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Diabetes Connections with Stacey Simms Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Now displaying: November, 2020
Nov 24, 2020

Clinical trials are incredibly important for research, but the people who take part don't usually get to meet anyone they've helped.  Marty & Alecia are a very special exception!
Marty Drilling took part in a clinical trial in 1974 that later helped save Alecia Wesner’s eyesight! We’ll share their remarkable story and talk about how much progress has been made in treating diabetes eye issues.

Join the Diabetes Connections Facebook Group!
In Innovations this week.. a new partnership in the closed loop space. We'll talk about Lilly and Ypsomed

Check out Stacey's new book: The World's Worst Diabetes Mom!
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 HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, taking part in a clinical trial is incredibly important, but it's often thankless you don't expect to meet the people you might help years later. That's why it was remarkable when Alecia met Marty,

 

Alecia Wesner  0:40

the people who tested that technology, I'll never meet them and tell them but you know, you're some that I can still see or the reason I have the strap is the reason that I do all of these things. And my doctor had told me that most of them, you know, they either left or didn't or they lost their life

 

Marty Drilling  0:56

while she was moved because I was still alive and she'd been told we all died. I was just moved to St. meet somebody who had benefited and certainly appreciated.

 

Stacey Simms  1:06

Marty Drilling took part in a clinical trial in 1974 that later helped save Alecia Westerners eyesight will share their story and talk about how much progress has been made in treating diabetes eye issues.

In innovations this week, a new partnership in the closed loop space could bring a new pump to the US market.

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. If you're listening as this airs, it is Thanksgiving week here in the US probably a Thanksgiving, like none other for many of us, but I hope you are staying healthy and safe. Of course on the show, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son Benny was diagnosed with type one right before he turned two, and he is almost 16 years old. This episode I think is a really nice one for Thanksgiving. It gave me a lot to be thankful for specifically, the amazing people in the diabetes community who lived through very different times, and went through these clinical trials to make things better for people that they assumed they would never meet. It's also a really great Thanksgiving story, because it's just one of these heartwarming, yeah, I got to admit, Alecia made me cry. Oh, my goodness, it was a wonderful story.

So I'm really glad you're here, we also have some really good information about not just taking care of your eyes, but complications that can happen, what you can do about them and the progress that has been made. So if this is something that you have been worried about, I just saw a Facebook post from a young woman in her 20s with something very similar to what Alecia went through. I think this will give you a lot of hope. And some ways to take action.

Quick reminder, my book, the world's worst diabetes mom is on sale through the end of this month, I think it makes a great holiday gift, you kinda have to sort of know who you're buying it for. You know, make sure if you're getting it for your mom, or your wife, that you let them know that you don't think they're the worst that It's me who's the worst, I could see how that could go kind of wrong, but just go to Diabetes connections.com. And you will see the book, scroll down a little bit. There's also a tiny little shop button at the very top, but the promo code is “November.” And that'll take $4 off through the end of this month. And that is plenty of time to ship it to you for the holidays. And I will sign it if you buy it off my website. I can't sign it if you buy it off of Amazon but it is there in paperback ebook and audiobook,

okay to Marty and Alecia in just a moment. But first 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's the sleekest 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 health care team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention their awesome test strip 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 guests this week were diagnosed a generation apart, but boy are they peas in a pod. I think Alecia even says that. Alecia Wesner was diagnosed in 1979 when she was six Marty Drilling was diagnosed at the age of four in 1953. I asked them to come on the show because back in October, I saw a Facebook post from Alecia talking about her virtual JDRF bike ride and here is what she said.

“Today I ride to honor my friend Marty one of the original clinical trial patients of laser eye treatments for diabetic retinopathy He is one of the reasons I have my vision after many years of laser treatments in my 20s and early 30s. Thank you, Marty.”

I had to find out the story behind this. So I called them up and brought them on. Quick note before we jump in, we are going to talk a little bit in this interview about eyes and eye surgery. I don't know about you, I'm really squeamish. Even though I've had LASIK, I have my own eye issues. If that is you, I promise I will jump back in with a quick heads up, I will warn you and let you skip ahead over that stuff if you prefer. And keep in mind we get to this late in the interview. But you should know upfront treatments have changed significantly from what Marty and even Alecia went through. So this is went through. So if this is something you need, this is an interview that should encourage you. It shouldn't scare you.

Alecia. Marty, thank you so much for jumping on and sharing your stories today. I appreciate you being here. Thanks so much.

 

Marty Drilling  5:54

You're more than welcome.

 

Alecia Wesner  5:55

Thank you for having us.

 

Stacey Simms  5:56

I admit, I don't know much more about either one of you than the Facebook post Alecia put out not too long ago, and I thought I gotta talk to these people. So well, you know, we'll get to that we'll talk about clinical trials and how you two met. But first, let me just set the stage a little bit. If you don't mind. Alecia, can you start by just telling us your diabetes story. You know, when were you diagnosed?

 

Alecia Wesner  6:20

I was diagnosed in 1979. So I had type one for 41 years. I have, like you said been in a lot of clinical trials over the last six to seven years of my life, mostly in the AP space. And I live in New York City. I'm very active with JDRF. I'm a JDRF rider. And I've written many, many miles on a bike.

 

Stacey Simms  6:44

And when you say AP You mean the artificial pancreas trials. Yes. And Marty, What's your story?

 

Marty Drilling  6:49

Well, I was four and a half when I was diagnosed in 1953. So I've been living successfully with my diabetes for 67 years. My math is correct. And my first clinical study was the one that Alecia and I bonded over was my 1974. When I was in my final year of law school, I finally went to the Joslin clinic in Boston, and they said you've got you're going to go blind if you don't do anything. And they had the new laser surgery study going on through the NIH. So I was one of the original guinea pigs in that, and fortunately proved to be very successful. And I still have my vision 40 some odd years later. And when Alecia and I first met, which was just about a year ago, it was at a advocacy day on the hill in Washington DC. And I happen to mention I was a participant in that study. And Alecia immediately reacted, I had that too.

And then Alecia, pick up the story from there because it was pretty amazing.

 

Alecia Wesner  8:03

Yeah, please no Marty is downplaying this. So Marty and I, we spent an entire day together. And we're like two peas in a pod. And really like wooed each other side through this whole day through Washington running around and talking about diabetes and life. And one of the things that we talked a lot about Marty's destiny, a lot of questions about the 80 trials that I was participating in, and different pumps. So what I hadn't asked Marty was more of his diabetes story. So we were at Elizabeth Warren's office. And Marty ended up telling the story about his life of diabetes, but specifically about being in trials for retinopathy. And I got totally choked up, which I have now. I'm sorry. But in listening to him, I have spent a lot of my adult life advocating for clinical trials and clinical trial participation. And one of the things you know, I get to be on the stage and tell people about this is my experience. And that's why we need to push these things forward. But one of the things I always show are pictures of my eyes because I was diagnosed with retinopathy in my 20s, which was terrifying.

I work in a visual field and rubbed my eye one day, I noticed that the graph paper I was looking at was waves and not straight. And I'd seen doctors have my eyes checked every year. And they had said they were starting to see something but it didn't really panic me until I saw it myself. I saw a doctor who said you have two options. And one is we keep doing laser and the other was a very aggressive form of laser that was new. And I went, you know, 24 years old. I went with the aggressive ones, but long story not short, was that one of the things I always talk about for why I participate in clinical trials is that I will never have the opportunity to thank the people who kept my eyesight, the people who tested that technology. I'll never meet them. Tell them, but you know, your son that I can still see, or the reason I have to struggle is the reason that I do all of these things. And my doctor had told me that most of them, you know, they either lost their vision or they lost their life. And many of them were gone. So I just assumed everybody was, for lack of a better word dead. And so Marty telling the story, I just lost it. And it was, this was my friend for an entire day, we lunch together, like we have this whole day of bonding. And all of a sudden, like all these people, I've always wanted to think through the person. Oh, nice, good. So I was a mess. So there is a picture of us that I took, because I am really into like capturing the moment in which I am we are both crying outside Elizabeth Warren, about the fact that like this is, there's no more important moment to me than this moment. So yeah, so that is how we are friends. So I'm sorry, Marty. Your version of this story,

 

Stacey Simms  10:55

I'm upset with both of you now. Because I think I have cried twice on this podcast in five years.

And you've, you've just done it again. And it takes a lot. But I think because and I'm not gonna, this is about you guys. But I think when you have a child diagnosed so young, and you have to jump in and take care and do all this stuff. And plus, I've worked with information for so long, my whole career has been in news. I hate to put it this way, but you kind of harden your heart. But at the same time, I'm with you, Alecia, I think all the time about the people that have done so much to make my son's life better. And to meet somebody like that in the circumstances in which you met Marty. Yeah, no. And so Marty, let's swing over to you. And don't brush it off. I know you're gonna try. But what was going through your head, when you looked over at Alecia and realized her reaction,

 

Marty Drilling  11:47

as I said to Alecia, I was really moved, because this is the first time I had ever really met somebody and talk to somebody who had benefited from my laser treatment, I experimentation. And it moves me just realize in specifically that as a result of my efforts, and many others, we should still had benefit. And I knew that in general terms, but I really had never talked to anybody who had benefited from that. So while she was moved, because I'm still I was still alive. And she'd been told we all die. I was just moved to say, to meet somebody who had benefited and certainly appreciated.

 

Stacey Simms  12:34

So if you don't mind, let me ask some details. And I always say look, if this gets too personal, you know, we'll move on. But I'm very curious if you don't mind, Alecia, what happens? So when you're treated like this? Does it go away after a while and you're fine. Now? Do you have to continue treatment would you mind kind of sharing what you went through?

 

Right back to Alecia in just a moment. But first diabetes Connections is brought to you by Gvoke HypoPen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Jeeva 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, you push the yellow end onto bare skin and hold it for five seconds. That's it, find out more, go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvokeglucagon.com slash risk. Now back to Alecia talking about her issues with her vision and what she was able to do.

 

Alecia Wesner  13:51

Yeah, absolutely. Well, I know that my situation is could be different than somebody else's. But for me, I was in my 20s this was, you know, certainly a wake up call of my own diabetes care and maybe I could take it up a notch. And I had not been on a pump before that and decided that would give me tighter control but that this was the time to make this decision. Which I look back at which I think a lot of people who are on pump technology say the same thing, which is that they wish they had done it sooner. And I'm certainly in that boat, but I had aggressive laser for years. And I am extremely grateful to the Marty's of the world specifically Marty and also really, really great doctors. My vision is fine now I'm 47 years old. So I wear glasses because I'm old not because I because of anything diabetes related. I will say so so you're both of my eyes have been treated a lot. I have not had any laser in well over 15 years, which is great. And I just saw my doctor Recently, and he said, you know, your, your eyes have never looked better. And that's what he says, Every time I see him, that's a nice thing to hear, as somebody who, you know, I, my careers in lighting design, the irony of all of this and that it's lasers treating my eyes. It's always been interesting to me. So I asked a lot of questions at the doctor's office, and I, I get a copy of all of my scans, because I'd like to look at them. And I have them hanging in my office, because they kind of center me and they remind me that you know, life is short, and to be grateful for the things you have. So I guess to answer your question, My vision is fine. But if I close one eye or the other and look at graph paper, it's definitely distorted. But my eyes compensate for that together.

 

Stacey Simms  15:43

Wow. And Marty, I was kind of struck when we started this conversation, you said you did your first clinical trial in 1974, which is five years before Alecia was diagnosed, which is interesting to look at, would you mind taking us through a little bit of what your management was like, at that time? And, you know, just kind of talk a bit a little bit about what it was like, then?

 

Marty Drilling  16:05

Well, way back then, you know, you were told, and now you have to understand well, I have to take a step back. Sure. Back in 74, I was living in Boston, and I only went to the Joslin clinic, which, of course, is one of the pioneers in the study of diabetes in that year, when is my third year of law school. And I had never been to a specialist before. So what we did was what my parents said, cobbled together, because they were frequently told when I was first diagnosed, and they would call and say, Hey, listen, you said he shouldn't have a snack in the afternoon. But if I don't give it to him, he's going to pass out. And my mother often says that one of the once you would call the doctor's office, they would say Mrs. Drilling, you know more about treating diabetes than we do. So you just do what you think it's appropriate. And that was not an easy burden for my parents to bear. And I give them all the credit in the world, but we, you know, I stuck to what I can remember is I stuck to the basic, you know, I'd have no whatever I had for breakfast at that time, I would try to maintain a boring diet just so I could try to stay within some bounds of normality. And don't forget, we didn't have the meters until probably around that time. And so we were just testing our urine in the cup. And I always thought orange was the predominant color because it always came up white. As I told my mother is, you know, you have to live. So I would go out with the my friends and had a drink of beer too, and on weekends and whatever, but I was a student so I did a lot of studying in law schools that sort of helped me maintain some degree of normality and exercise. I was much more made probably because my blood sugar's were higher than but I could do a lot more exercise then because my blood sugar's didn't plummet, except on rare occasions. And fortunately, my friends could tell when I was, wasn't doing well and what helped me out, but it's

 

Stacey Simms  18:23

interesting you were and I know that some of us have a misconception of the like, the diabetes, Dark Ages that people were like, lying in bed or doing you weren't living life. And there you are. You went to college, you were in law school at this point. I mean, you found a way to make it work, even before blood sugar meters were at home and birthing.

 

Marty Drilling  18:41

It's not like I had a choice. And I am an eternal optimist. So I figured, hey, this is what I have to deal with it to deal with it, you move forward. And the whole idea is to enjoy your life not to sit there and moan and groan that you have, you know, an illness because everybody has something.

 

Stacey Simms  19:01

So when you found the clinic at the Joslin center, when you signed up for those clinical trials, how long did that last? Was it once and done? Did you continue to do that for years? Can you take us through a little bit of what those trials were like?

Okay, Remember when I said I would jump in? Here I am. If you are squeamish, skip ahead about two and a half, maybe three minutes. If you are really sensitive and don't want to hear any details of any eye surgery. I'm sorry, but to have to skip ahead about eight minutes when we switch to talking about Alecia's experience with artificial pancreas trials. But truly, two and a half to three minutes will take you through what I would consider the most sensitive stuff that's happening in this interview. The rest of it just makes reference to eye surgery and some procedures without anything that I would consider really sensitive. Okay, fair warning back to Marty.

 

Marty Drilling  19:50

Sure. first trial was in my left eye, and I think I told him we should this story but but when I went in there, it's like a Frankenstein movie because it was a very sparse room. It was just the Doctor coverall and his secretary and they put you either lie down on this metal table. And then he'd approach with the head to anesthetize my eye. And this is very primitive, as you can well imagine. And so he was approached with a needle that I thought was about 10 feet one to, you know, stabilized and anesthetize the eye so it wouldn't move. And then back then they had a huge light to make sure he could see where it was going. And he told me, we had the same brightness, as the lights, they used to light up the ocean when the astronauts were landing it at night, and then they just started zapping away. And that had to do that for three days in a row. And he said, You have to be very careful, you don't want to jostle your I, like put books under the top, where my head was under the bed, make sure my head wall was stayed above my heart. So after three days with the left guy, they, I would call back and see them, I think I was going back like every three months or so, it was a long time ago. And I don't always remember all the details. I had laser surgeries, I don't know how I lost track of the number of times I got zapped in both eyes. As the years went on, the improvements in the treatment went on. And so by the time the West laser treatment had, I had a I just had to put my eye up to the machine, resting my chin on the little bar there. And they could zap it right from there as opposed to having to any or they just would put drops in the eyes. So in terms of pain, it was much less painful and much less cumbersome.

 

Stacey Simms  21:49

Do you remember about when the last treatment was? I mean, are we talking a year later? 10 years later? I'm just trying to get a sense of that.

 

Marty Drilling  21:55

Yeah, it was well into the 80s. Because Don't forget I had, they had to make sure it worked in the left guy. And then I needed in my right eye as well. So yeah, I was, I see ABS would have been, I'm sure it was a waste into the 80s could have been in early 90s. And then I but I haven't had treatment for a while. I've had a couple of vitrectomy surgery because my vitreous was wrinkled in one eye. And but similar to what uh, we should just saw the last time I've been in with a number of years I've been in to see the doctor, they're very happy that it's stable. They have some issues with my right eye, which is my good eye. But they said it's stable, so we can just keep doing what you're doing. That's great. So how do you is?

 

Stacey Simms  22:42

I bet so how do you if you don't mind? Again, this is a little personal. But how is your day to day vision? I mean, we're all wearing reading glasses, as we just said, you know, that kind of stuff? You know? All right, exactly. No doubt. But how is that for you, Marty?

 

Marty Drilling  22:58

While my vision I can see, which is 90% of the battle. I try not to drive at night, because I have low vision impact. And the it's very difficult to see street read street signs and the lightbulbs get become stars as opposed to circular. So but other than that, I don't have any restrictions and reading once in a while I'll get a floaty but it has not impacted my quality of life to any significant degree. And since I enjoy walking, I don't mind walking around in to various restaurants or whatever that are nearby. Alecia, let

 

Stacey Simms  23:42

me ask you, people, including me, are a little squeamish. And I've had eye surgery and I've had eye issues. You know, I don't have diabetes, but I've had other issues. And it is one of the things that I think makes many of us very nervous to the point that I would be concerned that some people with diabetes or any condition would be scared enough not to want to seek treatment. Can you talk a little bit? I mean, look, you've already mentioned you've got like eyeball pictures in your office. So I'm not sure you're the best person to ask. Can you perhaps ease some fears about getting treatment for retinopathy?

 

Alecia Wesner  24:16

Well, I do think one thing that I should have made clear earlier, is that treatments have really changed since certainly since Marty had laser treatments and that I have had laser treatments. I mean, you know it from the diabetes perspective. Although lasers still one of the treatments, there are more options than there used to be. And I know for me, I think I'm pretty selective about my doctors. I've taken years to build up, like my dream team. I really like my doctor, I admire him, he saved my vision. So I think that helps a little bit to but also I think that you know these appointments, it's not like you're there for a month. It's one appointment, you do it once a year and then if you have a problem, you know Make your decisions on how you want to be treated. But the actual laser part of it, the types of things that I was having done, it's more the waiting, that is the harder part than the actual treatment, you know, you're, you have to keep your head still and your eyes being held open. And I guess for somebody who's like squeamish about their eyes, that might sound kind of freaky. But I would think you'd rather have your eye held open, then you'd be trying to do it yourself. So you know, it's just a matter of staying to bill. And I don't know if I will ever be good at meditating.

But I think the focusing on other aspects of life for something like that, I mean, it's no different than any other part of diabetes care, you know, some of it flat out sucks, but you know, that these are the steps that you take for, for your life to go on. And certainly for me with my eyes, you know, I'm looking at a picture of my office right now with my eye and, and it looks like all little dots all over the inside of my eye, and that is scar tissue from where they cauterize the vessels. And that is not what a normal eye looks like. And that is the inside of my eye. But when I look at that, I didn't feel anything during that, like it, there's no physical pain, it's just the discomfort of things still, and a bright light being in your eye for a little bit of time. So I think in like the scheme of, of like, physical pain of things that you're treated for, certainly, as somebody who's broken quite a few bones, like a broken bone is 1000 times worse than having your eyes treated. But I think the stress of the anticipation of having a problem is really the hardest part.

 

Marty Drilling  26:38

If anybody is concerned today about getting treatment for their eyes, the progress that has been made makes it a totally different experience from what we experienced and what I experienced. And they don't even use laser treatments as their primary choice for treatment of anybody with the retinopathy. So they shouldn't be squeamish. It sure beats the alternative of not being able to see

 

Stacey Simms  27:05

Alecia, I've got to ask you, because you know, you've been through these clinical trials, and my son uses control IQ. I'm curious, what led you to that? And when did you jump in? Was it back with type zero years ago?

 

Alecia Wesner  27:17

Yeah. Well, this is this is a crazy story. So I live in New York City. And I was at a JDRF board meeting, and Todd Brobson spoke, and he had been in a lot of the very early closed loop clinical trials at UVA. And at the end of his speaking, I asked to take a picture with him and hug him. And I don't know that he was totally comfortable with that. But I'm aggressive. But I felt so passionate about what he was doing. And that, how could I do something like that? And then, you know, you worry, because you've had diabetes for so long that you won't qualify, you know, like, Am I almost like too broken to participate in these things. So I got on the list at UVA, along with a very good friend of mine. And over about a year and a half, there were a couple times where they were going to bring us in and you know, we got our physicals and all of those things. And then we both got an email saying, We've good news and bad news. The good news is the trial we were going to use you for has made enough progress, that we don't need you anymore, which you know, if you think you're going to be in a trial, that's a real bummer. Especially because you're trying to coordinate how you're going to get to UVA and like take time off work and all this other stuff. But the good news was that the next phase of trials now is going to go out to other research institutions. And one of them was Mount Sinai in New York, I got this email as I was sitting for my regular three month checkup with my endocrinologist and Dr. Cara levy. And she was the doctor who was going to be overseeing the trial.

She walked into the room, I said, you're never going to believe this. And she said, I already know your file as somebody who maybe could be in this trial. So that's how it all started for me. But I think for me, at a certain point in my life, my life view is that this life is really a gift, and that I am lucky to be here, and that I have lived on borrowed time since I was six years old. So I think I had gotten to a point where you know, I can do fundraising, I can do walks and I can do rides and everything else. But what is the next level for me of how you know, my life, and this body can make an impact and I thought being in a clinical trial so you know, some of the trials have been much more challenging than others. One of them was actually up at Joslin and I wish I had known Marty then because I then walked around Joslin, after everything and there they had done a lot of eye scans, and they have the original equipment for treating eye treatments in the lobby at Joslin and to me that hit me hard because you know your life is like Not a straight line and not a normal path that you plan. But that was a real moment. This friendship that I have with Marty is, you know, we were laughing about the fact that it's been a year. But Marty and I talk all the time. And it's such a crybaby mess. And I've only had like two cups of coffee, like usually this is like a drink.

 

Stacey Simms  30:28

But we understand why,

 

Alecia Wesner  30:30

you know, I just, I just feel really lucky. And, and I am glad for that. And it is just, it is such a pleasure to know somebody who has, you know, it's like Marty, I, there were no blood meters when I was a kid, it was testing your urine. And the technology has changed so much. I mean, carb counting didn't exist. But I I look at that. And it's, it's such a special thing to have this bond with somebody else. And that they they really did have an impact on your life.

 

Stacey Simms  31:01

Marty, have you been back to Jocelyn? Have you seen that in the lobby?

 

Marty Drilling  31:05

Oh, yeah, absolutely. stone in the base of my unit. It's prominently displayed there in the lobby, the corner of the waiting room. I have seen it then that like a we should meet makes a big difference. Joslin does a great job of maintaining the history of the development so that we can all appreciate this how far we've come, we're not, we don't have a cure. But most diseases, you never get a cure. But certainly with the improvements made with them, the pump and carb counting, we have a lot of instant information to help you make a best decision you can based on what the facts are at the time, knowing full well that what may work five days in a row, which isn't going to work six days, six, seven or eight. But but that's just the reality of the situation. And was it wasn't cool, we should he's right is I think we have a unique bond just because we have so many shared experiences, and have the same approaches is take advantage of each day and your torture.

 

Stacey Simms  32:10

Before I let you go. I'm curious. Marty, one more question about you know, your story here. They told you it sounds like one of the reasons you did the clinical trial in the first place was because they said, you know, it's 1974 you're probably going to go blind if you don't do this. And I'm curious, you know, looking back at that, what's that, like to hear those words, I talked to a lot of people who are diagnosed, you know, before, I mean, I'll just put down 2000 as a casual marker, I'm kind of making that up. But I know people who were diagnosed in the 1990s, who were told they wouldn't live to be 30 years old. You know, it's got to be devastating to hear that. And I don't know how somebody hears that and says, forget you, I'm gonna fight I'm gonna do what I need to do to make it. I'm just curious, you know, when you hear words like that, how do you keep going?

 

Marty Drilling  32:54

From my point of view, I said, I'm going to make the most of each day if that's what's going to happen, you certainly don't have an alternative because there's only a Joslin said, if you will have a comply with the rules and you know, live a good life in terms of diabetes care, you can survive, and if you don't, you're gonna die a quick and very painful death. So that was the impression. But no, you're talking about those that were diagnosed in the 90s. Back in, in the 50s. My mother, I was four and a half. And my parents were told, he's not going to make it to its 11th birthday. So I go leash everyday is against, I just figured I'm going to get the most out of life while I have it in this 70s. every October, the New York Times would run a full page article. And now all the deleterious side effects of diabetes long term complications. So I figured if I survive to the age of 40, I'm going to not have any legs or be blind. So that certainly impacted I'm sure on some of the nights when I decided I was going off this strict regimen. But all in all, I just said, I sort of figured if I can defy science, and that's alright in my own book. And so I just kept wanting to prove people wrong, but it didn't it impacts how you think about life. Certainly, I didn't do some things like I never took up skiing for an example. And we should can because I was told by ice wood, all the jolting and going down the ski slope would cause the my eyes to hemorrhage. So there are sacrifices you make, but I just never let it stop me from getting out of bed in the morning and doing something positive.

 

Stacey Simms  34:50

And now Alecia, I'll ask you to you know, it is remarkable to meet someone like Marty, who as you said for years you wanted to thank the people that had done these clinical trials, what is it like now knowing that you are that person? for other people, there is somebody who is into the 21, who is thanking you, who may never meet you for doing these clinical trials and everything you have done.

 

Alecia Wesner  35:14

Yeah, that part's a little weird. So because Marty actually asked me this one time, about how I see him, that other people will see me like that. And I really poopoo the whole thing. But there is a sense of responsibilities. Like when you're in these trials, you're following a lot of rules. And I think the reason that I kept kind of working my way up the chain of clinical trials, as far as AP step one was because at the beginning, they want to make sure you're, you know, you're on a tight schedule, and you're writing everything down. And you know, it's a huge time commitment. So I think I've taken the responsibility of being in trials very seriously because I, I want these technologies to work. But I think for me, you know, I, and Stacy, you're a mom to somebody with Type One Diabetes, I think that a lot of credit goes to my parents, my parents, when I was diagnosed, the doctor said, She's a child first and a diabetic second. And that really, they took that to heart. And I played sports, I didn't want to play like sports, I hated. My parents made me play, because I was going to show the world that I could do this, but also because I was supposed to be getting exercise.

And like I went to sleep overs as kids. I did not like in my class, because my mom thought if this person will you know, when I was diagnosed, the concern in the neighborhood was that I was contagious. Right? Right. It must have been Oh, yeah. And, you know, all of a sudden, like, I went from having friends too. And, you know, this is long before the internet and sold. But, you know, somebody invited me to sleep over and I thought this girl was a bully. And my mom said, You're going there. And I was like, Please don't make me go, please. Go and, and, you know, and I ended up going to sleep over because her mom really wanted to put it out there. But it was okay to have me sleep over. And I looked back at, you know, my parents pushed me so much. And I guess there's like a negative to that too. But I think in the end, like, you know, I went to college, and I knew somebody else with type one who went to a local school because their parents didn't want her. They thought it was too much of a risk to move away. And Stacey, as you pointed out, we both went to Syracuse. And Syracuse was, you know, a whole different world than what I had come from. But I think those things, and I do think that's part of the bond that I have with Marty beyond like I was to have these clinical trials, we don't have diabetes and stuff like that. It's that I think we both have a very similar approach to life, which is go out there and do it. You know, and that doesn't just relate to diabetes. That's life.

 

Stacey Simms  37:45

I love it. Well, it has just been remarkable to listen to both of you. I hope I've done your stories justice here. I'm still kind of teary and I'm not happy about that.

 

 

Alecia Wesner  37:59

Marty just had his wedding anniversary this summer. And I spent the day with him.

 

Stacey Simms  38:05

Oh, Marty, how long have you been married? Tell us about tell us what your wife.

 

Marty Drilling  38:08

My wife is a saint. We've been married 47 years, have two kids and five beautiful grandchildren. And I tell people all the time that without her I don't think I'd still be here because she has accepted the burden of living with a type one diabetic and does what she knows has to be done. Even if I'm having my low when I get nasty. She put tolerate it and then I pay for it later. But I get out of that immediate situation. And so yes, Maureen has been a godsend to that. She after we got married, she actually went to nursing school, too, because that would give her more flexibility in working with the kids. But it also has been a huge benefit for my day to day existence in our day to day life together.

 

Unknown Speaker  38:58

Marty.

 

Stacey Simms  38:58

Alecia, thank you so much for joining me for sharing your stories. And I really hope you come back. Let's check in again, maybe you know next year and see what everybody's doing. But thank you so much for joining me.

 

Marty Drilling  39:09

Well, thanks for the invite and great, great talking to you and Alecia.

 

Unknown Speaker  39:15

Thank you.

 

Unknown Speaker  39:21

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  39:27

Lots more information on what you need to know about taking care of your eyes. We will link up more information about some of these clinical trials. I just found this story to be fascinating. You can go to Diabetes connections.com click on the episode homepage as always for the links in the info and the transcript. I so enjoyed this interview. I think you could probably tell as I said, I don't get too emotional about this stuff anymore. But every once in a while it sneaks up on you and boy, I mean you can't even hear it really during the interview. I cried so much more. It's a complete mess and it was one of the things Few days, I forgot what I was doing that day. But I'd actually put on makeup. I had something else where I had to be on camera, and I was a complete mess. If I haven't cried off my mascara in a very long time, thanks to all this working from home. Hopefully we'll follow up with Marty and Alecia, I really think they'd be fun to check back in with.

Okay, up next we're going to talk innovations, a new team is announced for the United States pump market. But first diabetes Connections is brought to you by Dexcom. Do you know about Dexcom clarity, it's their diabetes management software. And for a long time, I just thought it was something our endo used, you know, 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 check it now about once a week. I probably check it a little bit less than that these days. But it really helps Benny and me dial back and see longer term trends and help us you know, not overcorrect to what just happened for one day or even one hour. The overlay reports help the context of these 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 go to Diabetes connections.com and click on the Dexcom logo.

As I am taping this episode, it has just been announced. And I mean like an hour ago that Eli Lilly and Yep, so med have entered into an agreement to quote advance an automated insulin delivery system, they are getting into the hybrid closed loop market. There is going to be a lot more information forthcoming. I have already contacted these folks to see if they'll come on. I definitely want to talk to Lily I really want to talk to Yep, so mid I hope I'm saying that right. This is a European pump company that has been out bro, I'd say since the mid 2000s, probably since 2016. I know a couple people who use it who are very happy with it. It hasn't come to the United States yet, but really plans to bring it here, they will probably submit in 2022. If all goes well, so who knows if it'll be early or later when that will actually come out. But here's what's interesting to me. And again, we're getting a lot more details in podcasting is not the best way to get breaking news. So I will be putting more out on social media.

But here's my very quick take about two two and a half years ago in May of 2018. A bunch of bloggers and I guess influencers were invited to Lilly's headquarters in Cambridge in Massachusetts, as Lily had this connected diabetes solutions system that they started talking about, and apparently or supposedly wanted blogger input. So we all went and we were shown an early prototype of what was supposed to become Lilly's pump. And I assume now that they are not going to use what we saw, which was a little disc it was a little bit smaller than I think at the time, people compared it to like a little round box of shoe polish or tobacco chew, you know, that kind of stuff. It was about the size of a small coaster, it was less than an inch high, it was very sleek and tiny. It was connected to the body by a little tube. So you could make the tube longer or you make the tube shorter. The idea was that you were close to the body, kind of like what we've seen of the upcoming and expected tandem tee sport where it has a tube but it is supposed to be placed very close or on the body like an omni pod. And you could hear us talk about Lily's connected diabetes solution as they call it in a past episode, I will link that up. It also features pens, and it is at least at the time we were shown it would be using the dexcom CGM. I don't see an announcement of that. I don't see a CGM announced with this. But of course, they'll have to be one, the assumption would be that it is Dexcom since Lilly has an agreement with them.

But what's troubling and I guess that's a strong word to use, but I'll use it. what's troubling about this is that this pump will use prefilled insulin cartridges for Lilly's rapid acting insulins. So it is a proprietary insulin system. I don't think there's any other pump on the market that only uses one kind or one brand of insulin. And my guess is they will make sure that by making the cartridges, a special shape or some kind of patent so that if you want to use a novo insulin in it, you can't. I don't know for sure. We haven't seen that the DIY community is fabulous at this and if it can be done, I know they will get it done. But I find that troubling when we voiced that in 2018, we asked about using only Lilly's insulin in their pump and how troubling that would be. And at the time reading between the lines, my takeaway was Lilly feels the insulin makers all feel that the Ryan's gonna be over soon, states are getting into the action, they're cracking down on price. There are going to be reforms whether they're on the federal level or not, and they're not gonna be able to charge what they have been for insolent and they need to find a way to continue to make the outrageous sums of money that they are making. I know it's not very nice of me to say but you And how I feel about this. So I think proprietary pumps are one way that they may try to do that. I of course will give Lilly a chance to respond, as I said have already reached out to them and to give some meds so hopefully they will come on the show and tell us more competition in the pump market is a great thing, but not if that's at the expense of competition, little as it is in the insulin market.

We’re in the homestretch of 2020 and like a lot of you this year cannot end soon enough for me However, there's still some good stuff to come we will look at the bright side as much as we can and friends for life is coming up. They are doing a wonderful virtual winter conference. I will link some information in the show notes as well. We are doing our game show Wait, wait, don't poke me which is one of my favorites. And we had a great time doing this. I love writing all the nonsense that goes into the show. If you haven't listened to it or seen it in the past is a take off of NPRs Wait, wait, don't tell me. If you haven't heard that show. I highly recommend you listen to it. It's just a fun trivia news and nonsense. There's limericks. It's really a fun game show. Doing these game shows without an audience is very difficult. My panelists were ready in game and up for anything and they did a great job. I might have to put a left track in as I edit it, we shall see. But I hope if you're going to friends for life, virtually that you stop by watch the game show and take part we have some fun interaction. Last time we did this over the summer I created a bingo game where you could play along from home. I think we'll do that again.

And then we are just looking forward to 2021 I have lots of fun stuff in store for the podcast as usual. I always want to hear from you. Let me know what you think what you like to hear what you don't like to hear. I take it all to heart and do the best that we can. 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  46:55

Nov 17, 2020

Alisa Weilerstein has been living with type 1 diabetes almost as long as she’s been making music. She debuted with the Cleveland Orchestra at age 13, played Carnegie Hall at 15, performed at the White House at 27, and at 29 was awarded the MacArthur Foundation “genius grant” fellowship. She was diagnosed with type 1 diabetes at age 9 and her first concern, of course, was for her fingertips! Alisa speaks to us from Berlin, where she and her family spend half their time.

In Tell Me Something Good we share stories about girl scouts stepping up and hearing a Dexcom alarm at the Supreme Court.

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

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

Alisa mentions playing in concert while pregnant. See that video here

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

 

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Episode Transcription (rough transcription, not yet corrected)

 

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 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, she was playing the cello before she went to kindergarten. In fact, when Alisa Weilerstein was diagnosed with type one at age nine, her first thought was her  fingertips.

 

Alisa Weilerstein  0:41

I was already quite curious about the cello and the left hand, of course, it's the hand that goes on the fingerboard. And I remember saying to my doctor, I'm not going to click my fingers on my left hand, they won't be able to play.

 

Stacey Simms  0:50

She was certainly able to keep playing - Carnegie Hall at 15, the White House at 27 and at 29 Weilestein was awarded the MacArthur Foundation Genius Grant fellowship. She has quite a story. It was great to talk to her

and tell me something good girl scouts stepping up. And did you hear the Dexcom at the supreme court hearings?

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 am your host Stacey Simms, and we aim to educate and inspire by sharing stories of connection. If you are new to the show, I am so glad to have you here a little bit about me. My son was diagnosed with type one right before he turned two he is almost 16 now so it's been a minute, my husband lives with type two. I don't have diabetes, but I have a background in broadcasting and local radio and television. And that is how you get the podcast. I am always amazed when I meet and talk to people with incredible musical talent like our guest this week. To me playing music reading music, expressing yourself through music is like another language. I appreciate music. But I don't have that kind of innate understanding that a true artist has my old radio show co host when I did mornings in Charlotte, North Carolina, where I am now for more than 10 years. And he was also a musician. And they just have this natural ability. I mean a true musician who can write music and read music and play and play by ear. To me it really is something special. And I hope I did this interview with Alisa justice. Because of course we're interested in talking about diabetes, but we talked about music as well.

I also want to let you know, we are not out of November yet diabetes Awareness Month of course, we'll be doing some fun things on social media. I have a big sale going on for the world's first diabetes mom real life stories of raising a child with type 1 diabetes, it is on sale right now use the coupon code November, you've got to use it on my website at Diabetes connections.com. I can't do coupon codes on Amazon sorry. But this covers more than free shipping and everything else. So it's still a nice discount if we're doing $4 off for the rest of the month. So go to the website, scroll down, you'll see the book in the middle of the page there under the most recent podcast episodes. And to use the promo code, you're going to click order a signed copy. The other links take you to Amazon and you can't use a coupon code there. But if you click on order a signed copy, it'll take you to the right place. There's also a little teeny tab on top that says shop.

It's hard for me to believe the book has been out for a year. I hope you're not tired of me talking about it. I got one nasty email this year I will share. Somebody stopped listening to the show two weeks after I published the book because he was tired of me talking about it. I felt like saying to him, you write a book, see if you want to talk about it! (laughs) But I appreciate you you know putting up with it. Especially this year when the whole book tour was canceled. I was supposed to like many of you, right? We were supposed to travel and go places and do things so you know I get it. Of course everybody's in the same boat. But I am going to continue to talk about the world's worst diabetes mom because man it was so much fun to put together and I'm not ashamed to say the response has been fantastic. So if you want to get a copy promo code November at Diabetes connections.com

Diabetes Connections is brought to you by One Drop and getting diabetes supplies because a big pain you know that not only the ordering and the picking up but 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 lifts 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.

My guest this week has been living with type one almost as long as she's been making music. Alisa Weilerstein has a remarkable story she debuted with the Cleveland Symphony At age 13, played Carnegie Hall at 15, performed at the White House at 27. And then she was awarded the MacArthur Foundation Genius Grant fellowship when she was 29 years old. I found her Tiny Desk concert. If you're familiar with those from NPR, that was 10 years ago, I will link that up as well. She is currently in Europe where she and her family live for half the year. I spoke to her. It was back in September when she her husband and their four year old daughter had just traveled back to Berlin from San Diego. Elisa, thank you so much for joining me, it's so interesting to talk to you that you're in Europe, we've got a little bit of a lag here on the call. But thanks for coming in. I

 

Alisa Weilerstein  5:37

appreciate it. Oh, you're so welcome. Thank you for having me on your show.

 

Stacey Simms  5:40

Before we jump in and talk diabetes and music. Tell me a little bit about living in Berlin. You live there half the time now?

 

Alisa Weilerstein  5:47

Yes. Well, I mean, I'm a I'm a cellist I played classical music. Of course, in normal times, I play about 120 concerts per year. And they're split between Europe and North America with an occasional trip to Asia. Of course, during the pandemic, that's been radically changed, obviously. But that's my schedule during normal times. And so it was very important for both me and my husband, my husband, as a conductor, to have a base in Europe as well, so that we're not just constantly on transatlantic flights, more than we actually need to be. So we have a base in Europe, which is Berlin, and it's such a great Center for the Arts. And our daughter loves it here. Our daughter was actually born here four and a half years ago. And yes, that's one reason why we chose Berlin.

 

Stacey Simms  6:27

I'm curious what the flight was like, and what the experiences like traveling from the US right now, with everything that's going on?

 

Alisa Weilerstein  6:33

Well, it's interesting, because then we spent most of the pandemic in San Diego. So we were there from March 13. Basically, you know, that that the day that all of the all of the borders shot, and I actually traveled to Germany in June, to play a live broadcast in Hamburg. At that time, it was a two week quarantine in Germany. And so I can't even hear it here in my apartment in Berlin. And at that time, it was even more sort of wacky to travel at that point than it was a week ago, when we flew back here to San Diego with my whole family. At that time. I mean, there were there were so few flights, and there was practically no one in the airports. So I flew from LA to Newark, of course, you know, you don't take your mask off your face, obviously. And even though there were like 10 people on my site, and not more than that, and then I had 10 hours in Newark, and then I suppose from Newark to Frankfurt, and I got a test immediately upon arrival, they were even doing testing at the airport at that time. And then my results arrived within 48 hours. You know, I tested for the for the virus and also for the antibodies, which unfortunately, I didn't have the antibody, I was actually disappointed. But anyway, I flew back to San Diego to rejoin my family. And then my whole family to my husband, my daughter and and also our daughters many. We flew back to Berlin. Again, it was a very few flights to San Diego, Chicago, Chicago, London, London, Berlin with a four and a half year old, you can imagine what oh, my gosh. But, you know, we tested right before literally before he went to the airport, we went to a lab to test and then we got tested at the airport and in Berlin Tegel airport there. They're doing testing upon arrival. And those results came within 24 hours. And potential street for me got here. So my girl was able to go to school right away here, which made her very, very happy. Great. Yeah,

 

Stacey Simms  8:18

yeah, I'm glad. I'm sure you're all glad to be settled.

 

Unknown Speaker  8:21

Oh, yeah.

 

Stacey Simms  8:24

So let's talk about type one. You were diagnosed at nine. Do you remember your diagnosis story?

 

Alisa Weilerstein  8:30

Oh, yeah. Very well. Yeah, it was actually the month before my 10th birthday was March first 1992. And as you remember that, of course, like 92 was a kind of critical year in diabetes research, which definitively proved that tight control could ward off the risk of complications by you know, whopping percentage, and they are 66% less likely to get complications if the agency was 7% or below. So that was encouraging. But yeah, my diagnosis story was essentially, for the couple of months leading up to my doctor's visit, I exhibited the classic symptoms, I was urinating frequently with who had extreme thirst, and I was losing some weight. And I've always been a kind of muscular body type. And I suddenly became, you know, sort of like belly dancer and not like my energy was okay. And was was actually sort of normal until like, about a, I remember, like, a few days before I went to the doctor, and I was just feeling just sort of tired, which was very unlike me. And my mother took me to the pediatrician. She said, you know, maybe you have a bladder infection because I was, you know, going to the bathroom every hour or something like that. So I remember we got a urine sample from home, which the doctor had asked us to do that. And so you know, I peed into a jar basically. And then we went to the pediatrician and, sorry

 

Stacey Simms  9:52

It's a type one diabetes all the time.

 

Alisa Weilerstein  9:58

The diabetes podcast, so I'm your listeners are familiar with this. And anyway, I am submitted the sample. And then I remember the doctor who might like very much, I actually took my mother aside, and there was some whispering, which I didn't know about. And my mom looked very serious. And she said to me, Well, the doctor thinks the jar was contaminated. So just give her another example. And so I went to the Darrell bathrooms and gave her a sample from the sterile cup. And unfortunately, the result was the same, which of course, showed sky high glucose. And the doctor said, Well, you know, you need to go straight to the ER, and doctor told me, so do you need to get a blood test? And so I thought, Oh, my, you know, I don't really like and then I remember asking my mother, I said, well, Can I at least get some m&ms afterwards. And my poor mother, she, I mean, she didn't know much about diabetes, but she heard that word diabetes mentioned. And she knew that that meant a sugar issue. And so she just kind of looked at me and she opened her mouth, and she closed it again. And ah, and, you know, we drove to the hospital. And then the rest was really kind of blur. My father, you know, I remember my mom calling my father saying you need to get here now. And my, my little brother at the time was four. And I remember them all kind of standing around me and I was getting weighed. And then suddenly, I was like, on a gurney with IVs, and needles sticking in and out. And then doctors coming in saying, Yes, we think it's juvenile diabetes. And of course, you know, somebody was in examining my tongue to see how to hide it. And I might I, I might have been, and it was very kind of dramatic. My blood sugar was 464. At the time, they said that actually, we caught it relatively early. If you can believe that. I think at that time, some kids were coming in already, you know, the 800, or something like that, coming into with, you know, really, rather advanced ketoacidosis. And I wasn't there yet, I was throwing some ketones. It wasn't yet in kind of a dire situation. Anyway, I was then in the hospital for about a week just for the kind of diabetes education and it was kind of a crash course in how to manage type one diabetes. And at the time, my insulin regimen was NPH. And regular to the fast acting because it was it was even before the time of humalog. And my blood sugar meter took 45 seconds to read the blood glucose results and counting carbohydrates and all of that stuff. So this was my diabetes education.

 

Stacey Simms  12:16

At nine years old, you were already on your way to playing music and performing as you did anyone say anything? I had to fit your first question, right? Can I still do this? What did they tell you about your musical career?

 

Right back to Alisa, she's gonna answer that question. But first diabetes Connections is brought to you by Dexcom. And they have this great partnership with Tandem now with basal IQ and control IQ. And we started on basal IQ as soon as it was available. And this is the Dexcom g six tandem pump software program, and immediately started doing less work for better results. When we switch to control IQ, oh my gosh, even less work even better results with diabetes. I don't know if you remember, but years ago, they started with just putting the CGM information on the pump and it didn't communicate, it's just there. But this is something else, the whole system keeps spinning more steady. His time in range has increased significantly, his agency, you know, I don't share exact numbers, but it is the lowest that he's ever had. Of course, individual results may vary. But to learn more, just go to Diabetes connections.com and click on the Dexcom logo right back now to Elisa sharing what she was most worried about at her diagnosis.

 

Alisa Weilerstein  13:38

Well, this is why I say 1992 was actually I mean, if one had to be diagnosed with diabetes, you know, at any time, it was an encouraging year to be diagnosed. Because I mean that the doctors who actually were well informed said, If you manage this, well, you will be able to live exactly the life that you want to live. And that was the constant messaging from my doctor at the time, all the nurses around each month this is and and they were teaching me how to do things. And he said this is the reason you have to do this is so that you can live a full life and do all the things that you want to do and play the cello do go to school, see your friends, play sports, do all of these things. And I remember there was just one issue, where I kind of had to make a special accommodation, which is what the finger picking, because of course I was already as you say I but I was already quite curious about the cello. And the left hand, of course is the hand that goes on the fingerboard. And I remember saying to my doctors, I'm not going to click my fingers on my left hence I won't be able to play and I but however if I was able to prick my fingers on my on my bow hand that wouldn't have affected that. So I only used three fingers to prick and my whole life after that I only I only use the same three fingers to pick my finger, my test my blood sugar, and luckily they accommodated and they basically well as long as you do it and as long as you don't hurt yourself. Sure. That was the answer.

 

Stacey Simms  14:57

I was going to ask you about that. Because I couldn't imagine especially the amount of finger prick you had to do back then. Yeah, Listen, I've, for somebody who nagged her son for years to rotate fingers do a different thing. Yeah, you were able to just move it around enough so that you didn't have issues with just those three fingers.

 

Alisa Weilerstein  15:14

No, I didn't. And, and even at the time, I mean, the lancets were very good, very painless, and very thin. So I mean, there was actually there was never an issue. And I mean, at the time, the recommendation was to test four times a day, I remember at the time that was considered like being very responsible. Of course, now, we would probably say that's kind of bare minimum. But as I got older, and I tested more often, I mean, I was asked to test before the continuous glucose monitors were accurate enough to kind of rely on I was testing 10 times a day, and I was just using those same three fingers.

 

Stacey Simms  15:43

That's so interesting. And you've mentioned a couple times 1992, we should just step back and mention as you listen, if you're not familiar, we're referring here to the dcct trial, the diabetes control and complications trial, which was really the first time as you said, that they believed that you could make a difference. I mean, it's hard to believe that before that time, doctors thought, Well, that's it if you have type one or juvenile diabetes, as they called it, you wouldn't live past 30. And this showed that you could,

 

Alisa Weilerstein  16:09

yeah, and you would kind of have to go to an alternative doctor to get anything more hopeful, or any kind of agency with it's really yeah, and

 

Stacey Simms  16:16

I'll link up more information on the dcct. It was such a pivotal time and diabetes. And it wasn't that long ago, when you think about it now. Alright, so you're then on your way, you're doing what you need to do. You've got your family on board, you're playing music, Cleveland Orchestra at age 13. And on and on. And I have to say, when I watch someone play the cello, and please forgive me, I am so musically ignorant, except that I enjoy listening. It seems like it's very athletic. It's a very physical looking instrument to play. Can you talk about that? Is it I assume that

 

Alisa Weilerstein  16:48

yes, it is? Oh, yeah, yeah, completely. And especially I'm not very tall, myself, I'm about five to my posture is good. You know, you have to learn how to use your body in a very efficient way, like kind of a lot of Alexander Technique. And yoga concepts can apply very well to pretty much any instrument, but kind of the cello, especially in terms of the strength that it takes. And truly free with instruments, you have to basically use your body to know how to use the natural energy and not natural body weight very well. And of course, it just takes a lot of years of practice to build it up. I mean, there's no substitute for time really, with that,

 

Stacey Simms  17:21

you must have by now of routine and you you the physicality of it, you've got that down. But when you were younger, and first learning, what did you do? Did you keep tabs like in your chair, or in your case, you know, how did you manage diabetes and playing

 

Alisa Weilerstein  17:35

I mean, I kept glucose tablets pretty much everywhere. playing the cello itself did not cause low blood sugar, I mean, there were a couple of pieces that I knew were kind of workouts in a way and that I would sometimes eat a little bit or maybe drink a little bit of juice before, I mean, like the way you would before going for a run, just to have like a little bit of energy to make sure that you have a threshold that can kind of carry you through if you're going to drop a little bit. So it was a lot of trial and error. And I just found out kind of what worked in I mean, in terms of going on stage, especially before the pump, certainly which I got an A pump when I was 16. So that was 98. And certainly before the CGM, I would test before going on stage. I mean, I've just tested in general much more on concert dates than on other days. And I always like to get to the hall about an hour before so that I could slowly put the gown on. So they put me so they kind of put my ducks in a row in terms of playing and just warming warming up slowly and kind of just getting myself in the mental space. But it was also blood sugar wise, it was just important for me to be able to test one hour before, kind of every 15 minutes. And then like two minutes before I'd walk on stage just to make sure that I was not going to get low on stage. I mean, like if I was 170, or something on stage, it wasn't ideal, but it was better than being 65 when you're going on stage because of course below that, then you kind of start to lose coordination. I mean, my ideal number to go on stage would be like 130 because the blood sugar's maybe slightly on the high side, but it's good enough that I felt normal. And I had a threshold to drop, so that if I walked offstage, and I was 85 or something like that would be fine.

 

Stacey Simms  19:10

You mentioned there were a couple of pieces that stand out as being more physical or do can you share those with us? I'm curious, which anything stand out?

 

Alisa Weilerstein  19:20

Sure. There's a concerto, which means that there's a solo instrument with an orchestral accompaniment, and the composer is Prokofiev, who was a Russian composer who actually died the same day that Stalin died. Oh, my 1953. Yes, the same day. So of course, nobody paid attention when he died, unfortunately, because it was one of those really, really tragic ironies to add to so many tragic ironies of the time, but he wrote a fantastic masterpiece for each other an orchestra called the symphony concert count, which is a symphony concerto. It's a 45 minute kind of tour de force, for the cello and for the orchestra as well, but especially the solo cello where which is just Just wild, very, very, very physical, technically very, very challenging. And it's just kind of an endurance exercise. And I remember just being very sure that I was not going to get low on stage. So I did a few practice runs of that pizza. The first time I played it in public, the first time I played it in with the orchestra, I was about 16 or 17 years old, I did several kind of practice runs, just running through with it with a kennel reduction for friends and for for my parents and things like that. So I knew kind of what my blood sugar threshold was with that piece in particular, it's funny, it was

 

Stacey Simms  20:34

Prokofiev. All I know is Peter and the Wolf.

 

Unknown Speaker  20:37

That's what I think. Yes, of course. No, it's just what I pay for my daughter all the time. You're fantastic.

 

Stacey Simms  20:43

It's funny. Oh, yeah. That's great. Yeah, yeah, at this point, it's almost like a professional athlete. In terms of I assume you have a routine, you know, you know,

 

Unknown Speaker  20:52

look, at this point, you

 

Stacey Simms  20:54

know, what you're doing. I'm curious. But anything throw you for a loop in terms of diabetes. These days, I'm thinking about advice for, you know, younger people who are starting out in a musical career, or, you know, just anything like that. So what throws you for a loop, we're in there?

 

Alisa Weilerstein  21:10

Oh, well, sometimes I can have a very inconsistent response to stress or to nerves, because generally speaking, I don't get nervous on stage. But perhaps the kind of travel situation, especially these days can make me quite stressed out and, you know, say high strung and nervous and then my blood sugar just shoots up, sort of out of nowhere, or it can be like a kind of a sticky high, and I can't get below 185, no matter how much I mean, like I can be, like, feel like I've got an ID of insulin and nothing brings it down until I relaxed, that can just sometimes be really kind of flummoxing and very frustrating. And then of course, I get more stressed about the blood sugar. And then of course, the stress response doesn't go down. So that's something that I just find very frustrating. And something that I feel is kind of out of my control and less like kind of just force myself to do some deep breathing in a kind of airport travel situation, which is stressful. Other things that life can throw your way. unexpected things I just signed, you know, test test test, look at the CGM as much as possible. And then you can catch the kind of unexpected highs and lows much much more easily. And so that's my advice to anyone just test as much as possible. Or if you have a CGM. Just make sure that you're really aware of what's going on there.

 

Stacey Simms  22:20

Can I be nosy? And ask where you were your tech? Yeah, she during performance, of course, I'm trying to think of the body motion and where it's, you know, where it makes sense.

 

Alisa Weilerstein  22:29

Well, not on my arms. Probably imagine, I put my infusion set in the center of my stomach. And when I'm wearing a gown, there's, I'm not sure even which company makes any more. But I think there's the diabetes mole, which has something called the five thing and this kind of like a garter belt, and it has a pocket, which is where I put my pump, when I'm wearing a dress or a concert gown.

 

Stacey Simms  22:52

Right? You've mentioned your daughter a couple of times, if they did, were you concerned, I obviously, you know, it takes a lot of work when you're wanting to get tight control before you get pregnant. I'm curious. Sounds like your doctors told you from the get go that you'd be okay. Can you share a little bit about that journey in terms of, you know, deciding to have your child,

 

Alisa Weilerstein  23:10

it's something that was kind of hanging over my mind. And it was it that's a personal thing. It's just not to say that, oh, you get a diabetes diagnosis, and you worry for the rest of your, let's say, especially if your child 17th, whether you're going to be able to have a healthy pregnancy or not. But I did actually have that kind of worry. And I would say I spent probably two years before we decided it was the right time to try and conceive just kind of experimenting to see how tight I thought I could get the control, especially with an intense travel schedule. And I found that at the time, the CGM was getting better and better. Like as you know, back in, you know, 2008 2009, the CGM was maybe 40% accurate assess. I mean, it was just terrible. I was like throwing it against the wall sometimes because it would just as I took Tylenol or something, it would go up to show that I was reading 400 because it couldn't, it didn't react about this kind of medicine and other things. And it was fall off. And it was just awful. So I get back two years before, you know my daughter was born in 2016. So this was like 2014 or so. I mean, my agencies had been in the low sevens at the time, and then I got them down to 6.8 6.6. And I thought, Okay, I think I'm going to be able to manage this. Because I was doing a lot of fine tuning. And then as your son will probably relate to this, like, the more you pay attention, the worse you actually think your blood sugar is, but it's actually your budget is actually getting much better. You know what I mean? Yeah. And so this was something that I realized that my doctor was telling me I was doing it, basically. And I was like, Really? I don't think I'm doing and then I saw Oh, my average was like 129 Oh, okay, that's not bad. But I mean, of course, it needs to be better than that for pregnancy. But this is in range. I could finally envision, you know, having an average of you know, 110 or something like that. And so we got pregnant and of course, the pregnancy itself is the biggest motivator. And I, of course, I was poked and prodded more than I care to remember during the pregnancy because of course, I was classified immediately as high risk and I had to see the doctor, you know, all the time, but I was working and traveling until 35 weeks. Oh, well, you can find a YouTube video of me doing my second to last concert with our daughter, my daughter and my belly. I played Hindemith concerto with the Frankfurt Radio Symphony. And my belly was absolutely huge. And then like, I'm walking on stage with this thing. And I saw myself, wow. I mean, I remember what it felt like. But seeing it now as it was some distance. It's kind of kind of amazing to me that I did that. But it was important to me to keep going. And I generally had a very easy pregnancy until the very end, and I felt best. And my blood sugar was best when I was active. You know, I was under strict supervision of my doctors, but I managed to do that.

 

Stacey Simms  25:50

How do you talk about your diabetes with your daughter?

 

Alisa Weilerstein  25:52

What does she know? She knows, in a very general way, if she sees me drinking juice, she knows that I'm low, because I don't drink juice. Otherwise, she knows that I have diabetes, she knows the word diabetes, and what you know, let's say in a very general way, what it is, and she knows what my medicine is, and that she's not supposed to touch it. And she can watch me kind of handle it, things like that. But that that's this is only Mama's territory to kind of handle things like that. So sometimes she likes to kind of look at my pumpkin to know what it does and things like that. But other than that, she doesn't know too many other details.

 

Stacey Simms  26:22

One of the things that when we were talking about coming on the show, I noticed that you're working with he Genesis, can you tell me a little bit about what you know who they are,

 

Alisa Weilerstein  26:31

he Genesis is? Well, it's an amazing company, they don't only work on diabetes research, they work on kidney disease and liver disease. And really, they're kind of primary goal is to make sure that there are no organ shortages for anyone who needs them. And so what they're working on is Type One Diabetes islet cell transplants. So they have an incredible immunology team, which I've been in touch with a bit. And it's just, it's very, very exciting, the research that they're doing, and my association with them really is to kind of spread the awareness of what it's truly like to live with type one diabetes, and to stress the need for a cure. Because nowadays, with biotech, making such amazing advances, sometimes people around me who don't know me, so well look at me, and they they don't really even know that I have diabetes, and they say, Oh, well, you make it look so easy. And it seems like with the technology, you can live a very, you know, you What do you need a cure for in a way. And this, of course, is exactly the wrong kind of message that you want to send us and Well, yes, I'm a very positive person, and I manage my diabetes as best I can. And I have the technology and the knowledge to do that. However, as we were saying before, living with Type One Diabetes is a 24 hours a day, seven day a week, 365 day a year job. Even with the technology, there is not a moment that goes by that you can really relax about it, you always have to be paying attention. I don't know how to look at a plate of food and not count the carbohydrates. And I don't know how to go for a run without thinking, Okay, how is this going to affect my blood sugar is my pump actually going to react to that and say, if I if I go for a sprint, how many glucose tablets do I have? Am I gonna drop too low to actually finish it, that kind of thing. And that's even with the technology that we have now, not to say nothing of hyperglycemia, gun awareness and all of these other things that we know are dangers with living with type one diabetes, and you as a parent of a diabetic have a type one diabetic who is luckily very well controlled. This is probably something that that you were always concerned about hypoglycemic unawareness overnight and things like that. I know that this was certainly something that my mother probably lost countless hours of sleep over. And type 1 diabetes is, you know, to say nothing. Also at the expense of managing type 1 diabetes, we all know what insulin prices are, we know what the prescription medication needs are. And the fact that type 1 diabetes is actually the most expensive chronic disease to treat of any chronic disease. And so this is really why we all need to be lobbying this and countless other reasons. This is why we are all lobbying for a cure. Not treatment, pain, of course, better treatment, but in the absence of a cure. But the ultimate goal, obviously is is a real cure.

 

Stacey Simms  29:08

We didn't talk much about music during this interview. I didn't know you were here to talk about. Okay, that sort of thing. But you have been playing according to what I've read you really been playing since probably before you remember much right? Did you start playing cello at age four?

 

Alisa Weilerstein  29:23

I did. Yeah.

 

Stacey Simms  29:24

Is it still exciting? Is it still challenging? Is it still fun?

 

Alisa Weilerstein  29:27

Oh, yes. And I'll eat all of the above. Yes, challenging, exciting, fun, frustrating, wonderful. tear my hair out type of frustrating sometimes as well. But you know, is one of those things where there's no concrete goal, really, I mean, you just have to keep growing. And in a way, there's a kind of a parallel with diabetes management, there are two because as we know, there's no way to do it perfectly. And you have to just do the best you can. And so that's like being an artist. You're constantly striving to be better to be the most studiers to yourself. To the composer's to what you're trying to say, you know, you're always searching for ways to do that better and to do it more clearly. And to do it more Honestly, I'm always experimenting.

 

Stacey Simms  30:09

Well, Lisa, thank you so much for joining me and for making time to talk about this. It's been a crazy time we're living in now, but I wish you the best as you're now in Europe. And, but really, thank you so much for spending some time with me and my listeners.

 

Alisa Weilerstein  30:23

Oh, my pleasure. Thank you so much for having me on your show.

 

Unknown Speaker  30:31

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  30:37

I will link up more information you've got here Elisa play. So I'll put a lot of that in the show notes, a couple of different links, including, you know, she mentioned that video where she was pregnant, I found that and she obviously looks great. But Josh, he plays with such passion in every video, I think you'll love it. So I'll definitely link those up. Whatever app you're listening to, if you're listening on an app, they always have show notes and you can often get the links there as well. But if you have any trouble as I always say just go back to the homepage and that will help you out. Tell me something good in just a moment. Did you hear the Dexcom at the Supreme Court we're going to talk about that. But first diabetes Connections is brought to you by g Bo 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. And that's where Jeeva hypo pen comes in. It's the first auto injector to treat very low blood sugar. Jeeva 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 Jiva correctly, I am so glad to have something new, find out more go to Diabetes connections.com and click on the G book logo. g book shouldn't be used in patients with pheochromocytoma or insulinoma visit Jeeva glucagon comm slash risk.

 

Didn't tell me something good. This week, let's talk about the Girl Scouts for a moment. This is all about Isabella. She was just diagnosed in April. And she is part of a Girl Scout troop. Her mom Carrie posted a photo and I wanted to talk to her about that it looked so great. And here's what happened. Isabella is part of a Girl Scout troop. And she did a presentation on diabetes for diabetes Awareness Month. But this went a little bit further than a lot of the presentations that we have seen. And Isabella let everybody or asked everybody to do a finger poke to experience a little bit of what she goes through. And I'm laughing because the photo that's posted and I'll see if I get permission to share this is Isabella poking an adult's finger, and the adult is looking a little apprehensive. But there's this little girl in the background who just is very concerned, she's got this look on her face. Like really? What do you have to do that all the time? You know, it's a wonderful picture to show the empathy, I think and really also, and this might sound a little bit flowery, but I mean, this the bravery of Isabella, it's not easy to show other people, all the stuff that you have to go through when you have type one. And you know, maybe her friends would be scared or maybe they would treat her differently to have the support that she has, I think is really special. So Carrie, thank you so much for sharing that. Isabella, congratulations to you for sharing all of that. And good on the Girl Scout troop. That's awesome. Our next Tell me something good comes from the highest court in the land. Last week, the Supreme Court heard arguments about the Affordable Care Act. This is the third time in eight years that the Obamacare as it's also known, has been in front of the Supreme Court. But what I want to focus on is Justice Sonia Sotomayor is Dexcom Yes, of course, many of you already know that. One of the justices lives with type 1 diabetes. If you haven't read her incredible biography. I will link that up in the show notes. And yes, she is one of my dream guests. So somebody helped make that happen for us. I reached out to the press office, I'm gonna continue to work it will get her on one of these days. But her Dexcom apparently went off crystal a prick. liano heard it. She is an incredible diabetes advocate. And she was the very first guest on this show. Yeah, back in 2015. And she tweeted out that she had heard it she thought it was her Dexcom going off, but it was Justice Sotomayor is and that sparked a little bit of conversation about why would it be going off as a clerk kind of bring her juice box? And is it frustrating that you can't silence all the alarms? And why would you want to silence all the alarms and it was interesting to hear people go back and forth about that. One thing that did come up if you do want to silence the alarms, and look, I know we want that urgent low to be going off, but you are grownups as you listen, and a lot of people do not want to blaring at their workplace or they want to have a different way of doing this. Right. We all want our DIY stuff. If you don't already know one workaround is to stick headphones into the jack on your phone and then the alarm will go off but it'll go off in the headphones and it won't bother anybody else at work. As a mom, I don't want you to turn your urgent low alarm off. I mean, come on. I'm a mom, but I get it. So that was one thing but came up. But isn't that interesting? I have all sorts of personal and prying questions for Justice Sotomayor. Maybe that's why she doesn't want to come on. And talk to me about, hey, where do you put your Dexcom? Do you use skin tack?

 

Unknown Speaker  35:12

We would have more important things to talk about. I

 

Unknown Speaker  35:13

am sure

 

Stacey Simms  35:14

if you haven't told me something good story, please send it my way. Stacy at Diabetes connections.com or posted in the Facebook group Diabetes Connections, the group. I feel like this month has been busier. And not just because it's diabetes Awareness Month. I'm actually I there's stuff going on. I'm doing panels. I'm taping things more than the podcast. So it's kind of fun. And I'm feeling more energized than I have been in a while, which is nice. This weekend. I'm participating in the healthy voices conference. This was supposed to be in the spring, I think we're supposed to be in Dallas. I mean, I can't even keep track of the number of airline tickets. I had to reschedule, like most of you. But I'm excited because I'm not just talking about diabetes. I'm actually not even talking about diabetes. I'm talking about podcasting. And I'm talking about teaching podcasting. And I will be teaching health advocates, patient leaders how to podcast and how easy it is, you know, not to be afraid of it, how their voices are so important, but truly, it's not an esoteric, you know why you should podcast or your voice matters, which it very much does. It is down and dirty. You plug this microphone into this program. Here's how you get your RSS feed on Apple. I'm thrilled to be doing this. And if as you listen, you know somebody who wants to hear more about that stuff. podcasting is obviously my passion and I love helping more people get started. As this episode airs. I believe it will be tonight, I am taping something that will be for air in December. It's the annual Wait, wait, don't poke me, which is a game show that I do for friends for life. It is a take off of the NPR show. Wait, wait, don't tell me. I love it so much. We have so much goofy fun, and you'll be able to hear that you'll be able to watch that, if not at the conference in December. Shortly thereafter, I'll make it public and we always have a good time. Please remember that all this month you can get the world's worst of diabetes mom real life stories of raising a child with Type One Diabetes for a big discount for dollars off at Diabetes connections.com use the promo code November, he makes a nice gift for the holidays. Boy, I'm so bad at this advertising stuff. But you can go ahead and read the reviews on Amazon. You can purchase it on Amazon as an audiobook or an E book or head over to my website and get the discount. And I forgot to mention if you buy it off my website, I'll sign it for you. There's a little form on the on the very bottom of the order form. When you fill it out. It'll say order notes and just put if you want me to personalize it, or anything you want me to write, assign them all but if you put it in there, I will personalize it for you. thank you as always to my editor john Buchanan from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Benny  37:52

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

Nov 10, 2020

Staying in the US Military ater a type 1 diabetes diagnosis isn't easy, but it can be done. Meet Jason Cyr. Diagnosed in 2011 while deployed in Africa, he was able to return to the Army and retire on his own terms a few years later. Jason is an élite cyclist and now a cycling coach.

Stacey mentions another veteran who was able to stay on active duty after a type 1 diabetes diagnosis. You can listen to our episode with Mark Thompson here.  

In Tell Me Something Good diabetes month stuff, a big milestone for the college diabetes network and a new podcast about diabetes and mental health.

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

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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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 auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:28

This week, we're celebrating Veterans Day by sharing the story of Jason Cyr. He was diagnosed with type one while serving in the US military deployed in Africa in 2011.

 

Jason Cyr  0:40

You know, I was like oh my gosh, this is like my career is on this trajectory to continue to serve whether it's special operations or just back to the regular army. I really enjoy this I started because I really love working with soldiers mentoring soldiers leading soldiers and I was like this is all over now. So now what am I gonna do?

 

Stacey Simms  0:56

Cyr was able to stay in the military. He shares that story what he's doing now and why I have a photo of him on a unicycle

In Tell me something good. Lots of Diabetes Awareness Month stuff and a big milestone for the college diabetes network.

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 your host, Stacey Simms, and 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, we are getting close to his 14 year diversity. My husband lives with type two, 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.

It is of course diabetes Awareness Month. So there's lots of things you're seeing if you follow me on social media. I'm posting as I do every year, photos, stories of people in the Charlotte, North Carolina area where I live, who live with diabetes. And I also and this is the first time I'm doing this in diabetes Awareness Month, I'm running a contest, I'm running two contests, and they have started as this episode first airs, if you're listening to it, the week of veterans week of 2020, the contests are going so I'm not gonna spend too much time on them here because they are social media only one of them is in the Facebook group Diabetes Connections, the group you have to be in the group to take part and the other one is on my Instagram and Instagram for me is only Stacey Simms, I do not have a separate one for the show. It's enough. So you get pictures of me walking my dog and pictures of my husband cooking and diabetes awareness stuff and podcast stuff all in one Instagram feed.

I want to give a brief shout out and thank you to the companies that are helping out with the Instagram contest. This is a multi company prize giveaway, we've got a lot of people taking part, it's possible that I may add to this list, and I will certainly revisit it. But big thank you to the folks at NRG bytes. Pump Peelz RX Sugar, Dia-Be-Tees, Wherever EuGO, T1D3DGear and GTTHL Apparel and to the world's worst diabetes mom, the book we're giving that away to I will list all of those fabulous people with links to the companies in the show notes Just go to Diabetes connections.com. But the best way to find out more about them is to head on over to Instagram and take part in that contest. big thank you to everybody for taking part in that.

Kind of a subdued Diabetes Awareness Month, I think for many people with the election in the US and just a lot of diabetes burnout out there. So I hope the contest is a bright spot. But I'm also doing a panel that is this Friday, as you listen on November 13. And that is with my friends at One Drop. We've put together a great panel, we're going to be talking about community, how to get more involved, what we get from community and some surprises there. And we are talking to people with type one, type two and parents of children with type one. And that's going to be a lot of fun that is live on the Diabetes Connections Facebook page, and One Drop will be amplifying it as well.

And speaking of One Drop Diabetes Connections is brought to you by One Drop and I spoke to the people there. And I've always been really impressed at how much they get diabetes. It just makes sense. Their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. 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 delivered. 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 a member of a very small club. Not only was Jason Cyr diagnosed with type 1 diabetes while he was in the military, he was allowed to stay in. And you may recall, I met Mark Thompson last year I spoke to him last November. And until this interview, Mark was the only other veteran I've ever talked to personally, who was able to stay in the military. After a diagnosis Mark story is slightly different. His career path after is different as well. I will link up more about mark in the show notes for this episode, you can go back and listen to the prior episode, and learn more as well. And those show notes and the transcript as always, at Diabetes connections.com.

Now the military policy in the US is pretty straightforward for enlisting, you cannot enlist in the military with a chronic condition like type one. But there is just just a bit more wiggle room if you're diagnosed while you're already in. So Jason Cyr was diagnosed while deployed in Africa. And he thought as you can understand that his symptoms were you know, from the weather or the altitude or all of the extra activity, he always does big runner and a big biker. He's going to tell that story and what he's been doing since he retired from the military in 2016. Jason, thank you so much for joining me, your story is pretty remarkable. I'm excited to talk to you.

 

Jason Cyr  6:16

Oh, well, thanks for having me, Stacy. I really appreciate I don't know if it's a remarkable story. But I appreciate you saying that. I'm flattered.

 

Stacey Simms  6:22

You're the second person that I've interviewed or even have known with all the hundreds of maybe thousands of people that we've been lucky to meet the diabetes community who has been able to stay in the military after a type one diabetes diagnosis. So I'd say that's pretty remarkable. And I'd love let's just start right there. Can you tell me what happened where what was going on when you were diagnosed?

 

Jason Cyr  6:42

This was, oh, gosh, it was 2011. I was deployed to sock see the Special Operations Command Horn of Africa. And I was working in Kenya for that organization, basically, helping to do some work with with the Kenyan military. And we kind of set up well, that kind of we had set up an American style Ranger School there. And I was helping a lot of the officers and enlisted folks just make that organization and that school run more smoothly. I am a Ranger School graduate. My career started actually, in the 75th Ranger Regiment, specifically a third Ranger Battalion, spent most of my time at sea company. But so I was there. And we were, were doing some training. And because we were living in the Mount Kenya area of Kenya, it was that elevation. If I recall correctly, this is going back a few years now. I think it was about 11,000 feet or living that. And so I and I was running every day, I was probably running 10 miles a day or something like that, just because I didn't have my my bicycle there. And I was running with some Kenyans. And so I just kind of had some signs and symptoms, you know, the polydipsia polyuria weight loss, and I just sort of chalked it up to Hey, I'm eating different foods, and I'm living in at times in an austere environment and running every day. And like I said, at elevation, so I just kind of dismiss those things.

 

Stacey Simms  8:06

And I'm gonna just jump in polydipsia polyuria really thirsty really have to pay?

 

Jason Cyr  8:10

Yeah, exactly. just translate for me and drink. Yeah, sure. And drinking like a gallon of water that you know, cup. You know, I don't know. I betcha I was drinking a gallon of water a day. But I just sort of chalked it up to like, Oh, it's fine. I'm a special forces guy. This is normal. You know, we're supposed to be able to just sort of, I guess suck it up. Anyway, I did have a medic with me on the deployment of Special Forces medic at 18 Delta. And he multiple times said, Hey, you should there's something wrong with you. You've got to go get checked out. So I think he had reached out to the our battalion surgeon and the surgeon had had come down to to actually go and climb Mount Kenya with me. Like on a weekend, a four day weekend we had off. And so anyway, we went climbing mountain and after that, he said, Hey, you got to go get looked at so I had a meeting with I think that defense attache at the at the embassy in Nairobi A few days later. And so I said, Yeah, when I go down there, I've got to meet with him. I've got to brief him on some stuff that we're doing. And I'll go get checked.

So I go down to the hospital after the briefing. And I present with like a blood sugar of like 840 I think, a one C of like 14. So at that point, obviously we knew something was wrong. superfit guy didn't think it was type two, but I was thinking I can't be type one. I'm 36 years older, or whatever it was 37 maybe at the time, wow. That of course starts a cascade effect where they evacuate back to I think we're in Djibouti at that time, and then eventually on to launch to Germany, where, you know, I got some more testing, done some more formal testing done and they said, hey, you've got type 1 diabetes. So you know, after probably a 15 minute pity party, I said Well, I'm gonna have to own this. So I went from there. Yeah, I guess at that point, I went to Fort Belvoir and Walter Reed Medical Center and got some more things done, figured out and then I went into the what's called the ward Transition battalion where they basically start proceedings to, you know, put you out or medically retire or whatever out of the military.

And I guess long story short, I had some great officers that I worked for a two star, and at the time a full bird Colonel that that just said, Hey, you know, you can stay and we've just invested all this time and money in you. I was just about through grad school later on while I was there, and they just said, Hey, we know we're going to retain you. So you go to this medical board, and the board decides, hey, we're gonna put you out. But if you can provide overwhelming evidence that you can stay in and do it safely, and you're going to have these folks that are going to, I guess, you know, not deploy you or put you in an environment where you can make a bad decision if you're hypoglycemic, or something will let you stay in. And so, you know, I think at that point, I was probably at 17 years or something like that. So I really only had three years ago, and my company command was up, I was in a staff position. So there's probably little harm I could do if I had a had a low or something like that. And I think at that point, I had displayed that I you know, had run a marathon I was racing factor racing and a category one and, you know, elite level of still doing some like UCI races. And I think I had displayed that I owned the disease as well as you can, in that short amount of time. And the board made a decision to let me stay in 220. I actually ended up doing I think, 23 years all together. So I ended up staying, and probably six more years, and then retired.

 

Stacey Simms  11:26

All right. It's an incredible story. I have questions. You mentioned, when you were diagnosed, you had a 15 minute pity party. And I'm just curious. Now I'm assuming that's a little bit of an exaggeration. I'm not taking anything away. If it was 15 minutes and moved on. That's fantastic. It's amazing. But what what really went through your mind, because you had been, as you said, 1718 years in, you didn't know yet that you were going to stay. You didn't know yet that you'd be able to continue with marathons and bike riding and doing everything that you did, do you mind and I hate to get so personal. But just from my own experience, I had a little bit more than a 15 minute pity party when my son was diagnosed. I'm curious what really went through your mind at that moment?

 

Jason Cyr  12:06

Oh, well, you know, I think after 17 or 16, whatever it was probably 17 years of service, you're kind of like, Man, I've done all this stuff. I've served in all these great units. Why me? I've always been super fit. I think I just, you know, I was like, Oh my gosh, this is like my career is on this trajectory, to continue to serve. And you know, whether it's special operations, or just back to the regular army, I really enjoy this. I don't necessarily serve I mean, obviously, I serve because I love my country. But I serve because I really love working with soldiers, mentoring soldiers, leading soldiers. And I was like, this is all over now. So now what am I going to do? Because this has sort of been who I am and what I've done. In a nutshell that that is what it is. That said, I can't say that I wouldn't if my if my son is diagnosed with Type One Diabetes, I'm going to have a longer than 15 minute pity party, for sure. I can empathize with you. 100%. I think for me, it was just like, hey, let's just get on with it. Let's own this as much as we can.

 

Stacey Simms  13:02

That'd be just be the perspective of a parent versus family

 

Jason Cyr  13:05

Yeah. It's very different than me. Yeah. But yeah, I don't even Oh, gosh, I can't even imagine. I mean, I think it's difficult day to day. And I'm one of these people who probably there couldn't be a better person to get it. In my own opinion, because I'm just one of those people who constantly looks at my Dexcom. I'm constantly, you know, weighing what I shouldn't shouldn't put in my body. You know, how hard should I go? I'm constantly thinking about the dosages of insulin I'm taking. So I don't think it would be there's a better person to get it. But yeah, I mean, that's generally what went through my mind.

 

Stacey Simms  13:37

When you went back when you were clear to go back into what you were doing. I'm curious, what was your routine at the time? Because we're talking about what, seven or eight years ago you mentioned Dexcom? Did you have that then I think I read you were checking your blood sugar like 20 times a day at one point, you know, take us through the routine of that initial first year back in the service.

 

Right back to Jason answering that question. But first diabetes Connections is brought to you by Gvoke HypoPen, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Gvoke 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 bear skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo joke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon comm slash risk. Now back to my conversation with Jason. He is talking about what it was like when he first went back into the army after being diagnosed.

 

Jason Cyr  14:58

I didn't have a CGM Immediately, and obviously, they didn't put me on a pump either. So I was, you know, manually doing this stuff, I was actually buying extra strips, you know, because I was testing like 15 or 20 times a day. And so the prescription that I had wouldn't, wasn't lasting that, you know, as long as it normally would. But part of the reason I was doing that is because I was also trying to figure out how to get back to racing at at least the highest level I could do. And at the time, I did have a USAC, or United States cycling Association, or USA cycling pro license. And so you know, as a pro, I was pretty mid pack fodder. But definitely fast enough that I was, you know, winning expert level races at Nationals, or at least getting on the podium. So I wanted to at least see if I could get back to that. And the way to do that, as far as I was concerned, is just collect data. And so my, my wife, who is a scientist helped me build this really wild looking Excel spreadsheet that had like linear regression on it. And I was just plotting points and figuring out, okay, if I go for 20 minutes at max effort, anaerobically, what happens to my blood sugar, and then if I go 40 minutes, what happens? And if I feed at 45 minutes, you know, what happens after that. And so I just was, I guess, in the course of training six days a week, I was just trying to figure out what happens, you know, if I have this much, you know, slow acting insulin on board, you know, what happens with that race effort. And then what happens if I have, you know, from working out or in a periodized stage, where I'm doing like six days of really hard training, and then taking a break? Is the insulin a lot more sensitive.

And, you know, I found out obviously, that it was, so just things like that I was just trying to figure it out. my saving grace really was that my wife, unbeknownst to me, wrote a letter to Phil Sutherland that at the time team type one, and he immediately invited me at the time I think we were Sanofi or Sena Fie team type one. So I was on that team, I think, for a year. And then I got on to the team Novo Nordisk elite team. And just being around type one athletes at training camp in Spain, or in California, we did, we did quite a few training camps over the, I think, five years I was with that team. That was a huge help, because it was just a depth and breadth of knowledge and institutional knowledge that I just didn't have. I didn't know any other type one, athletes, I just started asking those guys questions. And then I also had unfettered access to a an endocrinologist, who's who was on the team, and I just started firing off questions and trying to figure it out. And so the trajectory that I had for learning how to race and deal with diabetes and still maintain a 12, or 14 hour week training schedule was great. And I couldn't have done it. Or I mean, I could have done it, but it would have taken I take a lot longer to figure out those variables. So I think having access to those guys was just great.

 

Stacey Simms  17:55

When you got your Dexcom, having been someone who already kept their own spreadsheet, and pretty detailed ones, I'm curious what you've done with your data, I famously on the show, have the perspective of my son and I, we're really not big data, diabetes, people we are go by feel, you know, we do great, it's all good. But I love respect and marvel at people like you who really dial into it. So with that being said, when you got the Dexcom, and you opened up clarity, or you looked at these things, what was that like for you?

 

Jason Cyr  18:29

Oh, it was huge. It's even better now with the six. I mean, I started off with before, you know, went through the five transition to the six. And the six is just like it's almost overwhelming the data that that? Well, it is overwhelming, but it's just great. It's also really great to see the the amount of stuff that's available to you. And so yeah, I use the data all the time. It's great. When I'm racing, we just, we didn't have much of a race season this year. But I think I did five races, and three of them were enduro racing, which is the it's a mountain biking discipline that I focus on. And those races can last for four to six hours, seven hours, you're only racing stages. But you're you're riding from the end of a stage all the way back up the mountain to another stage to race back downhill with these chips on your bike where they they're collecting time. And so seeing the trends, whether it's going up or down or it's really good to see it helps immensely. And then I also look at that data after the race to see it because that racing discipline is very anaerobic and going full gas for the three this to seven minutes or eight minutes that the stage lasts. When you finish because your anaerobic, you know you're you're dumping glycogen in your blood, you're getting these huge spikes that you know your body has to test to deal with later on. And so knowing exactly how much insulin to take, after, say two stages and maintain a good blood glucose level is really important. And obviously you couldn't do that with just by finger sticks, trying to figure it out. So it just Yeah, the data that I get from that informs my decisions and racing, especially over a long day, or days leading up to it, I couldn't do without it. So I think the CGM is really important.

 

Stacey Simms  20:12

I must have sounded ridiculous to you, I promise we don't just wing it with my son,

 

Unknown Speaker  20:16

or just

 

Jason Cyr  20:19

also get that I am a total geek. I mean, that's I think there's reasons to push me to cycling coaching, because I just love looking at heart rate data and power data and overlaying these things and figuring out the puzzle of how we make someone stronger and faster.

 

Stacey Simms  20:33

Yeah. And I'll tell you what podcast listeners are my listeners are super data people, which I feel bad sometimes that I'm their host, because people that listen to podcasts in general want more and more and more information. So sometimes I'm like, sorry, but you know, we do the best we can, and want to go back if I could, to some military questions. Because there are so many young people who were diagnosed with type one who unfortunately, cannot serve in the military. This has been their dream. And curious what your perspective is, do you think that will change? I know that there's they're looking at it. I mean, there was a study a year or two ago that they were doing at Fort Bragg, with people with type one trying to kind of see how more modern diabetes technology might help. What's your perspective on that?

 

Jason Cyr  21:16

Yeah, I think, and obviously, I'm not a physician, or a doctor in any way, or probably an expert, I'm probably an expert on my body and how it reacts, I think that maybe technology could fix the problem. That said, I make silly decisions. When I'm hypoglycemic, and soda, I think, to put a combat leader in a position where they have to make life and death decisions. And there's potential that you could be hypoglycemic in the moment, obviously, is detrimental. And that's just on face value. And I haven't looked at how the technology could change it. But I will say that it has made me much more aware of highs and lows just because of the alarms that are associated with a continuous glucose monitor. So yeah, I think it's possible. Yeah, for sure. But I would let you know, the experts make those decisions that said, I can empathize with someone who just really wants to be have a career in the military, because it's made me who I am. I mean, it does. Obviously, my military service doesn't define me as a person, but it is a huge part of my life. There's very few moments I will say that I did not enjoy in my 23 plus year career in the military. So yeah, I hope that we get to the point where that's technology fixes that or perhaps there's a cure someday, I certainly wouldn't enjoy that. Because I tell you what, the first thing I'm gonna do is eat a whole cheesecake.

 

Stacey Simms  22:39

When you return to the military, if your diagnosis what you do, what was your job? What were your duties? Um, I

 

Jason Cyr  22:45

think what was my first my, I think I was the, the Operations Officer for this critical infrastructure protection Battalion, which we started, we use a lot of 18 series, guys. 18 series guys are special forces, guys. And we modeled that program off of what the defense Threat Reduction agency does. And they typically use a, or at least in the past to have I'm not sure what they do now. They use a soft guy like a Seal or a Green Beret to do the targeting piece when we look at how we would defeat or take down like, say, a facility. And so I was I think I was an operations officer. And then I moved to the executive officer, the deputy commander of the that critical infrastructure protection Battalion, and I spent the rest of my career there, basically, because I was working for these two officers that wrote letters recommendation that keep me in the military and so that I finished my career out there. And you know, probably one of the reasons I did retire is I was never going to go and command a combat unit ever again. That was not going to happen. You know, I wanted to be obviously I joined the Ranger Regiment and then spent time as a special forces guys starting as an 18. Charlie, which is a special forces engineer. You know, I did those things because that's what I wanted to do.

 

Stacey Simms  23:55

You mentioned that now you're coaching your coaching other cyclists? Yeah, correct. How so? How is that going? And I'm struggling to think of how to ask this because you started doing that during this pandemic.

 

Jason Cyr  24:06

They I did and I have to say it's been it's been incredibly successful. The company is cycle strategies. We coach road cyclists, cyclocross, but we focus on you know, the mountain bike discipline, so enduro, downhill, cross country, mountain biking, and I thought, hey, because we're in the middle of a pandemic, this will give me some time to get my feet on the ground, figure out the business aspects, you know, subs, figure out the books, figure out how we're going to deliver the coaching process, and it's been busier than I ever thought maybe that's that is because of, of this. In the process of coaching. Most of it is online, I use an online platform called training peaks to coach my athletes, and I do do the other side of the business is the skills piece. And so I do do skills training with adults and kids, but we're wearing masks. I don't touch it. You know, we don't there's no contact. We just I'm really trying to do our best to stay six feet away in cycling is sort of a socially distance thing anyway. So

 

Stacey Simms  25:06

it's been amazing though, because cycling has been so popular. I mean, it's been more and more popular every year. But during the pandemic, we tried to get my son's bike repaired. And it was unbelievable. how busy everybody is there at a party. You know, everybody wants to bike ride right now.

 

Jason Cyr  25:21

Yeah, yeah, I know, our local bike shop has had a really difficult time, trying to come up with way logistically to come up with ways to find parts for folks and just keep the item. Yeah, so it's been great for the sport. I think it's Yeah, it's helped me with a few clients that have just decided, Hey, I'm going to take up cycling, I really enjoy this. Oh, I think I need a coach. And I'm getting an email. And yeah, it's, it's, it's been great. I love it.

 

Stacey Simms  25:46

What is your advice for people with type one who are reluctant to get active? Because it is a lot of work? And frankly, even with all the technology, there is still some fear, right? It's hard to do a two hour bike ride without going low. If you haven't done that already.

 

Jason Cyr  26:03

Yeah, my recommendation is, well, first off, I just think living a healthy lifestyle helps you control your blood sugar, much better. And isn't that the intent, obviously, we don't have a pancreas that functions, at least that part of the pancreas doesn't function properly, to provide insulin and the glucose back in the cells. And so exercising helps you a treat some of that out of your system to help to put it back in. It makes you more responsive to insulin. And again, I will full disclosure here, I'm not a physician at all. I'm not an endocrinologist. But that has been my experience. So yeah, that's the first point is it really helps me at least control my blood sugar by just exercising and being consistent about it. Second, it's, it's just a healthy thing to do. And the third thing I would add is that taking it slow. So you may start with 15 minutes of writing and see how your body responds to that. And then add another 15 minutes until you get to an hour something that would be my recommendation. And I just feel like it's a great way to live. Anytime I'm sedentary, I am now chasing numbers. But if I just stay active, generally active and I'm not saying I go out and you don't have to go out and train for two or three hours every day. That's nice. And I know folks that do do that. But I don't do that. I may go for a couple hour ride to three times a week. Otherwise, I'm just doing an hour and maybe a little bit of weightlifting or something in nowadays in the garage.

 

Stacey Simms  27:27

What do you still like after all this time about riding your bike about cycling?

 

Jason Cyr  27:32

Oh, yeah, that's a great question. I don't know I'm sure my wife would have. She would say I'm obsessed. I don't know. All things. two wheels. We have dirt bikes. We've got cyclocross bikes. I even got a unicycle this year, as a way to figure out how to work on some balance. I don't know I think for me, cycling creates an experience where I can think about the day I can decompress. I've always used cycling when I was in the military, especially command to decompress. So I would come home, I get on my bike for an hour, and I go just smash out some laps, and really get my heart rate up high a few times, do some intervals. And I would be completely decompress to come home and have dinner with the family and being a good husband and a good father. So for me, I think it's just a bit of an escape, perhaps the endorphins that are released in the process of of executing some physical activity. I'm not sure but I do know that I do a lot of thinking. When I'm while I'm writing,

 

Stacey Simms  28:27

how's the unicycling going?

 

Jason Cyr  28:29

Good. I took it took me a solid hour of falling before I figured it out. I put knee pads on and shin pads is pretty funny. The helmet everything. And I just went out there. I just started getting after it. But now I can ride all the way around town on it. Wow. Sure, my neighbors thought that I was

 

Stacey Simms  28:48

gonna say does anybody stop you? Or take Oh, yes.

 

Jason Cyr  28:50

Well, interesting enough. My neighbor lives right across the street. He's a really cool guy. He's probably in his maybe mid 50s or something like that here. This is all Jason Let me try that thing. And as I said, God, be careful this thing you'll get hurt. And he jumped right on it and wrote it right down the road massive. Oh, look at that. That's awesome. And he knew, you know, he, he had spent his his youth riding in them. But I didn't know that. So I thought it was great. I was amazed. That's awesome. That's fine.

 

Stacey Simms  29:16

Yeah, you just cycling isn't the kind of thing that you just jump on and go, that's somebody who had a little bit of experience?

 

Jason Cyr  29:21

No. And I've got a few kids that I coach, and they all ride unicycles. So I said, Well, hey, you know, if they're gonna do it, I've got to figure this out. So every time in between, like after races or before races, they're just riding around on the unicycle. And I have to say, what it really engages your core. I thought that was really cool. And then the second piece that you get out is this great building of motor skills, and motor schemata or proprioception that you're kind of building and so the balance that comes from that is great for cycling, especially the offer of disciplines.

 

Stacey Simms  29:52

So listen, I went all over the place. Was there anything you want to talk about that I didn't mention?

 

Jason Cyr  29:56

No, I would I would add that, you know, thank you so much for letting me You know, I guess, Share, share my story. I don't think it's remarkable. I'm flattered that you think it is. The last thing I would add is that service and the military and service to your country is one, it is just a great privilege to lead and serve one serve, but to lead and be given the great responsibility to lead men and women, I think is just it's a privilege, really, and I wouldn't have done anything else had I had a had an opportunity. I just I've really enjoyed my service to the military and just serve with all those people. Obviously, there's ups and downs. You know, I've lost friends along the way, you know, in Afghanistan and deployments, and just other places, training accidents, those kinds of things. But it's just been a great opportunity. And, and I enjoyed every bit of it.

 

Stacey Simms  30:42

Well, we can't say thank you enough for your service, and how much we appreciate everything that you've done. And thank you so much for coming on and sharing your story. And if you don't mind me asking, I would love to have a unicycle picture. Oh, sure. Next time you're on.

 

Jason Cyr  30:56

Absolutely. I've got your your number. I'll text you one.

 

Unknown Speaker  30:59

That'd be great. Thanks

 

Unknown Speaker  31:00

so much for joining me.

 

Jason Cyr  31:01

Thank you, Stacey. Thanks very much.

 

Unknown Speaker  31:09

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  31:14

More information about Jason's story, he was written up quite a bit for bike riding with the Novo Nordisk folks, as he mentioned, I mentioned that unicycle shot, I will put that in the Facebook group as well. Many of you who gosh years ago used to follow my blog may recall that my kids elementary school had a jump rope club. And stay with me, there's a point here, the jump rope club was featured, we put them into the Big Blue test two years ago, which was a wonderful effort from the diabetes hands foundation to get people to exercise and check blood sugar. And it was a really great outreach efforts. So the jumper club was featured in that. But another elementary school where a lot of my friends kids went, had a unicycle club. And that always blew my mind. Because, first of all, who had the idea to start the unicycle club, and it was very popular, and they did just as much with those unicycles as my kids did with the jump ropes we had, like 40 kids, fourth and fifth graders zipping around on unicycles. It was bonkers, but good for you. Cornelius Elementary School in North Carolina, we salute you. Tell me something good coming up in just a moment. But first diabetes Connections is brought to you by Dexcom. And we started with Dexcom back in the olden days before share. Yeah, there were two years almost, I think we used it before share. Trust me when I say using share and follow apps has made a big difference. Then he and I now set parameters about when I'm going to call him or text him you know how long to wait, that kind of stuff. But it really helps us talk and worry about diabetes less. You know, if he's away on a trip or at a sleep over, it gives me peace of mind. It also helps I love this if I need to troubleshoot with him, because we can see what's been happening over the last 24 hours and not just at one moment. The alerts and alarms that we set also help us from keeping the highs from getting too high and help us jump on loads before there were a big issue. Internet connectivity is required to access the separate Dexcom follow app. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

And tell me something good this week Happy Anniversary diaversary. Happy 10 years to the college diabetes network. I can't believe this organization is 10 years old. We have been following their progress from the beginning. The college diabetes network started when Christina Roth basically started a campus group by herself wanting peer support on college campuses. And then she expanded into a national nonprofit which only served the young adults it really was geared towards college kids. But as it grew, and Christina saw the need, it continued to expand and now includes information for high school students, college students, young professionals and people like me, parents and family who are trying to stay informed, stay calm, learn more about sending their students, their kids with T Wendy off to college. So congratulations to the college diabetes network with more than 224 chapters now on campuses across the country. They are just doing an incredible job. They have a bunch of celebrations going on this month. And Benny is he's a sophomore in high school. I'm trying not to get too far ahead of myself. I have learned with all these years with type one, you know, in my family, that while it's good to be prepared and think you know what's coming, you really don't know what each stage is going to bring with your child because every kid is different. So I've stayed away from college type one stuff as much as I can until we get just a little bit closer. another bit of good news this month. The diabetes psychologist podcast has launched and this is with Dr. Mark Heyman and I spoke to him earlier this year. And then kind of off the year we talked about his podcast and I'm thrilled that he took the dive It has done this, I will link it up in the show notes. There's just not enough in terms of resources right when it comes to mental health and diabetes. So kudos to him for launching this. He has launched it as a limited series. He has a bunch of episodes out, and we shall see if he continues, but I'm thrilled that he put these important episodes and good help out there.

And this last one isn't really a concrete Tell me something good, but it's just something I love. You know, every year, there are diabetes challenges on Instagram and Facebook, you know, social media stuff, I'm sure there's stuff happening on tik tok and snapchat that I will never say, but it's all about, you know, post every day, and they give you something to post. And if you're interested, I mean, we're almost halfway through the month. But there's still a long way to go. I'll link up a couple in the show notes. And I'm sure you've seen them on Instagram, but I, I love these. I don't participate anymore, because I have a lot of other stuff going on. And you know, it's Benny's type one. I mean, it's really not something I can take pictures of all day long anymore. I'm not taking care of him in the same way. But I love to see these posts. I don't care if you're posting twice in a month or every single day, your posts are seen. They matter. And they make me smile. They're not all happy posts. Certainly they're all good news posts. That's not what diabetes is all about. But it really is heartening to remember that this community is still the DRC it's the diabetes online community, and your voice matters, your pictures matter. So thanks for letting me take part a little bit in what's going on in your diabetes life. That way, if you haven't told me something good story, you can always reach out Stacy at Diabetes connections.com. And I regularly asked for submissions in the Facebook group, Diabetes Connections group.

A couple of reminders of things I've been telling you about in past episode First, the contests are going on right now I've got two contests this month, one on Instagram one on Facebook. So the Facebook one is only in the group. It's in our podcast group. But the Instagram one is on the Stacey Simms account, it's the only account I have over there. So definitely check those out. Again, links in the show notes, any app you're listening to will have the show notes. So you can always go back to Diabetes connections.com. And the second thing I want to make sure you know about is the ebook, Diabetes Connections extra. I'm giving this away for free. Yes, you do have to sign up for my newsletter. And if you already signed up for the newsletter, you can still sign up and get the book you will not get double the newsletter. Although, you know, would you really mind hearing from me more than once I know. But definitely sign up and get that ebook. I think it's really good for newer diagnosed families, for people who have maybe just started a CGM who have never really figured out what ketones are. And I think for veteran families, and really well educated people, let's face it, like yourself, probably who listened to this podcast every week. It's fantastic to give to the other people in your life, who may not really understand diabetes, because Diabetes Connections extra is full of conversations about the basic building blocks of diabetes management. And some people just learn better when they read a book, rather than sitting down with a grandma, or sitting down with your best friend who's interested and kind of explaining. And that's what I think it's really going to be good for. But

 

you tell me I'm interested to see what the reaction is to this. That is Diabetes Connections extra and we are giving it away for free, it will not be free forever. I'm going to put it on Amazon as an E book in a couple of weeks. Okay, thank you so much to my editor John Bukenas from audio editing solutions. And thank you so much for listening. It means the world to me that you're here week after week. I appreciate it so much. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Unknown Speaker  38:38

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

Nov 5, 2020

JDRF began this year by funding more research projects than ever before, but after COVID changed everything, what does the future hold?  We caught up with CEO Aaron Kowalski to ask what their mission to "cure, prevent & treat" type 1 diabetes look like in a time when fund raising is down and the future is unclear.

In Tell Me Something Good find out about two contests Stacey is running. One in our FB group (see link below) and the other over on Instagram.

We're celebrating 1,000,000 downloads!! Get your free Ebook "Diabetes Connections Extras" full of expert advice for managing insulin-dependent diabetes. Terrific for newly diagnosed families or caregivers and friends who want to learn more.

Get the Ebook here

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

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Episode Transcription (rough transcript - check back for edited version)

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, catching up with JDRF’s CEO to talk about what this year has been like, and what it all means for their mission and research going forward. I also asked if he felt it was a good decision to keep those fundraising emails going during a pandemic.

 

Aaron Kowalski  0:44

But the decision to continue to ask people to support us was not to have people feel pressured that they were struggling, but for the folks who could who had the financial capabilities to lean in and help us preserve some of the incredible mission momentum we have.

 

Stacey Simms  1:00

Aaron Kowalski is the first CEO of JDRF to actually live with Type One Diabetes. We talked about a wide range of topics.

Tell me something good a big milestone to share with you and of course, it is diabetes awareness month we've got contests to talk about. this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. I am so glad to have you here we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I'm your host, Stacey Simms, and my son was diagnosed almost 14 years ago, his diversary is in early December. He's a sophomore in high school now he was diagnosed as a toddler, my husband lives with type two diabetes, I do not have diabetes. But I have a background in broadcasting local radio and television news. And that is how you get the podcast.

It is of course diabetes Awareness Month, every year in the month of November. And we say that this is more for people outside the community, right, it's our chance to educate them about diabetes, because every day is diabetes Awareness Month once you have a type of diabetes, so I'm not going to do too many different things on the show for this month. But I have some efforts going to educate people outside of the usual suspects around here. I'm also going to be running two contests, I'm going to share all that information. After the interview one contest on Instagram one on Facebook, if you follow me, you will see them if you don't more information coming up.

I also want to let you know that I have released an Ebook. This is something I've been working on for quite a while. It has selected transcripts from the podcast, but it is in a beautiful, easy to read form. And the theme of the book is a comprehensive look at some of the questions that we all get asked over and over again. So I'm going to put a link in the show notes. It is free. Yeah, yes, sign up for my newsletter. If you've already signed up for the newsletter, if you already get it every week, you can sign up again, I promise you won't get to. But you will get the free ebook. If you remember we've been doing these Diabetes Connections extra episodes, where I put out an excerpt and then the much longer episode a couple of days after. That's where these transcriptions come from. So it's all about CGM, all about insulin all about ketones all about blood sugar lows, basic stuff that I think is really good if you're newer diagnosed, if you're looking for a refresher, or if you want to share with a caregiver or a loved one who wants to learn more, but might learn better from an ebook, you know, on their Kindle than from a conversation with you. We all know people like that. So I hope you share it. I hope you like it. Again, it is free. You do have to sign up for the newsletter, more information in the Facebook group and in the show notes Just go to Diabetes connections.com and you will see it linked up right in this episode.

Okay JDRF CEO coming up in just a moment, but first Diabetes Connections is brought to you by One Drop. And you know, when I spoke to people at One Drop, I was really impressed at how much they get diabetes. And it makes a lot of sense because their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. 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 delivered. 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 Aaron Kowalski. He has been the CEO of JDRF since the spring of 2019. Of course this has been a challenging year for everybody to say the least. And when the crisis first started, I think we all knew that nonprofits were going to take a big hit. As you will hear in the interview. I sent to Aaron and email with my reservations look I'm a supporter of JDRF, financially, and I've been on the local board. And I felt that fundraising as usual would be a mistake. I advocated for a fund that would help people who we knew were going to lose their jobs and would need immediate help. But I am not inside JDRF. I haven't been on any board with them for about eight years, maybe maybe a little bit more. But I thought it would be helpful to have some background of my opinion, and where I stand at the start of this interview. But I also wanted to let Aaron give a research update at a sort of a state of the state. So there's a lot going on here. But I was really thrilled to he came on and was so upfront, really answered my questions and gave us a lot of information. Aaron, thanks so much for spending some time with me and my listeners. I appreciate it's good to talk to you again.

 

Aaron Kowalski5:46

Hey, Stacey, thanks for having me on.

 

Stacey Simms  5:48

I'm not exactly sure how to jump in. I feel like everything I say about this year has become a cliche, but I'll barrel through it in that this is a year like nothing we've seen before. Can you give us a little bit of a kind of a state of the state of JDRF as we sit here in November of 2020?

 

Aaron Kowalski6:06

Sure. I think like everybody, the the the last number of months have been very difficult. And certainly it's been for JDRF. I wish I could say a few things. One is pre COVID. I had a meeting and this goes back into early March with our board of directors and I, I told them that this was an unprecedented time for research progress, and amazing advancements happening on all fronts of diabetes research. And I'm sure we'll talk about those. And then of course, as we all know, COVID ahead, and fast forward to November. And I guess what I would say is just that I've had to make some changes, we reduced our staff somewhat significantly, we have a number of chapters we have from over 60 to 29. But the intention, the mission hasn't changed at all. And all of these changes, were focused upon making sure that we could continue to maintain the momentum we saw and research and development of life changing breakthroughs to help people to one day security one day preventing one day better treating one day, and that's what we're focused upon is maintaining research and mission momentum. We're not going to abandon any part of the United States. In fact, we hope to engage with more people. It's really just about how do we structure JDRF most efficiently in the face of not being able to get together for walks and galleries and the different fundraising events we do. So I'm an optimist by nature. So I'm optimistic that we have a lot of challenges in front of us with COVID. Still, but Gosh, when we do talk about research progress, you'll hear that there's so much excitement happening right now. And we we're doing everything we can to keep that going.

 

Stacey Simms  7:52

Well, let's just jump in and talk about it now tell us some of the research projects that are ongoing, that has not been affected by COVID. And in fundraising and things like that.

 

Aaron Kowalski8:02

Yeah, I think the good news is research has progressed, even in the face of COVID. We we've monitored this, we fund research in the United States, of course, but we also fund research in 20 other countries, and depending on the country, depending on the lab, the state, we are seeing research be done. It's not perfect. It's not 100%. It's not pre COVID levels, but it's still good. And you know the way our mission accelerating life changing breakthroughs, to cure prevent better to to end on each of these fronts, we're seeing incredible progress. Of course, many of you know that I worked on artificial pancreas for a long time. My brother and I are using a control IQ systems, we looped for a long time, you look at control IQ, which was amazing FDA approval, which spun out of research that we funded with the team at UVA, the 770 G, and I'm proud to have funded some of the work that went into the hybrid cluster, but Medtronic, the Insulet system that's coming down the pike is some of the work we funded at UC Santa Barbara and now at Harvard. So you know, the devices, these better treatment options. You and I have talked about this. I mean, it's a pretty life changing. And um, I literally almost took a picture of my blood sugar this morning, because I was like, gosh, I never could have done that before. Yeah, and here I am, you know, cruising at 100 for seven straight hours overnight. Yeah,

 

Stacey Simms  9:26

as I've mentioned, I have a teenage son who were supposed to be in the throes of the worst years of type one and instead he has the best time and range, the lowest agency and the least amount of work he's ever done. And it's it's just amazing to me.

 

Aaron Kowalski9:42

It's it's something I'm really really proud of and but some of your listeners might know that my brother has severe hypoglycemia problems. It was and started with diabetes when there was urine testing. And here we are now living a totally different life. And that is Yeah, of course, the JDRF was founded to cure to one date. And that's our number. That's our North Star. That's that's our number one goal. But in the meantime, I often said particularly back in the beginning of that project, when there was some controversy, if we should do it, we need to be healthy when there are cures. So the advancements that are happening on devices are awesome. And if we continue to push on that front, you may know that we have a big project with Tidepool bringing loop the DIY solution, through FDA in a Tidepool loop form, which will allow for a plug and play of sensors and algorithms and pumps, I'm really excited about that we have some projects and better infusion sets and faster insulin. So on the treatment side of the equation, JDRF is still focused there. What I would say though, is in the face of COVID, we realized that I don't want to say our work is through because we will continue to focus there. But there are a bunch of companies out there Medtronic Tandem Insulet, you name a title. So big foot, we realize that we can start to pass the baton, we have started to pass the baton on, on that work, and we're super excited is really on the work on preventing and curing to end to end cures. And we're gonna talk about why I pluralize that, because that's where the incredible action and it actually reminds me of the early days of the artificial pancreas project when people said, Oh, you've been hearing this forever. I've been hearing about an artificial pancreas for 35 years, you know, what's different now. And it was different. The science had moved the the the tech technologies had moved. And here we are now using hybrid closed loops. I see cell therapies and preventative therapies as being in a similar place. And I think the next coming years are going to be transformative on those fields.

 

Stacey Simms  11:52

All right, take us through a couple of those projects, if you could, because I'm with you. That sounds exciting.

 

Aaron Kowalski11:57

Yeah. Okay, so the first thing I'll start with cures, we always say we're gonna find a cure. And I think when I talk about this, there is a skepticism because people have been, you know, there's always I was promised five years or 10 years. And why was that? And so I get into often when I when I talk and you know, I'm sure your listeners will have similar questions is, when, if you step back in time, and think about the JDRF in the 90s, the decade of a cure is what they called it. Why did they say that? And the reason was, the people were being cured, and they were being cured through islet transplantation. So many of your listeners have heard of islet transplantation, somebody dies, they donate organs, one of the organs of pancreas, people can now harvest cells out of the pancreas and transplant them into people via an injection, and it actually restores normal blood sugars. You've probably heard of the Edmonton protocol, Dr. James Shapiro JDRF, worked for a whip and continues for decades. If you meet somebody who's had an islet transplantation, they will tell you they are cured. They're a one sees completely normalized. They don't take insulin, they don't test they can eat, you know, food and don't have high blood sugars. The downside is they take chronic immunosuppressants, and it requires an organ which is a supply demand issue. We know any organ donation is either always big lists. So you know that this idea of I was promised something that wasn't real is not exactly accurate. We could cure people and in fact, I was with Dr. Shapiro last year, he has people who have been off insulin for 20 years with an islet transplant. So that shows that it's possible.

 

Stacey Simms  13:52

Right back to Aaron. He'll finish that thought in just a moment. But first diabetes Connections is brought to you by Gvoke Hypo Pen and almost everybody who takes insulin has experienced a low blood sugar and that can be scary, but 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 a new visible needle. That means it's easy to use. How easy is it you pull off the red cap, push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk. Now back to Aaron Kowalski talking about pure research.

 

Aaron Kowalski14:43

And the reason I say cures is very similar to the you know the artificial pancreas work we did back in the day. I published a paper in I think 2008 and I said there is no single artificial pancreas. There are going to be a series of different solutions. Pump turns off insulin pump the proactively turns off insulin pump that lops off highs and lows, etc, and so forth and getting more and more sophisticated. And we call that the JDRF roadmap. Similarly, there's not going to be a single cure to type one, they're going to be multiple approaches. And that's where there's huge excitement because if you look at for example, there are multiple groups moving into human clinical trials of what I would call modern islet transplantation. Modern islet transplantation means enough cells for everybody, because now we're using stem cell derived eyelets, instead of what we would call calavera. Guy let somebody who passed away and donated their pancreas for so now via stem cell derived islets, you have an unlimited supply source. And it's not just one group that has an unlimited supply source. We have Harvard, Novo Nordisk University of British Columbia via sight, UCSF University of Sydney, there are multiple groups that can make stem cells into eyelids, that looks just like eyelids that came out of our person and can cure animals. So huge, huge advance. The other side of the equation is even a suppression. We have multiple approaches that are going to obviate the need for immunosuppressants. So this isn't getting real. I mean, this is violence and human clinical trials and seeing stem cell derived islet insulin production, these cells that are grown up in test tubes and petri dishes, transplanted into people now starting to make insulin. I was

 

Stacey Simms  16:33

just gonna ask those different groups that you mentioned, my first question was going to be what about human trials? So via sites in those are the other ones you mentioned moving in the next couple of years to human trials as well? Yeah.

 

Aaron Kowalski16:45

Oh, yeah. I very much anticipate other companies being in human trials in 2021. Wow. And that is awesome. Because, again, if you think about the process, and you know, why was I promised five years? Well, the process for a small group of selected people worked. But the process for a big group of people wasn't ready for primetime. And we needed different approaches, we needed stem cells, we needed immuno protectants. And now here we are in 2020. It's a, you know, there's been a lot of science since 2000. And we're going to see human trials now happening more and more.

 

Stacey Simms  17:23

We're going to talk about kind of today, and fundraising issues and some criticism in just a moment. But I also want to address I'd love for you to talk as well, and you already mentioned this prevention, because when I hear about to come up, and I'm very excited that I now know how to pronounce it. You know, that's one study that seems to be ongoing, doesn't even finished yet, is it?

 

Aaron Kowalski17:44

Well, there but you know, again, there are a number of these trials often happen in different stages and a patient population. So there, they've done some trials that have been very promising and they're ramping up and doing next gen trials.

 

Stacey Simms  17:57

Are there other prevention studies funded by JDRF, other than the one that I'm referring to, which is part of trial net, you know, Dennett USS,

 

Aaron Kowalski18:05

oh, yeah, we are working across the board. I mean, we have a number of different groups that are using different drugs that slow the progression of type 1 diabetes. You may have heard of Verapamil, which is actually a beta solid agent. ATG Novo Nordisk was a big program, the preventing to end and it's interesting when I talked to the community about this, sometimes, people bristle a little bit and they're like, well, what's prevention gonna do for me, preventing to end in caring to end are interlinked? No cell therapies are one way I mentioned cures. So there are there going to be multiple ways. Ultimately, what we want to do is get beta cell functioning, they are our own beta cells going again. And to do that, you have to restore immune balance. So what when you talk about sip lism AB, which is an immunotherapy JDRF, funded way back to the original Studies at the University of Chicago. Now legendary scientists, Dr. Jeff bluestone and Dr. Kevin Herold, that drug is now owned by a company called prevention. And they're going to for FDA approval in the current data delays type one for at least three years, and probably we'll see even longer in a number of people. So we're looking at Temple lism ab, we're looking at a variety of different approaches. And I just really want to convey to the listeners that one, even if you have full blown type 1 diabetes, like my brother, I mean, this these advancements are hugely important for future cures for TMD because he can't share to you one day, you know, aside from an immuno protected stem cell, but if you want to do it, quote unquote, true qR lights, you know, you restore your body to what it used to be, you need to restore immune balance, and that's what these drugs are aiming to do. The other part that I think is really important to remember is Type One Diabetes is a genetic disease. You know, most people don't Understand that, unfortunately, that the risk for my kids is 15 times the general population, the next generation of people in our families, we need to stop this disease. And that's, that's the reason. So it's curing to one day, it's preventing the actually going,

 

Stacey Simms  20:18

there are gonna be people listening who say a genetic disease. We never had any type one in my family until my child was diagnosed until I was diagnosed. But it is obviously a very strong component, right?

 

Aaron Kowalski20:28

Yes. So I the way I describe and answer that question, because it comes up, every single talk that I give, is just through math, the general population have about a four in 1000 chance of getting type 1 diabetes point 4% will get to end in the US, my kids have about a 5% chance of getting to five and 100 versus four and 1000. Now one of my good friends, Dr. Corey hood at Stanford, who's a psychologist, he says, Aaron, he's got to convey that the risk is that odds are 95% of its won't get it, even if you have a genetic risk, which is a glass half full, right and true. But just play that out from a Why didn't I have it in my family? So if five and 100, get it, you can say okay, insulin has been around for 100 years before that every single type one person died. So in your family, how many people are there in your first you know, your immediate family? And how many generations are there, you can just count, you know, so just say there are three kids and each generation, he may have like 12, nine to 12 kids. So if you see what I'm going here is the odds are even if you don't have the genetics, if you have the genetics, fortunately, most of the kids won't get it. But that's, you know, cold comfort to the ones who do like my brother, I was second. So I guess debate. And if you went back further, if we had through ability to look back in time and say, good kids die, pre 1921. In your family tree? The answer is almost certainly Yes. The kids died, because they didn't have the insulin to survive. So you know, five and 100, if you're a male with type one, three, and 100, if you're a female with type one for your kids, is, is elevated. And unfortunately, we're seeing the incidence of type one increasing for reasons we don't understand. So that's the simple kind of walking through the math that hopefully that makes sense. Because even if you don't have a family history, you probably do have a family history, you just don't know about it.

 

Stacey Simms  22:41

I'm gonna move on to some closing questions unless you want to focus anymore on research, or was there anything you wanted to mention?

 

Aaron Kowalski22:46

Yeah, I think the only other piece that we didn't talk about is I mentioned Cori hood, and psycho social, you know, and this is really wasn't related to COVID, before COVID. But we're certainly seeing more challenges with the emotional side have to end. And I think a lot of people don't appreciate that JDRF is now as part of our program focused on psychosocial aspects of diabetes. Now, this is kind of the unspoken part of the disease that affects everybody. And and I just want to put it out there that after years of not funding research in these important areas, and my very strong opinion, we are, and we're funding fellowship to train up a number of new psychologists who specialize in issues, their take on specific funding research programs for kids and people who are really, really struggling with significantly higher one season decays, depression. That's one area that people don't often talk about. But I think every family goes through low points and some very, very low points. And that, put it out there that we're working and see this is an area that needs more attention. I think

 

Stacey Simms  23:56

that's great. You mentioned COVID, which is actually why we've been talking this whole time about it. Can I ask you a couple of COVID questions that we get all the time, you know, at the beginning of this year? There were so many worries about type one, there wasn't a lot of information that separated from type two, there's been a little bit more as the year has gone on. Can you talk a little bit about what you've learned about COVID? and type 1 diabetes? Is there new research information to say what it seems to have said to me from what I've seen is people with type one are not any more likely to get COVID. But of course, any illness will mess with your blood sugars, but it doesn't seem to be as severe as people with type two.

 

Aaron Kowalski24:35

Yeah, that's the data. The challenge for us here in the us is we can't collect data as well as many other countries because many other countries can collect from every one of the citizens in the country and and then analyze it whereas our healthcare system doesn't work that way. So when we gather information, like you just described, it's often coming for example, that was there's a big study in England. Look at this. We've worked through a lot of the Scandinavian data. Australia. I think you're that what we're what I would say right now is we do think that people are type one have the same risk of getting COVID as anybody else, it's not increased. The big question, there's probably plenty that people with type one are probably at higher risk for worse outcomes. Type two people seem to be more and that may have to do with the increased weight and type two people. But again, the via more information, I think the big question on why would somebody with type one do worse and you brought up one of the potential issues is just blood sugar, we know that when when you're sick, your blood sugar is harder to manage. The treatments can exacerbate if you're on steroids, bad blood sugar, and that can contribute to infection problems. And particularly in COVID, I was literally on the phone with a person in the field yesterday, you know, one of the hypotheses is people would take one over time get vascular issues, we took on a higher degree of risk for heart attacks and strokes. And there's a fair amount of discussion about covid being you know, the impact on the back skillet. Sure. And that would then be exacerbated by P one d. So, you know, it's obviously for everybody. It's scary. It's scary. For me, it's scary for my brother and my family and my wife. And we urge people to be be extra cautious. You know, one of the things I heard in the beginning of the crisis is make sure you have a very tight plan. If God forbid, you have to go to the hospital, because one of the early readouts that I got in New York City, was the diabetes care was being delivered poorly to people because most if you're not an endocrinologist, most doctors don't see people with insulin frequently. And that can exacerbate, you know, again, blood sugar levels and side effects. So yeah, it's scary. We're learning a lot. I think we've seen improvements of treatments of people in the hospital. But I would urge caution for type one commodity, have a good plan, if you do get sick.

 

Stacey Simms  27:10

I'm sure in a few years, we'll have some very interesting research from the countries that do track more closely, like you said, and will know a lot more. Let me move into a different part of this interview. And I should, as you listen, just disclose that I was on the board have my local JDRF for six years. I am a financial supporter of JDRF. I think those are important things to know. But I am happy to pass along your questions. And I had some questions of my own. Aaron, I'm sure you were inundated with emails and suggestions earlier this year, and I sent you one and I know it wasn't alone in thinking this. My question was, and I'll eleska to you now, you know, I know how important JDRF research is, I really don't want it to stop. But you could see at the beginning of this year, the financial issue, the the unemployment issue, the economic problems that this country was going to experience. And it seemed to me like it might have been an opportunity for JDRF to pivot a little bit and give people who desperately need it some financial assistance, I assume that was discussed doing something with supplies, insulin, affordability, that sort of thing. But instead, you decided to continue to fund research. Can you tell us a little bit about that thought process and why obviously wasn't a viable option for JDRF?

 

Aaron Kowalski28:28

Sure. So of course, this year has been brutal. As we lead off, it's been so hard for everybody. And at the beginning of the crisis, we knew that this was going to have a big impact on JDRF. Because we raised most of our money through events, when you can't get together for a walk or bike ride or a gala that that was going to cause us to not be able to fund as much research as we want to be decision. I there are a couple of interesting kind of pieces to your question. One is I think, you know, the decision to ask people for money, which was something that we talked a lot about, and our feeling was our mission to cure to end, prevent, improve lives didn't go away. And I put type 1 diabetes, the COVID didn't type one, obviously, that people are still struggling. And I can tell you, we've had a couple of deaths through gay a neighbor of mine, her son was just diagnosed last month. And this problem, our mission is still critical. So that this isn't to continue to ask people to support us was not to have people feel pressured when they couldn't if they've lost their job if they were struggling. But for the folks who could who had the financial capabilities to lean in and help us preserve some of the incredible mission momentum we have and had going in March and in February and we were seeing across the board so that that was the logic on asking Money. It wasn't intended, again to pressure people it was intended for folks who could. And and I often said it wasn't mutually exclusive, supporting COVID. and supporting T one t are mutually exclusive. So the second part, and this, I think gets into some of our work in insulin access, and how much of our mission is focused on making sure people have access to care versus research. And the board and I have talked a lot about this, the JDRF mission is accelerating life changing breakthroughs to cure, prevent, and better treat TMD and its complications. So if you think about our work and insulin access, it's not our core mission. And people will criticize me or JDRF sometimes for that, but that's what it is. And when I look at other organizations like ADA, or for all or beyond type one, we have different missions. So we've talked to JDRF, about how much more Should we do. So for example, we have a we were doing a ton on policy on insulin access, we think it's critical. But if we were to shift and make that our mission, we would have to change everything we do, we would rearrange our staff, we would probably like a bunch of scientists, and we'd hire a bunch more policy people. So really, what what I think you're getting at is what is the mission of the organization. And our mission has been since 50 years ago, security one day, keep people healthy until we get there through the acceleration of life changing breakers. And that's my optic focus, we will continue to do some of the other critical work like insulin in Africa and developing nations or in the United States for people who can't afford it. I've testified on the hill three times as in front of the Senate and the House, my brother had to his wife had to switch jobs because he runs a small his own small company, and they had a like a $12,000 deductible. So I understand that said, are missing that, essentially outside the messenger apps. And while we do it, it's not the core mission.

 

Stacey Simms  32:12

If I could devil's advocate for a moment, though, you said earlier in this interview, that you got a lot of criticism and pushback for the artificial pancreas project. And your rationale for seeing it through was we need to keep people alive until there's a cure. When one in four people are rationing insulin in this country. I don't think you have to change your mission to focus more on insulin affordability. And I would even say, Is there no way and maybe Listen, I'm a bit of a pie eyed optimist, and I am not part of the inner workings of JDRF or these organizations. So you can tell me that this is silly. Is there no way to while you're fighting for affordability on the hill? And you're testifying? Is there no way for JDRF to do some kind of assistance program for those who most desperately need it?

 

Aaron Kowalski32:54

Yeah, no, I hear you, Stacy. And we have looked at this. In fact, I rallied our team to look at and explore essentially insulin exchanges that would allow volunteers to donate insulin. And the challenges that we've faced, it have been really around the legal ease of donating a prescription drug. Again, this isn't our core mission. But I can tell you are in terms of our policy, time and effort and work, I would say it's pretty much our number one thing that we're working on, right, and looking at different ways to make sure and I've said it a million times, nobody should make the decision of food or rent or car payment or insulin insane. So it is a priority of ours even as it's outside of our what I would call the center of our Bullseye of our mission. We're devoting countless hours and dollars to try and to rectify and reconcile the problem. Yeah. And it's very, very frustrating to me. I hate that we're even having the discussion for that drug that is required for us to live. It's absurd.

 

Stacey Simms  34:06

Yeah, it's so interesting, Aaron to talk to you because you are not a and I mean this as a compliment. So let me get through the whole thing. You're not really a CEO kind of guy. Right? You are. You are the first CEO of JDRF. To live with type 1 diabetes. You are a scientist. your background is not in corporate politics. It is in science. You were obviously chief mission officer for a long time. I know you know what you're doing. So I don't mean it in this way. But I can't think of a more challenging year for somebody who is not a business school kind of guy, if that makes sense. Are you looking at this position? Are you still trying to approach it from a scientific viewpoint? Are you using skills that you didn't think you would have to bring to the table? I mean, I hope the the spirit of my question makes

 

Aaron Kowalski34:52

sense. Yeah, no. And that was a big question when I applied when I started The board that I thought I could could be CEO is, well, you know, you're not a financial person or having run a big field organization, and what my response was, but I, I understand our community, I grew up in it, my brother and I and my brothers been doing it for 40 years, I haven't done it for 36 years or something, you know, work with the companies work with the community work with our partners. The beauty of, you know, JDRF is we are a volunteer driven organization. And I get to work with some of the smartest, most accomplished business people who volunteer their time, because their family's been impacted. So I've certainly benefited as a new CEO, from an I never a million years thought I'd be facing a pandemic, the first year, I took this job. But in terms of the areas that I wasn't as experienced in my team members of JDRF, who obviously have incredible capabilities. And then our volunteers, our board, we had a group on the board who helped us with the financials, the analyses, as we're going through the crisis, the people issues, the real estate issues. So just like you lean in and help, we're fortunate that we have so many volunteers who can help and I've taken a lot of those learnings and the experience they bring to the table to help I think Jeff become, I've always been proud of that we're a very efficient organization, and I think coming out of the Christmas will be even more efficient. My greatest strength, I think, is just my understanding of the disease, and the community, which I can bring to hopefully rally more people to support the mission.

 

Stacey Simms  36:43

This is airing during diabetes Awareness Month, which I personally think is a chance to educate people outside the community. I mean, we're all very much aware of diabetes all year round. So I'm curious, you know, what would your message be to people who are not in the diabetes community? What would you like them to know?

 

Aaron Kowalski36:59

That's a really good question. Because I think, diabetes, you know, as many of the listeners know, diabetes, type one and type two get lumped together. People don't understand them. They don't understand their genetic, they think it's weight driven. And so there's a couple things. One is diabetes. type one and type two are a huge problem in this country in the world. And we need more people leaning into support better solutions. I mean, just think of the advancement of CGM. Now go back in time, and there was a big fight over CGM, you know, was this a useful tool? No, was it too much information? And here we are now, where it's becoming the standard of care, but it's taken a long time. And even in type two, it's still a good question mark, we need to deploy more resources. My very strong personal belief is we need to unite as a type one and type two community, you know, people with type one tend to, I hate to say it, but I kind of look down on type two people. And type two is a genetic disease even more strongly genetic than type one. People don't over eat themselves. And so type two diabetes, it's a huge myth to people with type two, a lot of overweight people that don't have type two, it's a genetic disease. It's a disease. So and the other interesting point not to get too off topic here is, is probably not just type one and type two, it's probably more of a continuum. Oh, sure. So this whole idea of eat, we are an under resourced community, whether you break it into type one, or type two or lump sum us together, we need more effort. And that's where I've talked to Tracy, the brown at ADA, beyond type one, our alliance with the type one, the Helmsley trust, you know, uniting and fighting for better solutions for people with diabetes. Now, if you're not in this community, you're paying, because a third of the Medicare budget goes to treat people with diabetes complications. So we need this country and to appreciate the diabetes are diseases that are genetic that need more resources, because there are solutions on the horizon that will help people and help our economy.

 

Stacey Simms  39:16

Yeah, I completely believe we are much stronger together. And it's amazing to me how much diabetes is it's like a joke to so many people. It's a hashtag, you know, here's my desert, hashtag diabetes, they don't get it. And we as a community, need to work together to continue to educate and fight those stereotypes and not add to them and not throw people with type two under the bus. So I won't get on my soapbox. But Aaron, thank you so much. And thank you so much for joining me and spending so much time with me and my listeners. I always appreciate

 

Aaron Kowalski39:43

  1. Oh, it's wonderful to speak with you and thanks, everybody. Hope to talk again soon.

 

Aaron Kowalski39:54

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  40:00

We hit a lot of topics in that interview, I will be happy to link up more information about JDRF research and other things that Aaron mentioned, you can always go to the episode homepage where there is a transcription, just go to Diabetes connections.com. Or if you're listening in a podcast app, you know, every single one of them is a little different. So I hesitate to say open it up there. But if you can see the show notes, if you can see the links, that's an easy place to but it's all on the website. If you have any trouble on any apps.

tell me something good coming up in just a moment. And I have some great news about the show to share with you. I'm so excited about this. But first 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 the share and follow apps makes a big difference. And Benny and I set parameters about when I'm going to call him track him down, you know how long to wait, that sort of thing. It really helps us talk and worry about diabetes less. And if he's at a sleep over or away on a trip, it really gives me peace of mind. It also helps if I need to troubleshoot with him, because we can see what's been happening over the last 24 hours. And not just at one moment. The alerts and alarms that we set also help us keep the highs from getting too high and jump on loads before they are 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.

longtime listeners will know that this is a labor of love. I have been doing Diabetes Connections weekly since June of 2015. I have a wonderful editor. Of course, I mentioned john at the end of every episode. But other than that, it's just me producing and hosting and booking guests and, and pre editing before I send it to john which drives him crazy. He says stop cleaning for the cleaning lady. But I can't help myself after a career in audio. And I say all that to bring you the news that we have hit a really tremendous milestone, and that is 1 million downloads and views. I am stunned. This number really sort of came out of the blue for me, because I know this may sound silly, but I can I can tell you we're close here, no secrets, I look at my podcast statistics with my hosting service liberated syndication or libsyn. And every show, you know, we look at the episodes and we look at the geography where people are listening and all that kind of stuff. And it keeps track of all of the downloads and unique listeners. And they're just really a wonderful and very accurate hosting service. So we ticked over more than 900,000 listeners. So I was kind of tracking to see when we hit a million. But then I realized that we have our YouTube channel as well. And while I cannot conceive of listening to a podcast via YouTube, because most of the time, it's just a static image. We have so many listeners over there, especially in the last two years. And sure enough, I clicked over there and we've had more than 100,000, listens views. What do you call it on YouTube, I'm going to say views. And that's why together, I'll say 1 million downloads and views.

I'm just so thrilled that I've been able to do this on a regular basis for so long with such terrific support from great listeners like you. And that number means a lot. That's a big one. So to celebrate, and this is great timing with diabetes Awareness Month because you deserve a reward for just living with diabetes or having somebody with diabetes in your family. We are going to be doing two different contests. Now these are going to start on the eighth. So that's a couple of days after this episode is released, you will get an email if you're on that newsletter. You will also see it in the Facebook group. Or if you follow me on Instagram, one contest on Instagram where I am Stacey Simms, and a different contest for people in the Facebook group. And the Facebook group is Diabetes Connections, the group so stay tuned for that, watch your email. If you are not already signed up for the newsletter. Like I said, click on the ebook link in this episode, or maybe you've seen the ads running in Facebook, or go to Diabetes connections.com the subscription thing should pop right up the newsletter subscription. But if it doesn't just scroll all the way to the bottom and it will have a little spot for you to sign up for the newsletter there. If you have any trouble just reach out to me Stacy at Diabetes connections.com. All right, here we go on to our second million downloads and listeners and views. Oh my goodness, I can't believe it. Thank you so much.

Next week, we will have a special episode for Veterans Day talking to a veteran who was diagnosed while in the service was able to stay in the service. This is only the second person I know has been able to do this. And then what he did and has done after and the accomplishments that he's made in real the change that he did. It's really an interesting story. And I'm excited to bring it to you and that is next week. Okay, thanks to my editor John Bukenas  from audio editing solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Benny  45:02

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

Nov 3, 2020

Have you seen your doctor remotely this year? Turns out that endocrinology is the number one specialty using telemedicine in 2020. We talk to Dr. Peter Alperin from Doximity about their recent study that says about 20% of all medical visits will be conducted via telemedicine this year. We also talk about what this means going forward, how to get the most of a visit when you can't be in person and why the heck doctors' offices still use fax machines!

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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 pre mixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:28

Hi, and welcome to another episode of our show. As this episode goes live, it is Election Day in the United States and we are not going to focus on that here. I am guessing many of you have actually found this episode in the days following its initial release. But whenever you are joining us I think this is a really interesting topic that you know many of us experienced for the first time this year. And that's telehealth.

 

If you are new to the show. I'm really glad you found us. I'm your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes. My son Benny was diagnosed when he was a toddler way back in 2006. He is now a sophomore in high school and we had one telehealth visit earlier this year. That was back in March, when everything started, we were able to go into the doctor's office for his summer and fall endocrinology appointments. I talked more about the experience, you know how it went some of the pitfalls that we ran into for that first telehealth appointment. And I do that in the interview.

Just a heads up this will be a shorter than usual episode is just the interview, we will have a regular episode with our segments with Tell me something good and all of that later this week.

For this episode, I am talking to the folks from Doximity. This is a professional medical network, sort of like LinkedIn for doctors. They had a study recently that said endocrinology is the specialty that uses telemedicine the most number one at everybody. And there are some interesting reasons why, of course remote or telehealth or whatever want to call it was huge earlier this year, it did peak around April or May. But there are some predictions that about 20% of all medical visits will still be conducted via telemedicine by the close of this year by the end of 2020. And that would represent about $29 billion worth of medical services. It is certainly worth watching.

So why endocrinology? What does this mean going forward? And why do doctors offices still use fax machines? Those are some of the questions I asked Dr. Pete Alperin, who joined us from Doximity. Dr. Alperin, thank you so much for joining me. I appreciate you spending some time with us today.

Dr. Peter Alperin

Thanks. Thank you so much for having me looking forward to it.

Stacey Simms

So a lot to unpack here with this study and why endocrinology but let me just back up first and ask you what is Doximity? What do you all do?

 

Dr. Peter Alperin  2:51

So Doximity is the largest online network of health professionals in the United States. And I think a great way to think about us is we're like a LinkedIn for healthcare professionals. We started off primarily with physicians, but we've expanded to include nurse practitioners, PhDs and a variety of other you know, healthcare professionals that range the gamut from, you know, optometrists, etc, to physical therapists and pharmacists and the like. We have over 70% of United States physicians have joined our network, and we have over, you know, 1.2 million members overall. And when I say it's like LinkedIn, you can think of it as LinkedIn, but tailored towards the healthcare professional. So we have a lot of features that are very specific to the needs of the people who work in the medical field. So we have HIPAA compliant communication, including faxing, we have our Doximity, dialer, video and audio products, which allow physicians to communicate easily securely and reliably with their patients. And then doctors can connect with each other much like you would on other social sites, and earn free continuing medical education. And they keep up on the latest Medical News. And we have a news feed, which is one of the biggest features on our site that allows the health care professionals to keep up on the latest and greatest in their particular fields, as well as just general information about the health care profession.

 

Stacey Simms  4:09

So one of the things that you've done with Doximity this year is well, I assume you do this every year is a state report, right? The 2020 state report and this is the state of telemedicine. I'm just curious, do you do that every year,

 

Dr. Peter Alperin  4:22

which is the second year that we've done this, and we've done studies in a variety of other areas. So we've done workforce studies, but we have a unique position in the market, being able to you know, call on the information and the opinions of like I mentioned over 70% of the US physician base and as a result, it gives us a really nice vantage point so that we can understand and really learn about these issues, particularly workforce issues.

 

Stacey Simms  4:48

So let's talk about the 2020 state of telemedicine report. And it's interesting because I have a great audience. I have a very smart audience but I also have an audience that is uniquely positioned to experience probably just as much if not more telehealth than anybody else in the country this year, so I'm really curious to hear these results because endocrinology was the number one specialty that utilizes telemedicine the most in that study, tell me a little bit more about that by number by percentage.

 

Dr. Peter Alperin  5:16

So it's by percentage, it probably isn't, it wouldn't be by numbers, mainly because there just aren't enough endocrinologist to make that a possibility. But the situation is that we surveyed, you know, 2000 of our physicians on our user base, and ask them a variety of different questions. And one of the things as you noted that that became clear was that endocrinology was one of the top professions it was the top profession, in terms of utilizing telehealth and it's that isn't surprising, mainly because endocrinologist take care of patients with diabetes, as well as other obviously, endocrine disorders, but it's a very chronic disease, heavy specialty and chronic disease is uniquely amenable to the telehealth platform, because patients with chronic disease need to be seen by their health care professionals on a longitudinal basis of you know, for many years forever. And it is something where you can have many light touches, so that you can have a dietitian who might touch the patient, the physician, you know, diabetes, education, and, you know, runs the gamut. And as a result, because endocrinologist obviously specialize and have more diabetes patients than the average doctor, it stands to reason that they would be the specialty that has been utilizing this the most. We've also noticed in our study, and you may have noticed this that chronic care visits were completed at a higher percentage on telehealth and other regular type visits, more acute care.

 

Stacey Simms  6:38

I'm curious, in the study, do you talk about the quality of these meetings because we've had telehealth this year, my son sees an endocrinologist, every quarter, we sometimes stretch it out, but we see every quarter. And we did one visit during this time that was remote, and it went fine. I had a little bit of you know, I have a we had a few issues, just getting some reports, it was fine. Did you talk about quality at all.

 

Dr. Peter Alperin  7:02

So the study didn't really dive into that I can tell you from personal experience, that you do need to learn how to do a telehealth visit, you need to prep your patients properly. And so it is very, very beneficial if you send patients at least the ones who have not had a visit before on using a telehealth platform to you know the different tips and tricks to be able to make that visit as ideal as possible. And then the physician themselves needs training to make sure that they understand how to interact, look at the camera, the variety of different things. So we didn't go into that in this study. But it is something that I know is important for all physicians and frankly, patients to have to kind of acclimate themselves to that communication platform.

 

Stacey Simms  7:46

Yeah, our biggest problem was the actual reports. My son uses an insulin pump, he uses a continuous glucose monitor, and they have separate reports that are you're able to get online. But you know, we had sent it or the office had called us. And here's the clarity report, login. Here's the T slim report, login. And then the doctor was online. He's like, nobody gave me anything. So I had to give him like my login while we were talking. It was really fun. We've known him for 14 years. So it was no big deal. But it was funny to have to. I think we were also his first visit that way. I'm sure it got better. But it was funny. You know, especially with diabetes, especially with type one, there can be so many technical things, if you're lucky enough to have access to the technology. Okay. Anyway, let's get back to the report. I know it's a little early to extrapolate, you know, from a report like this, but what do you think I mean, in on your network? Are physicians excited about telemedicine? Do they like it? Do they think it's going to continue?

 

Dr. Peter Alperin  8:38

So they do think it's going to continue? And I think they're excited as well. I think there was a little bit of trepidation in the beginning, because it was really thrust upon people. And I think there remains some unanswered questions. So let us sort of let me go into each of those. There's no question that telehealth is going to stay. I mean, we're the expectation is that there'll be $29 billion worth of telemedicine telemedicine visits by the end of 2020, and over 100 billion by the end of 2023. So this is something that is very, is absolutely not going to go away. And it's not going to go away because patients like it. And frankly, physicians are going to like it as well. The reasons that patients like it are is that it's it's quite convenient. And particularly for patients with chronic illness, or patients who have difficulty getting to the doctor's office, it can really be a lifeline. It's much easier to have additional visits over a telehealth platform and then have maybe a quarterly visit where the patient actually comes in to see you than it is to have that patient come to your office, you know, every few weeks, if I'm talking about patients who have you know, particularly brittle diabetes or you know, need to be seen on a more frequent basis for whatever particular reason. I think that if you look at the study, you know that it bears that out with the increase in the in the chronic care visits that you saw, and also just the satisfaction in general. Now, like I mentioned, there are a few kinks that need to continue to be worked out right now. As we noted in the study, the payments for these visits is not 100% certain going forward, although all indicators are that this is going to be made permanent. But you know, if I'm being accurate right now, CMS, for instance, is operating on waivers that allow you to build for the visit in the way that you would want to be able to all as I mentioned, all indicators are that's going to be made permanent. That's probably the biggest sort of thing that remains to be worked out. But private payers seem to be following suit as well.

 

Stacey Simms  10:27

Now, you're an internist. You're not an endocrinologist, but I know you've seen patients, people with diabetes. I'm curious what you think about the missing element of telehealth, especially as it pertains to chronic condition like this. And that's the person that's the in person relationship. And as a parent of a child with type one, as a wife of a husband with type two, the personal relationship that they have with their separate physicians is so important to their care. And well, I think telehealth is great, I would hate to see it take over. Right I really my my son, I were talking about this, and he felt the visit was worthless. It was not we actually made it he's 15. He thinks a lot of things are worthless. But we made basal rate changes, we checked in on certain things. But then when we were able to go back to the office over the summer, he thought it was a much better visit. I don't know from where I stood there was wasn't as dramatic a difference as he indicated. But I think he had a lot to say about it. I'm curious, from your perspective, as the physician, what you think about that,

 

Dr. Peter Alperin  11:27

you know, I think that there's never going to be a substitute for an in person visit full stop. But that said, I think it's like all pieces of technology, the key is finding the right place to use it. Because it's not about the technology. It's about the physician patient conversation and the care that you're delivering. And so the best technology is invisible, right, it disappears. And so that you really it's about that connection that you have. I think that like we talked about in your previous question, there does need to be some acclamation on the part of the patient and the physician in terms of getting used to this. But I still strongly believe that the overwhelming I guess you would call it, the fundamentals of it are really just on the side of telemedicine, it's efficient, you have the ability to touch more patients. Now, one thing that I've thought about is that a telemedicine visit is always easier with a patient that you already know. Yeah. So that's also another reason why I think that in the realm of chronic care which diabetes is squarely in the middle of, you're going to need to have that initial visit with the patient in person. But over time, having a phone call or a video visit is actually fine. Because you know, the patient and the patient knows you, it is a little trickier for an acute care visit, it's just a little bit the physical exam is a little bit more difficult. Obviously, in patients with chronic disease, you don't need to do a full physical exam with every single visit it really, you know, it obviously depends on why they're there and what their particular symptoms are. So I do agree that the inpatient visit will never go away, and, frankly, is probably a more satisfying visit, because I think humans are social creatures, and they really like that connection. But that doesn't mean that the telemedicine is somehow you know, inferior, or it doesn't mean that at all. And it also doesn't mean that that it's not going to stay, it's just going to have to be used in the right circumstance.

 

Stacey Simms  13:11

I hope they keep it in our local office, I think we could see switching our for yearly visits to to in person and to via computer, it was just you know, it's also a 45 minute drive. Yeah, it's a nice step to heart and you have,

 

Dr. Peter Alperin  13:25

obviously in a time of a pandemic, you are running the risk of infection of other people. And obviously patients with diabetes, many of whom are older, the run the risk of getting that infection are at higher risk of covid. And the whole nine yards. And the other thing is, is that you know, even when the pandemic is ending, let's fast forward, you know, a couple years, I still think it's going to be very beneficial for patients, particularly patients who don't have, you know, the means to come to the office that easily. So it's important to consider that as well.

 

Stacey Simms  13:54

I'm curious to one of the things that our doctor talked about was trying and this was way at the beginning, he was trying to figure out how to help patients do the kind of physical exam that he does in the office. In other words, looking at fingertips to make sure that you know, they're not poking the same finger or they're, you know, the fingers are doing okay for blood sugar checks, checking the sites, where a pump inset would go and teaching patients how to kind of do a self check, which a lot of people have never thought to do with diabetes. I haven't checked in with him because as I said, we went back in person and I know they're doing in person visits now. But I'm curious if things like that have come up maybe even in other practices in some of the chats and conversations that you've seen.

 

Dr. Peter Alperin  14:36

Yeah, I mean, both personal experience and then, you know, being at duck somebody I have a unique vantage point on the conversations that occur on our newsfeed where you'll see the you know, the the chatter back and forth about a particular article. The answer is there are great many things that you can do to help with the physical exam and this gets back to again, you know, having the patient be properly prepped, if you will, for that visit. So that they're in a comfortable seat so that there's good lighting, that they have loose fitting clothing, that they're aware of the things that you might do so that they have also, you know, the proper undergarments. So depending upon what the physical exam might be, but there are certain things you can't do like it's very difficult to palpate and do an abdominal exam right over the phone. And it's just it's a tricky part of the any, any physician will tell you, the abdominal exam has always been one of the trickier parts of any exam. It's also hard to listen to lungs, if you will, over the phone. But there are some things you can do. For instance, if a patient's complaining of abdominal pain you and they and their mobile, you can ask them to sort of maybe jump up and down and see whether or not that hurts, because really what you're looking for is a sudden jar, far from the exam that all of us learned in medical school, and probably far from the same level of sensitivity and the ability to diagnose things, but it certainly can help. But that's where the importance of triage comes in. And that's why having a front office that can understand when a patient needs to come into the office versus not come into the office is important.

And look, I've converted telehealth exams to in person ones where I've said at the end of the conversation, you know, this was great, but I think I still need to learn more, why don't you call the office and find out if there's a time you can come in in the next week, then that kind of thing. You know, it is being taken up by physicians of all ages. And I think that was a really interesting finding that, you know, typically technology is always adopted more more quickly, among younger people just across the board. Here's a case where that's not true, where it's physicians in their 40s and 50s, who are actually taking to telemedicine more quickly than physicians in their 30s, then one of the reasons that we think that that's true, is that physicians in the 40s and 50s are the busy physicians are the ones who see the, I hesitate to say in this in the those salad years of their life where they're raising families, and they have, you know, mortgage payments and life. And so they're working more, I also perhaps think that their practices are bigger, they're more comfortable with their patient base. And it takes a certain level of comfort, like we talked about with your patient panel, and the folks that you're caring for to have a telemedicine visit be just the most optimal thing that can be again, not that you can't do it when you're a younger physician. But when you're just starting out, you don't know quite as much. If you ask any physician, they'll tell you that the amount of learning that they did in their first three years after their residency training is just absolutely the most because that's when you can't turn to anybody else and say, hey, what should what would you do about this? It's your The buck stops with you. So you learn a tremendous amount when that happens.

 

Stacey Simms  17:29

You heard me laugh a little bit, because when you said older physicians, I was expecting you to say physicians in their 60s, perhaps even into their 70s I did not expect you to say physician 40s and 50s. I know, we're all well, you know,

 

Dr. Peter Alperin  17:44

it's a good point, you know, half of all US physicians are you know, over 50. And, you know, there's a probably a big wave coming of physicians or, you know, start to cut back.

 

Stacey Simms  17:56

Well, someone as someone who is pushing toward 50 very rapidly. I'm not happy to hear the older term being used.

 

Dr. Peter Alperin  18:02

I'm over 50. So it

 

Stacey Simms  18:05

is what it is. Hey, before I let you go, one of the very first things you said I made a note to come back to you were talking about Doximity and your type of the things that everybody can do. And then and you mentioned fax machines.

 

Unknown Speaker  18:18

Uh huh.

 

Stacey Simms  18:19

It says nothing to do with anything we've talked about. But I have to ask you, why are American doctors in our health care system still using fax machines? When nobody has been at home? nobody uses the technology anymore.

 

Dr. Peter Alperin  18:32

I mean, why? It's a fantastic question. And it has its roots. It's really it comes down to two things, but it has its roots in the HIPAA law. So most people on I imagine in your audience are familiar with HIPAA. A lot. Most people are familiar with it. But so that's the primary piece of federal legislation that governs patient privacy, it also governs communication. And when HIPAA was written in the late 90s, or mid to late 90s, the fax machine was ubiquitous. I mean, that was 25 years ago, but the fax machine was grandfathered. And therefore if I send a fax to another physician, or anybody that the communications and the security around that is just handled differently, legally, and there's more protections for it. So that's the first thing. So that's why faxes never went away. And then at the same time as electronic health records came about, and, you know, email became the primary sort of medium of communication that was not covered. And therefore there's all sorts of security protocols that need to happen. You need to use secure email and there's patient information. And because of those security issues, it's an a patchwork just to quilt of rules and regulations. physicians have just stuck with the fax machine because it's in every physician's office, and now it's on every physician's phone. It was the very first feature we created because it's the thing that positions us. I mean, I fax something this weekend, the sending orders to a nursing home for a patient who needed some medication changes and so from your phone from my phone And so that's what we offer on doximity is that ability to fax, receive, send sign and send it. So I never touch a piece of paper per se. But it all happens over a fax protocol. And that's actually what a lot of physicians do. So it's not always when you hear fax machine, it's still a ton of paper. But a lot of physicians have moved to E fax. So you see that as well. And I

 

Stacey Simms  20:19

guess as patients, we can do that, too. I had an effects account for a while, but I only used it for doctors. Exactly. I

 

Dr. Peter Alperin  20:25

know. It's a very interesting thing. And there you go.

 

Stacey Simms  20:30

I know you weren't expecting to talk about that. But it is

 

Dr. Peter Alperin  20:33

a great question. You know, we still have a huge number of our users who who use our fax machine. And it's the kind of thing that even if you're not a heavy fax user, you still need to have one because you need to be able to receive information from other physicians.

 

Stacey Simms  20:44

Well, Dr. Alperin, thank you so much for joining me, this was really interesting. And I hope you can come back maybe and let us know other things that you find in Doximity that are of interest to people with diabetes. Thank you so much.

 

Dr. Peter Alperin  20:54

Thank you so much for having us. It's an important study. It's an important time in medicine, and we appreciate you helping us get the message out.

 

Announcer  21:06

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  21:12

You can read that study from Doximity and some other information. I will link it all up on the episode homepage as usual at Diabetes connections.com. There's always a transcript for every episode in 2020. And we're starting to go back and fill those in for previous years as well. I'm asking in the Facebook group if you went to a telehealth or remote visit this year, and if so, would you do it again? I definitely would as you heard me say, you know Benny wasn't crazy about it. That's because he likes he's driving now he likes to drive down to the office he likes to see and be seen and he has a great relationship with our endo but I really think if we can get away with it we have to see the four times a year although I stretch it out probably like most of you so it's really three times a year just you know, you know you can work that calendar, but I think we could probably get away with one or two remotely and with Dexcom I don't need an A1C from him all the time. You can see the estimate, but we'll see how it goes. love to know what you think.

Thank you to my editor John Bukenas from audio editing solutions. Thank you for listening. We will be back in just a couple of days with a regular length episode with all the segments. I am doing a bit of a state of state with JDRF with Aaron Kowalski, who is the CEO of JDRF wanted to get his take on this really unusual year, what research is going to be stopped or or held up or even everything's going to progress but nothing is as normal with JDRF or anything else. And it was really interesting to talk to him and also let him respond to some of the criticism from the community that JDRF has been hearing recently. That will follow in just a couple of days, likely Thursday of this week. Until then, I'm Stacey Simms. Be kind to yourself.

 

Benny  22:58

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

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