on the story behind that and so much of what she's doing now, really just a remarkable person. And of course, I'll link up the information on her book Sugar Linings .

Alright, I am working on a bonus episode that might come out in the next couple of days. I have an episode about mutual aid diabetes, this is a new group that has sprung up recently trying to kind of organize and get better information out to the community about a problem that again, insulin affordability and access but it's something that many of us are already doing in our local communities, right getting insulin to people who need it at least we do that in in Charlotte, I mean, I've hopped in my car several times in the last couple of months and careered you know insulin here there and supplies and things like that. And I bet you have done that too. Or at least connected on social media or amplified some mutual aid diabetes is trying to be more organized about that. And our next regular episode is all about low blood sugar. I am talking to two powerhouses of the diabetes community ginger Vieira and Mike Lawson and we will be talking to them about their new children's book but really about low blood sugar what it feels like what people without diabetes who care about people with diabetes should keep in mind all that good stuff.

Question for you before I let you go too many episodes. What do you think? Right? We're at two episodes a week now with these classic episodes started that back in February and throwing Get a bonus episode and my overwhelming you. You don't have to listen to every episode. I hope you don't feel guilty if you don't, but I'd love to get your opinion. What do you think here? Is this the right balance? Should I cut back? Maybe go to one episode every two weeks space it out a little bit more? Let me know I'll put it in the Facebook group as well as a question for you. Thanks as always to my editor John Bukenas at Audio Editing Solutions. Thank you so much for listening. I will see you back here in just a couple of days until then. Be kind to yourself.

 

Benny    35:34

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

 

Mar 9, 2021

The Wanek Family Project is an ambitious project to find new ways to treat, stop or prevent diabetes. The researchers who work there are also figuring out how to define what we all mean by cure. City of Hope (recently renamed Arthur Riggs Diabetes & Metabolism Research Institute) announced a six year plan to find a cure for type 1 back in 2017. This week, Stacey talks to Dr. Bart Roep about their three top areas of investigations and explains the thinking behind that "six year" announcement.

In Innovations, rumors on a new smart watch with built in glucose monitoring -  hope or hype?

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 Transcript

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, an ambitious project to find new ways to treat stop or prevent diabetes is also figuring out how to define what we mean by cure,

 

Dr. Bart Roep  0:37

the ultimate cure is stopped insulin injections, which is of course something I can just promise at this stage that I won't stop until we have a conference there. So that is the only promise I can make. But that is high bar. But we can also think of a cure to stop the disease process the immune response destroying beta cells, right? Because with that we we preserve a source of insulin.

 

Stacey Simms  1:02

Dr. Bart Roep is the director of the Wanek family project to cure diabetes at City of Hope. He's going to give us a lot of information about their top three areas of investigations, a lot of which are going on right now some of which need your help

In innovations, rumors about a new watch with built in glucose monitoring no needles, hope or hype? 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. I am only so glad to have you along. I'm your host Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin. You know, my son lives with type one, my husband lives with type two, I do not have diabetes, but I have a background in broadcasting. And that's how you get the podcast.

I was looking back, like so many of us are doing right now at march of 2020. And by this time, a lot of you had actually probably already begun staying at home stay at home orders. I believe it started in some states that early. But we had a lot going on in early March last year. And I was looking at the calendar to confirm this. But this really happened. I moved the first week of March, I spent one night in my new home. And then I went immediately to a JDRF conference the very next day, I had to pack my suitcase before I moved that I knew I would have my suitcase and my clothing in it for the conference that was in Wilmington, North Carolina. And that was March 6, seventh and eighth that we were all there at that very last JDRF conference locally in North Carolina that we all went to.

I came back on Sunday, I moved a bunch of furniture around Well, my husband and my son moved the furniture, we hung some stuff on the walls on Monday, Tuesday, the 10th. One year ago to the day of this episode being released, I took Benny to his last scheduled physical therapy had knee surgery in 2019. And that was his last PT. And then a couple of days later, we flew my daughter home from college. And that was it. That was March 14 for us 2020 that we battened down the hatches. And for us all of this started.

So here's to better days ahead. Look, I know it's still not easy, but I've seen many of your photos getting the vaccine. And I have to say I have a lot more hope than I did a couple of months ago for sure and even a couple of weeks ago. And hope is really the through line of this episode. And not just because the name of the organization has hope in it. You know, I mentioned City of Hope just a few weeks ago here on the show talking about their reverse vaccine trials. And then they reached out to me to come on the show and talk more about that and what else they're looking into. But they actually have changed their name recently. They're still on a mission to cure diabetes. We will talk about all of that in just a moment.

But first Diabetes Connections is brought to you by Dario health and bottom line. Look you need a plan of action with diabetes. We have 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 Dario health. There are published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one see within three months 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.

My guest this week is Dr. Bart Roep the director of the Wanek family project to cure diabetes at City of Hope City of Hope very recently changed its name to the Arthur Riggs diabetes and metabolism Research Institute. In honor of its longtime director and research pioneer Riggs scientific achievements include developing the technology that led to the first synthetic human insulin, a breakthrough that enabled mass production of insulin. I use the the words city of hope and Arthur Riggs diabetes Institute kind of interchangeably here, they had just changed the name, I think two weeks, maybe even one week before this interview, but many of you know that name, City of Hope, because in 2017, they made a big splash with an announcement about funding a project to cure type one. As you can imagine, a lot of eyebrows went up, including mine. And we talked about that in the interview, I am actually going to come back after the interview and talk a little bit more about the coverage of Dr. Roep refers to it and I just want to link it up and call your attention to some things.

What's going on here is that they have started a six year program with the goal of finding a cure. And we're just past four years into it. Dr. Roep has been researching type 1 diabetes for more than 25 years, he is passionate about serving this community and ultimately finding a cure. Dr. Roep, thank you so much for spending some time with me. I'm really interested to learn more. Thanks for jumping on.

 

Dr. Bart Roep 5:55

My pleasure.

 

Stacey Simms  5:56

Let's just start with some of the basics here. If you don't mind, you're the project director for the one family project for type 1 diabetes. Can you tell me a little bit about what that is?

 

Dr. Bart Roep  6:06

Yeah, absolutely. This program has been made possible by a wonderful gift from the Wanek family that allows us to do really novel, innovative out of the box, things that are all targeted to cure type one diabetes. So there's a very tight timeline, it's a six year program, we just entered year five, and we try to really cure diabetes in completely different ways. Because like you and all the stakeholders, I've been disappointed with the success of the current types of therapy. So it's all about curing type 1 diabetes, in close collaboration with one family and other corporate partners. And we're now at the harvest stage. So we now have a couple of programs that are really exciting and innovative, that are trying to really embrace the immune system and not suppress it and trying to cure diabetes.

Stacey Simms

I know that we could take any one of those programs, and probably spend more than an hour talking about each one of them. Can we kind of go through a little bit about each?

Dr. Bart Roep

We think that the immune system of a person with type 1 diabetes is the one that a cancer patient is craving. So we think it's the best immune system in the world. And but it comes with a price because even some of our own tissue may sometimes be attacked, like what happens in type 1 diabetes where the source of insulin, the beta cell is destroyed. But I think it's actually with good intentions, because I think that the immune system is looking for this trust issue. So we have come to appreciate that it is actually not a mistake of the immune system, it's actually probably a mistake of the beta cell, and the immune system is responding to it with good intentions. And that changes the entire paradigm, we believe that immunotherapy alone will not be enough, you must make islets happy again, because that's the provocation of the immune system. And maybe that alone could be enough to deter the immune response. And then the way that we try to do this is with a soft touch. So we want to negotiate with the immune system, we want to teach it how to do it right. Whereas all the therapies tested so far, have been trying to suppress the immune system. And as an immunologist, I think that is awful. And working in a cancer center, I know that this can cause cancers. And certainly during times of a Corona pandemic, the worst thing you can do is suppress the immune system. So what we want to do is do it very selectively and do do targeted, in a sense, it's kind of precision medicine, where we just want to treat the problem with type 1 diabetes and read the liver rest of the immune system in these and fight cancers and infection. That is what they all have in common. And that itself is already, you know, completely new and some people call us crazy. And the type of ways we're doing it, we have what we call an inverse vaccine. And we add inverse because normally people think of a vaccine that is meant to activate the immune system to fight virus or cancer. And we do the same, but we inactivate the immune system, but very selectively only to the vaccine that we get, which is a beta cell vaccine. So that's one.

And the second one is that an all of this is actually coming from cancer therapy, what the breakthrough was that we genetically engineer the soldiers of the immune system, we give the cancer specific receptors, which then attack the cancers. And that has been a breakthrough in cancers. But what we want to do is exactly the opposite. We want to take the negotiators of the immune system, give them the new receptor, so they go to the islets and negotiate with the immune system. Try to do it right. That's what we call the Car T program.

And the third one is is really become one of my favorites. And that is the very, very first therapy that's actually on the one hand trying to make beta cells happy again. And on the other hand, you know, redirect the immune system modulate the immune system. And that's done with one and the same product. It's an antibody that is already extremely successful in psoriasis and is now tested in, in arthritis graft versus host disease and transplantation or even in COVID. In extreme cases of COVID, it helps to moderate the immune response. And we have given that particular antibody a backpack with a growth factor that makes islets happy again. And the beauty of all of this is this backpack is only opens at the site of inflammation. So it the antibodies delivering the growth hormone for beta cells only where it's needed, namely, any inflamed islets. Now, when I say it's already started smiling, because it sounds almost too good to be true. And when that's the case, you probably are on the right track. So those are the three programs that we have.

On top of that, we have a program from Dr. Riggs, the founder of our institute and major benefactor. And that has to do with dealing with complications of disease. So we have a molecule that we know is, is very effective in reversing and preventing neuropathy, one of the complications, diabetic complications, and we're trying to get that product also tested in in the diabetes arena to see whether we can prevent or reverse diabetic complications. But the other three are intervention studies. And what they also have in common is that they are also the first to really do personalized medicine in the sense that we've come to understand that every patient is different, the moms were right, we should have listened to them. And so we get that now. So we have drugs that we can give either 10 years before or after diagnosis before it's more difficult to find but after it's very easy to find, because that's where the majority of our stakeholders are. And we have drugs that we would probably reserve for the medical emergency of the diagnosis because they're a little bit more aggressive, a good come with some more risk. And we have products that we could give at any stage, like the antibody therapy, the bionic as I call it. So so that is also completely new. Now I'm really excited and proud of this program. And we were so eager to test this in the clinic and the one that is in the clinic is the vaccine, which is probably the weirdest of all

 

Stacey Simms  12:27

I'm gonna stop you right there. I'm gonna stop you right there because I want to, I'm glad to hear you say that. Let's go through these three main programs, as you said, because the inverse vaccine is really how we got young the program this time around because I was talking about it a couple of weeks ago and realized I hadn't had anybody from City of Hope from the Arthur Riggs, diabetes and metabolism Research Institute, as it's now called on the show. So let's talk about where you are in the inverse vaccine. Because at that time you were looking for people to be in the trial, are you in trials? Okay,

 

Dr. Bart Roep  12:59

we are we are still recruiting. But we need you know, for these types of trials, especially at this early stage, we need to be very picky, which is the worst thing you can do to a patient. But we need really need to find exactly the right patients. So we already did one trial, where I'm from the Netherlands as my accent probably is, is disclosing, and we did a trial there in patients that had, on average, about 12 to 15 years of type 1 diabetes just to see whether it was safe and feasible. And just to explain what we do, we takes immune cells out of the patient that we treated in the lab with vitamin D. That's a magic bullet. And then after a couple of days, we add the vaccine, which is a piece of proinsulin, the precursor of the hormone insulin, and then we inject it back into the patient under the skin. So those cells will directly swim to the pancreas and the islets and the draining lymph nodes and do their do their magic because it's truly magic. What what's happening there.

And the strange thing is although I told these patients, the volunteers in the Netherlands not to have any expectations in terms of benefit. Three years later, they are all time low there HBA1C they are difficult age, they're in the mid 20s. Usually. And you know, there are an HBA1c of 6.2. And you know you as a mom will know that that is something or you count your blessings. So it may actually be that 10 years after diagnosis that could still be a benefit of just re educating the immune system. And what I love most about it is the legacy. We do two injections Prime members just like with COVID vaccinations, and then with time they get better. How awesome is that? Right? So it does look like this could be a disease modifying therapy. Now it's very early on. So that's why we now do a face to trial while actually Phase One B trial, I should call it, it's still to do with safety, but now in patients that still have plenty of beta cells, because that's the other novelty. And we now know that most patients still have beta cells, but certainly in the first five years after diagnosis, they are functional and make insulin. So that is the group of patients that we want to test now to be more certain that we can actually preserve that beta cell function and preserve a source of insulin in those patients. So

 

Stacey Simms  15:28

yeah, in those patients that have the 6.2 A1C, as you had mentioned, I assume though, they're still using insulin for now.

 

Right back to Dr. Roep answering that question in just a moment. But first Diabetes Connections is brought to you by Gvoke HypoPen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke Hypopen comes in. It's the very first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give Gvoke correctly. I'm so glad to have something new, find out more, go to Diabetes, Connections comm 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 Dr. Roep answering my question. Were all those people who are doing so well on the studies still taking insulin.

 

Dr. Bart Roep  16:34

They are. And that is why, you know, we also like to test it sooner. But how important is it to finally also address our attention to people with established disease, because all the other trials so far have always been limited to very newly diagnosed disease or just before diagnosis. And the vast majority of patients and you know, one of them, they have disease. And people always thought that there is nothing we can do. And it's game over. And that's wrong. Most patients have beta cells, and they may not function. But you know, the first thing to do is to avoid that they keep being attacked. And then with other therapies, making islets happy again, we may get them back into action. And I just believe that what we have done unintentionally, perhaps is that we did both, we stopped the immune response, we stopped the inflammation and maybe that itself with time is enough to have those beta cells come out of hibernation. So that is the working model that we have with that particular therapy. And we have to confirm that that that earlier observation, which is extremely exciting and a small group of patients will hold in California.

 

Stacey Simms  17:46

Yeah, no, that is that's great. The second study that you mentioned, was this the bone marrow or was it you say it was used in cancer patients? Can you talk a little bit about that

 

Dr. Bart Roep  17:55

both of these other therapies aren't directly taken as lessons from cancer therapy. You know, 10-15 years ago, we were treating cancer by resection surgery, chemotherapy, radiation. And nowadays, it's all immunotherapy. And one of the reasons why I joined city of hope is that I can learn from the cancer, the oncologists how to treat cancer in a personalized way. Because we also know now that even breast cancer is not one disease, it can be dozens of different flavors that require different therapies and sometimes only very mild. And that's what we want to do in type 1 diabetes as well. Except when we do that, we want to do the complete opposite. So because if you suppress the immune system, you get cancer and some cancer patients that are treated with immunotherapy to cure the cancer, they get type 1 diabetes, so it shows that you have to do it very sophisticatedly. That's what we try to do here. So in cancer, we engineer the soldiers of the immune system, what we call the effector T cells. And in type 1 diabetes, we do the cells that are normally regulating the response to empower them to regulate inflammation, but only there where it's needed because I want them to fight COVID I want them to fight cancer. So So it's the same principle, but in the exact opposite direction.

 

Stacey Simms  19:19

So where do you stand in terms of those studies? Are you doing clinical trials right now? Are you still in the research phase?

 

Dr. Bart Roep  19:26

Yeah, well, thanks to this wonderful Womak family gift we have in two and a half years and that is really I know we are spoiled with COVID right where it was less than a year, but they got billions. We did it in two and a half years. And we are already knocking on Heaven's Door. We are starting our negotiation with the FDA to test it in the clinic. These are such obvious therapies and also they are soft touch right? It's the patient's own immune cells and it's not the effect this is not the soldiers as negotiators and everyone sample the vaccine has vitamin d3 for crying out loud as the magic bullet, right? I mean, this is also a mellow, that we hope that we can convince the FDA that we can move fast. And we can avoid being misled by mouth studies and so forth. I don't want to cure mice, I want to cure patients. So these therapies have all that going for them. So so that's why we have a very fast track. Thanks to all the knowledge that was already there from cancer, except that we tweak it all we had to do is give it a little tweak.

 

Stacey Simms  20:32

I'm hesitant to ask this because I don't want you to make promises. But what is the goal of what you're talking about? I mean, I love how it sounds. But is the what's the outcome supposed to be is? Is it actually a cure? Is it better control with insulin? What what would the outcome ideally be for these studies?

 

Dr. Bart Roep  20:48

That is the most important question to ask Stacey. And I thank you for this because the worst we can do is raise false expectations. So we really have to think about what we call a cure. And it's different things for different people, the ultimate cure is stop insulin injections, which is, of course, something I can just promise at this stage that I won't stop until we have accomplished this. So that is the only promise I can make. But that is a high bar. But we can also think of a cure to stop the disease process the immune response destroying beta cells, right, because with that, we we preserve a source of insulin. And with other therapies that we are using in type two diabetes, what can get them back to work. So that is one, of course, improving the quality of life, if you have a source of insulin, the probability that you get complications, including hypos, which most patients experience, that is also then pretty much a cure too. So there is all these different definitions of a cure.

And, and for me, as an immunologist, the first thing to do the low hanging fruit is that we stop the immune attack. But that's not good enough, the next step will be to get therapies to get hibernating beta cells back to work. And in the worst case, in end stage disease, new sources of beta cells are important. And I'm also involved in various kinds of beta cell replacement therapy. And also as part of the Wanek family, we have been working on different kinds of stem cells, including those from the patient's themselves, to turn them into insulin producing beta cells and make that as a source. But that is, that's a long story. That is not what we can deliver in the short term. In the short term, we may be able to succeed to stop the disease process, which is that's a breakthrough. If we can do that.

 

Stacey Simms  22:42

What would that look like in somebody who lives with type one right now? What would stopping the disease process mean? But would that be something we have to interfere immediately upon diagnosis? Or would it have an effect on somebody who's lived with it for five or 10?

 

Dr. Bart Roep  22:55

Well, the point is, is probably most easily measurable, early, after diagnosis. But that has made some people misled to believe that it can only be done at diagnosis, I think that you have to be more patient to see efficacy. When you use those therapies later on, as we did with the adverse vaccine. I mean, we already completed the trial. And we were writing the paper. And we just thought, Let's try one more blood sample Three years later, so we invited the patients back in. And that's when we got this surprise that they actually had a fantastic glycemic control. So that is just a gentle reminder that we don't, we should not be too impatient and just give people diabetes a chance to recover and do this.

And some of those therapies actually have a legacy we have the antibody that we're using in with the backpack to make islets happy, again, that actually has had two cases now, where only after three years, the patient's became insulin independent. So that is really bizarre. It's unpublished. So you also have to be careful when you say this, but you know, I put my head on the block here. Now you're on my stakeholders, you deserve nothing but the truth in a very early also. So that is already amazing by itself. But what I find most striking in this process is that it took a couple of years after we stopped the therapy, that this was going to happen. And that probably tells us that we really just changed the cause of events that we really, you know, interfered in the disease process. And the body has an amazing regenerative capacity, right. I mean, we I think we have largely dismissed that. But our body can really regenerate amazingly well. And that is something that, that we now need to see whether that holds. And it's as I said, this is brand new data, some of it I could not even dream could happen and I'm always be bad for a setback as you always must be. But all the surprises we've had until today were favorable. That scares the hell out of me. No, seriously, I'm, I'm with you there. If you are the world's worst diabetes mom, I must be the world's worst diabetes doctor because I've been working on this for 30 years. And only recently, we started curing people, but we have cured people.

In fact, one therapy that in cancer is very common and we have done 16,000 of those at City of Hope  is bone marrow transplantation that has been done in type 1 diabetes also. And lo and behold, there is three of them. And I saw them because I went to Brazil, I want to see it with my own eyes. I'm as suspicious as most of you are. And so they're real people. They're bonafide type 1 diabetes patients 15 years later, they don't need a drop of insulin. Now, that is an exciting result. But we should also realize that the other 27% of the cases, other 27 cases, in time relapse, they still need less insulin. So that is promising. But it doesn't work for everybody. But I only need one case, one case where we have pure type 1 diabetes, and we can talk to the regulators, the FDA, the the sponsors, pharma, that is is not impossible.

When I was starting, I was not even used to us allowed to use the C word, the cure word. And I still think it is an inflammatory word, right? Because so many of us have been disappointed. And so many of us have given up on this. And, and I remember the talk I gave in Santa Barbara for the JDRF. And about my plans. That was a few years ago, we just started and after the talk, this wonderful old gentleman walked up to me and I said, Doctor, I've had disease for 62 years, and I thought, oh my god, I could get how much I failed. And all those years, people talked about the cure, and I thought oh, I did it again. I upset people. And then he said, but this is the first time I actually think you know what, there might be something out there, you know, so we really are getting closer, we just need to understand that the disease much better. And the new insight that it's not just an immune problem, it might not even be in the mistake of the immune system that is already making us much more focused on what the problem really, really is. And try to deal with that.

 

Stacey Simms  27:32

I want to get more to the cure language again, before we end. But when you're talking about the three people who really seem to be cured in what did you say, Brazil? How do you as researchers, and how to more researchers and more countries look at things like that and say, how do we replicate that here? Is it a question of more funding? Is it a question of research? You know, how do you share more success stories like that to see if it can be replicated?

 

Dr. Bart Roep  27:56

That is such an important question stays in the point is the first response a scab says right? I don't believe it. And that is a very healthy, very healthy default when you hear this type of thing. So that's why I went there. And I did studies with them. I said, Okay, give me those blood samples of those patients. And lo and behold, with my techniques to measure islet autoreactive T cells to ultra active T cell that we believe are causing disease, the levels of those diseases predicted so even before therapy, whether a patient would relapse or remit. So that's already pretty amazing. So that that made me think you know what, these guys could be onto something. But the reality of where most of us agree, at least for type 1 diabetes bone marrow transplantation is maybe a bridge too far. In cancer we don't. So I also think it is a little bit in the eyes of the beholder. If you have a very young child with diabetes, sometimes the prognosis of having cancer is better because we do stem cell therapy in cancer and they work and they cure people forever in cancer. So why not give a young child the same good start in life and kids do really well with these types of severe interventions, their immune system is extremely capable of recovering and for the record, we used the patient's own bone marrow right it wasn't even from a donor. So basically, what you do you take out some of the blood stem cells and then the bad part starts then we start to erase the hard disk of the immune system of the patient including the mistake that alter immune response and then we give it back the blood cells to have it recover.

I use it as what we call a proof of concept it can be done so can we now find a way that we can do it in a less risky way because certainly in in the US you have all kinds of liabilities for the record that was an American company, pharmaceutical company, that better trial in Brazil so that that's a little bit telling, but it also shows that these are Really, you know, bonafide organizations behind this investigation. So that can be done. But there are other examples that are maybe less spectacular. But there are interesting cases where we have trend started to treat with new kinds of drugs that actually treat the beta cells that have got people in complete remission. And my worst struggle, if I may, which we just published this month, is where we did still transportation for crying out loud. So we took stalls, so we, you know, poop with all the little bacteria in there, and kind of refreshed our intestinal biome, and it had spectacular impact, all the patients in the in the treated arm actually made the same or more insulin, believe it or not a year after diagnosis, whereas normally, with time you make less than you need more insulin. Sure, right. Sure. So that already shows that this can work.

 

Stacey Simms  31:00

You know, one of the things that came to mind when I when we set up that I was talking with you, one of the things I wanted to address, and you've touched on it already, and I appreciate that is this talk about cure, because in 2017, when the Wanek family made this enormous and incredibly generous donation of $50 million to City of Hope it came with a I'll call it this, because it's just what it seemed like from the press releases and everything I read a promise of a cure in six years. Well, I read that. Well, wait a second, I read that at the time. And I thought these people are wonderfully generous. But this doesn't help anybody by putting it into these terms. So I'd love to know what the you already started to answer. So I should let you go. But why do that? What kind of pressure does that put on you folks?

 

Dr. Bart Roep  31:48

You know what, let me first speak for the family. They never put those words out there. They their ambition, and it's a high ambition is a cure, right? They have type 1 diabetes in the family. And they are as disappointed as all of us that we're not there yet. So they wanted us to be focusing on the cure and do it in different ways. Because so far, it has been pretty disappointing. Okay, so that is the family's perspective. Then the other point is, you have to have an aggressive timeline, because that forces you to focus and to kill some darlings along the way, but only take the best of the best to take that forward. And that's where the six year came in. Now, I was asked disappointed with the marketing communication and journalism that says a cure in six years, because that's not the same thing. It's a six year project aiming to cure type 1 diabetes, and that has started to live a life of its own. So that being said, That being said, and that should never have happened. And I am with you, when you say don't raise false expectations, let the data speak. I'm completely with you that. But what it did do is it added the sense of urgency that we have at City of Hope to work fast. And that in itself is not a bad thing. And to put the bar high. And also make sure that you don't get distracted with some side products that might not be delivering that fast is not a bad thing, either. So I actually think it helped me pretty much to really, you know, don't take a lot of vacation and really work. Get it there.

 

Stacey Simms  33:27

The way you phrased it made such a difference to say a six year program to find a cure is so very different from find a cure in six years. So I really appreciate you kind of going through, you know, clarifying that,

 

Dr. Bart Roep  33:41

well, let's get the record straight there. And that's exactly the way it is. But having said that, I don't mind curing diabetes in six years. I just wonder why I should not do it in two years instead, you know, I mean, that it's okay to just throw everything aside and put all your energy and money and whatever into trying to do this because I was a skeptic. I honestly 30 years ago, I started to study islet transplantation to show why this was such a bad idea because basically you give the immune system new islets to be destroyed. And I unfortunate was right in many cases, but I was also wrong in some cases where it worked. And that got us the opportunity to to learn why it works, when it works and why it fails when it fails. So that was a huge leap into getting to understand the disease and understanding what is important and and what is useless. So that that's one thing. But now I'm you know, I'm reaching, you know, the fall of my career. Now I really want to cure type one diabetes and now I really want to have people to just say okay, here you go, give it six years and we'll see where it ends. And to be quite honest, two of these products were not on the shelf when we propose to the family to support us, they actually were part of the seeds of funding the capital, that allowed us to work really fast.

Normally, when you ask for funds from the NIH or JDRF, because you're being judged by your peers, your enemies, your competitors, you better be darn right and have 60% of the data before you even get a shot at it. And in this case, they just trusted me on my brown eyes to just go ahead and do stuff. And and as business people who want a family, they're the founders of Ashley furniture as business people, they understand that you can fail, but it's our obligation to fail quickly, so fast and learn from it. And of course, there are always failures. But those days are often more more valuable than some of the small successes. So So this as a model, I think has been proven extremely effective. And we the one, the one thing you have to be very good at. And that's the most difficult part is triage, you know, govern this. So you have to tell your dearest colleagues or closest colleagues, you know what that was a great try that let's try something else. Or, you know, let's move in a different direction, that is something that is the most painful thing to do. And unfortunately, that had to happen to and that's not something many of us are good at doing.

 

Stacey Simms  36:23

Before I let you go and we start wrapping it up here, you don't have a real personal connection. In other words, you don't have type one, no one in your family has type one. But I imagine that as you've been saying, for 30 years, you've been working in diabetes, you've got to feel like now you do have a personal connection. What does this all mean to you after all these years,

 

Dr. Bart Roep  36:41

I think that this has been destiny, to be quite honest. And Roep in Dutch actually means calling in a way. So there is something when I was a medical student in the late 80s, let's say I did it straight after kindergarten, I was so upset that all the therapies we gave in type 1 diabetes, were palliative care, that they treated the symptoms that didn't treat the cause. And I at that stage, and it is absolutely a true story. I thought this cannot be right, I cannot be a fulfilling doctor. By just treating the symptoms, we have to understand the disease. And that is when I started to be more interested in the cause of the disease. I must also add to this I'm emotionally incontinent. So I really could every patient that I saw, I brought back home, I could not let it go. So I will be a horrible doctor crying all the time with the base. And so probably this is a win win for everybody. But But that was the moment where I really started to say, listen, it has to be a type 1 diabetes, and everything in my life is now type 1 diabetes. So I'm always saying I don't have it, but I'm living it.

 

Stacey Simms  37:52

Well, thank you so much for sharing all of this information with us. We really just scratched the surface. I hope you can come back on as these studies progress. And you have more to report and give us an update.

 

Dr. Bart Roep  38:02

Oh, absolutely. Because that would mean that recent updates. Yes. No, no, I owe you daily. And I'm so grateful for all the patients for bearing with us and giving us the benefit of the doubt and I keep on working until we have something I won't rest before them. That's solemn promise.

 

Announcer  38:27

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  38:33

Much More information at the episode homepage, just go to Diabetes connections.com, as always, and we will link you up with much more information on the Wanek family project on the center itself. And any of the research that they're looking for recruits. If they still need our help, I will link that up as well.

So just want to take a quick moment here to talk because Dr. Roep brought it up about the coverage of the cure language from back in 2017. To his credit, Dr. Roep in the articles from back then is really trying to say what he said with me. He absolutely admits that six years is a goal. He calls it a goal, not a promise. He says if he knew what needed to be done, he would do it in one year. But he is really optimistic about the pathway that City of Hope laid out and just what he said in the interview that you just heard. The issue here seems to come from quotes directly from the one family the incredibly generous and well meaning Wanek family, the family behind Ashley furniture. So Todd Wanek had been giving some interviews at the time, and he doesn't stray from the six years will have a cure. I have faith in them. They are very dedicated to doing so. And I mean if you look back diabetes, mine has a great article on this and they say they really, really pressed on this and they just kept saying we have confidence.

So I have to say that while I get what Dr. Roep is talking about there. I think those of us who were very I'll say skeptical back in 2017 were not wrong to be I don't think it was out of line to Be and I do worry that when they set timelines like this and then do not reach them, maybe they will. But if they do not, does that discourage other people from investing in cure research. And as Dr. rib said, What cure means may vary. So look, I just wanted to circle back on that I will link up some of the articles from them. So you can see for yourself, you can certainly google it up as well. really fascinating, really great research. I mean, he listed so many things there that are happening in other countries and other theories. And it's just amazing to think about, and I'm very optimistic, but I don't like I was never told when Benny was diagnosed five years to a cure. And I think never having been told that changed our outlook and made us more optimistic. I don't know, what do you think we'll be polling about that in our newsletter? I want to learn more about this. And I'm gonna be talking about it in the Facebook group as well.

All right, let's talk about innovations coming up. And I'm a little bit on my soapbox about rumors and news and the difference. But anyway, we'll talk about that in a moment. Diabetes Connections is brought to you by Dexcom. It's hard to remember what things were like before we started using Dexcom. I mean, I haven't forgotten, but it is so different now is what I mean, when Benny was a toddler, we were doing something like 10 finger sticks a day, even when he got older, we did at least six to eight every day. I mean, they were scheduled and you know, when he wasn't feeling well or something was off, we would do more. But with every iteration of Dexcom. We've done fewer and fewer sticks, the latest generation the Dexcom G6 eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about Benny's little worn out fingertips makes me so glad that Dexcom has helped us come so far. It's an incredible tool. Benny's fingertips are healthy and smooth, which I never thought would happen when he was in preschool. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions, learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

Innovations this week, let's talk about an innovation that I think is all hype. But hey, you never know maybe it's real. A couple of weeks ago, I saw a bunch of headlines. They were mostly in the tech world hadn't made it over to the diabetes reporting. Yep, about the next generation of watches Apple Android watches that might include glucose monitors, I kind of hand wave that away. because there wasn't enough real information from these groups to even warrant a second glance, it was things like might happen could happen, hearing rumors, that sort of thing. But just in the last week or so I've been seeing more diabetes news sources, and more diabetes bloggers talking about glucose monitoring in the next generation of watches. Is this really coming? I gotta be honest with you guys. I do not think so.

What touched off this whole thing was a report out of South Korea, which I still have not seen translated into English. And as I do not read Korean, I have no idea what the report says I don't think many people who are reporting on it know what the report says. But it basically seems to indicate that the series seven Apple Watch and the Samsung Galaxy watch four will feature continuous glucose monitoring, they say no blood sampling, it will use an optical sensor, it will be advertised to people with and without diabetes, that's important. We'll come back to that. And this will be somehow infrared sensors. So look, the first thing to keep in mind is if this is going to be advertised to people who use insulin, it has to have FDA approval, you cannot get FDA approval for something like that between now and later this year. If they haven't done any clinical trials, it's not going to happen. So I can't imagine that this is something that if real is going to go to people with diabetes, somebody without diabetes, you want to kind of maybe know sort of what your blood glucose is? Sure, I could see that. But how accurate is it going to be? I mean, we really have no idea because I haven't seen any research on this. I know that there are some people out there who have been citing a long ago studies and talking about the Glucowatch, which I know some of you longtime listeners used but I covered this I covered the glucose much back in the 90s when I was a health reporter, and it burned people. So we know it's not going to be that I hope anyway, look, I'm not critical of the organization's for covering this story. I am a little miffed at the headlines, because the articles are all great. The articles are all saying that this is something that we're hearing about, we don't know could it happen, other people quoted who are saying why it can't happen and the complications and the things that I'm saying about clinical trials, but the headlines have been all this is coming these watches to include glucose monitors. I haven't seen many headlines that have said probably not or don't get your hopes up. Like it says, what would you click that I guess that's not clickbait. This is why I'm not that great at social media.

Anyway, sorry, a little bit of my soapbox here, because I think this is just setting up people with diabetes for disappointment. And before we move on from this, I should say that I saw a lot of comments on social media about that. There are several systems like this in development, you know, bio wearables that there's a lot of stuff coming like this. That may be the case. But a couple of years ago, there were a lot of companies excited about contact lenses that red blood glucose. So just because you can show me a company that is trying to venture capitalize its way into this space, doesn't mean I'm going to get excited about a new device will eventually come. Yeah, I think it absolutely will. I mean, who knew we'd be talking into our watches my dad talks into his Apple watch like Dick Tracy, if you told me that was coming 10 years ago, I mean, right? It's coming, but it's coming this fall. Outlook unlikely. Alright. It was kind of a pessimistic innovation segment, but we will bring back Tell me something good and more innovation stuff in the weeks to come.

 

Hey, before I let you go, just one funny thing during this taping, here, I heard Benny's insulin pump beeping, you do not know why. And I probably won't find out. And I got to tell you it is very weird to be 14 years into this probably the first 12 where we did almost everything for him. Yes. Even into middle school, I was doing a lot more for him than maybe the average parent. But hey, you do what's right for your kid. And I gotta tell you, it is strange to hear the beeping and know that he will take care of it. I can't believe how little I do for Benny's diabetes these days, when your kids diagnosed at two. There's not a lot of fun of independence at that age. And we didn't push him to be super independent. Although I that's kind of a lie. I mean, I say did everything for him. But when he was not at home, he could do everything. So we gave him a lot of freedom. And he was going to friends houses in first grade. He was doing sleepovers when he was eight years old. I sent him to camp and on diabetes camp for a month. So I take that back. But what I mean is when he was old, we did a lot for him. I remember checking his blood sugar, you know, he just stick his hand out when he was in like seventh grade when he was home and thinking to myself, when is this going to end but knowing because I got great advice from you guys not to push him and lo and behold, I do nothing. I do some nagging. That's not gonna change. But that beeping just reminded me a little idea. I'm here if he needs me, and he noticed that.

All right, thank you to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in just a couple of days until then, be kind to yourself.

 

Benny  47:17

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

Mar 4, 2021

Raising teens with diabetes can be very difficult, but there's a lot parents can do to make it less stressful. This week's guest has advice because she's been there. Moira McCarthy is the author of Raising Teens with Diabetes and she shares how a very tough time with her daughter, Lauren, taught her what these kids really need.

The secret? You might think it's better technology or a certain diet or even discipline, but as Moira explains, it's compassion.  Lauren is all grown up now, with a great job and a life far from home. She and Moira have a terrific relationship and she very generously shares her story to help others.

This episode originally aired in July of 2015.

Book: Raising Teens with Diabetes 

Moira's post: Freedom is their secret drug

The follow up: When your teen with type 1 becomes an adult

 

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

Join the Diabetes Connections Facebook Group!

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Episode Transcription

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of Did you know stuff?

 

Announcer  0:13

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:18

Welcome to a classic episode of Diabetes Connections as always glad to have you along, we aim to educate and inspire about type one by sharing stories of connection with a focus on people who use insulin. And with these classic episodes, I am bringing back interviews we did years ago, they are evergreen interviews that can still help people and you can really benefit from hearing these stories. But they are interviews that were done in 2015 and 2016, before the show had found all the listeners that it has now maybe that's you if you are newer, and with more than 350 episodes, you are sure to have missed a few. So this has been a fun way for me to go back and revisit some of the cool guests and great stories that we have shared.

You know, it's funny to think about, but when I started the show, I was really concerned with Benny, my son becoming a quote, teen with diabetes. He was 10 when I launched in 2015. And you can hear that 10 year old voice at the end of every show when Benny reads my tagline. It is funny looking back because for us at least Middle School, you know ages 11 to 13 were actually much more difficult for diabetes stuff than the true teen years have been so far. As most of you know Ben, he was diagnosed right before he turned two. And as you'll hear in this episode, and in pretty much every episode from that first year, I'm terrified. I'm trying to figure out a way to make sure bad teen stuff doesn't happen to us and looking back it really makes me smile because what I was actually afraid of shows how much I misunderstood the teen years with type one my guest and now my dear friend Moira McCarthy has probably done more than anybody to educate me about this and she continues to do so to this day. A longtime listeners know more I became a frequent guest we even started an ask the demon segment we are due for another one of those pretty soon.

If you're not familiar, Moira’s daughter Lauren was diagnosed with type one at age six. She's all grown up now living a very independent life with a great job in Washington DC and Moira , by the way lives in New England. They're not in the same town. They're hundreds of miles apart. But their path together with diabetes wasn't always smooth. Moira wrote one of the most widely read blog posts about diabetes parenting back in 2010. called freedom is their secret drug. I remember reading that boy. And just last month, she wrote a follow up to it. I will link them both up at the episode homepage at Diabetes connections.com. I am so grateful to Moira  and her whole family really Lauren, their other daughter Leigh, Moira’s  husband, Sean, for being open and honest about not just the good times with type one right not about the easy stuff not about when it was going well and about their community support and all the great things that they've done their accomplishments, being honest about their struggles more his interview from July of 2015 in just a moment for this is one of my first episodes. So I hope it sounds okay, I'm still doing radio stuff like introducing the guest a few times during the interview, you'll hear that

but first Diabetes Connections is brought to you by insight the breakthrough a new history of science podcast, its historical wisdom, mixed with modern insight and insight. The breakthrough was created by SciMar. SciMar is a group of Canadian researchers dedicated to changing the way we detect treat and even reverse type two diabetes. 2021, as you know, is the 100 year anniversary of the discovery of insulin. It's arguably the biggest scientific discovery in Canadian history. This series examines that moment and many others through the lens of Canadian researchers trying to find what's next for the fight against diabetes. You can find inside the breakthrough wherever you find this podcast. And you should also know that Diabetes Connections is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

 

Moira  McCarthy, welcome to Diabetes Connections. I'm so glad you could join me.

 

Moira McCarthy  4:16

Oh, it's great to be here.

 

Stacey Simms  4:17

So much to talk about with you today. We met at a jdrf event in St. Louis last year. After which I read your book. You know, I don't have a team with diabetes

 

Unknown Speaker  4:28

yet.

 

Stacey Simms  4:29

It's kind of like looking into a time machine. And if you haven't seen raising teens with diabetes that's got the best cover. There's a teenage girl just rolling her eyes. As we've all seen. I have a teenage daughter but it's my son who has diabetes and he's 10. So more what do we have to look forward to?

 

Moira McCarthy  4:48

Oh, it's just a snap. You know, agers all they want to do is please their parents. So I like to say we need the walk to cure adolescent. I think the good news Is that it really is temporary. When you're in it, it feels like it's not. But it really is a passing phase. And I think that when I hear like someone like you has read the book already, it makes me really happy. Because my hope is to be proactive and help people be proactive and kind of think ahead of the challenges you're gonna face and ways that you're going to try to work through them with your teenager.

 

Stacey Simms  5:25

I think there are things that you can do, looking forward, to figure out maybe some things to do now when your kids are younger. But take us back and tell us a little bit if you don't mind about your story and your family's story with diabetes. How old was your daughter when she was diagnosed?

 

Moira McCarthy  5:41

Sure, Lauren was diagnosed right at the start of kindergarten, right around actually at her sixth birthday. I knew nothing about type 1 diabetes and children before that. Once she was diagnosed, I realized that every single sign and symptom was right in front of my face, but she diagnosed

 

Stacey Simms  5:59

on her birthday.

 

Moira McCarthy  6:01

Well, she was diagnosed at her checkup, which was just shortly and wow. Which is very common, you know, yes, people go for checkups, then. So we were I say this with all the arrogance that that shouldn't be attached to it. We were the model patient family for a very long time. Lauren was extremely willing to just do what she had to do. I threw myself into becoming educated. She was actually the first young child in Massachusetts to go on an insulin pump in 1999, which seems crazy now because everybody can. We were progressive. And I really thought that I was the smarter mom who had it all figured out. And I would hear story about parents, with their teenagers and think, Well, I'm glad that's not us. And then I realized that I hadn't raised a teenager yet. And that no matter how hard you work, and how vigilant you are, and how wonderful your child is, the teen years can be extremely challenging and humbling. And so I learned a lot about, you know, the fact that you can't necessarily outsmart all of the challenges of diabetes all the time.

 

Stacey Simms  7:17

And as a teenager with diabetes, let's talk a little bit about that. Because my understanding is it is not just the attitude, it is the physical as well, right?

 

Moira McCarthy  7:26

There's a lot going on. It's just so unfair. I mean, think back to when you were a middle school, or an early high school kid, it's just such an awkward, uncomfortable time in your life without something like diabetes on top of it. And that's not just because of social reasons. That's because of hormonal reasons, too. And so you put diabetes on top of it, and you, you know, add to it, that it can make your blood sugar go crazy because of hormones. But you don't want to do what you have to do anyway. So who knows what it is in it. It's just a big old mess. It's a It's a challenging time, I really feel strongly that one of the reasons that I really support better technology is even if all we can do is just get this better technology to kids in their teen years. We're going to make life with diabetes so much better. I now that I've watched my daughter go through it, I totally get it. And I have so much respect for all teens, no matter how much they're struggling. I really do. That's great. And

 

Stacey Simms  8:27

you and your daughter have been very open about your story. Do you mind if I asked you a little bit more about and I don't want to put it in terms of what went wrong. But what was difficult for her as a teenager? And how is she doing now? Oh, I

 

Moira McCarthy  8:38

think it's fine to say what went wrong. Um, so what went wrong is is multifold first of all, I mentioned my arrogance, I really, really, really thought that I had it all figured out and that she had it all figured out. I trusted her so much at such a young age and put so much on her that I set her up to fail if that makes sense. Um, she actually came to me once and said you shouldn't trust me so much. And I think I just laughed at her.

 

Stacey Simms  9:09

You'd be like just trust her to check at school or things like that

 

Moira McCarthy  9:12

way. Um, you know, the old you yell into the next room, what's your blood sugar and they yell back a number. So what happened with Lauren is she she actually just wrote about this for a sweet life, I believe, where she explained when it all started. And she was at the pool at our beach club and I yelled across the pool, check your blood sugar and she went to get her meter out and just went huh. And waited a minute fiddled with it and yelled, you know, 118 or whatever, she yelled, okay, and I put it into my color coded Excel spreadsheet chart. And that was the beginning of it for her. She realized that she was trying to break free of diabetes. Ironically, she was feeling worse but in a in an adolescent mind that made sense to her. And I was I was letting her because I was burnt out. And it was pretty easy to just, you know, actually literally and metaphorically be in my lounge chair, letting her run the show because I was sick of it, when what she really needed at that time was me to at least check in on her. And by that I mean see things happen from beginning to end, at least once or twice a day instead of just trusting her to go off on her own and report in to me. And that's a funny thing, because she's a trustworthy child. She's honest, she's open. She was honest about everything in her life, except her diabetes and her blood sugar's and so under my nose, under my nose, and on my guard, my daughter went into real life true, not a joke. ICU DK. Wow. And that was when even her doctors were shocked. You know, that was when I knew I had to fix me so that I could help her get through this time.

 

Stacey Simms  11:09

That's such a hard thing to hear knowing how on top of it, you thought you were in and she was, what happened? How did she do?

 

Moira McCarthy  11:17

So at first, she dove back into doing everything great, and everything was fine. And then the struggles continued. And what I realized was, I needed to find a new acceptance or a new level of what was acceptable in her diabetes care at this point in her life. Was she scared?

 

Stacey Simms  11:42

Was she upset? I mean, what was her reaction?

 

Moira McCarthy  11:44

Well, you know, she said to me, once, someone asked me years later, I'll be honest, I went through anger, I, I wanted to shake her it's really, really frustrating. When you just want your child to feel good, and and, and do what they have to do. But what do I know, I'm not the person who was inside her head as a teen. So a couple years ago, someone said to me, ask Lauren, what the best tool is I can use with my teenager with diabetes, you know, is it is it a CGM, and I should watch everything? Is it a pump? Is it a meter? What is it? So we're driving the car and I asked her, and she thought about it for a while. And she said, I've got it, mom, I know what it is. It's compassion. And I'm like, but she said, you know, that whole time, I was beating myself up more than anyone could ever possibly beat me up. I felt like a failure. I couldn't face that I wasn't doing the right thing. I was letting myself down. I was worried about my health. So pointing any of that up to me was pointless. I already was doing that at a level you could never do. And so that really spoke to me about that makes you think about the struggles teens have that all that was going on in her head. I don't know how she was, you know, she was through all this. She was her student body president. She was homecoming court. She was star, the tennis team with all that going on physically and emotionally. It's pretty remarkable.

 

Stacey Simms  13:21

And this is a, I guess I can say a bit of an overachieving family. She's now she's now in a good way. And she is now a college graduate has a great job doing very well. How did you get from DK a to that?

 

Moira McCarthy  13:36

It was a process. I think that I had to realize and parents listening to this whose children are younger, I can't stress enough how you have to start doing this earlier is you have got to stop nagging them. Because when our voices fill their heads, there's no room for their own rational voice. And so it took me a really long time to stop nagging her and in fact, this morning, I kind of sort of wanted to nag her from 500 miles away to hurt work, but you just can't. And what happens when you stop that nagging is their own internal nag kicks in and they will listen to their own internal nag more than they will listen to ours. So I had to let go a little bit. But on the converse, I also had to make sure she was safe. But I had to have a new definition of safe while we went through this time. safe for us was not an A one C of 6.5 safe for us was not a log sheet with tons of checks in it every day safe for us was not now it would be the straight line across the CGM safe was knowing that she was never going to go into DK And all I had to do to make sure of that. And this will be confusing for parents of younger children, because they haven't experienced freedom in teens yet, all I had to do was check in and see her, do a blood check and put insulin into her body, at least one time a day. And if that's all you can manage for a period of time, they're going to be safe. And then you can work through the other things. And what worked for Lauren, she moved to a new endocrinologist, I loved our old endocrinology team, but she made a change. And her new under chronologist is very intuitive. And he treated her as a human being and not labs while working on the labs, if that makes sense. And he was the one who really cut back on what his expectations of her were. And by cutting back on the expectations, she was able to experience success and stop beating herself up as much. And then do more. Does that make sense?

 

Stacey Simms  16:04

It makes perfect sense. And another piece of advice that I've tried to incorporate that I've heard you talk about is when your child comes home from school, and again, my son is 10. You know, we all want to say first, hey, how was your day? What's your blood sugar? Or, you know, how was your day? What do you do for lunch? And how did you bolus? And I have tried,

 

Moira McCarthy  16:20

I don't really succeed,

 

Stacey Simms  16:21

I have tried to stop doing that and say, how was your day? What were your friends like, and then either later on, ask them about it or say, hey, just give me your meter. And then you know, and we don't talk about it as much as we used to, I find that to be pretty helpful.

 

Moira McCarthy  16:35

It really is I just got off the phone with a mom who reached out to me and asked if she could talk to me on the phone because she has a struggling teen, and she has an older child with diabetes. And she said that that action actually damaged their relationship to the point that she's still trying to rebuild it

 

Stacey Simms  16:54

by just simply asking about it all the time.

 

Moira McCarthy  16:56

All the time, the minute he walked in the door after school, it's such a natural thing for us to do as parents, but and I found when I first started working my way past that I was faking it. And that was obvious to my daughter because she said, you know, Mom, I know that you're asking exactly three questions about other things and just counting them until you ask about diabetes. So the answer is, and this sounds wacky, don't ask and what you said in there makes sense. You can look at their meter and get your answers, you know, and then whatever those answers are, you move on from there, don't go backwards, you know, so. But it's really hard because we care so much about this. And I think a way to try to work around it. And I talked about this in the team book is to remember that we're not raising an agency or a blood sugar, we're raising a human being. And their diabetes seems really important to us because it's such a responsibility medically and every other way. But the rest of who they are is just as important for us to nurture too. And if you can try to remember that it can help you pull that in. But it's what parent doesn't have that problem, you know, wanting to say what was your blood sugar. It's just what we do. So

 

Stacey Simms  18:20

one of the things that you and I have talked about before is this remarkable advancement that's happened in technology. I my son has used a CGM for the last year and a half. He's had a pump since he was two and a half. But using a CGM has really changed the way I look at his blood sugar. And the way it appears throughout the day, and you mentioned a concert I want to talk about is the success is success, a flat line on the Dexcom. And that is something that I have to steal myself against going for because we all want to see those super steady, wonderful numbers. But that's just not how diabetes operates, at least not my kid. And he still does very well. Can you speak a little bit to this, I don't want to call it an obsession, but this it's almost this fear of letting kids kind of go in and out of range. Because at any moment, something terrible could happen when that's really not the case.

 

Moira McCarthy  19:14

Yeah, so first of all, I want to premise that with if my daughter was newly diagnosed, and I was using these tools, I would absolutely fall into the category of wanting a straight line and worrying every time she went up and down. So I totally get it. Even though I started out this journey in a different time. And before those things, I can totally see how it could happen. But I have this wish and I just said it. I was lucky enough a week or two ago to be at a meeting with all kinds of the CEOs of all the technical diabetes technology companies. I was one of the only patient people you know, I'm a patient parent in the room. And what I said to them is we're developing these amazing tools to solve See more. But we're way behind on tools, ie faster insulins, better infusion sites, things to make things work better on treatment of them. And so parents particularly, and I would think newly diagnosed adult patients, too, are trapped in this period of time now, where they have, they can see everything, but they can't do anything about it. And they think they need to do something about it. So Lauren was diagnosed back in the days of mph and regular when you had a chart of spikes and dips, and you match those throughout the day. In other words, we knew there were going to be three mph spikes and two regular spikes, and then dips along and we matched them. So that helps you understand the ebbs and flows of blood sugars in a person. And I think that parents now who are going right on CGM, with their children are so afraid when that arrow goes up, and when an arrow goes down, that they never fully experienced those ebbs and flows. And the thing about that is, Jeff Hitchcock said it beautifully, we can raise a child with a perfect agency forever, all we have to do is lay them in a hospital bed with an IV of glucose in one arm and an IV of insulin the other arm and check them every 15 minutes and tweak it. But that's not a life. That's not a life. So I look at my daughter, and I look at what she's doing and how she's living in our life. And I look at her success, and she loves her career, and she's in her apartment in Washington, DC and she has a million friends. Well, if I match that with her line across the CGM for the past 18 years, if you only looked at that CGM line, you might be like, Oh, my God, this has been a nightmare. But if you look at her, and frankly, she's perfectly healthy, and everything's fine. I like that side of it. So as far as the fear goes, this breaks my heart. I like to call fear. Now, the newest, most frequent and most frightening and devastating complication there is in type 1 diabetes today. And I think that it is partially because the way we all communicate and are linked with one another, and you see things and hear things like you never did before. And frankly, you don't know the whole story behind everything you're hearing. And also, these tools that are making people think that you know, because your child's blood sugar is going down, if you hadn't done something, they were going to die. And I really, really, really am struggling to help find a way to change that. Because we parents have an obligation to our children to help them live a life that they embrace without fear, diabetes or not. And no matter how many times you say you're not passing that fear on to your child, you're passing that fear on to your child. So it would be nice to change it.

 

Stacey Simms  23:09

My mother always said that kids take their cues from us. So what we do and what we feel, we may not think we're modeling, but they're getting it, they're picking up on it. Yeah.

 

Moira McCarthy  23:18

And a lot of it is in language. Like, I don't think you should say, I saved my child's life again last night. Giving your child glucose is not saving their life, any more than feeding them dinner every night and saving their life because they would starve to death. It's a little more urgent. And, and, and yes, it's scary, but lows are lows and you treat them and you move on. And it's all going to be okay. And the same with highs, you know, even my daughter and the decay, thank goodness, she got to a point where she was so sick, actually, her friends intervened and said, you're going to tell your mother what's going on right now. And we're bringing you to tell her and we went right to the hospital. But there are ways to fix things and it's better. I think it's better to have your language just be okay. It's a high, it's a low. It's not good. It's not bad. It is what it is. And that way you're not passing that on to your kids. I camps have a huge problem now that they never had before that children go into diabetes camp are petrified to go to sleep at night because their parents aren't there. That didn't happen before. Wow. Yeah.

 

Stacey Simms  24:38

My guest is Moira  McCarthy, author, travel writer, speaker, diabetes mom as well. I want to talk to you about the jdrf ride to cure diabetes because my friend, I think you're crazy. You went through Death Valley on this thing. What possessed you? Why do people do this? How far is it?

 

Moira McCarthy  24:58

105 miles My friend, and not a motorcycle. And it's funny because I actually said the words out loud at jdrf national meetings, you will never get me on a bike and I will never do that ride. But I did. And the reason that I did for me, we were a big walk family, we had a big walk team like you do. We loved walk every year, we were one of the highest fundraising families in the country. And when Lauren went away to college that dissipated, which is quite normal, the culture of walk is getting people together and families and stuff and when your kids go off to college, people move on from that. And so that first year, I felt, I felt a responsibility that all this money that was coming into jdrf wasn't coming in, and that some researcher somewhere wasn't going to be able to do what they needed to do. And I had to find a way. So I thought, well, I'll try this ride thing. So I bought a bike, I hadn't owned a bike in 25 years, I had no idea how much bikes cost, Holy moly. But I started training. And I put the word out and I thought, Oh my gosh, I hope I make the minimum I chose the gold minimum, which would be $4,000 raised and I held my breath and cross my fingers and had a little faith and put the word out to my friends. And not only did I do the ride, but I raised $40,000 my first year. Wow. So what that said to me was a I guess I should have done the ride. My friends probably felt just as guilty about not having a way to support our dream, too. And see, taking that kind of action that requires tons of training and tons of work and tons of effort, on my behalf showed my friends that I respected their donations, and that I understood that after all these years, it was amazing that they would do something so I needed to do something possibly amazing for them. What is it like?

 

Really, really, really

 

good experience?

 

Stacey Simms  27:12

What was it like, though on the bike? I mean, it's just hard. It's not that's not an easy thing. You know, you have to train for a long time. You can't just jump on the bike and pedal away. No,

 

Moira McCarthy  27:19

the first time I rode, I wrote about seven miles. And I got back and I called my friend Katie Clark, who got me to ride and I'm like, I think I have allergies. And she said, Yeah, you're allergic to cycling more. Love I was and now I can tell you. It's really wonderful. You still have to train and build up. But if someone said to me on any day, do you want to go on a 50 mile bike ride? I could say Sure, sure. And I'm not like an Olympian. You know, I'm, I'm just an average person. And I found that I love being on a bike. So I got something out of it for myself, you know, you don't wear music in your ears when you cycle because it's not safe. And even though if you're with people, you're still in your own space. So it's very meditative. I can think through things. I see the world in a different way. Even my town I cycle by things that I drive by every day, and I'm like, Oh my gosh, that's really pretty. You know, I never noticed that little paths. So I feel like it's been a real gift that said ride day. You have a lot of adrenaline. It's really special because you're riding with all people who care about the same thing you care about. When I get done, the last thing I want to do is ever get on a bike again. But I do maybe not the next day, but

 

Stacey Simms  28:42

Wednesday, when is this ride?

 

Moira McCarthy  28:45

I'm doing to this year, August 13 through three states through the Midwest, Wisconsin, Minnesota and Iowa and then Death Valley is October something teen whatever that Saturday is, so I'm doing too.

 

Stacey Simms  28:59

Yep. Well, hats off to you. That's, you know, maybe I'm the person who will say now you'll never see me on a ride. And then Mike, he'll go to college.

 

Unknown Speaker  29:07

I'm gonna remind you, Oh,

 

Stacey Simms  29:10

I love it more. Thank you so much for talking to me today. And again, the book is raising teens with diabetes. And she is you can find more publications, but more writes for many publications. And we'll have links you can find out more and where to catch your columns more. Thanks so much for joining me. Absolutely. Thanks

 

Moira McCarthy  29:30

for what you do.

 

Announcer  29:36

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  29:42

More information about more of the blog posts I mentioned, you know the one from 2010. And the follow up that was just published last month on health line. I'll put those both at the episode homepage which also has the transcription and it's interesting to me listening back because I don't feel that the teen years quote. You know, our Behind us by any stretch of the imagination, Benny is 16. He just started driving and there's new challenges and with diabetes and kids, you're facing new challenges every year anyway. So I'm still listening to Moira  and calling her up and asking her my questions. But it is remarkable to look back and think how scared I was when what I really needed to be thinking about was less about me, and how can I make this right for Benny? And how can I make sure he doesn't rebel? And you know, and does what he's supposed to do? And instead, look at it through the lens of how can I support him? How can I give him more empathy? How can I give him more compassion? How can I talk to him about the tools that he needs? And it sounds very woowoo Brady Bunch, whatever you want to call it. But I can tell you having these conversations with Benny over the years, even many conversations where he rolls his eyes and doesn't want to talk about it. I mean, he's not he's far from a perfect diabetic is far from a perfect kid. But I feel like all the time I talked to him and told him, you know, we're here for you. It's your decision, we'll support you. It's not about a perfect agency. It's not about this. It's not about that. He listened. He heard us. It's absolutely amazing. And I'll say one more thing about teenagers with type one. I think sometimes it is a bit easier if you're a younger child is the one with diabetes. There's not some weird genetic thing going on there. It's just that once you see and I'll give my example here I have a daughter who is three years older than Benny, but four years older in school, because the way they their birthdays ran, when she entered her teen years, I had this wonderful, nice, rule abiding kid who started forgetting in quotes, forgetting to do homework, slamming doors, yelling at us being unhappy, changing her clothes, changing her hairstyle, doing all the things that normal teens do. But when you're first kid, your older kid is the one with type one, and you're entering those teen years, and you're seeing all those changes. I have a dear friend and this is her situation, the older kid is the one with type one. You don't know if it's diabetes, or teen nonsense, because you haven't been through it before. And I think it's really helpful to understand that the transformation is kind of a strong word. But the wackiness that happens in the teen years isn't all about diabetes. And that helped me an awful lot, because sometimes it's just nonsense. Moira  is definitely the authority on this, we are still feeling our way through the remaining teen years, maybe I'll write a world's worst teen mom in 10 years from now, when I'm looking back, I can tell you everything we did do wrong during this time. But there's lots of good stuff coming up on Diabetes Connections. We're gonna be sharing stories about mutual aid diabetes, have you seen this on social media? Who are these people? What are they trying to do? How can we help? How can we trust that the money that we're using to help in the community is going where it's supposed to go without a big organization behind it? These are some really interesting people. And we're going to talk about the City of Hope. This is a big research facility. They do a lot more than diabetes, but they have some very interesting studies. They talked about their reverse vaccine a couple of weeks ago, and they're going to jump on and give us an update. Thank you, as always to my editor john Kenneth from audio editing solutions. thank you as always 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   33:14

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

Mar 2, 2021

Right now, the very first diabetes technology with roots in the do-it-yourself community is in front of the FDA. Tidepool CEO Howard Look joins us to talk about what, if approved, will be a prescription mobile app controller: Tidepool Loop.

We get details on the submission, including everything from how you’d actually get this app to whether you’ll be able to set your own blood sugar target ranges to which devices Loop could work with, international possibilities and much more.

Learn more about Tidepool Loop 

Watch this interview on our YouTube channel 

Our first conversation with Howard Look from 2016

Howard announces Tidepool will shepherd Loop to the FDA (2018)

Howard mentioned Tidepool documents. Find those here

In Tell Me Something Good a teenager with type 1 has a big idea about a Funko Pop character and some positive news for diabetes camps this summer.

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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Episode Transcription: 

Stacey Simms  0:00

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

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:26

This week, the first Do It Yourself based diabetes tech goes to the FDA. We will get details on the submission of Tidepool Loop  , including everything from how if approved, you'd actually get this app to whether you'd be able to set your own blood sugar target ranges,

 

Howard Look  0:43

we did  in our submission to the agency proposed flexible set point. We are in review right now. That is something new, and most companies before us have submitted with fixed set points or a limited set of set points. That is something that we are discussing with the agency we're not yet cleared, so I can't tell you how that discussion will go.

 

Stacey Simms  1:05

That's Tidepool CEO Howard Look. He also answers questions about which devices this version of Loop  could work with, international possibilities and a lot more. in Tell me something good a teenager with type one has a big idea about a Funko Pop character and some positive news for diabetes camps this summer. 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 along. We aim to educate and inspire by sharing stories of connection with a focus on people who use insulin. My son was diagnosed with Type One Diabetes just before he turned to my husband lives with type two diabetes, I have a background in broadcasting. And that is how you get the podcast.

This week's subject is one that a lot of you are really excited about. I was going to say it's something that you've been waiting for. But I know a good portion of my listeners are part of the we are not waiting movement, and are using a DIY version of Loop  already. For those who are not. What is Loop ? Well, that's a big question and I will direct you to a bunch of our past episodes. With the we are not waiting hashtag you can just go to Diabetes connections.com there's a search box on the upper right hand side of the website. And I have put all one word hashtag we are not waiting as a search term for any episode that deals with that with the DIY community. Of course, you can also Google Tidepool Loop  , that sort of thing. But as simply as I can try to define it here, Loop  is one of a couple of programs created by the community. This is not something that's commercially available, and it helps insulin pumps and continuous glucose monitors communicate. DIY Loop  uses a Riley link another external piece of hardware to help with this. And it works with Omnipod and older Medtronic pumps. There are other programs openAPS Android APS, which work with older Medtronic pumps. That is a very quick and very light to say explanation of it.

So I urge you if you're interested, although Howard always does terrific job of explaining more when I do talk to him here, I just want to make sure that you understand kind of all of the groundwork, this is not something that have popped up in the last couple of months. In fact, in late 2018 Tidepool , which was well known by then as a nonprofit, open source, a call it an information hub for people with diabetes, they announced they would shepherd DIY Loop  through the FDA making it a lot easier for non diy yourself types to access what is really life changing technology. And now just over two years later, they've submitted and I don't know if an information hub is the best way to describe Tidepool , but it was started because there was no place at the time to view diabetes data in one place, I don't believe there really is still you can see data from your pump, your CGM, your meter all in one uploadable place and use interactive graphs and see trends and patterns in a way that was never available before. And I don't think it's available as robustly anywhere else. And then you can share with your healthcare team and invite other people and your healthcare providers to look at your charts and your graphs and your data. So that's how Tidepool s started.

And if you want to hear the whole story about how they stepped up to take this new task on, again, I will link up these specific episodes at the homepage for this one at Diabetes connections.com. By the way, this is also a video interview, you can check that out at the Diabetes Connections YouTube channel, I'll put a link in the show notes there as well.

I do want to give a quick disclosure here. I did a project for title in the spring of 2019. I was helping out with some research interviews in the community, that sort of thing. I bring it up because they paid me as a freelancer. And while they've never paid me for the podcast, I think it's important to always let you know about that kind of thing. By the way, I'm very good at community interviews and freelance projects like So reach out if you ever need a hand.

Okay, Howard Look in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen. And you know, almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's where Gvoke Hypopen comes in. Gvoke is the first auto injector to treat very low blood sugar. Gvoke hypo pen is pre mixed and ready to go. With no visible needle. That means it's easy to use, how easy is it, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon.com slash risk.

 

My guest this week is co host Howard book here to talk about the very exciting submission of a Loop  app to the US FDA, there is so much to talk about here. But Howard, let me just first welcome you to the show. Thanks for coming on.

 

Howard Look 6:05

Hi, Stacey. It is so great to be here. I'm so excited to see you again. And so grateful for you having me on your show.

 

Stacey Simms  6:12

Thank you. You know, it's funny to look back. And we have a lot to talk about. But I should say as we're getting started here, I have talked to you many times, but twice for the podcast and the first time was almost five years ago now. So as we go through this conversation, and as you're watching or listening, there's gonna be a lot of presumed knowledge, I think we're not going to try to explain everything. So I will link up the previous episodes where we talked about title and it's early days, and then the announcement a couple of years ago about this. But I think that even just a quick, cursory Google search will get you up to date before you listen to the interview. But there's a lot here. So Howard, thanks again. Let's dive right in. My

 

Howard Look 6:52

pleasure. Thanks for having me.

 

Stacey Simms  6:53

What did you all submit? Tell me about what actually went to the FDA.

 

Howard Look 6:58

I have learned more about how FDA submissions go than I ever imagined my whole life. So we submitted what is known as a 510 k application, which is a big set of documents that says to the FDA, here's what we have built. And here's how we built it. And here is the work that we did to show clinical evidence to show software cybersecurity, what's called verification data, how we know that the software is working as intended. It describes what it looks like, how it works, what the requirements are. And all of that ended up being about a 2000 page submission, which sounds like a lot, but I've heard that other submissions are far far bigger. So we feel like it was a well crafted submission. And we are now in the thick of what is called FDA interactive review. So we sent in our submission on December 17. Turns out that was a snow day in Washington DC. So that was our thing. So our lawyers office used a courier  to get a DVD ROM and deliver it to silver springs, Maryland. And what the FDA got was a bunch of documentation about Tidepool

 

Stacey Simms  8:14

you submitted Tidepool Loop  , this is an app, what is you know, what do you I guess we can fast forward what would the finished product be?

 

Howard Look 8:22

So Tidepool Loop  is a mobile application once it is cleared by the FDA and I have to be super clear it has not yet been cleared by the FDA It is currently under review. So it is not yet available. But once it is cleared Tidepool Loop will be a mobile application for iPhone. And people will be able to get it just like you get any other iPhone app by going to the App Store and downloading it, it will be prescription required. So you'll have to go to your endo or your doctor and say this is something I would like and get a prescription code. And then people will be able to download that app from the App Store. And what Tidepool Loop  will do is it'll connect to insulin pumps and continuous glucose monitors. And it's what's called an automated insulin delivery device or some people call it other people call it closed loop or artificial pancreas. But basically it's software that automatically controls insulin delivery based on glucose values. And based on predicting how your body is going to react to insulin and carbohydrates. And it automatically uses an algorithm or math a fancy word for math to decide how much insulin you should get. So long winded answer Tidepool Loop is a mobile app that controls insulin delivery.

 

Stacey Simms  9:40

Well, it's not long winded at all because I know there's a lot more to it than just that even But to be clear, when I think about this, and we'll go I would love to talk more about the history and DIY and and so much of that. It basically is the brains of the operation. So you have your pump, you have your CGM but you need that program. So you know, we have the controller queue we have horizon with Omnipod, if I'm getting that right used to be type zero, which we may see in other pumps, this is that

 

Howard Look 10:07

that's exactly right. There's there's three pieces to an automated insulin delivery system. There's the insulin pump, which I think most people are familiar with, but it holds a reservoir of insulin. And sometimes it's something that you clip to your belt, like a Medtronic pump or a Tandem pump. And sometimes it's a self-contained unit, like an Omnipod that sticks right on your skin. So that's component number one is the insulin pump. component. Number two is the continuous glucose monitor. And the one that I think a lot of people are familiar with is the Dexcom G6, that's a super popular continuous glucose monitor or CGM, but there are others out there as well. And then the third piece is this controller piece in the middle. And what the controller does is it reads the data from the CGM. It also takes other information such as what your insulin to carb ratio is, what your insulin sensitivity factor is, knowledge about your basal rates. And it combines all that information using math and determines how much insulin you should be getting. And what's cool about it, people living with type one diabetes are used to that and used to doing the math on a napkin to figure out what their dose should be. But what's cool about it is that the software does it for you. And in the case of most automated insulin delivery systems, it does it automatically every five minutes, which is great, because that's a lot of math, and it's doing it for you. And it's also paying attention to how your body is reacting to what happened previously. And that's why it's called a closed loop system. It delivers insulin it it determines information. And then that brings that information back into the system to determine what it should do on the next iteration of the loop .

 

Stacey Simms  11:49

And it really has been amazing. I mean, we use I mentioned control IQ. And I had no idea even though I had been told I could make you know, 300 decisions a day, one every five minutes, and then an additional one every hour. I remember the first morning I checked, and it kept Benny at like, let's say one 10th or 105. Great number I was so excited to see. And I thought oh, well, it didn't have to work very hard last night, because he was just cruising.

And I went into the pump.

 

Stacey Simms  12:12

And it had adjusted every five minutes. It's incredible. I don't know why I had, I hadn't thought about it that way that it would have to work just as hard right to keep him at that number. And it's not something that most people really have the inclination to sit there, you know, and do all day long. It was amazing to me just in a way. Howard, I gotta tell you, and you look at this as a parent of a child with type one, it kind of assuage my guilt of not being perfect all these years. Oh, yeah.

 

Howard Look 12:40

Yeah, I know exactly what you mean. So our daughter, Katie, she's 21 now but she was diagnosed with type one when she was 11. And I totally I know exactly what you're talking about, as a parent, that feeling of why can I get this right? How can I do more? What Why is this so hard? And the answer is, because it's frickin hard. It is really hard work. And these systems are taking that really hard work and bottling a whole bunch of it up into these decisions that it can make every five minutes. And even they have to work hard. If you actually look at what the systems are doing. They're adjusting insulin delivery up or down every five minutes. And they're doing their best. And it's still really hard. And so yeah, I know exactly what you're talking about, and realizing what we as parents did getting up multiple times during the night giving correction doses trying to get it right. Like we all deserve a gold star for that because it is frickin hard work. You know, and everyone living with type, of course will start to because not just as parents, like people living with type one, doing this

 

Stacey Simms  13:46

for decades, exactly with no breaks. So I have a lot of specific questions about title that my listeners have sent in. I'm cautious about getting too specific. I'm going to ask you, you may have to say can't answer that. Can you answer that? But before I do, I'd love to take a moment and talk about the significance of this being something that started as part of the DIY community.

 

I was looking back and my podcast started in 2015. But we are not waiting and started really that that same came in 2013. But people working on things like this before that. Yeah. What's the significance? As you see it, of my understanding is this is the first kind of crowdsource DIY diabetes component.

I'm not really sure what else to call it to go in front of the FDA. It seems like we should just kind of stop and mark that.

 

Howard Look 14:31

I agree. There is so much to celebrate about the story. And what you just mentioned, is one of the huge components. So Tidepool Loop is based on an open source project that was known as Loop. I usually call it DIY Loop just to differentiate it, but it was just known as Loop. And there's a wonderful medium blog post by Nate Ratcliffe, who is the original author of Loop  and he talks about how the works He did was built on top of the work that people did before him, people like Ben West and john Costik, who figured out how to control diabetes devices over wireless communication protocols. And then Pete Schwab who's the, his daughter is named Riley and Pete went and taught himself hardware design so that he could invent the Riley link, which made it possible to control at first Medtronic insulin pumps and then later Omni pod pumps remotely from an iPhone over Bluetooth. So it's this really incredible story of innovation of people figuring out how to make this happened.

There's a whole other wonderful blog post that for your technically minded readers about the reverse engineering efforts that went into figuring out how to control the Omnipod, and how to add that functionality into Loop , which at the time only could control Medtronic pumps. And so it just goes on and on and on. There's a gentleman named Joe Moran, who was instrumental, he's been living with type one for decades, and he was instrumental to that effort. And so there's the open APS community and the Android APS community, Dana Lewis and Scott Liebrand, who I know you've met. And the story is that when the community really wants to do something, they just go figure it out, it's the most it to me the most incredible example of tenacity and innovation, and grit, and everyone working together for the greater good. And all of that transpired with people just doing their thing on their own, you know, nights and weekends, or, you know, none of them all of those names that I mentioned, it wasn't their day job to go do that. They did it because they wanted to help improve lives, their own lives, or the people they love living with with type 1 diabetes. And so what we did at Tidepool is we saw how popular Loop  or DIY Loop  was, my daughter started using it when she was still in high school, six years ago, and was getting incredible results, a bunch of other type coolers. Were using it.

And we thought to ourselves, you know, what, we're in a really interesting position as a nonprofit, as an open source organization that has chosen to engage deeply with the FDA that we could take this open source project built by the we're not waiting community, and we could actually bring it into our regulatory quality system. And we could take it to the FDA and say, Hey, FDA, we actually would like to make this broadly available, we would like to put it in the App Store. And we started floating this idea with everyone with the we are not waiting community, with the device makers that would have to cooperate with the FDA, with the funding organizations like JDRF. And the Helmsley charitable trust. And across the board. Everybody thought it was a great idea. And so that was really, to me, it was just so heartwarming to know that everybody agreed, yes, this needs to happen. It can't these great systems that are helping our kids sleep through the night and helping us achieve, you know, really great, lower burden control of our diabetes, that we want to do our part to now pay it forward and help make it broadly available. So I was just I couldn't be more thankful and grateful to that entire community. So I often say we are standing on the shoulders of we're not waiting giants.

 

Stacey Simms  18:30

That's great.

All right. So now let's get down to the nitty gritty because people want to know what this is really going to look like. Let's start by talking about understanding that things change. And I'm sure that you want to work with everybody down the road, when or if this is approved. What are they approving? Is it for use with just Omni pod? I know you have an agreement with Medtronic, what starts out of the gate?

 

Right back to Howard answering that question. 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 this stuff of diabetes tasks. That's why I love partnering with people who take the load off and things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you. All the strips 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 has published Studies demonstrate high impact clinical results, find out more go to my dario.com forward slash Diabetes Connections. Now back to Howard Look talking about what devices will pair with Tidepool Loop .

 

Howard Look 19:48

So the first thing I have to be super careful because this is not yet an FDA cleared product and the FDA has very strict rules about marketing a product before it's actually available. So I'm just gonna make a statement upfront that I will probably repeat over and over, I'm going to describe the process to you that we are going through. But I'm not yet describing a product that is cleared by the FDA. And we are not yet approved to market this. So I'm what what we can do because we're a nonprofit because we're radically transparent. We share everything that we're doing with the community. So all of our engagement with the FDA, for example, we've publicly, openly published on our website. So your listeners who want to actually see what we've talked to the FDA about can go to tidepool.com/ documents, and see all of the interactions we've had over the years that I'm about to describe. So here's what I can say, openly, transparently. publicly, we have announced that Tidepool , the organization has development agreements with Dexcom, with Medtronic, and with Insulet. What I can't say is the other device makers that we are also working with, I can just say that there are other device makers, every device maker has their own timeframe about when they are comfortable talking about it. And so the first pair of device makers that we announced where Insulet, Omnipod, and Dexcom, with the Dexcom G6. And that's really notable because they have already gone to the agency, and they themselves have submitted their devices for clearance in this interoperable ecosystem. So I should if you want me to, I should probably take a little sidebar here and talk about interoperability and how

 

Stacey Simms  21:36

you may certainly take us out into what I call the Mr. Potato Head. Diabetes technology, so the floor is yours.

 

Howard Look 21:43

Super. So the FDA really gets a huge amount of credit here, because they went to industry to all of us in the diabetes device business, and they said, Hey, all y'all device, diabetes device companies, this is way too hard when you come to us with these big giant submissions for these big giant systems that include all of those components that I talked about earlier, the pump, the CGM, the controller, and everything that has to go with it. So we the FDA would like you to start thinking differently. And what they did is they issued what are called de novos, which is where they make a new product classification de novo literally means from the new and so it's a new product classification for interoperable components, and they created three different components, the eye CGM, or integrated continuous glucose monitor, the ACE pump, or alternate controller enabled insulin infusion pump and the AGC the interoperable automated glycaemic controller. So those three de novos are critical because they allow a company like us to say, hey, FDA, I'm not coming to you with an entire system that does all three things together. I'm just coming to you with one piece. So we have submitted an AGC the interoperable automated glycemic controller Dexcom submitted the IC gm Insulet submitted an ace pump and has also been talking about their future Ace pump roadmap, Tandem did the same thing. what's notable about Tandem is they submitted an ace pump and an AI AGC. So you were mentioning the type zero algorithm earlier the algorithm that is known as control IQ started its life as the type zero algorithm. So they submitted both an ace pump, which is the Tandem x two platform and the AI AGC which is known as control IQ technology, which, as you know, started its life as the type zero algorithm. So we owe a huge debt of gratitude to the agency for creating that interoperable pathway.

 

Stacey Simms  23:48

I'm going to probably ask you a bunch of questions that you will answer just like that. And I'll try my best not to know that while there is a large component of people very interested in the history, and the alphabet, the alphabet soup and everything you went through. There's also a large amount of people who say, when this thing comes out, can I slap it onto my Omni pod and use it? Yes. So the question then becomes, does it matter what type and again, if you can answer this I totally understand. Does it matter what type of pod they're using? Because we have dash we have on arrows and we don't use Omni pod, so I may be getting this wrong. And then we have Octopod, five with horizon coming out later this year. So you know, people are saying Howard, what do I stock up on?

 

Howard Look 24:31

I see. So let me so I can't specifically say what will be cleared by the FDA because it hasn't been cleared yet, but I can tell you what the intent of Tidepool Loop   is. So Tidepool Loop  is intended to be an IEC and interoperable automated glycemic controller. And in order to be that type of device, it can only work with IC GM or Ace pumps. So it will not be able to work that with anything that does not have an ace pump does it And it will not be able to work with anything that does not have an IC GM designation. Got it?

 

Stacey Simms  25:06

Okay. And then my next question is, and this comes back to I think I asked you this the very first time when you announced, you know that you were hoping to shepherd Loop to the FDA. And it's an interoperability question that I still can't wrap my brain around. I'll give you the example of Omni pod. So I'm very excited this fall, I get my Omni pod five with horizon. It's got its own hybrid closed Loop  system, or whatever they're calling it these days. And then I hear Oh, Tidepool  is out. And I want to go to the app store and get Loop . Do I flip a switch on my Omni pod? PDM? Or do I have to? Do I have to right now, because I know you're talking to interoperability in the future and everything. But what happens now? Can I switch to it? Or do I have to pick one and then stay in that?

 

Howard Look 25:47

I don't believe people will be locked in the so there is no Well, I shouldn't speak for Insulet, right, there is no switch on the PDM pods. The way pods work is they can pair to one controller at a time. But pods are disposable. So if you pair one controller to a pod, you can pair the next pod to a different controller. So that would be the idea there, there's no switch that you flip, the idea with type will Loop would be as a different kind of controller that you wouldn't need to use your PDF, you would use type of Loop  on your phone. Great.

 

Stacey Simms  26:19

I think everybody's gonna hopefully they all want to go to phone anyway. And that's what everyone seems to be working for. And I know most of my questions that are also for Omnipod. And you really can't answer them. So we will talk to Omnipod down the road and find out more. So let's go back to a bunch of questions about the targets because one of the things that people love so much about DIY, is that they can really set these target ranges for how they want and other things. Um, can you speak to that? What kind of flexibility as compared to what people understand with DIY Loop? May they experience the Tidepool Loop?

 

Howard Look 26:47

Yeah, it's a super question. The first thing I will say is, we totally understand how the community loves having the flexibility of choosing their own target range set points. And we believe in that as well. That is definitely something that type schoolers who use DIY lube, understand the value in that my daughter uses DIY Loop . I've been very public about that. We did in our submission to the agency proposed flexible set points. We are in review right now, that is something new, and most companies before us have submitted would fix set points or a limited set of set points. That is something that we are discussing with the agency, we're not yet cleared. So I can't tell you how that discussion will go. What I can tell you is the agency has been great. They have been so good. During this review. I know a lot of people like to dump on the FDA. I will not do that. Because my experience with the agency has been these are hard working really dedicated public servants that really want the best, safest and most effective solutions for the community. And the questions they have asked us about our clinical study day about how we built the product about cyber security is all completely reasonable. And so I know they are seriously considering it. And we're hoping we will know the answer to how

 

Stacey Simms  28:13

well it's interesting too, because as I mentioned kind of offhandedly. Everybody's working towards bullets from phone and control from I'm sure many of them the more I guess I can't say commercial and leave you all out now. But many of the traditional commercial systems are working toward that. Can you share a little bit how it looks on the phone? Because that's so novel for so many of us that haven't even thought about that before? Use it before in our phones?

 

Howard Look 28:35

Yeah, well, it's a little tricky. I wish I could just bring it up on screen. And what I will tell you is for your listeners that are used to what DIY looks like Tidepool Loop will look extremely familiar. There's there, you, you know, we've changed some colors and move some icons around but it'll still look extremely familiar to anyone who has seen DIY Loop  before. For folks who haven't seen what Loop  looks like, you can go to our website, there's a screenshot of the home screen. And obviously once it's cleared, we will publish all kinds of more information about what all the screens look like. But anyone who has seen DIY Loop  and understands the home screen with the glucose chart, the insulin chart with the buttons that let you bolus and do target pre meal targets etc. It'll all look extremely familiar and type

 

Stacey Simms  29:28

is it Apple and Android

 

Howard Look 29:30

we submitted only for iPhone for now. And the reason for that is DIY Loop  is only for iPhone. So the fastest path to us submitting and to getting it out into the community was to go with what already existed. That said we absolutely are committed to building an android version. We're also committed to going outside the US which is also the next question I usually get asked. And so we are a small company. We like any good small company. staying focused on one thing at a time and making sure we do that one thing well, so that one thing right now is getting it in the app store in the US, approved by the FDA, and then moving on to Android and outside the US is absolutely on our roadmap. And stay tuned. I don't want to over set expectations about when all that's gonna happen, we definitely will get to it.

 

Stacey Simms  30:21

Excellent. Yes, that was stuff. That was one of the questions. I'm curious, though, for somebody, you know, I don't even use my son's pump anymore. He's 16. I don't even see anything anymore. But I'm curious, in your studies with folks and somebody who's used DIY or your daughter is used for a long time. Is there anything different when you do use your phone as a controller? Other than convenience, I'm wondering if there's anything noticeable and different about it?

 

Howard Look 30:45

Well, I think what people report people who have been using DIY live, because no one has used a Tidepool Loop on their body yet, but people who use DIY Loop  report that the freedom and convenience of having the interface on the thing that you're carrying anyway, is really wonderful. And Loop  also includes an Apple Watch component. And I know a lot of people find that really liberating to be able to manage your diabetes right from your wrist. So I think what we've heard from DIY Loop  users is, hey, look, I've got my phone with me all the time. Anyway, I'm looking at my phone all the time anyway. It's just so nice to be able to just interact with my diabetes using this thing that I use all the time anyway. Wow.

 

Stacey Simms  31:26

So just to be clear, you can control it from the watch as well, or That's it? Yes. Okay. Yes,

 

Howard Look 31:31

cool.

 

Stacey Simms  31:32

In the clinical trials, or the testing that you had to do for the submission, what came out, I mean, there was so much kind of, I don't know, it's off the record information for DIY. But I imagine that with tight pull Loop  you really show did you have to demonstrate better control or just safety.

 

Howard Look 31:47

So this is another fascinating part of the story and how the community contributed to the success of Loop  the FDA very early on, when we started talking to them about the possibility of submitting, we said to us very clearly, we love real world evidence. And so the clinical study data that we submitted with the 510 k application for Tidepool Loop  , it's actually clinical data that came out of the Loop  observational study of the Do It Yourself Loop  community. And this is really an incredible study because it had over 1000 people in it, over 700 of whom were actively uploading data. And the amount of data in the study is staggering. As a matter of fact, the total person years or person days of study data in this study, if you take the control, IQ, pivotal study, the bazel, IQ, pivotal study, the Medtronic 670 g, pivotal study, and add it all up. The Loop  observational study of DIY Loop  has three times as much data submitted as those studies are three times as much data that's part that was collected during the study. So it's really a staggering amount of data. And we are really just overwhelmingly indebted to the community to all the people who participated in that study. And that was the foundation for the clinical evidence that we submitted with Tidepool , which is a pretty amazing thing. And I don't know that that has been done in that way before. Now, the data that is from that study has been published. So for your listeners who want to learn more, there are a couple places you can go the Job Center for Health Research to publish the paper, and I'm sure a quick Google search will turn it up. It's called the Loop  observational study. It's also on clinical trials.gov. And if you want to see the presentation that was shown at last year's attd, and Madrid right before Coronavirus, broke, or was in full swing, February of last year, that's on our website@titlesearch.org slash documents. So to answer your question, what was interesting, what was interesting is how broad the use of Loop  was, it was down to people under two years old and there were people in their 70s. There were people from all walks of life, it was just really fascinating to me, remember, this is a real world study. This was not a controlled intervention study. There wasn't a randomized control arm and people not using it. It was just observing life of people using it. And so to me that was the fascinating part is that so many people were willing to raise their hand and say, I want to help donate my data. And I'm going to show you how it works for me.

 

Stacey Simms  34:36

And we'll link up those studies that you mentioned, but I assume that they were good studies, in other words that people were happy with their agency, their time and range, ease of use safety, all that stuff,

 

Howard Look 34:46

the data, it looks great. There's some really fascinating outcomes. The way it works with the agency is only the FDA can say what's safe and effective. So we present the data to them. Here we say here's why We think it is safe and effective. But at the end of the day, the FDA is the one that gets to say, Yes, we agree. And therefore you are now FDA cleared. You know,

 

Stacey Simms  35:08

you've already mentioned this several times, but Tidepool  has always stood out for being very open source, very open with information, publishing everything that you can saying as much as you can. I am curious that now that you have gone through something like this, are you happy that you did it that way? Would you do it that way again,

 

Howard Look 35:28

so the part about being an open and transparent organization I love, I think it is a great way to go. And I know it's not for every company, there's great value to big commercial companies like Apple choosing to keep their product plan secret, and then doing a huge launch and saying, tada, here's what we've done. For us as a small nonprofit with the mission of supporting the diabetes community, I think it's a great way to go. Because it allows us to be really clear that look, our motives are not about profit, our motives are about doing the right thing for the community. And to me, the openness and transparency just makes all that completely clear. There's another part of the story, which is doing it as a nonprofit, we happen to be doing both. We're open and transparent. And we're a 501 c three nonprofit, that part is tricky. I will be honest, especially during the pandemic, a lot of nonprofits including us have been hit hard. And that's been really challenging. It is much easier for a for profit company to weather a storm, if they've got a venture capitalist willing to give them funding or they can take out a loan as a nonprofit that has been challenging. Would I do it the same way? Again, I totally would, none of us could have predicted the pandemic. So it is what it is.

 

Stacey Simms  36:47

So with your nonprofit status, if I decide after FDA approval, and I can go to the app store with my prescription from my doctor, Uh huh. am I paying for it? Is my health insurance paying for it?

 

Howard Look 36:59

So here's where we are. And I will be open and transparent about this, which is we don't know yet. So as a nonprofit, our goal is to make the software as broadly available as we possibly can. We are engaging in commercial deals with some of these device makers so that they will actually give us money when people start using lube because obviously, we're bringing new customers to them that are going to keep buying supplies and pumps and cgms from them, we would love to keep the price as low as possible. And if there's any way we can do it, we want to make it free. We're not sure we can yet we've got to project out how it's going to go we do have a we we have people on staff and we have to pay them we're not going to do it has a way of making money the way a for profit company would we don't have to answer to investors, we don't have to answer to the stock market, we would only do that if it helps us be a self sustaining organization. And it helps us continue to deliver on our mission.

 

Stacey Simms  37:59

Somebody it's fascinating to think about the questions you start asking when you start going down this road of as you said, nonprofit and open source, everything else is an on that road. There are rumblings they're not really there yet of other possibly DIY routed projects that are waiting to see what happens with you guys. Right? So if you can, it's kind of like when Medtronic gotten sick, 70 approved. And then other people said, okay, we can now take our product. And we'll probably get it through the FDA with a lower, you know, time and range without calibration and things like that. Do you think that? Is this going to be the start of a different kind of diabetes technology? approved by the FDA? Like in five years? Could we have different like, you've already mentioned open APS and different things that you've built on. I wonder if there's somebody working on something today that because of the title submission would have an easier time coming through. So I asked about three questions in there. Sorry,

 

Howard Look 38:51

I, I sure hope that this is the start of a revolution in how new diabetes technology is created and delivered to market, whether it ends up being open source projects, or it's because we've shipped like we share all of our source code, we share our regulatory quality management system openly, we will publish our 510 k submission once we get through interactive review and clearance. And we're doing that because we want to help other people. Like for us, it's a win if there's lots more technology coming out that gives the diabetes community more choice. And that allows our kids and people living with diabetes and to have better solutions that fit better in their lives. That's a big win. Like we've got no ego invested in this. I want lots of companies, whether for profit or nonprofit, whether based on open source or closed source, it kind of doesn't matter. What I want to see happen is innovation. And I want that innovation to happen more quickly and get into the hands of people who can use it more quickly. So that's the wind for us.

 

Stacey Simms  39:57

As we start to wrap up here my interaction portability questions still are out there. And again, I know that you cannot speak to different products, and that's fine. I mean, you can and that's fine too. But when I think of true interoperability, and my ecosystem is limited just because of what my son uses, but I think of Okay, if I want to use this controller, but whether it's Tidepool Loop   control, IQ, or Omni pod horizon, whatever, and I want to use a Libra, and I want to use this pump or I want to use a Dexcom. Or I want to use the Dana pump or whatever. There's, there's all these pumps, and CGM is coming to market. Are we going to see that anytime soon?

 

Howard Look 40:35

I am very optimistic that true interoperability is on its way. And one of the huge reasons we are doing what we're doing is to show that that is actually doable, you should be able to pick the pump that's right for you, you should be able to pick the CGM that's right for you, you should be able to pick the controller and the user experience that's right for you. I do imagine that there is a world where you can say you know what, I'm the pregnant mom living with type one, or I'm the athlete living with type one and I have very different needs, and the system should be able to adapt to you. And you should be able to choose which thing is stuck to your body to work best for you. So I am very, very optimistic that interoperability is happening. And we are pushing on it and we and I believe the FDA wants to tap into. That's why they made these interoperability pathways.

 

Stacey Simms  41:27

I remember when I saw one of your presentations on the shoulders of giants presentations A while ago, one of the things that people really like in addition to the the wonderful blood sugar control they get from DIY lube, they really like the icons, there's like ice cream and pizza. There's all this neat little stuff in the app Are you able to share it with you could just save any of the cute stuff.

 

Howard Look 41:48

Oh, there is a cute, the cute stuff is still there. Like I said the experience of Tidepool Loop   will look very familiar to users of DIY Loop . And one of the things that people love about DIY Loop  is the ability to use emojis to indicate the type of food you're having, whether it's the lollipop for fast acting carbs, or pizza for the very long acting carbs, and all the emojis in between. So that's something that people love about DIY Loop . And we have maintained that in in Thai polish.

 

Stacey Simms  42:22

I said it was my last question. I lied. I meant to ask you. The first time I talked to you in 2016. We were talking about Tidepool  as an a data company. Right? I want to see my data I want to free the data is that still part of the mission? Is that still something that's part of the core of title moving forward?

 

Howard Look 42:41

It absolutely is. So at title we like to say Our mission is to make diabetes data more meaningful and actionable. And seeing all your data in one place is still absolutely part of our mission. pypo web and title uploader are incredibly popular. As a matter of fact, we have about three times as many users now as we had before the pandemic started. Because when there's a pandemic, it turns out, you need a way to upload your data remotely. And so that is absolutely still a part of what we're doing and making diabetes data meaningful. actionable is still absolutely part of what we do. Awesome.

 

Stacey Simms  43:24

Well, Howard, you've been so generous with your time I appreciate it so much. Just one more thing is your how's your daughter doing? You've got you've got three kids. Yeah, one child was dying with type one. But everybody You're like an empty nester, almost.

 

Howard Look 43:37

We are an empty nesters. But Katie is doing great. Thank you for asking. She's in college, and she is doing wonderfully. I will tell her you asked about her.

 

Stacey Simms  43:48

Oh, absolutely. Thank you so much for sharing all the information. Come on back, when and I will say when you get FDA approval, and we can share lots more details. But I think this is phenomenal. I'm so excited to just kind of be part of the information stream over the last couple of years. And it's just been so much fun to follow this. So thanks for coming on, Howard.

 

Howard Look 44:08

Well, thanks for all of your amazing questions. And it's just been so great to have you been with us and sharing our story over the years and so we're really, really grateful to you and all your listeners.

 

Howard Look 44:24

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  44:30

Lots more information at Diabetes connections.com. I know you had many more questions. I got so many questions in the Facebook group for this topic. But once I went down the road with Howard, I realized there were a bunch that he would not be able to answer. Frankly, most of them were for Insulet or for the makers of Omni pod. So I reached out to them and I will continue to ask them to come on the podcast. It's been a while I think they're waiting until they get FDA approval for their next product. But I'm working on it and I hope to talk to them as soon as I can. I Know You all have questions. And boy, it's a really exciting time. I hate that the technology. And title is not an example of this. I hate that a lot of the technology got backed up because of COVID. But man, this is going to be a very exciting year or two as things that have been kind of delayed, get released, which is why I'm doing this focus on technology this year. So I'm very excited about it. And I cannot wait to see so many questions there about what the FDA actually approves. And we know Tidepool  with all of their wonderful open source and access to information we know that they will let us know. And I'll pass it along as soon as I learned anything.

All right, let's talk about Tell me something good. We're gonna have a story or two about summer camp diabetes camp, and a teenager with type one has an idea for a Funko Pop, that you're going to love. Diabetes Connections is brought to you by Dexcom. And one of the most common questions I get is about helping children with type one to become more independent. These transitional times are tricky elementary and middle school then middle to high school, you know what I mean? Using the Dexcom really makes a big difference. For us. It's not all about share and follow although that is very helpful. But think about how much easier it is for a middle schooler to just look at their Dexcom rather than do four or five finger sticks at school, or for a second grader to just show the care team the number before Jim, you know, at one point Benny was doing up to 10 finger sticks a day, and not having to do that makes this management a lot easier for him. It's also a lot easier to spot the trends and use the technology to give your kids more independence. Find out more at Diabetes connections.com and click on the Dexcom logo.

 

This is normally the time of year where people are signing up for camp. I know certainly for us, we're already our summer is planned by the end of February when my kids were younger with this both school aged kid and we both worked full time. You know I had summer programs done by this time, but of course it was COVID everything has changed. So it tells me something good. I was excited to share this week that I'm hearing about more summer camps that plan to be in person. And diabetes camps are certainly tricky, because while everybody should be taking lots of precautions because of COVID. You know, people with diabetes really need to take more precautions. So I was thrilled to find out just a couple that I'll pass along and I'll put more of these in the Facebook group. Hopefully we can get more as the information comes in. And as you learn what your local campus doing, we can share that info.

But Texas lions camp, which is the one that among other people, Dr. Steven ponder runs, they are doing something really interesting this summer, they have decided to open it up for family camp. And my understanding about this is that the whole family can come. But each family will stay in its own cabin, they will get together as socially distanced appropriate, if that's the right way to put it for activities and things like that. But within the cabin will be the family unit that's already spending time together. And so you wouldn't have to wear your mask within the cabin, you know, that sort of thing. And I think it's a really creative approach. I'm pretty sure they've had an amazing response to this. They may already be mostly filled, but you can definitely check it out. I'll put the link there. What a fun and interesting way to step up for this challenge

and camp kudzu in Georgia, which is a very close to my heart camp. I'll tell you about that. why in just a minute. But they have decided to have teen camps, family camps and four weeks of summer camp. So if all goes well, I'm sure things will look a little different, but they are going ahead with their camp program as well. And I bring up kids though, because I didn't know this for the first couple of years Benny went to camp. It's down the street from his regular non diabetes camps that I've talked about many, many times. Now camp kudzu is hosted at other camps. So it's not really their camp. I believe it's camp. Burnie it's their camp grass that they use in beautiful Cleveland, Georgia. And Benny goes to camp Coleman, which is just down the road. And I didn't realize that for the first couple years. I gotta tell you, I would have put My nervous heart at rest. To know that I was sending him away for a month and there were 100 people with diabetes down the street.

I did end up calling them I want to say was the last year Benny went so 2019 because of course he didn't go last summer. His insulin pump broke the very last day of Camp the last full day of camp. I don't know if he knocked it into something. We never figured out what happened but it just it just crapped out. And I called them to see if somebody could lend him a pump and they had their program had just ended a couple of days earlier. So he was fine. He did shots for the 24 hours before he came home and Tandem. I tell the story. By the time he got out of the shower, he came home he jumped in the shower, by the time he got out the pump was delivered. So we'd love how great they are with customer service. Our local diabetes camp hasn't made a decision yet as far as I know for what they are doing. But I'm sure that they are going to make that announcement pretty soon. So if you know what your camp is doing, you know we'll share it let me know I'm really hoping that as many kids as possible I can go back to diabetes camp this summer. But if your camp isn't having in person, I know it's not ideal. Do the virtual be part of this community however you can. It's so great for kids and for adults to certainly

our other Tell me something good is really cool. Now I am not the biggest follower of Funko Pop collectibles. I actually thought they were pop Funko which tells you all you need to know I have two in my office Actually I have Queenie Goldstein, from Fantastic Beasts and Where to Find Them from that Harry Potter spin off That's an inside joke with my family. I have Deathstroke because death strokes real name is Slade Wilson. My husband's name is Slade. So that's his funko pop and ended up here somehow anyway, all of this to say that I want to share the story of Ethan Savage. Ethan is 17 years old, and he was diagnosed with type one in September of 2019. He has a campaign to get the folks at Funko to create one of these figurines about type 1 diabetes. And if you haven't seen this, I'll put this in the Facebook group as well. But these are super popular, just about every pop culture character now has one of these. They're not bobble heads, but you know, the head is big, the body is smaller. They're very cute. And they're very popular. So Ethan has written to the company, he's got an Instagram account, he's showing them an example of what it could look like. And it's I guess it's Ethan. It's this kid, a guy. And he's got, you know, a pump on he's kind of lifted up a shirt and showing it off. I kind of say the guy looks cute, but kind of fierce, too. It's a really well done rendition of what this could be. And Ethan has been selling posters of the concept to raise money for JDRF. And he's got a diabetes educator who wants to give the figure here to newly diagnosed kids instead of as he says a lame stuffed animal from the kitchen.

 

In the letter that he shared with me that he wrote to Funko he says we're convinced this could make a great pop or series with a bigger opportunity. Most importantly, it'll raise awareness for good cause and bring you new fanatics. Haha, links below. I think this is phenomenal. I'm going to link up the Instagram account. And hopefully we can amplify the efforts here because I could see a whole line of kids with type one adults, even the celebrities that we've gotten the community Supreme Court Justice Sotomayor, what a great pop she would make. I think that'd be hysterical. I do have to tell you that one of the reasons that Ethan came to my attention is because I went to school with his dad. And it's unbelievable in the last couple of years to people off the top of my head, I can think of that I went to high school. I mean, really, I went to grade school all the way through high school with these folks, their kids have been diagnosed with three of us in the class of 1989 from York High School, have kids with type one now, I guess not that unusual, but it really brought it home for me. So thanks, Jonathan for sending this along and connecting me with Ethan and Hey, who knows what's gonna happen. If you have a Tell me something good, please send it to me Stacy at Diabetes connections.com, or post it in the Facebook group. And it's Diabetes Connections, the group.

 

Stacey Simms  52:23

Looking ahead next couple of days, we're gonna have another classic episode out for you. And that's coming on Thursday. And then we are continuing with the focus on technology have some really interesting stuff coming up in the next couple of weeks, I spoke to the people from City of Hope they've changed their name, but you probably know them both mostly by that and mostly by the claim they made a few years ago that they were gonna have a cure for type one within six years. I had to talk to them about that they have some really interesting new research going on. And I did talk to them about that claim. Because I actually think that did them a lot more damage than they should have set themselves up for to me that was a mistake. And they talked about it. They talked about why but we are almost really it's five years in now. So I'll be bringing you that story. I am talking to beta bionics the folks behind the islet damianos company about what's going on with them this year. And as I said, reaching out to Omni pod and helping to get a lot more technology stories for you in the weeks to come.

In the meantime, thank you as always to my editor John Bukenas from audio editing solutions and thank you so much for listening. I'm Stacey Simms. I'll see you back here in a couple of days until then, be kind to yourself.

 

Benny 53:33

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

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