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.

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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

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

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!

Sign up for our newsletter here

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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

18. 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

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.

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!

Sign up for our newsletter here

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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

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.

Follow the Pop Addict on IG

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

You may know Jerry the Bear as part of Beyond Type 1. But this learning and companion toy for children with type 1 diabetes got his start as a college project. Ten students from Northwestern University entered the first every DiabetesMine Design Challenge back in 2009 and won the most creative design. A few of those students continued on and – as you’ll hear – started a new company called Sproutel.

In addition to Jerry the Bear, Sproutel makes My Special Aflac Duck for pediatric cancer patients and Purrble to help children self-soothe.

This interview with Sproutel CEO Aaron Horowitz and Chief Creative Officer Hanna Chung first aired in November 2015.

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

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

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 everybody. This is going to be a fun classic episode of the show. I'm really glad to have you along. It's been fun this year to take a look back at some of these interviews. These classic episodes, as you likely know by now are from the very first year or two of the podcast. Most of them are from the very first full year of lunch. And it's great to take a look back and revisit some of the cool people that we talked to a lot of you are newer to the show, or at least haven't been here for every single one of these. What are we 355 episodes. So I'm really happy to bring these classic episodes back out with an update.

So hi, I'm your host, Stacey Simms, and my son was diagnosed with Type 1 14 years ago he is now 16 my husband lives with type two diabetes, I do not have diabetes, I have a background in broadcasting. That's how I came up with the podcast. And this episode is all about Jerry the bear a learning and companion toy for children with type 1 diabetes, you may be familiar with Jerry and I put some pictures in the Facebook group over Diabetes Connections of the group. But Jerry started out looking a little well a lot different and having different functionality. You may know Jerry has part of beyond type one. Now it's a program under them. They're helping with distribution and lots of other good stuff.

But Jerry got his start as a college project. 10 students from Northwestern entered the very first diabetes mine design challenge back in 2009. And they won the most creative design back then a few of those students continued on and as you'll hear started a new company Sproutel that continues to this day. And in addition to Jerry, the bear Sproutel makes my special Aflac Duck for pediatric cancer and purple for finding calm. I will link both of those up at Diabetes connections.com you can get more information and check them out. They are they're adorable. They're really helping kids and families who need them. And as always, you know, episode homepage will have all the details.

I did reach out to Aaron Horowitz. He is the CEO of Sproutel he's one of the people you'll hear from in this interview when I asked him for an update. And he says since this time, of course, they've added quite a few things. Most recently, they've added a continuous glucose monitor to Jerry. And they put in another software update that helps kids learn about washing their hands, and I guess washing Jerry's hands to about washing their hands more often that sort of thing. And he indicated that there is a big update coming later this year. So I will circle back with Aaron. And hopefully we'll do another interview and get some more info on Jerry. I will let Aaron explain much more about the history of the company in that classic interview in just a moment.

But first, this episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast. And the latest episode goes in a very interesting direction using the TV show friends to reveal how we really feel about scientists. I'm not sure that Ross is really the best example of this, but they they get it done. Marie Curie was an outsider in ways you never imagined sort of like Ross on the show. I really do love this podcast. It's historical wisdom mixed with modern insight with quite a few laughs along the way. Really great production value. Search for insight the breakthrough anywhere you listen to podcasts.

And by the way, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

My guests in this classic interview are the CEO of sprout tell Aaron Horowitz. And Hannah Chung, who at the time was chief creative officer had a left Sproutel in the middle of 2020. I reached out to her I haven't heard back yet. So I will post an update in the show notes when I do hear from her and let you know where she is heading. Next is really fun to kind of go back in time and hear the story of Jerry, the team's appearance at the White House. And a lot more. Aaron and Hannah, welcome to Diabetes Connections. I am excited to talk to you both again.

Aaron and Hannah:

Absolutely. As are we,

Stacey Simms  4:25

Hannah and Aaron. Let's start at the beginning. Let's start with the idea. How did you come up with the idea for a stuffed animal that kids could play with and learn from?

Aaron Horowiz  4:35

So it actually started by talking to families of kids with type 1 diabetes. We we went into the homes of bunch of these families and as we were playing with kids, we observed that they were taking care of their teddy bears of their stuffed animals as if they also had diabetes. So they were pretending to prick the the paws of of their teddy bears pretending to give them insulin injections. Some kids were even actually taking little pieces of cardboard and paper and drawing insulin pumps that they would then staple to their bears first. So it that was kind of really this this lightbulb moment for us of wow, you know, these, these kids are mirroring everything that's that's going on in their lives that they don't yet have control of. So can we bring that play experience to life? And can we do it in a way that is educational, that is comforting. But most importantly, that's really fun.

Stacey Simms  5:28

You know, it's funny, I hadn't thought about this in a long time, Aaron, but when you bring that up, my son had an Elmo doll, and Elmo from Sesame Street, and he was 23 months when he was diagnosed, and that Elmo got checked and got juice boxes, which made a mess, and got insets put on him. So it makes perfect sense that playing kind of helped these kids get through what they couldn't understand.

Unknown Speaker  5:50

Absolutely. You know, like, as kids, we roleplay so many things, you know, right, we roleplay tea parties, we roleplay you know, dressing our animals up and making weddings for them. And for kids with with conditions like diabetes, like, like Benny did with Elmo to roleplay diabetes,

Stacey Simms  6:07

when it was the idea of spread towel always to help medically and to help with play. And then you come up with the idea for type one, play? No, actually,

Hannah Chung  6:16

the reason why I started spread tell was we really wanted to work on Jared the bear so and our mission was to really bring Jerry into the hands of all kids. And from there, we realized incorporating company allows erinite to work with this full time and you know, bringing awesome mentors, investors on board to help us feel the business. And from there just talking to a lot of families talking to a lot of kids, you have realized that the application of play into health can be so many different can help a lot of people not only for kids, but also for adults and the elderly. So from there, you know, working under the beret type 1 diabetes really allowed us to see the potential into coming into, you know, like applying this to help all kids to be healthy. And you know, and have a long term vision of helping all people to use play to help them to come healthy and well. So yeah, a little little Jared type 1 diabetes really allowed us to have the vision for scratch help. That's great. Okay.

Stacey Simms  7:15

So Jerry has changed quite a bit. There is a new Jerry right now still loyal to that wonderful idea of learning through play. But tell me about the first Jerry, what, you know, what did Jerry look like? And what did he do Aaron?

Unknown Speaker  7:30

Yeah, so well, I'll say that there are, quote unquote there two first Jerry's. There's the first Jerry the bear prototype. And then there's the first bear that we shipped. And I have a real soft spot in my heart for the first jar, the bare prototype. So I'll just touch on that for a second. Our first bear that we ever made, was when Hannah and I were still in school, we had no idea how to solder how to make a circuit boards, even even how to sew a bear. And so we were learning everything as we went along. And what we created I'm staring at it now in our office is like a two foot hard chested like behemoth of a bear eyes that we cut out of a Furby so that it blinked its head was attached to its body with with actually with metal nails. It was it was quite creepy looking. And we had made so many mistakes about our understanding of type 1 diabetes, because at that point, we didn't have kind of the intrinsic knowledge from the community. So for example, when we tested with our first our first user, Gerry's blood glucose level was only two digits. In fact, his screen was only two digits big. And actually, this, this little boy said, I would be hypoglycemic and go into the hospital. That was my, like, face total facepalm you know, we had missed the mark. But it taught us so so much about one, just the immense amount of knowledge that we had to learn so that we can then create something that actually had an impact. But it also showed us that despite the fact that Jerry was big and clunky and looked super scary, this this child was still really excited by the fact that there was a bear that also had diabetes. So that's, that's our technical for our first Jerry,

Stacey Simms  9:08

I'm looking at the timeline you recently posted on Facebook, and I'll link this up at Diabetes connections.com if it's okay, is that the first Jerry the one that's really big and kind of light colored all the way on the left? It is He is creepy looking

Hannah Chung  9:22

at that photo, because the girl is so cute, it makes the photo look really cute. But the bear itself is just take out the little kid part is kind of not that cute.

Stacey Simms  9:32

But I it's fabulous to see where you're going. I mean, even then, you know, this is a toy. This is a really sweet idea. And then it's changed. It was um, it became a little smaller and a little bit more responsive, I guess is what I'm looking for at least it had three numbers for the blood glucose.

Unknown Speaker  9:50

Absolutely. Yeah. So it got a lot more responsive. The bear that we ended up shipping. Really we went we had gone through 29 different iterations of product Type and the real difference between some of our early prototypes. And what we actually ended up creating and sending out to families was that the existence of a storyline. So the jury that that kind of existed in the world for the past few years, it has this curriculum with I say curriculum, but I mean animated storybooks. It's got 21 animated storybooks, where you train Jerry for the all star games, which are kind of like the Olympics. But the sports are things like climbing trees and diving with sharks. And we teach about diabetes skills, because each of these storybooks jargon meets up with a new friend like love with a monkey or George the vegetarian shark. And they teach Jerry about both a sport and a diabetes skill. So what we ended up sending out had this kind of all of these storybooks and the way that you unlocked the storybooks was that you had to care for Jerry correctly. So there's kind of this game mechanic that's built in where children are not only caring for Jerry, who, by the way, has a blood glucose level has fingers that you can prick to check, check that foods that you could swipe over his mouth and insulin injection spots. They're not only doing justice, what they did with their stuffed animals or with their Elmos, where they're mirroring all of their all of their care procedures. But they're doing it to unlock these the storybooks, which for them are kind of the carrot and the incentive at the end of doing this. But for us, that's that's really the way that we can convey some of the really complex things that that you need to learn.

Stacey Simms  11:23

That's really interesting. So the new iteration of Jerry, you've expanded from just type one, as Hannah mentioned a few moments ago, you're really trying to work toward overall good health. Hannah, tell me what's new about Jerry this time? Yeah, it's

Hannah Chung  11:38

a new Jerry. A couple of things. He's cuter, smarter, and with a more affordable price point. So the biggest thing that has changed is around this curriculum. So one, so the new Jerry, his base curriculum is around general health. So he touches social emotional development, nutrition, exercise, sleep and mindfulness. And from there families can customize Jerry to have a condition like type 1 diabetes, or food allergies, and yours were modular. And and it kind of allows families to kind of customize Jerry to mesh their own child. So you know, we can't so that we can build a world where everyone can have a Jerry but not all, Jerry is the same, which is really cool. And the way the new drivers interaction wise, Jerry had a belly device called a portal is kind of like a window to see what's going on in Jerry's world. So using this portal, you can kind of scan Jerry's brain and different body parts like the mouth and his stomach to see what is going on inside. Similar to the first year of the bear, you can still feed him, you can see how he's feeling. But if having the portal be detachable from the body, it kind of allows more physical movement for a child to interact with Jerry, which is really nice. And New Jersey also washable, which is a huge feedback that we've gotten from especially for educators, you know, if you want it to be used in a hospital setting, and washability is a big part was but we're wipeable with Clorox and things like that. Now this new Jerry is washing machine washable, which is really exciting. And

Stacey Simms  13:09

yeah, that is because who would think of that, but but you absolutely if you have somebody who's using it in a in a healthcare setting in an office or a hospital, or you know that Elmo went in the washing machine a million times because they get kind of gross.

Hannah Chung  13:21

Yeah. And then lastly, some of the looks of Jerry has changed. So the previous year was really cute. But we knew that Jerry could be the first Jerry was more geared towards kids who are younger, like five year olds, and now the New Jersey we want to help our age, the target age we're looking after is between three and four and nine. And even though that might be only a five years difference, it's a huge difference in the kids role and what kids can understand what kids are interested. So what we've done is we design a character that could be more appealing for all kids in that age range. So Jerry looks more expressive. And Jerry kind of have this longer arms like a monkey arm which I really love because he's more huggable. And so all in all, from design to interaction to the modular aspect of the curriculum has been the biggest part for us for ended up in designing the new dairy that we have.

Stacey Simms  14:17

Aaron Talk to me a little bit about food allergies, there are so many health conditions, unfortunately that affect kids. Why? Why did you move to include allergies?

Unknown Speaker  14:28

Yeah, when we look at different conditions that that kind of might be able to be addressed or to be helped out with with Jerry, we look at kind of two factors. One is the emotional implications and the other is the educational implications. And so food allergies very similar to type 1 diabetes, there's there can be unfortunately a lot of stigma for example, things like the peanut free table we've heard a lot of horror stories from families of isolation cause from eating at school. or children not understanding or really believing that other children have food allergies. So there's this whole kind of emotional and emotional coping component, which we really feel that Jerry kind of provides some of the biggest impact there just because of the comfort, because of this mirrored care that they have something else that is someone else. That's, that's just like that. And then the second is, is the educational component. And that really boils down, you know, for kids with food allergies, it's things like reading nutrition labels, and also very similar to diabetes and knowing how to articulate how you feel, and knowing when to to go and ask for ask an adult for help. This is really kind of universal across a lot of conditions. But you know, particularly in food allergies, there's every label or every piece of food that you put into your mouth, you're going to want to read the label, you know, see if it has whatever your allergen might be. And there is kind of this also really interesting correlation with, you know, an action that's tied in with mealtime, right. So for diabetes, you might be checking your glucose level and, and taking insulin for food allergies, you're doing it around mealtime, you're reading these nutrition labels, you're making sure that you're sitting in a place that's allergen free, you're making sure that the people around you don't have allergies, you you need to have washed your hands to make sure that you didn't touch anything. So there's all of these just kind of procedural things that we see a real alignment in the value that that we've seen Jerry provide for children with type 1 diabetes already.

Stacey Simms  16:26

And so far, how has it been? I know you've just put it out there. And you've been part of the diabetes community for a few years, where you've been very well received, how have you been received in the allergy community?

Unknown Speaker  16:37

So we've certainly had parents that are incredibly excited. I'll say this, we're kind of stole almost as funny term, but like making a name for ourselves in the food allergy community. We haven't yet gone to a conference dressed as teddy bears.

Unknown Speaker  16:50

Yeah,

Unknown Speaker  16:51

wait, what we did things like children with diabetes and ADHD,

Stacey Simms  16:55

I should stop you and say, This is how I met Hannah and Aaron a few years back when they were dressed like Jerry, the bear at a conference, which was so much fun. And you definitely had to stop by and talk to them to find out what was going on. So yeah, you need to go to food allergy conference and do that.

Unknown Speaker  17:11

Absolutely. That's kind of I think that that's how I think about kind of putting a stake in the ground. Moving into moving into new territory, we got to Don the bear suits, we got to go to a conference and maybe have a dance off with another mascot.

Stacey Simms  17:25

But But have you have you had any feedback from parents of kids with food allergies yet?

Unknown Speaker  17:29

So absolutely. So before we ever kind of decided to move into that into the food allergy realm, we actually interviewed, gosh, a range of families, a ton of families, and the people that we talked to were, you know, ecstatic that we were creating something for food allergies, and actually told very, very similar stories to the families that we had originally interviewed of kids with type one, that their children would pretend that their stuffed animals had a peanut allergy or a shellfish allergy. And they would pretend to have them go into anaphylaxis and give them an epi pen. And so we really saw this this need being presented and are excited by kind of the their excitement for for Jerry and and of course, it's jury's not out in in the world alive and kicking yet for kids with allergies. So we won't see kind of the rubber really hit the road until about june of 2016 when we're when we're shipping these bears, but the excitement is really good to see. And Hannah,

Stacey Simms  18:22

Aaron talked about the modules and the storybooks. To unlock the original Jerry Is this the same idea with the food allergies as well,

Hannah Chung  18:31

very similar. And so kind of similar to type 1 diabetes, you know, in the way we teach type 1 diabetes is around talking about your feelings and having a vocabulary, practicing the routines to help you you know, the daily routines you have to go through. And we also have different storybooks, I've touched upon social situation that you need to know to kind of apply the concepts that you have learned in the different social settings. It's the same framework, but that was more geared to the food allergies. So checking your blood sugar level and giving insulin might be around washing your hands, it also gives me an epi pen and you have the allergy reactions of seeing how your stomach is doing and how your body parts are having whether you have hives or not. that's similar to you know, seeing what is going on in Jerry's pancreas. And we still teach the same vocabulary. Similar vocabulary is to kind of explain how you're feeling what kind of symptoms you are having at that moment. And the same thing, storybooks around birthdays or Halloween trick or cheating and things like that, that touches upon the social emotional situation that kids need to know.

Stacey Simms  19:30

You know, I probably should have asked this at the beginning of our interview, but I want to make sure to bring this and you both have a personal connection to diabetes. And Hannah, could you talk a little bit about yours you have diabetes in your family?

Hannah Chung  19:42

Yes, I do. So both my father and my grandparents have type two diabetes and they were diagnosed in their 40s and 50s. Consider late onset. Both my grandparents passed away from the complications behind type two diabetes such as heart attack and hypoglycemia shot. To be honest, I was so young at the time. When my grandfather passed away, which I was in sixth grade, and I did not know anything about type two diabetes at that point until he, I saw he passed away, my dad a year after he was diagnosed, and he decided to change his whole lifestyle to exercise more and walk 15 miles without taking pills to really adjust his lifestyle to be healthy. And from the process. Of course, I saw him, you know, feeling frustrated and feeling isolated when he did everything possible, right. And his blood sugar level was not nice at the end of the day. Yeah. So from that, our whole family decided to change our diets too, because my dad had to support my dad emotionally to make sure he's getting the cheers that he needs to go power through the day. So two months after my dad lost about 40 pounds, and even 14 years today, he's still practicing the same routine, which is really amazing. Oh, yeah. And from the process. And you know, not only I learned so much what type two diabetes, but also the importance of having the community around you who can support you, and, you know, cheer for you regardless what the outcomes were. So from there, I just learned a ton about the people who are affected by this kind of cut credit conditions and want to help kids to help support them to

Stacey Simms  21:16

Wow, what a great story of family support that you were able to really rally around him and help out and proud to be still in that routine. All these years later is fantastic. That's great. And Aaron, your story's a little different. But you know what it's like to get injections. Tell us about that.

Unknown Speaker  21:31

Yeah, so when I was a child, I had another type of endocrine condition is called human growth hormone deficiency. And so basically, my, my body wasn't producing growth hormone, at least at the typical rate. And so for a period of time, my childhood, about five years or so i, i self administered injections every day to grow. So definitely, definitely taught me a lot and gave me a lot of empathy for kind of any type of chronic condition. And, you know, certainly, certainly a learning curve, I'm so inspired by kids with, with type 1 diabetes, because they were diabetes, like a badge of honor. And for me growing up, I felt so self conscious about this, it was something that I tried to hide from everybody. And in fact, I don't think I told anybody until I was writing our first grant application, or, you know, contributing to that for Jerry to bear. And so I'm continuously inspired by the kids that we meet with type 1 diabetes, and now with with food allergies, and kind of how much confidence and how empowered they are. And so I'm so excited about what we might be able to do with Jerry tea to enhance that even further.

Stacey Simms  22:39

You've mentioned a couple times that you were in college, and you were students together, when this all came up. How do you I mean, I was in college, I didn't have any big idea like this and change the world and help families. How do you do that? Where do you like 19 years old, and you're sitting around one night, everybody else is playing beer pong. And you're like, oh, we're gonna we're gonna make this huge thing. How did that happen? What are you both majoring in? And and how did the idea come about at that time,

Unknown Speaker  23:03

so I'll say, it started very, very small. Hannah actually co founded a nonprofit organization called design for America, which is all about using design thinking, to solve problems in your local community that have some type of a social impact with the potential to scale beyond. So lots of lots of boxes to check, but really, really exciting organization. And it's totally extracurricular. So there are teams, kind of interdisciplinary teams that are formed that go out in your free time after classes to go try to solve problems, everything from you know, sanity, sanitation, inside of a homeless shelter to things like type 1 diabetes education for kids. And Hannah and I kind of rallied around this problem while we were in school, and kind of through this through this extracurricular, these activities, we slowly but surely, pursued, pursued Jerry in it, you know, at first, we never had these grand intentions of starting a company, right? This was this was a passion project. It was, oh, let's make one prototype and see what happens. And it was like, oh, maybe we should make a second one. That second one looks kind of cool. And it reached a point at prototype number three, when I was like, Well, you know, like, all of our time is kind of going into making these bears and he's just classes aren't quite as interesting anymore. Why don't we Why don't we start to make these bears full time. And so it really, you know, is a was something that was just a passion of ours that spiraled out of control and into awesomeness.

Stacey Simms  24:36

That's great. And it sound right to you. But you both did graduate, right? You didn't just dump the dump the school and go off to do the bears.

Hannah Chung  24:43

We did graduate. We did. And we physically left a little bit early. And so Aaron and I both graduated in spring of 2012. And the last quarter, we moved to Providence. We've been displaying Northwestern in Chicago. So we are taking our classes over Skype, being in Providence working very full time. So there was a pretty awesome journey to do that. But it was cool because we have, you're very transparent about how you're billing Jerry and the type of mentors you're working with. So the school was very supportive to let us continue Jerry in a really unique method that any of our other students were doing. So I think having this approach was really great. And they did mention that we have to be highlighting us doing, you know, going through this route, we have to come back to graduation in person to get our diploma, which was not a bad deal at all. Um, but yeah, to your question about what we have studied, and I studied mechanical engineering with the emphasis on Human Centered Design, but I was a very, very weird engineer, where I was not too excited about bolts and nuts. And I loved illustrating and an animation. So in mechanical engineering, we do a lot of like computer aided design. And for me, that was just illustrating in 3d for a product, which is super fun. And I also have done some research around how to build products that is emotionally appealing for kids. So I was part of the research for for a little bit while I was a student, so I was a very a soft hearted, more, you know, I love people type of engineer in the group. So and Aaron, do you have Aaron, Aaron has a cooler major than I do. So we were both studying mechanical engineering, and then in our senior year, and, you know, throughout he and Jerry, Jerry, like Aaron really got excited about robotics. And he found that that's the area that he's really passionate about. So he ended up making up his own major called mechatronics, and user interaction design, which really helps people how to play with robots and different creating different robots that is really engaging with people. So that's a major dead air and creators. So. So that's our that's our backgrounds and what we have studied so far. Wow,

Stacey Simms  26:57

this story just gets cooler and cooler. And then, and then, in 2015, this year, you guys went to the White House? How did that happen? Aaron, tell me about meeting President Obama. And he's holding Jerry the bear.

Unknown Speaker  27:12

Oh, man. Yeah, I think not. Not in my wildest dreams. Did I ever think that was gonna happen?

Unknown Speaker  27:17

Same here.

Unknown Speaker  27:19

So we had, we had gotten a very mysterious email that they were putting together an event at the at the White House to honor it was called the first ever White House Demo Day. And it was to honor entrepreneurs from from diverse backgrounds, mainly companies with founded by either other women or people of color. And so we know the first step is a phone interview. And I was super nervous. And I was actually at the time on a on a bus, mega bus from New York to Providence. And so whispering into the phone, I delivered our little pitch and hung up and just like facepalm once again, because I was like, oh, man, like, that was probably the worst mistake I ever gave. I was like whispering on a Megabus. And about maybe a week before the event we were we were told that we were selected. And so had an eye or dancing around the office, we're so excited. And just a few days before the event, we got a call from from it from an unknown number. And the voice on the other end was somebody that was that was putting together the event and they said, Hey, we had this crazy idea. Can you can you program Jerry the bear? We were like, yeah, like, you know, that's that's what we do. And they're like, Can you can you make Jerry wish President Obama Happy birthday. And we were we looked at each other. We're like, yes, like, we can do it.

Hannah Chung  28:42

As a team, we're just a guess. Do we have to say yes to and we'll figure out the rest afterwards.

Unknown Speaker  28:47

And so we we they said they couldn't guarantee any anything would happen. We put together Hannah made an awesome little animation of President Obama dancing with Jerry. We had two different voice recordings. One is Jerry wishing. The President just happy birthday. The other was Marilyn Monroe singing Happy Birthday, Mr. President. We sent those to the communications team and they totally nixed Marilyn Monroe.

Unknown Speaker  29:11

And so

Unknown Speaker  29:13

they come to me and we go to the White House, and they were about 32 companies. We weren't sure, you know, up until a few minutes before that we would actually get to get to meet the president. But luckily, there were, I believe six companies that that have the 32 that that got him to meet him. And we were one of them. And we were just ecstatic. We're like looking at each other and they're sending out aids to us that are saying, Okay, give us your pitch. Like we're there, you know, making sure that it sounded good and that we weren't gonna say anything because it was televised. We're gonna say anything that was politically incorrect. And to be honest, I'll give I'll give my perspective on the actual meeting and I'll let Hannah share hers. Everything went by and like just such a surreal blur. And I think actually the most memorable thing for me was, you know, I we kind of split split up our presentation into Can I introduce what we're doing had a carried on and talked about the impact and give a demo of Jerry, and President Obama was standing in the middle of us. And so after I kind of finished talking to him, he was interacting with Jerry. And so his back was turned to me. And all I kept thinking is how close is too close to stand? So I was just like I was trying to lean in, and I was the entire time. I was like, the thought going through my mind and like, oh, man, how close is too close?

Unknown Speaker  30:31

tackle you.

Unknown Speaker  30:31

Exactly.

Stacey Simms  30:33

And what was your perspective?

Hannah Chung  30:35

I think for me, I remember I'm kind of going along with lo and Aaron's point, you know, up until we got the confirmation that we were meeting the President, we'd never really gotten the confirmation that we're meeting the President, it was more of a higher chance to meet the president. So an hour before when we were pitching it, I realized, you know, I never gave a picture president and Aaron, I have not practiced anything about this pitch. So it was either gonna go really authentically well, or we don't. But I realized, because I was holding Jerry, I felt less stressed because I was holding a teddy bear in public and Jerry was kind of absorbing all of my nervousness from my belly to tears comforting companion, so and I felt less nervous because I was holding a teddy bear. But uh, even the demo was really cool. And I was, like, part of me was, you know, speaking really well, explaining Jerry the bear, but also just making sure that the demo goes really, really well. And there's no mistakes. And but yeah, overall, it's similar to Aaron. Everything went by so quickly. And afterwards, it took me a couple of hours to really realize, Oh, yeah, like, we just met the president. And he really liked he was impressed with Joe the bear like that. That really happens. They took it took me like a good six hours to really digest that. Oh, that didn't really happen.

Stacey Simms  31:52

Did he wind up during the bear sing? Did you get him to sing the song?

Hannah Chung  31:56

He did? And the President? Really? Yeah. He was laughing. He was laughing and he really liked it. And but yeah, but the the aftermath is really cool, though. So you know, after the event, all this articles from a lot of different big press channels are coming out. And they actually used our photo with the president and with Jerry as a main photo for almost all the articles. And so from there, we had a huge exposure about the bear and, and that was really helpful for us. Because not only, you know, we got to represent our company as one of the startup companies pushing the diversity in tech force, but also got built a lot of awareness about kids health and what Jerry does in the community. So it was a it was a very awesome event.

Stacey Simms  32:41

That's amazing. I do love the picture. We'll link that up as well. So you can you can see it at Diabetes. connections.com. Hey, before I let you both go. I have to point out we did meet a couple of years ago at friends for life when you guys are dressed up like the bears. But it turns out Aaron and I have a crazy connection. We both went to the same high school. Different years as you heard him say he graduated college in 2012. You both

Unknown Speaker  33:05

both have the same teacher.

Stacey Simms  33:06

Yeah. We have the same favorite teacher from high school, our social studies teacher, Mr. Fagin. How crazy is that? Aaron?

Unknown Speaker  33:13

Oh my gosh, it is wild. I remember, the most of the fondest memory I have of Mr. Vega was that he would wear a different sweater to class every day of the year. That's so many sweaters.

Stacey Simms  33:28

And we grew up in New York. So he needed this sweater. So it was cold. But he was I mean such a great teacher and I took his AP history classes that would you took.

Unknown Speaker  33:35

That's exactly what I took. And it was what it was one of my favorites. My sister took it and she was that was, you know, the thing that she said was, you know, you got to take Mr. Fagles history class, I was like, Okay, yeah, I didn't know what I was getting myself into. But I knew it was gonna be good.

Stacey Simms  33:47

I love it. Thank you so much for joining me today for talking about Jerry the bear. Is there anything else that you wanted to make sure to mention before I let you go,

Unknown Speaker  33:55

we're so thrilled to have had for the past couple of years, just the immense support of the diabetes community in the diabetes online community. It's, it's really alarming not alarming. It's It's comforting. It's It's awesome to feel so welcomed as outsiders coming in so quickly. And I don't know if I can relate a similar experience any other time in my life. You know, the first time we went to friends for life, it was literally like we gained a new family. And so I think we're both so incredibly grateful for that and, and so excited to kind of keep all of those all of those relationships as we enter this next chapter of Jerry's life.

Stacey Simms  34:33

That's fantastic. Thank you so much for joining me, Hannah and Aaron. I appreciate it and I can't wait to see what's next. Thanks.

Announcer:

You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms  34:50

More info on Jerry and Sproutel and what's next for all of them at Diabetes connections.com. I will link up some articles that take a look back and others that do take a look. forward because as I mentioned, Sproutel has several other projects that they have been successful. And it's really remarkable when you think about the the start that these guys got when they were I can't call them kids anymore when they were in college and launching something like this. And now to have it not only succeed with one product, but others and really rolling along. It's a remarkable story and I'm really excited that I got to meet them in those bear suits way back when.

All right, our next episode coming out on Tuesday of next week, I am scheduled to talk to tide pool very excited to get back on the technology news. We are doing a deep dive into technology all this year on the show and title has submitted loop to the FDA. So will this be the first Do It Yourself routed initiative to get FDA approval in the United States. We'll talk about it and that episode is coming up on Tuesday. Thanks as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I will see you back here on Tuesday. Until then, be kind to yourself.

Benny

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

As the COVID vaccine roll out continues in the United States, many people with type 1 diabetes feel like they’re in danger of being left behind. Why is this happening and what can we do about it? Hear from long-time advocate Paul Madden. He's lived with type 1 for almost 60 years and he's been fighting for the rights of people with diabetes almost as long.

Stacey & Paul talk about what the science says about COVID and all types of diabetes, why the priorities are different state to state and what we can all do to be better advocates.

JDRF COVID Vaccine statement/info 

ADA COVID Vaccine statement/info 

In our Innovations segment this week,

preventing type 1 in the tiniest possible patients.. a new European study on babies

and a new study about closed loop and kids.

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, as the COVID vaccine rollout continues here in the United States, many people with type 1 diabetes feel like they're in danger of being left behind. Why is this happening? And what can we do about

Paul Madden  0:40

The science is very clear that type one is comparable to the risk of type two diabetes, if you should happen to get COVID. And I would say make sure your governor's office knows that make sure the Department of Health knows that because we've got to change this and the science is clearly there.

Stacey Simms  1:01

That's longtime advocate Paul Madden, one of many leading the charge to get people with all types of diabetes higher up in the vaccine priority lists in every state. We'll talk about what's going on here. And action we can all take

in our innovation segment this week, preventing type one and the tiniest patients, a new European studies looking at babies, and another new study this one about closed loops and kids. 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 by sharing stories of connection with a focus on people who use insulin, my son was diagnosed with type one more than 14 years ago, he just turned 16. Recently, my husband lives with type two diabetes, I don't have diabetes of any kind. But I have a background in broadcasting. And that is how you get the podcast.

And longtime listeners who have heard me say that over and over again, know that over the years, this podcast has evolved, you know, where I used to focus only on type one. And then I got a lot better educated, frankly, about the strength of the diabetes community overall, and learned that a lot of people with gestational or type two or other types of diabetes, listen to the show because of the focus on insulin use and the technology and a lot of the research. And it's topics like this one that I'm focusing on this week that really drive home, how much we have in common and how we need all hands on deck the entire diabetes community when we're talking about something like the COVID vaccine, and getting priorities in order. So I'm thrilled that our focus has kind of widened out over the years. And it's thanks to a lot of better education by listeners, you know, like you talking to me about the needs of the community. And I think people like Paul Madden, and you'll hear more about him and his advocacy coming up, really drive home how much we all need to stick together.

I also want to point out if you don't already know in our Facebook group, Diabetes Connections, the group, we have an ongoing discussion and some posts about what is happening state to state I've asked people to share from their state health department what is happening where they live, so that if you want to check in, and you're not exactly sure where to find your prioritization in whatever state you live in, you can pop into Diabetes Connections, the group on Facebook and find that information out pretty quickly. And if you know the right website and your state, please come in and add it.

I have to tell you about something that happened in North Carolina recently, and this became a mainstream news item where I live in North Carolina. And this was a billboard that went up I will share this in the Facebook group. And it was a billboard that went up I believe in late January. And it said Governor Roy Cooper, our governor here does not consider type 1 diabetes an underlying health issue. Think about that. That's what it says on the Billboard in late January when I believe this billboard went up. Type 1 diabetes was not considered a priority for vaccination in North Carolina. That has since changed, but a lot of people garnered a lot of attention. This billboard went up in Johnston County, which is in the eastern part of the state. It's kind of Southeast Raleigh. I don't know if it's deep enough east to be called down east, as we say here. It's not quite toward the beach or that area. I believe there is an Ava Gardner Museum though, in Johnston County. That's kind of its claim to fame. As far as I know. Please don't correct me on that. You can you can correct me if you want on that. Send me your Johnston county emails, but really interesting stuff that somebody paid for it. The billboard company was contacted by the media outlet that did the story here was a Raleigh TV station and they said this isn't an anonymous person who bought the ad space. All I know, they said is what's in the message. But since that billboard went up, and I think it's still up, things have changed. People with type one and type two are now in what they're calling group four here adults at increased risk of severe illness. As of this taping, I'm taping this on February 19. We are on group three frontline essential workers so Hopefully we will get to people with diabetes and others with severe illness who are under the age of 65. And don't fit the other groups pretty soon. I don't know, maybe by mid to late March, but it is really a moving target.

And I think that's important to keep in mind as you listen to this interview. And you think about this discussion. I talked to Paul this week. And as I am taping on the 19th, everything he said, is still in effect, but it could change by the time this episode is released, which is February 23. So if you're listening to this live on that date, I will post on social media if things change and of course, come visit the Facebook group to find out more of what's happening in your state. I'm optimistic that type one is going to move up as people get better educated and advocacy steps up across the country. But you know, it is a moving target like much of the vaccinations across this country.

Alright, Paul Madden, and what you can do coming up in just a moment, but first Diabetes Connections is brought to you by Dario. Health. You know, one of the things that makes diabetes management difficult for us. I mean, that really annoys me and Benny, it's not really the big picture stuff. It's the little thing that's all the little tasks adding up. Are you sick of running strips, do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to my dario.com forward slash Diabetes Connections.

My guest this week is probably one of the busiest people in the diabetes landscape that you will ever meet. He really has. I don't think he's done at all. But oh my gosh, Paul Madden has been on the frontline of advocacy for a very long time. He worked for 30 years at the Joslin Diabetes Center in Boston. He also worked at Johnson and Johnson with Animas, he has been part leadership roles at children with diabetes. He's been a part of the diabetes education and camping Association, the Association of diabetes educators had a large leadership role advocating specifically for people with type one at the American Diabetes Association. And he spoke last year, you might have seen him he was at the White House announcement on insulin pricing.

Paul was diagnosed with type one when he was nine years old. And that was almost 60 years ago. And he talks a little bit about that in my interview with him. But I have seen Paul on social media advocating for the COVID vaccine prioritization for people with type one. So I reached out and I was really happy that he agreed and had time to join me. This is also a video interview, it's over on the YouTube channel. And I'll link that up in the show notes. If you would prefer to watch that the video is a little bit different. It is a little bit longer. And you will see exactly what we're referring to here right at the beginning. But you can certainly listen to it just as easily. You're not going to miss anything. If you just listen to my interview with Paul Madden. Paul, thank you so much for joining me.

Paul Madden  8:01

Stacey . I've watched your podcasts and I know that you're getting right information out to us all and our diabetes world all 34 plus million of us here in the US. Yeah,

Stacey Simms  8:11

well, I appreciate that. I'm grateful that it's generally an audio podcast with these video segments put in because as you can see, my production is sometimes a little wonky. We hit this at the exact right time for the sun to be setting on my window. So we've got some interesting stripes on me with the light. But we'll work around that. Yes. You're here because you have so much great information about type one advocacy, specifically right now around the COVID vaccine and prioritization. Let's just take a step back. Can you talk a little bit about the situation? We are in the middle to late February at the moment where things stand? I mean, the US has a bunch of different policies where things stand for people with type one right

Paul Madden  8:49

now. Yeah, I'll give you a couple of scenarios of where it stands right now, Stacey . And regrettably, we can't define it well for every state without going into this state COVID Medical policy, but generally the CDC put out their announcements, and they said something to the effect. I won't quote them, but I'll paraphrase. But they did recognize that type two diabetes was a higher risk and a priority for earlier vaccinations. And that is very correct. Unfortunately, their wording for type one was far more nebulous, far less clear. And they said that for type one insulin dependent diabetes, we suspect it could be a higher risk.

Now the challenge is, as you know, Stacey , we have approximately 1.6 million people in the US with active type 1 diabetes of all ages, you older guys and gals and folks like me, and very young little babies, little kids and all the way in between the type two population. It's over 32 million and so very quickly within the first few months of COVID, after February, March, they saw the data from the hospitals from the treatment centers, the ICU that said, Wow, type two diabetes is about a 3.3 times greater risk of serious complications than the citizen without diabetes. So they correctly log that in there, unfortunately, and we're saddened by the fact and I and others, it's it's never alone. It's always a group of us.

But I reached out to the ADA, the JDRF, the the diabetes patient advocacy coalition, the leadership and diabetes group, and I children with diabetes, a group that you and I know, well. And 18 groups finally signed on when we sent a letter to Dr. Redfield, who was in charge of CDC. And we said, Please, sir, there's some new data, some new science that started to come out beautiful science in November, December, and a new article just came out in January to say, type one? Absolutely. If you give COVID Is it the same high risk level and one study imply there could be a little bit higher risk than type two? So six states have made the change? And have said, Absolutely, let's do it. Some states haven't defined type one and type two in their state policy, because remember, the CDC allowed the states to determine who gets the vaccinations on their state schedules, I got involved very much in Massachusetts, because unfortunately, they did distinguish, and they still have not changed the Priority Ranking for type one. And we're very discouraged by that. very discouraged. So the type one population, our kids get no priority. If you're over 65, we can now start to get it just because of our age tomorrow. But that's not enough. We've got to get all people with type 1 diabetes at the same Priority Ranking for vaccinations. So that's what we dug in, we're trying to get, we have a sense that we're going to get a meeting with the COVID Committee, the medical leaders here in Massachusetts, I know others are doing the same.

So we only again, know of six states that have put type one in with type two. But as I'm talking to more and more advocates throughout our country, I'm learning that some again, like I said earlier don't distinguish. And they allow type one and type two to be together both as a high priority ranking. But we don't think that's more than about 20 to 25% of our states. And we don't have a definite number on that. So we got to keep pushing.

Stacey Simms  12:38

I'm in North Carolina, as you know, and they did not first but they did slide type one up. And you know, a question that came up early on. And again, we want it to all be the same we want, again, we want that type one higher, but who would check and what a burden to kind of put on these health care workers who are giving vaccinations? I mean, I get it, if you're going up to kids, if you're a 12 year old, they're gonna say type two. But if you're 40, is someone going to be standing there saying, Well, what type do you have? What's your a one? See, show me your insulin pump? You know, it just seemed to put a burden on folks.

Paul Madden  13:12

Yeah, we certainly did with this. You know, we haven't done this, as you know, since the Spanish Flu 1918. But none of us were around, you know, maybe 30 people around, but they can't really relay the story very well. They were three years old.

Stacey Simms  13:27

And I hate to use a little dark humor. But people with type 1 diabetes were not included. They hadn't even figured out insulin at the last time

Paul Madden  13:34

we checked I was pretty insulin era. Exactly, exactly. Right. So we've got to keep pushing and you know it Stacey  advocacy. And for everyone who's participating in this advocacy is about getting the science clear. Having good backing, making sure you have some spokespersons from healthcare who are specialists in diabetes. I am a psychologist. I'm a diabetes educator. I know my diabetes, my personal diabetes of 59 plus years, and I've been an educator in it for 47 years, so I know it well. But I also realized that I often need to make sure I've got several physicians and other healthcare providers lined up and that we have done. Several people that have said, Yes, the Joslin clinic came roaring through and said, What do you need from us? We've got it. And they just sent me another article today that I can submit to the governor's office and the COVID Committee. And that's the type of things that we have to do. There's not enough people that get paid to be advocates. And I want to stress that and I wish that there were and I know the diabetes organizations wish they they had so much money that they could easily hire more people to do these things. So it really relies on us. The volunteers also offered to put the pieces together again working though, and supporting those diabetes health care providers.

Stacey Simms  15:00

So if someone isn't an individual, they're not affiliated with a formal advocacy group, and they're in a state like Massachusetts or another state where they haven't put the type one priority higher. What do you do? What do you call?

Stacey Simms  15:18

Right back to Paul answering that question. But first Diabetes Connections is brought to you by Gvoke Hypopen. And you know, almost everybody 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 what Gvoke Hypopen comes in. It's the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go. With no visible needle. That means it's easy to use 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.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit gvokeglucagon.com slash risk.

Now back to Paul Madden answering my question of what are we supposed to do? Who do you call?

Paul Madden  16:08

Yeah, I think most people bombard their diabetes specialist team phone number and email which was by the young people especially. And typically, the diabetes professionals in our states know who the advocates are. And if they don't, and they're seeing this, I want to encourage you to find out who your your statewide volunteer advocates are, and know the people from JDRF, from ADA, from the diabetes, DPAC group, patient advocacy coalition. They're quite a remarkable group. This is to pay staff and a bunch of wonderful volunteers, some very top senior business leaders who have been in diabetes for a long time, including the nonprofit world in diabetes, and they volunteered their time for this. So your medical professional should know. And then we the people living with diabetes should get to know these advocates also, because there will be other issues. This is a big one right now. But there's other big issues, the whole reimbursement, the medical switching, all of these things that make no sense whatsoever.

Stacey Simms  17:14

Yeah. so in this situation, though, you would think it's better to call the people that are already working on it, rather than your congressman or your health department, or things like that?

Paul Madden  17:24

Well, no, I think rather to coordinate with the people that are already working on it. But no, Stacey , you bring up a great point here, you and I and all of us have to be wonderful employers. And by that I mean, our state representatives, our federal senators and representatives, they work for us whether or not you voted for them, they are in office and taxpayer dollars, pay their salaries and benefits packages. And again, we've got to be a cooperative employee, employer, but we they do work for us. And we have to make sure they understand that this is a priority for 1.6 million people in the United States that live with diabetes. Absolutely. Yeah.

Stacey Simms  18:08

I don't know if you can answer this. But I'm curious. Do you think that when the CDC put out those guidelines, and when states like Massachusetts aren't listening to advocates like yourself? I think not taking type 1 seriously? Do they maybe not understand it? They don't they think it's just kids? What do you think's going on?

Paul Madden  18:26

Yeah, so maybe it's not a full understanding, but that the medical experts on the COVID committees, typically, and I'll speak for Mass. These are good doctors. Yeah, they know medicine, but they also are not diabetes specialist. And the thing again, I'll go back to the does hinder us some, when you're trying to collect quick data on a crisis like this a COVID crisis, it takes five to six months to get enough, a big enough and a big enough group of people with type 1 diabetes that have had COVID. I respect that they went after this from the very beginning with What does healthcare show us? What does the what's the medical condition? Because we got to rank order this I appreciate that I even though I'm a psychologist, I always go after what's the medicine say first before I start to speak, and I surround myself with bright people who are endocrinologist who are brilliant research scientists, and they share things with me so I can understand it. And I can pass it along. But we've got to get the message.

I tell you what I think is happening. This is a frightening crisis financially, for every state for an awful lot of good families. Some adults are out of jobs for the first time in their lives. And maybe they have a child and maybe even two children that happened to have diabetes or some other added concern that costs a lot of money. Sometimes, you know, some people have gone into more of a survival and I respect that and we are in a survival state of mind. It's hard to process more information coming in. And I'm aware that there are many groups right now approaching and I'll speak specifically for mass COVID. Committee, but it's all of the committee's in every state of saying, How come my condition is not a priority? How come this is not a priority. And I just would say to all of us that our diabetes will stick with the science, get medical people aligned with you. I remain very discouraged right now. But I remain very positive in the way I state things, because we must change this. And that has to change soon. I think the committee's are sometimes so overwhelmed with so many emails, and so many calls. And that's why I go to groups like Joslin, like Harvard for their backing. And I've pulled called in a colleague who was a good friend of a friend who knows the governor. So we're doing those types of things that we all of us will know someone who knows someone. And boy, you got to do that you have to win advocacy work? Yeah.

Stacey Simms  21:08

It's difficult to say the least I'm glad. I mean, I know how I would want to prioritize it. But I'm glad I'm not the person who has to prioritize it.

Paul Madden  21:17

Very challenging, difficult. And that's why they can put a little bit of a protection in front of themselves by saying, we understand the science clearly says this now. So now we must change this. And if you stay on the science, and that's it, the science will guide you with the wisest of decisions. Yeah.

Stacey Simms  21:37

I'm curious, Paul. And we will probably talk more about vaccinations as we go forward here. But how have you been this last year? You know,what have you been up to? I see all of your conference tags behind you. Obviously, we haven't been going to those conferences. How are you all doing?

Paul Madden  21:53

Yeah, I you know, it's challenging for me. And let me personalize it. It's challenging, challenging for me, for my sister's family, my brother's family, for cousins, all of us. We've actually done some zoom calls with cousins. Who ever would have thought I would have done that I would have just driven you know, 50 miles away to see my cousin. Right. early on. I you know, I had launched my business in after going into semi retirement and we had some family, a family challenge with a health issue with a wonderful loving family member. So I decided, oh, she's 68 years old, you can step back a little bit and focus more on family right now. And I appreciate that I had that that luxury, truly do. But then I realized and he's doing great. cancer free for the first time in over a year after seven years of dealing with a challenging cancer. So we are so blessed. And I realized, oh boy, you better get going. So I launched my business in January of last year. 2020. Wow. Robust February, and then the day flew home from the diabetes technology meetings in Madrid. I saw in a CNN screen in English, the first case of Corona Coronavirus, identified in Madrid, I had no idea what that meant. The last Sunday in February. Wow. What did I know that four to five weeks later, because I've had diabetes for so many years. Because I am over 65. I said, I just took a breath and said, You know what? You need to shut down. I certainly kept doing some present zoom presentations, some FDA work and all of that. But I really basically shut down what I was doing. You know,

Stacey Simms  23:34

from your perspective, you're much more dialed into this. Is this a question of sit tight, it's coming, push where you can? Or is there a voice in your head saying this is gonna take forever? We're not gonna get people with diabetes vaccinated until summer, or later, or? I'm not sure what I'm asking Paul. But I'm just sometimes I could lay awake at night and worry.

Paul Madden  23:51

Yeah. And so they're opening it up for me at over 65 tomorrow in Massachusetts. So I'll get it the first one within the next three to four or five weeks. Okay, at least I have an identified timeline now. But I do worry about the rest of my younger friends. I do. And I would say again, you are and this is on a state level. Now, your state senators and state representatives work for you. The science is very clear. That type one is comparable to the risk of type two diabetes, if you should happen to get COVID. And I would say make sure your governor's office knows that. Make sure the Department of Health knows that and absolutely call and ask your state senator and state representatives to work on your behalf or your loved ones behalf because we've got to change this. And the science is clearly there. It's on the ADA web page. It's on the JDRF web page. And clearly you can get a hold of the science and you look up COVID and diabetes right now. Did this morning, and some of the more prominent good studies are listed, including now to type 1 diabetes to

Stacey Simms  25:07

show wonder, I don't know if I agree with this, but I've heard a few people say that one of the issues was almost self created by at the very beginning of the pandemic, people feeling that there. And maybe it's because there wasn't enough information, but that people with type one who got COVID did not have as serious cases as people with type two, and somehow separating that out and saying, It's okay, we're gonna be okay. We don't have to worry as much because I remember seeing those posts back then. But as you're saying, the science doesn't bear that

Paul Madden  25:35

out. If you get it, you know, if you have type one or type two diabetes, there's no you have no greater chance of getting coke. Right, you know, thank goodness, so, so mass, washing hands, social distancing, all those things are crucial. And I just say to everyone hang in, the light is at the end of the tunnel in the months ahead, and I want to shorten it to a few months, not several more months. And that's why I'm saying for people with diabetes, and for our loved ones, you know, and maybe it's your neighbor, it's three houses down, who signed, married, the governor's daughter, I don't care what the connection is. It's been important our health, it really is. And that's networking at the fullest. And it's amazing to me, some of that my grandmother, one of my grandma's was an incredible network. And I think I probably got it from her and then passed along by my mother. You know, that's what you've got to do right now.

Stacey Simms  26:30

I'm curious to you know, do you think going forward, there are any lessons in this for the diabetes, the whole diabetes community, not just type one and lessons and all this?

Paul Madden  26:40

Yeah. So I think there are a couple of lessons and thanks for asking. I think the lessons are that, based on the science, standing together, we can change wrong agendas throughout our country relative to diabetes care. In this case, I mean, care for COVID prevention, vaccination, but for everything, and I need it for every new technology and drug that gets out there. If we stand together, just because you get the CGM. And if your other friend who's a senior or 12 years old, doesn't have the CGM help push for them. We are one family of 34 plus million people with type one or type two diabetes. I know the rest have distinct differences. But there's a lot of commonalities. And together that's an awful lot of votes for anyone who is serious about continuing in the political world. And I think we have to approach it like that. And it is a question of the blunt statement, the quality and quantity of one because Paul Madden has had access I had like like you and your family does with your son. I have been blessed. My mother and father knew nothing. When I was diagnosed. 59 years ago, there were under 3 million people in this country with diabetes. Wow. And it was it was closer to two is what I'm told, right? 34 plus million now. It's unbelievable. So diabetes really wasn't discussed. In fact, it was all the poor kid. He's got it. Yeah. Because people didn't survive. And my mother and father with my medical team at you have and I will say and we had a family practitioner, he diagnosed it. I was nine years old. I was peeing the bed like Niagara Falls.

I didn't know what was going on. And my sheets actually were sticky. So yes, folks, there is sugar in the urine. And I was heartbroken and I dropped 10 pounds. It was a healthy little boy. I would drop 10 pounds in five or six days. And the family doc said to my parents I was in the room and he said Mr. Mrs. Madden, Paul, I don't do diabetes and children, but the Joslin clinic is 15 miles away, and I'm gonna make a referral over there. And hallelujah for the next 30 years Dr. Leo Kroll and his team at Joslin imprinted on me beautifully on my parents, you know, my father walked me out into the courts when I was I guess it was 10 at that point, my first full summer with diabetes and walked me on the court to  meet Bill Talbert, the first professional and the first athlete ever that was named number one or two in the world that happened to have insulin dependent diabetes, Bill & I became good friends for the next almost 50 years before bill passed in his late 80s. But that was the exposure my parents made sure I got and that's that's what all of you have to do to to the best of your ability.

You know, one reason I have stepped down after two terms in six years on the children with diabetes board, I just tell everyone and as you know, Stacey , it's it's we call it children with diabetes, but approximately half of the people come now are adults with type 1 diabetes. And I forget the numbers, Jeff Hitchcock sentences that over 5000 people did the Virtual Education because we couldn't meet in person. Oh, it was amazing. It was amazing. And you will find that yes, absolutely. But the camaraderie you get from that, and we bring in some of the finest speakers in the world who say yes. And typically they do it for free. That's unbelievable. They fly from all over. And not just sometimes the US from other countries even, you know, so it's that type of cost and peer support, because let's face it, kids with diabetes don't live there. They don't probably don't have six other neighbors in their neighborhood that are also kids with diabetes. No, no, do us adults who have type one diabetes, I don't know anyone who lives within three miles of me, that's not fair. I do know one gentleman who's had type 1 diabetes for 65 years. And we've known each other for 50 plus years. But other than that, I don't know who else has type 1 diabetes in the neighborhood. So Martin, and I go off a walk sometimes. And it's an absolute pleasure. And we do support each other.

And it's the power of support when you're dealing with something you wish the heck you didn't have. And you know, you got to move through it. So you have the fullest, most robust and the happiest of lives, that peer support can be rather powerful. That's why I think a well run diabetes camp, I think, the support education groups at some of the organizations. That's why I think the podcasts are so crucial. I think things like this station that you and others are doing consistently, a very powerful to convey information. And again, you and I know as long as people remember that Paul said, what he does with his diabetes, gives me great results. Yeah, but remember, folks, I do it with my medical team who's coached me and always coach me. And if I ever had a problem, I can't figure out the answer to what I do. I'm a diabetes educator. But but when it's a personal thing, you don't stay as objective and you don't sometimes pull out all the science, right? When you're talking about yourself or thinking about yourself, I pick up the phone, and the young people probably send the email more frequently than I do. That's okay. Whatever your line of communication is, that's the important thing to promote the most robust health so that diabetes is an element of your life, but never hinders your life. That's the goal. That's the goal.

Stacey Simms  32:30

Paul, thank you so much. I could talk to you all day. You're inspiring on an I don't know, I'm gonna probably regret saying this. But you are inspiring on kind of like an everyday getting it done. level. You know, you and I are not people that are going to go up Mount Everest, I don't think you've been at Mount Everest.

Paul Madden  32:47

You know, I have a few merits. I know, I'm not gonna do Everest. I'll leave that to the world crushes.

Stacey Simms  32:56

But I just love it. And I'm so glad to hear your family members doing better than doing well. So stay well. Keep us posted. Thank you for your incredible advocacy. And let's follow up as more information comes in and you go give them Helen, Massachusetts, Paul.

Paul Madden  33:11

Absolutely. Listening, call your state reps and Saturdays, please. Thanks.

Unknown Speaker  33:23

You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms  33:29

More information about Paul and about the COVID vaccine and what we can do, and more advocacy from the groups that he mentioned. I'll put that all in the show notes at Diabetes, Connections comm you can always find the episode homepage there. I always say this, but it's a little difficult sometimes in the podcast apps to find the links. So if you have any trouble, just head on back to the homepage, and it is always there for you. I want to make this as easy as possible. So if there's a better way to do it, or you need more info, always contact me Stacey  at Diabetes connections.com.

We're going to talk about a new study looking at prevention of type one by focusing on babies. And a new study that I gotta tell you is a no duh. I mean, who was surprised by this kind of study, but that's coming up in just a moment. First, Diabetes Connections is brought to you by Dexcom. And do you know about Dexcom clarity, this is their diabetes management software. And for a long time, I just thought it was something our endo used, you can use it on both the desktop or as an app on your phone. It's an easy way to keep track of the big picture. I check it about once a week. And it really helps me and Benny just dial back and see longer term trends helps us not overreact to what happened for just one day, or even just one hour. The overlay reports help put context to Benny's glucose levels and patterns. You can even share the reports with your care team, which makes appointments a lot more productive. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us. Find out more at Diabetes connections.com and click on the Dexcom logo.

Our innovations segment this week features a couple of studies that focus on kids. And this very first one is really for the tiniest in the diabetes community. It's a study that just started and it's looking at the correlation of the antibodies that appear in people with type 1 diabetes, as well as intestinal flora in early childhood. So basically, what the heck is going on in the gut in people who go on to develop type 1 diabetes, the study, and I'm not sure I'm pronouncing it correctly, I'll link it up with a study is center one, a si en T one, a. And it's going to start in the spring this year, in a few European countries, as part of an international initiative to prevent type 1 diabetes, it follows another study that they're all doing called point, which is administering insulin orally in the hopes that it would somehow it says your train and sensitize the immune system at an early stage so that auto immunity against insulin does not occur. So if the results were both studies show what they're hoping they're going to combine them for what they hope will be a type one prevention strategy, really interesting stuff. And I will link up this study. Again, it's not open here in the States. This is happening in Europe, but really interesting study. And I will link up more information. Again, it's happening in Europe. So it's not open for people in the United States to take part in. But hey, I'll keep you posted.

The other study I want to talk about this week, and I mentioned this earlier in the show as like a real Hey, no duh type moment. But hey, these things have to be studied. I will read from the endocrinology network where I saw this written up, and they say, a closed loop control insulin delivery system could be safe and effective for use in adolescents and young adults with type one diabetes, according to the results of the International diabetes closed loop trial. Shockingly, I added that results of the study indicated use of a closed loop control for six months resulted in improved time and range and reduced incidence of hyperglycemia. In younger patients with type one diabetes, I shouldn't get around because they do need to prove these things. We do need to you know, make sure that there is clinical evidence before we move forward. But you as you listen, know, many of you have been doing DIY for many years, and you know this to be the case, I will make it up. Interestingly, as in most of these studies, the biggest improvement was in overnights, right, a lot less overnight, low blood sugar hypoglycemia, which is amazing. And I can tell you just from experience with Benny on what I call a hybrid closed loop, but Tandem is control IQ is one of those used in this study. So they're calling a closed loop. But I mean, he wakes up almost every morning, not only in range, but he wakes up almost every morning between 90 and 115. I mean, you know, for a 16 year old, it's pretty amazing. And I think that overnight sleep for everybody, it gets so much better. And that in and of itself is such a great health benefit. So I'll leave that study up as well.

Next week, we're gonna be circling back to tell me something good. So I need your good stuff for the show. You can hit me up Stacey  at Diabetes connections.com. I will post to the Facebook group and I'd love to hear what's going on that you want to celebrate.

Okay, before I let you go, I need to let you know that this was really weird. I had a crazy low blood sugar in the middle of this episode. Right after the dex comment that you heard. I pressed pause and I was feeling shaky and sweaty and I really was having trouble getting through it. I went downstairs and I checked my blood sugar with one of Benny's meters. And it was 46.  So I scurried around and got some peanut butter crackers, I probably should have had a juice box, I wasn't really thinking clearly shockingly. And I sat down and ate the crackers and waited for my blood sugar to come up. And boy, I gotta tell you, it's no shock to most of you. I was so hungry after that. And we're about half an hour away from dinner and slaves making a great dinner and I was so hungry, but I waited. And now I'm upstairs again, where my office is recording the podcast.

It's not the first time that I've had a low blood sugar like that, that I've measured it that low. And I've talked to my doctor about it, I actually had a low blood sugar, the first time that I remember really measuring it several years ago at friends for life. And I checked it in the middle of the vendor Hall and it was it was in the 40s. And of course you know, you've got what a great place to have a low if Rudy was bringing me gummies and tabs and taking care of me. But you know, again, I don't have diabetes. And I don't have I don't think this is the right name for it. But I don't have like chronic hypoglycemia or anything dangerous. My doctor just has told me that I'm the kind of person that needs to eat every couple of hours and I need to be careful that I don't just eat empty carbs during the day that lunch and breakfast, have protein and all that good stuff. So today for the first time in a long time. I had a lunch that was not smart and it was delicious, but it was very carb heavy and I've been eating really lower carb for the last couple of months. So I just didn't have a lot of stuff in the house. Slade was at the grocery store. I had cheese blintzes for lunch. They were delicious. I'm not sure if they were working 46 blood sugar a couple of hours later, but there you go. So True Confessions all man, low blood sugars, they just suck. They feel like garbage. And I'm really happy that I'm feeling better. But I was sweating and low and shaky. And I think that feeling of wanting to eat everything after it's so difficult, I will follow up if I need to. I take very good care of my health and I take these things seriously. But I wanted to let you know that that happened while I was taping the show. How weird

All right, a classic episode coming up in just a couple of days. We're gonna be taking a look back at Jerry the bear. And this is not during the bear as you know him today. This is a much earlier incarnation of Jerry and the great people who created him. It was so much fun to talk to them five years ago now man, I love these classic episodes. I hope you're enjoying them.

Stacey Simms  40:48

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 in a couple of days. Until then, be kind to yourself.

Benny  41:03

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

The Legend of Sam Fuld was born during his days in the minor leagues and when he played for the Oakland A's and in Tampa Bay. It involved his wild dives and seeming willingness to do whatever it took to make the play. Earlier this year, Fuld became the General Manager of the Philadelphia Phillies.

Sam Fuld was diagnosed with type 1 at age ten and first spoke to Stacey in 2016. In this classic episode he shares his story, what he did as a player to manage his blood sugar, and a lot about the camp he's still organizing today.

Video of Sam's plays from 2013

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:

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 like does snake oil actually contain snakes? If you're intrigued by science get excited about the process of discovery and one of the best stories that your next dinner party inside the breakthrough is the show for you.

Announcer  0:25

This is Diabetes Connections with Stacey Simms.

Stacey Simms  0:31

Welcome to a classic episode of the show where we take a look back at stories of connection that you may have missed the first time around. I'm your host, Stacey Simms, and of course, the emphasis is still on educating and inspiring people with diabetes with a focus on those who use insulin.

This time around, you're going to hear from the legendary Major League Baseball player Sam Fuld diagnosed with type one at age 10. I first spoke to Sam in 2016, when he was playing with the Oakland A's. He retired as a player in 2017. And he was just recently named the general manager of the Philadelphia Phillies.

If you're not familiar with Sam fold, I say legendary because and you'll hear us talk about this. There was a time when he was known for these incredible plays in the outfield where he would just throw his body into walls, he would make these dives that to me, the mom looked painful. And I linked up one of the many videos made by fans, you can check that out in Diabetes Connections, the group on Facebook, but Sam is a lot more than the legend. He also has a terrific program, a coaching program for kids with type one. I will let him tell you more about that. But I will link up the information in the show notes. And I will talk about that after the interview as well. Because you know of course in 2021, it looks a little bit different.

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

This episode of Diabetes Connections is supported by inside the breakthrough a new history of science podcast, the 2021 is the 100th anniversary as most of you know of the discovery of insulin. It is 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. The host, Dan Riskin, has a great following you may know him from many years of hosting primetime Discovery Channel shows. He's also really funny. He's appeared on a lot of late night shows and he wrote the book, Mother Nature is trying to kill you. We've got a link to inside the breakthrough over at Diabetes connections.com. And of course you can find it wherever you listen to podcasts.

When I'm doing these classic episodes, I have reaching back to the people featured in them for a comment and update, you know, to let them know that we're bringing the interviews back out and see if there's anything they can add and Sam Fuld was kind enough to correspond with me. And I did send to him congratulations on the amazing new job as General Manager for the Phillies. And I asked him if he could give us a diabetes update. So here's what he said, quote,

“Hey, Stacy, I am really enjoying my new role. I am trying to learn and achieve as much as possible as we enter spring training. I'm surrounded by a lot of experienced co workers and have been leaning on them extensively throughout the past few weeks. Time is precious these days. So I'm really grateful for my Dexcom G6. Next up is a transition away from insulin pens, and toward an insulin pump. I'm really excited about experimenting with one of the hybrid closed loop systems.”

So that's the update from Sam, as you'll hear the interview, he was not using an insulin pump. And of course I told him he can just jump in Diabetes Connections, the Facebook group and learn more from all of you. So let's see if he pops up.

All right, here's my interview from February 2016. All right, my guest today is Sam fold. He was diagnosed type 1 diabetes at age 10. after he'd already made up his mind to play professional baseball, as you likely know, he got there playing first with the Cubs than at Tampa Bay. And now with the Oakland A's. It was while in Tampa that Sam started his weekend camp for kids with diabetes, teaching them as he's learned that diabetes shouldn't hold you back. As a mom of a kid who plays baseball has type 1 diabetes. I'm really excited to talk to you, Sam fold. Welcome to Diabetes Connections.

Sam Fuld  4:31

Hey, thanks for having me.

Stacey Simms  4:32

Can we start kind of by going back before you were even diagnosed? You were really into baseball is what I've read. Is that right?

Sam Fuld  4:41

Oh, yeah, yeah, baseball was. I really can't remember a time where I didn't love baseball. I was I was probably four or five years old when I realized like, oh, man, this is my favorite sport. I mean, I played every sport imaginable grown up but there was something about baseball that I just really loved and I think it was better Added to then the other sports was okay, the other ones. But for some reason I was better in baseball I think that probably helped contribute to my passion for but I think it worked hand in hand. I was good at it because I loved it. And I loved it even more because I was good at.

Stacey Simms  5:14

So not too many years later than you found out you had type 1 diabetes, what happened? Do you remember your diagnosis?

Sam Fuld  5:21

vaguely. I mean, luckily, it wasn't anything too scary. I mean, it was essentially an accumulation of a couple months of symptoms. And there's no type 1 diabetes in my family at all. So my parents didn't really know what was going on. They just something was going on. And, you know, I showed all the classic symptoms of going to the bathroom all the time and being thirsty and losing weight. You know, I was 10 years old and lost 10 pounds over the summer. So my parents didn't take them too long to figure out something was wrong. So I think I remember going into the doctor and you know, it was about a 480, which obviously is pretty high, but certainly not really high. When you when you compare it to some of the other numbers that diagnosed diabetics get. So you know, it wasn't anything too scary, luckily, and we all knew right away what what the deal was,

Stacey Simms  6:09

what was the deal? I mean, how did it change your life? And this was, I'll call it a generation ago, let's say your diagnosis, right, like 20 years ago. So how did it change your life? This wasn't a time when people were automatically going on an insulin pump and getting a Dexcom

Sam Fuld  6:23

No, not at all. No, I don't even think pumps were on the market. At that point. It was certainly not an option. And yeah, I just remember well, so I was at an age where I could be pretty independent with it. So I remember my parents helped me out with with my injections for the first few months after being diagnosed. And but shortly thereafter, I was really independent. And I you know, I had the old old school syringe and the vials and my meter. You know, I think it probably was like a 25 second countdown. So which is an eternity nowadays, but it wasn't too bad. I mean, it wasn't like reading the color of a urine sample. Right?

Stacey Simms  6:59

Nobody was sharpening the needles.

Sam Fuld  7:02

Yeah, so somewhere in between, like ancient diabetes and current diabetes treatment. I was so naive. I didn't know what I had. No, you know, I think my uncle had a cat with diabetes. And that was about all I knew about. So I really, in some ways, was naive and a little ignorant. And I just thought, okay, God, I figured it was kind of like having asthma. Like I had asthma at the time. And I was like, Okay, I guess it's another thing to deal with. And I guess that naivete kind of helped me in some ways.

Stacey Simms  7:29

Yeah. Well, it's good to not know what you can't do. Did you ever think you couldn't play baseball?

Sam Fuld  7:34

No, no, I was lucky. I mean, the the medical staff was really positive and supportive, and my family and friends are really supportive. So it really never crossed my mind. It would hold me back, I think I was lucky to be surrounded by some really supportive people. And I, you know, I think it wasn't until months or years after I was diagnosed, that I heard this stigma that maybe diabetes could hold you back, or that that was even a thing. So I think, again, I was lucky that the first thing that popped in my mind was okay, nothing's gonna change, you're gonna have to see me a big pain in the butt potentially. But, you know, ultimately, it's not gonna hold me back.

Stacey Simms  8:11

And you mentioned you had asthma. Do you don't have

Sam Fuld  8:13

to do that? No, I was kind of like an exercise induced as it was. I sort of grew out of it. My dad is as one goes. Yeah, I don't know. It's, um, I would put the time I was like, using an inhaler occasionally. But no, luckily, that's a non issue at this point.

Stacey Simms  8:28

Yeah, I was gonna say that's a lot to deal with. But you've mentioned that you had some great inspiration shortly after your diagnosis, because there have been other professional ballplayers with type one.

Sam Fuld  8:40

Yeah, there have not too many. But you know, I think in back then, when I was diagnosed, it wasn't like, you could just hop online and Google like type one diabetic baseball players, you know, kind of word of mouth. So I know about rod Santos, the Chicago Cubs. Great. And then I had a family friend, at the time was a pitching coach for the Boston Red Sox. And he knew of Bill gullickson, who was a longtime Major League pitcher. And so when I was about type one himself, and when I was about 12, you know, year and a half after being diagnosed, my family friends set up this sort of meeting on the field at Fenway Park, when when Bill was in town pitching for the Tigers, and I got to meet him and you know, it was like a two minute conversation and but that really kind of went a long way I was I knew he existed, but to really meet meet him face to face, it kind of gave me an extra bit of motivation.

Stacey Simms  9:29

I think that's so important. Because as you said, no one sat you down a diagnosis and said, well, son, your dreams of baseball are done. This is not going to happen for you. And a lot of kids in in my son's generation, don't worry about that either. They're not really told anymore. This is going to hold you back. But being you know, kind of hearing that and then seeing and meeting somebody who's done that is a big difference is that one of the reasons I would assume that talking to Bill gullickson really cemented it for you why you now talk to these kids.

Sam Fuld  10:00

No doubt, no doubt. I mean, I remember that moment. You know, it was 22 years ago, 2122 years ago, but I remember it like it was yesterday. And I definitely impacts the way I, you know, I go out of my way to meet other kids with type one. So I think yeah, that that moment was so invigorating to me, and I'll never forget it. Part of the inspiration for the camp that I do and and all the interaction I have with with young type ones.

Stacey Simms  10:26

Well, let's talk about the camp in a little bit. But I do want to focus on I mean, the way you play baseball, that crazy first season in 2011, when you had all of those, the jumping and the diving and the YouTube videos, Was that fun for you? Instead of crazy here, because I'd also like to talk to your mom, I was worried about you getting hurt. so silly.

Unknown Speaker  10:50

That like,

Sam Fuld  10:52

I can't speak for my mom. She was probably willing to deal with like the whiplash that I got on all those guys. I think she got a pretty good kick out of that whole run to know I loved it. It was an amazing, amazing part of my career in life. Really, it was, it happens so quickly, you know, I was kind of, I just come over to the rays from the Cubs in a trade. And, you know, I had a little bit of big time with the cubs. But this was like my first opportunity that first time making the team out of spring training, you know, but even at that point on opening day, I was like, essentially, the last man on the team, you know, it's like the fifth outfielder and didn't envision really playing a whole lot. I was just kind of thrilled to be on the team. And Manny Ramirez retired. And that kind of thrust me into like the starting role. And I just kind of ran with it. And the next few weeks, were just like this crazy, wild ride. And I guess I'm lucky I had the perspective, I guess I know enough perspective to try to enjoy the moment as crazy as it was. There were moments I was able to like, sit back and just go oh my gosh, life is crazy right now. But this is fine.

Stacey Simms  11:59

It's great. And I if as you listen, if you haven't heard about this, I will link up the legend of Sam fold and some of the videos that came out of that season. A lot of fun. But tell me about your your routine, if you could, I had a lot of questions from people who wanted to know as a professional athlete, how do you do it with type 1 diabetes? How do you take care of yourself? You don't if you don't mind getting a little personal here to kind of share maybe a game day routine or how you take care of at all? Sure.

Sam Fuld  12:27

Well, I mean, I'm sort of an old school diabetic I use my Lantus and novolog pens, and I don't use a CGM, nor pump obviously. And that's just worked for me. I've been I've been using these pins last 10 years or so. And I really, I find that they work well for me. So I do my lantis at night, once once a night, I wish I could draw up like a typical game day for you unfortunately, like they're not none of them are typical there every day is different. And, you know, we play seven o'clock games, we play one o'clock games, we play three o'clock games, you know, we play in New York on East Coast time we play in Oakland, obviously, we play you know, we're in different time zones throughout the year. So really, if, if there's a typical day, it's that I'm changing something. And you know, we're exposed to different foods in the clubhouse, you know, we get fed really well in a clubhouse, but there aren't exactly nutrition, nutritional labels on everything that we eat, you know, it's a lot of like, catered food that that's brought in, and you just, it's a lot of it is a guessing game. So that being said, You know, I do try my best to, you know, maintain some sort of routine and as best as I can. So if it's a night game, which I'd say about two out of three games that we play or night games, I'll just try to have like a, you know, oatmeal is like my go to in the morning. I love oatmeal, maybe a little fruit in the morning. And then sort of snack is needed until lunchtime. And I'll I love going to like a turkey sandwich with some fruit, maybe some vegetables and hummus, something like that pregame and then play at seven and then we eat after. I mean, we haven't crazy when you're diabetic or not. We are on a crazy schedule. You know, your launch is like five o'clock and your dinner is 11 o'clock at night.

Stacey Simms  14:20

My son would think that sounds fantastic. You definitely have dinner at lunch or dinner at five and then dinner lunch again. Yeah,

Sam Fuld  14:28

that's great. Until the next day, you have to wake up at like seven eight o'clock game and then you're back to like normal life. So yes.

Stacey Simms  14:35

Do you just test a lot more? Do you check a lot more?

Sam Fuld  14:37

Yeah, I tend to I mean yeah, whenever Yeah, I think I mean I test a lot regardless, but I particularly during games and yeah, just during the season, I'm checking quite a bit. So you know, typical game, I'll probably check at least three times during the game. I think. On average, I'm up about eight checks per day.

Stacey Simms  14:56

And this is totally nosy so tell me to buzz off is the no pump thing. Comfort thing, or is it also like your, you know, your diving and jumping and running around?

Sam Fuld  15:03

Yeah, I think it's a little of both. You know, I experimented one a couple years ago in an offseason and shoot every kid I talked to loves them, you know, and I hear nothing but great things about them. So I thought I'd give it a shot. I owed it to myself to try it. And I, I definitely found some benefit to it. But I also just didn't like that foreign body attached to me. And I was worried that if I were to wear one during a game, then it would become a bit of a hazard. So yeah, and I think if I were struggling more with my treatment, currently, I would be more compelled to change, but I just don't really comfortable the way.

Stacey Simms  15:39

One of the things I wanted to ask you about. And this is kind of silly, but it's from my son's perspective, I wanted to ask you during his baseball games, and he's 11 years old, we can see because he wears a CGM, that when he's at bat, or when there's a big play, you can watch the adrenaline spike. It's pretty wild. And I'm curious if you have dealt with that kind of thing. And how you deal with perhaps post game highs that are adrenaline highs?

Sam Fuld  16:08

Yeah. Oh, it's really one of the bigger challenges. I mean, especially I, I've had a lot of games where you know, I won't, I won't start, and I'll be on the bench. And all of a sudden, in the eighth inning, I'm called upon a pinch hit. And like, so you go from kind of very relaxed mindset, you know, you try to anticipate these changes being made. So your adrenaline gets going around the sixth seventh inning, you try to get your body loose in case you are called upon. And then but then you just can't predict that sort of that huge adrenaline spike and that blood sugar spike, when you're called upon to pinch it or even pinch Ron, or whatever it may be. And so I mean, I'll be right where I want to be in the low mid one hundreds. And then I got like, 20 minutes later, I mean, 300. And it's unbelievable. Can you just can't it's really tough to control. But yeah, you did you do the best you can. And it's one of those things that just in some ways, it's difficult to combat. And but I'd rather be a little on the high side and on the low side, obviously. So and then, you know, after the games are crazy, because then you get that letdown, essentially, you know, I'll eat an entire meal, a big meal after a game and not even need any novolog just because I've got all that adrenaline wearing off. And then you get those crashes. And you need carbs. Just to keep you aboveboard.

Stacey Simms  17:28

Yeah, it's been an interesting learning experience for us over the years of baseball as he's gone from Little kid playing to bigger kid playing and, you know, the different pressures and things. So he's like, you know, we're all walking science experiments. To some extent, I see

Unknown Speaker  17:42

a lot of data

Stacey Simms  17:44

in your data. And you know, you're the scientist as well. So it's pretty crazy. Let's talk about your camp. This is such a great program. This is the fourth year, you have a camp for kids who play sports, all different kinds of sports. And it's with one of the Tampa hospitals. Tell me about how this came about and what you like about it?

Sam Fuld  18:02

Well, so came about my first year at Tampa, I just got a invitation to come check out the University of South Florida's new Diabetes Center, they just built the center. And they were kind enough to extend an invitation for me to just come check it out and meet the meet the people associated with the, with the center. So I did so I think on an off day that we had, and in Tampa and met all the folks there and and you know, over the last few years, I kind of had it in the back of my mind, this idea of holding a camp diabetes campus sports camp, you know, obviously, what was familiar with the diabetes camps out there. And I thought maybe making it unique to sports, obviously, exercise goes, goes such a long way in regulating type one. So I thought this would be a good idea as I brought up the idea with the USF folks and they loved it. And so within months, we had this first annual sample USF diabetes sports camp. And it was wildly popular. It's like 100 kids, the first year and we did it. And I went out and kind of went on the recruiting trail. You know, it's amazing. I was using like Facebook and LinkedIn, and you name it to find these five coaches, because I wanted all the coaches there to be type one athletes themselves so that all those sports that we offer are coached by type ones themselves who have played at a pretty high level college or even professional. So that part was really fun. I felt like I was recruiting my own little team. And we've, that team has stayed together. Yeah, I think we haven't. We've expanded the number of sports we offer. We have more and more coaches every year. But those that took part in the first year have stayed with us because they know how inspiring the whole weekend is. So

Stacey Simms  19:46

did you look for coaches that were familiar with type one, or did you look for great people to take part and say, Hey, we can teach you the type one stuff?

Sam Fuld  19:52

No, I want to coaches that have type one so all workers have type one. Oh, wow. Yeah. I'd say a couple that we have our are parents of type ones. But other Otherwise, I'd say out of the 15 to 20 coaches that we have, you know, all but two or three are type ones themselves. So I mean, we have a basketball player who played overseas, he's type one we have a great tennis pro Jen king who played, she played in several years opens, and she's type one. And Bill gullickson, ironically, has come

Stacey Simms  20:21

out. Great.

Sam Fuld  20:23

Yeah, so we have an amazing, amazing staff. And we help we partner with the Florida diabetes camps who have been around for a long time and hold camps throughout the state of Florida. And they've been a tremendous help to. So it's been a huge team effort. And it's just been a really, really, it's one of my favorite weekend's of the year and we've grown and I was worried that when I left Tampa to go to Oakland that my camp following would diminish, but it's actually increased. So I think this thing is here to stay.

Stacey Simms  20:51

It's a pretty unique program to have all of those coaches with type one and all of the different sports, do you find that the kids are coming to maybe learn about their sport, but I would guess that there's a lot more going on than just how to take care of your adrenaline level? After Yeah,

Sam Fuld  21:08

yeah, it's everything. You know, I think there's something empowering about just being around so many other type ones. And then you combine that with just the amount of fun that you have playing the sports that you love, you know, the kids get to choose their three favorite sports, and then they play that those three sports all day. And so you have that amount of fun, and you share those stories with one another. And you learn from the coaches and you this, I think there's just like an intangible feeling you get by being around so many other diabetics, and I that's personally that's one of my favorite parts of the campus is being around learning from others. But just that feeling of comfort, you know, you can't really can't put a price on that.

Stacey Simms  21:50

I have a few questions, if you don't mind that I got from Facebook, i Diabetes Connections, because people are always interested in just different ways that you've handled certain situations. So I'm gonna throw a couple at you. But if these are not things you want to answer, you know, just let me know, they're not crazy, but just let me know. Okay. All right, ready? So Bill wanted to know, he said, I'm interested in how the college recruiting process was impacted by type 1 diabetes. Were coaches reluctant to recruit or was it a non factor? And I'll jump in and add that you played for Stanford? And to that question, then do you disclose that you have diabetes when you're going through shifts? I mean, that's kind of an interesting issue. So I'll let you answer the question.

Sam Fuld  22:30

Yeah, I was lucky enough. As far as I know, I don't think it was a concern. I mean, I was there recruiting a whole scene 15 years ago, or whenever it was, when I was being recruited, it was a little different than it was now. And by no means was I, you know, withholding any information. I was certainly open with my type one. And as far as I know, it was a non issue. It may have been, and I just didn't know about it. But I mean, Stanford recruited me and as far as I know, they they had zero experience with type one ballplayers. So you know, it wasn't like they had this great example of another type one player who was a perfectly great player with with no issues. I was a new experience for them. But it didn't prevent them from recruiting me. So I, again, there was one instance where when I was at Stanford, and I met with a Baltimore Orioles Scout, and this is my senior year in college, and for those of you don't know, in college baseball, you're eligible to be drafted by a major league organization after your junior year. And so I was drafted by the Cubs after my junior year and went back to school my senior year. But in talking with this Oreo Scout, he was saying, Yeah, we wanted to draft him last year. But you know, we were worried about the diabetes. That kind of threw me off a little bit. And that's kind of my one story of somebody like just outright telling me Yeah, we were had some reservations, because you're type one, but otherwise, I am free of any crazy stories.

Stacey Simms  23:54

That's good. That's weird that he would tell you why not just your mouth.

Sam Fuld  23:59

But I'm glad he did. Yeah.

Stacey Simms  24:02

Exactly. It does happen, obviously. And then the other questions, we had a bunch of questions about pumps, which we're not going to ask, but you know, mostly, how do I keep it on my body when I'm sweating? And then how do you manage the delayed hypo reaction to exercising and you mentioned, you're usually eating and not treating? Is that what you usually do?

Sam Fuld  24:20

Yeah, like I said, I mean, it sometimes it means I eat a big meal and don't even give myself any novolog until a little bit later, or it's kind of as needed. Yeah, it's, I'll have like a big plate of pasta and not need a single unit. So, you know, I like anything. It's, it's a matter of regular checks. And, you know, it's, like I said, every day every night is different. You know, the amount of food, the amount of exercise, the stress level, everything is there's always the variables change every day. So the way to combat that is to check as often as you can.

Stacey Simms  24:54

Well, we're talking to you before the camp we're talking to you in the beginning of February here and This podcast will air in a couple of weeks. And when it does, it'll be just about time if not just past time for pitchers and catchers to report on what are you looking forward to this season?

Sam Fuld  25:10

Well, I think I'm, I'm excited for, you know, bounce back here, I think individually and team wise, we had a down year, we had some expectations last year, and we didn't meet them, and we just couldn't seem to catch a break. So I'm looking forward to maybe catching a couple breaks on the positive side and individually just looking to contribute and have a better year individually. And yeah, it's a it's a good group of guys. And I think we're gonna sneak up on some people. We We definitely, we had a frustrating year last year, but I think we're gonna be what will surprise

Stacey Simms  25:40

some people this year. Cool. And let me just end by asking you, we started by talking about you at age five or six, you know, getting into baseball, and being excited about it. What's it like when you now and that first game of the season, or maybe that first practice when you walk on the field? Is it still a little unreal? Or is this just another day of work?

Unknown Speaker  26:01

No, there's

Sam Fuld  26:01

still a feeling of, wow, this is my job, I get to go out and play baseball. You know, there are definitely moments during the year where that wears off. Especially here in the years like last year. No, I think we remind we try to remind each other like, despite all the challenges that that playing presents, the stress and the travel and the expectations, I think we do remind each other we do a good job of saying Holy cow, we get to do this for a living. So this is never you know, that first day getting put on a uniform, be outside and you didn't sign a few hours, things like signing autographs and knowing that there are fans out there who are supporting you. It's a pretty cool moment, despite having this will be like my 13th year or 12th year in professional baseball so it doesn't get old.

Stacey Simms  26:49

Was there anything you wanted to mention anything about camp or anything else that I missed?

Sam Fuld  26:52

No, I think no, the camp obviously is near and dear to my heart. And the other event that I've got going on now is a partner with a nonprofit called slam diabetes who primarily old wiffle ball tournaments as fundraisers for for camps throughout the country. And so I partnered with them and we did a two was a lot of tournaments now in Tampa. And they're really cool. If you get a chance to check it out. It's slam T one D org. And we do some really cool tournaments. They do a bunch of the New England and have now expanded down to Florida partnering with me and we raise money for my camp so that we can keep our camp tuition really low and add to the many features that the camp provides. It's a really cool thing we've you know, last this last tournament we had in Tampa, we had 16 teams, so it's a big tournament we raised up to right around $60,000 so it's a pretty cool event. We had about 2020 big leaguers come out and play with us and it's pretty fun to see a major leaguer. You know, we had Josh Donaldson out MVP of the American League last year who's striking out against the 12 year old. So it's a pretty fun event. It's I definitely encourage you guys to check it out.

Stacey Simms  28:04

We will well Sam Fuld, thank you so much for joining me today. Really appreciate your time.

Sam Fuld  28:09

Thanks for having me. I appreciate it.

Unknown Speaker  28:16

You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms  28:22

More information about Sam on the legend, the video at Diabetes connections.com. And, of course all about the camp as well. Quick note, it says on their website that the 2021 camp will be held virtually, and you never know what other celebrity tnd athletes will stop by. That's what it says on their website. So you can find out more at that link. I think this is fantastic. It's really too bad that everything's virtual right now. But it is a terrific way to connect. And as we've seen, listen to look on the bright side, you can connect with many more people who are available virtually, who may not have been able to travel to the camp. So that's one way to look at it.

Listening back to that interview just kind of made me nostalgic for the time when Benny played baseball. That was his big sport when he was younger elementary school and I think the first year into middle school maybe into seventh grade but i think i think sixth grade was his last year of baseball. I mean diabetes wise, I loved baseball, there was so much downtime, so easy to treat if he needed to. He got his Dexcom in fourth grade I'll never forget this is before share. He had his receiver in you know case and we would hang it from the wire is called wiring, you know what I mean? Looks like netting but the wiring at the dugout and we would hang it on that with a clip. So I could walk over and check it. You didn't get shared till the end of fifth grade. So that was a different story in a different time for the things you remember. And baseball was just a lot of fun. I mean, not even memories of diabetes, just all the good times and the great friends that he made and you know still talks about and hangs out with to this day.

Looking ahead next week. I am working on an episode that should be out next week. If not, it will be out shortly about COVID vaccine type one advocacy. We've been talking about this in the Facebook group, it is different in every state and many states are changing where they're tier type one, it's going up. It's coming sooner for many people in many places with the type one, but not everywhere. So if you are curious about this, we're going to talk about how to find the information where you live. And if you're not happy about it, what you can do to advocate for yourself or your family member, you know, and find out what's going on behind the scenes in terms of advocacy. So I'm really excited to bring that to you. And that should be here next week.

Thank you as always to my editor john, because from audio editing solutions, thank you so much for listening. I hope you're enjoying these classic episodes. I'm having so much fun for me them to you.

I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

Benny  30:52

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

Eric Dutcher is one of the super athletes of the diabetes world. He even calls himself Chronic Superhuman on social media! But he spent years years thinking diabetes meant that he shouldn't be active, and he admits he got pretty low. Eric shares how he found his way to a brighter - and incredibly active - future.

He's now a big part of the Diabetes Sports Project and is training for an Ironman race later this year.

More in this episode on Spare a Rose - marking 8 years of saving lives around the world.

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

Join the Diabetes Connections Facebook Group!

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Episode Transcription (beta) 

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 talking to one of the super athletes of the diabetes world. He even calls himself chronic superhuman on social media. But Eric Dutcher spent years thinking diabetes and activity couldn't go together. So much so that when he decided to finally try something new, he was surprised to see it had been done.

Eric Dutcher  0:49

I searched around and I found one person who had blogged about doing a tough mudder and how he prepared to it. And I kind of said, Well, I guess if he did it, I can't. And as it turns out, it ended up being a super exciting experience, because also on my team was another type one diabetic who had done tough mudders before.

Stacey Simms  1:12

Eric explains what changed how he went from more than a decade of really struggling with type one to now inspiring others. We talk about his involvement in the diabetes sports project

In innovations. This week, spare arose marking eight years of saving lives around the world. 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 I am your host, Stacey Simms. And we aim to educate and inspire by sharing stories of connection with a focus on people who use insulin. My son Benny was diagnosed 14 years ago, just before he turned to my husband lives with type two diabetes. I don't have any kind of diabetes, but I have a background in broadcasting. And that's how you get this podcast.

You know, this year, I had talked a lot about a focus on technology, not to the expense of stories like the one today and talking to people in the community. But I had planned on sharing a few more technology interviews by this point, it just turned out that a few of the companies needed to reschedule we've moved things around. So I am keeping that promise you will hear from the folks at beta bionics, I have an interview setup with tide pool, we're going to talk about a new vaccine study, I have also reached out to several other companies, you'd be familiar with their names. And we're just in the process of setting things up. So I will make good on that promise. There is so much technology that frankly got pushed off because of COVID clinical trials were delayed, FDA approvals were delayed. So this is going to be a really big year for a lot of new possibilities. And I want to make sure we are on top of them. So just a little follow up to know that I have not forgotten. I also want to share with you.

And this has nothing to do with diabetes. I have another big project that's been going on. I've talked about this at the end of a couple of episodes recently. And if you follow me on social media, you've certainly seen it that I have added a brand new project. I am helping people with their podcasts. And it's a wonderful new project. But I gotta tell you setting all this up. It's been like having a full time job while also doing this podcast. And I never want this podcast to suffer. I love doing it so much. And I want to deliver great quality to you as you listen. But just an acknowledgement that if I haven't been on social media quite as much, man setting up I have webinars this week as you listen as this episode goes live, lots of stuff going on so you can follow me. I'll be posting about it on social media trying not to let it take over everything. But it is kicking my butt and I want to be honest about but I'm really excited about that. It's been so much fun. Don't you love trying something new every once in a while.

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

My guest this week is an extremely accomplished athlete who is always on the lookout for what he can do next. He's currently training for an Ironman race COVID permitting later this spring and as you will hear he really enjoys the extreme stuff, but it wasn't always that way. When Eric Dutcher was diagnosed with type one at age 26 he basically stopped all activity. Now he hadn't been an extreme athlete before diabetes, but he really had the idea somehow that any activity was off the books. It's hard to believe that's the same guy now calling himself chronic superhuman on social media, and who is now a big part of the diabetes sports project. I am so glad he decided to share his story, the good and the not so good with all of us. Eric, thank you so much for joining me. I appreciate you making the time to talk to me and the listeners today.

Eric Dutcher  5:28

Thanks, Stacey. I'm so excited to be here.

Stacey Simms  5:30

Let's just start out by laying it out there, you had a very difficult diagnosis story, you were in your mid 20s.

Eric Dutcher  5:37

Yeah, I was 26. And early on in my career, really kind of chasing life through work, and a new marriage that was not healthy. And added to this a very, very difficult diagnosis of diabetes, something I had never been exposed to and never even heard of.

Stacey Simms  6:02

Did your diagnosis go? Okay. In other words, did the doctor know what you have? Did they send you home knowing you had type one? Or was there misunderstanding because I talked to so many people as adults who are told that they have type two?

Eric Dutcher  6:14

Yeah, no, it was a pretty clear type one diagnosis. Back then I probably weighed in at close to 140, which is about 20 pounds less than where I am today. I had really become a macerated. You know, I had the frequent urination, I had the constant hunger, and honestly, that I can remember these moments of just intense pain where I was at a place that I just needed to either eat or drink or Kopi. And I just couldn't at that moment. And it there was physical pain associated with it. But I didn't really understand why

Stacey Simms  6:59

when I said your diagnosis was difficult, I probably should have been more clear. It doesn't sound like your doctor appointment was all that tough. But it does sound like from what I've read and heard you speak about that afterward, your life really took a turn. Can you talk about what happened after?

Eric Dutcher  7:15

Yeah, I think what gets missed a lot, I think with a diabetes diagnosis is that there is a huge loss. And for me, I didn't recognize it. I knew something major had happened to me. And I didn't understand it. But I really started going inward. And in a dark way. I felt like now I wasn't sure what I could do anymore. I already felt belittled, and where I was, and so this made me feel even weaker. And it really spent about a decade just kind of almost afraid to get off the couch. Anything athletic was completely out of the question, connecting with others I didn't know who to connect to I was really isolated. And I do remember, I mean, this was early days of the internet, but one of the first things that I did was, you know, I thought I was gonna die. And I thought I was gonna die soon. And so I was googling to see, you know, how long do you live with diabetes? It was a major concern for me.

Stacey Simms  8:22

I can't imagine you found anything encouraging at that time. I've had Carrie Sparling famously talks about googling diabetes in the early 2000s. And seen nothing but terrifying numbers and awful stories.

Eric Dutcher  8:34

Yeah, I think it was funny that the one thing that I did find that I really kind of took solace in, even though you know, I trust me 10 years of being in a low mood situation, and my father passing away shortly after my diagnosis, and not really being able to be with the family mentally for that whole process. It was really, really hard. But the one solace that I did take was, you know, I found an article about Mary Tyler Moore, and really just, you know, this story that she shared of her driving around in our car with a box of glazed donuts and just crying her eyes out. And that, I guess, sincerity and knowing it from a celebrity and really being able to recognize that, hey, this is painful for other people, too, was the little comfort that I had in that time.

Stacey Simms  9:31

You never know when you tell your story, who's gonna find it when they need it.

Eric Dutcher  9:36

That's great. That's very true. And I think that's, for me, that's one of the most important messages I put out there today is like, I really encourage anyone that is diabetic or goes through a diabetes diagnosis, to just spend a moment to write your story down because your story matters. And a lot of people think, well, what's going to be good about my story, but the thing is we now know, what about our story is going to connect with someone, and it's going to be important to somebody. So we all should share our story.

Unknown Speaker  10:08

When did things start getting better for you? What changed?

Eric Dutcher  10:11

Well, I kind of had to hit rock bottom. And I did. And through that rock bottom process, I really decided that in what rock bottom for me was, I finally realized that I wasn't who I had been before, you know, I was always described as Tigger by my parents, you know, I bounced around, I couldn't sit still in my chair at school, I was always full of joy and energy. And, you know, I was the type of person that had friends that really didn't seem like they would go together. But I enjoyed being with all of them. And I was a crazy kid that would try to get people that had nothing in common all together for one big party. And I woke up one day, and I realized that my ability to see that beauty and everyone around me was no longer there. And I was defaulting to what I was hearing a lot from the toxic relationship that I was in. And I was starting to be really critical of others. And I just kind of said, you know, this is not me. And I wanted to go running back to who I was. So I started reconnecting more with my family, I started reconnecting with my faith, and specifically looking for people that shared my faith. And through that process, I had a co worker years back that I always admired and thought, you know, this person is really strong in their faith and probably is connected into a good church and reconnected with her and, and that's now my wife, Heather, and choose a big part of really pulling me out of that darkness, but not in a way that I was forced out of it. But really, by just sitting with me and helping me see the light that drew me for

Stacey Simms  12:12

you. It's interesting. When I and you mentioned rock bottom, I assumed you're going to say you were hospitalized with you know, DK or something, you know, you wanted to do something and couldn't make the event or Oh, yeah, it was interesting. And maybe I misinterpreted. But it's interesting to hear you speak about it more in you realized that things were just missing from your life. Am I correct? And kind of how I'm interpreting what you mean by rock bottom?

Right back to Eric answering that question. But first Diabetes Connections is brought to you by Dario And you know, over the years, I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks, you know what I mean? That's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Daario diabetes success plan is all about you. All the strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions for how to succeed, get the diabetes management plan that works with you and for you. Dario has published Studies demonstrate high impact clinical results, find out more go to my dario.com forward slash Diabetes Connections. Now back to Eric talking about what hitting rock bottom with diabetes meant for him.

Eric Dutcher  13:35

Yeah, no. And it's funny people think of rock bottom as being something that has to be something physical or it has to be a specific point in time. And to me rock bottom is really just where you hit your lowest and you finally realize, wow, I'm no longer who I was.

Stacey Simms  13:53

You mentioned in one of the pieces that I've read that you spent a decade afraid of athletic events, as you've mentioned, until you caught the obstacle course running fever. Now I gotta tell you, I'm a mildly active person. I have never caught any kind of activity fever in my life. Tell me what that means to you. Why did you get excited and interested in what led to extreme sports from somebody who said you know, basically pickup basketball level?

Eric Dutcher  14:24

Yeah, well, I guess I could go back to my roots and preschool we used to have a mud day and you would make mud pies and you know, you would get your clothes all muddy. And I've just discovered that I'm an adult that believes other adults should play in the mud every once in a while. And you know, my wife and I took on a it was a race called a survivor race and it was a very small I think it may have been a five k may have been a three K and I'm not quite sure and you know, the fire jumped She had to do on it was basically a log that somebody had pulled out of a fireplace it kind of looked like

Stacey Simms  15:05

this race. I should I should find out what they do in this area I could I could train for three k with a jump over a log

Eric Dutcher  15:11

that's like an array. Yes, yes, it's a perfect gateway drug obstacle course racing. Yeah, so it was a small race. But by the end of it, and every time you went through a certain obstacle, when you get to the end of it, you feel like you've accomplished something, it's tangible. You've had parts in there that were more difficult. And that's really kind of the bug that got me was, you know, I'm a Dewar, I'm an accomplished her to a fault. And at the end of this, I felt like I had really accomplished something. And so once I'd done something small, I immediately took the opportunity to step in and do a tough mudder, which was much more difficult. And really going through that journey. Like, the first tough mudder. I did, I went back to Google, and I searched around and I found one person who had blogged about doing a tough mudder and how he prepared to it. And I kind of said, Well, I guess if he did it, I can't and as it turns out, it ended up being a super exciting experience, because also on my team was another type one diabetic who had done tough matters before, and a guy that had had a heart transplant. So you know, the joke is that, you know, we were the the medically special team, and we had the the medic crew all hanging around behind us just waiting for us to drop. And probably the funniest moment is a tough mudder has this thing called electroshock therapy at the end of it, which sounds completely awful. But it's basically you run through some dangling wires, and some of them are live and some of them are not. And it's just enough to where it's like ow that hurt and can cause you to trip. But wait, we had, you're making

Stacey Simms  17:08

that up, that you go from the little fireplace log to like a live wire zap. And this is fun. This happens.

Eric Dutcher  17:16

Yeah. And it is great, because you'll see, you know, there's tons of different tactics, people, I could kind of geek out about this, just because it is very unique in the obstacle racing space that you know, you got people that kind of go try to go under the wires or try to go around the wires and then tough mudder is really smart. And they make the wires a little bit longer at the end. So when you if you have been knocked down and you're in the muddy water down at the end crawling through, you're going to get zapped a couple more times. But what was funny about that first experience was we get to the end, you're between electroshock therapy and the finish line. And every with tough mudder. It's all about teamwork and challenging yourself so you can skip any obstacle that you want. But we literally had to talk the guy with the heart transplant off of going through electroshock therapy, but it was just kind of this bonding moment where you know, we had gone through everything together. And so Gosh, darn it, we were gonna go through this one too.

Stacey Simms  18:18

He didn't know did he? Did he do it? No. All right. Another dumb question. Because now I'm fascinated. Does anything like that mess with diabetes stuff like could it mess with a pump or Dexcom or you know, CGM,

Eric Dutcher  18:32

I have never had a device failure because of my crazy electroshock therapy. And actually, world's toughest mudder, the 24 hour event, there were three electrically related obstacles. And I chose to go that path rather than the non electrical path. But the equipment, I've never had a issue, and I haven't heard of anyone that can I think, theoretically, it could if it hit just right. But I always just carry backups to the events. And most of the time, anything with electrical stuff is is at the end of the race. And so you can adjust out for it.

Stacey Simms  19:16

I'm going to put a note in next time I speak to Dexcom. Maybe we can hook you guys up. And you can do some FDA clinical testing for the g7. As you go through the course.

Eric Dutcher  19:26

I'm always happy to be the lab rat. And as you can tell, I like mazes. Oh my goodness,

Stacey Simms  19:32

I probably should ask you let me I was going to move on. But with diabetes in these races, I know everybody is different. And we're going to talk about the diabetes sports project and how you want to help other people. But can you share anything that you have learned that has helped you because I have to imagine you spent a decade as you said thinking diabetes was going to stop you from being active. So when you started, that'd be a little fear there. I mean, how did you adjust in terms of figuring out how to manage while you did all this?

Eric Dutcher  20:00

It's a good question. So I actually spent, you know, 2019, I created something called Project mud. And it was more unstoppable diabetics. And it was really around, I flew around the country and to various cities and gathered up diabetics and showed them exactly what you need to do to get race ready. And a lot of it is just remembering first that, you know, we're human. And just like any other human, you just need to be able to, you know, get ready with some sort of training. And it doesn't have to be extensive, I think people overthink and think they've got to be trained up and ready to go, rather than just sign up for the race and let that be the reason for you to exercise. But when you think about whether you're diabetic or not diabetic, if you leave your house to go do a run, you need to make sure that you have the things with you to adjust to any changing situations. So even as a non diabetic, it's probably a good idea to carry a credit card or an ID with you, or cash in case you need, you know, you run too far. And you need to call an Uber home, you know, some sort of phone device. And really, once you realize that all doing something athletically with diabetes is making sure that you're ready to address things that might go wrong, then you can actually give yourself permission to step out and do pretty amazing things. And what amazing is is different for different people, I don't expect everyone to go out and want to run a marathon, some people just want to be able to run around the block. And I think you can do that. I think you just need to have a plan in place of Okay, do I have something that can bring my blood sugar up? Do I have something that can bring my blood sugar down? Do I have something that can test my blood sugar so that I know where I am in case being active? makes it hard for me to internally tell where my blood sugar is? Do I have water to stay hydrated? It's really it's funny, we I think we overcomplicate it. And it's because diabetes is complicated. But in the end, all we're trying to do is nudge ourselves back one way or another. And all you need to do is know how to nudge

Stacey Simms  22:34

you mentioned, project mud and the diabetes sports project. Let's talk about that. I was looking back through my notes. And I spoke to Casey porin from the diabetes sports project about a year after he founded it. I mean, we talked to him, I think in 2006, I want to say So tell me about your involvement, and what the diabetes sports project is hoping to do.

Eric Dutcher  22:55

Yeah, I ran into the diabetes sports project when I was just starting to get a little bit more involved athletically and I wanted to dive deeper with athletes that knew how to manage their blood sugars. And I saw a post about the diabetes sports project running the California international marathon in Sacramento. And I had not run a marathon at this point. But I thought why not. And I signed up and went to the event and met Casey and Eric Tozer. You know, the founders. And if you look at the diabetes forks project Foundation, what they're trying to do is really inspire people, those living with diabetes, to live an active lifestyle and encouraging and providing resources and also events where you can do that. And so the California international marathon was an example of one of these events where we ended up having 20 diabetics that were either running all or part of the marathon and they had set it up to where, you know, if you wanted to just do a half marathon you could or if you wanted to be part of a team, you could. So it was a very friendly environment. And around that. They also set up an event with the jdrf where families with kids can come and talk to diabetic athletes about how to be active with diabetes, as well as they were visiting some hospital or awards with children with diabetes. And so it's this great community resource of professional and really strong athletes that is really around educating and inspiring people to an active lifestyle. And I've been very excited to be a champion. They welcomed me in as a champion shortly Thereafter, probably the only mud runner champion that we have. I think there's others that like reading, mud runs for sure there's some on the books. But that being my primary passion, and I've enjoyed working with them, and I look forward to doing more with them.

Stacey Simms  25:18

And your role at the diabetes sports project is changing or has changed, you're going to be part of the leadership. Now, tell me about that. Yeah, I'm

Eric Dutcher  25:25

really excited. You know, Eric, and Casey, as well as Amy and Bradford, it's 100% volunteer leadership team, which is not something you'll always find in nonprofits. And because of that, there's been a limited amount of time that people can dedicate to it. And so they've invited me to come on as the Chief Operating Officer for the diabetes sports project. And I'm really excited about it, because I'm going to be able to add, you know, more time into that volunteer leadership team. And we've got some great things that we're going to put together this year, there's the group that is going to be cycling around Manhattan called the rebellion with with a cause that was set up by crag diabetes sports champion, and then we're working on getting together a camping trip for the Grand Canyon, that would also be a hiking event. So community plus exercise, which is typically what we like to do. And then I hear on the horizon, that we're going to have some members running the New York City Marathon in November. So really excited about what I can do just adding some additional time and dedication with the leadership team there. And we've got an exciting year coming up.

Stacey Simms  26:50

That's great. You know, I asked earlier, I mentioned earlier, everybody is so different in terms of how they manage diabetes during endurance, athletic events, or even during sports. I wonder though, if you might share a tip or two that has helped you personally. Do you have a way that you carry gels? Or do you prefer gels to I don't even know what y'all use? But is there anything you can share about kind of while you're doing these? What's made it easier for you, if that makes sense?

Eric Dutcher  27:21

Sure. I think the first thing that I always encourage everyone is start small. I think everyone some time ago, a lot of people they try to go big and they try to run you know a mile or 10 miles their first time out. So if you start small with a go a mile, remember that all your insulin action time typically is two hours out. So if you're going to reduce your insulin, make sure you're doing it two hours in advance. If you're doing like cardio, you need to reduce your insulin more than if you're doing intense cardio, which sometimes is counterintuitive. My gear that I carry, I tend to vary it based on how stable my sugars feel before I leave, but there's nothing wrong. Don't hate on the old glucose tabs. The glucose tabs are great because you can kind of break them up in your mouth and let them absorb through your cheeks and tongue. And probably my favorite tip is if you want to have a slow drip of glucose into your bloodstream, then pack a few gummy bears in your cheek and just run like a chip pump.

Stacey Simms  28:33

I love it. I have to ask. I've read somewhere that you have. Have you auditioned for survivor on CBS? Is that something you wanted to or something you did?

Eric Dutcher  28:41

Very accurate I have. So I first started training for American Ninja Warrior. And I did apply and put my video together and it actually featured some friends in London that were also type one diabetic, diabetic comedian and diabetic runner in London. I was not chosen for the show there. And I have yes I have applied three times now to be on. CBS is survivor and survivor. If you're listening, the time still is now you need to let a type one diabetic take on the greatest adventure show ever.

Stacey Simms  29:22

Have you heard anything from survivor? Do they have a policy against people with diabetes? Or is it by omission? I mean any idea?

Eric Dutcher  29:29

I have not? And that's actually a really good question. So I have not had a direct conversation with them. And I think that's really where this starts. I have been pushing for just the opportunity to have a conversation with them because it doesn't have to be like I just want a diabetic on the show. I would love to be the diabetic but I really want to open that door. Because I think if people saw that there would be a new level of appreciation for how far we can actually stretch. But there hasn't been a conversation yet. I'm looking to have that conversation. And there at one time, there was a very specific, you cannot do this with it. But I have not been able to read anything in the roles that specifically prevents a type one diabetic from being on the show.

Stacey Simms  30:25

I mean, come on, we've had people all over the Amazing Race and winners of The Amazing Race. I know survivors at different ages. But come on. All right, I'm, I'm pushing for that, too. Now, before I let you go, one of the things I wanted to ask you about, and I hope it's okay to ask, but this is your email, and I won't give out your email address. But it has wolf pack in it. And being in North Carolina, the first thing I thought of was NC State and you know, Wolf Pack. But that's not what it's about for you. Can you tell us about your wolf pack?

Eric Dutcher  30:53

Yeah, so we'll pack is a special way that we refer to our family, when my wife and I got married, I had three children, and she had two from a previous marriage. And we were blending our family. And in addition, she over the years had come close to and informally adopted another son. And so there were six of us, three boys, three girls, we were The Brady Bunch minus Alice nomade. But we really wanted something that was for all of us. And so many times people turned their last name as a domain name or an email address. And we had multiple last names in our family. And we didn't want to, we didn't want to lose that. We didn't want to single out one family over the other. And so we described ourselves and said, We are our Wolf Pack. And our Wolf Pack still exists as a website for us.

Stacey Simms  32:04

Oh, that's great. Eric, thank you so much for joining me come back on. We'll talk more about the sports project. And we'll talk more about survivor. And you know, let us know what wild long range athletic events you're doing. I'd really appreciate it

Eric Dutcher  32:19

sounds great. Maybe I can come on sometime after I complete the Iron Man and April.

Stacey Simms  32:24

Oh my gosh, absolutely.

Eric Dutcher  32:25

Thanks so much.

Announcer  32:32

You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms  32:37

More information, of course, at Diabetes connections.com. I'll link up the diabetes sports project. I'll link up Eric's social so you can watch him in that Ironman training that he's doing just a phenomenal guy to talk to. Although I'm inspired by him, I am not. I gotta tell you, I am not motivated to electrocute myself while running. That's not gonna happen. And if you haven't seen that picture, I will post it in the Facebook group. As I'm recording this, I think it's gonna be the cover. You know, I always have something for each episode that turns out to be the cover of the featured photo. That was fun, the website and it may just be that oh my goodness, but but good for him. Whatever makes you happy. Eric, thanks so much for sharing that.

We're gonna talk about spare a rose in just a moment. But first Diabetes Connections is brought to you by Dexcom. And you know, we started with Basal IQ. That's the G6 Tandem pump software program that came out a couple of years ago, and we really loved it. But I got to tell you control IQ has been absolutely amazing. Benny is 16 he's had diabetes, as you know, for 14 years and I gotta say, we have never done less work for better results. And I hesitate to say we anymore because really is almost all him at this point. I mean, I'm the mom, I nag and I remind but he's doing less work and getting the best results diabetes wise, his last A1Cs have been his lowest ever. His time in range is so great. It's hard for me to talk about sometimes, and I'm a superstitious person, I want to be careful, but this is the real deal. And I'm thrilled that we are able to use control IQ with the Dexcom G6 and the Tandem pump. Of course, individual results may vary. To learn more, go to Diabetes, Connections comm and click on the Dexcom logo.

I started releasing classic episodes this year. These are episodes of the podcast that aired in 2015 or 2016. And you may have missed the first time around. So last week we released one on spare a rose, but I just wanted to talk about it for a moment in case you missed that or you feel like you know what it's all about just for a moment here in the innovations segment. Because Spare A Rose is marking eight years which is pretty incredible for a small program. I think many people thought might be a one and done when it launched back in 2013.

So real quick, a spare rose is a program from the life for a child program, the International diabetes Federation basically helps kids around the world in under resourced countries get meters and strips and insulin and even education for their family. It's an incredibly needed resource and organization and sparrows is one of the ways that they raise money now, year after here. And the idea behind the name spear Rose is that on Valentine's Day, you would buy one less rose, one fewer rose out of a dozen roses, you would buy 11 and then donate the cost of that last rose that you spared to the charity.

If you want to learn more, I would definitely urge you to listen to last week's episode. In addition to the info, it's a lot of fun. We played a game and we were very silly, but I looked up spare arose. And my old blog, I used to write a blog and think about three people read it. But I looked up what I was writing about in 2013. And it First of all, this blog is heinous. I mean, it's just terrible. The picture is totally out of focus. You know, I'll link it up. But I don't, I don't know that I really want you to go back and look at it. But it was so fun. Because apparently, you know, Benny is in second grade in 2013. And we were writing out his Valentine cards. And that's what I wrote about Star Wars and Avengers Valentine cards. And I talked to him about this just tonight at dinner. And I was joking about it. And he said yes, it still very much matters, who would get Iron Man or Yoda as I wrote the book. And if you'd like to learn more about spear rose, of course, I'll link it up in the show notes, what I usually do is just give a couple of dollars every month and make it automatic.

I know this year, because we have said many, many times, you know, this past year has been very difficult for so many people. So if this is not something that you can currently donate to maybe just spread the word, you know, retweet, or share an image and tell your community about it, whatever you do, will definitely help. And I will link it all up at Diabetes connections.com, including some really good more current blogs and pieces about Spare a Rose in 2021.

Before I let you go, I have an event on the books. I'm so excited when this happens, because you know, most of us were traveling here and there and everywhere before COVID. And now when I have like a new zoom in a new place, it's very exciting. And big thanks to JDRF Tampa, who asked me to participate in their walk kickoff. So I'm going to be doing that on March 3, I will be linking up more information on social media and in the Diabetes Connections group on Facebook. So please check that out. And I love to speak to groups. I'm happy to help with kickoffs, if you'd like to learn more, you know where to find me reach out Stacy at Diabetes connections.com. We did not have a book tour in 2020. I would love to do that one of these days. But but certainly I'm available virtually to talk about the world's worst diabetes Mom.

I had a great talk. It was a very casual. And I just want to mention this here to kind of get the wheels turning within a closed Facebook group about camp and I'm trying to get this into an episode or a blog post. But it was about non diabetes camp. And you know, what do you do about sending your child assuming that camps are going to happen this summer, now is the time that people are signing their kids up. So I did an hour q&a with a bunch of moms mostly from New York, one of them was sending their kid to the camp I went to I went to camp French Woods as a child, which is a performing arts camp. Shocking. I know that I went to a performing arts camp for two summers, but I went away to camp, you know, my entire childhood. And I'm thrilled that my kids are able to do that as well. Benny is kind of aged out of his camp. And if they do it this summer, he'll be in Israel for a month, which makes me nervous, but he's going so you know, COVID permitting, but it was a really great hour of conversation. And so if that's something that you'd like to discuss, you know, we can always set up a call. It's mom to mom advice or Parent to Parent, you know, I'm not a doctor, but I'm happy to share her experience. So just putting that out there.

All right, don't forget we have another classic episode coming up this Thursday. Oh, we're talking to Sam Fuld. This is so great. So this is an interview from a couple of years ago with the Major League Baseball player now turned General Manager Sam Fuld. And if you didn't hear that interview the first time around. I'm going to bring it back out in just a couple of days.

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

Benny  39:19

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