Meet Leo Brown from this season of The Amazing Race! He lives with diabetes, but his story isn’t a typical one. Leo was born with congenital hyperinsulinism, where the body makes too much insulin, and had almost his entire pancreas removed. Leo will share his unique story and tell us about running the race with his girlfriend, Alana.

Learn more about congenital hyperinsulinism

In Tell Me Something Good, babies! Weddings! And a football first for someone who’s been kicking t1d every day for a long time.

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 One Drop created for people with diabetes by people who have diabetes by Gvoke Hypo Pen, 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  0:23

This is Diabetes Connections with Stacey Simms.

Stacey Simms  0:28

This week, meet Leo Brown, a contestant on this season of The Amazing Race who lives with diabetes. Now on the show, he's racing around the world with his girlfriend, Alana, but they had what could have been their biggest setback before the race even got started.

Leo Brown  0:42

I think I was actually on the flight to LA at the start line. When I realized I had left all my insulin at home. There was one thing I didn't remember it was in the fridge. It was lined up like little soldiers.

Stacey Simms  0:57

Oh my gosh. Well, Leo's story is not a typical diabetes one. He was born with congenital hyperinsulinism, where the body makes too much insulin and had almost his entire pancreas removed. He developed diabetes at age 19. And he'll share his unique story and tell us about the race

In tell me something good babies, weddings, and a football first for someone who's been kicking T one D every day for a long time. 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 love The Amazing Race. I started watching when I was pregnant with my daughter Lea. And that was 19 years ago, I realized that talking to Leo and doing this episode Oh my gosh. Anyway, welcome. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed almost 14 years ago, when he was a toddler. I have a background in broadcasting and that is how you get the podcast.

It has been two years since the last version of The Amazing Race aired and I really have been excited to see it come back. It's just great to see people traveling again. As soon as the first episode of the season aired in mid October, my eagle eyed diabetes friends started posting photos of Leo at one point he's playing the steel drums and you can clearly see the Dexcom on his stomach. I like many of you jumped to the conclusion that he lives with type one. But it turns out his diabetes story as I've already teased a bit is very unique. And we'll talk about that with him in just a moment.

But first Diabetes Connections is brought to you by One Drop. One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes. For people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, compact and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor's visit. Your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more.

My guest this week is Leo Brown from Season 32 of The Amazing Race. His partner on the race is Alana Folsom, they have been dating for less than a year when the show started. And they're now married. So we don't know how they did on the show. But that's a great outcome already. Leo and I recorded this interview over zoom and there is a video version which I've put on the YouTube channel. And that's just Diabetes Connections over on YouTube. But there's two things you need to know as you listen, the audio is a bit sketchy here and there, Leo and Alana upgraded their Wi Fi during the interview. Literally during the interview, she called and got the Wi Fi upgraded we stopped and started a bit before that happened. I took all of that stuff out. But you can hear some stuff here and there. And if you see the video, you will see the shirt that I am referring to as we start out here. But if you're only going to listen, I promise you will get the gist.

Leo, thank you so much for being here. I appreciate you spending some time with me tonight.

Leo Brown  4:23

Thanks for having me excited to have a chat.

Stacey Simms  4:26

All right. Well, first of all, I have to ask you about your shirt. Because I saw that hashtag on Twitter that you guys were using. What is beloved lovers? I wanted

Unknown Speaker  4:35

to hear you say it first.

Stacey Simms  4:37

Wait, let me do my radio voice! Tell me about – beloved lovers.

Leo Brown  4:41

Oh, absolutely. So Alana I got married over a month ago. And we have a Ketubah which is a Jewish wedding contract. And in a traditional Ketubah it says you know the man this and that husband this wife that right and We wanted our Ketubah to be egalitarian. And we didn't really see a need to indicate our gender. But that's not really what what relationship is about. And so we talked to our Rabbi who's extremely, you know, open minded and accommodating. And he came up with some text that is egalitarian. And the translation from Hebrew to English was beloved lover, and really like that. And so in the in the wedding, which we live streamed, because we couldn't invite most of the people we wanted to, because the COVID, he explained that and there was a live chat on the YouTube live stream that was happening, everyone was like, beloved lover, and then they started writing hashtag beloved lovers. And then I think somehow that got picked up by some news source that like follows Amazing Race, or it was like doing some promo about Amazing Race. And so when they were introducing the teams, and it was just this little this article that got that was going around, they said, Will and James dating Hung, and Chee married Leo and Alana lovers. And so our cast has all had already kind of decided since our wedding because they had all called into the wedding that we were having, like beloved lovers. And so we went with that. And this is our beloved lovers shirt on the back and says Leon & Alana, and a little globe, that is where beloved lovers came from our relationship and our wedding.

Stacey Simms  6:25

So okay, my husband and I have been married for 21 years. I'm making a note for our when we renew our vows for our tuba, maybe at 25. Oh, yeah, back and change the language

Leo Brown  6:35

as a couple that had to severely downsize our wedding. We are strong believers in renewing vows, or just having another wedding whenever you feel.

Stacey Simms

Well, you know, weird way you kind of put the honeymoon first with The Amazing Race. So let's talk about that. Because you both were I mean, I didn't know if I could ask you about your relationship, just because you're never sure on the show. I've seen I've watched the show for years and people are dating that they break up before the race even ends. Or maybe they stay together. Well, obviously, this had a really happy ending. But take us back to the beginning. When did you all decide to sign up for the race? You were just dating?

Leo Brown

Yep. So we met on Tinder in January of the year of the race. And then on our second date, I think we were watching The Amazing Race with my roommates at the time because they were fans and a lot. I was a fan and I hadn't seen an episode or two. And that was the first time when it was my roommates who said you better be great on the race. And I thought yeah, sure, I think we could be and, you know, nothing else really came of it. And then six months later, Ilana and I moved in together, I think it was our second night of living together when we had it. All right, let's make this video. Let's send it in. Let's see what happens. And that was in July. And then a couple weeks later, we got a call from casting. And then over the course of the summer and fall that we went to LA a couple times. And then the start line was our 10 month anniversary. So that was a that was a really fast and an incredible progression that we weren't expecting,

Stacey Simms  8:11

we will return to the Amazing Race to your relationship to your reading lots of questions there. But tell me about your experience with diabetes. Very unique. What happened? Tell us your story. Sure. So I

Leo Brown  8:23

can start long before I knew I had diabetes. Because I wasn't diagnosed with diabetes till I was 19. As an infant, though, I was diagnosed with congenital hyperinsulinism, which I always explain as kind of like the opposite of diabetes, instead of making not enough insulin, I made way too much. So it's a rare genetic condition that you're born with and usually presents at birth. And it's an emergency, once you're born, you have low low low blood sugars. And one of the biggest challenges is that doctors who delivered you and you know, like neonatal care doctors might not have ever heard of congenital hyperinsulinism. And to make matters worse, infants sometimes have low blood sugars, as like a natural and okay thing. And so many parents, including my own then are told initially some version of Oh, that's nothing really to worry about. And the story you hear time and time again from these congenital hyperinsulinism parents is I knew something was off like I'm not a medical professional, but my child needs help. And in my case, will that eventually led was to subtotal pancreatectomy ease. And so the first one was when I was six weeks old, and that was like 95% of my pancreas was removed a big scar across my stomach from that. And then when I was six months old, much of remained was also removed in a second subtotal pancreatectomy and after that, by the time I could remember, basically, I have like very early memories of my blood sugar being tested because my blood sugar was of interest at that point, everyone needed to know what it was and why it was okay. And for the first couple years, my parents had to do a lot to help manage that. And lots of doctors involved and try different drugs and eventually figured out something that could sort of stabilize my blood sugar and help me start to live a normal life. And by the time I could remember, I pretty much did live a normal life. You know, I went to kindergarten like any kid, I had a scar, I had a second scar from a feeding tube that was called my second belly button, because I have an outie. But then there was this any nearby. And as life went on, I felt very much like a normal kid who had this, you know, this complicated beginning, but I thought that was all kind of behind me.

Stacey Simms  10:56

But let me ask you before you go on, and I'm sure your parents have shared with you what actually happens when when a child is born with low blood sugar? Like you said, it's not as though something they're not often looking for that kind of thing. And it's extremely dangerous. Do they just are they poking your fingers when you're an infant? Or the you know what happened? Yeah,

Leo Brown  11:15

my parents may remember, even better memories than I do. But I know that you test a baby's blood sugar at, you know, most hospitals, good hospitals when they're born. So I mean, I think that tests This was 30 years ago. So longer, or like longer land sets, but generally a lot has remained the same in in that you test a baby's blood sugar. And if it's low, if you're lucky, someone says, Yeah, could be serious. It could be totally fine. But I think they had a lot of experience testing their tiny baby's blood sugar.

Stacey Simms  11:54

Did you go I guess my question is, did you go home? And then have these emergencies where you had to be re, you know, brought back your parents didn't know what's going on? Or did they know before they even left the hospital?

Right back to Leo, answering that question and explaining more about congenital hyperinsulinism. But first, Diabetes Connections is brought to you by Dexcom. It's hard to think of something that's changed our diabetes management as much as the Dexcom, share and follow apps. The amazing thing to me is how it's helped us talk less about diabetes, that's a wonderful thing about share and follow as a caregiver or parent, spouse, whatever, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom, follow separate follow app required, Learn more at Diabetes connections.com and click on the Dexcom logo. Now back to Leo, who by the way, has a great Dexcom story later on in the interview. Oh my goodness. But here, we are talking about his parent’s early days of his very scary diagnosis.

Leo Brown  13:04

I believe my parents didn't have a clear diagnosis before I was discharged at the very beginning. And then within weeks, if not days, I was brought back, you know, they said he's having, you know, he had a seizure. He's not getting better, like this low blood sugar thing is, is here to say and I I'm again, my parents would have a lot more to say. But at some point, they were equipped with a blood sugar testing kit to you know, check me regularly at home. But I think that within those first couple of days and weeks, they quickly discerned that something was off. My parents used to have this box and at some point I said I need the box because once in a while I need to be able to explain to people not in an interview, but in a doctor's office what exactly happened. But yeah, it you know, it from what I know congenital hyperinsulinism and other stories I've heard from other parents, honestly, that I can tell you as much about that as my own early early story. The prevailing pattern is that the parents are told that the low blood sugar is not something they need to really worry about, because babies have that sometimes. And right, a large part of what the community and an organization I'm working with congenital hyperinsulinism International is trying to help medical community understand is you need a checklist saying this could be congenital hyperinsulinism. Obviously research for early diagnosis, treatment, but early diagnosis is in some ways more important because if people aren't looking for it, then it is a you know, it's a very rapid escalation. As you can imagine. It's just like if you were getting injections of insulin that you didn't ask for.

Stacey Simms  14:54

Yeah, scary stuff. Yeah. So you have these operations. You're growing up just fine. But you have been told your family's been told that you will eventually most likely develop type one diabetes or something that's very similar.

Leo Brown  15:06

Actually, that didn't become what people were told until more recently, this, I think, has to do with better research and sort of documentation about the progression of the disease also, as early treatments have become more effective, and there's still a long way to go there. I'm you know, most people don't get to go to kindergarten like I did without some sort of special needs. Or even just like having a continuous glucose monitor, right? You might not be I mentioned special needs, because like, as soon as your blood sugars are low, you could have that could affect your brain in some way. But also, even if you don't have that consequence of the low blood sugars, you might still have a lot of trouble controlling your blood sugar's early in life or throughout your life. And so the fact that I didn't have any of that, from nursery school, kindergarten and on through the beginning of college is sort of unusual. But to your question, my parents were not told that I would get diabetes, part of the reason, I think is because my pancreas was making so much insulin, there was a thought that removing just the right amount would lead to me being just fine. Or, you know, you might not remove enough like, I might still have low blood sugars, like there was no assumption that I would have diabetes, although my understanding is more recently, that's become more of a an assumption that like you do this type of operation. And then no one knows when, but eventually you will have diabetes,

Stacey Simms  16:38

or and now I have one more dumb question or the surgery for we move on. I know, everybody wants to know about you, and the Dexcom and The Amazing Race, right. But I'm so curious, we think about the pancreas, and I think most people in the diabetes community understands that it's not dead, you know, it didn't stop doing everything it's supposed to do. But we don't think about it as doing anything much more than producing insulin, you have like this much of a pancreas left, and you have been living this happy, healthy life, even though we're gonna talk about your diagnosis. Are people generally surprised when they hear that it's, it's more of an education for you to do? Because I gotta tell you, when you told me that, I thought that's not at all what I felt what happened?

Leo Brown  17:13

Yeah, I wish I could read the logs of my pancreas to tell you exactly what it's doing and what it's failing to do, like if you were trying to debug it. And, you know, there's not an easy way of getting in there. And and finding that information. I mean, you really would have to, you know, I engage any doctors I encounter and try to get those kinds of answers out of them. Like, what is it that my pancreas is not doing? Like, I know, it produces all sorts of hormones, other than insulin, I don't have the background to even ask the right questions, right. But all I can say is that with a little bit of pancreas, you can get a little bit of function. And I guess enough such that I don't I'm not diagnosed with anything other than diabetes. But it is a great question. And there's not a ton of patients to do this research on. Nor is it something that you'd want to interfere with someone's life to do research on, like, you were to poke around in there, like you could cause a problem. So on some level, you kind of just keep an eye on it. But one thing I do quickly want to add is that my parents and I, after I was diagnosed with diabetes, we were really kind of kicking ourselves like, doesn't it make sense? You took my pancreas out? Why didn't anyone mentioned that? This could just it seems like common sense. I mean, not I'd never thought about diabetes before. But my parents had certainly thought a lot about blood sugar. And they were like, course, like diabetes?

Stacey Simms  18:43

Nah, I gotta say, in everybody's defense, I think I would just be very happy that my baby who was going super low, all of a sudden, they figured out was wrong. They fixed it. You went to kindergarten, if the doctors aren't telling you why we're going to

Leo Brown  18:57

we think, clear. And you know, we weren't testing my blood sugar after I was, you know, in first or second grade, like and, and there's no indication that there was any need to at that time, no symptoms. Yeah.

Stacey Simms  19:10

So what happened? Did you go to college and start having issues or did it come suddenly. So

Leo Brown  19:14

I went to college, I look back and I wonder when the symptoms really began. But by the time I was diagnosed, I was working. I was with summer after my freshman year, I was working at like a family run vegetable farm in the Berkshires in Western Mass where I was in college. And I thought I was you know, I'm a pretty fit person. I'm not a college athlete. And I was with a couple of college athletes on on this farm. And so that was what made me kind of doubt that will maybe I'm not cut out for this. But long story short, I couldn't really make it through the day. There was a moment I remember where I was trying to get into the pickup truck that we were driving around, and I could get in but I had to like I would just like go put my hands on the wheel and just use my arms to just like, drag myself into the pickup truck. And that was odd. I'm not used to having that much trouble with something that seems simple. Why wasn't I using my legs? Right? I probably was, but it was I wasn't using my body the way I normally would. And then I also, again, no surprise to the community, I had to pee all the time. These guys I was working with were thinking like, what's wrong with Leo, like, all he does is go to the bathroom. And he's not very good at any of this manual labor. And I was starting to think maybe I just am sickly. I'm just someone who is not as fit and capable as I thought I was. You know, I'm not one of these college athletes. So who knows.

So I went home for a couple weeks, I said it was a vacation, you know, I'd kind of plan to take two weeks off at some point in the summer anyway, I was at my girlfriend's house at the time hanging out with her and her family, just in the living room, really low key, like someone was watching TV, someone's reading the newspaper, we might have been playing board game, and I was just lying on the floor, basically, I would only get up to go to the kitchen and get like a tall glass of milk. And I think I went through an entire gallon of milk. And then I you know, I was like super comfortable in this environment. So I wasn't pretending to feel any better than I was. But I also wasn't, I wasn't unhappy. I just had no energy. I was like, I was completely down for the count. And her mom is a scientist. And she said, You're not well, and you should go to the doctor, you should go home and go to the doctor. And I did and they tested my blood sugar. And it was 650. And so that was you know, right away, they put me on insulin. And skipping forward a bit. I went back to the farm Two weeks later. And they were astonished by like, I'd gained 20 pounds back. I had an I could do stuff. Do you remember how different you felt? Once I was on insulin right away? I had, yeah, like 10 times the energy, things felt easy, I think is the biggest thing. Like I wasn't unhappy. I just was confused by why I couldn't do what the type of thing that I thought I would be able to do. And again, I'm not. I don't think of myself as physically fit first and foremost. So in the back of my mind, I was always thinking maybe I'm not as fit as I thought I was versus an athlete, student or professional, who would sort of automatically know my performance is going down like something's wrong. I didn't think that.

Stacey Simms  22:33

All right, well, that's a fun way to start talking about the amazing race. Because I have been watching this show for I realized recently 19 years. And I've always thought, oh, that'd be so fun to do. And then I remember each season, why would never succeed, because the athletic ability you need just to survive and run from place to place is unbelievable. So I have lots of questions from listeners. I have lots of my own questions about the race. But the really the biggest one we get is, you know, how do you manage diabetes in a situation like that with travel and running? So if we can ask, we all saw you with the Dexcom while you're playing his steel drums and episode one that got everybody's attention and diabetes,

Leo Brown  23:12

even I didn't notice that in the clip.

Stacey Simms  23:15

Do you do if you don't mind it? Again, this is kind of personal. Do you take insulin pens? Do you use a pump anything like that? Yeah,

Leo Brown  23:21

I've tried different things over the years. And again, because my diabetes isn't type one or type two, it's hard to sort of draw comparisons. But the number one thing I do to manage my diabetes is through diet. So I eat a very low carb diet. And that is something I've always tried to do as much as I can have over the years. And at times that's enabled me actually to get off of insulin. However, there are so many variables. And on the race, I was not on regular insulin prior to the race, but I brought insulin on the race and had to use it in particular, because I would encounter food situations that I would not have chosen. And I also just didn't know what I was going to encounter. And that was also why I had the Dexcom, which I had. Well, I shouldn't say that's why I had the Dexcom. I've been using the Dexcom for some time. And that is also part of what has enabled me to kind of use insulin as I need it more recently, just to provide a little bit of context. When I was diagnosed, I did use Lantus and homologue, kind of a traditional prescription of insulin, as I discovered that I could use less insulin, if I ate fewer carbs, I over time would sort of rebalance my insulin with my diet. There are times that I wasn't using the insulin that I should have been. And I would sort of tell myself that I didn't need it. And if I didn't test my blood sugar, then I couldn't prove that I needed it. And then more recently, since the race and I'm not sure if this is you know an age thing or like an age pancreas thing, I have found that it's sort of floating higher Even with like, when I'm sure I'm, and legitimately, perfectly executing a low carb diet, and it's higher than I would have, you know, not high like 121 3140. Like, I wouldn't see the numbers like that if I had everything else controlled, and yet, somehow I do. But then if I start running more frequently, it kind of goes back down. So there's all these variables.

And for the race, when there's so much that I can't control, I knew the Dexcom would be a CGM in general would be crucial. And having insulin available would be crucial. So I didn't want to go with an omni pod, because I got a couple of infections, actually, from the site, not saying that Omnipod, but just in general, like, I don't have a ton of body fat. And so like, I think there was just the wrong spot. And that can happen with any device. But for the race, I really want to do avoid that kind of thing. That's the sort of thing that could have actually put me out of the race, you know, if I had like a real infection, and so what I ended up bringing on the race was syringes, like old fashioned syringes with a vial of human slug. And the reason I went that route, actually, is because oh, no, I actually think that was just all I had at the time, because I had the syringes around for the token like a true diabetic. Yeah, I had the syringes and they were around from the Omnipod.

And then I have to include this, which I had forgotten about, but we were at the hotel ready to go, you know, we're not sure when this starts going to be. And I think I was actually on the flight to LA at the start line. When I realized I had left all my insulin at home. There's one thing I didn't remember, it was in the fridge, it was lined up like little soldiers. So there was a whole production of gold, having someone having a production assistant go to Walgreens, like paying out of pocket, months later figuring out reimbursement. So that was it was a major part of preparing for the race.

Stacey Simms  27:05

Okay, I have to tell you, I have so many friends with so many stories of forgetting insulin and for getting supplies you have just made our day. So thank you for acknowledging that you're human. Oh, yeah, that's crazy. Oh, you went over here. So the other question was, this question kind of comes from the food? I thought I knew the answer this after all the years, but I wasn't sure. How do they feed you on the race? We see the crazy food contests. What are you eating day to day? And then the question was, how did you manage that?

Leo Brown  27:31

Yep. So I only ate in between legs. Mainly because I didn't want the distraction the production, the possible possibility of a higher low blood sugar during legs. Now keep in mind, I was not using a basal insulin at this point. And so I didn't really need to worry about my blood sugar floating low unless I had a short acting insulin in my system. And with the adrenaline happening during the race, I did not feel the need to be eating. And then in between legs, teams stay in a hotel, the race provides food. I'm being a little careful, because we're not supposed to talk too much about behind the scenes stuff. But what I'll say is that, you know, the food I would ask for I would eat what I could have it. And if I needed more, I would ask for more. That brings me to the topic of what I generally which is if you gave me a slice of pizza, I would eat only the top. In fact, that's a business idea that one of the other teams and I the blondes and I want to start pizza tops. I know we haven't made any progress on that. But like pizza tops, very delicious. Sometimes you can even find someone who's lactose intolerant, and you split the slice of pizza horizontally. So that's the kind of food strategy or trick I would use. There was food available to all the teams and sometimes I would have to ask for a little bit more to make sure that I can eat enough. Okay,

Stacey Simms  28:57

I am a Jewish mother. You were not super hungry during the race. I mean, again, I know we can't we have to be very careful. We don't know how far you got. We know you've got through episode one. But I'm thinking even an episode when you were swimming. You were running around or playing the drums. It's a long day. We don't have to eat a whole lot of adrenaline.

Leo Brown  29:16

And I you know, I always had a bar. I always had sugar tablets with me. So I should point that out. But you know, your heart's racing. You're competitive. Your adrenaline's high. And on that note, you're probably going to ask me about this. My blood sugar went high from that. Yeah, right. So like my blood sugar shoots up when I play coed softball in a league, you know, that I pay to be here. Right? Like it's not a competitive situation. But like, you know, The pitcher winds up. I'm at third base and like my heart's racing, and then I look at my Dexcom later and my but the first time this started happening, I was so confused. I know. I didn't eat anything like and yeah, so that happened a ton during the race to the point where I didn't Security actually said the security staff was who was really tasked with sort of keeping an eye on me from a medical perspective. And they, they would say, like, you can't let your blood sugar get that high. And I would say, well, like, Yeah. Like, what? Also what do you want me to do take insulin? Like, I don't think you want that. It'll go back down pretty quickly when I calm down, but right now, yeah, like, I've always found it's not worth trying to treat the adrenaline highs, because then I don't really under like, I can't do the same calculation around eating something like, How high is it gonna go? How excited was I? Like, how long will it last? Honestly, I've thought about trying to control that sort of thing through mindfulness, or meditation and sort of just like slowing down my adrenaline in general, although I don't want to change who I am as a person and you know, being hated about things. So that's a trade off, I guess.

Stacey Simms  30:55

Yeah, I think adrenaline highs from sports is just something that most people with diabetes that I know learn to figure out and kind of work around and not dose for, as I said, because you it's it's so tricky tolerate, um, time zones came up, too. But since you're not dosing basal insulin, that's not really a question, right? I mean, time zones, I assumed would affect you, but not really in the same way as someone was dancing that way. What

Leo Brown  31:17

Yeah, I didn't go space all during the race. And I think time zones affected all of us in an odd way. But, you know, we weren't sleeping in 24 hour cycles, we were sleeping during breaks between the legs, and the legs were not, you know, they didn't start when the sun came up, and when the sun went down, so yeah, I don't know. I mean, I think if I had been dosing basal, I would have had to just, you know, set a timer and decide that's when the next day began.

Stacey Simms  31:46

All right, any tricks and tips to keep your Dexcom on? Did it stay on in the water? Did it stay on with the sweat? And the reason the whole thing? That was what I was thinking about?

Leo Brown  31:54

Yeah, incredibly, it did. Since the race, I've gotten more experience with using the Dexcom and have started to use three M tape. And at this point, I just put it on preemptively. And aggressively. So it's like all over the site. I was, I think, kind of lucky during the race, the biggest issue I had with a Dexcom. And this gives you some insight into like the level of excitement and my state of mind was, at one point, we were on an airplane, and I was checking my blood sugar on, I actually was using, not my phone, but the little device that it comes with, because we didn't have our phones. So I was fiddling around with this device. And my mind's racing a mile a minute, right, like probably the entire race. I mean, to like, say, exit out of the part of the app that I'm in. And I decommission the sensor. Oh, no. Unlike the I was installing the sensor, no, I installed the sensor. And then I said the sensor is over right. Now, it is not possible to reverse that. And I was so distraught. And olana pointed out at that moment, that I had brought four sensors for 30 days, because I brought an extra and that was when I used the extra. At that point. I didn't have an extra. But at least I had that one. That was like, I don't know if there was a moment in the race when I was more horrified then when I installed Dexcom and then immediately decommissioned it.

Stacey Simms  33:32

Oh my gosh, yeah. I think a lot of us have done that. You guys were very early in your relationship, as you said. Very brave thing to do. exciting thing to do. Did you have fun? I mean, you're married.

Leo Brown  33:44

Yeah, we had a lot of fun on the race. It was also I will say a very stressful experience in general. You know, our first time on TV, you know, we really wanted to keep racing. You might have noticed in the first episode, we were on the second flight, we were in 10th place at a certain point, the oil drums were huge and hard to handle. The fish numbers challenge was horrible. Try remembering for numbers and the numbers were okay. But the colors. The problem with the colors is that what are you reading the fish nose to tail left to right, like you flip it over upside down? Right? It's sort of like you can reverse the fish in all different directions. And we were just like, really, things were not getting any easier. And then the skill drum challenge Fortunately, I felt pretty comfortable with so that was Trinidad and Tobago, and we had a blast, but we also had a lot of anxiety. You know, as far as our relationship, I think we kind of knew what we were getting into, in a way. I mean, I suppose it was more intense in many ways than you could have imagined. But we knew we wanted to do this big adventure like we knew it was a once in a lifetime opportunity. We wanted to travel we wanted to get to know each other. We wanted to get away from our jobs like It was a no brainer. And I think that our relationship from day one has always been that we want to do things together, and not like shy away from experiences. And we're just both wanting the same thing out of life in so many ways. And so it would have been against our nature to hesitate to do this thing together.

Stacey Simms  35:20

So this was taped in 2018. This is pre COVID. But this is a long time ago. How hard is it been? I mean, I don't know exactly when it wrapped up, or if you know, when it ramped up production. But how hard has it been for you guys to sit on this for all this time? You can't say anything?

Leo Brown  35:35

Yeah, it's been a big secret. And it's been a huge relief to share. We were able to share with close family, initially, MBAs, everything we couldn't share with work, we couldn't share with friends, we couldn't share it, my friend who was house sitting for us. And we have been able to stay in touch with the cast. We're really close with the rest of the cast. The fact that it took so long to air is I think part of that, like we've had a chance to see each other go through stages of life together. A couple of them were at our wedding, everyone else was live streamed into the wedding. So having the cast as sort of a support system through this has been really huge. It's just a Yeah, it's a huge relief to be able to share that. That's unbelievable. And I have to say, just watching the first episode, and I haven't watched the show in a few years. And now I'm back in I'm very excited. Good. But it was a joy. Great season. Well, I'm glad to hear it. But I gotta tell you, it was a joy to see travel. It was exciting to see the world again. escapist is voyeuristic. Yeah, it's, it's what we need right now. Of course, being able to see myself through those things is a trip and feel so great. But also, you know, just being able to see people interacting, like we used to, I'm sure there's going to be some airplane footage. The first episode was notably absent airplane footage, which I think everyone was sort of would you know, that's what you want to see right now is like everyone like squeezing onto a plane. But there will be some of that the carnival in Trinidad. Imagine, you know that today? You want to see that back to the way it was, when it can be. But yeah, I do think it's the perfect show to be airing at this time, unlike Big Brother, where you're locked in a house. And it's kind of the same as you know, you get everyone tested, and then you can be in the house. But the race is obviously the opposite. And we are we're all hoping they'll be able to you know, keep running it again soon. You know,

Stacey Simms  37:39

I I would like to know, and I, again, I've watched the show for 19 years, you know, what's the crew? Like? What's it like traveling with those other people that we never see?

Leo Brown  37:48

Yeah, first of all, the crew is many in number. And they're an integral part of the experience. They are supportive. They're excited to be there. They do incredible physical things with you know, 50 pounds of equipment, trying to keep up with us. We're trying to go as fast as we can. And then they're, you know, jogging alongside us. They haven't a job that is would have been hard to imagine. I mean, now I've kind of seen them do it. But you know, they travel around the world. A lot of them work on other shows. Some of them have been doing the race since the beginning. And now we follow a bunch of them on Instagram, and they all post great photos of their non office jobs. Like to them

Stacey Simms  38:28

you've got the goats, right, and you're running to the mat. Where are they? They're behind you. They're in front of you. They're trying not to get trampled by goats. I mean, it's got to be an incredible skill on their part to

Leo Brown  38:37

Yeah, so also keep in mind that there's equipment like drones that they can deploy. So generally speaking, 90% of the footage, I would think is from a person carrying a gigantic camera, just running around. But if you think about like the water challenges, actually, I think they've had cameras on boats, you know, I probably shouldn't get too into that. You'd probably just do drones. Yeah, sometimes it's

Stacey Simms  39:06

drones. And what's Phil like, Phil is nice. Don't tell me if Phil isn’t nice.

Leo Brown  39:10

No, feels great. Phil is just like he is on the show. Except if anything quicker wittier than you might expect, like none of it's scripted. As far as I know. He's really fun, really warm, and he wants us to do our best. You know, one thing I did want to ask before I let you go, I found you on Twitter because someone in the diabetes community was talking directly to you and saying, Hey, we watched the show. My daughter just got to Jack's calm and saw you with yours on TV and it made our night. You are while of unusual case in the diabetes community. You are in the community now. And I'm curious what that's like for you. When you see people reacting so positively and so excited to see you on the show. I was definitely surprised that people picked up on it right away.

You know, I didn't see the Dexcom in the episode. And it's an incredible feeling to have that be an inspiration for people. And I know how I felt when I was first diagnosed with diabetes. And I didn't know what I would be able to do, it took me some time to realize that I wasn't going to get a break from it. And to kind of there's the diagnosis, which was a relief, actually, because then I could do things that I wanted to be doing and thought I could be doing, I just, you know, they told me, I just have to do this and that, and then I can live my life. And then it was probably a couple months later, where it sort of hit me that, you know, I wouldn't be able to go back to the way it was before. And I remember my sister who's a couple years older, she was watching this happen. And I was a freshman in college, I just finished up freshman year of college. And I had to I realized, and especially because I was making such an effort to manage with diet, I realized like, I wouldn't be eating birthday cake, I wouldn't be eating a hot dog button. And the way she saw it was that I had to grow up really fast, because I have a sweet tooth. Like I love candy. And I don't eat cake. I mean, I eat dark, dark chocolate, but I don't eat candy. And oh, what I'm about to go make for myself after this interview is a hot chocolate, which is made of half and half and cocoa powder, no sugar, and I mix it together and I heat it up in a saucepan. And it gets like to be to me indistinguishable from like a chocolate syrup that I want to drink. But it's got no sugar. So I recommend that. Anyhow, I'm on a tangent. It's really exciting to me to be able to hopefully, give people who were in my shoes. I think the person who commented that was her daughter's first couple days with Dexcom. So I remember what that was like. And on one hand being really hopeful that I had a solution for myself. But on the other hand, accepting that, you know, there were real compromises. The solution was not one that I was always going to love. But for the race, those are solutions that helped me run the race. Yeah.

Stacey Simms  42:13

Well, I can't thank you enough for jumping on so quickly for sharing your story. And for being so open about everything. And thanks for hanging through the technical stuff, too. I appreciate.

Leo Brown  42:24

I think we got a lot I got us a Wi Fi upgrade in the course of this interview. So she's she's busy. Behind the Scenes love it.

Stacey Simms  42:32

Yeah, I appreciate you doing that so much. So look, we'll check in. We'll see how it goes. And maybe we'll follow up. But thanks again for spending so much time with me. Okay,

Leo Brown  42:42

thanks a lot, Stacey.

Announcer  42:49

You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms  42:55

More information on the foundation that Leo talked about. I will also link up stuff on hyperinsulinism. If you'd like to learn more, all of that at Diabetes connections.com. Click on the episode homepage where there is also a transcription and I'll put a link into the amazing race because they've got some cute behind the scenes videos each week. And oh my gosh, I hope they win. You know as we're taping this, the second episode hasn't even aired yet. So I don't know if they've made it to the third episode. And but you know how this works. You've been with me with other contestants. We've had people from the Titan games and from the baking shows the Food Network kids baking show, American Ninja Warrior, you know, the Christmas light. We've had people from all different reality shows and you never know but it's always great to talk to them and just making it to the show is a pretty incredible achievement way. I hope they went Tell me something good coming up in just a moment.

But first diabetes Connections is brought to you by Gvoke Hypo Penn and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's where GMO hypo pen comes in. It's the first auto injector to treat very low blood sugar Gvoke Hypo Pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies 99% of people were able to give 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 should not be used in patients with pheochromocytoma or insulinoma visit Jeeva glucagon.com slash risk.

Tell me something good. This peak is full of weddings and babies and celebrations. Congratulations to so many people in the community who took a big step this month. Rob Howe got married in early October so congratulations to Rob and to Erica. Rob is the founder of diabetics doing things the host of that podcast and and so much more. It is Rob that he's my Instagram guru, but I'm so bad at Instagram. I once I think I once was it Rob I once called him through Facebook messaging or Instagram messaging, I don't even know. I don't know how I did it. He was so polite. He was so nice. I felt like I was 75 years old. It was, it was not great. But congratulations to rob and Erica, who had a beautiful backyard wedding, you know, as we have to do these days, we wish them many years of health and happiness.

Congratulations to Patrick Mertes, who had a baby with his beautiful wife, Patrick is one half of the team that made up 50 and 50. And these two guys who decided to go around the country last year, and climb the highest peak in all 50 states and try to do that in 50 days. And Patrick completed it Michael, his partner had an injury, halfway through and completed it. But later on, they did something else recently called race along the trace, which was three states. And 460 miles, it looks like a bike ride. He called it the last hurrah before fatherhood. So we'll we'll catch up with him and talk about that. But Patrick is also the director of the diabetes camp where my son goes every summer. So we are excited to see how a camp guy tackles fatherhood, I'm sure he's gonna do an amazing job because he's corralled all those kids for all those years.

And finally, congratulations to Ken Rodenheiser, who also had a baby in October. He's a pediatric CDE in Philadelphia, and I think it's at the hospital where he himself was diagnosed years ago. But he has been a very big part of the children with diabetes organization and the friends for life conference. I believe he leads the tween program there, Ken and I have gone back and forth for years about getting him on the show. And we will work it out very soon. But I just wanted to highlight him in this segment and say congratulations to him and his wife and their babies name is Elliot, this adorable little girl.

And I just realized as I'm reading this, I didn't put two and two together. But my next Tell me something good is also an Elliott. But this is Elliott Fry. He is the former kicker and all time leading scorer for the University of South Carolina, he lives with type one. And earlier this month, he kicked his first field goal in the NFL for the Atlanta Falcons in the Carolinas. Elliott is very well known for working with kids for being really out front with JDRF. And just being you know, out there as a great role model and example of somebody who plays sports and plays them at the highest level with type one. So it was really exciting to see him get that very first field goal in the NFL. And that's Tell me something good.

Do you have something for me send it my way, Stacey at Diabetes connections.com. You can also post in the Facebook group, you don't have to have a baby or get married. It can be as easy as your son or daughter did their first sight change, without crying and running away oh my goodness, that used to be such an ordeal with Benny, anything that feels momentous anything you want to celebrate with the diabetes community, I would really love to know about you can go ahead and tell me something good.

It's hard to believe that it's going to be November in a couple of days. And I know we're all stressed out about the election and the possible aftermath. But it's also diabetes Awareness Month. And I don't know how that's gonna get any play this year with everything else that's going on in the world. But I'm gonna try and I always say diabetes Awareness Month is for the non diabetes community. I mean, we're aware every day of the year, this is our chance to educate. So I have a few things in mind to try to get the word out in other media. And I won't be talking so much about that here. But I'll share if anything exciting happens. But I am going to be doing two different things. If you're on Instagram, I will be having a contest I'm probably gonna start that the second week of November because I want to get past this election to that's just going to be a fun giveaway, to celebrate each other to be part of diabetes awareness. It's going to be fun and easy. I have some great companies lined up already that want to donate stuff and give it to you. I mean, you work hard all year round. Let's celebrate a little bit.

And we have a big episode milestone, the numbers I'm so excited to share this with you. The second one is going to be on Facebook only. So we're going to have an Instagram only and a Facebook only. And the Facebook is going to be a little bit more work on your part. But the prize is going to be bigger, that one's going to be a cash prize. So I will keep you posted. The best way to keep track is to be in the Facebook group. Or to subscribe to the newsletter. If you're not already subscribed to go to Diabetes connections.com the cute little please sign up should pop up. But if it doesn't just scroll all the way to the bottom and you can sign up for the newsletter right there. So two contests coming up. I want to make it easy for you. I think it's gonna be fun. We just need a little brightness around here. And I hope I can provide some of that.

All right thank you to my editor John Bukenas from audio editing solutions. thank you as always for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

Benny  49:46

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

Halloween can be a challenge for many families touched by diabetes, but just imagine beng diagnosed ON Halloween. That's what happened to Kelly Kunik in 1977. In this "Classic" episode from 2017, Kelly shares her story, her family's unique experience with diabetes, and what led her to beginning her blog, Diabetesaliciousness, in 2007. 

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

Join the Diabetes Connections Facebook Group!

Listen to our "Ask The D-Moms" episode with advice for parents about Halloween.

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Episode transcription:

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by the world's worst diabetes mom real life stories of parenting a child with type 1 diabetes available as a paperback ebook and audiobook, read reviews and get your copy today at Amazon or at Diabetes connections.com.

Announcer  0:24

This is Diabetes Connections with Stacey Simms.

Stacey Simms  0:30

Welcome to what I'm calling a classic episode of Diabetes Connections. This interview originally aired Halloween week of 2017. But it's a really good one. And we have a lot of new listeners and a lot of people who might discover it now for the first time. So if that's you, Hi, I'm your host, Stacey Simms and my son was diagnosed with type one almost 14 years ago as a toddler.

And Halloween this year is going to look very different just like everything else in 2020. But I hope you find a way to celebrate Halloween that is safe, that feels good to your family. And as always doesn't let diabetes get in the way. If you have questions about Halloween, if you are newer diagnosed family or you just are confused, you want to try something new this year. We did a great ask the D moms episode about that. And I will link that up in this episode homepage, you just go over to Diabetes connections.com. And when you see this episode, click on it and it will have a transcript and it will have links and one of those links will be over to that ask the D mom episode where me and my friend and wonderful author McCarthy give advice. We get questions all the time and we answer them the best we can we did a whole episode about Halloween.

My guest for this episode is all about Halloween. Now. Not only was she diagnosed on Halloween, but she loves the holiday you're going to hear her family. I mean, they do it up big and they always have Kelly Kunis was diagnosed with type one in 1977, 43 years ago. And yes, you really was diagnosed on Halloween. She is a diabetes advocate mythbuster consultant, writer and speaker, Kelly launched her very funny and insightful blog diabetes deliciousness in 2007 with that goal of busting diabetes myths and spreading validation through humor and ownership and advocacy. She is also a daughter, sister, cousin, niece and and to people living with type one and type two diabetes. That incredible family experience really gives her a unique perspective. So here is my interview with Kelly Kunic on the eve of her 40th diversity with type 1 diabetes.

Kelly, thanks for joining me, you're one of the things I get a lot in parenting groups that I'm in is you know, what do I do about Halloween? And so we're gonna be talking about that this week. But I thought it would be really fun. And so just a good excuse to talk to you. To find out more about being diagnosed on Halloween. I shouldn't have said it'll be fun. It's always fun to talk to you, Kelly. But that's not fun at all. Thanks for coming on with me.

Kelly Kunik  3:11

Well, thank you for having and thank you for doing what you do. And I think Halloween is an excellent topic.

Stacey Simms  3:18

Yeah. Tell us your story. You were diagnosed. And I can't believe as we're talking here. You're kind of on 40 years for your diagnosis.

Kelly Kunik  3:25

Yes. Yes, I am. And that's crazy. And I can't believe it. And I just as shocked as you are. But yes, it will be 40 years with, you know, celebrating my type 1 diabetes diagnosis on Halloween. And it was interesting. And what I remember a lot of it, tell us, I just remember a lot of whispering that week with my parents and my siblings. You know, I have siblings who, who also have type one. And my dad had type one. And, you know, Halloween every year was a pretty big deal in our house. And it was up to my siblings to come up with my Halloween costume. or help me come up with it. Because there were so many of us. And I couldn't get them to commit. And I remember coming home from school one day, and my sister Debbie, who had diabetes and who had passed away from diabetes met me at the door. And she asked me if I was thirsty. And I was of course, and she gave me a tab. And I download it. And then she asked me if I wanted another one, which of course I did. And I download it. And then she asked me if I wanted another one.

Stacey Simms  4:44

And we're talking about tab the diet soda because just to be clear, right? I mean, right?

Kelly Kunik  4:49

That right tab the diet soda and I drank the third one and then of course I had to go to the bathroom. And she said well drinking I'm not going to let you go to the bathroom, unless you pee on this test tape, which was a way back in the late 70s to test what your sugar was. And I was smart enough to know that that wasn't a good thing. Because there was test tape in all of our bathrooms, because of my two sisters with type one and my father, and I looked at my sister and I told her I didn't have to go to the bathroom. Oh, geez. And I was a pretty stubborn little girl. And I refused to go to the bathroom for like an hour. And I was dying at that point. Like I literally was doubled over in pain, but I knew that something was up and that if I peed on that test tape, something was going to happen that I didn't want. And I finally you know, I did I like I said, I would do it. And it turned to color it shouldn't have.

And there were lots of whispers. And I remember my parents being on the phone with CHOP children's hospitals, Pennsylvania that night. And it was the night before Halloween. And I don't really remember a lot. But I remember the next morning we got up very early. And we drove to Philadelphia to CHOP. And I remember waiting in the registration office to register because as a patient because we'd never been to chat before. And then the physical exam. And I remember them hooking me up with an insulin drip. And I was trying to make my parents laugh. So I called it the Alaskan pipeline. Like luck bomb. It's the laughter pipeline. Look at me, I have my own Alaskan pipeline. But I really wanted to go out trick or treating. I wanted to go out and costumes, you can talk of all these different costumes I could wear and I love Halloween. Not just because the candy. I love dressing up in costumes. That was kind of my thing. As a kid. I was always dressing up in costumes, like if I could have gone to school in a cape. But back in the 70s it wasn't really acceptable. I was constantly dressing up in costumes. And I tried to convince a nurse who was dressed like a clown, that the results were inconclusive. Again, I watched a lot of television

Stacey Simms  7:25

you're waiting to hear. You're eight years old. You're trying to tell that the medical professionals around Yeah, because maybe it's not, you know?

Kelly Kunik  7:32

Well, I I used to watch Quincy, on answer Carol Burnett. Yes. And so I was I was just like, repeat everything that Quincy would say, I'd like to think the tests are inconclusive. And he just let me go out trick or treating. I promise you, I won't eat any candy. And my parents will bring me back tomorrow. But I have all these costumes lined up. And she looked at me and she said, Oh, honey, the tests are inconclusive. You have diabetes. And no one had said that. I said, Oh, okay. I guess I have diabetes, like okay. And I didn't really think that's when I started not to like clown so much. Yeah, and I remember them telling me that I could go trick or treating in the hospital. They could provide me with a costume, which was subpar. There was no way I was walking around in this costume. They had no creativity behind them at all. And then I could only get dietetic candy. And I was like, nope, no, thank you not doing that. I know what that is because of my sisters. There's no way I know, your stomach. You know that? What does to your teeth? I'm not doing it. And so I stayed in and watch TV, you know, and kind of waited till my parents left to lose it a little bit because they didn't want them to get upset. I could tell that they were upset and I didn't want them to get any more upset.

Stacey Simms  8:55

Tell you so much to talk about that you've said already here. But it strikes me now you've said a couple of times that you're trying not to upset your parents. You know, I mean, you were eight years old at the time, your perspective is different. It's your dad has had type one. You had other people in your family, sisters, other people in your extended family. Why was it so important to do you remember, it's just amazing how we try to protect the people around us. They didn't mean protecting you did you're though, you know you were the little kid.

Kelly Kunik  9:21

I think I knew from a very early age. I was one of six children. It was not necessarily a common household. You know, the six kids there were two parents. There were various extended family grandmothers great uncle's living with us, which was wonderful. It was a great way to grow up, but I knew the diabetes. I didn't know exactly what it was. But I grew up with it, if that makes any sense. And I knew there was a stress level involved with it. Even though I didn't understand it. I knew that some of my siblings and my dad would take needles at the table. Before they ate, I knew that our bathrooms were sort of set up like a lab with test tubes, and things like that, because they didn't test blood sugar back, then they tested urine. And your insulin was very, very precious, and a bit expensive. And I just knew that I like to make people laugh when they were stressed. And I think when you're the youngest child diabetes or not, that's kind of the thing. Just sort of become the comic. Because everybody's watching what you do. You're the youngest, baby. Oh, isn't that cute? She's so funny. You know, and I knew I couldn't articulate it. And I couldn't explain it. But I knew that it was big for my parents, this diagnosis or whatever was going on, because I couldn't even articulate it like I am now. But I knew that I knew they were sad. And they were trying to act like they weren't. You know what I mean? And I knew that for a fact. So I was trying to make it easier for them. And look, kids are smart. They just are, and they see, and they handle things in certain ways. And, you know, when you see your dad who's, you know, trying to keep it together, you want to make it easy for him. Especially when it has to do with you.

Stacey Simms  11:24

It just, it's amazing to me that and you're right kids know, they are much smarter than I think we give them credit for and even Benny at two was trying to make me feel better. You know, it's as hard to see your parent be upset. And that's it. You know, a kid wants to fix that most of the time. So even he do and that's what it is. Yeah.

Unknown Speaker  11:42

So So what happens on a Halloween,

Kelly Kunik  11:44

I stayed in and watch TV. I mean, I, I wasn't going to go out trick or treating in the hospitals. I had to have diet like guy they called it dietetic candy when I was throwing up. It's what it was called. And it was disgusting. And it caused a lot of gastrointestinal distress. And they had something like a jolly rancher type of dietetic candy that would make your teeth stick together. For like, five minutes, while it melted in your mouth, you could not separate your jaw. And I'm not kidding. It's God's truth. And it just wasn't worth it to me. I had tried this stuff, because my sisters would get it in their Easter baskets, or, you know, family friends would bring it over for them. And it was disgusting. And you know, when you're little, you don't know the difference. And you're like, oh, Chocolate, right? And it really did cause a lot of problems. And I knew that. Like, I mean, you learned it very young. Yeah, I didn't even have diabetes learned it is not good stuff. So I was like, I'm not a I don't have my costume choices with me. I'm not wearing these drugstore. Like I have a closet full of homemade patterns that are very good. And I'm not chick retreating. And working so hard for this disgusting candy. Most of it

Stacey Simms  13:10

was it was Halloween. Was Halloween ruined for you or the following year? Don't you dig out one of those costumes if I wake up?

Kelly Kunik  13:19

Oh God, I went to I never missed a Halloween growing up. The rule was like every other kid, I will give that credit to my parents. I never missed the Halloween. I went out with my pillowcase. Because that helped more. And we trigger treated for hours. I would eat some candy while I was trick or treating because we were walking like three miles. And then I came home, went to the living room, dump the pillowcase on the floor. Did the division like all the kids do? Candy? Like they like candy. They don't like candy. They would consider trading money. Because people would throw in nickels and quarters, boxes of raisins, which immediately hit the trash. And my mom would say, yeah, it's I mean, it was like any other thing. My mom would say, okay, what's the candy you wouldn't keep? And she would keep it. And we would figure it out like when I could have it. And then in a week or two, somehow that Halloween candy would disappear. Sometimes my mother would hide it after a few weeks in the top of her closet, or on top of the china cabinet, which kind of dipped in so you couldn't see what was laying on top she would put it or those cabinets on top of the refrigerator that holds nothing and are really hard to get to. But after a few weeks, just slowly disappear. And she'd say your your siblings ate it. Daddy must have gotten into it. You know my mother was a Chocoholic. I mean, but we always had fun. I always went out with my friends. And I give my parents a lot of I remember going to like Halloween party. somewhere maybe in fourth grade, I don't remember. But there was a cake. I think my mom even brought it. I think my mom bought a cake was ghosts on it was a big deal. And the ghosts were made out of icing. That was toothpicks. And I remember like, I won't want to go, but they didn't see I couldn't. And that was really smart of them. They didn't make it a bad day. They made it a fun day. It was a fun day. Halloween fun. They kept it that way.

Stacey Simms  15:28

Just wonderful. And it's just so great to hear. Did you have a favorite costume over all those years?

Kelly Kunik  15:33

Except that oh my god, are you kidding me? I was a gypsy, which was actually my mother's mother's costume from a Gilbert and Sullivan. Oh, she was an orator in England. So I had this beautiful like corseted top, that all the girls were in my family. And we I was Gypsy and I had a scarf and a big skirt. I was tigerlily for like two years in a row three years in a row. Maybe because I was obsessed to Tiger Lily did not like Wendy Darling. I could not relate. I thought Wendy Darling was a whiner. He thought Tiger Lily was a badass. And she kind of looked like me a little bit long, dark braids. And I have long dark braids. But she's who I related to. And I was her for two, maybe three years. I was a jack in the box. One year I won an award for that. most creative con. So yeah, I mean, I love Halloween. I don't. I think it's a great I still think it's a great holiday. So I don't know. Yeah. And I don't like when people and I understand why they say it. I shouldn't say I don't like but I always tell people to mine their words, when it comes to diabetes. Like Don't let your kids know that you're dreading it. Because it really is a fun hot day. But it's great not to be you for a night. You know what I mean? diabetes or not? Like it's going to be a challenge. But today they give away much more prize related gifts today than they ever did when I was growing up. And look, we are black that we can count carbs today. Nothing is off limit. Well, let's

Stacey Simms  17:12

talk about that. Let's go on. Let's just you know, we'll get on the soapbox for a minute because Kelly people who know you sure you have opinions. opinions are welcome. I have a radio friend who says agreement is not required. So let's let's just talk about it. You can say whatever you want here. Because as a parent of a kid with type one. Halloween is is scary and is your oh my gosh, everything's got to change. It says how do I do this? And then I have actually found if I could talk about me for a minute. The hardest part for Halloween for us has always been my well meaning neighbors, because I have a daughter who's three years older than Benny. And since the time they were very little we did Halloween just like you guys did. We get all the candy we put most of it away even without diabetes, you're gonna throw half that candy away or give it to the truth is the dentist or whatever. So my neighbor's bless their hearts. You know, those first couple years, they would say here's a Hershey bar for Lea. And here's a sugar free hard candy for Benny, you know, like, Oh, right. And I'm not letting my two year old eat a hard candy anyway,

Unknown Speaker  18:13

but Right, right.

Stacey Simms  18:15

Yeah. And some of them did have little prizes. I mean, I have one neighbor who always has a little toy for him. Like, you know, Penny toys is so cute and so nice. And I never said to people, you know, at the door on Halloween. No, thank you. We're not taking that sugar free candy. But you know, maybe a couple weeks later, when you're seeing them at the grocery store elsewhere, you can kind of work it into the conversation. But I always tell parents just go and like you said, you're walking so much half the time that they go low when they're out there, right.

Kelly Kunik  18:44

Yeah, I mean, like when I said I walked three miles at night, my hometown was only a mile long. Again, like, not really big, but we walked so much and for so many hours that my parents encouraged me to have that Chocolate bar because they knew I really needed it and I wasn't you know, when I was little to treat a low we would eat an orange. My mom didn't even bother cutting and wrapping an orange in tin foil. She said no, she's going to have she's gonna have a Reese's Peanut Butter Cup and she's walking around because she's gonna need it. But like you I still get asked you know, can you eat this Is this okay? And I always tell people like there's not too much I can eat I don't eat liver. They won't eat liver. So

Stacey Simms  19:28

not even with not even Chopped liver. No,

Kelly Kunik  19:32

no, I don't like it and you know, I know that I probably should like it because I run a little bit on the anemic side. I have my whole life but I can't stand liver. But yeah, I'm like the only thing I can't eat is liver. You know everything else is Game on. Oh, and like you said like diabetes or not divide the candy up and somehow it disappears the next few weeks because nobody functioning pancreas or not eating all of that candy. Just Can't nobody can adult child a child with diabetes, don't diabetes, anybody, people, it's just too much sugar. But, you know, I'm sure you talk to your neighbors and tell them something similar because I don't know, it's really great to have people thinking and looking out for your kids. But sometimes what they're trying to do like, for me, personally, I think there's a lot of damage with the sugar alcohol, like gastrointestinal is not damaged. But

Unknown Speaker  20:31

that's what I always trusting. So

Stacey Simms  20:34

I want to try to tell other parents Look, the way I handle it is just, you know, you don't say don't do this, you say, please do that, you know, you say, oh, wasn't Halloween fun? Hey, you know, we're trying something new this year, or maybe a couple of weeks before, you know, my doctor says, even if your doctor never says, you know, my doctor says that it'll be really fun and easier for Benny, if he just gets all the regular candy. And then we figure it out at home. Because right, sugar alcohols aren't good for him, or, you know, it's just better to have the real stuff. And but thanks so much. So just nothing special. And we'll see it in a couple of weeks of Halloween. And that way, nobody feels bad. You're not saying you know, hey, you bought us that candy, and we never ate it. And it made him poop for three days, you know, we're never not doing that.

Kelly Kunik  21:13

You know what it's expensive to that's the thing like here, people are really looking out for you. And right, and your child and spending more money than they should for very little bit of candy. Because, you know, a sugar free Chocolate bar or whatever. And it's expensive. So

Stacey Simms  21:34

I'm thinking here, we're talking about trick or treating, which I put all the costumes and everything. But it's been 40 years, if you don't mind me asking you to reflect on that a little bit. Something has diabetes never change. I imagine some things have changed quite a bit. You know, your bathroom probably doesn't look like a laboratory with those test tubes. Are you doing any reflection with the shear?

Kelly Kunik  21:54

You know, I am. So much has been going on in our world lately. Like I was gonna, I really wanted to do it up right for my 40th. And so much has happened over the summer and in the fall around our world with the elements and things like that last night I yesterday, I was working all day at a fundraiser for Puerto Rico, that I haven't really gotten it together to have this huge celebration I wanted to have. And five years ago when it was my 35th I was smack dab in the middle of Hurricane Sandy. Oh, right. Where I was where I lived was hit very hard from Sandy. So again, everything sort of went to the wayside. So I think I'm gonna do something for the year, as far as reflecting, because it's not just going to be about the day, a year of reflection, and bringing it into the 41st. year. I mean, quite, quite honestly, when I was little, I didn't necessarily think a person could live 40 years with diabetes, you know what I mean? Like, but I don't think as a child, you don't think that far? Know what I mean? You're just very immediate in the now for the most part, because that's what childhood is. It's the now. Yeah, I mean, I look back and I, I can't believe it. You know, I can't believe it's been four years, I can't believe all the changes, I can't believe I started with this journey with people who aren't here anymore. And my family, that makes me sad. But I try and live and be positive for them. So that's good. I mean, I just want it to be a good year. And I want it to be a great life. And, you know, we take the good and the bad, right? vinegar with the sweet. So there are days I get annoyed with it. Don't get me wrong, but I really try and focus on the positive because if I, if I let it bring me down every day, then what kind of life is that? You know, any mean? Any it's not going anywhere? So I like to say some days I'm in charge other days, diabetes in charge, like, some days we're both kind of like co executives of Kelly Punic Tony beam. Yeah, you know, there are days where I'm the CEO, and there are days when diabetes is nipping its heels and trying at my, you know, like, No, I want to be in charge. But I try and work with it as much as I can. You know what I mean? Because I don't want to hate it. There are moments when I dislike it intensely. But I don't want to hate myself. I can open up any magazine, and that tells me I'm not tall enough. Not skinny enough. Not busty enough. That's really easy. You know if he hated my diabetes, and I would be hating me, and I don't need that. I'm awesome.

Stacey Simms  24:53

You are awesome. But I have to ask you before we wrap up here, tell me about your blog, because I'm good. I always mess it up. Diabetesaliciousness. So where does that come from? And I love it.

Kelly Kunik  25:06

Okay, first of all, I'm such a dork. It was supposed to be called diet. I was supposed to be called diabetes-licious. Now when I started blogging, which will be 10 years in November, Oh, great. Go figure that one out. I had no idea what blogging was. Okay? None. It just looked like a Word file. And I could do a Word file. I couldn't create a website. That makes any sense. Oh, yeah. And blogger was essentially a fancy word file, right? He could upload pictures too. And there was always this thing I'd say, Oh, so diabetes-alicious. Like if I went surfing, and I got out of the water, and my blood sugar was like 125. So I can go to low diabetes-alicious. Or if I went out to dinner, and I had a big dessert, or maybe it was dinner in an Italian restaurant, which is always a bit of a challenge for me, pasta wise. And I checked my blood sugar a couple hours later, and it was like 170 like, Oh, that's fabulous. I nailed it. So it was always kind of a goal. Diabetes-alicious is always a goal to achieve was always just hitting the norm in my life, doing my normal everyday things, but celebrating it, you know, again, if I eat a pasta dinner, and two hours later, I was 175. That's pretty. That's like Nirvana. You know what I mean? Oh, yeah, totally Nirvana. It was diabetes. Delicious. And so I started to fill out the blog information that I wanted to do. And at the end, right before I hit Enter, I put the n e s s so made it diabetesaliciousness. I changed it. Because let's make it more difficult to say and pronounced. Why not? Again, I had no idea what I was doing. The only blog I'd ever read was Perez Hilton. And I didn't even know it was blog. I thought it was a gossip website.

Stacey Simms  27:02

And it's hard to imagine, right? But in 2007 we weren't even on Facebook. I mean, you know, it was so different.

Kelly Kunik  27:11

It was so different and I had now I can't change it. And I even change it on the business cards I had printed up I actually put Diabetes-alicious people are like what so if Diabetes-alicious never like diabetes, delicious. ness. Or you could just say Diabetes-alicious. I mean, I know it's a bitch to spell. It's my own fault. But it was 2007. I didn't know what I was doing. the interwebs was a new and exciting place. I didn't know there was a diabetes online community. Seriously. I had no clue.

Stacey Simms  27:46

Why did you start that? What made you jump in?

Kelly Kunik  27:49

You know, I had last a long term relationship. And I'd love to career. And I believe it or not, I wanted to sell insulin pumps, right? Because I really felt like my I had been pumping since 2002. I come from a family of sales reps, and performers, to basically like there's no doctors or lawyers in my family. We're all like salesman, performers, for teachers. And I was always the example that doctors would use, like, you got to meet this patient. She's doing really well. My doctors would have me talk to teens. And parents would stop me when they would see my insulin pump at the drugstore and haven't talked to her children. And I thought I really felt like insulin pumping changed my life. And I thought, well, I want to sell these things. And I sent my resumes out and nobody would talk to me. Nobody. And I had a marketing background and a writing background. I worked for several local newspapers and magazines, and I was a writer. And someone had mentioned blogging, or personal journaling. And I thought, oh, okay, hmm. And then of course, there was the whole like, a celebrity said they wean themselves off insulin and I got really mad at that particular celebrity. And I started this blog and then didn't know what I was doing. And I ended up calling this celebrities publicist in the LA in New York often, and I think I frightened the gatekeepers so much at both offices that the publicist ended up calling me back. And we played phone tag, and I ended up speaking with the publicist and saying, look, I think so and so was misdiagnosed. And this Oscar award winning person can be misdiagnosed how many other people can be misdiagnosed, and I really do think that's the case. But I was also upset because I knew of several young women with diabetes Lamia, whose parents had mentioned And this particular celebrity, as someone to aspire to. She has type one diabetes and look how great she's doing. And when I tell you I used to have parents come out of the woodwork and still do to talk with about their children to me. I mentioned that to the to that publicist, I said, Look, I don't know if you're aware of this thing called by Alenia. And it's very dangerous. And it's detrimental health, mostly it's women, young girls, and women with Type One Diabetes. But, you know, I know that young boys and men are awesome. And anybody can have it, you know what I mean? And so there has to be a better way to articulate that. And I really think if she came out with a statement, and again, I'm not blaming this particular celebrity, I think that's on the onus of the publicist. And she just wouldn't budge. And it got me so angry. And I think that was my first blog post. And I didn't know what I was doing. I just used it as a writing exercise every day on a subject that I knew intimately. And nobody read it. Except my friends. And I can tell you, the first person to leave a comment was Bernard, Errol. And that was like two and a half months after I started blogging, and I didn't know that this community existed. And when I found it was pretty life changing. So I'm very lucky. You know, but I had no idea what I was doing. I certainly wouldn't have made such a crazy name.

Unknown Speaker  31:40

Right now.

Kelly Kunik  31:43

Like, I had no idea. I just knew it was this great outlet for me to get all my feelings out. And I didn't even realize how badly I needed that until I started doing it. Yeah, we should I learned so much.

Stacey Simms  31:59

Oh, of course. Yeah, let's circle back to Halloween. Because there's so much we can talk about in Kelly, I'll have to have you back on. But let's circle back to Halloween. Because, you know, we're talking about food and food issues, and everybody has food issues anyway. And then if you have diabetes, it's a more food issues on top of food issues. So if you're talking to people who want to trick or treat or parents of kids, and they're worried about this holiday, any any last advice here on just kind of keeping it fun. And making it as normal as it can be?

Kelly Kunik  32:30

for Halloween is a great holiday. It's really fun. It's an imaginative holiday roll with the imagination part of it. If you have more than one child, the rules apply for all you know what I mean? You can have a little candy while we're trickers reading, you can have a CHOPolate bar, whatever I know, a lot of you know, we have our check stations, right? Check our blood sugar's if you're on a deck, it's a little easier, right? On the Dexcom. So that makes it a little easier, and really enjoy the moment and don't dread it. And if you're going to dread it, don't dread it in front of your kid. Especially your kids with diabetes. Like Don't do that to them. Because they can't necessarily differentiate that you're dreading the diabetes aspect of it, and they're gonna internalize it and take it personally. Does that make sense? Oh, yeah. It's just like, it's like, children don't understand when you're upset at the number on the meter screen. They think you're upset at them. Okay, so what happens? You find ways to change the number. I did. And, you know, I went and check my blood sugar with one hand, the number would be lower. You know what I mean? Like their kids can't tell the difference. Whether they're 10 or five, they can't tell the difference. You're mad or you're upset. I should say you're upset at the number on the screen. They think you're upset at them. They are diabetes. I mean, I do. They're dying. Yeah. And I think it's, yeah, and it's, it's so important for parents to know, at least I think it is that you got to put your game face. You can say, I'm going to be up checking all night. This is crazy. Don't say it in front of your kid. Don't say it in front of your kids. Just do it. Just do it. Like, honestly, that's not fair. And I know, parents, they go through a lot with this disease. I saw what my parents went through and they didn't have the technology nor did they have this supportive community. I don't know how they survived. But you got to keep your game face on. You got to make it fun. You have to make it fun. And just do what you have to do and that your kids take part in it. Hey, look, could you do me a favor? Could you check your blood sugar? Like, let them participate? What's the carb on that? Do we know the carb? Here? It's on my phone, look up my list, like something like that. You know what I mean? where, you know, kids like to help? You know, they have to know this stuff, too.

Stacey Simms  35:16

Oh yeah, we're on. So what do you do for Halloween? Do you still get dressed up? Do you

Kelly Kunik  35:21

know? I did last year I wanted to Abby from NCIS was really fun. Great costume. I've done that a couple years ago, cuz it's just so much fun to wear. I don't know what I'm doing this year. And again, because I've been so focused on what's been going on in our world and healthcare and things like that. And hurricanes. I haven't had a chance to focus. You know, I'm hoping I can get together with friends, at least. And then we kick off into world diabetes day. And it's a really big whirlwind for me, I hope to do something fun this year. And I haven't been thinking about it. Because there's been so much leading up to this where I'm living like I said, it's the five year anniversary of Sandy's on the 26th I want to say, and they're still part of my town where like, people are trying to get back in their houses their homes. Yeah, so the past few years, it's been a little bit. My focus has been split. Which is good, because it's not all about me, even though it totally should be.

Stacey Simms  36:28

Well, well, let me make it about you. Because we're airing this show. As we're talking here, a little louder. This, but we're airing the show on your 14th die aversary. So from all of my listeners, to you, yeah, we're sending you a gift now we're congratulations. Thank you so much. Well, I'm gonna put this all over social media. And at least we can give you a big Halloween. Congratulations and way to go and everything else because it should not go unnoticed. I just think you're wonderful. Kelly, you do so much good for our community. Your is so much fun to talk to. I hope

Kelly Kunik  37:02

you have a great Halloween. I hope you did, too. And thank you so much. I will go have a glass of Prosecco for sure. And I will toast it your way. And I will tell you what in the DSC because honestly, I can say it's the best medicine and I am so grateful to be part of it. And you do such a phenomenal job. It's just so fun. And voc is amazing. And I really feel like sometimes when nobody else gets it, I just know that I can turn to my community. And you guys get it. And I don't even have to utter the D word. to just be like, Hey, guys, I need your vibes and I get it. So I appreciate it so much. And I love everyone and I love what you do. So keep up the great work. And hopefully we can all have a little celebration together soon. Thank you for doing this show though. I think it's gonna be wonderful and help a lot of people and as all your shows do, and Iraq.

Announcer  38:09

You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms  38:15

If you haven't read Kelly's blog, now you have to right go head over to Diabetes connections.com. I will link up diabetes maliciousness in the show notes. And I'm just so happy to bring Kelly and her story to a new audience a couple of years later. So we'll see what the reaction is to these classic episodes. I'd like to start releasing them doing things like this regularly in the new year. So let me know. Have you heard all 330 plus episodes of Diabetes Connections? Or have you joined us more recently, and you're looking to catch up by you know, having something like this come right to you. Because that's what's nice about these classic episodes, you don't have to search for them, they will come right to wherever you listen, whatever podcast app, they'll come up as new. And I think that'll really give some new life to these episodes that I love and are so dear to me. And our newer listeners haven't had a chance to hear. So I'd love to hear from you. Let me know what you think.

Our regular episode is coming up on Tuesday. We drop episodes generally once a week on Tuesday, with bonus episodes here and there. And I am talking to Leo brown from The Amazing Race. You may have spotted his Dexcom and the episode that aired that very first episode of The Amazing Race. There was a racer, he took a shirt off there was his Dexcom and the diabetes community lit up so I was able to get in touch with him. We had a great conversation, and that is coming up on Tuesday. 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 on Tuesday. Until then, be kind to yourself.

Unknown Speaker  39:56

Diabetes Connections is a production of Stacey Simms media. All rights reserved all Wrong avenged

This week Ask the D-Moms is back, answering a very different kind of question. How do you know what diabetes news is reliable? Moira McCarthy and Stacey both have backgrounds in professional news media. We’ll talk about medical studies, news sources and, community & social media info.

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

In Tell Me Something Good what do prescription swim goggles have to do with diabetes? Nothing really, but it ties into a new realty tv contest where we spotted a Dexcom.

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 One Drop created for people with diabetes by people who have diabetes by Gvokek Hypo Pen the first premixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

Stacey Simms  0:27

This week, ask the D moms is back answering a very different kind of question. How do you know what diabetes news is reliable? Moira McCarthy and I both have backgrounds in professional news media. We'll talk about news sources, medical studies. And as Moira touches on here, community info.

Moira McCarthy  0:47

When you're delving into that kind of anecdotal sharing, everyone is right, and everyone is wrong. Some things speak to some people and some things speak to others

Stacey Simms  0:59

in Tell me something good. What do prescription swim goggles have to do with diabetes? Nothing really. But it's all about a reality TV contestant you're gonna want to follow.

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 so glad to have you along. I am excited about this episode I love every week, of course, this one where more and I get to break down from our personal experience, what we think of what's going on news business, how you can better use information. This is right in my wheelhouse. And it's one of the reasons why way back when I started this podcast,

hey, if you're new welcome. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one, almost 14 years ago. And it was really almost six years ago that I decided to start the podcast and did a lot of research. And it really took me until almost a year later to get it going. We started in June of 2015. But what brought me to start the show was that I listened to a lot of podcasts. I've listened to podcasts since I don't know 2005 2008 way back when when you had to actually plug your iPod into your computer and download the shows. And if you don't know that's where podcast comes from the actual iPod was the only device you could do it on way back when and I'm sure somebody with Android will correct me and it was all about mp3. But you know what I mean? That's where the word comes from.

But I would walk my dog and drive in my car and listen to shows with people who had incredible personal stories about diabetes. There were so many really good personal experience shows people talking about their diagnoses, just talking about day to day some technology stuff, but nothing that was a conversation that was from more of an informational standpoint. You know, it was basically nobody was asking the questions that I wanted to ask personally. And the great thing about podcasting is, if you don't hear what you want to hear, if you notice something is missing in the niche, or the community, you can jump in and start your own show, which is what I did. Of course along the way, I give you a little bit of personal information. Although the show is definitely not all about my family.

I have been mentioning lately that we were supposed to go see Benny's endocrinologist and we went in the beginning of October, then he had his lowest A1C ever, which is of course fabulous news. If you are new to the show, we started the control IQ system from Tandem in January. And we have watched him spend more time and range with less work all year long. It's really been amazing to see I give him a ton of credit. Of course, he still has to do a lot of hard work that goes along with it. He is far from perfect. God forbid I say nice things about Benny. But really, he's doing great, but it's still really is a lot of work. And you know, you have to wear all the devices. So I give him a lot of credit. I give all of you live with this an awful lot of credit, you know that. But boy, it's amazing to see that time and range go up, and the actual bolusing and the nagging for me down. It's been phenomenal. He also grew a little bit more, which makes him very excited because he is afraid he is done growing. Of course, he's been taller than me for a while now.

We also talked with the endo about insulin. And if you've been following on social media, or if you're in the Facebook group, you've seen me talking a little bit about this switchover, my insurance has us going from Humalog to Novolog. And I'm going to talk about that at a different episode. I did hint about that in the bonus episode I put out last week and I'm not trying to be cagey. But I want to give you the total context. There's a lot going on with this. And I want to make sure I get everything right and get all the ducks in a row before I tell you the whole story, which is a good segue into news and to sharing a good and accurate picture. So I promise more to come on our insulin front as soon as it all wraps up, fingers crossed. All right.

So with everything that's going on these days, I thought a show about news and information how to know whether your source is reliable. are worth listening to her, okay to ignore would be very timely. We're really only talking about diabetes news here. But that's almost more difficult because it's one of the few conditions that you can think of where we rely so much on community support and information from each other. Because we get so little time with health care professionals and diabetes is 24. Seven. And while so much of that peer to peer and community support is wonderful and helpful and is supportive, a lot of it is inaccurate or outdated, or it doesn't apply to you, or it is actually harmful. So we're going to talk about it. Of course here to join me on Ask the D moms, as always is Moira McCarthy, a fellow diabetes mom, of course, and a fellow news professional, if you are new, we will also tell you about our backgrounds and why the news media, which everybody hates right now is so important to us.

But first of Diabetes Connections is brought to you by One Drop, and it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it is the slickest looking and most modern meter My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime, instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention, they're awesome test strips subscription plans, pick as many test strips as you need, and they'll deliver them to your door when dropped diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo.

Hey, Moira, it's always great to talk to you. How are you doing?

Moira McCarthy  6:39

I'm doing pretty well. It's always good to hear your voice how's things down in the warmer part of America, I am looking out at the beginning of foliage. And all day here in Massachusetts. I always

Stacey Simms  6:50

laugh because I am in Charlotte, North Carolina. Growing up in the New York area. I grew up just outside of New York City and spent a lot of time upstate New York. It's so funny here because there is beautiful foliage in places. But the season is so different. The first year we had kids and I wanted to go apple picking. I was all set in October. I was like cuz I spent you know, my childhood, going apple picking in October and the crunchy leaves and the crunchy apples. And they were like no, no, you have to go apple picking in August.

Moira McCarthy  7:16

Oh my gosh, that makes sense. Like that.

Stacey Simms  7:21

It is but it's gross. wants to sweat while you're picking apples. Yeah, no, no. But I'm glad New England must be beautiful.

Unknown Speaker  7:29

And as it's my

Moira McCarthy  7:32

favorite season, it's one of my favorite seasons I enjoy.

Stacey Simms  7:37

All right, so interesting topic this week. And we're gonna stick on one question pretty much the whole time here on the D mom's. And that's about news information, how we know kind of who to trust in this community? How do you know what information to trust? And before I ask the actual question, I think it's important to back up and kind of talk about our experience, because I think it's one of the reasons why we're friends. Moira, and I have an awful lot in common, including working in the news business more, take me through your your experience. But I mean, all kidding aside, you've been a journalist for many years.

Moira McCarthy  8:10

So it's funny you asked because I was visiting the Newseum, which was a wonderful Museum in Washington, DC that just closed down about the news industry. They have a whole of technology, like all the technology from the beginning of time, and I said somebody's daughter, oh my gosh, I'm so old. And I've been a journalist for so long that I've used three quarters of the hall of technology. But I am, you know, I just want to start with that. I think it's if it's okay, I think it's really good to kind of stick up for my profession right now. Because it's been a rough couple of years, I guess. Now I know what it's like to be a lawyer. You know, I've run you always say the lawyers were all liars. But um, journalism for people like me, is a vocation. It's what I always wanted to do. And when I went to college, I didn't just learn how to write, we learn how to it's called the canons of journalism. And we actually learned how to be responsible with our information and with our sources and everything else. And it's something that I carry with pride.

And I just want people to know that when you're dealing with true journalists, people who work in the field and we're trained in it, you really are dealing with people who are trying their best to give you you know, the truth. And in fact, so that's, that's just my little stick up for journalism thing, but I am, I was the editor of a group of 23 newspapers when I was about 21 years old. I went on to be a full time crime reporter and bureau chief for a daily newspaper for about 11 years. And then I went to work for the New York Times doing adventure travel, which I did for a good long time. And now I am the travel editor of a newspaper in Boston called the Boston Herald and I also do their ski section and it can be contributing editor and writer at ski magazine. But my new exciting thing is for about a year and a half now, I've been writing as a medical journalist for helpline media. So that's where my background is with a lot of other things in between. Yeah, tell us yours

Stacey Simms  10:14

Sure. And I will also stand up for my profession, by adding by adding that journalism is the only profession singled out in our country's constitution. It is an incredibly important part of our government, and country function. And my personal feeling, and you know, you can disagree with me on this, as you listen to more as well, is that most people who are angry at journalism are angry at talking heads and opinion pieces. And the line has just blurred because of 24, seven cable, and lots of other things and talk radio. It's just become a real mess, in terms of the definition of journalism is, is my feeling on that.

But I yeah, and I'm with you. I mean, when I was in college, we took communications law, we took lots and lots of classes on this. And I had some incredible news directors during my career. So I was a radio reporter. In college, I say I was the world's worst radio reporter. And I really was terrible, because they hired me, but didn't tell me how to do anything. So I drove around Central New York looking for stories. I mean, I was terrible. But I made it and I learned a lot. Then I spent 10 years in TV news and local TV news in upstate New York, and in Charlotte, North Carolina, where I am now. And then I spent 10 years doing news. And this was a really interesting job. I did a morning news show for a conservative talk radio station. So there was a firewall, you know, between the the news department and the talk part of the radio station. But as I said earlier, you know, I don't think a lot of people make those distinctions as they listen. And so it was a very interesting place to be. Let's put it that way. And then of course, for the last five years, I've done the podcast, which I've really tried to instill with those, you know, journalism, ethics and disclosures and all that stuff.

So that's our background, which is why I thought this is a perfect topic for ask the D moms. I don't know where this discussion is going to go. I'm excited to hear what you have to say Moira, I'm so excited to see or, you know, find out what listeners think. So let's jump in.

This was a question. I'm not going to read this person's name because I pulled it out of a Facebook group. But I think it's a fabulous question. This person says, My 12 year old was diagnosed last week, we are absolutely new to the world of T1D and my brain is seriously about to explode. I have no idea who to trust for information. Who do you trust? Any tips on how to navigate the flood of information out there? I've only been at this a few days. It seems like everything's a contradiction. Go low carb, don't go low carb. read this book. No, don't read this article. Read this instead. And she goes on and on about all of the contradictions in the community and I'll get to more of them. You know, CGM changed our lives CGM is too much hassle. Technology is great technology is terrible, he can do anything he is about to die. I mean, she really lays it out. All the things that you and I have kind of talked about for years. So I want to tackle this in a couple of ways. I want to tackle this in terms of reporting in the diabetes community and studies. And I want to tackle what people just say, right community advice. So let's start with the information. And I I'm glad you brought up Healthline, because you may know more about when this started. But Healthline has this really fantastic thing that where they put on the article, not just the author of the article, the journalists behind it, but they see fact

Unknown Speaker  13:38

checked by?

Stacey Simms  13:40

Yeah, so somebody goes through all your stories,

Moira McCarthy  13:43

right, and and what people probably don't know is that that has been the case, every single place, I've worked for the 40 years that I've been a journalist and help one, I'm guessing, I probably should ask my boss for this, I'm guessing made the decision to highlight the fact checkers, for the readers peace of mind so that you can see there's a fact checker there. And then second, because they're becoming more and more important in this weird time and how journalism is evolving into, as you said, a little bit of a confusing thing. So I think that's why they put it right out there.

But I have always worked for quality publications, and every single thing I've ever written has always been edited, in fact checked. And I think that that's an important distinction for people to understand. And I can talk a little bit about how you can figure that out. Because one of the things you know, as a journalist and you'll agree with me, Stacey is everything ever written needs at least a second pair of eyes on it before it's published at least a second pair of eyes No matter how good you are as a journalist, you get fact checked and looked over by someone before it runs if you're Woodward and Bernstein you do and if you're me, you do now I think the blur comes a little bit in that blogs and ziens and other online things that may just be done by one person look the same on the internet, as the New York Times does or as the Hoboken journal does, whatever it is that you read, do you know what I'm saying? Yeah, yeah, it's a great point. It's a grand. So I'm not saying that people who write those kind of things aren't smart and and don't know, but that's actually not a full journalism, experience, for lack of a better word. And what I usually say to people is, when you're reading things, first of all, figure out what the sources you know, if if the name of the quote unquote publication, when you look at it online is like, I am smarter than you.com. It's probably not a really great source. But if you start to read something, and you feel like you'd like their boys, then that's a reason to read it. But understand that you're not dealing with full on journalism set up in the classic way back. Does that make sense?

Stacey Simms  16:19

Right back to my discussion with Moira. But first Diabetes Connections is brought to you by Gvoke Hypo Pen.  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 Hypo Pen 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 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 comm slash risk.

Now back to Moira and me interesting timing. Following this endorsement, we move to talking about disclosures and commercials. But she left off asking me for last point about looking for clues in something as simple as a blog name made sense.

I think it does. I think it's great advice. It's also helpful when you're reading a blog or you're reading a personal new non-medical testimonial, something like that, that you also ask yourself the question. Are there disclosures on this website? In other words, if this is a blogger or a podcaster, you who are they sponsored by? And are they disclosing those sponsors? In other words, who is paying them? Just because this is a good example of this show, we take sponsorship and I talk about this all the time, whenever we have somebody on the show who is one of the sponsors, I disclose it again, and I talk about how Look, they're not paying for the content, they don't tell me what to ask, they're paying for the commercial, that sort of thing. But you know, as you listen to that that is happening. And so if you're on a blog, or you're on a podcast, and they're not disclosing who the sponsors are, that's a red flag, it's also really important in our community to kind of know what the person is using device wise. Because while that doesn't mean doesn't make them biased, it doesn't make them their information incorrect or wrong. It does influence how we live with type one, we all have our little fandoms. And I think it's really important to acknowledge that. So if you're hearing or reading some information, it's okay to question

Moira McCarthy  18:35

it is but to go backwards as a journalist, when I write for someone like helpline, or if I was, you know, when I write for a newspaper, whatever, that should matter, not one bit. In other words in in these things like podcasts and blogs and, and other things that are sort of, you know, it's a new world in a different way than then that does. But my job as a journalist, when I write for classic journalistic publications, is to not bring what my opinions are to the final product.

Stacey Simms  19:09

Absolutely. And that's, you know, we've already talked about blurring the lines here, when I'm speaking about disclosures, all that, look, if you're a journalist writing for health line writing for a magazine writing for newspaper, you shouldn't disclose your sponsors, because you shouldn't have any,

Moira McCarthy

I don't have any

Stacey Simms

right. You know, to be clear, we were kind of talking about two different types of writing there. And that does make it confusing. Let's talk about reading studies. Because I think most people after they're in the diabetes community for a month, know to look past the headlines.

Moira McCarthy  19:42

Yeah. And even some of the studies I remember years ago, I don't remember what study there was that I don't even know if there was email, maybe email was new back then, and I emailed it to the Lauren's endocrinologist, and he called me up and he said, just so you know. person can create a study to prove and be successful that women who drive in red convertibles, when they're teenagers, at least once are more apt to have a child with diabetes. In other words, you can take anything and link it to something else and sort of prove it. So so what I always say to people and, and we maybe will talk to you about how you react when friends send you all those headlines that are not really true, because you sound like such an over when actually you are. So first of all, forget the headlines, read, read what it is. And then if you're reading a story about a study, you can almost always get your hands quite easily in the internet on the actual study, and read the actual study so that that's what I usually suggest. And anything that says, you know, cure diabetes in mice, my old story is when Lauren was very little, the movie, Stuart Little came out, and they gave all the money to JDRF the first night. So we went to a movie theater, opening to see it. And on the way home, my little daughter said, Oh, Mommy, I understand why Stuart Little wants to help diabetes, because he can be cured. He's a mouse.

Unknown Speaker  21:13

So So what I'm saying is,

Moira McCarthy  21:17

is read carefully and dig into it. And and my advice when friends send you articles about studies is just thank them. Like, you know, just say thank you so much. It's so interesting. And if they push further and say, why aren't you going to get back here? Then you can explain more. But I guess so I guess my advice on reading studies is actually read the studies, or at least the summary of the study,

Stacey Simms  21:40

get exactly the first thing I do. It's funny about Stewart little, the first thing I do, and I just saw study yesterday, but some like electromagnetic field, these researchers were so funny that the headline was like, we built a remote control to cure diabetes. And they were I'm laughing that they were funny. They were very young, which is what made me smile. So I think there was a college study or something. But I clicked on it to read more. And the first thing I did was scroll down. And of course it was in mice. And you know, nothing was proven. It was all correlation, not causation. And it was very interesting. But it wasn't, it didn't prove anything. And they may move into human trials someday.

So what I also talk about a lot is, and I've learned this over the years, which I find kind of disappointing, but also it's good to live in the real world, is to realize that, especially with a lot of companies, the marketing department can get ahead of itself can get ahead of the rest of the company. Yes. So sometimes they'll say something and make a big splash. And you know, a great example of this, and I'm so sad is Animas Corporation, that I loved Animas Corporation, part Johnson and Johnson, they made this wonderful insulin pump that my son used for 10 years. For years, they were talking about their hybrid closed loop, they seem to be ahead of everybody. And they were getting these incredible studies out of Europe. And it really looked terrific. And then of course, Johnson and Johnson closed up the whole company. And it never as far as I know, it never even got to trials in this country. So that was a lesson for me, unfortunately, in I mean, get excited, get optimistic, you know, let go, obviously great things are happening. But be careful about letting marketing get ahead of what's actually happening. And so when we're reading articles, we're reading studies, like you said, actually read the study is probably a really good way to go. And a good thing to point out too is I don't know about your experience. I have never written my own headline for anything. You never get to write your own headline,

Moira McCarthy  23:32

right? Oh, no. And and Healthline actually has a team that writes the headlines. Yeah. Like, that's their job. And I did you know, when I was an editor of a newspaper, I was, you know, oversaw the headline writers and everything, but I know, I don't write my own headline. Um, you know, I was just thinking to that this is kind of a good conversation to have right now. Because one of the reasons, you know, beyond being a medical journalist and covering it, but one of the reasons that I've been able to follow the vaccination news, with, with confidence, and what I understand and what I know I shouldn't care about is my experience all these years and reading studies and reacting to things that I hear about diabetes. So it's a good time for people to know how to dig deeper when they see a headline.

Stacey Simms  24:16

And you mean the COVID vaccine.

Moira McCarthy

I do. Yeah.

Stacey Simms

This is a time when we need good health news.

Moira McCarthy  24:24

No, no, maybe that'll be one of the silver linings, people should know how to at least basically understand medical research of all different kinds. So understanding how to read about it. That may be a good thing that comes out of this. That's a really good point. Then, of course, there's the whole world of information that newly diagnosed families like this person whose question you read are thrown into now. And I want to tell you that my first advice when people Reach out to me, you know, connect me to a friend whose child was diagnosed her car is do not go on the internet for a while other than basics. And that's because it must come at you like this woman described like you're almost being assaulted with all these different things that completely conflict with each other. And I think that in the beginning, one of the reasons that I was able to build somewhat of a confident foundation for my family after my daughter was diagnosed 23 years ago, is that there was no internet. And so I read books, you know, Merck medical journal, and the Pink Panther book and things like that. But most of my information came from the most reliable source you can have. And that's a qualified medical team. And so before we talk a little more about, you know, how you figure out what's right, and what's wrong with people, I just want to say that it has to be incredibly difficult. And I actually strongly believe that that environment is one of the reasons that studies are now showing that parents are more concerned and more afraid than they were 20 years ago, I think it's the the overflow of information coming from every direction.

Stacey Simms  26:17

I agree. Oh, absolutely. It's, it's like, it's always like drinking from a firehose, when you learn about type one. But it has become, you know, like trying to drink the ocean. Because it's not just information from the medical community, it's, I'm going to put this in quotes. It's, quote, information, and judgmental advice from the community. What I tell people is, same thing as you try to stay off the internet, try to join a local group. Interestingly, this question was posted in one of the largest diabetes Facebook groups that I am in, and it is full of people at different stages and ages. And it's type one, kids and type Well, it's type one parents, you know, and adults with type one, it's just it's an enormous group. But it's funny when you mentioned staying off the internet for a little while, you know, I have an I promise, this is not a book promo. But with the world's worst diabetes Mom, I have a program called the book to clinic program, where I'm able to give pediatric endocrinologist to read the book and are okay with the worst, you know, the world's worst moniker, they can give it to families for free. And we've decided that it's probably not a great idea to give this to newly diagnosed families and to wait until at least three if not six months, in, not because the information is too complicated to comprehend. But because they're getting enough, they need to focus on insulin dosing, and checking blood sugar and getting routines in place. And then they can branch out more information and these other things that just come at them. I mean, we have a program here in Charlotte, where they put technology on these kids in the hospital. And I know everybody loves that. But then you come into my local Facebook group, and everybody doesn't love it, they are overwhelmed. And so

Moira McCarthy  28:02

another time, exactly. I was going to interrupt you when you're talking about your book and say, I want to suggest that you not give them to the give them out till three or six months after diagnosis, and you already are. So here's what I think. I think that when you're delving into that kind of anecdotal, sharing, everyone is right, and everyone is wrong. Because some things speak to some people and some things speak to others. And so my advice is, if you read something online, that makes you feel uncomfortable, or makes you feel judged, or makes you feel like you're doing it wrong, share exactly what you read with your medical team. Like say, I just want to run this by you when and and let's say it says I don't know I'm gonna make something up so that no one's offended by it. Let's say it says, You absolutely have to keep a pink bow on top of a helmet every day or your blood sugar is never going to be stable. So then you call your endo your CDE. Or you send them a note you say, Hey, I just sometime the spine because we don't have a pink bow on a helmet on our son. So can you let me know if this is true? And then they will say, either? Yes. I can't believe we haven't shared this with you. You need to do it or Now's not the time or pay no attention to this. Find the medical team you trust and let that be your true north

Stacey Simms  29:31

Yeah, right. Oh, without a doubt and I love love love that every everyone is right and everyone is wrong. Yeah, that I may have to put that on a bumper sticker to be able to offer stickers. Yes, it

Moira McCarthy  29:43

applies to much more than diabetes right now, doesn't it? But but so so what the way that I was already far into diabetes by the time Facebook and the internet existed, but I have a group of friends that I've made through that. And what I found was, you just sort of noticed these people That kind of fit in harmony with you, you know, and then you're like, Oh, I think I'll message them and see if we should be Facebook's Facebook friends. And then you figure out, you know, most of my, I have a diverse group of friends, but most of my very close diabetes mom, friends and adults with diabetes, subscribe to the same philosophy that I subscribed. And so I'm nada. Had my daughter on low carb through her childhood person. I don't have any problem with those people, they can do their own thing, but it wouldn't be someone who was really into that I'd probably be like, yeah, that might not be a good fit, just because, you know, yeah. And of course, you might like someone and they're funny and nice. You just disagree with their diabetes care, that's fine, too. But I guess what I'm saying is, don't take it all. So seriously, it is just boats shoot the breeze. It's anecdotal. You don't know there's this old New Yorker cartoon I love we should try to find it or in we should put it on my page. It's two dogs, and one of the dogs is on Facebook. And he's saying that the other dog The great thing about Facebook is no one knows your dog. And and what that means is you don't you don't know what's real, and what the whole story is behind that. For me, it was always everyone was always doing perfectly with their teenager except me. And he come to find out when you dig down that that's not really true. Most people struggle a little bit most years or don't do it some other time. And so, if I had, if I had Facebook back then which they didn't, and my daughter was struggling and I had gone on and all these people were just saying, you know, take her to take her to a dialysis center and show it to her, she'll, she'll change I might have bought into some of that, when it might not be what's best for my child. So again, my best advice with for anecdotal advice is they're all right, they're all wrong. Talk to your endocrinology team about what's right and wrong for your child or for your family.

Stacey Simms  32:06

I absolutely agree with that. And I always say, you know, we all parent in our own way. So we're going to parent with diabetes in our own way. There's only a couple rules, you know, put insulin in and know where your blood sugar is. Everything else is fair game. So if you you know, if you want to do a sleep over, and your friend on Facebook says that's the worst thing you could possibly do. It's okay to disagree. I think what happens sometimes, though, is people will post with such conviction, and such surety in their method that it comes across, like an information source. And I this might get uncomfortable, you're much nicer than I am with the pink bow on the helmet. I don't mind getting a little specific.

I'll talk I'll put some examples out, you know, when I when I do Diabetes Connections here on the podcast, if you're a longtime listener, you know, we have talked to people who manage diabetes in so many different ways, super low carb, you know, keto super athletes, super laid back. You know, we've had a lot of people on the show, and I try, you know, when I'm editorializing or sharing my experience, I really try to give a platform I mean, I'm not gonna put anybody out who's not safe. But or you know, who's i think is not reputable. But we do give a platform here for many different types of management.

And I'll give the example because I know they can take it the Mastering Diabetes guys, these are the guys, Moira I don’t know if you’re familiar with them, they have a book, they’re very popular. You see them they're holding like giant baskets of fruit. I'm not going to explain it well. But you can go back and listen to the episode or read their book, their whole thing is, if you eat tons of calories that come from fruit, tons of carbs that come from fruit, your insulin sensitivity will go down and you'll be able to eat enormous amount of food as long as you eat this type of food. And you can hear in the interview, I am having none of this, I can't imagine a more miserable way of living. It would never work for me. There are people who love it, who are happy with it and are thriving on it. So that's a bit of information in a way of living that I would suggest you as you listen, dismiss or embrace like Moira said, everybody's right. Everybody's wrong. That may work for some people. It doesn't mean it is factually the thing to do.

And I think that's what makes me crazy about this well meaning community, you may be great. At 85 you may be great setting your Dexcom alarm for your kid at 120 I can't think of a better way to ruin my relationship with my son. It would never work for me. I have friends who text their kids six times a day and they say they have a great relationship with their kid. Mazel Tov wonderful, never would work for us in a million years. That's the kind of stuff I'm talking about is contradiction. Well, because if it works for them, why wouldn't it work for us? Because it doesn't.

Moira McCarthy  34:54

So So advice that pops into my head is if someone says something to you on line like, you're harming your child, if you're not doing it this way, or I love my child enough to make this effort, maybe you don't, or ever, your child's going to have complications, I would shut that person down immediately. Because that's not a rational way to look at the diabetes sphere in general, because we are all so unique. And one of the things we know about diabetes is it's very individualized. It's one of the big challenges for it. So if someone if someone is writing something, or sharing something online with you, and they tell you that if you don't do it their way, you know, there's trouble, I would dismiss them immediately as as not a good source. Other than like, you know, I don't know, don't club baby seals, and don't, don't tie your children to the bumper and drive them full speed. I'm talking about semi reasonable things.

Of course, it makes me sad when I see certain groups who believe certain things, being aggressive about it, because I'm sure that it comes from the right place, and they feel like they found an answer. But they, they've only found an answer in this moment for themselves. They haven't found an answer for everyone in the world. They haven't even found the answer themselves forever. They don't know what's coming down the road. I'll share a funny story too, when you say about the other parent saying their kids are fine with it. When my daughter was a teenager, I said to her CDE one day, can you please tell me why every other 14 year old on earth with diabetes, A1C is like 6.9. And my daughter's isn't, and I'm struggling and no one else's. And the CDE said, because the rest of them are all lying. I know because I treat them. I can't tell you details, but trust me that they're not sharing. And you know what? That's not all wrong. It's not It's not that bad to put a rosy picture out for the world. But don't push it into advice and and be aware of that, too. Like, if someone tells you everything's perfect all the time, I would just be like, yeah, good for you, and then maybe cross them off your list. You know, because I don't know of a person who raised her child with diabetes, or who's had diabetes who does not have bumps in the road?

Stacey Simms  37:22

I can’t  believe you would say that to my face.

Moira McCarthy  37:27

You the world's best diabetes mom, everybody else has problems with that just because you love anymore. If my daughter, she wouldn't have like spikes, post meals or have done phenomenon, right? You're

Stacey Simms  37:41

just gonna try harder. I would also add, and I do this, and I really have to stop because I'm on my phone way too much. You know, this this year, especially has just been difficult for people who enjoy information. But But I post all the time in diabetes groups, when I see something and in my group as well. Interesting, what's the source? You know? Or what? Where did you read that? Where did you find that out? And if they don't have one, then you know what, you can ignore it. You don't have to internalize it, you don't have to act on it. If someone posts something that just seems weird or off base or brand new, unless there's a source of study a medical professional behind it. Um, you know, I wouldn't recommend you fight. I mean, let's not get crazy. It's okay to walk away. It's not a real conversation. You know, you can you can say No, thank you. But I always ask for sources. And I've learned a lot from people posting the sources. I didn't realize that or people posting the source and saying, No, but you know, that that blogger was discredited A long time ago. So just, it's okay to ask for that. I think it's also a really good way to get more information.

Moira McCarthy  38:53

Yeah. It's also okay, that, lets say not just anecdotal, chatting back and forth. But if you read a blog, or you listen to a podcast that's giving medical advice, I think that it's perfectly fine to reach out to them and ask them what their medical background is. And if they don't have a medical background, then you really shouldn't take medical advice from I know, you know, hey, I want to just wrap back to the beginning because I just had an email come in, sorry, but while we're chatting, I'm I'm on a deadline. And it's from my boss said helpline, and it says, Hey, more your important formative story on Blank is on the site. Now, on advice of your fact checker, I took out the paragraph on the notion that blank blank while you did show us a study or two there are conflicting research on those points. It looks great without it so don't worry about it. So I think that shows that when you when that people should trust real news sources, that's what happens. You know, I researched I found studies but they researched a little further and found a Couple conflicting ones. Since we want to go with the story, we'll take out the studies that I did that I've got a good illustration, right?

Stacey Simms  40:07

I do. That's great. Thank you for sharing that. That's fantastic. Just came in. Oh, hot off the presses.

Unknown Speaker  40:15

Um, so Stacey, where are you traveling to to speak, he's coming

Unknown Speaker  40:21

out of the family room, I'm in the living room. Now, my

Stacey Simms  40:25

family will say, Oh, my gosh, I never took all the stuff off my calendar. So I was supposed to be all these places, you know, this month in the next couple of weeks that I'm like, gosh, I gotta take this off my calendar because it's

Unknown Speaker  40:38

1. Oh,

Unknown Speaker  40:40

so I'm like, stop it. I'm not going there. But I did

Stacey Simms  40:43

go, Benny. And I went to the endocrinologist this morning. So actually put on real pants.

Benny  40:50

And they said and makeup.

Stacey Simms  40:52

Yeah, it was very funny. It was very funny makeup. I know. I know. I didn't mean but who puts lipstick on anywhere where he's wearing masks? No, it was great. It was great. And I did, I did get to ask our endo. I always have a list of questions even after all this time. And it's so great to have him as a resource. You know, to answer the questions. I mean, I know we're harping on it this whole time. But really, as you listen, and I think, you know, podcast listeners, you're We know you're smart. You're looking for information. share this with your friends, post this in Facebook groups where people are concerned about the information they're getting teach people, let's help each other be smarter. And fact check stuff about diabetes, because then there's so many we already we deal with it for people outside the community, we want to talk about okra and cinnamon. Right? We don't need to deal with nonsense within the community. We just want to help each other.

Moira McCarthy  41:41

Right. And and like I said in the beginning, I think this is a good time for us to talk about this because we all need going forward to know how to understand what is news, what is opinion, if you read a headline, how to dig down in it that, like you said so eloquently at the beginning. I mean, journalism is a pillar of American democracy. And I know it sounds all Whoa. But it really is true and, and weak. We journalists care about what we do. And we want people to be able to trust what they read. But unfortunately, the way the world is now that means the reader has to do a little more work.

Stacey Simms  42:21

Moira, thank you so much. As always enjoy your trip to the living room. Be careful. You know,

Moira McCarthy  42:25

I will I'll send you a postcard

Stacey Simms  42:27

navigate the traffic. And we'll talk again soon.

Unknown Speaker  42:31

All right, talk to you soon.

Announcer  42:38

You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms  42:44

How would you have answered that question from that Facebook group? What are your sources? What are your go to sources of information? I'm going to put that question in the Facebook group this week, because maybe we'll learn some new great ones. Maybe we'll learn about some pitfalls. I'm curious where you get your reliable information. And if there are people in the community as well, that we should be looking at that we haven't found so far. And if you have a question for ask the D mom's just a regular diabetes question, feel free to shoot me an email Stacey at Diabetes connections.com Moira, and I'd love to catch up with each other these quote unquote interviews usually go for about half an hour longer than what you hear because we spend the time catching up as well. It's amazing, isn't it? How many of us makes such good friends because of stupid diabetes? It's the only good thing that comes out of this condition.

Hey, tell me something good is coming up in just a moment. We're going to talk about the amazing race. One of my favorite shows the Diabetes Connections is brought to you by Dexcom. And when Benny was very little and in the bathtub or at the pool, I always noticed his fingertips. I mean, you know what I mean? Right? They were poked so much. They were just full of little pinprick holes that you could really see when they got wet. He's 15. I don't see his hands much anymore. But at the end, oh, earlier this month, they always check his fingertips and it's amazing. We've been using Dexcom for almost seven years, and Benny's fingers look completely normal that I cannot believe it is such a visualization. I wish I'd taken a picture seven years ago. But you know the latest generation, the Dexcom G6 eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about doing 10 finger sticks a day in the past makes me so glad that Dexcom has helped us come so far. It's an incredible tool. If your glucose alerts and readings from the G6 do not match symptoms or expectations. Use a glucose meter to make diabetes treatment decisions. Learn more go to Diabetes connections.com and click on the Dexcom logo.

In Tell me something good this week. If you are not already a fan of The Amazing Race, I think you're going to be quite soon. Now a couple of years ago I think it was 10 years ago a couple like it was yesterday. Nat Strand Dr. Nat strand won The Amazing Race. We've had her on the show before I've talked about this because the media Race is one of my favorite shows. I started watching it when I was pregnant with my daughter, Lea, who is going to be 19. A couple of weeks. I've been watching the show for a long time. I actually haven't seen it in a couple of years. But I just last week said, I gotta start watching again. Maybe I'll start from the beginning. I don't know if I want to do that, or where am I going to jump in? But I got my answer, because this season of The Amazing Race features somebody with diabetes. I was watching the promo. And you can see this little clip of Leo Brown, he's got a Dexcom on his stomach. He is part of the team with his girlfriend, Alana Folsom. Everybody in The Amazing Race gets little nicknames because there's teams have to sort of keep them straight. Because you don't know anybody's names. They always boil them down to the essence. So you know, baseball bros, brother and sister longtime dating, which is what Alana and Leo are. So here's a little clip of them talking about getting ready for the race.

Leo  46:02

We've investigated past participants on Instagram.

Alana  46:05

Leo has a manual transmission car which came in huge I think the main thing we've been doing is CrossFit.

Leo

Oh, we also did a ropes course basically for the last six months, it's been our primary activity trying to gain new skills.

Alana

Oh, we also got to buy prescription swim goggles or team

Leo

prescriptions from goggles. Realty.

Stacey Simms  46:26

I have reached out to Leo, I am really hoping that he will come on the show and talk about the experience. Because not only do I want to know about being a person with diabetes on an event like this, which Nat has shared before how she did it, but that was more than 10 years ago, and the technology has changed. So be fun to find out what what helped Leo and maybe what did not. I was also laughing because I saw the preview of the show. And DeAngelo Williams is on this season. Now I know maybe that doesn't mean anything to you, but I'm in the Charlotte North Carolina area. He's a former Carolina Panthers. But he's one of these community guys. Like even if you don't know football, you know, D'Angelo, it's gonna be a really fun season to watch. I haven't seen the first episode yet it aired out last week, as you are listening to this show. I don't know maybe they got voted off. Maybe D'Angelo got voted off as well. But I really hope I can get Leo on the show to talk about his experiences on The Amazing Race.

We are coming up on diabetes Awareness Month. And this is a year like no other Can I sound like every commercial you've ever seen. But I think this diabetes Awareness Month is going to be very different as well. We've got to get through the election before anybody's gonna pay attention to anything else. And I always say diabetes Awareness Month is for people outside of the community, not necessarily in I mean, you're kind of aware of diabetes already. So I'm going to be doing my usual news push to see if I can get some news out there to people who may need it and don't really understand about diabetes. But I'm also going to be doing a little something for us because boy, we need a little something. I'm going to be running a contest through the month of November. I've got some fun prizes. I've got some great companies, we just want to make you smile a little bit. So that will be going on in the Facebook group Diabetes Connections, the group and on my Instagram account over at Instagram. I'm just Stacey Simms, so follow me there or jump into the group. If you're not already there. We're going to have a good time. We're going to give away some stuff. And we're going to keep it kind of low key because I don't know that I have the wherewithal to keep it any other key right now.

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

Benny  48:38

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

There's a new way to connect people with diabetes who take insulin with assistance programs. It's a new website from Beyond Type 1 and, of course, it's not without controversy. GetInsulin.org launched earlier this month, so we asked Thom Scher, the CEO of Beyond Type 1 to come on the podcast.

Thom explains what the website is all about, why they started it and how it works. He also answers our questions about why Beyond Type 1 accepts money from insulin makers, what that means for this program and why they teamed up with groups like the NAACP to get the word out.

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

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Episode Transcription

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke Hypo Pen, 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

Welcome to a bonus episode of Diabetes Connections, I want to take some time and put this episode out quickly to talk about the new program from Beyond Type 1, get insulin.org if you are new to the show, I'm really glad you found us usually put the episodes out on a weekly basis. But sometimes we throw bonus episodes in here and there.

My son was diagnosed with Type One Diabetes right before he turned to almost 14 years ago. My husband lives with type two diabetes, I don't have diabetes, but I have a background in broadcasting and local radio and television news. And that is how you get the podcast. And that's why this show has a little bit more of a newsy feel and newsy type feel than some of the other really wonderful diabetes podcasts that are out there.

Now earlier this month Beyond Type 1 launched a new program it is hosted at the website get insulin.org. They say this connects people with diabetes who take insulin to assistance programs and low cost solutions that match their unique situation. I was interested to learn more. And so I asked the CEO of Beyond Type 1 Thom Scher to come on. Now get insulin.org is kind of a clearing house. I will link up to it. Of course in the show notes.

The information has been out there for a while these are coupons and assistance programs from the major insulin manufacturers, the only insulin manufacturers geared for people in the United States. As you well know, it's a complex situation, there really is no easy way to find out exactly what you qualify for, you know where to start. And that's what this aims to do a lot of strong feelings online. And in real life when this program was announced, many people upset that Beyond Type 1 does take money from the insulin makers, and that they have taken money and are putting the logos of the insulin makers on this website as well. Of course, I talked to Thom all about that.

If you are looking for this information, and you want the coupons you'd like to go through and see I can tell you before this interview begins, it really is a comprehensive website to help you find what you are eligible for. So go ahead if you're looking go to get insulin org and check it out yourself. I also need to mention the sound is just a little bit off on this interview on Thom's and it sounds a little bit metallic. And long story short, that is my fault. My technical error, but it shouldn't keep you from understanding anything. It just might be a little bit distracting at first, and I apologize for that. Here is my interview with the CEO of Beyond Type 1. Thom Scher. Thom, thank you so much for joining me. I appreciate you making time to talk about this.

Thom Scher  2:54

I am thrilled to be on Stacey, anytime I get to be on your podcast. It's a good day. Oh, thank you.

Stacey Simms  3:00

When we last talked, and I believe that was around the time of the partnership with jdrf. When that was announced, you're already talking then about trying to do something about insulin access. So tell me a little bit about what get insulin org is all about?

Thom Scher  3:16

Yeah, get insulin.org was probably born right around that time. Actually, it was it was over a year ago that we started talking about it. And really what we set out to do was build a one stop tool that could get people to the right resources for them available today. And that's not only urgent resources, in terms of emergency need less than seven day kind of need. But it really allowed people to get cusThom action plans that were based on their individual circumstances. So things like income, prescription location, insurance type. And rather than get them a list of what is the frankly messy, messy web of a lot of different options, they get the options that are actually specific to their circumstances. And we set out to build that and have it be a relatively easy to use and friendly tool for people that are in that situation, which we know is frankly far too many people.

Stacey Simms  4:11

So how does it work? I mean, I'm it's easy to see you can get on it and click around but I'm curious to hear your words. How do you explain it? What will people find?

Thom Scher  4:18

At its core, what we ask of you is a very small subset of information out of the gate, I believe it asks you for zip code, it asks you for what specific insulin you're on both brand and depending maybe the product itself and or vial, etc. And then asks you what insurance type you're on. And at that point, the system starts to essentially tree out. So if you're on commercial insurance, and for example, on certain products from certain manufacturers, we're good. We'd have all the information we needed that point to tell you, for example, a copay card could be eligible for you based on what you've told us. If you say you're on Medicare, we're probably going to need additional income elements we may need to know if you're on no interest. Whether you were laid off as a result of COVID, those kind of questions come up in the flow as we work to essentially filter out the things that aren't relevant to you. So what you get at the end is just the specific programs that are relevant to you, I want to be clear, we're not acting as an actual Assistance Program, what we're doing is essentially eliminating the guesswork that's gone in for far too many people in this at that point, in time of not knowing which programs they should be going to in the first place. This project was born out of stories about just that, where we hear, frankly, these harrowing stories of people taking a day off of work, going into a clinic being told there might be a program available to them filling out an application having extension only to then be rejected, not knowing that it's because they'd applied to the wrong manufacturer or the wrong program within a manufacturer not knowing that they were actually being Medicaid eligible, those kinds of problems, and they kept happening. And for me, that's an awareness and routing issue. And I want to sort of double down this is far from systemic reform here that we're talking about. But what it's doing is offering a tool to those patients, and frankly, the providers that are helping them ensure that they're getting to the right place out of the gate.

Stacey Simms  6:20

So it's like a clearing house. You know, we've seen those piecemeal posts here and there Lilly has this, you know, novo has this you can apply if you've lost your job. This is a place where you go and put a little bit of information in and narrow it down through all of the assistance programs.

Thom Scher  6:36

Yes, so it includes programs from Lily violin, Novo Nordisk, and Santa Fe, as well as various government assistance options, in particular your state Medicaid programs, as well as Medicare information and chip information depending on state. And all of that is essentially aggregated. It also includes patient assistance programs and commercial programs. So that includes things ranging from copay cards on the commercial side, for example, or cash programs, and also the actual patient assistance programs. And that's important, because it's another area where patients have friction point. Because, as we all know, if you call the lily solution seller, they can't help you with your Novo Nordisk product. At the same time, if you apply to the Lilly cares patient Assistance Program, you may not be getting information about what you couldn't be getting from the commercial side, there are all sorts of bright lines that, frankly, are set up for regulatory reasons. And that's fine. But by injecting a nonprofit in between, we were able to create a one stop clearing house as you put it, and that's a really good way of thinking about it.

Stacey Simms  7:42

What happens to the information that I put in to be on type one,

Thom Scher  7:45

if you vanishes, it vanishes, it vanishes. Stacey, it's a great question. It's plastered all over the site, because we get it a lot. Everything you're inputting is done browser side, nothing ever communicates to our server with the exception being at the end if you decide to email the substance of it to yourself. And at that point, we use it for very strict purposes. And that is to send it to you and then purge it off of our servers as well. So we're only looking at the data in aggregate traffic location of that traffic, and then generation of action plans. So the number of people that are actually getting to an action plan itself. But outside of that we don't retain any of that information. It's actually a real point of concern, in particular, for often the people who need these programs most it's also a fear that we're just passing marketing information, for example, along to a manufacturer and we're very much not,

Stacey Simms  8:37

I'm curious about how the conversations went, because I imagine there were some people in the room who were like, We need this, we got to capture this information, because that's what everybody does on the web, right? I mean, you know, when I put out my book, I was shocked when my website, people were like, Oh, you got to capture every person who buys it does this and you know, people opt in, but at the same time, it's stunning how much information you can capture, if you want to, can you give us a peek into those conversations?

Thom Scher  9:01

Yeah, I think that there's always a give and take in those conversations. And for me, it stems from the goal of what we were trying to accomplish seamless, rapid information to actual people in need. And in that case, I don't need to capture that information. And in fact, I don't want to, they can slow the process down. And frankly, it adds a layer of this sort of thing is some kind of weird marketing output that was never really meant to be the entire premise at the get go was, look, there are people who don't know what options are available to them. And this is for them, at the end of the line are real people do not know which programs are available to them. And I want to add, it's unfortunate that that's the reality here. It shouldn't be on individual people to have the level of health literacy required to navigate the system. But that's the system we're in. And if we can reduce any of that burden, then that was the goal at the outset. And so I think the really honest answer to your question is I had no tolerance for those conversations. In the early days, when we started building this thing

Stacey Simms  10:05

I have to ask you about the elephant in the room, which is, and we've already seen criticism online and elsewhere, that there is money changing hands here, that Beyond Type 1 is taking money from the insulin manufacturers to put this site up to drive people to the insulin manufacturers, to be very clear, what is the relationship did the insulin makers give money to have their their logos and their websites as part of this, and separately, to acknowledge that you've been on type one has taken money from these manufacturers in the past.

Thom Scher  10:35

So first off, yes, we've taken money from the insulin manufacturers, it's disclosed on our funding model page. And we're clear about that. And what I maintain high degrees of transparency on it right on the top of the website, on the website, if you get there, it's on the homepage, it says it was funded by the four manufacturers, you know, this kind of a project is complex. And frankly, having that many manufacturers on a mass catalog with the partners of sorts that we do is a hard set of cats to herd anyway. But in this set of instances, what we needed was funding in order to be able to build the second or maintain the sun in order to get awareness out about the site. And the tool itself is pretty powerful on the back end. And I'd love to get into that a little bit more. But in terms of what it can do moving forward, because there's a lot more that I think we're going to be able to do with it. The other thing, though, is that we frankly, needed a working relationship with the manufacturers, in order to understand the nature of some of these programs really get a look under the hood at all of the edge cases, all of the one off instances in one off states where there have been for example, copay caps passed or various laws have changed the eligibility of programs understand the dates when those programs reset annually understand changes in eligibility to them and build a working relationship that will allow us to also maintain that accuracy on the site itself, so that we're directing people to the right places, you know, this information, one of the critiques has been it was publicly available. And there were a number of organizations that had big lists, we were one of them Beyond Type 1.org. Slash get dash insulin for the last couple of years has aggregated this kind of information. But what it hasn't done is have the degree of eligibility copywriting that you've described as Clearinghouse, rightfully so that this tool does, we're really able to get in there and say, Hey, based on what you've told us, we believe you're eligible for this program, you're gonna have to go to the program to confirm that. But that is so much more effective, having been able to actually work with the manufacturers themselves, and have that working relationship to not only ensure accuracy at launch, the accuracy and awareness of the tool moving forward.

Stacey Simms  12:44

I think there are some people in the community though, who would say we shouldn't be working with the insulin manufacturers, we should only be fighting with the insulin manufacturers, because the prices are so outrageous. And the situation is so dire. Obviously you disagree with that. Can you address that? Yeah, I think it's right,

Thom Scher  13:03

for patient advocates to question the relationships held by patient advocates, you're so friendly advocates anywhere, I don't think that's a bad thing at all. And I respect whose view is that you shouldn't be working with insulin manufacturers in the diabetes space. I do disagree. I think that it's important for us to have a working relationship, not only to be able to fund critical projects that can have a meaningful difference in people's lives. But in addition to that, to have a working relationship and a seat at the table to help drive change for work. You know, I think that some of this critique comes down to if we're working with them when we critique that, you know, I mean, at launch of this, we also published an open letter of sorts from me where I'm very direct that I believe it's unacceptable to see less prices having rose in the way they have, I'm very direct, but I think it's unacceptable to see rationing where it is, it's unacceptable to have the rebate system how it is. But none of that, for me, Trump's, what is the importance of getting this out to the people who need it and having the support to be able to do that. And I'll add on this, Stacey, you don't watch something like this in this day and age with insulin manufacturers about insulin and not know that that critique is coming. We of course knew that critique was coming. We launched this in spite of that knowledge, because we believe that downstream are actual people who need the tool. And that came out over and over again, over the course of building it has come out over and over again, Since launching it in no way means we're giving up on the upstream fight. And in fact that upstream fight is a much harder, much longer road. And it's a road that we absolutely believe in. We believe it definitely needs to happen. But it's not as simple as asking for list price to simply be lowered. In fact, there's quite a robust set of evidence out to the contrary of that. So I respect that view. But I disagree with that.

Stacey Simms  14:57

I'm curious, we're talking really days after this as long Have you heard from people that it's helped?

Thom Scher  15:02

Yeah, I have a member of my team said to me when we launched, and it's some of the most sage advice that was given about this, that launch day was going to be about hotcakes, we were going to see hotcakes from people that were critical of it, we were going to see hotcakes from people that really thought it was impactful, we were going to see patients stories about these programs working or not working for them, we were going to see industry leaders and sort of key thought leaders having strong opinions about one way or another. And then at the end of the day, none of that really mattered compared to the stories that we hoped would emerge about people actually using it. And we're starting to get some of those stories. And I, I was just reading one of my inbox from a partner at an org who sent us that they had walked somebody through it over the phone. And that they they'd gotten a phone call asking for help, and that they take them to the site and walk them through it, that it worked for them. We also had a conversation with them. We're doing some work with Dr. Dan Peters, on our leadership council. And she just had glowing things to say about its use case in clinic. And we saw a lot of that kind of commentary that this is going to be a really powerful tool for providers to be there. And so yes, I think you know, Far too often in the diabetes space, I think we get lost in some of the the higher level talking points about why and how we're operating and whatnot, when all the way downstream or just people trying to frankly, manage their diabetes, live the best lives that they can and get through the day sometimes. And that's a huge volume of people. And I think this tool more than anything is for them not for the hotcakes by myself or you or Twitter or industry kind of none of that matters to me by comparison to whether or not people are actually using it. And

Stacey Simms  16:42

curious to it also says in partnership with some groups that I'm familiar with. But I haven't seen in conjunction with diabetes issues before Feeding America, the n double A CP, the National Hispanic Medical Association, tell me a little bit about reaching out to those groups and why it was important that they get on board with something like this,

Thom Scher  16:58

it's critical to me, it spoke to what we were trying to do. I remember the Feeding America conversation really clearly the first one that we had with them, and they're phenomenal partners. And we're going to one of the things I'm really excited about with the tool is that we're going to add some food security information in terms of how to find local food banks that's based on some of the information that we're getting that's coming likely in the next week or two. With Feeding America. You know, one of the critiques that I think is so often dead on when we talk about helping those who need the help most is that people say well look, doing Facebook posts about Insulet affordability isn't really helping those that are sitting at a pharmacy counter somewhere not understanding how they're going to pay for insulin, not knowing what options are available to that Feeding America is on the front lines of the equivalent of that when it comes to food security. And they know what so many of those community health scrolls really look like they had tremendous insight for us into how we built this, how to get it out. And it gives us a direct mechanism to drive awareness of the tool in groups that may have outsize to me need these underserved communities. And definitely sick he is the same way NAACP has a robust health arm, and they think about the best way to serve those who need support. And you know, they obviously deal with that through various lenses. But we were honored to have their support and they and NHS and Feeding America, I think it speaks to the idea that this issue is one that, frankly, transcends the diabetes clumber station. This is so often about the people who are impacted by diabetes, who aren't part of those online conversations. They're not part of Camp set events and summits in the life. But they're absolutely impacted by the disease. Yeah,

Stacey Simms  18:43

I worry about that too, to be frank with you. Because you know, my podcast audience, as you listen to this podcast, you know, these are some of the most well informed, most engaged, these are people who may have the time to listen to a podcast who know where to find information. So to hear this, this push to try to get this info to people who might not be on Facebook, listening to podcasts, that just makes a lot of sense to.

Thom Scher  19:05

Yeah, look, I also will add here I could be asked for your listeners isn't that they perhaps need it. Although I encourage them go play around with the tool, see what it gives you let us know if you see anything that we can do to improve. But more than that, it's about sharing it. And I think some of the things that our team has been most touched by have been people who shared it with even the equivalent of, Hey, I may or may not support Beyond Type 1, I may or may not need this tool myself, I certainly don't believe that this tool should have to exist in the first place. But I acknowledge that it needs to. And there might be people who follow me, there might be people in my network who do need this tool. And so I'm getting it out there for them. And that resonates with me so much because it's the only way that you can get necessarily the people who really need it is through conversations like that, partnering with those on the ground that are really doing it and making sure that it's getting into that hands of the people that are actually not only using it, but working with the people who are using it.

Stacey Simms  20:05

I like that idea too of sharing it with the physician sharing it with your endo, or your general practitioner who may not know anything about Beyond Type 1 at this point. And then to have this for other people who may need it as well.

Thom Scher  20:15

Yeah, you know, Stacey, I'll add to on that there's a reason why we housed it at get insulin.org. It's not some brand play for Beyond Type 1. I think that for us, if this was some kind of traffic play of the like, like, sure those critiques are a lot more appropriate if we'd launched something and driven a ton of traffic to the Beyond Type 1 site with a bunch of click through now, now isn't what we did here. We tried to build this thing. So it could be standalone independent with a strong coalition of both diabetes and non diabetes partners. And frankly, a ton of touch points offline, to ensure that this gets out there, which we're doing. I'm doing this podcast, but there's also radio ads happen in certain places and digital marketing happening in certain places. Yeah, we're doing a lot of targeted work over the course of this quarter and into 2021. To make sure that this is getting to the right places, we just sent print versions of awareness materials to a ton of clinics. So this has a lot of tentacles that bring that we haven't talked about a ton. Because it's all part of what is a much bigger strategy around how to ensure that this gets out there to the right people. And the diabetes audience that you have is a core part of that course.

Stacey Simms  21:23

Thom, before I let you go, and you may not be able to answer this, and that is fine. You know, we're talking at kind of the peak of this incredibly historic, bizarre, I don't know what kind of words you want to use to describe it election year. I know, I'm not gonna ask about politics, don't worry. But I am curious, are you optimistic that we're going to see a progress on actual insulin pricing and changes? I feel like the last couple of years, even with the hot takes, as you say, there does seem to be a groundswell of if that support, maybe just better education among the public. I'm a little bit more optimistic than I used to be. And I'm curious if if you are

Thom Scher  22:00

no, Stacey, I don't know what you're talking about. There's an election and 2020 has things going on that are crazy. I, I am optimistic. Look, I think the reality here is that the system is very broken. And we all know the system is very broken. The unfortunate reality about diabetes is that it's not that it's diabetes broken. It's that diabetes is the poster child for how broken the system is. And that means that we believe the answer to that is regulatory reform. It's it's actual legislation, federal and state. I agree. There's been a groundswell. And I credit grassroots activists that I credit the work of number of organizations for that I credit a handful of politicians on both sides who've done work on this arena. But we are hopeful. I think that we're starting to see policy proposals that make sense that are gaining traction. Do I think we're going to have it immediately, you know, all of a sudden, on one day, no, I think this is going to take time. But I think we all know that with time, this issue is going to only get worse, unless more is done. So I am optimistic despite what is a relatively sad view on the reality in terms of the state of affairs.

Stacey Simms  23:11

Well, thank you so much for joining me to explain this. I appreciate it. And you know, we'll check back we'll see how things are going. And I do appreciate you taking the time to address the criticism and explain the program. Thanks, Thom.

Unknown Speaker  23:26

You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms  23:32

As I mentioned, of course, we are linking up at Diabetes connections.com in the show notes, and there's a transcript there, by the way, as well. We do a transcript for every episode in 2020. And I hope to kind of go back and put more in. I've been doing this show for more than five years and more than 300 episodes. So there's a lot of transcripts to go back.

But I think it's really important that you get this information and that if you need the assistance that you get it, I would love to know what you think now that you've heard Thom speak out, I'm sure many of you are still quite upset he addressed the issue about taking money from the insulin makers doesn't mean that you have to agree with it. But I'm glad that he came on and explained the stance of Beyond Type 1.

I also want to add that I'm going to be doing an episode or social media post or something to get some information out. So as they say, watch this space, because I have a personal story. And I have a friend with a personal story. And we are both going through some difficulties using specifically Not a single amount but whatever the Lilly coupons. And as we are navigating through this, I am kind of waiting for the situation to resolve to share the information and what we've learned with you. So I really hope to bring that to you within the next week. But I will say there were two separate issues here. One, the annual cap that Lilly has that all the manufacturers have and how to get around that. And the second is why would it be difficult to use the Lilly coupon when you have commercial insurance if it tells you that you can. So there's a lot going on.

Anyway, more information as always At Diabetes connections.com Follow us in the Facebook group at Diabetes Connections the group or on social media me Stacey Simms, and I'll keep you posted on those two personal stories, one of which is my own story about using those lovely coupons.

Stacey Simms  25:13

Thank you to my editor John Bukenas from audio editing solutions. Thank you very much for listening. We will be back here on Tuesday with our regularly scheduled episodes. I will see you then, until then, be kind to yourself.

Benny  25:31

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

Linda Franklin is one of the strongest people we know - and we mean that literally! She holds world records for power lifting and has ranked at an elite national level for cross fit. Linda was diagnosed with type 1 at age 26 and reveals she struggled with management until she found her community. You may know Linda from the amazing Facebook group, Type 1 Diabetic Athletes 

In Tell Me Something Good, the dedication of a dad.

Innovations this week has an update on the longest wear CGM yet.

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 new 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 One Drop created for people with diabetes by people who have diabetes by Gvoke hypo pen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

Stacey Simms  0:27

This week, Linda Franklin is a world record holder for powerlifting diagnosed with type one at age 26. She's in her early 60s and at an elite level, but she says she really struggled with management until she finally met somebody else with T1D, who shared her passions.

Linda Franklin  0:46

And I was trying to do CrossFit and coping with the crazy blood sugars. And I was really having a difficult time when I met him. It was really an eye opener for him and meat. We were just so excited to talk to each other about things,

Stacey Simms  1:00

Linda and that friend Daniel went on to create a now well respected and very large Facebook group for athletes with diabetes. We'll hear more of Linda's story and get some great advice about fitness and type one

in tell me something good. The dedication of a dad and in Innovations an update on the longest wear CGM yet

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 Diabetes Connections. I'm your host, Stacey Simms, and I'm really glad to have you along. We aim to educate and inspire about type 1 diabetes by sharing stories of connection.

I don't know about you, I am on the edge. What a stressful time. I mean, this year has already been bonkers. I find myself, as they say, Doom-scrolling through Twitter, I was already on my phone way too much before this year. And it's just multiplied to the nth degree. Now, don't worry, I'm not going to talk politics here. This is not the place for that you do not come here. I am sure to talk politics. And if we were going to have a show about that, because let's face it, sometimes there are issues you would know before you heard me start talking. This is not that. But I do think it's important to acknowledge that politics is exhausting us.

Everything is exhausting us right now. And I thought it would just take a minute to share with something that is really helping me. And maybe you have your own version of this. Maybe I'll put this in the Facebook group when this episode comes out. And it's Diabetes Connections of the group. I really hope you can join us on Facebook. It's such a great group of super smart, wonderful people. But what's helping me is another podcast. It is pop culture, happy hour. It's an NPR podcast. It's been going on for years and years. I think they just celebrated their 10 year anniversary. And they just talk about pop culture for 20 or 30 minutes. It's fun, it's distracting. And what I have been doing lately because I just found this podcast this year. So there's a huge back catalogue to me. I'm going back and listening to podcasts from 2016 2018. You know, I'm listening to them talk about movies, and TV shows and things that were popular in the news a long time ago. And you know what? It's a great distraction, and it gives my brain a break. So I know you come here for diabetes news and not necessarily weird podcast recommendations. But man that is really helping me right now. Along with walking my dog.

Maybe I should give a little nod to fitness since that was what we're talking about. Actually this episode. You know, I live in the Carolinas. I live in Charlotte, North Carolina. We're so lucky. We live near a Greenway and the weather is generally pretty nice. So I have been able to walk my dog almost every single day. She's actually right here under the table as I tape. She's usually pretty quiet and when she's not, We edit that out. But my dog's name is Freckles. She's not very friendly. She likes us but she hasn't met anybody else that she likes yet. Except maybe my dad. He does like when grandpa comes to visit because he also walks her every single day. But man, she's an interesting character.

Anyway, we will get to Linda Franklin. That's why you're here. Linda Franklin, who is an amazing, amazing story, not just for her dedication to fitness and her passion for it her world records in powerlifting but her diagnosis story and what she found inspiring early on, and a teenage Bret Michaels how he makes an appearance. So we got a lot to talk about. But first diabetes Connections is brought to you by One Drop.

Getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test strip plans. Plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about not that surprising when you learn that the founder of One Drop lips with type one they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more, go to Diabetes connections.com and click on the One Drop logo.

Like many of you, when I have question about sports and diabetes, mostly about my son, I head over to the type one diabetic athletes group. It is one of the biggest Facebook groups there is. But it's also largely drama free and full of support. My guest this week is a big reason why she didn't start the group. You'll hear more about that in our interview. But she is an inspiring and I think larger than life personality, who challenges us each week with flex Friday and other fun posts. Linda Franklin is a world record holder in powerlifting. And before that, she placed 14th Worldwide in the 2014 CrossFit open this interview was conducted live in that Facebook group, you can watch it there it's recorded and then playback in the group. Or you can see it on our YouTube channel Diabetes Connections over on YouTube, I will link all of that up in the episode homepage as usual, at Diabetes connections.com It was great to talk to Linda here is our interview.

We don't normally take like this and who the heck knows how it's gonna go. But she's been such a great sport. And I'm so excited to welcome my guest someone a lot of you know quite a bit about but some of you may not and boy but a story. Linda Franklin, thank you very much for letting me in the group and agreeing to do this and fingers crossed, it all works out.

Linda Franklin  6:22

Yeah, it will.

Stacey Simms  6:23

Let's jump right in. Because this is a group for and about athletes. And I joined this group because of my son, who was a type one. And he's played a billion different sports. Most recently, he's more interested in wrestling. But I'm just so impressed with the amount of knowledge in this group. Do you mind just sharing how the group itself came to be? Sure.

Linda Franklin  6:46

So Daniel Borba, who has been a lot a little inactive lately, because he's expecting his second child, which is super exciting. But I met him back in 2013, my brother said called me and said, hey, there's a type one diabetic in my gym, my brother on the CrossFit box. And we were both so excited because he knew I didn't know anybody. And so I met Daniel, we did a little tiny podcast that just disappeared, you know, was wasn't much of anything, but it was so great to get to know him. And he'd been thinking about exercising and not there just wasn't much knowledge out there for how to control blood sugars, exercise, being type one, taking insulin, it's very complicated. So he just got decided to start this group and invited me and here we are. This was seven years ago from June, and it's blown up. Well, unfortunately.

Stacey Simms  7:44

Yeah. Well, I mean, there's good and bad, right?

Linda Franklin  7:47

Yes, yes.

Well, let's

Stacey Simms  7:48

talk about the good and a little bit. I mean, we're gonna talk about your story and all of your incredible accomplishments. But I'm really curious seven years ago, and that's about when I started my local Facebook group to the diabetes community was interested in in kind of different things. The technology has changed. Now the knowledge has changed. Do you remember the first kind of questions people had I imagined it was just how do I work out without crashing?

Linda Franklin  8:11

It was very small. We were like 300. To begin with, I would say for the first year, three to 500 people. So it got to be very intimate. And as the group grows, larger, questions become more voluminous. And you can start categorizing everything. But at first it was Yes, that was a big, big problem, or spike, what a really big problem was because it was really based around CrossFit to begin with was the spike after exercise. That was a huge, huge problem. And for me, too, because I was doing CrossFit at the time. And it was a that crashing and spiking after exercise was a big, big issue in the group, how to eat before you get started and when and how much and how much protein and I could go on?

Stacey Simms  8:57

Well, I'm gonna ask you to so I made a note of that, because I think it would be great to get some of your advice a little bit later on. But you said CrossFit, now I'm looking at your bio, and I don't even know where to start your soccer CrossFit world record holder now powerlifting let's go all the way back before you were diagnosed in your 20s What's your sport in high school? Like Were you always athletic?

Linda Franklin  9:24

I was a cheerleader. Okay, this was the 70s, early 70s back in what was cheerleading,

Stacey Simms  9:30

the sport that it is now because the leader in high school in the 80s and it was not an athletic sport.

Linda Franklin  9:36

No, it wasn't then, but I grew up with a bunch of boys and I climbed trees. I've always been a tomboy. And when I did sports in school and high school classes, I set the standing broad jump record in high school and you know, just stuff like that. I kind of excelled at every sport that I did. Except for basketball. I can't run in triple vault. So that was like, but I think my whole family's pretty athletic.

Stacey Simms  10:04

So when you were diagnosed, first of all, what was the process? Were you given an answer immediately or at age 26?

Linda Franklin  10:12

Was it? We don't know what it was strange. Like I've told someone before, or many people that women, it's typical when you have a lot of high blood sugars for a long time, or even a short period, yeast infections are a really big problem. And it was for me, and I was actually in the midst of bodybuilding, starting lifting weights. And this is what introduced me to weights which I found a real love for. And I started just eating a lot drinking a lot up on my ping and the yeast infections got super bad. I look like I walked like I'd been riding horse for. So I went to the doctor, gynecologist beat into a company says you need to go to the lab, like today. So I went the next day because I'm 26 living by myself and my back. Yeah, whatever. Okay, right. Yeah. And I drink in syrup all day at the lab. And by the time I was done, I was like, almost 800. So they said, we'll come back in a few days. And you're going to go see your doctor on Monday. And you know, but they let me go home. And it was really casual. I mean, they knew, obviously, I was diabetic, but they didn't put me in the hospital right away like they would normally now. And that's pretty much how it all got started.

Stacey Simms  12:07

Did you immediately think? Did someone tell you you can go right back to the gym? Or were you told don't work out? Do you remember anything different?

Linda Franklin  10:12

No, I just remember sitting in the doctor's office with a diagnosis on Monday morning. And he just literally went into a fog. He just said you know you're gonna, this is gonna cut your life short. And just all the old 70s routine. And he wasn't trained. I mean, it was an internist, or whatever you call them and wasn't really trained in depth about diabetes, treated mostly type two. So he did tell me not to do activity. But I didn't go back to bodybuilding because I wasn't feeling good.

Stacey Simms  12:07

What led you back to your activities at all, though? Because you didn't ultimately wind up not exercising?

Linda Franklin  12:14

Yeah, absolutely. So what happened though, is I got really active only to control my blood sugar. I refused insulin, I freaked out. Well, I didn't have parents looking over me gone for doing this. I didn't have

Stacey Simms  12:28

an endocrinologist either. As you said, You know, I didn't. It was

Linda Franklin  12:31

just pretty, pretty basic. And I just decided, Okay, well, after I eat, I'm just gonna I gotta jump rope. I jumped rope, or walked or ran after every meal for about three months, until I was down to eating out of a jar peanut butter and decided, I think I need insulin. I just couldn't do it anymore. But that's I just, it was ingrained in me to exercise anyway, before that. So I decided, Okay, I kind of laid off for a little bit. And then I got back into snow skiing and doing normal things. But I wasn't in great control or anything. But I still did stuff.

Stacey Simms  13:10

Yeah. I mean, you couldn't have felt that great. But you also don't want to sit home and not

Linda Franklin  13:13

feel great. No, I'm not wanting to sit behind and watch everybody do stuff when I know. So when did things start to get better? Actually, I would say right before my first pregnancy, I knew that I needed to get my ducks in a row before this happened. That was when I was 33. And I went to the sweet Success Program. But they were both my pregnancies were planned. And I decided I got my a one c under six and got pregnant, had my first baby. And then two years later, did the same thing. And then after that it got a little bit crazy again, you know, with kids and was hard to keep in control. But that's when I realized I need to do better. I didn't have a blood sugar meter, the first two years, I cut my strips into quarters to save money because the meters then would take cut strips, they won't know. So I did that. And I did all these things to save money. But I did a lot of injections to I was stacking insulin a lot up and down, up and down get really low get really high. And it was I was a mess. Before we move on,

Stacey Simms  14:21

you mentioned something called Sweet success. Is that a local program to you is that a hospital program actually

Linda Franklin  14:27

was a nationwide program, I believe for women type ones that get pregnant and they just start this program suitesuccess. I don't know if it's California based or if it is nationwide. I'm not really sure but it is I do know here in California and it was wonderful. He said he was at a more it was at a UC hospital. I was there every two weeks but they both went fairly well.

Stacey Simms  14:54

It's such a different time I think it's hard to understand is

Unknown Speaker  14:57

that

Unknown Speaker  14:58

not only the insulins were different But as you said the blood sugar meters were new in the mid 80s. It's not like it is now at all.

Stacey Simms  15:11

Right back to Linda answering that question and taking a look back. But first Diabetes Connections is brought to you by Dexcom. And we have been using the Dexcom G6 since it came out more than two years ago. And it's amazing. The Dexcom G6 is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that to our warmup, and the number just pops up. I mean, do you remember back before where you had to wait in a two hour warmup, and then you calibrate then it would start populating? It's just a great advancement. We've been using a Dexcom for seven years in December, and it just keeps getting better. The G6 has longer sensor were now 10 days, and the new sensor applicator is so easy to use. Benny does this all by himself. Now. We love the alerts and alarms, and that we can set them how we want if your glucose alerts and readings from the G6 do not match symptoms or expectations use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

Now back to Linda. And she's talking about what technology was like when she was first diagnosed.

Linda Franklin  16:20

No, there were no cgms there were no cell phones. I mean. So it was Harry Caray. You know, I especially being diagnosed in my mid 20s. I know some people that were diagnosis, children, their parents kind of monitored them and got them through high school into adulthood with a lot of success, but also got them real regimented. Whereas me, I'm 26 I've already got my routine and this gets in the way. And here I am gone. Uh, well, I'm just going to make do till whenever until you know more good stuff comes along. And I I suck at technology. But I sure do love it. I'm telling you.

Stacey Simms  17:00

Well, unless I'm laughing technology, I can't even get my your phone good wired things to behave. And you know when my lighting is insane, so we're in good company, sister. Don't worry about that. But let's talk about you said you started to turn things around a couple years after your second child was born. I'm curious, like, Did you meet somebody? Did you just say to yourself, Linda, I'm not feeling great. I want to do more. I got the CrossFit stuff going like

Linda Franklin  17:21

I'm actually no, I never did know anybody until the dots started. So I didn't really know anybody that was type one, until I was probably well, until I met Daniel Borba the founder of the group. That's why my brother called me said I met a type one because I really didn't know anybody than other. I worked in endocrinology office, and there was another girl there that was, but it wasn't the same as meeting and talking about

Stacey Simms  17:49

was it until you met him that you've got things. I don't see more under control. But you're such a success story. Um,

Linda Franklin  17:57

it did help because it, it made me pay attention to it more, I was kind of brushing it under the rug for a lot of years, like, Okay, I'm just gonna just shoot myself through my chains and just keep doing what I'm doing. And he put it in my face. And I was trying to do CrossFit and coping with the crazy blood sugars. And I was really having a difficult time. So when I met him, it was really an eye opener for him and me to talk about, we were just so excited to talk to each other about things. But before that, my whole connection with type one, and any type of anybody else out there with it. What were diabetes forecast magazines, and I'll never forget when I was in my mid to late 20s. I got one with Bret Michaels on the cover on my porch. I had it I have a T shirt, but it was so cool. I'm like, Oh my God, he's a teenager with type one. Wow. Yeah, it was it was weird. But I had stacks of diabetes forecasts and I would read them. And that's how I connected to it. There was nothing else to connect to really for me.

Stacey Simms  19:02

So tell me about CrossFit. This is not for the faint of heart. I don't even sure where to begin. I just think of people flipping tires. Right and to be ranked 14th in the world

Linda Franklin  19:13

at one point. Well, that was 2014 CrossFit open. Yeah. What goes into that? I got in. Okay, well, it's at that point in time, I was training five days a week. And in between all that I was riding up and down to the CrossFit box on a bike that had no gears up and down hills, like so, you know, I'm a nut. So that's what I did. And I just trained five days a week and did everything I could I mostly trained with it was all younger people in the box. So you know, at my age I started like I was like 57. So there just aren't weren't that many people who were that age in my box. So all these younger people in there and I'm going I gotta keep up.

Cuz that's my, that's how I think.

Stacey Simms  20:03

So take us through a little bit of how you manage diabetes, though, for something like CrossFit, when it is it's cardio with strength. There's just so much going on.

Linda Franklin  20:10

Right? Yeah. And there's a lot of variables and you don't know from day to day, and I actually had to talk to the owner there to give me the workouts the day before, which she doesn't know, CrossFit box likes to do that, because they don't want you to cherry pick their workouts, they want you to just come and do whatever is on the schedule that day. But I had told her, I can't keep doing this without knowing because I have to plan. And so she was kind enough to work with me and what I would do, I knew that what time the classes were, and after talking to Ronnie, my coach, back then he wasn't my coach, but he knew I was doing CrossFit. And he was actually an admin in the athletes group and said, you know, do some insulin and eat some protein and a small amount of carbs, but do half the insulin for it, and then go and take some Gatorade, put it in a bottle and have something to sip on, which is what I started doing, and it started to get better. But still, it was never perfect. It was really difficult. The ups and downs. And it mostly was the adrenaline afterwards kicked in. And I kicked in while I was working out. But afterwards, the blood sugar's were high for like 24 hours. And it was ongoing, you know, until I had to stop. Some days were different depending on the workout, but just some workouts just hit me really hard. So it was never stable.

Stacey Simms  21:30

Did you ever figure out how to handle this? I gotta tell you and I'm only dealing with a teenager. Yeah. Isn't CrossFit that much? Like he hasn't workout like that is what I mean. But we definitely have those adrenaline highs after certain sports.

Linda Franklin  21:42

Yeah, they're really tough alone. Yeah, soccer, I have really big problem with that, too. And my bigger problem, I think was all of it was that I would not eat. Like when I did soccer tournaments, I wouldn't, because I couldn't eat when I was out there running because I played striker. And it was, you know, a lot of sprinting, and I just can't eat and do that. So I wouldn't eat. And I think that is part of the problem was that I wasn't consuming enough food and taking insulin for it to get my blood sugar's down into a normal range. I think it's really important that people don't starve themselves around activities, just try to put your food in at a, you're not to stuff yourself, but eat the right things and take insulin for it, and you will get through it. It may not be perfect, but it will be better than if you don't eat at all, because your liver will raise its ugly head.

Stacey Simms  22:37

How then did you go to powerlifting, because that's just a natural progression, it's something happened to just see something or set a goal.

Linda Franklin  22:43

It was not a natural progression. I CrossFit, well, long term diabetes complications actually probably caused it I did with CrossFit, you do a lot of excessive gripping exercises, a lot of things are like do 100 days and then 50,000 level bar and you do the pull up thing. And with all the gripping that I was doing my overtime, your tendons thicken with diabetes when it's out of range. And so that's what happened and my fingers started to trigger all all of them all. But what happened for people who weren't familiar,

Linda, I'm sorry to interrupt you. Can you explain what that is? When you say okay, triggered?

Yeah, so trigger finger is you have tendons and all of your fingers. And there are two that go up to side. And there are little if you can imagine a fishing pole with a line on it with a little I don't fish but me there's, you know, there's a little you know, the little things that you thread the, the wire the line through, okay, so those are on your knuckles, and those of your tendons sliding up and down. So the line so when you when they get thick, and like weedy and stuff, then they don't slide as well, they get caught. So with the thickening tendon, it can't slide through the little shields that are on the side there on your knuckles, so they get caught and they get stuck, and then you pop your finger open. But it's a it's a really common problem with diabetes and in women that are my age.

So I went to UCLA doctor, he said, No, all your fingers are involved, and we're gonna have to do surgery. So I had a lot of hand surgery. And so I recovered and then I had shoulder surgery several weeks later, so I was just a mess for about a year. But I knew that I needed to get back to lifting I just I missed it so much and I just couldn't sit still my blood sugar's were starting to was gaining weight. I'm like, Oh, I just don't like feeling like this. So I talked to my brother who's a CrossFit expert. He's been in the games four times, and he told me you know, you could possibly power left and went back to the gym, started working on it, put a video in the Athletes group and I said, Okay, I've kind of reached a point where I don't know where to go from here. What do I do? And Rodney saw my video and he's like, let's talk. So we talked. And that's how I got started. Wow. What

Stacey Simms  25:11

is appealing to you? About powerlifting? I can think of a lot of things. But I'm curious, like, why do you do it? What do you get from it?

Linda Franklin  25:21

Oh, man, that's a really tough question to answer. I think it's a rush of, and there's obviously adrenaline involved, too, but just lifting heavy, it's mental. You know, obviously, there's a physical benefit for it. But the mental part of it for me is that I like feeling strong. I just love the feeling of being strong, or getting stronger. And I don't care about, you know, records are great and everything. But to me, it's just the feeling of being strong is wonderful.

Stacey Simms  25:54

What was it like, though? I mean, I know it's not about the records. There's a tremendous picture of you. I think you're breaking a record. And there's a crowd of people. I don't know if it's a video screen. I couldn't tell from the photo that I was looking at. And everybody's kind of cheering and robbed me, especially as cheering. Oh, you know what I'm talking about? Yeah, just Philadelphia

Linda Franklin  26:13

meet that. I went to, I believe, yeah. And in fact, that was me. And Roz, such who is in our group and does the daily workouts on the weekends, we did a meet together, Rodney coached six or seven of us out with a group, but there were seven type ones that did that. Wow, that meet in Philadelphia. So I flew out there from California, never flown that far in my life. But I did it. And we It was a blast. And it was a huge type. One thing was so awesome.

Stacey Simms  26:46

I'll come back to the other questions and about the records. But what was that like for you? I mean, as you said, You've never flown that far, you came all the way east to be with a group of type ones power lifting. I mean, that must have been an incredible situation just to be around everybody.

Linda Franklin  27:00

Yeah. Well, and, and in fact, I hadn't met half of them. But we had talked, you know, over social media and stuff for some length. And although Roz, I knew before that she had come out and handled me for a meet in California, which was amazing. Another one of us flew out from Portland. And it was just, I can't even explain how crazy it was with the blood sugars and all the beeps. And it was just insane. But we were all there cheering each other on. And you know, Rodney had his hands full. Let me tell you. That's awesome. It was pretty incredible.

Stacey Simms  27:35

What's different about managing blood sugar's when you're powerlifting? Then CrossFit, do you mind if is like a little bit of advice, maybe to for people who are looking to get into it.

Linda Franklin  27:43

What I found is consistency is key. And it doesn't have to be every day. Because when I first when I first started getting really back into exercise, after being diagnosed, I tried to do something every single day. And I don't do that now. And I don't feel that I really have to other than I don't sit down all day long. But what I find with it is, it's more of a weekly pattern, versus a daily pattern. And if you do, train over time, you'll start to see changes in your blood sugar's at first when I first started, it wasn't great, but I started to learn how to treat. I knew what my weak plan was. And I could say, Okay, today, I'm gonna have a little snack before I go. But typically, I know how to combat highs better because it's not random stuff. I know what I'm getting into. Because it's just easier for me. It's more predictable. And now my body feels that it is to

Stacey Simms  28:45

Is it a matter of keeping track and logs or looking at your CGM data?

Linda Franklin  28:50

A CGM data is important. I used to keep logs ridiculously back before anything was around, so I can't do that anymore. I tried it last two days, and I'm done. But I do keep a workout book. I don't record my blood sugar's though. But I do know that when I go out there, I'm in a range. I either put my exercise mode on, I take my pop off if I see it start to fall, but I typically run fairly flat. Unless I just for some odd reason. Something goes awry. And that happens.

Stacey Simms  29:23

You mentioned exercise mode. Do you use control iQ? Is that what Yes,

Linda Franklin  29:27

I do.

Stacey Simms  29:28

Tandem Dexcom. And it works pretty well for powerlifting.

Linda Franklin  29:32

It does when you're doing high reps. When I do heavier weight, lower reps. I don't mess with it. I just leave it alone. But I do. You know I have an exercise bike in the garage. I get on every once in a great while. I do it

Stacey Simms  29:47

a couple of minutes ago, you mentioned complications. And I feel like sometimes especially we as parents, we're so afraid to talk about that kind of stuff. Right? And the only way we want to talk about it is did you do it Right, with what did you do? What was your a win? See? How did you eat? Or did you at hell? You know, we were so narrow minded on that, that I just want to ask you, and I guess I'm, I'm trying to figure how to ask you. But first, let me say thank you for talking about complications in the first place, because it is something that happens. It's not something obviously, you have always taken great care of yourself, even when you were saying earlier that you didn't, you're active, healthy person. Is it hard, though, to share those experiences with the diabetes community?

Linda Franklin  30:29

Actually, it isn't. And I feel that I'm being helpful when I do that. Because it could be diabetes, it could be anything else. To me, it's part of living life. And I look at it as I've done the best that I can, I don't look at it as a bad thing. I just try to let people know as not to be afraid of it, I do as I get older, I do have some anxiety around it now like seeing my blood work. When I go to the doctor i get i get real anxiety around lab work and stuff like that, I it's just part of getting older. It's not just part of being diabetic. You know, my mother died from type two kidney disease. And I helped her go through the process. And it was really, it left a real whole, you know, and I but it also made me aware that I need to, I really need to be careful. And so when I wait for my labs to come, I'm always like, how are my kidneys, you know, that's the first thing I worry about, because of what she went through. I saw what she went through. But you can only be the best you can from day to day. And I just hate to see people beat themselves up day after day. And I have adapted to what my hands are now they're not pretty and they're not, you know, my palms are strong, my fingertips are weak, but I found something I could do to keep me healthy. So you just adapt around these things. It's what we have to do as human beings, regardless of what we're dealing with. And I think it's good to know.

I mean, I had someone reach out to me the other day about trigger fingers. She's been diabetic for almost 20 years, maybe I feel so good that people can reach out to me and talk to me about it. Because it's it's a real thing, just like frozen shoulder and all that other stuff in the end being type one diabetic. And I just think that it's okay. There are ways to handle it. I had a great surgeon, he fixed me up not perfect, but it's another chink in my armor. Now, and now I've got stories to tell right? down

Stacey Simms  32:22

it's life with or without diabetes. Yes. You had mentioned before we got started that your daughter had learned a lot from you, in terms of being able to spot diabetes. Can you share that story?

Linda Franklin  32:35

Yeah. So you know, with my kids, obviously, I've had two kids while being pregnant at 33 and 35. And both of them have had to give me glucagon. Unfortunately, I know, there's a lot of people that have lived as long with diabetes as I have and have never had to use it. But here I am. And they recognize signs just from being around me. Are you low? All the typical questions, but she worked at a daycare center and in a gym, and the couple brought their daughter there. She was 18 months old, and they dropped her off and she was not well, and my daughter was holding her and said, I think she's diabetic. I don't know what clued her in but there was some symptoms that this little girl was having that, you know, she recognized. I can't really tell you but I'm so thankful in a weird way that she did.

Stacey Simms  33:25

And and the 18 month old did wind up getting diagnosed.

Linda Franklin  33:28

Yes, she was the youngest in the county. Yeah, at that time. And actually she was it was in the hospital for quite some time and we ended up nannying her after that first my daughter, and then I did and I gotta tell you, kudos to you because I nannied her for six months, and I was a wreck. Oh, the literal wreck. I'm like, I can't do this anymore.

Stacey Simms  33:52

There is truly I mean, every there's no good. There's no bad he didn't do the type one right? It all stinks. But there is truly something unique about toddlers and very little ones. It is a it's a circus. Yeah. It's just it you have to laugh.

Linda Franklin  34:07

Because thank God, I know. Well, you know, the parents were super cool. And they just wanted her to be they loved having us there. And they knew that I handle it. But the thing is, and they were regimented, but not to the they want her to live a normal life. And it was so great to know that not to restrict her so much that she couldn't have fun. That's great. That's, that's funny.

Stacey Simms  34:30

So a world record holder, all this wonderful stuff. You are in your early 60s. Now what do you have any any other goal or is there anything you're working on now? I mean, you've done enough You don't have to.

Linda Franklin  34:44

Actually I am signed up for me to November, but it's November 7, in LA there's COVID there's the election. I think I may just pass on this. I'm really giving it some serious thought and I think it might just I might just do a mock meet at home. You know, I'm a little scared about the COVID thing, because I've had diabetes for so long and, and my age, even though I'm healthy, I don't know how much vascular disease I have. And they do say that that's an issue with it. So I just want to be careful. And there's no point in me really stressing out about something like that right now. It's not that important to me to go do so I figured I could just do a fake one in my garage. Hey,

Stacey Simms  35:24

I've seen some pictures of your garage, though.

Linda Franklin  35:26

I'm not what I was

Stacey Simms  35:28

gonna say you. Did you put that together this year?

Linda Franklin  35:31

Yeah, actually, some young kids here at the gym locally, the gym shut down. They had it at the gym, back up, and they sold it. And I bought it. Oh, I was very blessed in that regard. But yeah, so it's little tiny, single car garage. But I got it all in there. Just what I need. And it's working great.

Stacey Simms  35:49

I'm curious. After all this time, it must be just such a part of your life. But do you still have to get psyched up to work out as often as you do? Are there days where you're just like, I'm laying in bed on none of this nonsense?

Linda Franklin  36:00

And not very many? Yeah. I have them every now and then I had one just I think it was Sunday. Actually. It was like, yeah, I'll just put it off to tomorrow. But no, I have to set goals. Oh, to stay motivated, you know, but I I'm always looking for a goal. I can't not have one. And I think it's really important for people to have goals, but not to get so hung up on it. It's not a failure. If you don't meet it, it's the fact that you're working on something is the success.

Stacey Simms  36:30

Before I do let you go here. I'm curious. There's so many people in the group here for support here for advice. If somebody is just kind of dipping their toe in the water as an adult with type one or a parent of a kid who's you know, playing high school sports, any advice for them? I mean, I would assume that with the technology that we have, things are easier, but there's still some basics that you have to think about.

Linda Franklin  36:50

Yeah, well, there's always a couple things I preach about. And one is when I did have that really bad, low blood sugar, my daughter's boyfriend's a firefighter. And he said, Hey, you need to get up a box of and put on their low blood sugar type ones, snacks, or whatever you want to put on there. But make it bold and let everybody know where it's at. So when you go to sleep at night, and you start to have a low, it's always so important to have something on you or near you all the time. It doesn't have to be like if you're in the house, big deal. It could be across the room. But when you're in bed, and you're sleeping, you should have something by your bed, it gives your parents peace of mind. Or if you go play sports, you need to let everybody know that you're diabetic. I when I first joined a soccer team, that's the very first thing I did. I'm actually proud to be diabetic. Not that I like having it. But I'm proud to tell people look at this is me, this is what I'm going to do. And I want you to support me because I'm going to do this. So I think it's important to embrace it. Just let people know, don't hide it from anybody. And because they'll feel guilty if something happens. It's not fair to them, either.

Stacey Simms  38:00

It's a good point. Yeah, it makes it easier for everybody. I always feel bad when people or kids are shy.

Linda Franklin  38:04

And it's an educational point to you know, you bring it up and didn't tell people I had a guy asked me the other day goes home. You got it bad.

Unknown Speaker  38:12

Yeah, you had the bad kind.

Linda Franklin  38:15

Okay, so we sat for about a half an hour after about the night school.

Stacey Simms  38:20

I just curious too, is anything ever happened? Where like it's popped off? Or somebody hit it with something? You know, My son has all sorts of crazy stories. Oh,

Linda Franklin  38:28

actually, no, I've been pretty lucky. I'll just you know, knock it off on a door jamb or something. But you know, that's happened a couple times. But other than that, I'm pretty careful

Stacey Simms  38:37

with a thanks so much. This was so fun. Thank you.

Linda Franklin  38:39

You've asked questions I've never been asked before. I love it.

Unknown Speaker  38:48

You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms  38:54

You can find more information on Linda and articles on her and find that picture that I mentioned with Rodney Miller and I will put that in the Facebook group as well. But you can find everything at Diabetes connections.com. Every episode has its own little little almost like a blog post. But every episode has its own page with a transcript as well. You can listen you could download the episodes. You can listen on any podcast player. I mean, at this point wherever there is audio on Stitcher, Pandora, Amazon, we're all over the place. You can find Diabetes Connections. Up next Tell me something good with a very devoted diabetes dad.

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. And that's where the Gvoke Hypopen comes in. It 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 in usability studies 99% of people were able to give Gvoke correctly. I am so glad to have something new find More go to Diabetes connections.com and click on the G voke e shouldn't be used in patients with pheochromocytoma or insulinoma. Visit gvokeglucagon.com slash risk.

In Tell me something good This week I want to share with you this story. This is so adorable. I found this on Facebook and I think it do need to see the photo. So I'll link that up in the group as well. But I will describe it the best that I can. Let me read the caption first from Andrea and she says yesterday we went to Mayci's endocrinology office for our first of three pump training classes. Mayci was given the opportunity to put a trial failing pump on to get the feel of it and become used to it. She was a bit afraid and apprehensive at first. Now looking at this photo, I want to say Mayci is maybe three, maybe four. She is a preschooler, I know that much. And the pump that they're talking about is the Omni pod here. Andrea goes on to say, Daddy stepped up and volunteer to also get a trial sailing pump. He's not type one to help support and show me see it is no big deal.

And this is the cutest photo of the dad right next to me see, and they're both showing off Omnipod on their arm. And she looks a little nervous. Still, you know, preschoolers are doing that smile, and they're a little nervous. But then it's got to be great to have her dad next to her doing that. Kudos. I think by the time this photo has posted the time has gone by maybe two weeks, and she may have already been live with the Omni pond pump. And I hope things are working out great.

I tell the story in my book, the world's worst diabetes mom. But one of the things that made me the world's worst diabetes mom is that I never tried on any of the technology. I never, you know, I never tried to make Vinny feel less alone. It sounds terrible when I put it that way. But I never put on a pump instead, I never put on Dexcom several reasons why. First of all, we're so lucky Benny has been surrounded by friends with diabetes, since he was diagnosed. No, we didn't have anybody close to us. We didn't have any people in our town or our school until at the end of first grade. And he was diagnosed at two. But we didn't know people through jdrf. And we didn't know people that we could hang out with and see one of my best friends started a little diet buddies thing for little kids. So we always knew people who had the same tech on that he had. And the other reason I never did it is because I was so afraid that if it hurt me that I would never be able to put it on Benny again. And that's true. I was terrified that if a pump in set hurt or a shot hurt or late by the time I had Dexcom he was he was nine years old, it didn't really matter anymore. But if that hurt, I had hardened my heart in the way that you do in this terrible way that you have to do when you are doing medical things necessary things to your child. And boy that sounds so dramatic when I put it that way but I think a lot of you understand what I mean. And we had caregivers who did it for themselves just because they wanted to experience it and said oh it's no big deal. It'll be fine. I was never sure it would be no big deal. Is that interesting how we as parents do things so differently?

But back to this fabulous dad if you have a Tell me something good story, you can always email me Stacey at Diabetes connections.com or just drop it in the Facebook group I every so often, and they are always such great story. So thank you so much.

quick look at innovations this week a segment I added this year Sensionic holdings which is the company behind the eversense implantable CGM, they have announced they are filing for a supplement application to extend the wearable life to 180 days. What does that mean? It means Hey, the FDA is now considering letting the eversense CGM system expand 280 days in the US that is quick math six months. And that is up from the three months that it is currently allowed for, you probably haven't heard too much about ever since recently. And that's because honestly earlier this year, wasn't clear that they were going to make it with COVID. Everything else that had happened, it really seemed like the future of the company was in doubt. But they cut a deal with asensia diabetes care, which used to be part of Bayer diabetes. So very, very big company here, which I think is a good move for the ever since we've looked into it because with many wrestling and who knows what will happen with wrestling with COVID. But workouts are starting again pretty soon as I can't imagine they're doing actual wrestling. I'm guessing this is more just fitness workouts. But wrestling is a really tough sport for diabetes technology as you can imagine, because everything's fair game, so somebody could put their hands pretty much on you almost anywhere that you could put a Dexcom or a pump in set. So we've got a lot of great advice from people who've been there. And we've got lots of good methods but we are looking into ever since as a possible backup plan. It's weird to think about because you know, full disclosure here you know, we use the Tandem X to with control IQ which means we need the Dexcom G6 right now. So that kid could have the ever since under his skin and then the Dexcom has Well, not during wrestling season, I don't know what we're going to do. But as always, I will keep you posted on that. But if you have any news for innovations, and that does not have to be a big technology news story, it can be your hack your tip your trick for diabetes, please let me know as well.

I said a couple of weeks ago, this was going to be a very busy time in terms of news stories in the diabetes community always seems like fall has a lot going on. And that is definitely the case. podcasting is really hard for breaking news. But I do my best when something happens to kind of go more in depth and give you a perspective on it by talking to the actual players involved. So I hope you're in the Facebook group or follow me on social media, because that really is the best way to stay on top of what we're doing here. I don't mean to be cagey. But in terms of the timing of the podcast, there are a few things that I have that I've taped that I hope to release in the next two weeks. And as I'm talking to you here, as I'm taping this episode, I've got like three different news stories that I'm working on that I don't know, maybe they'll be old news by next week. So got to do the best we can with the weird time shiftiness of podcast, or maybe someday somebody will pay me to do a daily diabetes news show. If that's you, let me know. Ah, thank you, as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

Benny  46:28

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

It's been a busy fall already for Medtronic; they've acquired Companion Medical and the FDA approved their 770G pump. Stacey catches up with Diabetes Group President Sean Salmon to talk about that and much more. Find out the difference between the 770G and the upcoming 780G, their plans for longer-wear pump insets and when they might have a no-calibration sensor.

In Innovations this week, a new study showing the benefits of once a week basal insulin. It's called Insulin Icodec.

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 new book: The World's Worst Diabetes Mom!

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Episode Transcription

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke hypopen, the first remixed autoinjector 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, catching up with Medtronic, we're talking about the newly approved 770 G, looking ahead to the 780 G, their acquisition of In Pen and how they think they've cracked the code on longer where pump in sets,

Sean Salmon  0:42

the things that are in insulin to keep it from going bad. The preservatives, if you will, are behind a lot of that sort of site actions that you get. So we're able to take that stuff out and have just filtered Insulet. a queue will deliver to the site. That's really the magic behind getting the extension of use.

Stacey Simms  1:00

That's Sean Salmon. He heads up Medtronic diabetes group. In innovations this week, a once a week basal insulin, how would that even work?

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 so glad to have you if you are new welcome. Glad you found us We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed right before he turned to back in 2006. And we have his high school sophomore 504 meeting this week. Yeah, it's virtual. His whole school is virtual. I've shared on the show before he is part of a very large school district in the Charlotte, North Carolina area. And the whole district has been virtual. younger kids are starting to go back to school in October. They're staggering it right now High School won't go back in person until January at least that's the plan.

So I'm really interested to see how they handle this 504 meeting. He's had one, you know, we've been diagnosed since he was two. So he's always had one. In our district. We have a separate DMMP a diabetes medical management plan that covers a lot of the basics that are maybe in your your child's 504, but I assume this will focus on testing. I don't know. I mean, he's home. So you know, he can go to the bathroom when he wants he can drink water when he wants. I'll share more about that though. Mostly, I think this is about keeping our place in the 504 for things like the ACT and the PSAT and all that testing and he is so thrilled, but it's going to be coming up.

Another thing I want to tell you about real quick is Hey, in September, we saw a big boost of sales of the audio book of the world's worst diabetes Mom, you know, this is my book, it's part memoir, part advice, stories, real life stories about raising a child with type 1 diabetes. And the audible version has been very popular. And I'm telling you September, I don't know maybe end of summer and everyone decided to get an audiobook, but audible loves when that happens. And now I have two free copies to give away, you do not need to have an audible account, you don't even need to really start one here, you're not going to be signing up for something you can't get out of you do need an Amazon account.

So if you want the copy, I'm not doing a fancy contest on social media, I probably should. But all you have to do email me Stacey at Diabetes connections.com put audio book in the subject line and I will give you the first two people who do so a free book will make it very simple there. If you're interested in perhaps the paperback or the ebook, you can head on over to Diabetes connections.com or it's on Amazon, whatever is easiest for you.

One more thing and it's an apology. Last week I apparently mixed up when I was talking about Medtronic 770 and 780 G. We do clarify that in the interview here with Sean Salmon. But to be clear, the 770 g was recently approved in the US. It is basically the same as the 670 g except for the addition of Bluetooth connectivity for data sharing and remote monitoring. And as you will hear, you'll be able to update the 770 G and future Medtronic pumps at home just like your phone. Alright, Sean Salmon. With that and a bunch more we go down a laundry list,

but first diabetes Connections is brought to you by One Drop, and I spoke to the people at One Drop, I was really impressed at how much they get diabetes. And it makes sense when you think about it. Their CEO, Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes, and the people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies deliver no prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check One Drop diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo.

My guest this week is Medtronic Executive Vice President and President for the diabetes group, Sean Salmon. And we spoke just as the deal for Medtronic to buy companion medical makers of the In Pen was closing. So that is a done deal. Now, In Pen is a smart insulin pen, you're probably familiar with it, it keeps track of dosing and recommended dosing, sort of like what you'd get with an insulin pump, you still have to inject, but the dosing can be automatic, the app will tell you exactly what to do. And keep track just like an insulin pump does as well. We talk about that. And a lot more here. Here's my talk with Sean Salmon.

Sean, thank you so much for joining me. There's a lot going on at Medtronic these days, I appreciate you spending some time with me and my listeners.

Sean Salmon  5:44

That's my pleasure. I appreciate the opportunity. Thanks, Stacey.

Stacey Simms  5:46

We're gonna go down pretty much a laundry list of technology and questions from listeners and things that they want to know. But let me start slow. And just ask you, how are you feeling about everything these days, we've got delays because of COVID. We've got, you know, a year like no other it's a cliche at this point. But you know, in your own words, how are things these days at Medtronic, and in terms of, you know, what you're looking at going forward?

Sean Salmon  6:09

Well, it's interesting, right? I think we're all living through some unprecedented times, just everywhere in the world right now. And it's certainly challenging. But at the same time across Medtronic, you know, I think we've got such a rich pipeline, and just about every single business, it's, it's exciting to see what you know, what the future is gonna bring, we get past some of these near term challenges. I've been here for 17 years, I can't remember a time where we had so much innovation all stacked up, ready to go

Stacey Simms  6:34

Well, let's jump in and talk about it. One of the first things I want to ask you about is the acquisition of companion medical. And this is the startup they've got the in pen. This is the I think my listeners are very familiar with it. And we've done episodes on it. So tell me a little bit about what the plan is, for companions in pen product with Medtronic, what are you gonna do with it?

Sean Salmon  6:59

Yeah, sure. Well, maybe I'll start out with, you know, why did we decide this was a good idea? And yes, I came into this role. Yeah, you whenever you start a new job, it's been about a year from now, the first thing you do is you formulate a strategy of how are you going to serve your patients in the market? And it's really, you know, strategy is really a question of, what are you providing for who, when you start asking those questions, it really narrows down what your focus should be in, and didn't take that long to sort of Peel apart? What is it that are people living with diabetes are seeking and how are they? How are they being treated today. And if you look around the world, it depends on the country you're in. But multiple daily injections is the most frequently chosen therapy, it's something that ranges between 60 and 90% of the treatments that are out there.

So you know, really the philosophy app is that for us to know, what are provided for whom we need to know, you know, where do people where are they on their journey? And where do they want to go. So, you know, injection in and of itself is a fine therapy. But there's just really variable outcomes that patients are being able to get from that. And a lot actually about just the, it's made difficult by the fact that you really don't always know how vigilant you are, how much insulin you've taken, how much you have on board. And it's very hard to keep track of all that. And what companion has done with the implant system, of course, is to track that insulin, so you know exactly how much is given at the right amount of time and have some estimation for carbohydrates, the ability to load that up. And then of course, the CGM data is there. So when you have those components, a lot of that difficult math calculation about how much insulin Do I need to take at a given time is made simpler. And we can extend that by adding a lot of what we have within our automated insulin delivery systems, algorithms, personalization of those algorithms into that experience with a pen.

So if you will, we're trying to close that open loop, or at least close it down some and what we do with automated insulin delivery systems as we have this track record, right, have you just recording CGM data over time, and knowing what the influent amount is, you can really get to an understanding of how individuals kind of respond to insulin, and more personalized, the amount of dosing that happens. So get an even tighter connection to how much insulin someone needs to take at a given point of time. Of course, on meal handling, that's the place, we're really pushing a lot of our technology, we have a very large and capable group that does data science and artificial intelligence. And all that really means is that we're able to take large data sets, and then put them into actionable insights that really simplify how people can get better control without having to do anything.

And one of the really interesting areas we're investing in right now is around meal handling. So we can with our technology have a really good sense of when you're going to eat. And we can confirm that some gesture control technologies that come from a wearable like a Fitbit, or an apple watch or something like that. That tell us can confirm that some is eating. So in that instance, you could, for example, remind people, there's been no bolus given that it's time to bolus. And if you miss just two boluses a week in a meal, that equates to about a half point increase on the A1C. So obviously, outcomes can be made better. But the important thing is that it's done in a sort of an invisible way or helpfully in the background way. We're not asking somebody to anymore, which I think is really the sort of driving principle behind what companion medical set out to do within pen spec, this least burdensome as possible? Well, we can add a lot of technology that isn't visible to the user, for the most part, but can really drive a better experience and better outcomes. So what we're trying to do with a closed loop we can bring to this open loops, I said, and that's really, I think how the two fit together can help it a lot of ways.

Stacey Simms  10:58

A couple of questions about You just said you. You mentioned the gesture technology. That's Klue, right. You all acquired Klue this year.

Sean Salmon  11:03

Yes, exactly.

Stacey Simms

Is that going to be part of a companion medical system?

Sean Salmon

Yes. So the idea is, we're going to have that for any means of insulin delivery, right. So it's the ability to detect that somebody is in the process of eating. And the absence of any kind of bolus is a great opportunity to say here, let me give you a helpful tip here and remind you to bowls, whether you're pushing a button on your pump, or you're, you're reminding yourself to bolus we can drive some improvement there. And it was evaluated in a recent study that we did. It's a small study. But we showed that we could fact drop a one suit by a fairly sizable amount just by bolus reminder. Now, ultimately, I think we can use Klue and that technology in a way that can actually automate the delivery of bolus so nobody has to do anything within a sort of closed loop system. But you know, that's, that's some more work than where, or whatever to do it. Absolutely. It's

Stacey Simms  11:53

you heard me laugh, because, you know, just by bolus reminder, parents around the world have children with Type One Diabetes would argue with you that a simple bolus reminder in the form of a parent does not make that much of a difference. Yeah. But I hear you, I

Sean Salmon  12:07

think it Yeah, I mean, the difference here is the bolus reminders, and just it's time to bolus what we can do. Knowing the history of how much insulin is on board. Get a quick estimation is the medium small, large amount of carbohydrates being consumed, we can tell you how much to bolus not just that you need the bolts, right? which we think is a helpful insight.

Stacey Simms  12:28

When you talk about Klue. It also makes me laugh as you listen. As I talked about Klue, we did an episode with them in the past if you'd like to learn more, and Sean , I laugh because every time I talk about Klue I do the gesture of eating food. I don't you can't see me but every time I mentioned it, I think that's because that's how it was explained to me when they first demonstrated it. It's a really interesting technology. But that'll be in not just pens, you're planning on using that in pumps as well.

Sean Salmon  12:53

Yeah, so you know, Klue actually runs on on a wearable. And then it talks to the algorithm that's either you know, on your phone for your pen, or can be the algorithm that's driving the automated insulin delivery system. So think of it like a sensor, and the sensor gives input so that the algorithm knows what's happening. And it lends itself to any means of insulin delivery.

Stacey Simms  13:15

One of the big concerns and you know this when a large company buys or acquires a small company or product the big concern is that you know, it'll be shelved or there will be big changes to make it more proprietary. The in pen is now used with Dexcom and the ever since implantable CGM. Can you reassure people who are using it right now that you're not going to change that I assume it'll be used with a with a Medtronic sensor, but will you continue with the sensors that it is integrated with right now?

All right, right back to Sean answering that question. But first diabetes Connections is brought to you by Gvoke hypo pen, 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 hypo pen comes in. It's the first auto injector to treat very low blood sugar Gvokek Hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies 99% of people were able to give Gvoke correctly. I'm so glad to have something new. Find out more go to Diabetes connections.com and click on the G voke logo. gvoke should not be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon comm slash risk.

Now back to Sean , talking about Medtronic plans to continue in Pen with its current partners.

Sean Salmon  14:44

Yes, we have no plans to take away anybody's sensors from them. But we're not entirely in control of that. So if if sensionics and Dexcom plan to maintain that access and then we're game we want to make sure that people have the support they need

Stacey Simms  15:00

When you say you’re not in control of it, you’re talking about what Dexcom and Eversense would do,  you're not talking about something on your side.

Sean Salmon  15:07

No. So the way all this works is you have to have, depending on what platform of phone you're dealing with, you have to have a thing called an API, which is basically a hook of software into the algorithm. So somebody on Sony decides they don't want to have that access to the longer they can turn it off. But we're not going to turn it off. We don't have control over that. So our belief is that, you know, if we're meeting patients where they are, and they're on a Sensionics device, we should maintain that access for those patients. Of course, we want to open up access to our own CGM. So we have a lot coming in the pipeline for CGM, which is pretty exciting. But no, I understand the sentiment that when you a large company buy something that they want to shelf it This isn't like big oil buying biofuel. Right now we're, we think we're gonna bring a lot better experienced to patients by combining the best of what companion has developed an impact with what we're endeavoring to do with things like Klue and neutrino and a lot of other personalization algorithms that be used in the closed loop side.

Stacey Simms  16:08

So let's talk about sensors. Let's just pivot right to that first, though, before we let this whole thing go within any timeline and integration with the guide. assume it's with the Guardian, CGM.

Sean Salmon  16:17

Yes, so initially, we'll have Guardian, but there's no we have three or four, five actually different generations of sensors coming and it's going to be compatible with everything we develop going forward as well.

Stacey Simms  16:30

Let's talk about Guardian Connect. This is the standalone CGM doesn't need to be paired with an insulin pump. Tell me a little bit about the reception of that, what the plan is for it. And you know, Who is it for?

Sean Salmon  16:41

Yes, so I think a standalone Guardian has been sort of an on ramp to be able to use an integrated CGM with our pump. But frankly, I think the experience that we've provided with that needs a lot of improvement. That's what we're endeavoring to fix with the pipeline. And there's two parts to that one is finger sticks, you know, to, to calibrate or to confirm before dosing as required finger sticks, and that's something that we are trying to remove in the next generation. And the other one is on just the, the ease of putting it on. And it takes a lot of overtaken steps to insert, and generates a lot of trash in the process. So all of that's problematic. And we're, we're moving to an integrated platform where the sensor, and the transmitter all in one, easy to apply three step, just press it on your body kind of approach. And in the interim, reducing or eliminating the need for finger sticks. That's what the near term pipelines about and then longer term, we can take the size of that down even further, we're already taking about 50% of the volume down from one move to next, we can get a lot smaller than that we have some really interesting technology that uses something called a wafer fabrication, which just means you can make very small electronics in a very highly repeatable way. So you take a lot of variation out.

And then of course, you know, making sure that we're continuously improving the reliability and the wear life of these devices. There's a lot of technologies we have aimed at to to ensure that that happens. And simple things like we spend a lot of time money and effort developing patches is going to stay there, you know, the adhesive that won't interfere with the skin, but will stay there through very difficult conditions. And it took a lot of engineering, we actually did a lot of work in the fields in South Florida, just you know, high humid, very hot heat to make sure that we would have this he's up just right. So there's a lot going on in the CGM side of things. That's pretty intriguing.

Stacey Simms  18:40

I'm curious, and this is a very specific question. These future generations, any plan to go straight from a CGM sensor to a watch, that's something that just seems to be very difficult, you know, no phone involved in between? Nothing like that.

Sean Salmon  18:55

Yeah, no, it is difficult. And it's difficult for a lot of reasons, including power management of how that that Bluetooth connection is different than one to a phone. So I think as as watches evolve, and maybe that technology changes and the ability to kind of talk a lot of this on the kind of wearable side of things. It's not entirely just what can you do with your CGM, your algorithm said some, it is more complicated than you'd think, you know, hopping from phone to watch that takes the processing power and the connectivity that's already there. But think of it like a highway, right? There's like so many lanes have a highway that you can drive a car on. And if the watch is already tethered to one, one connection by Bluetooth to your phone, you've got fewer lanes available, other connections. So that's really, you know, it's I don't get too technical about it. But that's really the the near term challenge. But you know, I think there's strong interest in this. And as the wearables progress, I think we'll have the opportunity to to do things like that. But right now, it's just complicated.

Stacey Simms  19:56

All right, let's talk 770 g This was approved by the FDA in August, and it's down to kids as young as two, my understanding was for the approval. Now I'm this is gonna pardon my take on this. And this is for all of the pump companies. I wish you guys would call your pumps, something that told us more about it. I don't know if it's a medical device thing, and I have this problem with Omnipod and Tandem and everybody else. But you know, it's all numbers. So tell us a little bit about what's different from the 770 g to the 670. And then to the 780. Like, right, what's different about this pump?

Sean Salmon  20:33

Yeah, so the the biggest difference other than age education, which does, you know, it's still indicated for people over the age. I think there was some confusion at first said it's just for kids, and it's not Oh, kids. Yeah, so I, you know, I think that the biggest difference is really the inclusion of Bluetooth connectivity with this with this device. And that does a number of things. So first and foremost, it allows a person or a parent or caregiver to see the CGM pump date on a film. So we we've been lagging in that competency. Now that's available.

It also allows the carelink system which is our management system glucose to automatically update so that you can do things like telehealth visits, right. Or if somebody's going to the doctor's office, rather than that, that kind of interruption to the workflow where the pump has to be connected and then downloaded, that really slows down that visit for for the person that's, you know, at the visit, it slows down the workflow for the health care providers. So the ability to take that connection and automatically upload it at your convenience without having to do anything, is what that connectivity brings to us as well. And then finally, it goes all the way to we can when software becomes available, make upgrades. Or if you have to patch something knows you know how to get out of your phone, where they'll have a new version to patch up something, you can just push that over the air. So we have that capability to upgrade future algorithms without having to connect anywhere.

Stacey Simms  21:59

So just to be clear, this is like what we do with the Tandem X2, you plug it into the computer, you get the latest download, it changes the software in the pump, and then you're off and running. Same thing, plug it in,

Sean Salmon  22:09

that was what one big difference, we'll plug into the computer, it goes over the air, just like you can update your unit up to your phone over the air today. If you changing your operating system, it's the same idea. You can do this without having to have a computer or having to plug cable in,

Stacey Simms  22:24

do you need a doctor's prescription for changes? Or is that a change by change? I would assume there might be?

Sean Salmon  22:30

Yeah, it depends on the change. So if you're talking about, you know, a security patch, you don't need a prescription for that, if you're talking about moving to the next algorithm, like the difference from 770 to 780 is really an algorithm change. It's the same hardware platform that would require a prescription.

Stacey Simms  22:45

So let's talk about the 780 which is the I assume this is the next thing in the pipeline and following the numbers.

Sean Salmon  22:52

Yes, so we we have released the adult data for the 780G, which at is about the algorithm now at the American Diabetes Association began this year virtually. And really, there's a couple of differences here. What this device does now is it takes the Ability Beyond just basal insulin, but also to bolus where you can the situation where there's rising glucose, the algorithm can bolus every five minutes to control. Somebody maybe missed a meal bolus, so they miscalculated how many carbs they ate, for example, and blood sugar still rising, we can predict where it's going to go both correct it without stacking up insulin. So what all that means is we can drive better time and range when there's there's missed boluses or miss calculations on carb counting. That's one big difference.

The other big difference is the target that you set these two, so you can set a target, as you may know, on the 670 G, the target you can set is 120, we can still set a 120 target on this algorithm. But we can also set that target of 100. And the clinical results that we showed, were clear that you could take the target lower without increasing the risk of hypoglycemia. In fact, it was so numerically lower rate of hypoglycemia. So this, this algorithm, I think really gives a lot more freedom. And that's, I think the biggest thing that we were looking for all these are great, you know, time and range, we've been leading that the industry and being able to provide the best time and range, but the user experience got a lot better. And a lot of it had to do with alerts and alarms and all the things that we did. And I think To put it simply, there was a belief as the first hybrid closer algorithm out there, that whenever something goes awry, that you should kick somebody out of what was called auto mode and have them go confirm something with like a finger stick.

Because I think the belief at the time was that you know, you can't trust his algorithms take care of somebody, and a person is better off better able to manage their diabetes than a machine. And I think that was probably a fallacy. As it turns out the algorithm that what we change here is we just aren't kicking people out. We are waking people up in the middle of night do things the algorithm pretty good at smoothing things out without causing any new troubles prevention. So a lot of that, I think out of abundance of caution safety alerts, kicking people out asking for fingerstick calibrations was unnecessary. And we're seeing a big reduction in all of that and very high satisfaction among the people in a clinical trial. And we've launched it in a limited way in Europe so far, and feedback has been really tremendous. This is a very big improvement of what we had been offering a couple

Stacey Simms  25:25

of just questions for clarity, Sean , the you're talking about the algorithm in the 780? Right, the 770?

Sean Salmon  25:32

Yes, that? No, that's 770 is basically the 670 algorithm. The big difference is really that indication of age, as well as the the ability to upgrade

Stacey Simms  25:44

software. If you want a pump right now that you can then upgrade when the new 780 algorithm is available. It's got to be the 770 you can't upgrade. Yes,

Sean Salmon  25:54

yes, you're correct. Okay.

Stacey Simms  25:56

Um, to that end, just again, just to clarify, are there other ranges you can set? Is it totally customizable down to 100? Or is it 120, or 100.

Sean Salmon  26:06

So you can choose, you can choose either target, but you can adjust other settings like the part ratio like insulin sensitivity factor. So there's some customization that can get there. And we ran, I think, three clinical trials. And we're currently doing what we call a continued access study in the US where we're trying to optimize those settings, to make sure that we can get the very best experience for people with the pump. And I think what we've learned is there's a lot of these other settings that we can give more help to the endocrinologists to be able to set those but right now, those settings are, are the endocrinologist job to go fix, we can give them suggestions. But the user themselves can't make those adjustments as easily.

Stacey Simms  26:46

Wait, I'm confused. The endo can make some changes, but the users can't.

Sean Salmon  26:50

Yeah, so there's certain things again, it's about making sure that people are safe, where we could recommend changes, or the algorithms can change things along the way. But there are certain settings like these carb ratios and everything else that need to be dialed in. Yeah, but

Stacey Simms  27:03

the user can do that. Right. I don't have to bring the pump to my endocrinologist and say, I Well,

Sean Salmon  27:07

they can, but they should they should make sure that you're talking to

Stacey Simms  27:11

Got it, yes, no, no with it with the guidance of an endocrinologist, but you're not going to make me get a prescription to change my carb ratio.

Sean Salmon  27:17

No, no, no, I think it's just that we can really fine tune the system. But rather than experimenting on yourself, I think we can give some help to know what are the optimal settings for you. And that's know something we call personalized closed loop is, we could do that automatically in the background without anybody talking to anybody. That's one of our future pipeline projects, we can also tell you from the history of your glucose and insulin data, how you can get a little bit better precision for somebody. And I think that's what we're trying to do on the carelink side of things. Here's the ability to really dial this in the right way. I think that for some endocrinologist, that's not going to be helpful, right? They're very, very good at this to do it all the time. And then there's others who don't really have large type one populations. And they could use a little bit of light called the teachers edition of the textbook, to help them make sure that they're doing the best for patients.

Stacey Simms  28:08

I think that sounds wonderful. I just think, you know, this podcast audience is a little bit different, or I shouldn't, it's a lot different. This is an incredibly well educated audience that is going to get a pump like this, and mess around with it themselves at home and see how much they can change it. In fact, as you know, part of this audience is going to physically try to probably break into the pump and see what they can do with it. So I know you can comment on that you don't have to comment on it. But that's why my hackles went up when you said the endocrinologist can, but I get what you're saying for the vast majority of people with diabetes, the endocrinologist or even their general practitioner, which is different story altogether, is really going to be the guiding hand here. Just another question you mentioned with the 780. The change from, you know waking people up kicking out of auto mode, fewer calibrations, is that really in the works in terms of fewer or no calibrations or that's a hope for a future sensor?

Sean Salmon  28:58

No, that's absolutely in the works for the sensors. So we we have a product in that's complete as clinical trial and other ones very close to doing that. That eliminates or vastly reduces fingerstick calibrations? And then yeah, so it depends on the regulatory claims that we make on that specific device. And then we have two others in the pipeline that absolutely eliminate finger sticks altogether. Now, that doesn't mean that you know, if you get a reading, it doesn't make sense to you that you shouldn't go confirm it, the glucose, the blood glucose, then calibrate No, no perfect sensor. But yeah, our algorithm itself that goes into 770 cuts down by about half the number of requests for finger sticks with the same sensor. And then when we change the sensor, we can, we can largely eliminate that unless there's something that needs to be confirmed, because the reading doesn't make sense.

Stacey Simms  29:53

So is the hope that the 780G would launch with, I hate to compare it to Dexcom but let's just go ahead and do that. Cuz that's what we're all talking about here anyway, obviously, most people who use a Dexcom understand that it's not infallible, you do have to double check, sometimes, you know, you'll get a sensor error when it doesn't understand what the you know what it's getting the information that it's taking in, it'll stop working, that kind of thing. So is the hope to launch the 780G system with a sensor that's comparable to what I just described.

Sean Salmon  30:20

So it's gonna depend on where you are in the world. But the 780 is going to be compatible with past and future sensors. So you know that they may be on different timelines. And we really try to think about this like it's a system to so we've got the pump, we've got the algorithm, we've got that sensor. And the other thing we have is the tubing set and reservoir. And there's another innovation we're bringing that allows you to extend the use of that on label of that tubing set from the typical two to three days. At the seven days. We call that the extended wear infusion said that's also known as clinical trial. And the goal is to have that also compatible then 780G algorithm. So the algorithm that's on that pump, which can have all that connectivity Vantage can work with this current and future pipeline of sensors, and be upgradeable on the infusion set is all sort of in a suite of what we're trying to bring together.

Stacey Simms  31:14

Well, Boy, am I glad you brought that up. Because I have said for years, and my son has been using an insulin pump for I don't know, 13 years now that the inset is the weak link of pumping. And I know, you know, a couple years ago, we were all excited about the BD flow was supposed to be this the latest and greatest, it didn't work out so well. So that went away. Can you tell us a little bit about what you found? When I hear longer? Where insets? I think, Oh, my gosh, you know, we've all been warned about infection and scarring and don't use the same site for that long. What are you finding?

Sean Salmon  31:47

No, it's a really good question. And you know, what is it that's so magical about it? How do you get to extend it? And without getting too much detail to the simple answer is that things that are in insulin to keep it from going bad, the preservatives, if you will, are behind a lot of that sort of site reactions that you get. So we're able to take that stuff out and have just filtered insulin if you will deliver to the site. And that's really the magic behind getting extension of abuse. And you know, we did a study where we, we measured this and about 80% of the study participants were able to get seven days your body is going to react a little differently being who you are. You see that with CGM, right? Some people can wear those things for two weeks, and other people can't. Because their body's more aggressive at attacking that foreign body response, just by comparison, for three days, which was our control arm 70% of people got to three days, right? So we've got a higher proportion of people able to make it seven days, we think it's largely due to getting out those preservatives that are the insulin to keep it fresh.

Stacey Simms  32:50

That's fascinating. It's simple as a filter. I've always thought that yeah,

Sean Salmon  32:54

it's not it's no, it's also your insulin is a very sensitive molecule too sensitive to temperatures, you know, and it's also sensitive to you know, how it's contained in the reservoir. So our rigid reservoir system doesn't like mechanically damage the molecule either. So that's, you know, an advantage that we've always had with our reservoir design, then you add to this, the ability to filter out the preservatives, and you get this extension to where so you can preserve a lot of insulin, use a little more judiciously, and of course produced it. You know, the difficulty of having to change your set every day. Maybe it's a fusion set Sunday, you change it once a week, and maybe same time of changing your your sensor as well. Who knows?

Stacey Simms  33:34

Well, I think that would be pretty amazing to have a longer wear inset. That works. Because a lot of people have trouble as you said, getting to three days. Yes. One of the big questions that came up in with my listeners when I told them I was talking to you, and we've covered most of them. But one of the big questions came up was Medicare, in terms of this technology is great. Will it be covered? Can you speak to that at all?

Sean Salmon  33:53

Which which part of Medicare you asked about? Are you asking about the Well, let's talk Yeah, more of a?

Stacey Simms  33:59

Well, I think the real question is everything. But let's talk about the the system. As you mentioned, you talked about it as a system, the 780 will the system be covered? Or will it be piecemeal?

Sean Salmon  34:09

Yeah. So the rules of Medicare are really around the designation of the sensor, can you make a claim of what's called non adjunctive, meaning that you know, you don't you don't have to confirm the CGM ruling before you dose insulin. So when you're 64 years old, and your pre medic quick care and you're on like a 670 g system today, your commercial insurance pays for the sensors, the tubing sets, the reservoirs, of course, did initial investment in the pump. When you turn 65 and you move to Medicare, you no longer can get the Guardian sensor paid for because we don't have that designation. For Non exempt. They've even though it's clearly driving the pump all day long every day. So we have to get that labeled claim for the sensors for everything to be covered. And that's what we're trying to do right now with the Guardian sensors and of course, the future pipelines. themselves. But like I think it's a, there's a couple different efforts on that. But it is a little bit of an idiosyncratic thing that that exists in Medicare itself, just the way the payment law works. And we're trying to get that changed,

Stacey Simms  35:14

has COVID, delayed studies, submissions, things like that for you, while

Sean Salmon  35:19

at the branch of the Food and Drug Administration that regulates diabetes face is also involved in a lot of things COVID related, including like the in vitro diagnostic testing, and that sort of stuff. So yes, I'd say on the medical reviewer side, in particular, there's been just a difficulty for them to service all the kind of pre market or new devices that are coming through while doing this difficult work of making sure that all the COVID tests and things related to that are done. So yeah, there's been something that has been a little bit challenging. And of course, in the clinical trial environment, we actually had a couple of trials going on during COVID. And some of them have gone pretty well. Honestly, I think people are stuck at home and not willing to participate the trial. It's not been like that. In other parts of Medtronic, we've got a lot of the hospital based studies have been very difficult and highly impacted by understandably, people's fear of going to a hospital for for anything right now is pretty high. So I'd say it's been a mix. Like we've had really good collaborative conversations with FDA making sure that we streamline and make it as simple as possible as we submit new dossiers. But there is really a constraint at that medical reviewer level that's been, you know, difficult for the entire industry.

Stacey Simms  36:35

You've been so generous with your time. I really appreciate it. I just have one more question for you here. And that's about tide pool, about a year ago, maybe more now, Medtronic and tide pool announced that they'd be working together on a, you know, a future interoperable, closed loop. And it would be a separate system from the seven at any update on that.

Sean Salmon  36:55

Yeah, we're worth continuing to work with tidepool. There's a joint steering committee that we participate in. Our goal here is to create a Ace designated pump that runs the tide pool algorithm. But yeah, that collaboration is ongoing. We're working well with them. But I don't really have an update on that.

Stacey Simms  37:13

Well, Sean , I really appreciate it. There's so much going on. Do you know to talk about and thanks for keeping us straight with the numbers and everything else. I hope you come back on and you know, continue to explain all of these developments. But I really appreciate it. Sean , thank you so much for spending so much time with me for sure.

Unknown Speaker  37:28

Thank you, Stacey.

Announcer  37:35

You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms  37:41

We talked about a lot of stuff there. There is a lot more information as always over at Diabetes connections.com. You can learn more on the episode homepage about everything that Sean talked about. I'll link up some stuff to Medtronic into some other studies. I said a couple of weeks ago, there's something about September, October. It's like all summer long. Yeah, we have the ADA and we have the different conferences. But then every year at this time, I feel like oh, it's kind of slow, nothing's happening. And then I get all the tech companies in the fall. So I'm excited to continue to bring you as much information as I can. I have more interviews coming up. We just talked to Dexcom. I'll also be talking to Abbott. I'd love to get Omni pod that folks from Insulet back on here. So we'll we'll see what we can do. But in the weeks to come. definitely let me know if there's particular technology you want to hear more about. I love talking to these companies. It's always fun to get a kind of a peek under the hood. And I like hearing the voices and the stories of the people who are in charge of this stuff. I appreciate them coming on not everybody does you know that but it's great when they can answer your questions. And I love doing that. So let me know if you want to hear from and let me know what you want to know.

All right innovations in just a moment with that once a week basal insulin that's being tested. We'll we'll talk about that. But first diabetes Connections is brought to you by Dexcom. And when you have a toddler diagnosed with type one, you hear rumblings for a long time about the teen years when it hit us full force a little early. I was so glad we had Dexcom you know Benny's insulin needs. I've shared this. They started going way up around age 11. And when I say way up, I know some of you parents out there with little ones think maybe we increased by point two or something like that, because I remember those days Benny's first basal rate was 0.025. That's how much basically got an hour. But by the time between ages 10 and 12, his basal rates doubled. And between 12 and 13, they doubled again. So along with the hormone swings, I really can't imagine managing diabetes during this crazy time. Without the Dexcom continuous glucose monitoring system. We can react more quickly to highs and lows. see trends adjust insulin doses with advice from our endocrinologist. I know using the Dexcom g six has helped improve Benny's A1C and overall health. And by the way, he's almost 16 and those insulin needs have already started going down. This is wild. If your glucose alerts and readings from the G six do not match symptoms or expectations. Use a blood glucose meter To make diabetes treatment decisions to learn more, just go to Diabetes connections.com and click on the Dexcom logo.

Innovations this week, a once weekly, basal insulin. This is something that was announced earlier this summer. I don't know about you, but it's snuck by me It was announced at the ADA Scientific Sessions, Novo Nordisk announced that a once weekly insulin Icodec had performed as well as Lantus in a 26 week trial. Now, this particular study was done with people with type two diabetes. But before you dismiss it, there has already been a trial of people with type one diabetes, and novo expects to submit and get this and hopefully FDA approved for people with type one and type two diabetes, I couldn't find a lot of information about the previous trial with type one, there is another one that completed over the summer, hopefully, they'll release the information on that maybe some of you who are more savvy in the ways of clinical trials can dig it up the

Can you imagine once a week basal insulin, I mean, obviously, the benefits of that would be incredible. And also thinking about it for people who like to go untethered using basal insulin from an injection along with an insulin pump, which is something we did for two years. And even with control iq and you know, more advanced hybrid closed loops. Just talking to Medtronic about there's, I know a few people who like to use untethered with it, who find that there's just something about getting that always constant, steady, basal insulin smooths everything out. And certainly when you get into the enormous elephant doses that Benny was taking for a while, it helped tremendously to take that load off of the pump. I mean, between his weight loss and you come in at a puberty and I know he loves when I talk about this stuff, his insulin needs have come down incredibly, and certainly to the point where we didn't need to stay on untethered, but I think it's fantastic, it's a great option to have and once a week, basal insulin makes that a lot better. So I will keep you posted if I find out more about the type one trial, but is called insulin Icadec.

If you have something for innovations, please let me know this can be a hack that you thought up a tip or trick something with technology or new influence. You can always email me Stacey at Diabetes connections.com.

I mentioned Benny's 504 Review earlier in the show. And that happens later this week. He's also got an endo appointment this week. lots going on. I don't think the endo appointments going to be too exciting, hopefully. But you know, we do check in every quarter. And I think to mix it up, my husband is going to take him this time. Slade rarely goes to the endo usually because he's working in busy and and it's been on me for the last couple of years, which I love to do. I really like catching up with our endocrinologist who's become a friend. But I think I'll let the boys go. And gosh, you know, another reason not to go. I'm looking at making sure my door is closed. So Benny can't hear me. You know, the kid has this permit, and he's gonna be getting his driver's license if he passes in January. And I know Slade will let him drive to Charlotte, which is like a 40 minute drive. So he can do that. I don't need that stress of sitting in the front seat and putting the mom's seat belt right throwing my arm out, which I cannot believe I do. But I've done it with both of my kids. Oh, I remember my mother doing that clear as day. I don't even know if they're doing driving tests here. They haven't been. I know plenty of kids who got their licenses this year, because of COVID. They're not actually giving them a driving test. They're just saying, oh, did you do your hours? Alright, here's your license. And it's a graduated system here in North Carolina. So they can't get their afternoons they can't drive at night until they take an actual driving test. I don't mind goodness. All right. So let's keep you posted and updated on next week. We'll see how much he lets me share.

Thank you so much to my editor John Bukenas from audio editing solutions. Thank you so much for listening. Don't forget if you want the free audio book, email me Stacey at Diabetes connections.com subject line audio book, and the first two will get that promo code. Thanks so much for listening. I'll see you back here next week. Until then, be kind to yourself.

Benny  44:03

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

Dexcom's CEO Kevin Sayer checks in with Stacey to answer your questions. He talks about their new pharmacy benefit for Veterans and why Dexcom would love to move everyone off of durable medical. Plus, a follow up on their hospital program we first discussed this spring, adhesive issues with the G6 and looking ahead to the G7.

Stacey also takes some time to talk about the interview process & which companies we feature on this show.

There is a video of this interview - you can watch it here.

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Episode Transcription

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed autoinjector 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

Welcome to a bonus episode of Diabetes Connections. I'm so glad to have you along for this. When we talk to the technology companies, especially Dexcom, we get a whole bunch of new listeners. So if this is your first episode, welcome, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. Week after week, I talked to lots of people in the community sharing stories from athletes and celebrities and tech companies and regular people just living with diabetes. My son lives with type one. He was diagnosed almost 14 years ago when he was a toddler. And we've been doing the show for more than five years now usually release episodes on a weekly basis, we throw in some bonus episodes when the time is right. And this is one of those times

Dexcom had some interesting information to share. So I jumped on zoom with the CEO with Kevin Sayer. We talked about the new pharmacy benefit for the Veterans Administration. A follow up on their hospital program we first discussed this past spring, I answered your questions about adhesive changes for the G6. And looking ahead to the G7. I'm going to come back at the end and do some inside baseball stuff about the interview process. And about which companies I feature on the show why we feature them when we talk to them? What kind of questions I asked that sort of thing. I got some good questions about that in the Facebook group that I would really like to address. So I will do that at the end.

As you heard just a moment ago. Dexcom is a sponsor of the show. As longtime listeners know I say this every time we talk to a sponsor, but it's really important to get this out there. I do not allow sponsors to dictate the content. So they will not tell me what to say during an interview. They will not ask me to edit that's not part of the deal. They are a sponsor. We believe in them, they get a commercial, we like the product. It doesn't mean we don't ask questions. And we probably speak to Dexcom the most frequently. But I like to point this out every time we talk to sorry if you get tired of hearing it. But those disclosures are important.

You should also know there is a video version of this interview was a zoom interview, we taped it, it's on our YouTube channel Diabetes Connections, and I shared it on social as well. Toward the end, my son Benny stops by and we make reference to some appearance issues. All you really need to know if you don't want to watch it you just want to listen here is that his hair is now dyed. It's this crazy bleached blonde, and he's wearing a giant purple Snuggie. He makes quite the impression.

All right, let us get to what is important here. And here is my interview with Dexcom Kevin Sayer:

Different kind of way to tape an episode of Diabetes Connections, but we're going to give it a try. And joining me is the CEO of Dexcom, Kevin Sayer. Kevin, thanks for doing this. I appreciate it.

Kevin Sayer  3:01

Oh, you're welcome, Stacey, good to talk to you again.

Stacey Simms  3:04

So normally this time of year, you'd be in Europe for a EASD. That conferences is happening. But virtually,

Kevin Sayer  3:11

it was happening virtually. It's not quite the same. But I get notes from everybody who's listening to the presentations, gathering papers to find out what went on during the day. So are what we're trying, everybody's trying to do different things.

Stacey Simms  3:25

Well, I have a laundry list as usual to go through what is Dexcom presenting anything at this conference, because there are a few

Kevin Sayer  3:31

papers, supporting the strength of CGM and treating diabetes. Some of the results in the type two studies that have happened recently and some of the results and some of the studies with the senior community and things like that. Nothing earth shattering, but again, all supporting CGM and how well it works and helping people take care of their diabetes. So you know, a good show for us. Just typical.

Stacey Simms  3:56

Well, we've got a lot to cover just today as our speaking and news release came out about a new agreement with University of Virginia. And this is for as you're watching or listening University of Virginia as a bit of a history with Dexcom in terms of the place where type zero was developed. So what is this agreement all about?

Kevin Sayer  4:17

Well, and you're correct, yeah, we've had a relationship with the various teams in Charlottesville for quite some time, the type zero group that we actually acquired in 2018, or the algorithm for the control IQ system, and then control steady resided, we felt that was a tremendous asset going forward, not only in developing automated insulin delivery technology, but possibly for developing decision support tools. For those who don't want an automated insulin delivery system over time. In conjunction with that acquisition. You've got also always really smart people to still stay at University of Virginia and do Diabetes Research and they're very access to clinical trials, clinical networks, all the other things they've done.

We've had an informal relationship with them for a long time and we discuss could you guys help us with this or that and as our companies became more mature, and they got more involved in diabetes research that we felt was important to fund the things we were asking for, and give them an opportunity to do some good work on our behalf. So over the next five years, we'll target some leading edge new diabetes research project and use those brilliant minds to work on behalf of Dexcom, and ultimately, on behalf of our patients,

Stacey Simms:

is there anything specific that you can tell us?

Kevin Sayer:

first, you know, we have current generation, automated and some delivery algorithms out there will certainly work on next generations, and ones that will just fine tune what we've already learned and, and do better. On top of that, I think you'll see us work for decision support, like I spoke about earlier, what tools can we offer somebody that is treating their diabetes and using insulin that are meaningful, and not getting in a way all the time? So what constructive? Can we do there and predict now that we have all this data from all of our patients, because the data has been uploaded from the phone, we think that analytics capabilities of the team at UVA can certainly go through this and find a lot of things that could be helpful for us to offer to our patients. And you know, as we look at even over time, they develop simulators and all sorts of things and looking at diabetes data that we think it'd be applicable for the future with respect to working in the hospital, or gestational diabetes, even the type two non insulin take taking patients. So now that we signed this agreement, it's up to us and VBA team at the type zero team to figure out and say, Okay, here's the things we want to work on. And we're we're just excited to have the agreement in place.

Stacey Simms  6:39

For people who are hearing things like we have all the data from the phones for the first time you and I've talked about this before. But can you talk a little bit about Dexcoms use of data. In other words, you know, My son has used Dexcom for seven years now. So you guys know everything about him. But you don't really know about him? Well, blinded, right?

Kevin Sayer  6:57

We know that they're from transmitter 1765 G, here's the glucose signals that we received. And you can look at what is going on with your son. And we actually have data regarding how it performs as well to come to the app so we can service it. And we can use that information to make our product better. But we don't share anything with anybody without a patient opting in and saying, I would like to share my data with x, or I would like to share my data with the Southern Company. There's no data sharing, there's it's absolutely kept very confidential. we comply with all HIPAA requirements and keep things very buttoned up.

Stacey Simms  7:34

All right, again, like I said, there's a laundry list here. So the next thing I wanted to ask you about, and this is wonderful news for veterans that Dexcom G6 available at VA pharmacies, at no cost, it will, it's covered by the VA

Kevin Sayer  7:47

covered by the VA. You know, in the past, as many of your listeners and followers know, we've been trying to move away from durable medical equipment. As far as the coverage vehicle for our product, one of the things has been one of our biggest roadblocks is getting access to this product where people can get it easily and affordably. And within their normal course of their work. Rather than filling out a bunch of paperwork and having a bunch of Doctor notes and medical records and blood glucose logs and everything. And this coverage by the VA is going to make it accessible to veterans as long as they are on intensive insulin therapy type one and type two diabetes as a Pharmacy Benefits. So they would pick it up where they would typically pick up their drugs and and no copay. So this is a wonderful improvement for a group that really is troubled with diabetes, I think there's something like four times more incidence of diabetes in this group than the general population. So we really believe we can have a good impact here for this group of patients.

Stacey Simms  8:46

You know, again, I hate to ask stuff about our personal experience, because it isn't applicable to everybody. But I will say when our insurance switch to pharmacy Dexcom It is so much easier for whatever reason than going through Durable Medical, I don't know if it's the billing or just they're more efficient. I am now on a new insurance and in fact a durable medical so I'm not Yeah, thanks a lot. I got spoiled for a long time. But is is that the idea then to try to switch as many people as possible and as many insurers as possible to pharmacy and then my guess my question would be well, why? What's in it for you guys?

Kevin Sayer  9:20

Why is it good? for us is it's easier if we are going to have this therapy be used by all as one users and then later even type two knives when using patients. One of the keys is making it accessible and to meet patients where they are. It is not during the normal course of operations for anybody to go through the durable medical equipment process not only the patients but their caregivers. You know, endocrinologists are used to working with all the paperwork associated with durable medical equipment. While it's a hassle they understand it. Many people with diabetes using insulin don't see endocrinologist and in fact A good friend of my wife's she knew from childhood came and stopped by business not long ago. He's a year younger than me. He has type two diabetes, he went to his doctor and he said, I I'd like index calm, I can do really well with that. And his doctors and internist general practitioner, he goes, Yeah, I've heard the paperwork on that softball, I'm not going to do it. And that was the answer that he got. And that's not a good answer ever.

So the easier we can make it on everybody in the network, then the easier it is for patients to be compliant and easier to get patients on a system. And so we pushed very hard we have over 65% of lives in the US, covered lives and commercial insurance can go to the pharmacy now, but not all of them do. Most insurers insist that we have dual past durable medical equipment and the pharmacy but the most of our new patients and the majority of the new patients going on to Dexcom now are going through that channel. So we made a lot of progress. Would the advice be as people are watching or listening to if you are currently Durable Medical, call your insurer and see if it has changed. Or you can even call Dexcom or even call your insurance? See, we went again, when we get a new patient into our system, we try and determine if it's pharmacy. First, we try to determine where they can go and give them the path of least resistance to get their sensors, transmitters and everything else. So we do run a benefits check oftentimes for new patients, but not for the existing ones. They're buying product.

Stacey Simms  11:30

Well, I just went through that whole process. I won't bore you with the details. We have limited time.

Kevin Sayer  11:35

I'm sorry.

Stacey Simms  11:36

Thank you very much. I appreciate it. Your condolences are welcome. But it leads me we were talking about the VA and G6. This is a question you know, I'm going to jump to my listeners. We have lots of questions. And one that came up everyone of course is especially our listeners are so well educated, they're so up technically on everything. They're already waiting for the G7. I'm not even sure they want me to ask you about the G6 anymore. But the question that came up, and I think it applies to the VA as well as will Medicare cover the G7? Or should we anticipate issues with production? And all that that happened last time?

Kevin Sayer  12:07

know that? You know what? That's a very fair question. So I don't feel at all beat up by that we, we got an approval on G6 months sooner than we'd planned. We knew how much better it was in G5, we were planning on launching a system in the fall and instead lost it in the spring when we weren't ready. And we literally spent a year and a half trying to catch up. We have enough capacity now to build enough G6es to handle what we need very comfortably. And the factory looks so different than it was before. I mean, everything is literally automated robotic arms put every single thing together. And off we go. We are building that same infrastructure with G7 long before its approval. And the equipment we bought for G6 is not going to be applicable to G7. So we're starting over. But we are getting automated lines up and running for G7. Now we have equipment scheduled to come in over the course of the year. And in all fairness, we're not going to do that, again, we're not going to watch it for a group of people because we only have this much capacity, we're gonna when we go, we've got to be ready to roll the thing out, we will continue to produce the six because there will be use cases and geographies, then we won't flip to G7 immediately based upon our planning and our capacity, but we are going to we want to be ready to slip everything immediately. That's our goal. Right?

Stacey Simms  13:24

So the you're not anticipating a production issue. But in terms of and again, I know it's complicated when you're working with CMS. And when you're working with the VA, there's no reason to expect that there would be issues with those groups. Nope. Separate

Kevin Sayer  13:37

notion. We have been structuring our contracts in a matter whereby the G 6, 7 conversion, the simple what was difficult in the past are the durable components, the transmitter and the receiver, which he said and there's no transmitter everything's in the sensor, so we don't have to deal with that much anymore. And, and yet receivers, we will continue to sell them but it's getting much simpler, the same rules will be applicable. So we do not believe there'll be a big problem going from one sensor to the other reimbursement wise.

Stacey Simms  14:10

All right, so let's get to these questions. And some of these guys are very technical. So now I'm putting my glasses. Okay. I know you can't I don't know if I want to get it right. Okay, so Chris wants to know, what about plans for integrating data with reporting systems their partners use, for example, I have CGM going to my pump and the Dexcom app. Tandem has released t Connect. And the only reason that he's using the Dexcom app right now is the clarity, goal tracker. Any any ideas about further integration with the T Connect especially because people are going to start using that from their phones maybe next year.

Kevin Sayer  14:46

Yeah, we work with all of our partners, we were what we would like nothing more than to have all the data log into our clarity system to give patients that option. The the issue we have with it is we're all still Companies, you know, some companies believe this data is theirs, and they, they need it proprietarily it's been slow for us, quite honestly, to get data from all the other pump companies into our clarity system. We do have agreements in place where we're working on that we have that with Insulet. We're talking with Tandem about that. Now we're talking with other companies about it, we reciprocally are more than willing to give our data to be displayed into their app and their education systems. So we do share data with those who want it we have API's to whereby they can pull the data and display it if the patient gives them permission. And our criteria for accepting companies to take the data is not extremely difficult. If we view the something our patients want and need. We absolutely let them pull it through the API's. I think over time, you'll see us continue to share data and hopefully others will give us theirs. It isn't simple. Everybody has their own opinions.

Stacey Simms  15:53

Well, and that's another question that I've received in the past was kind of the API. I may not even be using this correct verbiage here, well, they remain open. Because there are lots of people who've developed secondary apps, some are fun, some are very useful to people. And I know that there has been a lot about open source in the community

Kevin Sayer  16:12

know our API interfaces are still there's a process one goes through to get that information. But by and large I there's a lot, I don't have a number 60. But I know it's certainly more than 50 could be over 100 companies who pull data from our API's into their system. And we have kept that relatively open and shared. Do I think you'll remain open? Yes? Will there be times when we say no? Sure. You always say no to something. So for example, if somebody says I want to dam the API, so I can compare you to all your competitors and say Dexcom isn't any good look at the other guys. giving you access to our API's, we don't we don't need that. We do view the data as the patients but we also view the infrastructure we build and the money we spent as investment we make for our shareholders. So it is a fine line to walk and we'll continue to look at it. Ultimately, we hope to have a live API and or whereby if you're running the Dexcom, Apple want the live data on your app, we can offer that option as well as certain partners. And you know, that's on fire with the FDA, we'd like to get approved relatively soon. So once that that's out there, we'll pick some companies and do it. But we also want it to be up to Dexcom standards. So don't we don't want to offer data to companies that are going to make horrible looking apps and great experience. We could tarnish our brand. So it's a balancing act.

Stacey Simms  17:33

All right. I may regret this. And we may I may run out of time, we'll have to see. Do you have a question? No, you want to say hi, my son has come in. And I'm on headphones now. So if you want to say hi, for real, he's just beautifully dressed for the occasion. And you say hello, real quick. This is the CEO of Dexcom you're making a wonderful impression

Kevin Sayer  17:51

Hey, hey, how are you?

Benny:

I'm good. How are you? I'm fine.

Kevin Sayer:

You got to ask me at least one question.

Stacey Simms  18:00

You’ve had the Dexcom since you were nine years old, really? No questions.

Kevin Sayer  18:03

What's your favorite Dexcom story that you could share with me

Benny:

Oh, my friend. And I were like messing around one time and we horseplay and he ripped the Dexcom off on accident but like just the the transmitter and like the the patch stayed on. So like the middle of it ripped off. But the the patch around it stayed on. And he freaked out and I like pretended to like die.

Kevin Sayer  18:31

That's awesome. Oh, wonderful. Thank you for contributing. Hey, it's nice to see you. Nice to see you. Mom's actually pretty cool. My mom would never let me grow my hair like that. So I'm gonna give your mom

Kevin Sayer  18:45

your mom, your cool.

Benny:

The CEO of Dexcom said you're cool mine. You have to use that.

Stacey Simms  18:50

Yeah. Yeah. I think quarantines gotten all of us. But I love you, sweetheart. I didn't mean it. That's what happens when you have a kid who takes care of everything he's supposed to take care of you let him wear a purple dinosaur snuggie, let his hair get crazy. You pick your battles. I appreciate that was very nice of you. (To Benny) Oh, see? We'll see if I don't cut any of it out. All right. Let me get back to the questions here.

All righty. Question about compression lows. Somebody asked me if they're if you are addressing this, I assume this will be as much of an issue with g7. But you know, you'll lean on it

Kevin Sayer: We don’t think that it will. That will be determined when we have more real world use than what we've had in clinical studies. Right now. We've got a number of of thoughts and technologies we're considering for compression. I can't give away all of it. But it is something we're working on addressing over time. Again, we have some ideas, I don't know that you can ever eliminate it because you're going to lean on it. And that's going to happen. We've looked at alternative platforms. We've looked at other technologies we've looked at longer insertion depth, shorter insertion depth, what is what are all these things do and some of the things that you think might fix it actually make it worse. So we'll look at it which Seven, you know, we are going to have an arm indication in addition to the abdomen with G7 running on both and for young children, the back of the box as well. So maybe there might be less patients on the arm for other patients, there might be more, but we we are looking at it, we do have some technology ideas that I won't give away, that might be able to fix it. So give us a little while and we'll see.

Stacey Simms  20:21

I’m just curious when you do these things, please tell me that you've got guys in the lab like taking naps laying on it. You know, it's not just a robotic simulation?

Kevin Sayer  20:30

Absolutely do we actually make go away on it for half an hour? Let's see what happens. We we do that, particularly at our feasibility studies, go away on us and see what we learn.

Stacey Simms  20:41

Tim wants to know, any plans for every minute data instead of just every five?

Kevin Sayer  20:47

I guess my question with that, and we've looked at this for years, what problem are you solving?

Kevin Sayer  20:53

is passing it along?

Kevin Sayer  20:54

When my no I'm so I'm gonna ask you the question I asked my team. So I'm letting your friend Tim be are the guys that work with me here? What problem you're solving by reading every minute? Well, you are solving a major problem, we would do that. And we've looked at that. Certainly you can possibly fine tune the algorithm better by recording video every minute or by transmitting every minute. Are you fixing anything for the patient? If we determined that that was a better experience for patient, we would absolutely address it. But right now, our patients are comfortable with five minutes. We haven't gone below that if you have an alert, you get it on a timely basis. Our alerts are very accurate in that timeframe. And so we're comfortable where we are we continue to research things like that. But our market research indicates that five minutes is absolutely fine for our patients right now.

Stacey Simms  21:44

I will devil's advocate by saying the response was from this is not Tim's case, but another person to chime in and say for very young children. They thought it would be helpful as someone whose child went ages two to nine with no CGM, I had don't have that perspective.

Kevin Sayer  21:58

Well, they're highly variable. And that could be a marker where it would be would be very helpful. Although that I learned every time we talk, Stacey

Stacey Simms  22:06

Well, you're more than welcome to use the Facebook group as a focus group anytime you'd like. We have some people you met one of them who thinks you know, looking at the Dexcom only when an alert is okay. And you have other people who have gone around the system because they don't like the two hour warm up. So some people can't get enough data. And some people who are 15 don't need any data. Yeah, there's a happy medium in there somewhere. I'm sure. I know we're gonna be running out of time. But I do have to ask the adhesive. It just seems that this year, there were changes. We've talked about it before. And while for some people it is getting better for some people, it is not. I know you're working on it.

Kevin Sayer  22:40

So let me walk you through that. We did change our adhesive. So let me be clear where and we talked about this before, we had what we felt was too many sensors fall off before the 10 days were up. And you know, if I bought a sensor, and it fell off today, and I want to I want to replace, and we replace a lot of sensors, we looked and studied a number of adhesives and arrived in one way arrived at based on numerous studies, we've not seen the irritation in our our trials that we've seen in the field. And in all fairness, the number of sensors falling off is decreased dramatically. And it is there many more sensors not falling off, and there are complaints about etc. So the trade off business wise, has been good, it has not been good for those patients who have that issue. We do have on the website, clinically proven alternatives and things that you can do to try and minimize that. There's anti allergy things you can put on your skin. There's a tape you can put on first and our tape over the top. We have studied the adhesive and the chemical composition of the adhesive a great length, we are doing some trials, just some in house studies to try some new patches to see if that helps. We've identified literally two agents that may be causing this. If we take those out, do we still have the same sticking power that we do now? So we'll look at it and if we can find a way to revise it, we will

Stacey Simms  24:06

when we talk to a couple of months ago, you were announcing CGM in hospitals. A lot of this was centered around COVID. Hoping to make it safer in hospitals. There's some newer information on that.

Kevin Sayer  24:18

How's it going? It has gone extremely well. You know, we've had over 200 hospitals reach out wanting CGM and we're in the process of getting it to tell them that eventually want to buy it. We're in over 100 now, we've now set up a registry so we can gather data from these patients. This was such for lack of a better words of fire drill, we started because there were so many people in hospitals, so many people so sick that we had to get it out there. And we literally learned new things every day. For example, the receiver really doesn't work because it's still there with the patient. They they needed phones. You don't want any individual nurses or caregivers phone, we had to give phones to the hospitals and we had to get through the IT systems and hospitals. Now that we have a pretty good idea how this works, we're creating a registry whereby we can gather data on these patients, you have to consent for us to gather your data, although you want to gather data about their healthcare experience in a hospital that came in with COVID, what drugs are they on? How are they treated, if they leave the hospital sooner or later, we want to gather that data. So we can use that to give us a basis later, at some point in time to go to the FDA and say, this will be a great hospital product.

Stacey Simms  25:26

This has nothing to do with hospitals, but it just occurred to me, there are a lot of diabetes camps over the last few years that have talked about maybe we could get every kid's Dexcom and put them on a screen in the infirmary or, you know, a generalized or, you know, a place where we could look at something like that. I'm curious. I don't know if that sounds like something that would even be possible.

Kevin Sayer  25:46

That's exactly what the hospital systems would want. They would want although CGM is going to one place, you know, we have to use the tools that we've got. So they would put sensors on patients, we'd hang phones next to them. And if they wanted to share follow on the hall on iPads or computers, they could and that was, that was literally all we could do. We got the clarity to whereby it could accept real time data. So we got that change as well to make this easier. But the right answer at the hospital, one of our learnings is we need that day to go to the place where it best impacts the workflows of the caregivers. And that would be a centralized app where you could watch numerous people at the same time.

Stacey Simms  26:25

Well, if you want a pilot camp, I could probably find several

Kevin Sayer  26:29

time we can try that. Maybe

Stacey Simms  26:31

before I let you go, I always have to nag you about follow, because Benny is now very responsible doing most of his care. And yet, when I look at the follow app, I would love to note transmitters dying, change this do that any plans to update follow to give a little bit more

Kevin Sayer  26:50

where we writing follow as, as I speak, I don't have released a party, but we are and put more of those same features in it. All right,

Stacey Simms  26:59

well, we'll circle back on that.

Kevin Sayer  27:01

We'll circle back. And I'm sure you'll have requests on follow even when we release the new one. And that's okay. I'm free is very clear, though. And your follow comment is perfect. This truly is becoming an experience, a consumer experience side product, what can we do to make this most engaging for you For you follow would be to have all that data. And I'm confident we can create that experience at some point in time, we need to find the experience that keeps people engaged and keeps them the safest. You know, we took a shot in the dark boy for started because nobody ever done this before. And here's what we can get done. And here's what we'll get out. I think over the next several years, what you'll see what next comments will create experiences that you can create more like your other apps whereby you can click on File, do you want the transmitted information? Yeah. Do you want that? No. Do you want in and literally create a menu and tiles and stuff similar to other software experiences that you have? So that you know that's a longer term goal? We can talk about that on another show.

Stacey Simms  27:57

I really appreciate it. I mean, Kevin, you've been accessible for many years to this podcast, and always answering our questions, whether they're the answers that people are hoping for or not, you're really upfront in a way that not every company is. And I do appreciate that. So thank you so much for spending time with me as usual. circle back around, we'll get Benny a haircut. And we'll talk soon.

Kevin Sayer  28:17

He can do whatever he wants. But yeah, thanks for having us again.

Stacey Simms:

You're killing me.

Announcer  28:31

You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms  28:36

Lots more information about Dexcom. And some of the other things that Kevin talked about at Diabetes connections.com. And as always, there is a transcript. We've been doing that for every episode in 2020. So if you want to share this with somebody who maybe doesn't want to listen would prefer to read or if that's you, and you're thinking, I want to go back and read all the episodes this year, you can do that, go to Diabetes connections.com. And click on any of the episodes from this year.

I mentioned at the beginning of the show that I would share a little bit of information about how I pick the guests book the guests and ask the questions. This came up in the Diabetes Connections Facebook group, it is Diabetes Connections of the group. I think it's a really good and fair question. And it came up because I posted Hey, Dexcom has asked if they can come on and talk about I believe it was the VA program and the hospital update. Do you have any questions for them? And a listener said if they're telling you what they want to talk about? Isn't that an announcement and not an interview?

Great question. I've been in broadcast journalism since I was 19 years old. And almost every time unless you're enterprising a story unless you're coming up with an idea and following it through. What happens is they will send a news release to you saying, here's what we want to talk about. Here's our big news. Here's what we want to announce. We are making the people available. And then you email back and say, great, I'm going to also ask about other questions. And if you don't agree to that, I'm not doing the interview. Sometimes you have to agree sometimes if you're going to get a particular kind of guest You know, everybody has their own guidelines for this. They make their own decisions for this. I don't think once on the podcast that I've had to do that. And that would be kind of silly. And I would certainly tell you if that was the case, you know, no one has ever said to me, You cannot ask about this.

I do give. And again, this is a little bit more inside information. I do give when I talk to the like, the real life people, when I talk to ordinary people living with diabetes, I tell them off air, hey, if something comes up, that's too personal. Just let me know. And we'll change direction. We won't ask about that. I don't believe I've ever had someone tell me No, I don't want to talk about that. But you know, you understand if I'm talking to just off the top of my head years ago, we talked to this great guy, he has type one, he owns an ice cream shop, his daughter has type one as well, they had a really interesting and kind of cute story. If I get too personal with him, if I started asking personal questions about his daughter, who was a young girl, and he may not want to share everything about their diabetes routine, or their school routine. I mean, we can think of anything he wouldn't want to share, that doesn't really matter to the issues at hand that I'm talking about with him that we're hoping to learn from him. But I don't do that. When I talk to the technology companies or the insulin companies or you know, leaders in our community when you have pressing questions. They don't have to answer the question. But I have to ask the question, and I don't edit that out.

In terms of who comes on the show. I regularly email when there's something in the news. Certainly, all the technology companies, if you have a question for you know, somebody, I'll fire it off to them. I'll say, will you come on. And you know what, I don't hear back from a lot of them. I have been trying to get Abbott to come on the show. Since the middle of the summer. I think we're gonna do it soon. But when Libre2 was approved, I tried to get them to come on. I think Libre3, they're coming on. Omnipod has told me no, we don't have anything to talk about right now. So we don't want to come back on the show right now. And there's nothing really wrong with that. It's frustrating for me, but I do reach out. And I try to get them on as much as I can. So you've let me know, I could do a tech diabetes podcast every week, ignore everything else, and still do great. I don't want to do that. I like talking to the into the wide variety of people that we do. But trust me, I know, they're popular episodes. And I try to get everybody on as much as I can. As I'm ticking off the names, I'm realizing I have to follow up with Tandem. We talked this summer about doing a second episode about best practices with control IQ. And we need to follow up on that as well. So I'm not trying to single anybody out and say they're the bad guys. It's just a matter of following up.

And if you don't know, and this is not an excuse, but just you know, again, as I'm just telling you everything here, this podcast is just me, I do have an editor who's wonderful. I don't have a producer, I don't even have an intern right now. It's just me trying to do everything I do and run other parts of my business as well. And you know, be a mom and do all those cool things. So no excuses. It's wonderful. I love doing it. But I think it's important to be open and honest about the process. I also do know there are groups that will not come on this show, because I asked tough questions. I mean, I think I'm nice. But it has gotten back to me that there are other outlets that are friendlier. There are people that will stick to a list of questions that will blur the line between sponsorship and content. And that's not what we do here. And I can't pretend otherwise.

Alright, if you have any other questions, let me know. I'm happy to answer them Stacey at Diabetes connections.com. I hope all of that made sense. I hope it was interesting to you. I think it's important information. Thank you so much to my editor John Bukenas from audio editing solutions and thank you so much for listening. We will be back in just a couple of days. Tuesday is our regular release day and hey, we have a new episode with Medtronic coming up. We went through all of the recent approvals what’s up next, what's up with their purchase of companion medical the makers of the in pen. So lots of info coming up in that episode, which will be released on Tuesday. Until then, I'm Stacey Simms and be kind to yourself.

Benny  33:54

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

Transcribed by https://otter.ai

There's new help for doctors who want to treat the person with diabetes and not feel overwhelmed with data. The people at DreaMed Diabetes are behind the brains of the Medtronic 780G system, but they're hoping to help thousands of people who may never use an insulin pump by making diabetes data a lot easier for doctors to use. This week, CEO and Founder Eran Atlas explains their Advisor Pro system to Stacey.

Study in Nature Medicine about DreaMed Diabetes 

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In TMSG a big award for a doctor you all may know better as an Amazing Racer and I learn the word Soccerista.

Read about Emerson in her own words here 

In Innovations – women and diabetes tech design. Read the DiabetesMine Article here

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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 (beta transcription - computer only)

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke. hypopen, the first premix autoinjector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

Announcer  0:23

This is Diabetes Connections with Stacey Simms.

Stacey Simms  0:28

This week, there is so much data when it comes to diabetes that even your doctor would like an easier way to interpret numbers and make dosing recommendations. A new first of its kind technology called DreaMed may help

Eran Atlas  0:43

with the use of your system. I can stop being a technician I can learn to being a mathematical or an engineer, I learned how to be a physician and I wanted to continue to go and practice medicine. I don't want to go and practice engineering.

Stacey Simms  0:55

That's DreaMed co founder and CEO Eran Atlas, talking about the reaction he's getting from people who use their system will explain what it's all about and how it could help

in Tell me something good. A big award for a doctor you all may know better as an amazing racer, and I learned the word soccerista.

innovations. Let's talk about women and diabetes tech design.

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 Diabetes Connections. I'm so glad to have you along. I'm your host, Stacey Simms, we aim to educate and inspire about type 1 diabetes by sharing stories of connection, as well as stories of technology. And that's what I'm talking about this week.

And I went into this episode, I gotta tell you sort of thinking it would be one thing, because I know many of you are very familiar with the technology and these companies. DreaMed is behind the algorithm that's inside the Medtronic 780 G, which was just approved in the US. And we actually are talking to Medtronic and our very next episode about that many other things. But the agreement with Medtronic and DreaMed was it was done several years ago. And DreaMed while I'm sure very proud of that algorithm, they've moved forward, they moved on they want to talk about something else. It was very interesting for me to go through this interview, and I hope you enjoy it as well,

for more of the mundane, less technology and more basic, how much more basic can you get with diabetes and insulin? I'll give a quick update at the very end of the show. I had mentioned in a previous show, we had some insurance changes, a bunch of you wants to know how that was going. Hey, yay, insurance changes are always fun. So I will talk more in detail about that at the end of the show. But in terms of insulin, yeah, we're switching types. Don't you love that? We had been on novolog for many years. And then when Benny was I want to say about eight or nine. We switched insurance and they switched us to human log and we have been on that ever since he's 15 and I guess it's time to go back to no vlog. So I'll talk more about that at the end of the show. Luckily, we don't have any issues or haven't had so far I know a lot of people do. Fingers crossed. So yeah, insurance update and more at the end of the show. All right. Interview with the CEO of DreaMed in just a moment.

But first diabetes Connections is brought to you by One Drop. One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device you've seen this. It is sleek, compact, seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription, you get unlimited test strips and lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more.

My guest this week is the co founder and CEO of DreaMed and is really company with the slogan we treat the data you treat the person Eran Atlas talked to me about everything from their partnership with Medtronic. As I said they develop the algorithm that's inside the newly approved 780 G to their newer technology. And this is all about helping doctors better interpret the data they're getting from CGM and pumps. He mentioned a brand new study on this, comparing their algorithm very favorably to outcomes from Yale and Barbara Davis diabetes centers. And I will link that up in the show notes at Diabetes connections.com. I learned a lot from this conversation. I really hope you enjoy it as well. Here's my talk with Eran Atlas of DreaMed.

Eran, thank you so much for joining me. I'm excited to learn more about this. Thanks for coming on.

Eran Atlas  4:49

Thank you very much for having me.

Stacey Simms  4:50

All right. Tell me just generally, what is DreaMed What does this mean for the diabetes community?

Eran Atlas  4:56

Well, you know, for a certain amount of years A lot of effort has been invested on, let's get more accurate glucose measurements, let's get more continuous glucose measurements, let's get those glucose measurements and insulin measurements being connected. And everybody told us that if we will have more data, more accurate data, more accessible data, all the problems about managing people with diabetes will be solved, right, because the patient will be more knowledgeable, the providers will be more knowledgeable, will have the tools to get into a better decision.

Now DreaMed started as a technology team within one of the biggest Institute's that treat people with diabetes, Type One Diabetes here in Israel. And what we saw there is that data is not all and and sometimes in order to make this analogy, these logic thinking between data and decisions, there is a lot of gap that you need to jump in order to make that move. You need to be experience, you need to know what is important, what's not important, and you need to be able to make the right decision in the right time for the right patient. So what dreamed is taking on is we would like to take the responsibility of allowing providers and patients to make better decisions about insulin dosing.

When we started in 2007, the Holy Grail was okay, let's try to develop these automated insulin delivery algorithm that will make these decisions in real time. And we managed to do a prototype and we published these results as were the first publication in New England Journal of Medicine. And finally, after didn't several clinical trials send people home, we were the first group in the world that sent people home with automated insulin delivery, we licensed that to Medtronic diabetes. But the cohort of people that are going to be using are currently being using automated insulin deliveries pretty small depend on the amount of people with diabetes type one type two that needs to make decisions about insulin. So what dreamed is now focusing is on developing those and commercializing those algorithms that will be able to take all the vast amount of data that's out there, and it can be accessible from cloud to cloud, mobile and everything. And how do we get into the most accurate, personalized decision about how much insulin a specific person with diabetes need to infuse? Not just in terms of real time, but more about looking on the treatment plan? How to optimize carb ratios? How to optimize basal treatment, how to optimize insulin sensitivity factor? What is the difference between a patient on an insulin pump to a patient that is using multiple daily injections based on only different kinds of types of injection regimen? That's what DreaMed right now to do. So we would like to make sure that we will treat the data. So a person with diabetes can continue to live in a provider can start dealing with the person that is in front of them and not just looking into the computer, making himself a technician with numbers and decide what to do.

Stacey Simms  8:04

you have heard the podcast. So you know, I'm easily overwhelmed by data and information. I listened to everything you said. And here and I'm trying and here's what I heard. We want to make life easier for you. There's too much information that comes your way even with accurate CGM. Even with automated insulin delivery, there's so much data and information that unless you are a numbers person, you know, you may not be able to crunch it yourself. And I know you, you mentioned already a lot more down the road. But if I could focus on that the automated insulin for just a moment and come back to some of the other things. Can you just tell me as I'm listening and please correct me if I'm wrong, Vinnie, my son is using control IQ with the algorithm that's inside the Tandem pump using partnering with Dexcom. Is this sort of that? Is that the first step that you're talking about when you talked about automated insulin? Is it the algorithm that controls the pump in the CGM together?

Eran Atlas  8:56

Correct. We started in 2007. Building such an algorithm at the time we called him the medical doctor, the MD logic artificial pancreas. And the idea of what is different between the algorithm that we developed back then and the one that you have right now in control IQ, is how do you make these real time decision about how much insulin to infuse and, and while control IQ, as you may know, is using MPC technique, a Model Predictive Control, and you have that model of Medtronic that uses a different kind of type of control. It's coming from the engineering world, we were strong in understanding how physician analyze data and what we did is we took a technology called fuzzy logic, and I thought you know what fuzzy logic is but I'm sure you have it in your washing machine, and you have it in trains in China and everything. And the idea behind fuzzy logic is that you know why the world is not one and zero black and why there has to be a mathematical way to make decisions based on gray areas. And it's pretty much the way that we're thinking as a person.

So, we took his the way that physicians analyze data, make a decision and automated using dispatches fuzzy logic. And we develop these automated insulin delivery algorithm. And we tested it and when he got the the ability to communicate with Medtronic pumps, and now, we have our some part of our algorithm is going is inside the Medtronic 780G that they announced that they got to see mark for that in June DC or in there, I'm sure that they're going after that the FDA, the main difference between what we did and what happened in control IQ and Medtronic 670 G, is the fact that we were the first that play with the changing automatically both the basal and bolus. And we have the ability to predict glucose into the future and dose insulin based on the predicted glucose. Some of the elements that we have, you have also in control IQ. And I noticed Ctrl Q is working pretty well. But one of the things that we had in that time is the understanding that there's a lot of sensitivities off the patient that these AI D algorithm will need to use. So for example, when you are using your control IQ, you still need to go through your meals, right? So you need to optimize your carb ratios. And some of the safety limits are still dependent upon the insulin sensitivity factor off the pump or the open loop basal rate of the pump. So the algorithm is like riding on that basal rate. So we had a similar methodology. And we developed these what we call today, the DreaMed Advisor. It's that algorithm that optimize the sensitivity factors. So I back into the time we have two pieces of our technology. We only licensed one of it to Medtronic. And we continue to develop the other one because we believe that the other one will have a much more larger number of people with diabetes.

Stacey Simms  12:01

So tell me about that other one, where will it be used? Or you're talking about people with type two or people who use insulin, any type?

Eran Atlas  12:08

So that's an interesting question. So we just we started with an algorithm that basically optimize open loop pump therapy, and we took data from CGM at the beginning. And history of pump delivery basically did an automated way what any physician is doing in the clinic right now. And we developed that technology we got we won a grant from Helmsley Charitable Trust back then in 2015. I out of 70 applicant applicants got $3.5 million to evaluate the performance of this algorithm versus doctors from Joslin Diabetes Center, the School of Medicine yell, Barbara Davis in Colorado University of Florida, within three sites in Europe, with the intention to show that if you are a physician, any kind of type of physician that uses all algorithm, you'll get into the same clinical outcome as if that patient data was analyzed by doctors from these leading academic diabetes centers. And yesterday, the results of the study were published in Nature medicine, showing that we are doing the same outcome. As expert Doc's. If you can think about it, 60% of the cohort, we type 1 diabetes, the adults one are being treated by primary cares where we can do to the to the glucose control of these patients, if we will equip those primary cares with a technology that helps them analyze data and get the same performance as special endocrinologist, what we can do to the touchpoint of changing the insulin treatment of a patient, if instead of the patient will need to wait 3, 4, 6, 8 months to see his endo will have some sort of virtual place that he can send the data and share the data with the algorithm the algorithm will make all the calculation and recommend how to change the insulin dosage or the insulin treatment plan of that patient. So that was the what we did so far. And when we approach FDA, we that FDA didn't know how to regulate such a device. Yeah, because there was no predicate to what we offer to FDA to do. So what we managed to do with a very strong partnership with the FDA team is to decide and we will regulate this device as a new product. So in 2018, we got FDA clearance based on 510 k de novo. So we are the first in the US system that regulated a product that an algorithm can take continuous glucose sensor data and make recommendations to our healthcare providers how to optimize insulin treatment for our patients.

Stacey Simms  14:44

So I'm trying to break it down because that does sound like such a useful tool. I'm an adult with type one, I'm seeing a general practitioner who may not know the nuances of treatment, they take my CGM data, they take my dosing data either I'm assuming either from a pump or from me They send it to your service, the care provider, the doctor then gets the data back and can give the patient advice based on your technology using the expertise and you know, from the algorithm. And that new study said that advice is comparable to Yale and Barbara Davis and all the places that you indicated. Did I get that right?

Unknown Speaker  15:21

Exactly.

Stacey Simms  15:28

Right back to Eran in just a moment. And he's going to be explaining their agreements with other diabetes groups like Glooko, like Tidepool, but first diabetes Connections is brought to you by Dexcom. And do you know about Dexcom clarity, it's their diabetes management software. And for a long time, I just thought it was something our endo used, you can use it on both a desktop or as an app on your phone. It's an easy way to keep track of the big picture. I try to check it about once a week, it really helps Benny and me dial back and see longer term trends, and help us not to overreact to what happened for just one day or even just one hour. The overlay reports help add 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. Now back to my interview with Eran Atlas

Eran Atlas  16:27

And the way that it has been flowing in so we sign a data partnership with gluco. With Dexcom, we take all we have our own platform, so the patient can download the data at home, he doesn't have to get physically to see the provider, which is super important, especially now when it COVID-19 is and then the data is coming to our system, all the provider needs to do is just push a button request the recommendation here we'll get that recommendation and nothing's going to get you know, blurred the things you know, please consider looking on. He will get exact numbers that the algorithm will tell them listen at 6am change the call ratio, that specific patient from one to 15 to one to 10 exact numbers.

Stacey Simms  17:11

All right, I have two questions. From a very practical point of view. I'm curious if you've run into a provider who says I can do this better? I don't need this. Sure. I don't know the difference between Lantus and Tresiba. I'm a general practitioner. But why do I need something like this? Have you run into resistance from providers? Or are they I could see the flip side, thank goodness for taking this off my hands because I don't have the time to learn all of this.

Eran Atlas  17:37

So there are two types of providers. So first of all, that the approval that we have right now the clearance that we have with FDA is just for type one people on insulin pump, we are pursuing the advance of the indication for use for the injection cohort and with the intention to submit it by the end of the year. But in the study that we did, and right now we are we already deployed the system in several clinics around the US. You know, we are in Stanford University, University of Florida, New York University, Texas Children's so that we are already people who have already more than 1000 people that use the technology. And so when we heard for them, these couple of things. So number one, it became they curious, they want to check, we want to make sure that we didn't make any false recommendations. And they're not agreeing 100% with anything that we are recommending. So we always allow them to edit. If there's anything that they would like to edit, they can edit it before they share it with a patient. But as time goes on, and they building their confidence with a system, they are relying on the system, and they're really feeling how they've helped them. So for example, Dr. Greg Forlenza from Barbara Davis said, you know, what would you use of your system, I can stop being a technician, I can learn to be a mathematical or an engineer, I learned how to be a physician. And I wanted to continue to go and practice medicine, I don't want to go and practice engineering. So this is one of the feedbacks. And I think that when we'll code to the mass numbers of providers, there will be different kind of providers, some of them will be resistance, but I think that one thing we'll see the clinical benefit and the response of their patients, I think that it will endorse that and it will build our confidence with it.

Stacey Simms  19:17

I love that that he doesn't want to be an engineer, he wants to be a physician. We should all be so lucky to have a doctor who wants to do that. My other question on this and I'm apologizing just throw things at you to mess up the system. But the first thing I thought of was somebody like my son who's a not an unbiased person, but he's a great kid. He is not a perfect diabetes person. Perfect example that I think would mess up your algorithm. This morning. He had I don't even know coffee, hot chocolate glass of juice. I don't know what he had. But he had something as he's going to virtual school to. He's he's right down the hall for me so I could go ask him, but I can see that his blood sugar has already gone up to 140 it'll drift back down thanks to control IQ. I don't know if he bolus for that drink. If or If people just after, what is the algorithm do when people aren't, quote, perfect diabetics, because you can adjust the carb ratio and the basal rate all you want, but most people with type one aren't automatons who are going to fit an algorithm?

Eran Atlas  20:14

Oh, that's an excellent question. I think that at the end, if you are creating something for the use of people, you have to understand that nobody's perfect. And you have to make sure that the recommendation that you are providing will be a right on the spot, because otherwise it will cause safety issues. So what we are doing, when we're taking the data, number one that we are doing, we are trying to split that data into events, and understand, okay, that's a meal event, that's a bonus event, that is events that usually debatable could make an influence because there's no BOCES a meal. Before afterwards, we also apply different kinds of techniques to automatically detect places where the patient ate, and the bowls for that, or didn't report the name use these calculator in order to calculate the amount of light and and then for each one of the events, we are trying to ask the algorithm is asking himself Okay, is it a issue of dosing problem? Or is it an issue of behavioral problem? Do we see the high glucose posted meal because the carb ratio is wrong, or because the patient just deliveries, bolus 1520 minutes after the meal, and there's no way that the glucose could be down? So we are from our experience, because we are so much integrated with doctors that understand data. And because you know, I'm here, ces 2007 is closing my 14th. year on February, we know so much about people with diabetes, how they behave. So we programmed the algorithm in that way. So the recommendation that we are delivering is on the spot. If we're saying that we don't have enough events that imply on changing and dozing will not issue that we can personalize even the behavioral messages and calculate what is the most important behavioral that will improve the timing range. And we're not issuing 20 types of behavioral messages. Learn to be have a message note, we're issuing no more than three. And we're very specific. So if we're seeing something that happened specifically on the breakfast of Benny world, tell him listen, Benny, please pay attention on breakfast, deliver the insulin, 10 minutes before the meal, because that's what's set what makes your entire day being hot. Or if we're seeing that when he has an iPhone, you just eat whatever he finds in the refrigerator. And we see it from from the dynamics, we're trying to teach him how to compensate for a high pole in a better way.

Stacey Simms  22:46

It's absolutely fascinating. I think that's tremendous that you're building in the behavior as well. And you can really account for it back to the automated systems. And forgive me, Eran, you used a term open loop rather than closed loop and pardon my ignorance, you explain what that is?

Eran Atlas  23:02

Sure. So open loop is what we call using pump therapy with CGM or with self management blood glucose meters without any ID system. So though some people call it sensor augmented pump therapy, some people say just a regular insulin pump therapy. Some people say it's open loop, there is no algorithm that closed the loop in real time and command in real time how much insulin to infuse on an insulin pump based on CGM data.

Stacey Simms  23:33

Okay, if we go back to the algorithm that is more closed loop and kind of looking ahead for what you're planning on that we've already talked about mealtime, boluses, and how challenging they are for people, whether it's estimating correctly or remembering to do them or doing them late. What's your plan for that? I know there were a few AI systems that are looking to try to do away with a manual mealtime bolus is that in the cards here.

Eran Atlas  23:56

So for us is not on the cards at a moment. I think that what we are trying to look is is beyond the AIP system. It is how to help those with type two on insulin, how to have those on injections because think about it a couple of years ago, nobody knew what's going on with people that still doing injections, right? None of them knew CGM you didn't know what's going on with injections because they didn't record that or they just cheating and when they sat in, in the reception area of the clinic, they to complete the paper and and try to make lottery on when they did at those doors. They're instantly now these days been available thanks to the hard work that Dexcom you know avid Medtronic is doing on the CGM space and companies like companion medical and others they're doing you're connected to and and we know other efforts of other companies. You know, no voice is doing that Louie's doing that. So all of a sudden the same problem that we had a couple of years ago when people on CGM and pumps for the type one persons and depression And the amount of data, we're not going to have it in a much, much broader population, you have about 12 million people that dose insulin in the US, but only 1 million of them are on pumps with type one. So the question is, what are you going to do with these 11 million people? And that's where our focus on that's number one, another focus that we are looking at is going into contextual data? And how can we know and combine the fact that we can know where you are from your personal life in terms of you know, if you are driving or you are walking, or you are going into a restaurant? And how to combine that information with the glucose data? And what predictive real time notification we can give you in order to improve that, and the glucose control?

Stacey Simms  25:49

Alright, wait, wait, you're gonna know where I'm driving? I'm walking to a restaurant. Wait a minute back up? Are you in my this is something in my phone? Are you using cell data?

Eran Atlas  25:58

That's easy. You know, when you're driving? Do you have a Bluetooth in the car? Yes. So the phone knows that you are connected to the Bluetooth of the car, right? Yes. So for example, if you will give the permission, our application will be have the knowledge that you are driving? Are you using navigation software?

Stacey Simms  26:17

Yes. Do you have to lift or no, I don't mean to interrupt your train of thought here. But for some reason, I just thought of the Pokemon Go app from a couple of years ago, because it knew when my kids were in the car and not walking, right. I mean, I know I sent you're probably laughing because I sound so ignorant with this stuff. But yeah, with our cell phones, I'm sure that everybody knows where we are at all times. It's

Eran Atlas  26:37

amazing. That's right. But I think again, so I'm not talking about you know, poking your privacy and everything. And it's have to be on a certain things that that the user will need to authorize, or the benefit of the user, but but potentially, many will learn driving, like they will go into any driving license, I'm sure that nobody wants a person with diabetes, that these glucose is going down or predicted to be down in next 30 minutes to start driving.

Stacey Simms  27:05

So would it give in your system, would it then give a reminder, um, you know, I'm walking into a restaurant time to bolus Is that what you're envisioning.

Eran Atlas  27:13

So again, your glucose is dropping in the next 30 minutes it please take something before you start to drive. Or we're seeing that you're going into a restaurant and you're using glucose is sky high, or going high and the high trend, please correct your glucose now before start eating, because then it will be much more difficult to correct your glucose. These are the types of things that you know are examples of how you take context and combine it together with glucose and insulin data.

Stacey Simms  27:41

It's so interesting to me, because I think, especially with the type two community who use insulin, it's a very different world than the type one community where most people well, I'm biased, because my podcast audience is so well educated. But people are thinking about it so much more often. I have lots of friends with type two, who dose insulin who don't really think about it, who don't really know, just because they're, as you said, they're seeing a general practitioner, they're not as educated. It's not a it's not a personality flaw. And I could see where this would be so helpful. Just these reminders with people with type two, have you already learned any nuances of how they want to use this kind of system? Is it different than people with type one?

Eran Atlas  28:22

So I think that within the type two population is very much dependent when there are on multiple daily injection therapy, or they're just doing basic only. So that's one big difference between type two and type one another big difference is Yeah, like you said, they're thinking about the condition differently. They are denying the fact they have a condition. I think that's much stronger than people with type one, especially teenagers with type one that you know, try to break the system and try to see what's going on. But it's still you need to find other ways to do that. And we're still studying eighth, what is the best way to deliver that to people that have type two diabetes. And that's why initially we're focusing on their providers, and try to better understand what people that are treating people with type one diabetes would like to see how we can help the providers provide a better treatment for them. That will be our first step, then when we will get these endorsement and understanding about the actual users will be much more comfortable to offer something that will go directly to the user because as you said it truly it's a different population. I remember

Stacey Simms  29:31

years ago, there was a big push and I know you were you were around. If you started in the mid 2000s, there was this big push to almost gamify type 1 diabetes, right with apps that kind of gave you rewards for checking or here's a game that would help kids learn or even adults. And it turns out that most people didn't want to think that much about it. They just wanted the system to take care of it like stop reminding me to log stop reminding me to dose handle it. Talk to me about how DreaMed will do that. Even though You are talking about reminders,

Eran Atlas  30:02

because I think that the difference between the reminders that are in the market, they used to be in the market. And what I'm trying to talk about is that those reminders were based on general timeframe. So for example, you know, you're logging into the app that you need to take your basal insulin between seven and 9am. And and now it doesn't matter if you are going just to go into deliver that it will be some sort of mechanism to just ping that, that reminder to you and will drive your crazy, right? I think that what dreamin is trying to do is a couple of things. Number one, we're not just giving them regular reminders, we're giving actionable reminders, so it will tell you to do something, because this is the right time for you to do these actions. And number two, we are trying to take off the burden of treating diabetes, you know, taking the burden off thinking about your glucose and thinking about what you need to do right now, for people that use a ID system. This is exactly what he gave them, you know, you know that there is something that looks on your glucose on a regular basis every five minutes, analyze the situation and provide your the actual dozy, but on people with with multiple daily injections are not using pumps. So there is the only way to make the insulin injected is to make some sort of a partnership with a user. So that's what we're trying to do. We're trying to create all the mechanisms that will bring this partnership between the person with diabetes on injections and the algorithms, we're trying to make sure that wherever we are issuing some sort of reminder, it will be an actionable one. And and hopefully it will be within a certain timeframe that the user is willing to accept such a reminder, because for example, if you're driving and then the system is shouting out, give insulin right now there's no way that you're going to give that insulin right because right now you're driving. But if we're able to capture the exact moment that you're open to get that reminder, and this international reminder, it's not a general one, I hope that people with diabetes will find it useful. And I think that's the thing that we are trying to learn together with the community. And to be are we personally diabetes at work for us, because at the end, it's a partnership between the person, the provider and the industry. And that's what we're trying to create. It's important for people to know that there are companies that are not in the US and might be a little bit small, but they are trying to make a difference for you. And I hope that together with what we're trying to do and what the community is trying to do, when we are partnership, we really, really be able to make that difference. Because the culture of dream ed is coming from a clinic. It's a company that the importance of making lives better is on our culture. Another thing in our countries, make sure that whatever we're issuing has a clinical benefit. We're just not not just want to have a cool product and just get more money. And I really, really optimistic about the impact that we can do on people with diabetes. And we're committed to do that

Stacey Simms  33:14

around before I let you go. Do you mind if I ask about the population with type one in Israel? Sure. I'm trying to think I know in Scandinavian countries, it's very high.

Eran Atlas  33:23

it's debatable, but it's between 30 to 50 k people in type 1 diabetes in Israel, this is it. But we don't have a lot of people with type 1 diabetes. If you're looking on the pieds all the peas are being treated by you know, academic centers, big hospital clinics, the clinic that I'm coming from, is pretty much treating a very large portion of this of the kids and adults are usually go in the same way either to a specialist, but the most of them are going into two primary cares. Where were very techie we were had a lot of a lot of people on CGM and insulin pump. We currently don't have control IQ and ease rail. It's not approved so and 670 G is not reimbursed so the majority of the cohort here in Israel are on regular pump and CGM.

Stacey Simms  34:11

This is well as I said, before we started taping, my son is planning a long trip to Israel next summer. So maybe knocking at your door if you're just some hand holding.

Eran Atlas  34:22

I will be happy to I will be happy. Don't worry. Yeah, I think I can vouch for that.

Stacey Simms  34:29

Everyone, thank you so much for joining me in explaining all this. I really appreciate it. I hope we can talk again soon.

Announcer  34:39

You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms  34:45

More information in the show notes Just go to Diabetes connections.com. And every show has show notes we call them I call it an episode homepage as well because not every podcast player supports the amount of stuff I put There, every episode this year has a transcript. Every episode ever has links. And so sometimes if you go to Apple podcasts or if you listen on, you know, Stitcher or Pandora, or wherever you listen, and we are everywhere, right now, they don't support the links. So if you're ever curious, or you can't get to something, just go to the homepage and find the episode, there's a very robust search, because we're up to 325 episodes. So I wanted to make it easy for you to find what you were looking for. But when you do that, you can find more information about DreaMed, and I linked up the study as well that he mentioned, comparing their algorithm to doctors at Yale, that sort of thing. You know, I'm curious, as you listen, what you think about something like this, I feel like this podcast audience is so involved in their numbers in a way that most people in diabetes land are not. I mean, let's face it, there's very few people who are interested in DIY stuff like this audiences. I mean, I know you guys, you're very technical, you're very involved, even if you're listening, saying, hey, that's not me, the very fact that you're listening to a podcast about diabetes puts you in a different educational plane, then, you know, 90 95%, let's say, of all people with all types of diabetes, which is not a knock on them, it's just the reality of diabetes and education. So I'm really curious to see how this can help. Because as he's saying, you have a general practitioner, who's treating people who's dosing insulin, right, they're given the prescriptions out. And an algorithm like this can make it so much more precise and safe for the people who are getting those recommendations from these doctors who, you know, might really want to do good, but do not have the experience of the education in at a chronology. So that's my stance on it. We'll see what happens I'd love to know what you think. All right, innovations coming up in just a moment. And I want to share this article I found about women in diabetes a device design, but first diabetes Connections is brought to you by a new sponsor this week. I am so excited to welcome g Volk hypo pen. 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 evoke hypo pen comes in Jeeva is the first auto injector to treat very low blood sugar. evoke 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 G Vogue logo. g Vogue shouldn't be used in patients with pheochromocytoma or insulinoma, visit Jeeva glucagon.com slash risk.

saw a great article that I wanted to pass along to you from the wonderful folks at diabetes mine. And the headline on this is where are the women in diabetes device design? And I'm not going to read the whole thing to you I will link it up. But the question here was all about our the shortcomings of diabetes technology a result of just the the functional design requirements the way it has to be made? Or could it be related to the fact that there aren't enough women in the medical technology design field, they did a whole survey about you know wearing this stuff, and you know where to attach it, how to put it, you know, dresses, things like that, which you know, at first, listen may sound kind of silly. But when you think about it, wearing the device, the comfort of wearing the device, the mental stress about wearing the device, these are so incredibly important, because people with diabetes men and women, as you know where this stuff 24 seven, I mean, you think about the difference between something that is clunky, that looks outdated, that, you know, just doesn't feel right in your hand. I mean, these things make a big difference in terms of how I hate to use the word compliant, right, but you know, how well we use them how much we use them how comfortable we are with them, in addition to focusing on the pump companies, and in particular Omni pod, very, very interesting take on women who work at Omnipod there, they also focus on women designed accessories for diabetes tech, because when you think about it, and they list all of these companies, you know, we've talked about a bunch of them in the past myabetic and funky pumpers spy belt tally gear pump peels, one of my book to clinic sponsors, thank you very much pump peels, these are all founded by women, because they saw the need and wanted to make life easier and better. So I'll link that up. I really thought it was a great look at a topic that we hadn't thought a lot about before. We focus a lot on what patients need to be involved people with diabetes who actually wear the gear need to be involved. But what about people who wear the gear differently and have different expectations and that by that I mean women. My daughter when she was in high school, wrote a whole paper on pocket equality and did hard research into why women's clothing doesn't have pockets and rarely has pockets that are big enough. I mean, my son puts his phone and his palm I don't know, you know, a lunchbox in his pocket, and he can fit everything in there. He doesn't think twice about it. But sometimes I think about where the heck would I put a pump, if I was wearing what I'm wearing today, right, I have any pockets. Really interesting discussion and hats off to diabetes mine for focusing on that innovations is also your chance to share hacks and tips and tricks that work for you, you know, just little things that make life better with diabetes. So you can post in the Facebook group, or you can email me, Stacey at Diabetes connections.com.

Didn't tell me something good this week, a big award for a familiar face around here. Most of you remember Dr. Nat Strand from The Amazing Race. She was the in the team of Nat and cat. And that was The Amazing Race 17, which I can't believe was 10 years ago. We talked to Dr. strand, earlier this year about working as a physician. And during this time of COVID. And how she was treating her patients. She treats patients with chronic pain and that sort of thing. And we're talking about her on tell me something good, because she is the inaugural winner of the Lisa Stern's legacy Diversity Award from the American Society of pain and neuroscience. So congratulations, Dr. strand. Of course, the ceremony was virtual, but you could follow her on Twitter and see the pictures and see what nice things people are saying about her and I will link up her Twitter account if you don't follow her already. Also, in Tell me something good. Something that popped up in my local group. Brian shared a post about his daughter Emerson about diabetes and soccer. And he said I could share it. And it's actually a story about her. It's a story by her. It is Emerson's sucker rista story playing with diabetes. And this is a column that Emerson wrote that is published on the girls soccer network, I would really urge you to read it especially if you have a child who is a high performing or wants to be a high performing or elite athlete. She talks about no days off. And how well you know I'm sure your mind went to diabetes. That was her mantra in terms of sports. And it has really helped her she says deal with soccer. And with diabetes. I'm not going to read her words here. I just think it's a great column I would urge you to read it I'll link it up on the episode homepage and I'm going to put it in the Diabetes Connections Facebook group as well. Well done Emerson really great to see the incredible hard work that it looks like you've been putting in and what a wonderful column as well. So thank you so much Brian for sharing that and for letting me talk about it a little bit here. If you have a Tell me something good story could be a birthday a diverse serie, you know, your child has published in a national print publication, you know, anything you want to focus on, that is good news in the diabetes community, please reach out and let me know, just tell me something good.

Tell me something annoying, could be the name of this segment, I just want to talk a little bit about our insurance changes, mostly to commiserate with with many who have gone through this. So as I said at the top of the show, our biggest change is now that they're going to switch insulin on us. You know, I talked to Benny about this, we are so fortunate to have a frankly, have a pretty good stockpile of insulin that we've built up. If you follow the show for a long time, you know that I've discussed his insulin needs went way up. And they have gone back down to almost pre puberty levels. But we never changed the prescription. So you know, I have unfortunately or fortunately, I don't know I have shared insulin in the Charlotte area with adults in need. We have some great local groups. And it is ridiculous that we need to do this, but we do share with each other. And I've been happy to help out on that. But we are basically out of pins. And I like to use pins as a backup. And Benny likes to have them for flexibility. You know, he'll take them sometimes. And if something's wonky with his pump, he knows he can get himself a shot, that sort of thing. But I hate the idea of changing insulins right everything's cookin right now everything's chugging along really well. I don't want to rock the boat. But I also don't want to pay $300 for a pen. So I'm going to be talking to our endocrinologist, Vinny has an appointment in two weeks, as I'm taping probably more like a week and a half as you listen. And we know we'll talk about it, then maybe have some samples, but most likely we will be switching and we did not have an issue when we switched in the past. So I have fingers crossed that it will be fine. It'll be fine. But that is annoying. And I know I don't feel like appealing and fighting if we don't need to. It's possible that novolog will work just as well for him. So let's at least find out and we'll go from there. The other issue was, of course, that we are now dealing with edgepark. And I will spare you all of the details. But I tried to do a workaround. And I'm laughing because I should know better by now. I tried to get the Dexcom prescription to stay at our pharmacy because man we've been filling it at the pharmacy for the last couple of years. And if you have already been able to do that, you know, it's like a dream. At least it is for us. It may take an extra day to get it but it's a day. It's not like they're mailing it out for you and it takes three weeks. It's been wonderful. And I just had on auto refill. And it's been great. But edgepark told me, we don't filter your pharmacy, you only can do it mail order. Well, I didn't want to wait. I didn't want to be cut short. So I let edgepark go ahead and fill the order. But then I did some detective work. And I kept calling and talking to people, because what else do I have to do, but be on the phone with these people? And I finally got someone at my insurance company to admit they would fill it at the pharmacy. But here's what she said. She said, Well, we don't like you to go to the pharmacy, because they don't often have it in stock. And I said, Come on, you know, that's not true. They can fill it in a day. They've been filling it for four years. And she said, Okay, well, you can you do a pharmacy benefit and, you know, blah, blah, blah. So I hung up the phone, and I will fill it at the pharmacy next time. I already have the order from edgepark through the mail. And I thought you know, that's just because my insurance company has a deal with edgepark. That's all that is. She's trying to discourage me from going to the pharmacy because that's their business. I get it. But how stupid is that? How outrageous is that? Oh, now you know why I saved it to the end of the show. I will keep you posted on our many adventures as this moves forward. Because Up next, I have to fill Benny's tandem pump supplies. And we've never been able to do that at the pharmacy. So I'm sure it'll be more adventures with edgepark my new pals. Ah, goodness gracious. All right. Thank you to my editor john Kenneth for audio editing solutions. Thank you. If you are still here, listening to me rant. I love you. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

Benny  46:35

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

Transcribed by https://otter.ai

Helene Cooper has type 1 diabetes, asthma, and she's Black. All of those factors increase her risks if she catches COVID 19. They're also exactly what the researchers behind one of the vaccine trials were looking for. She's now in that Phase 3 Trial and shares what it's been like.

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

Helene is also a reporter for the New York Times, covering the Pentagon and has an incredible story that began well before she was diagnosed with type 1 at the age of 15. She and her family fled here from Liberia in 1972.

Join the Diabetes Connections Facebook Group!

In Tell Me Something Good, a few high profile birthdays and diaversaries

Our episode with the Dooley Family

Our episode with Dennis Goldensohn

Plus, Innovations – see through is your organizational friend.

Learn more organizing tips from Susan Weiner

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 One Drop created for people with diabetes by people who have diabetes by Real Good Foods real food you feel good about eating 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 taking part in a COVID vaccine trial. Reporter Helene Cooper has type one and asthma and says she decided to apply after she met Dr. Anthony Fauci backstage at Meet the Press. She says at first, he wouldn't really answer her questions about her odds

Helene Cooper  0:44

And finally, he just he was standing by the door to go on air as we weren't in the same segment. He just stopped at the door. He was like, Look, I'm not saying that you're a dead duck, but she just really need to not get it. Oh, God, I really need to not get this.

Stacey Simms  1:00

Helene is now in a phase three vaccine trial. She's a New York Times Pentagon reporter and talks about what it's been like doing her job and living with T1D during this pandemic

in Tell me something good a couple of high profile birthdays and diversities plus innovations. Why see-through is your organizational friend.

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'm so glad to have you along. I'm your host, Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two. That was back in 2006. My husband lives with type two. I don't have diabetes, I have a background in broadcasting. And that's how you get the podcast.

There is so much in the news these days about the potential for a COVID vaccine. news about the trials political news about vaccines. This episode is a personal story about one woman's experience going through one of the vaccine trials. So I just want to let you know about that right up front. And a big thank you to Gillian McPhee, who in the Facebook group Diabetes Connections The Group shared the article that Helene Cooper wrote about her experience getting into the vaccine and a lot of what she shares here on the show, but I will link that up.

I reached out to Helene on Twitter, and she graciously responded. Now Helene has an incredible story, even before she signed up for this trial. I mean, well, before she was diagnosed with type one at the age of 15. She and her family fled here from Liberia. And I'm going to link up that story in the show notes at Diabetes connections.com. It'll be on the episode homepage. I'd really urge you to read that.

But one of the problems with the vaccine trials was all of the COVID vaccine trials is getting enough people into them. I'm also going to link up more information on that and I'm going to come back after the interview and talk a little bit more about it. I know you want to hear from Helene. And we'll get to that in just a moment.

But first diabetes Connections is brought to you by One Drop. It is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it's the sleekest looking and most modern beater My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data at any time. Instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention they're awesome test strips subscription plans, pick as many test strips as you need and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo.

My guest this week is doing us all a huge service by participating in one of the trials for the COVID vaccine. As we recorded this interview, Helene Cooper had taken the first shot. She is due for the second in just a few days as this episode airs. Helene is a New York Times Pentagon reporter, but she says that's not why she was selected. She explains it is because she lives with type one, she has asthma, and she's black. There are not enough people from any of those groups represented in any of the vaccine trials. I tried to cover a lot with Helene and as this is an ongoing story. She was gracious enough to agree to come back on maybe a couple of weeks that she's further along and share more about her experience. So here is our talk.

Hello, and thank you so much for taking the time to talk to us about your experience. I really appreciate it.

Helene Cooper  4:35

I'm happy to be here, Stacey. I've never been asked to talk to diabetics before. So this is kind of cool.

Stacey Simms  4:40

Oh, nice. Well, I always like to tell guests like you that you don't explain the difference between type one and type two. We speak the language. We get it. I'm just so interested in so many of your experiences. But let's start with the COVID vaccine trial that I saw that article came to my attention. How did you get in the trial to be If you could kind of start from the beginning,

Helene Cooper  5:01

okay, I was watching Dr. Fauci on testify, I think it was before the House. It was either July 30, or the 31st. And he said that all of these vaccine trials were getting underway. And he said they needed volunteers. And he rattled off the name of a website that you could go to to volunteer. I don't know why I did it. But I just went on to the website, and I filled it out. I said, I was type one diabetic, I put that I have asthma I did. I filled everything out and went on about my business. And then a couple of weeks later, I was in the Outer Banks. So it was like, it was somewhere around August 28, the week of august 22 23rd 24, something like that. I got a phone call on my cell phone from GW from a clinical research associate, who said I had been picked for the Maderna trial.

And then I got nervous, because it's like, it's one thing when you fill out the questionnaire, and you think they're never going to call you and then they call, she said that I've been picked because I was type one diabetic, they needed to see if the vaccine was safe for people like me, I asked her a lot of questions. Because my first fear that a friend of mine had put in my head was what if they give you the vaccine, and then send you to like a high risk area and ask you to wander around without a mask or anything like that. And I thought, Well, I'm not doing that.

I've been super careful for the past six months, because I think we heard pretty early on, I still remember that sinking feeling in my stomach back in February, and March where they started talking about the high risk people and seeing diabetes. And it just said diabetes, it didn't say type one or type two, which drove me crazy, because it's like, these are two different diseases. And do they mean but whatever.

When I saw I had run into Dr. Fauci back in on March 8, when I was in the green room for a Meet the Press episode. And the first thing out of my mouth, I walk in, and he was sitting on the chair, and it's like, wow, look, it's like I recognized it from TV. And I was I immediately started talking to him about COVID, because that's what he was there to talk about. And I was like, Well, I'm type one diabetic and blah, blah. I was like, you know, what happens if I get it? And he was like, he kept. He wasn't beating around the bush. But he kept saying, you need to not get it. And I was like, Yeah, but what happens if I do get it? And he was like, No, you really need to not get it. And he wasn't he wasn't answering my question, but not answering my question. And I wanted to know like, okay, most people get it and there's a 98% chance they'll be fine. My like a 93% chance or what, exactly what, and finally, he just seems standing by them. He'd walked out the door to go on air, because we weren't in the same segment. He just stopped at the door. He was like, Look, I'm not saying that you're a dead duck, but she just really needs to not get it. Oh, God, I really need to not get this.

So I have covered the Ebola pandemic in Liberia. In 2014. I didn't Liberia for a month during Ebola I and at the time, I understood then that I really needed to not get Ebola as well being a type one diabetic. So I put into place my Ebola protocols. I think I called them on March 8, where I was washing my hands all the time, I was staying away from I stopped touching people. I was I've been and I've been really careful. I wear masks. I only just now recently stopped wearing gloves everywhere I went that I had been doing that for a while. And nobody's come into my house except my mom, my sister and my nephew. And brother in law. I'm like, so I'm probably much more careful than most people are. Because I think we kind of have to be because there's so much we don't know, I'm just rambling at this point, not letting you ask any questions?

Stacey Simms  8:41

No, it's wonderful. A lot to unpack there as Yes. So let me go back when you said there's not a lot of information about type one and type two, we you know, in the community, we're talking about that all the time.

Helene Cooper  8:52

Yeah. One of the things everybody I've asked about it has said they don't because I went to my normal diabetic doctor, and I was asking her about this. And she said the problem they don't know. All they know is that the people who showing up in the hospitals and needing to be put on ventilators and leading and having severe reactions and get you know, and you know, getting really sick and dying. A lot of them tend to be diabetics, but then I asked, you know, are they type one are they type two, and they're certainly type two, but she seemed to think that they're type ones as well. And that's what this is based on. This is at this point. There's so much about Coronavirus that we don't know COVID-19 that we don't know. And so the whole high risk category for diabetic that has been determined simply based on the fact that these are the people who are showing up in the hospitals.

Stacey Simms  9:46

So let's talk about the vaccine trial, get the call.

Helene Cooper  9:49

I get the call. I freak out. I call my friend first I called my normal doctor but she's very super cautious and her response was like Why does it have to You. So I was like, Okay, I'll Park this somewhere for a second. And I called my friend, Kendall Marcus, who's an infectious disease specialist. Her response was immediate, she was like, vaccines are super safe, you should do it. And for Kendall to be just complete, like, usually she's cautious, too. And she's like, you got to be careful. But it was just complete. No, you should do it. And so I got a, you know, we talked through it. And she, you know, explained some very complicated sounding stuff about how they work because I thought they were going to be putting a little bit of COVID in me, and but she said that the modern no one was not that is messenger RNA is basically tricking your body into making antibodies by feeding you a little bit of mRNA, that makes your body think that it has COVID. So she was like, there's no chance that you could catch it from this, when there's no chance that you could give it to anybody from this.

And so I went, I showed up for my appointment, it was on a Wednesday, they give you it's, you're there, I was there for three hours, they gave me a COVID test, the nasal swab, because if it comes back positive, you're not going to be in the truck, because there's no point of you being in the truck. They gave me a lot of time, they gave me a full physical, took blood made me take a pregnancy test. There's all this stuff. And towards the end, then, is when I got the shot where the doctor was like, Okay, you've been randomized, you know, the blind woman is like the double the unblinded person is coming. Because of course I hadn't read they told me all of that in a sheet that they sent me that read talking about that, which is my own fault. And then the nurse came in with the vaccine, and she was not even looking at me and as a reporter, I'm, like, filled with questions. It was like, Are you kidding me? Like, is that what is that? Is that the placebo? Is that the vaccine? Which one? Is it? Going through all of this? I want to make sure I you know, I'm getting the vaccine, I know placebo, and she was just like, you need to just, you know, she said nothing.

Stacey Simms  12:00

Well, yeah, if anybody else knows besides that person, then it can be, it can ruin the whole study!

Helene Cooper  12:07

I got so much s--t from people when I put that in the article that I was harassing the woman about this dude, like you're violating the sanctity of the study. But it's just like, you kind of want to know if you got the placebo vaccine. When you posted your story in my facebook group for the podcasts. People were very well they Yeah, not pleased. No.

Stacey Simms  12:30

But I can tell your personality, right? Yes,

Unknown Speaker  12:33

you can laugh. No worries.

Stacey Simms  12:36

One of the questions that actually came up in the Facebook group was whether you were the only person with diabetes in the trial. Now obviously, you don't know anybody else.

Helene Cooper  12:42

But it was. I am not because ever since I wrote that story I've gotten a lot of people have tweeted me, including type one diabetics were in the trial who have been and there's this one guy who's been so great, because he's like, let me tell you what happened to me I'm in the same type of trial. It's like his was with Pfizer. I think mine is butchering it, but it's the same technology. And he was like, the first shot felt totally normal, just like you and then the second shot, my sugar level shot up, I was sick for 36 hours and then it went away. And he was like, but it was just as if I had you know, how you get when you're diabetic with a flu, your sugar level goes high and all that kind of stuff. I was like, that means you got the vaccine. And he was like, well, be careful. You know, because just the cuz you sound like you don't think you're You got it, but I didn't I didn't think I got it when I got the first shot. And the second shot was like, Huh, so now I'm worried about the second shot.

Stacey Simms  13:32

Well, I was gonna ask you, did you have any kind of reaction blood sugar wise to the first one? Nope, nothing. I mean,

Helene Cooper  13:37

just some aches and pains. Um, some muscle joint, which I don't, I think was because I was camping on the beach. And I got like the the I got the stuffing pounded out of me by these ferocious waves was

Stacey Simms  13:51

curious if you asked your friend who said what if they give you the vaccine, and then they want you to test it by wandering around a hotspot? I can't imagine that's actually part of any clinical trial.

Helene Cooper  14:02

I would think wouldn't you do that in phase one? It's not part of phase three. But what's the What is it? Wouldn't phase one be remember? Did you see Contagion?

Stacey Simms  14:14

Right. But she did that on her own?

Helene Cooper  14:16

Yeah, but they got it tested some kind of way. How are they going to find out if it works if they don't see if it works? If they don't expose people to it? Yeah, shape or form. I mean, he was getting at. I got a lot of grief for that for putting that in the story. But I thought that was a very legitimate question to ask. And as a non medical person, that's what you're gonna wonder.

Stacey Simms  14:42

Okay, I'm gonna jump in here for just a couple of minutes. If you are wondering about that point yourself or maybe you are screaming at the two of us in frustration. Here's the real deal about how they do vaccine trials. Once participants get a vaccine will the researchers intentionally expose them, right? That's what we're talking about here. Will the researcher send a lien into a crowd of people as in the movie Contagion? Which, if you haven't seen it, it's a 2011 movie. It's all about if you haven't guessed, it's all about a pandemic. There were scientists who worked on that movie and made it very realistic and therefore quite terrifying. But to the question of did they send people who got the vaccine out into infected crowds? No, of course not. That is unethical.

I did a little bit of looking into this. And so here's what most of the publications say, because there are still no effective therapies to prevent someone exposed to COVID-19. from falling seriously ill intentionally exposing patients is a no go. Instead, the idea is to observe the number and severity of naturally occurring infections. Among the many thousands of volunteer participants who receive vaccines, or placebos. If there are notably fewer infections, or milder infections among the vaccinated group, that's how they tell the vaccine is working.

So I want you to take a moment and clarify that and we will go right back to my talk with Helene in just a moment. But first, diabetes Connections is brought to you by Real Good Foods. We've been enjoying Real Good Foods for almost two years now. And I got to tell you, I think with all of their new products, everything's great. But the pizza that we started with is really still our favorite. And we got an air fryer A while back. And that has really taken stuff like this to the next level. Although my I shouldn't say that because my husband still prefers to heat up the pizza, in a frying pan, or saucepan, kill, just heat it up that way. I don't know, maybe he doesn't wanna get the air fryer out. But to me, it's crisp beer, it tastes better, one less pan to wash at the end of the day, you can find out more about where to buy Real Good Foods. Our whole line is available in Walmart and local grocery stores. You can also find everything online, go to Diabetes connections.com and click on the Real Good Foods logo.

Now back to my conversation with Helene, where we are finishing up talking about that movie Contagion. And obviously, that movie was worked on by experts.

Stacey Simms  17:14

We've all heard all those stories but I haven’t watched it

since COVID. Started, I can't bring myself out

Helene Cooper  17:16

a good No, you gotta go do it. I did it. And I like it'll, it'll, it'll make you even more careful.

I watched it in March. I was like, Oh, hell no. Stay. Oh,

Stacey Simms  17:30

I will. Alright, I'll have to go back and look at that, then what happens? Is it a second shot? And then you're done? Or do you? I mean, they'll follow you. But are you done? Not

Helene Cooper  17:38

that they follow you up? Um, there's an app that you have to answer. The first week, the app was making me answer questions every night, take my temperature and all of that. And then it's gotten bored with me, and it stopped now. So I haven't gotten any good. So then you have the second shot. And they follow up with you. They're supposed to call you every week. And you answer questions on the app, and they just track you. And so presumably, it's a two year study. But they're shooting for, you know, a few months. Yeah, very quick.

Stacey Simms  18:11

And because they're they wanted to look at people specifically with diabetes. Are they also asking you to track blood sugars and things like that? Or they're just looking for safety?

Helene Cooper  18:19

or remotely related to but which I find curious, because that's like, they have not the questions or fever, body aches, pains and all of that they didn't that none of the questions are because the questions are all for the 30,000 people. So they're no special. I'm not in a special diabetic subgroup. But

Stacey Simms  18:37

it's interesting, because you are in three subgroups, diabetes, asthma, and being a black person. Yeah. So as you said, they were looking for people, you know, do you know if they were successful trying and this is gonna sound? I mean, I asked this question they were looking for

Helene Cooper  18:53

they I don't know the answer. They at GW moderna paused its trial to expand it because at first they weren't getting enough black people. So they went and cast the net, even wider. And I think they believe they've now got a representative sampling. The people at GW said that they felt that the sampling that they were doing reflected the city of Washington DC, which means then that they had a high black population.

Stacey Simms  19:18

So listen, you have a job that I assume you cannot do, only from home. No, I can't Pentagon is your beat.

Helene Cooper  19:25

I'm home a lot. And the Times went to, you know, to send us home back in March, march 13. And they're really good about that. And I do a lot of my job right now I do at home, but it's so different. It's harder, and I do have to go to the Pentagon and I do meet sources. And so I wear the tie I was issued and 95 masks by the times and you know, full, you know, kit, full kit and 95 mask. And when I go to work, like during the protest, for instance, I did some a little bit of that went to the Pentagon when I go to meet for sources and all of that Especially when you're at the Pentagon where you have to wear a mask in the building. A lot of people don't wear masks inside their individual offices. I've been in to meet with top generals at the Pentagon who have you in the office, but they're not going to wear a mask, they will take your temperature, but I don't think I think that's pointless. Yeah, test your temperature. But once you're inside, and then they'll always say, Oh, don't you can take off your mask if you want, but I never do. And I, that's when I wear that. And 95 because that will protect me, not just because you wear a mask to protect other people primarily, but the N 95 will protect you.

Even before COVID I'm curious, you know, a high powered career very busy, but also very much in when you work at the Pentagon, you're not fooling around, I'm curious if you would share a little bit about how you manage type one. Sure, your job, you have a son who's type one, so you know that it becomes like brushing your teeth, it's just something you do. I'm testing myself, you know, eight to nine times a day, I'm taking multiple shots a day. And that's just something and I've gotten really used to, I test in front of anybody, I don't wait, I don't like you know, I don't go, my sister laughs at me because I take my shots through my clothing, because sometimes you can't, you know, the needle, go through your clothing. And if you're on an aircraft carrier in the middle of something, you don't have time to go find a bathroom to you know, whatever.

And it's a long time ago, one of a doctor, Dr. Joshua barzilay, in Atlanta, when I was I just moved down there in my 20s. And he said, you know, you have a choice, you can make the diabetes conform to your life, or you can make your life conform to your diabetes, and I made a choice, I was going to make the diabetes conform to my life. So I've done everything I was embedded in with the third infantry division for the Iraq war I was I've been, you know, with all special ops groups, you know, behind enemy lines, I do all of that kind of stuff. And I just I keep a tight rein on my sugar levels. But there plenty of times where I have problems, you know, I've had insulin reactions, thousands of insulin reactions there. Because if you keep in control, you're very close to low, right? You know, if you're keeping between 80 and 120. It's, I've never gotten to the point where I have figured out how to keep between 80 and 120 and not have 60s, you know, you're running around at 300 400, then yeah, you're not gonna have insulin reactions. But if you're keeping in control, then you're gonna hit lows. And so I hit I hit lows, lucky in that I still feel them. I can tell when it's coming on. I carry sugar pills around with me everywhere. They're sugar pills. In every pocketbook. I have their sugar pills in my fanny pack their sugar pills everywhere. And that's sort of how I deal with it. And so I feel fine. I've had it for what I'm 54 years old now. And I got it when I was 15. So that's a long time. I haven't had any of the my kidneys are fine. My You know, my eyesight. I can't see for s--t. But that's not because I mean,

Stacey Simms  23:11

we're all wearing glasses.

Helene Cooper  23:12

Yeah. And everything so far, knock on wood looks okay. But it's something that you just you just deal with you. I mean, which you know, I assume because you've got a son who's just dealing with it.

Stacey Simms  23:23

Do you use any tech? Or have you seen either technology insulin pump CGM, stuff like that, not your style.

Helene Cooper  23:28

I don't like the pump. I tried the pump. And I didn't like it. I tried the continuous blood monitor. And I didn't like it. So I still I use pens. I have a mantra for my long acting, and I'm on human log for my short acting. And then I have the one touch you know, and I it's five seconds. And it's really easy. My doctor is so pissed at me because she's been after me for two and I won't do it. And every year she's like, Look, it would be so I tried to Dexcom and I hated it. It's waking up in the middle of the night and striving you not. And so I stopped after one month. And so she's I mean, I'm probably gonna fold at some point, but I haven't pulled it yet.

Stacey Simms  24:06

Well, I wouldn't call it folding if you want to try it jump into the group or I know you know what you're doing. But there's some advice on how

Helene Cooper  24:12

to not make it drive you up a frickin wall. Because it? I mean, yes. Oh, I would like probably that advice, because I think at some point, I'm gonna have to just do it. Well, that's another story.

Stacey Simms  24:22

Yeah. Tell me about your diagnosis story. You were diagnosed at 15.

Helene Cooper  24:26

Yeah, I my dad was diabetic. And for some reason, I think he was type one. I don't remember his type one or type two. Because he died in 1985. And I think he was type two, but he was taking insulin regularly and fairly aggressively, which makes me think maybe he was type one and we just didn't, I don't know.

Stacey Simms  24:46

So yeah, it's at that time, too. They didn't know about Lada and all the other things.

Helene Cooper  24:50

He was diagnosed when he was like 40. So that's, I think that's why they But anyway, so that's a whole nother set. Let's not get in. Let's get into what I know. Anyway, My mom, as it turns out, now it's type two. I'm from Liberia, West Africa. And my family had moved here in 1980. I was living with my dad, my parents had split up. My mom was back in Liberia for a year and we're living my sister and I were living with our dad in North Carolina and Greensboro. And I started running to the bathroom and being thirsty all the time. I was like, 15. Then I was a junior in high school, and I started dropping weight. I was skinny. But then I got really skinny. But I thought I was but I was eating. I was so hungry all the time. And I was convinced I had blown up because I was eating like seven meals a day, and horribly hungry. And in the middle of night, I was going downstairs and drinking apple juice and eating food. And I was like, I have to be so fat. Why am I eating like this? And my mom showed up to visit us and she came to the house Liberia and she my dad came to the school to surprise me because we didn't know my mom was coming. And they came to the school to surprise me. And they got me out of my class. And I go running. I was like, why are you living with me? And he's not noticing because you're seeing the person every day

to the doctor, and I was diagnosed and I was ended up in the hospital for a week in pediatrics.

At 15 I was very outraged that they put me Yeah, true. Yeah,

Stacey Simms  26:27

I bet but they're also at 15. You have no sense of your body, right? Your thumb. Oh, yeah, I'm eating

Helene Cooper  26:33

That's amazing. Yeah, I was so convinced that I was a pig. I was like that it was like all whatever. But anyways, so that's when, and so I remember they put me on this is so far long ago is like the 80s. They put me on these three different types of insulin to start x rapid, semi tard, some other top monitored, and I was having instant reactions and then shooting up and they were trying to I would take one shot in the morning. And that was it. And I couldn't get it under control. I was I was hungry all the time. Because they had they started me on too much insulin. And so I was hungry and eating. And it was just really it was bad. And I was only testing that's back when you would test with urine. Yeah, this is all before, this is a long time ago. And so I took my insulin, but that was all I would do. I would take my insulin in the morning, but then I ate whatever I want it. And so I was completely out of control. And it took years for me to get my act together. I mean, I went through college, you know, I feel like on a wing and a prayer, I took my insulin. So I never got went to the point where I didn't take my insulin, but there was a lot of but I was eating whatever I literally whatever I want it. And it wasn't like it was that much. But it was like you need to be 10. And I wasn't testing I would go like here and test myself. And then when I got out of college, I started a job in Providence, Rhode Island. And I was working out a lot then. So things my sugar level was probably much better in was lower, but I was having insulin reactions all the time. And then when I moved to Atlanta, and I met this doctor barzilay. And that's when he told me you can do this, or you can do that. And what he did for me that was the most important thing was if you are comfortable with taking multiple injections a day, and with testing yourself all the time, you can do what you want. And that was the that was the breakthrough for me.

Stacey Simms  28:30

Right? Well, somebody gives you a plan of action, rather than saying, here's the older insulins that really don't work to your life. Here's a man. No, you followed that.

Helene Cooper  28:39

Yeah, better. No, it was great. Because once it's like, once I realized it was like if I know a knowledge is power, he if you're willing to take the shot, it's nothing I don't, it doesn't bother me. And testing my blood sugar doesn't bother me. And if he sees like, if you're willing to do that you can do you can live the way you want to live. So it's great.

Stacey Simms  28:59

Before I let you go, I'd love to talk a little bit more about the clinical trial. Okay. very beginning of it. Are you so far happy that you did it?

Helene Cooper  29:07

Yeah, I'm happy I did it. I want to be part of you know, I want to be part of the solution. No, I've none of us want to keep this going for it's like, we're all shut in and we want it over to right. And it's at some point with the you know, we're gonna have to take a vaccine anyway. So yeah, I'm glad I did it. Whether it's a placebo or a vaccine, I'd be if I dropped dead from it. I won't be glad but that I'm gonna be glad I did it. Right.

Stacey Simms  29:33

Well, there was a lot of skepticism. Yeah, people of all political persuasions, yes. races of all disease states. I mean, let's be clear, not singling anybody out here.

Helene Cooper  29:43

Any message for people listening who may have an opportunity like that to take part in a clinical trial and are hesitant follow the iron. You know, that's I'm I'm a big believer in science. So that's, I'm divorcing myself from the politics. I you know, the whole vaccine by election. De that's not even going to happen. That's irrelevant, you know, even if they have somebody, at most be an announcement, but that's not going to mean anything. And that's meaningless, you know. And so just stick to the just follow science. If we follow science, we'd be better off on COVID to begin with, and science is certainly what's keeping me alive. So,

Stacey Simms  30:19

next step for you is the second part of the vaccine. And then maybe we can follow up with you in a couple of months if that's okay. Happy to wonderful

Helene Cooper  30:28

and I'll be complaining that death they definitely gave me the placebo.

Stacey Simms  30:32

And I can give you my review of contagion.

Helene Cooper  30:34

My re review. Okay, you if you watch contagion, I will come on your show again. Alright, we'll do I've

Stacey Simms  30:39

seen it, but it's been a very long time. So we watch it. Oh, you

Unknown Speaker  30:43

won't sleep that night.

Stacey Simms  30:44

I don't sleep now. Helene, thank you so much for joining me. It was a real pleasure and so interesting, I appreciate it.

Helene Cooper  30:51

It was fun talking to you, Stacey.

Unknown Speaker  30:57

You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms  31:03

More information about the Vaccine trials and about Helene story at Diabetes connections.com. Just click on this episode, click on the homepage for it. There is a transcript we do that for every episode starting this year, really excited about that people seem to really like it. And I started that in January of 2020. And I'll continue to do that.

I'm also going to link up one of the many articles about the difficulty that scientists have had and researchers have had in recruiting black volunteers and other people of color to take part in these trials. And something to keep in mind is that the National Institutes of Health has suggested minorities be overrepresented in the testing at rates that are doubled for their percentage of the US population. So there's a lot more information on this as to why and how historically black medical institutions are getting involved. I thought that was very important.

You know, of course, we're looking at this through the lens of type 1 diabetes. But this is something that as you listen, I think it's important to be aware of as well. And boy, do I appreciate her coming on and sharing her story. the good, the bad, the ugly, she got a lot of pushback, as you heard for that article. And I will follow up in a couple of weeks. And I'm assuming she will have the same amount of candor. Next time we talk.

Tell me something good in just a moment. But first diabetes Connections is brought to you by Dexcom. And you know, we started using control IQ that is the Dexcom G6 Tandem pump software program back in late January of this year, and we're doing less work for better results. I'll say that again. less work better results with diabetes. And I say we but it really is all Benny at this point. I mean, he's 15. And you know, you think about when we first got the CGM just to show up on the pump. What was that 2017. And that was a cool feature, but it didn't do anything right. But that secret sauce in the control IQ that keeps Benny in range so much more. It really lightens the burden. I think that's the best way to describe it is a one C has come down it was already really good. We're just thrilled. Of course individual results may vary. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

In Tell me something good this week. We have some fun things to share diversities and birthdays. A very, very happy birthday to the Dooley family and I'm going to wish a happy birthday to the whole family because parents Christina and Greg celebrating with their triplets, Mia, Isa and Max. And I cannot believe that these kids are 10 years old. You may know the Dooley’s better. As the Inspired by Isabella family. Isabella was diagnosed with type one as a toddler. And she and her family have just been a huge part of the diabetes online community of friends for life. So many things. And boy, these kids are just knocking it out of the park, each with their own personality and strengths of course and different hobbies. But they all really seem to come together to support Isa. Christina is one of these very creative moms. She does all the stuff that I never did or dreamed of doing. You know very crafty, very, very fun with costumes, lots of lawn stuff going on since they've been stuck at home I mean this 10th birthday. I'll see if she'll put a picture too in the Facebook group but you know number 10s all over their lawn and big cutouts for the kids hobbies. So a big Happy Birthday to the Dooley triplets to Mia Isa and Max.

A big congratulations and a big diversity to Dennis Goldensohn. Dennis is a longtime listener and I first talked to him he's been on the show. I talked to him about reaching the age of 65 when Medicare kicks in, and we talked when he had just finished his first year on Medicare so I will link that up but I mentioning him now because he is celebrating 50 Two years of type 1 diabetes. And he posted in the Facebook group he has that Lilly medal that they give for, you know, for big milestones.

And he wrote, Hey, everybody, thanks because he was getting a lot of really nice comments about it. The objective here is not to brag about an award, but to say yes, it is possible to live with T1D and live a productive and long life. Now that is worth bragging about and what is really possible lead by example, Dennis is also very active in JDRF. I was gonna say his local chapter, but I think we're all one chapter now in North Carolina. So he's in the Raleigh area, I'm in the Charlotte area, but he's also active as a mentor. And I really appreciate it. So congratulations, Dennis. Here's to many more healthy years. And thanks for sharing that with us.

My episode last week with Jeannie Martin, who was diagnosed in the 1950s and has lived with type one for 66 years got a lot of attention. And it was it was just very well received. I mean, why not? She's fantastic. And I heard from other people who have lived with type one for a long time, who shared their stories. And Ron Doyle is one of those. He was diagnosed at age four in 1959. I am living life well. I'm a full time employee at age 65. I'm going to retire in my 70s. My Doc's told my parents, I would likely be dead before age six, but it's been a great life. And he writes, I still have all my toes at other important extremities. And Ron also shared I showed him an email back and said, Hey, thanks so much. Can I share this? And he replied, absolutely. Most people do all the good news they can get. He works full time as an IT guy, and he has a monthly radio show on tech. I'm going to link this up because his podcast, he says is tech for us gray hairs like me, I like to stay busy, Ron writes, and I will link up gray haired tech because I don't have any gray hair yet, Ron, but I probably could benefit from your podcast. And I'll put that in the show notes as well.

If you have a good news story, a diversity of birthday something cool, you've done a big milestone you know, a marathon or you've you've got up Mount Everest, whatever you want to share with the community. Just reach out and let me know you can always find to be Stacey at Diabetes connections.com. Or you can post in the Facebook group every once in a while I will ask for more good news stories. I love hearing from you. Thank you so much.

My new segment innovation is all about tips and tricks, listener suggestions to make life a little bit easier with diabetes. And sometimes the innovations are big clinical trials approvals, that sort of thing. This week, I want to talk a little bit about organization with a great bit of advice I got from Susan Wiener. She is very well known in the diabetes community. She was the 2015 Diabetes Educator of the Year she's a registered dietician nutritionist, a certified diabetes educator, she's, she's the best I love Susan, I'm lucky enough to call her a friend. One of the things that she told me and she has a great book too. It's called the complete diabetes organizer. And well, that book has so much advice in it, we're just gonna focus on one little thing here.

And that is being able to see what you've got in terms of diabetes supplies. So if that means you're taking the stuff out of the box doesn't mean we know we get pump supplies or Dexcom supplies or even insulin, it's in a box that you cannot see through. So her advice is to put it in a clear plastic box so you can see from the outside. Or if you really can't tell at least Mark what it is on the outside, you know, tape a piece of paper and use a sharpie and write on it or use a clear plastic shoe bag, you can put individual supplies there. I've seen people put snacks in it so the kids can get what they want, you know carb counted, snacks are separated, you know, however you want to do in your household, but everybody can see. And the one thing I would add to that is whatever you do if you're taking your diabetes supplies out of boxes, and I do this because I also use

Gosh, speaking of organized, here's a little plug I use the T1Dgear, folks, there's a really wonderful small homegrown business, and they do 3d printing. And I'll link that up in the show notes as well but I use their stuff a lot. But you have to take everything out of the box, you've got to keep the labels if you need the lot number if you have an issue if you need the serial number of your Dexcom you know all this stuff. So if you don't have room to keep the actual boxes, and you're not a big like Ripper offer, a lot of people hate to keep those little strands of paper, you know, like I'll just shoot I'll rip off the front where it has all of the information or cut it out neatly. I don't cut anything neatly, I clawed off like an animal. But you could also take a photo, take a picture with your phone have the lot number and all of the information.

And that way you'll know what goes with what and that way if you have to call in a Dexcom replacement or you have a box of pump in sets that are not working correctly. You'll have the information in front of you and you can call it in it's all well and good to get organized. But if you can't see when you're running out of something, and then I know the people with little kids don't get it yet, but when your teenager uses the left decks calm and doesn't tell you and leaves The box in the storage area, right or uses the last pump inset, and just hasn't said anything. I didn't realize it was the last one. That's where the yoga and meditation comes in. So you can use these tips maybe to avoid those kinds of situations. And thanks again to Susan Wiener. I'll link up that episode to Gosh, I think it's about two years, maybe longer. Now, since we've talked, it was a great episode about getting diabetes organized. I love her.

Thank you so much for listening to this episode of Diabetes Connections. We have a lot of great stuff coming up. In fact, I have so much, I might have just more bonus episodes. I don't know I'm sifting through personal stories and sports stories and technology stuff. It seems like towards the end of the year, you know, we take a breath in August and the beginning of September, and then it's just a race to December. And that's how it's going this year. So I'll keep you posted. But please join the Facebook group. That's where I put most of my questions for you and pulling in that sort of stuff. Thank you to my editor John Bukenas from audio editing solutions. Thank you so much as you listen, I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

Benny  41:11

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

Jeanne Martin was diagnosed with type 1 diabetes at age ten, in the 1950s. Technology was very different back then, of course, but so was the medical community's reaction. Jeanne was told she would never have children and if she did, she wouldn't live to see her children grow up. Today, Jeanne not only has a daughter, she's also a grandmother. She shares what she’s learned along the way. We also talk to Jeanne's daughter Jessica, who talks about growing up with a parent who has type 1.

In Innovations, find out why when it comes to keeping track of long and short acting insulin, a CDE says invest in rubber bands.

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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Other episodes with amazing people living long and happy lives with T1D:

Richard Vaughn was diagnosed in 1945

Judith Ball was diagnosed in 1941

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

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Episode Transcription

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

Announcer  0:24

This is Diabetes Connections with Stacey Simms.

Stacey Simms  0:30

This week, Jeanne Martin was diagnosed with type one at age 10. Back in 1955. She's had to fight a lot of doctors along the way, including one who told her she would not live to see her child grow up.

Jeanne Martin  0:45

And my reaction was I told my husband that guy can go walk up the street and get hit by a bus tomorrow. I'm not going to go along with that. That's was my reaction. I got mad. I didn't buy into it. I didn't get depressed because I Just thought he was full of baloney.

Stacey Simms  1:00

Jeanne was right. She's now a grandmother. And she shares what she's learned along the way that made her question and stand up to doctors like that. We're also joined by her daughter, Jessica, who shares with like growing up with a parent who has type one

in innovations this week why a diabetes educator says invest in rubber bands. 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 Diabetes Connections. I am so glad to have you here I am your host, Stacey Simms, and we aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two that was back in 2006. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and that is how you get this show. I spent 20 plus years and local television and radio news.

I've been doing this show for more than five years now and I don't remember Ever putting the topic of the show to a vote, but I did that for this week, I put up a poll in our Facebook group, it's Diabetes Connections, the group, I have a couple of interviews. I'm usually a few weeks ahead with interviews in the can. And I asked the group to vote on which interview they wanted to hear next, and everybody chose Jeanne, I cannot say blame you. I am always amazed at the strength of these people, the stories of people who are living well with diabetes for 50 60 70 years. I mean, you think about it, before blood glucose meters were a thing. I mean, they weren't available to the 1980s. And this was a time that we're talking about with Jeanne before some doctors would even know about different types of diabetes. I was shocked to learn that that for a very long time, it was just diabetes and you treated it with a one shot a day, or then they would say juvenile diabetes. And you couldn't possibly have that if you were an adult and you're just on and on.

And if you're new to the show, I've done several interviews with people who were diagnosed in the 50s in the 40s. And they've lived with type one for 70 years. And I will link those up with this episode. You can also search with a very good search engine at Diabetes connections.com. We're up to more than 320 episodes. So if you want to Google keywords like living long or 60 years with diabetes, that sort of thing. You can find that on the website.

Before I get to the interview. I want to read something that was sent to me it's actually a review on Apple podcasts. I'm really bad at asking for reviews and keeping up with reviews. If you want to leave one up man, I would love it. Whatever podcast app you listen on, there is a way to leave a rating or review. This one came in from Shelley. Now her name is not on this but I know who this is because we featured her. We featured her son in a recent show. So Shelley wrote I love this podcast so much. I learned so much from listening especially enjoyed the tech episodes with Dexcom and Tandem etc. As the mom of a newly diagnosed four year old. I have found much needed encouragement and tips for helping and thrive with diabetes. Also, cannon was excited to hear you mention him swimming in the lake. Surely thank you for writing that. Yeah, we talked about cannon she had sent a picture into the Facebook group about him burning off the glucose. She said swimming in the lake pan swimming is one of those ways where Benny used to just those little kids just swim with every part of their body. They used to go low all the time in the pool. It's a little bit different. Now you know, a 15 year old does not swim like a four year old. But surely thanks for sending that review in. It's always nice to get reviews like that. And if you like the show, truly the best thing to do is to tell somebody about it tell somebody in the diabetes community. That's the best way to get the word out.

All right, Jeanne and her story in just a moment but first diabetes Connections is brought to you by One Drop, getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized tester plans plus you get a Bluetooth a glucose meter test strips lancets and your certified diabetes coach, subscribe today to get the test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of One Drop lives with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to Diabetes connections.com and click on the One Drop logo.

I feel like I've known Jeanne Martin for as long as my son's had diabetes. That's almost 14 years. And that's because while I have never met Jeanne in person, I have been friends with her daughter Jessica Graham for even longer than those 14 years. We met when Jessica was in public relations here in Charlotte, and I was working as a health reporter for a local TV station. And later we were on the board of our local JDRF chapter together. I cannot believe it has taken me this long to share Jeannes story. She is just incredible. I was able to talk to Jeanne and Jessica, about living well with type one for 66 years. Jeanne and Jessica, thank you so much for joining me. I've known Jessica for so long, but I don't know so much of this story. I'm so excited to talk to you both. Thanks for coming on.

Jeanne & Jessica  6:17

Thank you for having us. You're very welcome.

Stacey Simms  6:20

Jeanne, I got to start with you. Because you have lived with type 1 diabetes now for more than 65 years. Let me just start out by saying How are you? How are you doing?

Jeanne Martin  6:30

I'm doing great. I think I'm doing just fine.

Stacey Simms  6:35

What do you mind if I ask what technology you use how you manage anything you'd like to share?

Jeanne Martin  6:40

Well, I checked my blood sugar with little contrast test strips. And I shoot nice. Well, I take shots

Stacey Simms  6:49

you can say brands, we’re all friends here.

Jeanne Martin  6:51

Yeah, I say I shoot myself

four times a day. I see my doctor every six months. Well, that's about it.

Jessica Graham  7:01

She does not use a pump or

Stacey Simms  7:04

any of that. No, if you don't mind, let's go back. Do you remember what it was like when you were diagnosed? You were 10 years old. Do you remember anything about that time?

Jeanne Martin  7:13

Oh, yes, I do very much. We lived in a very small town, not far from the Mayo Clinic. We just lived there a couple years. My friend's mother mentioned to my mother that I was drinking a lot of water and going in the bathroom a lot and she thought maybe my mother should have me checked out. So we did in the small town with the with the doctor there said, Well, she's either got diabetes or TB. Well, I didn't know what diabetes was. And I knew what TB was. So I thought, Oh, please don't i don't want TB. I'll have the other and so so the little basically country doctor didn't know what to do. So anyway, so they sent me to St. Mary's, which is public Have the Mayo Clinic. And they tested me and for sure that's what I had. So I had to stay there. I think it was five years. I didn't do all this stuff with the diets. And they wouldn't let me leave until I could get myself a shot. But I was active. And I don't really remember too much about it. The doctor were very nice, and everybody was very helpful. And back then you had glass syringes and needles and you couldn't check your blood sugar. You had to pee on the stick, and they sent me home and my mother had to weigh everything, and I had to watch what I ate. But other than that, that's about it. Then I just basically went on with my life. Did you

Stacey Simms  8:46

really? Were you able to jump back in go to school, do all the things you wanted to do with that time?

Jeanne Martin  8:51

Yeah, I did.

Stacey Simms  8:52

Mm hmm. It seems like such a different time, right. I'm just trying to think,

Jeanne Martin  8:55

Oh, yeah, it was a very different time and when I first got married, Remember, I had to boil my syringe once a week, we had to do that. And I was still peeing on a stick. And I only had one shot a day back then all through, you know, school. And of course, I didn't want to tell my friends when I was in high school. That's what I had. But of course, my mother told my best friend's mother. So everybody knew it, but I didn't know they knew it. Oh, wow.

Stacey Simms  9:25

Anyway, moms are sneaky that way. But yeah. The you know, the regimen was so different. You had one shot a day, right? And then you had to kind of eat around that shot. Did you have problems as a teenager? Did you do remember, you know, any issues or were you able to buy I would assume by routine and by figuring out what to eat, you know, how did it work out for you?

Jeanne Martin  9:47

Well, I didn't run into any problems when I was a teenager. And I do remember I don't know how I would go not very often, my friends and I and I would have hot fudge sundaes. Believe it But other than being bad like that, I lived at home and my mother, kind of watch what I ate. And I didn't need a lot of sweets. You know, it was my mother's management, not mine. And I came home for lunch all during school. And I didn't start taking more shots until about, oh, I don't know, maybe 45 40 years ago.

Stacey Simms  10:23

Yeah. It's so different to think about because we're talking about I mean, if doing my math correctly, you were diagnosed right? In the early 50s 1950s.

Jeanne Martin  10:30

Right? And 1955

Stacey Simms  10:33

Yes, so the routine was completely different. I mean, as you're listening, you got to understand not only one shot a day, but no blood sugar home meters, right. You're still checking. How often did you check done by check? We mean, pee on the stick.

Jeanne Martin  10:50

I probably did it maybe once a day. I honestly don't remember that. Not a lot. It's very different now. And somehow, I think my pancreas has always worked a little bit because I don't take much insulin. And I'm very, I don't want to say touchy with it, but I don't have to take a lot. And when I was diagnosed at the Mayo Clinic, they said that yes, my pancreas was working a little bit. That's what they thought. And I still think that's the case because I just don't need much insulin. And and I watch what I eat. I do, but you know, I'm not 100% I mean, I do have cookies,

Stacey Simms  11:30

but you're told us you were eating hot fudge sundae. So the cat is out of the bag…

Jeanne Martin  11:35

That was in my youth. You know, I do take care of myself. Now. I check myself four times a day, shoot up four times a day and I watch myself better now because I know better. I'm more wiser.

Stacey Simms  11:48

I'm curious to growing up. Did you know anybody with Type One Diabetes and if not, when did you meet somebody with no,

Jeanne Martin  11:55

I never knew anybody. I didn't know anybody with any kind of diabetes. It wasn't in my family, so none of my relatives had it. No, during high school I did not know, as an adult. I have met very few type one diabetics, I know they're out there, but very few. And it's kind of fun when I do just to kind of say, Well, you know, compare notes, so to speak. Sure.

Stacey Simms  12:21

Just let me ask you a couple of questions. Because the perspective of a kid, you know, we're all adults now. But a child growing up with type one in the house and the type one is in the parent is not something that I've talked a lot about on the podcast. What's your earliest memory of your mom and diabetes?

Jessica Graham  12:38

Well, I don't ever remember it not being there. And that was more because I worried about her than it was her. There was never literally and I'm, I mean, this literally, there was never a day when my mom said, Oh, I don't feel well or Oh me, you know. My sugar is off, or I just don't feel good today, never. And so it was nothing that she did. I just knew that if mom started acting funny, I needed to get the orange juice. So I remember that I never had a problem with shots. And I think that's because I always saw you give yourself a shot. So it was just, it was always there. The other thing that I remember is that I was always told that it skipped generations. And so I do remember I don't even know if you remember this. But I remember at one point when I was little, I told mom that I didn't want to have kids until there was a cure, because I didn't want my kid to have type one. And I she got really mad. My mom never got mad. But she got upset at that and told me that was absolutely you know, the wrong attitude to have and that she had a great life and it didn't have any impact. And so that was the end of that but it was just always there. So just always a part of life. Jeanne, I'd love to hear your perspective. On when Jessica who now has a I want to say a tween a teenage Yeah, yeah. just turned 13 Yeah. Wow.

Stacey Simms  14:07

I want to hear your reaction Jeanne to when she said that!

Right back to Jeanne answering that question but first Diabetes Connections is brought to you by Real Good Foods. True story from my house. Benny came downstairs the other night, open the freezer door, looked in it close the door and said who ate the mint chocolate chip ice cream. And I had to say it was the I finished it off. Sorry, Benny. But they're Real Good Foods. Ice cream is really good. We had a vanilla chocolate and mint chip this last time I promised him I would buy more and I have to get the peanut butter kind as well. We haven't found the ice cream yet in our grocery store freezer so I get that online but our grocery store carries a lot of the meals and they are so good and super easy and basically just heat them up. If you have an air fryer. It's even better They have everything from pizza to breakfast sandwiches to bowls, these new bowl meals that are really nice entrees. Find out more, check out that mint chocolate chip ice cream for yourself. It stays frozen. They they package it up the right way. I was worried about that, but no need to worry should have known. Just go to Diabetes connections.com and click on the Real Good Foods logo.

Now back to Jeanne answering my question about her reaction. When Jessica told her she was really concerned about having children.

Jeanne Martin  15:33

Well, I didn't want her to dwell on it. And I didn't want her not to have kids. You know, it's so much more advanced nowadays. And there's so much more that they can do. And I always do hope for here. I mean, I've been hanging on that for a long time, but you never know, one of these days. No matter what your problem is. You just have to get along and do the best you can and get along with your life and not dwell on it. And I've never dwelled on it.

Stacey Simms  16:02

Well, I'm curious too, because now we know and I've heard that too. it skips generations. We know it absolutely does not. But I'm curious Jeanne, you know, when you decided that you wanted to have children? Did anybody try to talk you out of it? This was a very different time for diabetes.

Jeanne Martin  16:14

Well, I was told that I would have a hard time having a child. And so we put up for adoption. And we were waiting to hear and I went to the doctor and thought I had a tumor but the tumor was Jessica. So I thought, okay, so we said, you know, we were going to have a baby so we don't need to adopt and they said, Well, why don't you wait to see if everything is okay. And I said, okay, because the doctors told me that Jessica only had a 40% chance of being born alive. So we waited and she was screaming and kickin, so she was Fine. So we stopped the adoption because we didn't need two babies at one time. And I didn't see her for I think it was like two or three days. She was in an incubator because her blood sugar was low when she was born, but then after that, she was fine. And I was fine. And that's it.

Stacey Simms  17:19

I'm sorry. I'm still on the tumor.

Jessica Graham  17:24

Well, and I'll add to that, because, you know, she won't tell you this part, but because she was diabetic, she couldn't have any medicine or or painkillers. When I was born, and you were in labor, what, 24 hours? No, no,

Jeanne Martin  17:39

it was, I don't remember 13 hours. So it was a

Jessica Graham  17:42

ridiculously long and I was stuck behind a piece of cartilage. And so I wasn't coming out. So she went through hell delivering me. But it all worked out. Yeah.

Stacey Simms  17:54

Oh, worked out. things really have changed. I mean,

Jeanne Martin  17:58

Oh, yes. And I also was I would not live to see my child grow up. Now I've got a 13 year old grandson.

Stacey Simms  18:07

But let's talk about that, because I've heard that from so many people diagnosed not only in the 50s, but even as late as like the 70s and 80s. This Doomsday of you're not going to live past 30. And I know that for many people, that unfortunately was the case, there was not the care. There was not, you know, whatever they needed, but it seemed as though in some ways, the doctors, I don't know, I don't want to editorialize here, but they seem to have this Doomsday approach. And when you were told that Jeanne, what was your reaction? I mean, I think a lot of people would have said, well, what's the point? Oh,

Jeanne Martin  18:37

I'm kind of stubborn.

And my reaction was, I told my husband, that guy can go walk out in the street and get hit by a bus tomorrow, and I just, I'm not going to go along with that. That's was my reaction. I got mad and he did die. A younger The age that I am now is a matter of fact, the guy that told me that I didn't buy into it. I didn't get depressed because I just thought it was full of baloney. I love it.

Stacey Simms  19:10

All right, this is getting interesting now. I do love it. Jessica. I know your mom is sitting right there. But you're doing great Jeanne, obviously with with your shots and with your checking, but the technology has advanced. I'm going to assume, Jessica, that you guys have had a lot of discussions about this. And your mom has said no. And you're respecting that don't put words in your mouth. But I'm curious how have those conversations happened?

Jessica Graham  19:36

Oh, yes. And I don't mind saying it with her sitting right here. So I don't mind that she doesn't do the pump because I understand. I mean, she's had incredible control for 60 some years and so i don't i don't blame her that but I want her to have a blood sugar monitor because she tends to go away Low, and she goes low at night. And it's been a problem as I call it a problem. Whenever she goes low it to me it's a problem. And so while she keeps great control, and I mean, it's her life, right, and it's her decision to make, I wish that she would get some of that electronic help with the monitoring of it. So yeah, we have that conversation a lot. But I lose.

Stacey Simms  20:26

That's a difficult situation. You know, we, as parents of children with type one have these conversations, especially once there were certain age, and I'm going to say, as young as four or five years old, where it really has to be up to the person to buy into it and say, Yes, I want this technology. And I would imagine and I'm just imagining having this conversation with my mother, who I think you have a lot in common with with Jeanne. And I think it would go that well. Yeah, well stubborn, but also you're doing very well.

Jessica Graham  20:52

Yeah, and Exactly. That's why I mean at the end of the day, what am I going to do right now I can only put in my two cents but that that is is the one thing that I wish you would do. And my dad to his credit. I mean, he's kind of grown up with this too, right? And so he's a great monitor strangely, he knows when it's the middle of the night and she's having a hard time. But I don't like to rely on that.

Unknown Speaker  21:17

But again, I lose

Jeanne Martin  21:19

stubborn. Well, let me cut in here. But the doctor prescribed a new kind of insulin that I've been taking. I don't know six months now and I have not had any trouble at night. Oh, good.

Stacey Simms  21:32

We don't have to use it in the show. Are you taking Tresiba?

Jeanne Martin  21:34

It's Tresiba. Yeah. And I have not had any trouble at night. Since I've been on that. Yeah, that's a good thing.

Stacey Simms  21:41

But my son uses an insulin pump. But long story short, we had him on Tresiba with the pump for a while because teenagers use the most ungodly amount of insulin that you could imagine. He's coming out of it. So we did away with the trusty bow, but boy, it's like the best long acting we've ever used. I'm curious too, and the bridge kind of skipping around chronologically. Hear but I mentioned earlier that there were not blood sugar meters for home use when you were diagnosed. Do you remember when you started using one of those maybe the 80s

Jeanne Martin  22:09

Well, I thought it was great because then I really knew what was going on. I mean it just it was very helpful because and that's why I checked myself a lot because you can't guess how much it's I mean, you can guess kind of how much insulin but you really can't without knowing what your blood sugar is to my mind. I mean, I think that's what's helped me keep control in Yeah, I don't like to stick my fingers but I mean, I'm so used to it now just comes second hand to me, so it made a big difference. What really made a big difference to is having plastic syringes that don't have to boil. Tell me

Stacey Simms  22:49

more about that. When did that switch? Not Not Not necessarily like what year but tell me more about that. What do you remember kind of the transition? Did you just one day throw all the glass ones out? What happened? Right

Jeanne Martin  23:00

Yeah, I did. I guess the doctor told me that these were available. And so I bought them and and use them. And then you know, he used it, throw it out. And it just, it made a big difference. It's just like, oh, gosh, you know, this is getting easier. Well, and you know, it was a lot easier. I mean, it sounds like a small thing, but it was a no to boil, you know, syringes once a week and needles once a week. And so this was great.

Jessica Graham  23:28

When did you I don't remember you ever boiling? Was that in the 60s or

Jeanne Martin  23:32

70s? No. Well, I must know. I don't think when you were born. Other times, I must have used the plastic ones. Yeah. Because I don't remember doing that either. When you were born.

Stacey Simms  23:43

You know, Jeanne, it's interesting. You said it seems like a little thing. I think for someone who has my perspective. My son was diagnosed in 2006. When we basically have I think we have all of the technology. At least it was on the drawing board if not available at the time. It wasn't as good as it is now. Just 1314 years later, but it was there. And so to think about transitioning from peeing on a stick to a blood sugar, meter glass syringes, to plastic syringes, these are monumental changes. I don't think it was a little thing. I can't imagine how much of a difference that made. I mean, the needles had to even feel different. They were more comfortable, I assume.

Jeanne Martin  24:20

Oh, well, it was it was like one size needle with the glass syringes, and they weren't that small. And now, you know, you can get all different kinds of sizes. Jessica, do you remember growing up?

Stacey Simms  24:32

It sounds like your mom's diabetes was not front and center, as I'm sure she would not have wanted it. But are there any things that stand out? You know, when you were a teenager? I'm trying to think his parents are just super embarrassing to begin with?

Jessica Graham  24:44

Honestly, no, because it just my mom wouldn't let it be the center. I mean, you're absolutely right about that. She she would never have wanted that. And I don't remember there being anything that happened when I was a teenager. That was odd. She She had one episode. I guess I was a teenager when you broke your ankle. She was we discovered that she couldn't drink champagne. She had a glass of champagne. I mean, literally a glass and the next morning passed out and broke her ankle because it messed up her blood sugar so badly that I don't remember anything ever. Embarrassing or weird or no, not not at all again, I I remember when I was a younger teenager, like if you started acting strangely, I needed to get you orange juice like I vaguely remember that but and that went for anybody. Like I think if anybody started acting strangely, I would have ended them. Shoes. But

Stacey Simms  25:43

1. Jeanne, did you have a career did you work? Did you work at home? Tell me a little bit about what you you know what you did?

Jeanne Martin  25:49

You know, I work during high school, I worked at clothing stores and I worked at a bakery. And then after school, I worked at a real The state office. And I guess that was it because it was the board of realtors, because I had to quit them when I got pregnant with Jessica. So that was it. And then when my husband started his company, I worked for him. I did the payroll and things like that.

Stacey Simms  26:19

Jessica, what led you to JDRF? I mean, we had met Previous to that, but we connected again at the Charlotte chapter.

Jessica Graham  26:25

I led community outreach for Harris Teeter, but didn't formally get involved. They were supportive of JDRF, but didn't formally get involved in a board capacity until I got to Time Warner Cable, and they were also involved with JDRF. And so I joined the board at that point, and was on the board for, I don't know, six or seven years, I think, and shared it in there. But I think I knew about JDRF through mom, like I think you just always supported them. Yeah, um, if I'm not mistaken, the world. organization was born the year I was born. Just another thing that has always been a part of my life. And I was really excited to get involved with the chapter because yeah, as you sort of already mentioned, the parents of type one diabetics are really involved. But there really aren't many children of type ones out there. There weren't at the time. It meant a lot to me to be involved and to be part of it.

Stacey Simms  27:24

I'm just curious, your mom, Jeanne, you just seem so laid back. And I've talked to several people who have lived with diabetes for this long who are I want to say relax, because obviously you're not, but who are more of the, hey, I'm taking care of it. We don't need to talk about it. You know, I'm not surrounded by people with type one. And then there are people who are younger, or we've been diagnosed more recently, who are really a big, big, big part of that community and want and need to kind of breathe that air. And I was curious, Jessica, was it surprising for you to kind of be involved in JDRF and be around people who were more like well, I am talking about every day and I am going to tell you more about it.

Jessica Graham  27:58

Yeah, I mean, it was it was definitely Different, because that's just not how it was in my house. I mean, it wasn't a big secret or anything. But Mom definitely didn't advertise it. And it certainly wasn't part of her identity. It was very, very different. And I really loved to one be involved that I really loved getting my mom in that community, like I would take her to the gala and that kind of thing. And she really is such an inspiration to a lot of people, especially those who are newly diagnosed because they can see somebody who really, I mean, has had a full, long, wonderful life with it. And so it's not this Doomsday message. And so she's really, I think, a real inspiration for that. And I think too, she's a great inspiration for how important attitude is an outlook is because she's never let it define her and she's never really Let it limit her. And I think she's really inspirational. So yes, it was very different to be around different people with it. But also it was really exciting to just to be able to share her with that community.

Stacey Simms  29:12

Jeanne, what's your reaction to have your daughter sitting next to you and saying, what an inspiration she thinks you are?

Jeanne Martin  29:17

Well, I think that's very nice. It's very complimentary. I never thought of myself that way. But I'm glad she sees me that way.

Stacey Simms  29:26

I know my listeners are going to want to know, a few more little details. Jeanne, do you exercise a lot? Have you always been active? Are you more kind of laid back about that too? You know, that's one of the things that people always ask me about.

Jeanne Martin  29:37

No, I say I'm pretty active. Well, since we've lived here almost the whole time. I would go to the why three days a week. I don't do that now because I suppose and when I was younger, I played golf, and did a little bit of tennis. I've always gardened Well, not always but for a long time I went out in the They are dug in the dirt and that type of thing. And I try to walk about a mile a day. I mean, I walk more, but I go for a mile walk, or more. I tried to do it every day, unless it rains. I do it early when it's hot, because the heat affects my blood sugar. I run into trouble easier. And I don't know if that's the same with other people. But anyway, that's what it is. Yeah, I think I'm pretty active.

Stacey Simms  30:27

Yeah, you're very active. Jessica, I'm curious, have you. You mentioned that you were worried about your son having type one and he's 13. Now, do you still think about that? It's in the back of your mind. Is it something that you've ever had checked out? Anything like that?

Jessica Graham  30:41

Um, yes. So I worry about it every day. But I don't

I try not to think about it. And I certainly have never mentioned it and

Unknown Speaker  30:49

we had

Jessica Graham  30:50

it chat once and I forget why you've charged it. Yeah, maybe. Maybe you were the one anyway. I feel like I had it checked once and I don't remember why maybe he was thirsty that day. But I do worry about it a lot. And I mean, literally every time he says I'm thirsty, because I'm just a little neurotic that way, but I don't talk about it at all. Like he would have no

Unknown Speaker  31:14

idea. I don't

Jessica Graham  31:16

think anybody would know that. But yeah, I worry about it a lot. But then again, I think, well, if he ever were to develop it, oh, my gosh, he has the world's greatest teacher to help him navigate it. So that puts my mind at ease. When he was very, very small. I found a test that he could have done. It might have even been when he was born. I mean, it was he was really, really young. And I think it was down in Florida, talking about TrialNet Yes, that must be what it was. And we just decided

Stacey Simms  31:49

not to do that. And I think I talked to you about it and talked to my mom about it. And she, I think suggested that we not do it and I decided not to so Well, Jeanne, let me then ask you about that because you would, as Jessica said, you know, he would have such a great role model and teacher, God forbid something would happen like that. So let me just ask you, what would your advice be for a newly diagnosed adult or a newly diagnosed family facing something like this now in in 20?

Jeanne Martin  32:19

Well, it depends the age of the kid. I think when you're a teenager, I think it is be harder on the kid because, you know, you don't want to be and maybe it's because I'm a girl and maybe it's back then you don't want to be different. I mean, you know, you want to blend in as a teenager, you don't really have enough self confidence to just say, Okay, I've got this and I'm gonna deal with it. I mean, I'm not saying that kids don't but I would think that's a harder age. But I guess I would just be very positive and all the things that can help. At the same time, it was would be your his responsibility to see He does try to do what he should do with diet and exercise and taking this medicine. I have a niece who came down with it when she was 10. And she never did well with it. She didn't do what she was supposed to do. And over the years, she's had all kinds of complications. And she just got very depressed with it. And you have to be positive. But you the kid himself, has to take responsibility for himself to do what he should do. And I strongly believe in that.

Stacey Simms  33:36

Thank you both so much for joining me today. It was amazing to learn about your story, Jeanne, and I'm so glad, Jessica that we were able to do this. Thank you for being on the podcast.

Jeanne Martin  33:45

Thank you for having us. Yes, thank you. It was nice meeting you via the computer.

Announcer  33:55

You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms  34:01

I shared some photos in the Facebook group that Jeanne and Jessica sent me, I was so happy to finally get a chance to talk to her. And you know what, after that interview, she sent me an email with some advice for Benny, which I thought was really, really nice. Now he is, as you've heard him here on the show, he maybe he's a little too confident, but he's very independent and very confident. But Jeanne has some really nice words just about you know, not letting diabetes stop you and keeping a good attitude that has served her well. And I really appreciate that she took the time to do that this community is just great.

All right, innovations is up next. And we have a very low tech solution to a very scary problem. It has to do with rubber bands. All right. I'll explain that in just a moment. Diabetes Connections is brought to you by Dexcom. And we started with Dexcom back in the olden days before share. So trust me when I say using share and follow apps make a big difference. I made a lot of people who don't realize that when Dexcom launched you could not see numbers not only on your phone, but you could not share than with anybody else. But now it's such a great system. And Benny and I set parameters about when I'm going to text him or you know how long to wait all that it helps us talk and worry about diabetes less when he is at asleep over or goes on a trip. It gives me peace of mind. It also helps if I need to troubleshoot with him, because I can see what's happening over the last 24 hours and not just one moment. The alerts and alarms that we set help us from keeping the highs from getting too high and help us jump on lows before they're a big issue. Internet connectivity is required to access separate Dexcom follow app. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

As you know I am the queen of diabetes mistakes I wrote a whole book about why I think mistakes are great. It's the world's worst diabetes mom real life stories of raising a child with type one. But I will say that making mistakes is also incredibly scary at times. And the one mistake that I think almost everybody with time wonder who's a caregiver for someone with type one has made is mixing up the long acting and the short acting when you're on MDI, whether it's the beginning or you've been doing this for a while, I've been enough Facebook groups where I see this happening. It's once in a blue moon for the individual. But it seems like almost every week somebody is coming in and saying, Oh, my gosh, I did this. I'm so scared. What do I do? Right? Well, one of the best tips I ever heard on is so simple. And I heard it from a CDE.

And I'm so embarrassed that I don't know their name. And I'm so sorry, if this was you, email me Stacey at Diabetes connections.com. And I will give you credit, but what you do is this, whenever you have a new vial or a new pen, have long acting and do this on the long acting only take a rubber band and wrap it around the pen or the vial. Just wrap it around a couple times. You know, make sure it's not loose, it's not sliding around. And then every time you pick up your long acting, you will know that it feels different. It's got those rubber band bumps on it and If you do this often enough, really doesn't take that long, maybe two weeks, your fingers will start to associate that feel with the long acting. So if you make a mistake if you accidentally grab the wrong pen, your hand and your brain will instinctively know that something is wrong. Now, this is not proven. I haven't seen any studies on it. But this is advice that was given to me that I've heard other people use. And it really does make sense.

It is incredible that after all this time was different kinds of insulin, that the pens are pretty much exactly the same. The Lantus vial, I remember might be a little skinnier, right? It looks a little bit different. But when you're moving quickly and automated, like a lot of us are, I mean, I could do that Tandem cartridge in my sleep, whereas when we first got it, I thought, oh my god, this is so complicated. I've got to lay everything out on the table. We did the Animas pump for 10 years, I could definitely feel that thing blindfolded. You just get used to your routine and how things are Feel so if you just wrap the rubber band around the long acting, you will get used to the feel of it.

Let me know what you think. Does that make sense to you? Has anybody tried that? And if you've got an innovation like that This segment is for everything big and small. That makes living with type one just a little bit easier. Let me know I would love to hear from you.

Just a little personal update before I let you go, this has to do with insurance. We've had some employment situation changes around my house, which means I have already spent far too much time on the phone. I decided to start taking advice from one of our previous guests from Melissa Lee, who said when you have insurance issues, you should start with the diabetes companies and work backward. So I called Dexcom and Tandem and I said hello, I have changed insurance. What do I need to do? And they were very helpful. The bad news is my new insurance means we have to order from a third party supplier and it's Edgepark. Edgepark. If you're listening, please, please handle this.

Well, we were with Edgepark years ago and I hate to disparage anybody. But let's just say let's turn this into a positive. I felt that it was such a gift for the last five and a half years to order directly from Tandem and directly from Dexcom. I am sad to see those days in my rear view mirror. So I will keep you posted on how it goes. I'm currently as I'm recording in the limbo of an Edgepark representative, we'll get back to you. We have plenty of supplies. I have a great support system if I need anything, so I'm not worried about Benny. But man, although I'm a liar, because I did say to him, you know, before you rip anything off your body, so bad before you take off that sensor or that inset, come talk to me, and make sure that it's okay to do so. Isn't that terrible? I mean, I'm laughing because we really are fine. But it just makes me crazy how expensive this stuff is, and how difficult the process is to order what you need. So I will keep you posted on that. Hopefully, it'll all go smoothly. But this is not my first rodeo. So I'm anticipating navigating a not so smooth road. I'll let you know.

Thank you so much to my editor, John Bukenas from audio editing solutions. Thank you all so much as you listen, I'm Stacey Simms. I'll see you back here. Next Until then be kind to yourself.

Benny  41:07

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