Diabetes camp is looking very different this summer as almost every program has shifted to a virtual experience. We talk to the people behind Clara Barton Camp, one of the oldest and well-established D-Camps in the country. Sam Stevens was diagnosed at age 5 and went to Clara Barton that very summer. She says she basically grew up there, becoming a counselor and now a volunteer helping coordinate their very first virtual experience.
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Stacey Simms 0:00
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This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:23
This week diabetes camp all right this year is really different. I'm not here to spin it like it's not. But many camps across the country are getting creative, including the people at Clara Barton, who are hosting a virtual experience
Sam Stevens 0:34
that there are kids who look like me sound like me act like me have my shared experiences. Even if we don't get to meet in person. I still know that they exist. I still connect with them. I still make friends.
Stacey Simms 0:50
That's Sam Stevens of volunteer and counselor at Clara Barton. She was diagnosed at age five and basically grew up going in Tell me something good TV me and an incredible story of perseverance and survival around COVID-19. 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 will be so glad to have you won. I'm your host, Stacey Simms. And if you are a longtime listener, you know that I'm a huge fan of camp, diabetes camp for sure. But regular summer camp, you know, any kind of programs that give kids more independence and give parents some time to themselves, which none of us are really having any experience with this, because we're all at home together. But I do love camp and I was so excited to have an opportunity to talk about what diabetes camps are doing in these really difficult times.
Both of my children started going to sleepaway camp when they were seven, eight years old Benny started at age seven for a week long diabetes camp, and they were both set at age eight to go To what I call regular camp, a non-diabetes month long program, and I've talked about that in the past a little bit more and in depth about how we did that. But I actually want to talk about my daughter for a second who doesn't live with type one, because the year she was supposed to go for the first time to regular camp, and the youngest you can be for this camp is eight years old and going into third grade, I want to say, but you have to be eight. And it's an option at that age to do a two-week program, which she was all signed up for. But this was in 2009. And if you recall, we had another big flu scare that year, that was H1N1, that was the swine flu.
I'm amazed that more people aren't talking about this now. Or maybe we did and we've just moved on because been talking about COVID for so long, but they closed down a lot of programs for H1N1back in 2009. And in our area, certainly here in North Carolina. It was a big fear. Now it passed very quickly. It was nothing like what we're experiencing now. But her camp was canceled, and it was devastating. I mean, she hadn't even been to camp. So she didn't even know what she was missing. But you know, we had signed her up. We had talked about it, you know, what was that experience and both of my kids are super independent. So she knew she was going to really enjoy camp. So as they called it, Swine 09 happened, she still has the T shirt from this camp, they sent everybody who missed camp that year, a T shirt with 09 on the back, my goodness. But it's wild for me to think that she missed her very first year of camp because of it. And Benny is missing his very last year as a camper at this camp. At this age. He's 15. He's going to be a sophomore in high school. That's your last year as a camper, then you can continue on with a special program next summer. And then after that, a counselor and training etc. But she says he's going to do which I think is great. I know there's been a lot of disappointment and events canceled. And this is just one of many, many, many things, but especially with diabetes, right camp is such a big influence on so many people. And I'm thrilled that so many camps are going to try to do it virtually, of course, it's not the same when you're talking about connection. I think it's wonderful. So we'll talk about that in a minute.
I have to tell you about something that has been sitting on my desk. Actually, it's a wrapper that's been sitting on my desk to remind me to tell you about this because we hated it a long time ago. But I've been meaning to tell you and this is gonna sound like a commercial and I guess it sort of is, but they're not paying me. But I wanted to tell you about NRG foods, it's the letters N R G. And I'll put a link in the shownotes Chris Ruden, who has been on the show before, tremendous athlete, world record holder. He has a prosthetic arm, you know, I'm talking about and if you don't, I will also link up our past shows with Chris Ruden. He was on the Titan games last year. really remarkable guy. He sent me a bunch of samples of the NRG bytes. Really, they were for Benny, I think he sent us six of different flavors, and Benny only got two because my husband and I got to them first.
They're really good. They're a smaller portion size than usual. And of course, that's how they're designed. They didn't want them to be too caloric. They're a size that's designed for, you know, a post workout replenishment. I guess we'll do a post podcast recording replenishment because I didn't work out when I eat them. But I thought they were really good. We've tried a lot of high protein bars in the last couple of years, as Benny has really been experimenting with different things that he likes. He is trying to be much more conscious, not just of carbs. He doesn't eat low carb, but of calories because he has lost some weight and he's doing really well. So the energy bytes, he said, were really good. And his review was, he does think they're too small. This is a 15 year old, but he likes that it has the protein. And he also says he understands he thinks why it's small, because you don't get that protein aftertaste. He says a lot of high protein bars that we've tried just are full of protein and you get this weird, he didn't describe it as chalky, but I would like a weird protein taste. So these are really good.
They come in three flavors, peanut butter, cran-almond and chia chocolate and I'm not a big fan of chia. So I was very skeptical, but I didn't taste it. I just tasted the chocolate and I was impressed with that. I do have a promo code for you. I'll link up the website for energy dash foods dot com and if you use the promo code Simms, that’s S I M M S, you will save 20% I told Chris I was going to be talking about it on the show, he offered the promo code. So I just wanted to get it out there and tell you what we thought. It's always really nice when you can support a business that a fellow person in the diabetes community is involved with. So thanks, Chris for sending those all the best with it. And again, all the info in the show notes.
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My guest this week has been going to camp for as long as she can remember, Sam Stevens was diagnosed with type one at age five. She went to diabetes camp that summer and never looked back. This year, she's helping run something completely different, a virtual program for kids at Clara Barton camp and camp Jocelyn, both programs of the Barton center for diabetes education and independent nonprofit.
There are a lot of other camps with virtual programs this year, and a few that have gone ahead with their programs in person. Now, I asked about that in the Facebook group, which you should join if you're not already in it's Diabetes Connections the group. So you can find lots of information on camps there and just see what other people are doing around the country. Our diabetes camp program was cancelled this year. But Benny had decided not to go this year, which made me kind of sad he'd been going. He was seven years old. He was set for the regular camp I talked about earlier. And that was scotched as I mentioned that I am excited that the camps are going ahead to at least try to help connect campers with their community. So here's my talk with Sam Stevens.
Sam, welcome to the show. I know this is a very different kind of summer. So I appreciate you taking the time to kind of explain things. Thanks for being here. My pleasure. Thanks for having me. Before we jump into what what Barton and so many other diabetes camps are going to look like this summer. Let me just ask you a couple of quick questions about you and your experience because you have been going to diabetes camp, probably for as long as you can remember. Do you actually remember your first summer?
Sam Stevens 8:32
I do. I remember my first day. I remember where my bed was. I remember my trunk that I covered in stickers when I was six years old. And I remember it being the best experience of my life.
Stacey Simms 8:48
You were diagnosed right before you went to camp where you were just five years old when you were diagnosed, and then that was maybe the first summer that you were able to go.
Sam Stevens 8:54
That's exactly right.
Stacey Simms 8:56
Do you remember anything about your diagnosis at that tiny, tiny age? I mean, that's really young. To think back to but I'm curious.
Sam Stevens 9:03
Yeah, I actually, I remember being in the hospital, I remember that there was a fish tank in the hospital and the children that really liked going to. I remember being confused. And then I remember, you know, life obviously being different. But I think, I think in a way, I'm lucky that I got it earlier before I could really remember the stark difference between before having diabetes and after having diabetes. So for me, it's always just been normal life for me.
Stacey Simms 9:40
It does seem to me that going to diabetes camp can make it seem even more normal. I don't have diabetes, but just in my son's experience. It's so nice to be around other people going through the same thing, especially when you're a little kid. Did you know anybody at home who lived with type one, or was it just the summers for you?
Sam Stevens 9:57
It was just the summers. I didn't know Anyone and so exactly like you said, going to camp where everybody just gets it. Everybody just understands what you're going through when you say that you feel low or high you need to eat or can't eat is was so comforting to me and really taught me a lot I learned most of what I know about my diabetes management from camping even from my my friends and community in the years since camp
Stacey Simms 10:31
you I have to tell you I'm struggling a little bit with doing this interview this year because I'm such a big fan of camp and every year we talk about diabetes camp but I always in the back of my mind hope that a parent that has not yet sent their child will listen and feel really comforted and excited about camp and and really make the dive in and and as I'm talking to him thinking, but there is no camp this year. But there is kind of Camp let's let's talk let's try to look on the bright side of this because I know Gosh, so many camps. And people like yourself are working so hard to make sure there is a camp experience. Let's just start and dive right in. What is Barton doing this summer? Tell me about your virtual camp.
Sam Stevens 11:11
Great. So, Barton is running a virtual camp. What happened was a bunch of volunteers or alumni who you know all have been keeping intact, especially since the pandemic started, and a lot of people have sort of reconnected with friends. We all heard that camp was very, very sad, we canceled this year. And because it had such a profound impact on each of our lives, we got together and thought, hey, what can I do to help campers be able to experience that can't magic and not lose out on all of the value that they would without campus?
Stacey Simms 11:54
So this is pretty much a volunteer effort that that came about from from the alumni.
Sam Stevens 11:59
This is 100% volunteer effort sorted by alumni. And this also includes people who would have been counselors or admin staff to so multiple camp generations if you will.
Stacey Simms 12:15
I love it. That's fantastic. So you know, there's not going to be the campfires and the, you know, the bunks and all the stuff that happens in person. I assume it's more than a couple of zoom calls. Can you tell us a little bit about what you're planning?
Sam Stevens 12:29
Definitely. So we actually are going to have campfires and we are going to have cabins and of course they won't be in person. But what we've done is we've created a program where every day for a couple of hours a day, between two hours a day we have various different activities. those activities ranged from your typical, you know, arts and crafts or dance classes and stuff like that. To cabin time where we give you know every all campers have been assigned to cabins, and each of those cabins have dedicated counselor. So the counselors during their cabin times will facilitate definite games and icebreakers and pen pals and things of that nature. And then the third pillar is the all camp activity. So the campfires and the dance nights. And all of our amazing volunteers are recreating each of these programs virtually.
Stacey Simms 13:28
That's so great to hear. What's what is your hope for a new camper, right? Somebody who's seven years old and was just diagnosed or somebody who's 14 years old and doesn't know anybody, what would be your hope for a virtual program for somebody like that? Who doesn't know anybody.
Sam Stevens 13:44
So my hope for a camper who is brand new to camp is that they get that same feeling that I am not alone, that there are kids who look like me sound like me, act like me have my shared experiences Even if we don't, you know, get to meet in person, I still know that they exist, I still connect with them, I still make friends, and have that shared deep commonality of having that this profound thing in common. And I think it's a great way for people to improve their so especially if it's a younger kid or someone who just hasn't gone to camp before they can learn about it, they can experience it virtually. And then oh my gosh, this is how great it is to imagine how fun is this person and also get to experience it. And we're going to have sessions with health care providers, who will be there to answer questions and we do what's called scoop sessions, which it's an acronym for something and honestly, it's been around as a camper, and I have no idea what it stands for, but it's always
Stacey Simms 14:58
Sam Stevens 14:59
I think Maybe someone older and wiser than what it stands for. But that's rare. Health Educator will talk to campers either kind of in a question and answer thing. campers can kind of submit questions anonymously that they might not be comfortable talking about with, you know, a parent or a doctor that they need some more, you know, pure conversations about it can be a nutritionist to help teach carb counting, you know, things of that nature that I think especially for new campers, it just normalizes it, right? If if you just kind of are in your own isolated life, the only real touchpoint you have with your diabetes management is most likely at your doctor's office every couple of months, right? Sometimes people are lucky enough to know other people with type one or go to school with other people. But a lot of times kids are just isolated. So this is a real exposure to the fact that kids are not alone.
Stacey Simms 16:00
And I wonder too, sometimes there's a misperception that diabetes camp is all scoop sessions, right? It's just all diabetes education, you're gonna con gather round kids will sit in a circle and talk about how to change an inset. Yeah, where the opposite is really, really true. I would imagine that even in those sessions, it's more, you know, it's learning in a fun environment. But every diabetes camp is a little bit different. You know, so I assume that the learning experience at Barton is kind of just melded into the camp experience. Has that been your understanding and experience over your time there?
Sam Stevens 16:34
That's exactly right. We, it's it's integrated really organically on a daily basis in the sense that the cabin will do check their blood sugars together and give their insulin together which is constantly an education, educational opportunity for campers, especially those who are less familiar with pre qualifying or carb counting or Doing slight changes, etc. And again, that's just integrated throughout the day. So there's just a constant learning element, as well as the more times that are set aside for doing an education session. And while of course campers are, you know, often like, I don't want to go to school for this class, whatever the the team, you know, works really hard to make it fun. So we always play you know, games like diabetes trivia, or you know, card counting bingo and stuff like that, to really try to make it can't be. Yeah.
Stacey Simms 17:37
So let's talk about your camp experience because you were a very young camper. And you've obviously stayed you, you know, you were very young camper. Then I imagine you're a counselor, you're a volunteer, volunteer lead of this whole thing now. Um, why did you stick around for so long?
Sam Stevens 17:53
The people, it's honestly the people who I've met. They're their family. To me. We always camps family theory. These are people who have mad and grown up with that I literally trust with my life. We will just always be there for each other. And that's all because of camp. I would have never met these people, I would have never learned what everybody has been able to teach me if it weren't for camp.
Stacey Simms 18:22
And I know this year is unique. But is there anything that you'd like parents to know, whether their child is having a virtual session with diabetes camp? I mean, you know, generally, this is the part of the interview where we try to tell parents, it's gonna be okay, drop them off for the week, go on vacation. You know, obviously, none of that is happening. But I'm wondering if you do have a message for parents in this really unique year?
Sam Stevens 18:45
Yeah, I mean, yeah, my message is that first of all, we are just as sad.
Your campers, especially the counselors who were supposed to be staff this summer. I would have been absolutely devastated. I was planning on being a counselor, which was honestly even more fun than being a camper. And I learned that it was canceled. So everybody, you know, everybody's heart is hurting just the same thing, entirely a labor of love. People who I think, you know, similarly to me share the same experience from camp and really care so deeply and truly about it that we want to take the time to give that back and make sure that kids can experience it this summer. This is our first time doing this. I think it's kind of everybody's first time doing this. So it won't be perfect. We will, you know, kind of struggle through things at the beginning. I'm sure. We're all gonna be learning as we go. So, you know, I I asked that to be patient. As you know, this is a process that we're all learning together. But I think that at the end of the day, there will only be a positive experience for kids.
Stacey Simms 20:00
One of the things that my son really learned or at least came home, feeling like he was more confident about at diabetes camp was just meal times. You know, he was young when he started to go. Our sleepaway camp here starts at age seven, I think at the youngest. And he came home much more interested in what are the carbs on my plate, and I'm going to add them up myself and that sort of thing. And I'm sure that virtually things like that are challenged, but are you are you going to be addressing kind of what they're eating? I picture the kids like showing stuff on the screen about
Sam Stevens 20:32
Stacey Simms 21:08
stump the counselors like what do you think this carb count is good? like peanut butter
Unknown Speaker 21:15
Good luck. Exactly.
Stacey Simms 21:19
That's really funny. Those are the experiences that only people with diabetes understand. Right? Those are the things you can kind of only do it diabetes camp. Um, can you tell us a little bit about some of the activities that you have planned? I mean, I'm just because I think it's hard for sometimes people to kind of understand what you see virtually, like, what can What can we do? So can you tell me a little bit about a couple of activities?
Sam Stevens 21:42
Yeah, definitely. So, so to start, each camper is being sent a camp supply pack, which has a couple of different activities that will set them up to be able to participate. So one example is In the arts and crafts, we're going to be building pipe cleaner ninjas. As well as doing the hand model with the, you know, just paper and colored pencils and straws and beads and pipe cleaners that are all being sent to campers right now. We're doing a game one of my favorite games, that's called Dutch auction.
Unknown Speaker 22:27
Sam Stevens 22:30
this whole thing I would actually say kind of originated from Dutch auction, too. Best camp friends put together a group of alumni over Facebook, and said, Hey, does anybody want to play virtual Dutch auction next week? And there was about 20 of us who said, Yeah, let's play. And if you don't know what Dutch auction is, there's a couple ways that you can play it, but the way that we played it is that each round one person would be the judge, and the judge would come up with some sort of object. So it could be a pirate ship, or
something that floats are as kind of esoteric creative, things like that. And everybody gets three minutes to run around their house and create that object. And then everything comes back to the computer and presents what they made. And the judge awards, the you know, the best interpretation of that object, and then that person becomes the the judge. Nice, we had such a blast playing it. And that group of alumni you know, continue to stay connected over Facebook and it was that group that When we all heard thought camp was canceled this year, we got together and said, hey, what can I do? So we definitely wanted to make sure to include Dutch auction and virtual camp because who knows what, you know what genius will will come out of it.
Stacey Simms 24:18
But that's great, because it kind of all started from that idea. Right. You had you had an actual game, and then you wanted to get together and play it online. And then it came from there. I think that's fantastic.
Sam Stevens 24:29
Yeah. And I want to give a shout out to Melissa Moulton and Julia Roboto. Who are the the mothers of this, of this game and this group.
Stacey Simms 24:42
That is great. You know, hopefully, I think we're all keeping our fingers crossed that next year, things will go back to some kind of normal and we'll have you know, regular camps and kids programming and we can just focus on regular old diabetes stuff. I we don't know each other very well, Sam. But I assume that you are a confident and competent adult. You know, who is managing your own type 1 diabetes without your parents calling you every day to say did you bolus I mean, they might check on you, but they're probably not on you as much as they were when you were 567 years old, as much as
Sam Stevens 25:17
their wishes that he could call me every day.
We have we have cut that cord correct.
Stacey Simms 25:25
Listen, as a mom of a kid with type one, I sympathize. I get it. But not to put too fine a point on it or lead you. But it just does seem to me that diabetes camp does help so much in terms of that confidence and independence. Can you just speak a little bit to that before I let you go?
Sam Stevens 25:42
It absolutely does. As I've, as I've touched on. I think there's the two most important parts that have diabetes camp that really help kids with type one develop their their competence is number one. Just the the education part but also the policy of the education part. So just being you know, integrating and making diabetes management such a normal part of day to day and seeing your peers do it with you, they'll get a lot of confidence. And especially working with, with nurses and doctors and nutritionists, and having, being able for kids of all ages to have learning conversations about, Hey, I think I think I need 15 grams of carbs are going low in the afternoon, you know, let's let's work as a team to, you know, change my diesels, those kind of conversations are really great skill building experiences for kids that definitely build a lot of confidence with their diabetes management. And the second part is really the emotional support really giving people The confidence that just because you have diabetes, you are not broken, and you are not alone. There are hundreds of kids like you who all have fun. And all can be, you know, can giggle just as much as a kid without type one diabetes or go to, you know, go to dances and play sports, do arts and crafts, and do you know, all these other things that kids without diabetes do that throughout You know, every other every other month throughout the year, it's really easy to forget. And it's really easy to feel so different and so other eyes. So having that community of peers builds so much confidence on that emotional level.
Stacey Simms 27:44
That's great. And then on the our parting note here, there are a lot of great diabetes camps out there. I will say that my son's is the best. I love the people. It's the best in the entire country. Tell me why Barton is the best
Sam Stevens 27:57
to you. The people People that again I am, I'm a five year old camper who is now a 30 year old volunteer on campus and with me every single year of my life, it has that much of an impact. My, my, my friends have have grown up with me. Throughout all of those years, I'm sure that each diabetes can provide a lot of those really strong friendships, but I just can't imagine any place more special any people more special than Barton.
Stacey Simms 28:38
Well, that's fantastic. I'm so glad you came on. Good luck with the virtual camp. I'm thrilled that you did it. I know. It's gonna mean a lot to the families. So thank you so much, Sam, for coming on.
Sam Stevens 28:48
Thank you so much for having me and I will keep you posted with how everything goes.
Unknown Speaker 28:58
You're listening to Diabetes Connections. With Stacey Simms.
Stacey Simms 29:03
More information about the Barton program, there are different tracks or at least different sessions I should say. So you may still be able to sign up, I will put the information out there. And again, for other camps, please head over to the Facebook group. And you can check out the listing that is community sourced. So if you have some information you can add to that. I really hope these camps go well. I'd love to hear more if your child has participated in one if you're a staffer at one, and let us know you know how they go, is it something you'd continue even after in person stuff can happen again, I think there's going to be some cool programming coming out of this.
Tell me something good in just a moment. But first diabetes Connections is brought to you by Dexcom. And when you have a toddler diagnosed with type one, you hear rumblings for a long time about the teen years, but when it hit us at full force a little early. I'm so glad we had Dexcom Benny's insulin needs started going way up around age 11. As I said, He is 15 years old, he is 5’11 at least and that means he's grown like eight inches since he was 11. I mean with all the hormone swings, I can't imagine managing diabetes during this crazy time without the Dexcom continuous glucose monitoring system. We can react more quickly to highs and lows, see trends and adjust insulin doses with advice from our endocrinologist. I know using the Dexcom g six has helped improve Benny's agency and overall health. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, just go to Diabetes Connections comm and click on the Dexcom logo.
Alright, tell me something good this week. Christina Frank is a news anchor up in Maine. She does the morning news. Boy I did this for a long time. I don't know how early they get up for television. When I did radio I was out of my house by 330. I had to be there at four to go on at five. So I'm guessing if their show starts at five, they've got to be there earlier because they don't have to just go over everything they're writing and reading but they got all the hair and makeup Well, I gladly gave up. I did do mornings in Syracuse so long time ago. But Okay, back to Christina. So she is in our telling me something good segment because Christina Frank won an Emmy! Her team won an Emmy for best morning newscast in New England. So congratulations to you, Christina. That is just tremendous. Of course, Christina lives with type one. She has a little girl we talked about her baby on the show. She's been on the show. She's just wonderful. So I'm thrilled to just offer my congratulations to what I know is a really, really wonderful accomplishment.
Another Tell me something good comes from health line. Now health line is a fabulous news source. I think diabetes, mine is under the Healthline umbrella, but they're an online magazine, whatever you call it, a news source very carefully vetted health information. And this story just was amazing. So this is a woman from Salt Lake City, Utah, who has type one diabetes, multiple sclerosis asthma and is obese and she just survived. COVID-19 like in the house. hospital ICU saying goodbye to her family and made it through. And more McCarthy, who's a good friend of mine, as you know, did an amazing write up for health line. But this is about Kimberly Ishoy. And Kimberly, as I said, has all of those underlying medical conditions. So how do they think she made it through what happened here? Kimberly says, it was a combination of advocating for herself, but also being willing to do whatever the doctors asked her to do. And she and the doctors agree that her very active lifestyle made the difference. She's a distance cycler and she does triathlons. And yeah, she has all of those conditions that I mentioned, including being obese.
So how does she do all of that? Well, I think it's all of this misconception that if you're heavy, you can't also be healthy or you can't exercise but Kimberly has been doing the JDRF ride to cure diabetes since 2013. And once she knew she could do that, she says she moved on to five K's and triathlons. It says in the article she usually finishes last. But she finishes. And this is a wonderful quote from Kimberly. I personally think we are all created differently like flowers. She says, I will never be a violet or baby's breath. I am a sunflower a substantial woman. But I also know fat women can ride their bikes 100 miles. So that's something. It's a great article, I will link it up. I thought it was incredibly inspiring. It goes through in detail what happens when you're in the ICU with COVID it's a really terrific write up that way. And I'm thrilled of course that Kimberly is doing well and on the road to recovery.
Do you have a Tell me something good story, it can be as simple as a diverse serie something fun with your kids. And this time that we're going through, I think we need all the good news we can get. So let me know and just email me Stacey at Diabetes Connections calm or you can post in the Facebook group but tell me something good.
Usually at this time of year, I am getting ready to go to friends for Life, the big conference that happens every year, mid July down in Orlando, sometimes right after the Fourth of July, this year, it is a virtual conference. And we are prepping for that getting ready. Lots of fun things that are going to be online for you to participate in to watch and enjoy from the comfort of your home. I mean, the good news here is that nobody has to travel to Orlando where it's 500 degrees in July. But of course, we're really missing seeing everybody and I think it's going to be pretty bittersweet to do this conference where you know, two to 3000 people get together every summer, but they've done an incredible job of moving it online. I'm really proud and happy to be a supporter. So you will be hearing more on that.
Please follow along on social media. I am on Facebook and Twitter and Instagram and on Instagram. It's just Stacey Simms. other platforms have to but I on Instagram, I was late to the party and I don't think there's any reason to have to, and I'm not on tik tok, and I'm not on snapfish So, you know, famous last words maybe by the end of this, stay at home will be on every platform you can find Imagine. Thank you to my editor john Buchanan's from audio editing solutions. thank you as always for listening. I'm Stacey Simms. I'll see you back here next week until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
Tandem presented new studies at the recent ADA conference and got approval for some of the youngest people with diabetes to use their newest tech. Steph Habif is Tandem’s Senior Director of Behavioral Sciences. She shares what those studies found, gives us more information about Control IQ and touches on what products are up next for the company.
In Tell Me Something Good, great news about college scholarships for students with type 1.
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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Stacey Simms 0:00
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This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:22
This week, Tandem presented new studies at the recent ADA conference and got approval for some of the youngest people with diabetes to use their newest technology. But Tandem is also keeping a close eye on including many more people in future studies.
Steph Habif 0:37
It's a shared responsibility across many communities to figure out how to make it easier for different types of people to be included in this research.
Stacey Simms 0:48
That's Steph Habif, Tandem’s Senior Director of Behavioral Sciences. We'll talk more about what communities she means there and why Tandem wants to reach out more. And of course, we talked about Control IQ And what's next for Tandem? In Tell me something good great news about college scholarships for students with type one.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of Diabetes Connections. I am so glad to have you along. I am your host Stacey Simms. We aim to educate and inspire about diabetes by sharing stories of connection. This time of year we are sharing a lot of stories about technology and studies and that is because the American Diabetes Association Scientific Sessions conference has recently concluded so every year at this time, there's new information.
Sometimes it is also timed with FDA approvals like we saw last week with the Libre 2 and with Tandems approval that we're going to talk about for the Control IQ software to be used down to age six. It means a lot of information. It means some bonus episodes, it means some playing with the schedule. Because just trying to get this information out in podcast form can be a little bit more difficult. But you know, that's what I am here for what I love to do
If you're new, my son was diagnosed with Type One Diabetes right before he turned to my husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting and local radio and television news. And that's how you get this podcast. And just a quick note about my son Benny, I realized the other day, so we're 13 and a half years in with type one, which means we're coming up July 4 which his 13 year anniversary of wearing an insulin pump, which I cannot believe and I remember it like it was yesterday. So I'm going to maybe do an episode or talk about that in another episode, looking back on what's changed and you know how to pick an insulin pump and all that kind of stuff, but oh my gosh, oh, I can't believe he's 15.
Speaking of Benny, the world's worst diabetes mom is now available in more places. My publisher reached out to me. We are now sold online at Target and Barnes and Noble and pretty much expanding to every place You can buy a book online, I didn't realize this was a thing that we started on Amazon and now we are elsewhere, which shows that it's a good thing that I have these people to help me out. But it's also available in library form. And I'm still investigating this. So as you listen, if you get ebooks, that's the library form, it would have to be an E book, you know, Kindle or something like that. If you have a service that gets you library books, check it out, let me know where it is. Because I haven't been able to exactly track that down with COVID. I think there's some issues. I'm trying to get the hardcopy into libraries too. So that's something that you could really help me out with.
And I have to give a big shout out to Molly Cooper. Molly lives in the UK. She sent me a message that she really enjoyed the book. It was so nice of her to reach out like that. So of course, I asked her a little bit about it. You know, I have some UK readers, but I'm interested in the process. There's a different Amazon site for different countries. So I was just interested in how it all worked. And then she posted in one of the diabetes parenting Facebook groups that she belonged in, and oh my god. Molly, thank you so much. A bunch of people talked about the book. And it was such a nice thing for you to do.
So if you've read and enjoyed the world's worst diabetes Mom, I always ask please leave a review on Amazon that helps us so much when people are looking to see if they want to buy the book or get the book. But if you could also post in your Facebook group or on your timeline about it and tag me, but it would be so helpful to spread the word because let's face it, this isn't gonna show up in the New York Times Review of Books, right we have the community to spread the word and it may be immodest to say but I do think it's a book that can help people it's not just our story. There's a lot of advice in there and a lot of learning that I did over the years, I believe very much in it and I really appreciate those of you who are already spreading the word if you're ready and you don't like it forget you know me!
In just a moment I'm going to be talking to Tandem’s, Steph Habif about Control IQ, new studies and lots more. But first diabetes Connections is brought to you by a One Drop and getting diabetes supplies. It's a pain let's face it. Not only the ordering the people up the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They have our personalized tester 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 no co pays required. One less thing to worry about. not that surprising when you learn the founder of One Drop lips with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more go to Diabetes connections.com and click on the One Drop logo.
My guest this week is Steph Habif. She is the Senior Director of Behavioral Sciences at Tandem which means she really advocates for the people who use the technology. She presented some of the studies we're gonna be talking about at ADA and of course has presented elsewhere and a quick note if you are new to the show, we use The Tandem system. They're not a sponsor of the show, but I know I am biased toward Tandem. So I want to make that disclosure. First thing I just love the way it works. Look, it's not perfect nothing is but we have been using Tandem for three years now. We switched from Animas insulin pump in August of 2017, just as the Dexcom G 5 update was approved for for Tandem. So basically we got a pump and then we immediately updated the software. We have done two other updates the basal IQ last year and we went to Control IQ in late January pretty much just as it hit the market. I can't believe it has been six months already. So well. I don't think that influenced the actual questions I'm asking. It certainly influences how I feel about the system. So here is my interview with Tandems, Steph Habif.
Steph, thank you for joining me. I'm so excited to talk about Tandem and learn more. Thanks for being here.
Steph Habif 6:55
Thanks for having me. I've been a listener of yours for a while so it's a real pleasure. Thank you very much
Stacey Simms 7:02
this year's ADA very different may start by just asking you what that was like for you to to present and have to do everything virtually.
Steph Habif 7:08
Yeah, it was definitely, I think unique and interesting experience for a lot of us especially people who regularly attend the ADA each year. And I'm not gonna lie. My favorite part about the event is getting to see people and kind of have very energized Creative Conversations together in person, I think a lot of brainstorming and some of the best ideas, birth from, you know, getting together with kids from all over the world at meetings like that. So that part was kind of missing, obviously this year. But given what's happening in the world, I think it was put on fabulously well produced really, really nicely. The excitement leading up to the conference was there that was a part of my experience this year for sure, like every year, and then it all happens through email and chat and tech So my eyes hurt. At the end of the conference, I think my eyesight has taken a little bit of a hit in the past couple months, like a lot of other people. But there was some very exciting information that got presented.
Stacey Simms 8:12
Yeah, let's talk about some of that. We've talked about Control IQ in depth before its launch or right as it was launched. Tell us about some of the presentations here. I know one of them was Control IQ in the real world, the first 30 days. Tell me about that.
Steph Habif 8:29
Yeah, so that was a proud moment for me and my team, the scientific posters that we presented at this year's ADA. I think one of the people you have had on your podcast to talk about Control IQ is Molly Malloy and she's on my team here at Tandem, we get to work together. She was one of the researchers whose name was on these presentations at ADA and the first 30 days. That was really our first look under the hood, so to speak. So one of the things that my team here at Tandem is responsible for is post market surveillance and user experience research. Meaning once the FDA approves or clears a medical device, like the T slim X2 and people start using it in their everyday lives, the job of my team is to observe, measure, learn, how's that going for people? whether it has to do with their glycemic outcomes, like time and range, or quality of life, things like how's your sleep? Those are all the things that we're responsible for researching and studying. Now, what we did for a DEA was we didn't have very much time with Control IQ in the market before the ADA deadline presented itself.
So Control IQ came to the US market starting mid January, and we had to have all of our materials submitted to ADA by the second week of March, so not a lot of time. So like I said, sort of first look Under the hood, meaning we went into our databases into our T Connect web application, back end systems, and we use some research methodologies to kind of see how it was going for people. What sort of glycemic trends and outcomes were we seeing for the early adopters right out of the gate, and we specifically focused on folks who software updated. So I think Benny's a software updater - he was on Basal IQ leading up to Control IQ. And how old is Benny? Again? He's 15. So he was probably included in our analysis. Absolutely. So sorry, no. Yeah, so anybody who was age 14 or older and had at least 21 days of use on control, IQ technology, leading up to march 11, was included in this analysis. So
Stacey Simms 10:52
he was he was definitely in there. And you would have seen a great response. I don't mind telling you.
Steph Habif 10:56
Yeah, so this information that we presented at ADA Like I said, we didn't have that much time. So really data mining to look at glycemic outcomes. So it was a retrospective data analysis exercise, essentially, which is a very common thing to do when it's your first look at sort of what's happening in the real world. And we were really pleased to discover that overall real world users are experiencing an increase in time and range of 10%. Before updating to Control IQ. The folks in this study had a time in range of about 68%. And throughout their first 30 days on controlling IQ, they experienced an increase to get that overall time and range metric to 78%. And what's exciting about that is that 10% jump matches what we saw in our control, IQ clinical trial.
Stacey Simms 11:53
Did you have any data about ease of use? In other words, do people continuously use it? Did people have sensor issues? If you have have problems figuring out how to adjust anything I know it's it's tough to glean in such a short time. I'm just curious if you learned anything else.
Steph Habif 12:06
So for the purpose of what we presented at ADA, we kind of kept it really simple. Again, because we didn't have very much time we mined data we we worked with what was available to us. And so we really focused on things like changes in time and range hyperglycemia hypoglycemia, and we didn't for the purposes of what was presented at ADA, talk about quality of life, things like sleep improvement, but what we do know is that for the folks who were included in this analysis, overall, they experienced the percent of time in closed loop automation was 96%. And that's really exciting. Now for the Control IQ technology system. The only reason a user isn't in automation is if they lose connection with their CGM for 20 or more minutes, that's it. And then once CGM is reconnected automatically, you're back in that automation close loop. So that's really elegant and simple. And that came through in these metrics that we presented at ADA.
Stacey Simms 13:17
Yeah. So that's interesting. I mean, not to jump to a conclusion. But let me just make sure I'm hearing you right. So we can pretty much conclude if 96% of people using Control IQ, excuse me, if people using Control IQ stayed using it 96% of the time in automation. That means that their sensors were working that things were chugging along just as they should.
Steph Habif 13:35
Yes. And thank you for bringing that up. So we have some consensus guidelines on data integrity for this type of research. When you're doing real world research like this, the guideline is for the purposes of data integrity, to include CGM rates that are 70 to 75% or above. So what that means is in our analyses for the ADA we included people who had at least 75% CGM connectivity over that 60 day period. Now in the clinical trial for Control IQ, the investigators reported CGM connectivity in the high 90s. That was a way that we could sort of control for that variable given that we were doing a retrospective data analysis, if that makes sense.
Stacey Simms 14:27
Yeah, it does. Because it's really important. And you know, this people in the diabetes community, there's separate issues here, right? There's Control IQ. There's the Tandem pump, but there's the Dexcom sensors, which Listen, it's not a Dexcom interview here. But we've talked a lot on this podcast about people who just have trouble with the sensors, and sensor failures and things. So I'm glad to hear you clarify because I'll be honest, that 96% number didn't really sound real world to me, but it makes a lot more sense when you understand that it's already looking at people who have good sensor luck. I don't know what to call it. Good sensor usage or It lasts.
Unknown Speaker 15:01
Stacey Simms 15:03
Yes, connectivity, that’s what I was looking for. Yeah, that makes a lot more sense. There was another study, if I'm reading this correctly about people with type one and type two, use the Control IQ. I didn't know anybody was type two was was really using it. Can you speak to that?
Steph Habif 15:16
Yeah, that's pretty cool. So it turns out we have a fairly present segment of our customer base that have insulin dependent type two diabetes. And so again, first look under the hood, we sort of sat there and we were curious, and we said, well, we have some people who are updating software updating to Control IQ who report that they have type two diabetes, I wonder if they're experiencing things differently than folks with Type One Diabetes. And it turns out that both people with type one and type two diabetes are experiencing significant improvements in time and range with use of Control IQ. So the second publication that we presented at ADA was looking at glycine outcomes type one versus type two. Now you've heard me say that folks with type one in our analyses experienced a nine or 10% increase in time and range as a result of their software update. And for folks with type two, that was a 6% increase in time and range. But here's the really cool part, the analysis that we did for looking at the difference between type one and type two, we required a minimum of 14 days of use leading up to the software update, and then 14 days of use after the software update, which is half the amount of time from our first analyses. And so what that means is by seeing that our folks with type one got to a 9% improvement in time arrange, it means that those improvements are happening really quickly, right after the software update.
Stacey Simms 16:46
That's really interesting. I want a little dig a little deeper into some of these studies. But I also want to kind of do some bullet points here. So let's talk about Control IQ okayed for young children, because I just happened. Yeah, can you speak to what those studies found? Was there anything different or anything parents of children down to the age of six now should be thinking about anything different?
Steph Habif 17:06
I don't really think so. We recently, just a couple days ago, got our FDA clearance for the pediatric indication for Control IQ for children's six year old Jr. Before then it was previously approved for ages 14 and older. We know investigators have been doing research and even younger populations. But right now we're only approved down to age six. And what the clinical trial that focused on ages six to 13 using Control IQ saw was the sensor timing range increase to 67% from 53%. compared to those in the control group, and overnight children using Control IQ technology in the same study state and range an average of 80% of the time, those glycaemic outcomes match what we're seeing in the real world with a slightly older group, and so it's looking very consistent. So far across the board,
Stacey Simms 18:02
one of the things I wanted to ask you about these studies and in Tandem isn't the only one who does this. It looks to me like a lot of the automated studies that I'm reading from Insulet, Medtronic and some of the other companies, was that 68% in range number that you mentioned, like the people who started when from 68 to 78, which is fantastic. But we know that so many people with diabetes have like 30%, time in range, right? They need this technology so badly. And I'm wondering, can you just speak to that in terms of I don't know why the studies, and I was glad to hear the kids study was 53% to 67%. That seems a little bit more realistic to me. I mean, God forbid you study teens. What, you know why? Why do you? Why do most of these studies take people who frankly, have relatively decent control, right, we're talking about the whole sphere of diabetes, that just people who have great technology, I would think you'd want somebody who's got an A1C of 10 and you can say, look, we knocked them down to six.
Steph Habif 18:55
That is a great question and you are speaking my language. I'm so thrilled To hear you ask that question. That was actually one of the biggest themes to emerge from this year's ADA. And it certainly isn't a new theme, but it was a very prominent theme this year. The call for more diversity in research studies diversity, whether it has to do with baseline A1C or baseline time and range where somebody lives. There was a really exciting study presented at the ADA by researchers in New York who looked at inner city urban teenagers onboarding to the T slim x two with Basal IQ. And that was very cool to see. And so you're absolutely right. It is on us as researchers, as scientists, as clinicians to figure out how to be more inclusive in this type of research. And that's certainly one of our goals here at Tandem.
Stacey Simms 19:49
It's interesting because I thought you were going to say, I don't know I thought it was going to be more on the medical side of it. So in other words, is it more of a question and I'm pardon my ignorance here because I wasn't really even sure what I was. Asking there. Is it just harder to find people to be in these studies? Or is it the study criteria that excludes people?
Steph Habif 20:07
So at Tandem, we try to have the most inclusive criteria that we possibly can for this year's ADA, again, because we had such a short amount of time, and we really only could take quote, unquote, the first look under the hood, we had to work with the data that was available. When you consider early adopters of any technology really, but certainly early adopters of Control IQ technology, like you said, a lot of those folks were already doing pretty well, especially because most of them were on T slim x two with basal IQ leading up to their Control IQ technology update. It's a loaded question, you know, why isn't there more diversity in this type of research? And there's no one simple answer to that question. I think it's a shared responsibility across many communities to figure out how to make it easier for them. Different types of people to be included in this research. So I think the medical community, the research community, the scientific community and the diabetes community sort of at large, we just need to be better about being more inclusive.
Stacey Simms 21:13
Well, and I think it's very easy. Once you set the parameter that you looked at people who are early adopters, we know who those early adopters were there us, there are people who listen to podcasts, there are people who are super educated, they went for the portal before the email came to them. So it's a it's a very self selected group of highly educated people. So I'm not being critical. I get it. It's just Gosh, like I said, I'd love to see what happens when you start people who have a very high A1C and don't have a lot of time and don't have a lot of perhaps access to get a technology like this and see what it can do. Because, you know, I'm such a cheerleader. Listen, my bias is showing, but my son has always been in very good health with diabetes. We've been very lucky. You probably know we don't share numbers, but we're on track to have probably his lowest A1C ever and he has never done less work. It's amazing. So I just hope everybody gets a technology like this.
Steph Habif 22:05
Yeah, you know, the psychologist and behavioral scientist in me is just thrilled to hear you say that. I mean, for somebody like me who has studied social science her entire career and has also worked in health technology and medical technology, my entire career, I like to say that my purpose professionally is to advocate for the humans using the machines. And so I want the science to be able to tell the most insightful stories, whether powerful stories like one you're experiencing with Benny, where he's having to do less and less work but experience better and better outcomes, or whether it has to do with, you know, somehow shining a light on underserved populations who could be the greatest beneficiaries of this type of technology, and how can we make that happen? So all of that, to me is very exciting.
Stacey Simms 22:56
It's gonna be fascinating for somebody with your background to work in this field, where the mental side of diabetes is just as important. The Human Factors on pumps. It's, we could talk all day.
Steph Habif 23:05
Absolutely, yeah. So the easiest way to think about it for in terms of what I do and my team's do here at Tandem is, as you know, the FDA requires very rigorous Human Factors testing in order to submit and receive clearance on a medical device. And so my teams do all of the usability and Human Factors testing prior to our FDA submissions. And then other parts of my teams are the psychologists and the social scientists responsible for doing all the work to understand how the machines are functioning and the everyday lives of everyday users. I feel very blessed to be able to do that for work.
Stacey Simms 23:39
So moving to, you know, heaven forbid, we left to let you rest on your laurels at all moving ahead to what may be next. We know that COVID-19 has delayed a lot of things, you know, in all medical fields, but can we ask about the T sport and the Tandem mobile app? Can you talk about where those are right now?
Steph Habif 23:57
Of course you can ask. So a lot of you know We have a new insulin pump system that we're working to bring to market next year, we typically refer to it as the T sport. That's our internal project name for it. That's what we've kind of affectionately been calling it while it's been in development. It's about half the size of the T slim x two. It's being designed to be controlled either entirely by a mobile app or by an independent controller. And you're right due to the current COVID-19 environment. We have had some delays in some of our human factors testing. Because the data is required for our regulatory filings. The target submission timing for the tee sport will be pushed out until protective government restrictions are lifted. And because I am the person that oversees our human factors team, let me just say that trying to plan and carry out to actors testing during a pandemic is one of the most unique challenges of my career. And I know for anybody out there who's attempted to plan anything right now it's been particularly difficult.
Unknown Speaker 25:04
Before we go on, do you believe the Tsport will have a different name when it launches?
Unknown Speaker 25:08
Stacey Simms 25:10
I won't hold you to it. It's just the first time I've heard somebody say that. Like with Omnipod, you know, they said, Oh is Omnipod horizon? And they said, No, it's Omnipod five. Yeah. Sometimes we sometimes we find ourselves getting ahead, right. We're ahead of marketing. We're ahead of labeling we we follow these projects. So early that we kind of assigned we as a community assign names to things that don't even have a name yet, right?
Yeah, I am not a betting woman. And so I would be afraid to put money down on what t sport is officially going to be called when it gets commercialized.
Alright, fair enough. Fair enough. We'll just know that that's the working title. And then the mobile app. I know there's some people beta testing the phone app, which is more of a observant app, you look at things you can't do anything really yet. Is that the same timeline as the tee sport, whatever that timeline turns out to be?
Steph Habif 25:58
No, the mobile app is happening on In a different timeline. So we're developing a mobile app platform that is the foundation of our digital health strategy. The first generation of the app had a beta launch in the first quarter of 2020. And it will be rolled out more broadly in the upcoming weeks. So the first generation of the app will include remote data uploads so that patients can send their hcps important pump data without an office visit. We know that right now we've kind of been forced into this telehealth world. So that's going to be a really critical part of the user experience. And future iterations of the app will include remote bolus capability due to COVID. For sure. We've had some delays in human factors testing on the remote bolus features. And again, because data is required for our regulatory filings, we have to work with that the best we possibly can.
Stacey Simms 26:48
I'm so excited about that. I mean, obviously, the idea of bolusing from the phone seemed like the holy grail for a long time, but that is exactly what you're saying. right that the idea here is that you would take out your phone, bolus using pump, you'd be able to control it from your phone.
That's right. I give you the impression. I want to talk to you much more about that.
Steph Habif 27:09
You know, it's, I will say, being a scientist who's in charge of doing all of the research makes me an interesting candidate for a podcast interview.
Stacey Simms 27:20
All right. Well, I have so here's a question for you. And again, no answers a fair answer. I'm curious. When you you start doing things like that. The remote monitoring capability of the Dexcom , obviously, has been very, very popular. I'm curious if I wouldn't expect to bolus my son from my phone. Right? You wouldn't expect a caregiver to be able to do something like that. But what a caregiver be able to see more about the pump? Will there be more information available to people who want to, let's say follow, I don't know what kind of language we'll be using, like the pump battery, the insulin onboard, all of that kind of stuff. Will that be
Steph Habif 27:54
available? Yeah. So that's a great question. So follow capabilities through a mobile app. is certainly a part of our product roadmap, there are plans underway for that. I can't speak to when that would come to the market specifically, but it is being worked on.
Stacey Simms 28:11
Okay. And one more thing if you can't answer this is fine too. Would it be possible I'm just thinking out loud when my son was was younger and we did do everything for him? If like I could use you could designate like, this is the bolus phone, and it wouldn't necessarily be the phone that's with the kid.
Steph Habif 28:25
Great question. You know, cybersecurity is such a critical consideration in this land of remote anything. I can't tell you one way or the other, whether or not you as the parent would be able to use your smartphone to bolus you know from your son's pump. We'll have to wait and see what the FDA decides in the land of you know, security and safety and cybersecurity. For sure. Right now we're focusing on doing the necessary Human Factors testing for enabling the pump wearer to be able to use his or her smartphone
Stacey Simms 29:00
I'm trying to keep track of the timeline here. So forgive me for clinical trials underway for the T sport yet,
Steph Habif 29:06
right. So for the T sport project, we are not yet doing active clinical trials. But as many of you know, being a medical device company, we have a robust r&d department, and our engineers are experimenting on a regular basis.
Stacey Simms 29:22
Ooh, sounds intriguing. You should do all of your studies in Charlotte, North Carolina, you should include 15 year old boys. Yeah, let's move on. Do you know this isn't really your department, a bunch of my listeners had questions about insurance. And a lot of insurers were making noise a few years ago about only going with one pump company. And of course, the big one was United Health and Medtronic does tend to make any progress in that, you know, that deal. Right? So like
Steph Habif 29:53
what you said is true. It's not my department. So we don't provide individual payer updates, but we We believe having continued positive data on our technology, like what we presented at the ADA helps with all of our payer discussions.
Stacey Simms 30:08
So I would say to paraphrase that Tandem is not going to give up on working with as many insurance companies as possible.
Steph Habif 30:14
That is correct. We believe in doing whatever we can to create access for as many people in the world as possible.
Stacey Simms 30:21
another bit of news that came out right around ADA was FDA approval of Libre 2 and you all have had an agreement already with Abbott. I don't I don't know the parameters of the agreement. I don't think there's a lot of public the timeline or how it will work. Can you speak to anything about that about how sometime in the future I suppose the Libre will work with a Tandem pump?
Steph Habif 30:42
Yes, so Abbott and Tandem share a common goal to provide people with new ways to manage their diabetes that can integrate easily into their daily lives. The interoperability landscape is is very promising in Tandem is working with Abbott on an agreement to integrate a future generation of their glucose sensing technology with our insulin pumps. We haven't announced a timeline for the completion of the agreement, but we're working on it.
Stacey Simms 31:08
so dumb question because I always get confused with interoperability. Would this be a situation where I flip a switch on my pump and one week, I could use a Dexcom sensor and the next week, I could use a Libra sensor.
Steph Habif 31:17
I think for some people, that is what the vision is, like, I think we're all playing an active role right now in forming what this interoperable landscape could be. But conceptually, the idea is you could mix and match your technologies and they would be able to speak to one another. Now, that requires business agreements between the companies as well. So don't forget that part because that's an important part.
Stacey Simms 31:42
Yeah, yeah. Yeah, let's keep dreaming. Let's forget. So what are you studying? Now? Obviously, this isn't the end of the studies on Control IQ or Tandem products. Can you give us a glimpse into what what you're looking at in the next couple of months?
Steph Habif 31:55
Yeah, sure. Well, as you know, we currently offer the TCM x two with basal IQ technology and Control IQ technology. We had some pretty exciting research debut at the ADA on basal IQ in that we followed folks who on boarded to basal IQ during their first six months on basal IQ. And that was what we call a prospective study, meaning we were able to follow people in real time over the course of several months to see how it was going for them. The research we presented at ADA related to that specifically focused on self reported severe hypoglycemia episodes, and we were thrilled to tell the world that basal IQ is doing a phenomenal job of decreasing adverse events related to severe hypoglycemia. So basically, like he's seemingly doing a very good job at keeping users safe. And you know, safety is always at the top of our priority list.
So as we continue to see more people take on Control IQ technology if they choose to do that. We will Do these long term studies where we follow people if they opt in and want us to, we'll follow them while they onboard to and get to know and continue to use Control IQ technology so that we can learn from them. Again, not just the glycemic outcomes, things like time and range and hypoglycemia, but sleep quality, or other things like is it a hassle to use? Is it making your life better? One of the things that I'll never forget is a couple months after phase like q hit the market, I had the chance to briefly talk with a father who had a 16 year old daughter, and she had been on basal IQ for about six weeks. And he looked at me and he said, this is the most under promised, over delivered diabetes technology Our family has ever experienced. And I said wow, tell me more about that. And he said, We're finally sleeping. You know, we can sleep through the night. And you know, sleep is a precursor to everything for everybody. So we're going to be doing a lot more research on the sleep front to see how we can be better continue to improve sleep quality for people with diabetes. That's a very big topic of interest for us.
Stacey Simms 34:19
I'm curious to if you're looking at how people on board and adjust to Control IQ, because most people and again, we're biased because we think we're very well educated, right? When we were in Facebook groups, we talked to each other. Most people kind of went through the training, talk to their endo and then did all the troubleshooting themselves over the first two to three weeks. We're experiencing lows we didn't experience before so we decreased bezel or we increased ISF or whatever, whenever people had to adjust. Are you following like common practices to find out how to better teach? Okay, I'm sorry, we are
Steph Habif 34:51
we are and in fact, next week we're putting on a couple of webinars specifically for healthcare providers first because it's We've been hearing from them even before we launched into market when we started training healthcare providers on the control acute technology system. We have some best practices now to share now that it's been out there for a couple of months. And we've been able to connect some dots. We'll be putting on several webinars next week for health care providers, where we'll be talking about these best practices and tips and tricks. And we know that not just health care providers, but users and their family members want to be able to ask these questions, too. So I think Molly told me that maybe she'll be getting together with you again, Stacy for a future podcast.
Stacey Simms 35:36
Yes. So I'm going to be asking her all of these questions. As the webinar we can kind of see what the what the research shows people with right we're gonna be doing another episode in the near future about best practices. That's great.
Steph Habif 35:46
Yes. And so Molly's just such a great person to talk with about that. But for sure, I'll send you the information on the webinars next week. If you want to chime in and watch they'll be recorded as well. And we are starting to roll out all of that message. Now,
Stacey Simms 36:00
oh my gosh, that's wonderful. Because I gotta tell you, we laughed. We got ours so early, like I said, who waited for the email? Right? We just logged into the portal that my son's endocrinologist said, Hey, let me know what you've learned. Let me know how you adjust.
Steph Habif 36:15
Yeah, that's true. That's true for my family members as well. So one of my niece's has type one, and she's now I think, gosh, almost 12 that blows my mind 11 or 12. I can't believe it. And her dad reminds me on a regular basis that she teaches him, you know, about how to use the pump, and how to use the technology. And I've heard that from other families as well, like, well, we went to our endo appointment, and I'll say, How was it? Well, we taught her a lot, you know, we were able to teach her a lot.
Stacey Simms 36:47
It's so funny. Well, it's also new. It's it's amazing to realize that we're all kind of doing this together.
Steph Habif 36:52
The energy and enthusiasm for good that is in the diabetes community is so special and so unique.
And so I feel very lucky to be a part of it and to play some small role in trying to make it better for everybody.
Stacey Simms 37:07
I can't thank you enough for jumping on. As I said, I'm kind of a fan. So I don't think this was an unbiased interview. But your information is fantastic. And I thank you so much for jumping on and sharing some of it with us. Thank you so much stuff.
Steph Habif 37:19
Absolutely. And I look forward to continuing to listen to hear how other people you know, share their experiences and tell Benny to keep us informed.
Unknown Speaker 37:30
Unknown Speaker 37:36
you're listening to diabetes connections with Stacey Simms.
Stacey Simms 37:42
More information at Diabetes connections.com. The episode homepage always has the transcript and other links that you may need. And I will link up our last episode with Tandem there as well which was all about the launch of Control IQ. And as Steph mentioned, we're going to be talking to Molly Malloy and Others from Tandem. I'm in discussions with them this they've already agreed. It's just a question of scheduling, about getting someone to talk about best practices and other questions. You had so many questions for Tandem, that are more mechanical about how Control IQ works, that we want to do a second interview and really dig into the nitty gritty right, how do I know whether I need to adjust Bazell? How do I know whether it's the carb ratio issue and a bunch of questions of what you'd like to see in the next iteration of Control IQ. So that is coming. Thank you for your patience.
But it's always interesting, right to get a high level view of what's going on in these companies, and to try to look at the timeline as best we can. So that was really interesting that the reminders Steph gave me about how we do kind of get ahead of the curve around here, you know, not just on this podcast, but those of us who are engaged enough to be in Facebook groups and be on conference calls and listen to the investor calls these companies make and feel like we are familiar with the language and the labeling before it's even submitted to the FDA. So I'm in interested to see if the name of the T sport does change. Frankly, I really like it. But hey, that's I'm not in their marketing department. So we'll see.
Okay, tell me something good coming up in just a moment. But first, do you know about Dexcom clarity, it is their diabetes management software. And for a long time, I really thought it was just something our endo used, right? It was something we went there and he looked at it, but you can use it on the desktop or as an app on your phone. And it is an easy way to keep track of the big picture. I check it about once a week. Well, to be honest with you, I check it more now ever since we flipped over to Control IQ. I really like to look at it because and I noticed a psychological, right because it gets better and better. But it really does help me and Benny dial back and sees longer term trends. And it does help me not overreact to what happened for just one day, or even just one hour. The overlay reports help context to Benny's glucose levels and patterns. And then you can share the reports with your care team which makes appointments a lot more productive and it was essential for a remote appointment that we have Back in March, it was amazing. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at Diabetes connections.com and click on the Dexcom logo.
Tell me something good this week all about diabetes scholars, we talked about this, I try to let you know when it opens up. This is something that comes from Beyond Type 1 and they give more than 50 scholarships to students living with Type One Diabetes. So it's a combined $250,000. And these are for students who are in the high school class of 2020. entering their first year of college. This was a record number of scholarships for the organization. So a little bit about the kids 54 outstanding students representing 26 different states. They are advocates, student athletes, scientists, writers, actors, mathematicians, and leaders. Each of them of course lives with Type One, two beedis there is a list of the diabetes scholars class of 2020 that I will link up so you can peruse and see all these fantastic students who aren't going to change the world as they head off to college at a very uncertain time. Oh my goodness. And these are significant scholarships, they range from $1,000 for individuals to $5,000. If you have a student who is in high school, and you want to check this out, I will also link up how to enter they do not open again until January.
And I should mention that diabetes scholars was an independent organization for a long time. But when it kind of seemed like it for I don't know the reasons behind it, I hope I'm not privy to the inside information. But a couple of years ago, it seemed like they were going to go under and beyond type one scooped him up and put them under their umbrella. And now they are part of the big beyond type one family. And that's one of the really interesting things not to get off the subject here about beyond type one. You know, when they first started, a bunch of us who've been around for a while, kind of thought, Well, what is this fancy new social media feed going to do? Right? What is there Legacy going to be what kind of changes are they're going to make? And while I think that they have still differentiated themselves by appealing, perhaps more to young adults, and focusing a lot, I mean, their social media is amazing. They've also now really made a name for themselves by being an umbrella organization for smaller diabetes groups that it's really hard to survive with a low budget when you try to go yourself safe sitting as part of them. I think slipstream now is part of them. Lots and lots of be on type run lots of little organizations that make a big difference, but needed their help so I guess that's a Tell me something good as well for beyond type one.
If you haven't Tell me something good story. I'm in the process of gathering more I've been putting up the posts in the Facebook group and elsewhere. If you have some good news, I want to share it just let me know you can also email me Stacey at Diabetes connections.com and tell me something good.
I mentioned at the top of the show that we are going to be marking 13 years with an insult pump in July, really just late next week, July 4. Yeah, we were geniuses and decided to start it over Independence Day weekend, when we were not even at home. That's a story for another time that I have told that I tell in the book too. But we are also next week headed to the endocrinologist for the first time since January, we did not get an A1C when I had a telehealth appointment for Benny in March. So I'm really interested to see I mean, I know the drill from Dexcom . And while I don't share numbers, I think we are going to have one of if not the lowest A1C’s Benny's ever had thank you to Control IQ. But there's always more to talk about when we see the end, other than just the numbers. So I will keep you posted.
If there's anything that Benny wants me to share, or that we want to talk about, but I'm really looking forward to that appointment just because Gosh, we've never gone six months without seeing our endocrinologist and while I know a lot of people think it's a pain to go every three months i mean i think it's a pain to but I'd like checking in I love Dr. v. I always learned something we always ask about Questions, even though he except it was asks me questions now, which is really funny and I do enjoy. I think that when you have a kid who changes as much as my kid has over the years, just physically, you know, and everything else, it's really important, at least for me to have that kind of touchstone, so I am really looking forward to it. And I think Benny's grown an inch. He thinks he hasn't grown at all. Anyone. Let me measure him. I mean, how ridiculous so we'll get a bite, which is what I'm looking forward to as well.
Okay, we have so many great episodes on tap. I have all this technology stuff. I have some personal stories that I've been holding, always a mix around here about the technology, the news, the great stories from our community camp. Oh my gosh. So there's lots coming up. It's just a question of what comes next. If there's any breaking news, we'll do our very best, but please join Diabetes Connections, the group on Facebook, that is the best way to stay up to date as to what's coming and I often ask you all questions as well, which helps me figure out what episodes are really important to you. Thank you to my editor John Bukenas from audio editing solution. And as always, thank you for listening. I'm Stacey Simms. I'll see you back here next week until then be kind to yourself.
Unknown Speaker 45:12
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
Digging deeper into recent news from and about Dexcom. Stacey talks to Chief Technology Officer Jake Leach about the news that competitor Abbott has received approval for it's Libre 2 CGM. What does that mean for the marketplace? She also asks Jake about G6 sensor issues, data gathering and more.
Dexcom statement on data and privacy:
Patient safety is a top priority at Dexcom, and we design our products to be as safe and secure as possible, as the data that comes into our system from CGM devices is extremely important for patients and physicians in understanding and improving diabetes management. Dexcom works with government agencies, industry partners and security researchers to apply current best security practices for medical devices to help ensure the integrity and availability of our systems.
Our terms of data use are laid out for patients to consent or opt-out when they first set up a Dexcom account, so they know exactly how their data could be used and who will have access to it. In order for healthcare providers to access patient data, each patient must approve the sharing of their data to the healthcare provider through the CLARITY app. Another way patients can opt-out of sharing any of their data is by using the dedicated Dexcom receiver to view their glucose levels instead of a smart device.
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:22
Welcome to a bonus episode of Diabetes Connections. So glad to have you along as always. A bit of an unusual situation this week in the very last episode, and hopefully you've heard it. I spoke to Dexcom CEO Kevin Sayer. we taped that episode before the ADA conference actually took place. You know, the time shifting nature of podcasting. we taped these interviews ahead of time and then a couple of days or a week later, generally, the interviews air. A a couple of days after taping that interview, the FDA approved Abbott's Libre2 and this is a different CGM is able to continue transmit glucose data every minute. And users can now set the system to send alarms when their glucose is too high or too low. And previously, you had to scan the sensor in order to get any kind of glucose reads. So that is a big change, and frankly, more direct competition to Dexcom.
I have reached out to Abbott in the hopes of learning more and asking them any questions that you may have Dexcom though, immediately reached back out to me and asked if we wanted to talk more about CGM and how they stack up in the marketplace. Now, I am not going to pass up the opportunity to ask more of your questions. And that's why we have sort of a Dexcom double feature this week.
My usual disclaimer Dexcom as you have heard, and longtime listeners know Dexcom is a sponsor of this show. That means they pay me to have a commercial in the show. That sponsorship gets them a commercial, it does not get them any kind of approval over content. And so what does that mean? It means I don't send them all the questions. I have of time, we don't plan out what we're going to say. I hope you know, as you've listened that I don't hold back on questions and criticism from them. But we do have that relationship. And it's really important that you you know it right because we were doing news interviews here.
And this interview is with Dexcom CTO, Jake Leach. I will link up more information at the episode homepage. And as always, there is a transcript. So here is my interview with Dexcom’s chief technical officer.
Jake, thank you for jumping on and spending some time with me and my listeners. We always appreciate learning more about what's going on at Dexcom. So thank you.
Jake Leach 2:36
It's a pleasure to be here. Stacey. Thanks for having me.
Stacey Simms 2:38
Absolutely. So I just talked to Kevin Sayer. We did kind of a high level, you know what's new, what's next? How are things going? Talking about the G7? It he's of changes that have happened to the G6 COVID delays, that sort of thing. My listeners had a bunch of questions as this is the backdrop of course of the Libre news that came out Abbott's Libre 2 have got approval for use of the United States. The number one question that my listeners had was, can they talk about the price difference? I don't know if that's a CTO level question.
Jake Leach 3:11
Yeah, as much as you know, I'm involved in it. We basically, when we think about the cost of the product, the most important thing to be thinking about is making sure people have access to it. So insurance coverage, we feel really good about the fact that 98% of the private insurance companies do cover the product, as well as Medicare started covers it. And in states, many Medicaid systems do also cover the product as insurance. That's where we focus our time is really on on that. And we very few of our customers actually pay cash for the product. The vast majority of everybody gets it through insurance coverage.
Stacey Simms 3:48
When I look at the Libre, and full disclosure here, my husband has type two diabetes and he uses the Libre and Benny my son has used the Dexcom since 2013. Now, wow, yeah, it's funny to think about how much time has gone by. But one of the things I look at with the G7 coming and the you know, the bit that we know about it is that it will be much more like the Libre in terms of the sensor and transmitter in one. Can you speak to that in terms of the G7 in terms of size, insertion, that sort of thing?
Jake Leach 4:25
Yeah, so the G7 is, as you pointed out as an integrated sensor all in one, so it's the wearable device that goes on the body includes both the sensor, the transmitter, as well as the electronics inside the wearable that are both monitoring the center and then taking that signal and sending it via Bluetooth to the different integrated display devices whether that's a mobile phone, so a smartphone with an app on it, Android or iOS, or a insulin pump for automated insulin delivery systems. Other display devices, we have our receiver that is our proprietary handheld, some people really like that as their way to access the information. So our goal is to make it as interoperable as possible, which is one of the key important points about IC GM is that it's interoperable device
Stacey Simms 5:16
you And with that, I always get hung up on it. Because when I heard about interoperability A few years ago, in my head, it seemed like, Okay, well, I could switch out my pump, or I could switch out my sensor, I could use a different brand with this thing and kind of mix and match. And of course, insurance for most of us is the biggest problem for getting different devices. But it doesn't really work like that, does it? I mean, if a Dexcom g seven works with say, Omnipod five horizon, and with a T slim X to control IQ, people aren't really going to be able to just switch out devices like that and use the same sensor, are they?
Jake Leach 5:51
Yeah, as usual, it's more complicated as you look at it under the hood. But the key thing about the integration is that systems have to be designed To be able to be integrated. And so one of the big moves that we made when we transitioned between Gen four, and Gen five, and then subsequently Gen six, and as well as Gen seven, we moved to Bluetooth technology, which is a much more readily available technology within the display devices. So we moved to that. And when we did that, we designed an architecture that the intelligence of the system is all on the the wearable. So all the glucose calculations, all the information that you need is actually on the little transmitter device in G6, and will be in G seven as well. And so that is the device that can be accessed by multiple displays. If you think about it, you can use your mobile phone and the whole share feature that comes along with our mobile system, the remote monitoring feature, you can use that and at the same time, you can use a tandem controller to pump doing automated insulin delivery. And so the system is really designed to have that type of integration where you've got the right information in the right places and makes it interoperable. The systems have to be designed To be connected, for example, horizon five Omnipod five, the system that is in development by insolate is being designed to be integrated with both G6, that's what they're doing their studies with as well as G seven. So you have to do the design work and do the testing to ensure that it operates safely. But interoperability is a great thing. But it isn't as simple as just pulling and pulling everything it has to be designed and tested.
Stacey Simms 7:22
Yeah, it was interesting. I in my head, I always had it as well, this, you know, I can mix and match, I can figure out what I want. But when I talk to technical people, they always kind of smile at that because they understand more of the intricacies, I think of what it takes within the technology to make that kind of stuff happen. Whereas as the user, I just want to hokey pokey it around and use what I want. But we'll see as it goes down the road. Some other G7 basics that my listeners asked was, will the G7 have a shorter warm up and does it have a lower MARD? Is it more accurate than G6?
Jake Leach 7:55
Great questions. The warm up time is designed to be shorter than g6. And so we're As we're landing exactly how much shorter it's going to be, but it's definitely going to be a faster warmup. Also, the mard is the average difference between the sensor and the reference measurements that we measured the performance of the device and so on. That way, we want to ensure that we hit those iCGM standards. And so I think G7 definitely has the opportunity to perform better, but it definitely will meet those CGM standards, which are rigorous and important to ensure the product performs accurately throughout its life.
Stacey Simms 8:30
Can you give me a hint on the warm up? Is it going to be more an hour and 45 minutes or more?
Jake Leach 8:35
No, no, no, it's gonna be It'll be an hour or less.
Stacey Simms 8:40
You know, just had to double check on that.
Jake Leach 8:42
Yeah, no games there. We're just we're still trying to dial in exactly what's going to be to ensure we you know, the system has to be accurate. Second, it starts up but we do value short warmup time because we know how important it is when you know you're without the sensor data for that warmup period. So you want to make sure it starts up as fast as possible.
Stacey Simms 8:59
Yeah, it's interesting too. Because I'm probably an outlier but previous to we use the control IQ system with tandem previous to using that the two hour warmup really didn't bother me too much. I mean, it was only two hours especially if you came from like we did seven years with no CGM. It's really did not seem to be that big a deal. But now that we're using this algorithm, and the pump relies on the Dexcom data, two hours just seems like way too long to be without it.
Jake Leach 9:27
I agree. Really interesting.
Stacey Simms 9:29
Speaking of wear time, we've been very fortunate. Again, as I said, we've used Dexcom for a long time we do not really have a lot of issues knock on wood with it. He's of sensitivity which Kevin mentioned in his in our interview together, we went over that, but also with where time, but a lot of my listeners wanted me to ask if you are really checking into the people who can and there are many who can never seem to make it to 10 days on a sensor. Right who really was it whether it's because they have a young child or the body chemistry for whatever reason, it does seem to be an issue that many people can't get the full life out of a sensor.
Jake Leach 10:07
Can you address that? I know you're looking at it.
Jake Leach 10:09
Yeah, yeah, I've got, of course. So a couple things there. There's quite a few things we've done over time. And we continue to research on this. There's two aspects to sensor longevity. One of them is how long the sensor can remain accurate. And so within our device, we have algorithms that are checking the performance of the sensor at all times. And so there are times when we detect that that sensor signal is not accurate and not meeting the CGM standard. And so we we actually shut it off and that's when you get on the display, you get the sensor failed signal. That's basically we detected that that sensor is not working properly, and it's not going to return to functioning based on the data that we're seeing from it. As you mentioned, most people are able to get 10 days out of the sensor particularly now that we've made some changes with the adhesive as well. But there are some people who don't and with those folks, we often spend some extra time with our tech support, and kind of walk through what their issues are. And there's quite a few things that can be done to help sensors last longer. I mentioned the adhesive, we recently updated our adhesive, we've added an overlay. that's optional, people can ask if you have access to the clear adhesive that goes over the top of the white one that comes with the product. And so we're looking at lots of different ways.
Because what we found is everybody's a little different in terms of what their needs are and what works for them. And so we're trying to do is have as many options that we can to make the sensors stay on and heared. And it's really that's our philosophy around sensor longevity is if I really wanted to I could I could run a study and claim that G6 goes 15 days because I know the performance would meet that the problem is not all the centers would last that long. And so what we're really after is making sure all the sensors, as many as we can get out to the labeled timeframe, not just some of them. And I think that's one of the key differences that you'll see over time between different CGM companies is we're very focused on a high level liability, you're never going to get 100%. You know, sensors will come off and they'll get knocked off. It's a challenge. But it's one that we're very focused on trying to ensure that we can have the highest flow reliability possible.
Stacey Simms 12:12
Let me just follow up on that, because sensor sticking is one thing, right? I mean, I know that that's an issue in everybody's skin is different. And you have the overlays now, and the adhesive does seem to be sticking better to many people. Butwhat about people who have no trouble getting the adhesive to stick in the wire to stay in, but get recurrent sensor failure? Are there any best practices for people who seem to get that over and over again,
Jake Leach 12:36
there are and it's actually often comes down to, you know, sensor placement and you know, the sensors indicated for abdominal use. And so, we often instruct folks to try at different locations. We've also, if someone's really having repeated challenges and where they're getting those sensor failures, we do have specific capability with our tech support to work with that customer and look at their data and To help determine exactly what is going on, there's a number of things to we tend to see, that happens when people are more dehydrated. So you know, kind of making sure they're well hydrated and drinking water. But if someone's having consistent problems all the time, then we really want them to reach out to us and talk to our tech support. And we can get someone who is experienced, but you know that those types of issues to talk to them and look at their data and help work through it.
Stacey Simms 13:22
I don't mean to harp on it. But I've just, and I'm, I know, you may not be the right person to try to pin down on this, so forgive me, but I'm thinking like, Is it an insertion thing is it I mean, we've, anecdotally, the community has said, drink water, stick in the fattest place you possibly can maybe rock the sensor a little when you're inserting it so it doesn't go as deeply in like it's more shallow. I'm just curious with all the data that you will collect in these phone calls. If there's any, like I said, a best practice that would help or if it's just you know, you've got to talk to your local rep, maybe get an in person or zoom call lesson or talk to tech support, but you know, just a more concrete business advice, I think would be so helpful.
Jake Leach 14:01
Yeah, I think a lot of it does have to do with that insertion saying, like you said, you want to put it into a place where you've got good interstitial tissue. The other thing I've seen, too, is, um, you want to make sure that it's not at a place where you're going to compress the center a lot, you know, if it's under compression, you're not getting the same amount of perfusion there have glucose under the skin. And so that can also lead to issues. There is something recently that we've released in a product that has really solved a number of issues in that people were getting sensor failures during really high glucose excursions. We've sent some solved that problem with a new version of our transmitter that is now out in the market, almost everybody has that device. Now, it did make quite a dent in those we were detecting the algorithm was detecting that really high glucose as a potential issue. And over time, we've learned through looking at the data that that wasn't an actual issue until we were able to correct that in a recent version of the device. But yeah, it does come down to kind of working through sensor insertion and placement in Don't have data that validates, you know, some of those techniques that you mentioned that says it will work if you do these things. But we have heard from the community, and in our own times speaking with patients that it has been very helpful. And some of those concepts you just mentioned.
Stacey Simms 15:14
Jake, I'm sorry, can I ask you to clarify? It may have gone over my head. But when you were mentioning the newer transmitter that is out, can you just clarify what you meant by when it was reading very high blood glucose? And that was affecting the sensor? And then it sounded like you said, but that wasn't the case. Can you just clarify that?
Jake Leach 15:31
Yeah, sure. So what it was, was that during really high glucose excursions, the device was detecting a potential sensor failure where it wasn't the sensor failure. There's nothing wrong with the sensor. It was working. But you know, it's one of those things that once you once you get a product on the market, you learn more about it. And so we've made several iterations to the G6 even since it's been in the market for several years to improve it. And that is one of the cases that we saw patients running into, that we resolved with the newest version of the device is that it doesn't give The sensor error when when there was really high glucose excursion,
Jake Leach 16:03
and I'm just curious cuz it does sound like you've resolved it. What is really high glucose? Like over 400?
Jake Leach 16:10
Oh, well north of 4, 5, 6 hundred.
Oh my goodness,
Jake Leach 16:14
yeah, we're really, really high glucose.
Stacey Simms 16:16
So if somebody has a teenager who's like bumped up to 250 and getting sensor failure, that's not the issue.
Jake Leach 16:21
That's not the issue. No, no, no, not in not in those,
Stacey Simms 16:24
because everybody has a different idea of really high glucose. So Thanks for clarifying.
Jake Leach 16:27
Yeah, that's a good thing to clarify. Because, like you mentioned,
Stacey Simms 16:32
you know, another question that my listeners had was about data. And we've talked a little bit here about some of the data that you collect. And I don't know if it's different internationally, but to speak about the data.
Jake Leach 16:43
Yeah, sure. Of course, first of all, data privacy is very important, both just fundamentally and philosophically as well as to be in compliance with all the global regulation we're seeing in this area of data privacy. There's a lot of advancements in the laws and regulate Around consent, and users granting access to their data, because in the end, it's the users data. We're just a steward of it. And so we take it very seriously. And so in our processes and our controls, that's how we proceed. So the data that comes into our systems from the CGM devices are used for things like share. So we provide the share system, the remote monitoring, that connectivity is super important. The data is also through that same system made available to the clarity application for use by the patients or customers or their physician. And then we also have that data in a safe lockdown repository that can be used by our tech support agents. If users are having track challenges, like we talked about tech support agents can actually log in and work with that user on their specific data. But
Stacey Simms 17:48
hey, it's Stacey jumping in here. I need to insert myself into the interview with the episode here because we hADAn audio issue right there and it was completely my fault. So apologies. Dexcom is going gonna give you a full statement on data and privacy, and I will link it up in the show notes. So Jake can kind of continue his thought that way and give you the full statement. One thing he said that I thought was very interesting though was if you are concerned about privacy and want to opt out, you can just use the receiver all by itself. They don't collect any data that way. But then you can't use clarity or share the information online with caregivers or your health team. But if you want to opt out, that is one way to do it and still use the Dexcom system. I did follow up the data question with one about transmitting data and why it's limited to certain devices. If you use a tandem pump like we do, for example, the transmitter can send data to your phone and to the to the mix to pump but then not also to the receiver.
Jake Leach 18:52
Yeah, the ad goes down into the specific engineering of the device deep down inside the wearable, for example to the transmitter producer. There's a battery in there. Every connection to a display device takes a Bluetooth communication channel. And so today, which is six, we support two channels, one for mobile phone and one for a medical device such as the insulin pump, or the Dexcom. receiver, it can support to have those connections to the med devices, because we need one available for a phone. We are looking in the future to allow multiple different types of devices you can imagine watches and other things. And so that technology is we're working the architecture of that. But the key there is that circuitry has to be low enough power that it doesn't use up the battery. We specifically designed G6 to be reliable for that 90 day period for the mere life. And so we couldn't put that system you can't support more than those two connection.
Stacey Simms 19:45
Yeah, practically speaking for us. It's plenty. I was just curious about the thinking behind it. And is that going to be the same thing with the Omnipod five? horizon? I'm laughing because I have to figure out how to say that Omnipod five. will it be the same thing Work goes phone and PDM or something, or is that a different setup altogether?
Jake Leach 20:04
It's a little different. But it's it with the G6 integration, G6 will support the Omnipod five as well as a mobile app like a G6 app. So it does support that. And as we look into the future towards things like g seven and future versions of G7, we are looking at architectures that could support even more display devices, more than just two.
Stacey Simms 20:24
And I'll hope to talk to Insulet in the future to get the specifics. But as I'm asking you this question, that sounds a little ridiculous, because where would it show up on the pod? I guess it would show up on a PDF if you use that instead of a phone.
Jake Leach 20:34
Yeah, I think one way to look at it for all of these automated insulin delivery systems is you want good communication between the algorithm that is doing all of the calculations for how much influence to deliver, you want a good connection between that and the glucose signal and the pump that's doing the delivery. That's part of the system engineering of the of the product and part of G6 was designed specifically for interoperability with so that it can support use cases like that
Stacey Simms 20:59
you mentioned To watch, I did talk to Kevin about this. So I'm sorry to bring it up again. But my listeners are really waiting for that direct to watch component. Can you speak to that from your perspective?
Jake Leach 21:11
Yeah, sure. So, you know, it's a it's a feature that we've been working on in development for for quite a while. And as we've worked through it, well, it turns out, you know, on our side, as well as on the leaves, Apple Watches is one of the one of the examples other than a significant amount of engineering. I think that we all underestimated when we first started talking about that product in the way that it interacts with the G7, as well as the phone app. And so we've been working with Apple closely know, over the last couple of years, actually, when when they announced this feature, it was really kind of a prototype feature. We started working with them closely on it, making quite a few updates on both sides to support that type of a feature. And so while we don't have any dates, where we're going to launch it, it's important feature that we know, adds flexibility to users lives and so we will continue to work on it. But at this point in time, we don't have a specific comment.
Stacey Simms 21:57
Yeah, I'm curious um, before I let you go here, DiabetesMine, which is a really great news source, if as you listen, you're not familiar, I always read them. I think they're fantastic. They recently, earlier this year, put out an article, headline “39 potential new continuous glucose monitors for diabetes,” as some of these are never going to happen. A lot of these are, you know, non invasive wearables that, you know, look at a headline, and we may never see again, but some of these are going to happen. Jake, I know you all are watching the competition. You know, I know that, you know, Dexcom has enjoyed a long time here of not having a lot of competition, especially the United States. I'll give you the floor. Are you guys ready to take on these companies?
Jake Leach 22:39
Absolutely. I think the just notion that there's that many different companies and working in this space is kind of validating the concept that continuous glucose monitoring is the standard of care for diabetes management and so perfectly comfortable with Mark people working in this space and we continue to drive forward all of our efforts on advancing the technologies, whether it The performance of the sensor the longevity of the sensor, particularly the ease of use, and the integration of our CGM with other devices. And you know from what we've seen, it's a very large opportunity. There's a lot of people who could benefit from CGM, so we're comfortable not being the only player. And we actually going to welcome expansion of CGM space across the globe with other companies as well as tech from
Jake Leach 23:23
Well, thank you so much for jumping on. I feel like I got a double feature of Dexcom this week. So thank you for the info. It's always great to catch up.
Jake Leach 23:29
I appreciate it. Stacey. Thanks for having me.
Jake Leach 23:37
You're listening to diabetes connections
Jake Leach 23:39
with Stacey Sims.
Stacey Simms 23:43
More information in the show notes as always, the episode homepage and there is a transcript there there are important links. Same thing if you're listening in a podcast app, you should be able to get to the show notes. But you know some apps are weird and they don't post links and Apple podcasts which is the most common one. Used as kind of bad for that sort of thing. So I always put it on the episode homepage, which you can find at Diabetes connections.com.
And a little bit on that audio error if you're interested. I mean, here's some inside baseball. But here's basically what happened. Whenever I do a remote interview, and probably 90% of the interviews on this podcast are remote, right? We're not together, I do them generally through Skype. And my computer is set up so that it automatically records when a Skype call is placed. I have a backup recorder. For those of you who are technical and want to know it's an h5 zoom, and it's fabulous. But it's an external recorder that's plugged into the computer and has an SD card inside of it. So this call like a couple I've done recently, our zoom calls, my computer is not set up to automatically record and you know, everybody knows zoom by now if you're not the host, you don't have the power to record well 99% of the time, I asked the host to please record it on their end and then send it to me as a backup and I just roll the h5 zoom over here. forgot to ask them To hit record, there's always a PR person on these calls, you know, Jake doesn't have to worry about it, they'll take care of it. But I forgot to ask her to do that. So I'm rolling on my end, but they weren't rolling on there. And then and this has never happened before, the SD card was full. And it's a huge SD card. I don't know what the data is. I'm not going to pop it out. Now, look, but you know, I cleared out periodically, but probably only once every six months. And oh, my gosh, I completely forgot to do it. So it just clicked off and stopped recording. I share this with you. Because I mean, we're more than 300 episodes in right. We're close. You know me, I know some of you, but I thought you might appreciate it behind the scenes look at some of the nonsense that goes on here. I was able to stop the interview, ask them to start rolling and then restart. But we did lose that part, which I hate about the data. I have talked to Dexcom in the past about data.
I will link up the specific interview where I talked to them about that. And I will link up the statement that they gave me after the fact I asked them to email me some information about that. But you know, hey, we're not perfect around here and we don't pretend to be the next Episode shouldn't be an interview with tandem. if things work out. We're still in the process of moving some things around with ADA and breaking news, we always like to do the best we can. So tandem should be up next, please join the Facebook group Diabetes Connections, the group to stay up to date. And that's the best way to get your questions into these interviews. When I have something like this, I always ask and you guys are amazing at getting me great questions and letting me know what you want to talk about. So I appreciate that very much. Thank you as always to my editor john Buchanan's from audio editing solutions. And thank you very much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself, even if your SD card is full.
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
Transcribed by https://otter.ai
Dexcom is featured in a lot of headlines coming out of this year's just-completed ADA Scientific Sessions. Stacey talks to CEO Kevin Sayer about everything from how COVID has impacted the G7 timeline, what the G7 will actually feature, adhesive changes and more. She asks why Europe got approval for back of arm placement and when we might see that in the USA and, once again, we check in on direct to watch progress.
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Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Unknown Speaker 0:17
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:23
This week catching up with Dexcom at the ADA Scientific Sessions a time when a lot of new studies are presented. But this year COVID-19 means delays for expected tech, including Dexcom G7, which was moving ahead with trials.
Kevin Sayer 0:38
It was in full force in March it was gonna continue throughout the rest of the year that came to a grinding halt. We are in the process now of resuming and replanting that schedule.
Stacey Simms 0:50
Dexcom CEO Kevin Sayer goes more in depth about the G7 we also talk about adhesive changes, working with European pump manufacturers and what else Coming down the line and tell me something good a major league dream comes true. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of Diabetes Connections. I am so glad to have you along. I'm your host Stacey Simms and you need to educate and inspire about diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two. He is now 15. My husband lives with type two diabetes. I don't have any kind of diabetes. I have a background in broadcasting and local radio and television and that is how you get the show.
The American Diabetes Association Scientific Sessions is a conference where every year many studies many many studies are released and thousands of people gathered to hear what's new and to do some serious schmoozing Of course this year the entire conference was virtual, which is a terrific opportunity. You know maybe you're able to register and jump online. A lot of new media outlets offered their own platforms for you to kind of take part into the virtual conference. I've never been to a da. And while I don't plan on reading every study, you really can go online and see just about everything. I'm going to link up some of the major links, including the one right to the conference, and some of the abstracts. I think every abstract was on one of the pages I saw. So I will link up all of that information on the episode homepage. And I've already put a lot of it out on social media. And chances are good that as this episode airs the Tuesday after ADA that you may have read about a lot of these things you may have seen some of the studies, but I really like going in depth with the the newsmakers as we call them as I used to work in News Radio, but you know, the people who are putting out these studies, so this is the first of what I hope are many interviews over the next couple of weeks. I have confirmation from several of the pump manufacturers. I've reached out to some of the other tech people and people doing these studies and we'll have more information on And follow up on some of the information that came out.
A quick disclaimer. As always, I always like to make this clear. Dexcom is a sponsor of this show, you'll hear their commercial later on, but they don't have any editorial control. And that means they don't tell me what to say or what to ask when I have Kevin Sayer or anybody on from Dexcom. longtime listeners know the drill. But I just like to make that clear. I'll also add we just had Kevin on the show a few weeks back, it did a whole episode when they announced that they were going to have CGM access to hospitals because of COVID-19. And I asked our Facebook group if it was a little too much Dexcom. But overwhelmingly, they said no, give us as much information as you can. So we will get to Kevin in just a moment.
But first Diabetes Connections is brought to you by One Drop. You know, I spoke to the people at One Drop and I was really impressed at how much they get diabetes. It really makes 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 Let 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 philosophies send you test strips with a 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.
The ADA Scientific Sessions this year pretty different all virtual, but the information is still coming out. There's so much of it as always, and I was able to talk to Dexcom. now this interview happened Friday just as ADA began. And while we were able to talk about things that were going to be presented over the weekend, there's always a chance breaking news happens since the interview follow along on social media for more information if anything changed, of course we'd put it out that way. And I will link up more information in the show notes.
Quick bit of housekeeping, there are a couple of terms that we throw around here that I want to make sure to just to define really quickly and kind of loosely, most of you are familiar. MARD is a measurement for CGM, the lower the MARD, the better, the more accurate and we talked about that. We also mentioned iCGM. That is a new we're just about two years old classification from the FDA here in the United States, where an integrated continuous glucose monitoring system can include automated insulin dosing systems, you know, insulin pumps, it can integrate other devices like the Dexcom G6 does with the tandem pump, that sort of thing. It also classifies it as a new type of device in a different class for the FDA, which means different things for approval going forward. I will link up more information on that but when he says iCGM, that's what he's talking about. Here is my interview with Dexcom’s Kevin Sayer.
Kevin, thanks so much for talking to me. It hasn't been so long. Since we last spoke, but with the ADA once I get a roundup of everything that was happening, thanks for jumping on.
Kevin Sayer 6:06
Well, thanks for having me again, Stacey. It's always fun,
Stacey Simms 6:09
we have a lot to catch up on some things that we just talked about a few weeks ago. I'm going to start if I may, with something that may seem very mundane, but really caught my eye. And that is the approval in Europe, of placement on the upper back of the arm. We are a largely US based podcast, we do have large international listeners who are very interested in Dexcom. But can you talk a little bit about how that came to be? And as we have talked about before, many people here in the US were on the back of their arm, even though it's not FDA approved. So I guess the second part of that question is, are you submitting for approval here too?
Kevin Sayer 6:48
Well, I'll answer all those questions. And let's start with your You are correct. People have been wearing this thing on the back of their arm for a long time, even though legally and regulatory, I cannot encourage that on a podcast. The fact is when you go to, in particular to like a kid's diabetes meeting, that's where you see all the sensors. And so we've seen that a lot in Europe, we had done some studies and there was some evidence presented that was compelling enough to the authorities that we can get that arm indication. And so we filed that and we got it. Also combining that in Europe, we got a pregnancy indication as well. So we were in a really good position with with respect to C mark. With US regulations, we have that iCGM standard. And the evidence that we presented in Europe for approval isn't strong enough to meet those iCGM standards that we have with our G6 system. But we are working on putting together some evidence in the US that we think would work and will be good enough. So we will ultimately seek a G6 arm indication. I think the other thing to look forward to as far as that when we run our G7 pivotal study, we're going to run the study on In the back of the arm and on the abdomen and on for pediatric patients and on the upper medics as well. So we'll have three labeled sites there. And that will give our patients literally the optionality labor for label indications where the center and the in the most popular places.
Stacey Simms 8:17
It's interesting, when you have a chance, I understand why you wouldn't go back with the G6 and redo things like that, you know, I would imagine the cost alone would be prohibitive. But with the G7 in new systems, it must be interesting to hear from customers, not only things like arm placement, or I wonder if there are other things that you might test. In other words, I have always heard and I guess you can confirm I don't know if it's the case, that the reason that pumps and CGM should not be put through airport scanners is because it wasn't tested there. Is that the kind of thing that in the future we might see you You trying? You know, hey, let's test it with this condition. Let's test it under that condition. I mean, does that come into play?
Kevin Sayer 8:55
we do all of the testing required under federal regs. For those things, I mean, I've worn my CGM through scanner, never worn anything through the scanner through the suitcase, mind you better but I will tell you some of the things we do there is, you do have a very good question there. Because you do ask, do we listen and what are some of the things we try before we lock in on our product design and what do we test and some of the things we've we've talked through and thought about what G7 because we've been at this for quite a while we've had multiple size configurations. Before we locked in on what we did.
We've made it smaller, we've made it bigger. We've liked it on the size we like it on because that was the optimal configuration for the electronics and you get to a point sometimes when things are so small, you can almost lose dexterity or the ability to use it properly. We know people want a smaller less visible sensor. As we look going forward. We will continue to focus on that. we tried numerous adhesives with G7 in our research work, what sticks the most without causing problems, etc. We, we even experiment, not just from a customer standpoint or customer feedback standpoint, but from a scientific standpoint, what's the shortest we can make the sensor and still get the outcome and the accuracy that we want. So we've spent enough time on the G7 system, to whereby we've tested a number of things of that nature to figure out what the best configuration we can get is. And we balance that with getting the product approved, and again, through the iCGM standards. So there will always be when we launch a new product, there will always be some features that we leave on the table that we don't put in it that we would like to put in the next generation. But ultimately, we have to stop and say that this is good enough. It's my job to make them stop. I promise you, the guys have more great ideas than you could ever imagine. But that is a very important part of our process to really listen and test those things. As we go.
Unknown Speaker 11:00
Okay, so you mentioned you've brought up now the G7. So let's jump ahead. I do have some G6 questions, but let's jump ahead and look at that. Where are you on the G7? Did the has COVID delayed things? I know you hate to put dates out there..
Kevin Sayer 11:13
All right, and I won't put a final date out there. But COVID has delayed things on a couple of fronts. The major one is the clinical study any of your listeners and involved in one of our pivotal studies where our patients go into the clinic for you know, at least half a day, at least 12 hours to have blood drawn and tested in the lab instrument is glucose values are raised and lowered. All those types of activities have ceased due to the COVID situation and we had a very aggressive clinical trial schedule. Literally, it was in full force in March and was going to continue throughout the rest of the year that came to a grinding halt.
We are in the process now of resuming and re planning that schedule, but we still don't know all the dynamics of the schedule and the best example I can give you if you go to a large Diabetes Center They might have had four or five patients at the same time in the room being monitored, while the social distancing Are we going to have to? Are we going to be able to have four or five? And what protocols are the various centers going to be running with respect to those clinical trials? So we are really literally out there rescheduling the pivotal study for the G7 system. That is the biggest delay. The other thing we have experienced, and it's to a lesser extent, is just the effect of COVID-19 on all of the people involved in this process. You know, I was talking to somebody the other day, and they used to quote, it takes a village to raise a child it sure as heck takes a community to build a product. And we do depend on a number of other suppliers who encountered their own COVID difficulties, the easiest one that comes to mind which you summon the molds for the plastic or an 18 month lead time and the molding company was hit by COVID and literally shut their whole factory down for a month. And that's not the mold makers. That's not a problem that just does Just reality, we put all of the operational pieces of the schedule back together. We're comfortable with those timeframes.
Now we've got to get the pivotal study up and running and get it big enough. And I will go back to you know, I've talked about iCGM and the bar that the FDA has said, This isn't a study, we can go run with 80 patients and call it a day, there's going to be several hundred patients here. To the extent statistically we can come up with models to decrease the size of this study, we will, but we do analyze it, because the criteria are such and the one that they explained to me that rang the truest in the mid range of the good range of sensors, you know, timing range between 70 and 180. If we have 1000 data points, and if seven of those are off by 40 points, or 40%, the whole trials done, and our biggest source of error in the studies is not the sensor, and it's not because the centers aren't great because they are, there's just so many pieces of paper and so many things that have to happen. So we are really refining that process. Given the fact that we can't run studies now, we're very optimistic once we get them going, and we'll do well. We're going to run a study for Europe, in addition to that, and file that separately, so you'll hear more timeframes from us. But it's going to take longer than even a couple of months to have the perfect schedule laid out a timeframe is not coming for a while.
Stacey Simms 14:17
Can you share anything about the G7? In terms of what makes it different? And why move ahead with a new type of sensor?
Kevin Sayer 14:26
and I'll go back to my first statement to listening. The one feature our patients have all said they want a smaller, and that's pretty universal. When we embarked on this many years ago, we literally started with something the size of an m&m. Now the G7 is a little bigger than a nickel. It's not as small as an m&m, but it's still pretty small. And we wanted to do that. We wanted to eliminate some of the difficulties with respect to transmitters and pairing the whole G7 system is disposable. We also when we looked at G7, and when we started down this path We designed this from the very beginning to manufacturer in an automated manner. There will be humans manning the machines but these aren't going to be human lives. Everything else we've done we designed around the fact that we manually put everything together or have many manual processes now G6 is about to the point where that will be pretty much all automated or manual lines will go away but we wanted to build a product that we could build 10s if not hundreds of millions of in a repeatable manner and our previous generations or product, even G6 up until now I think G6 has now crossed the barrier where we can build lots of them but build g five system says you could have never got to the volumes we anticipate getting to as as technology continues to expand and explode and i and i think what we've created and our goal which he said is to give us a product configuration that anybody can wear and then it will have multi uses. It's as big a step forward from G6 is G6 was for G five.
Stacey Simms 15:56
When you say the whole system is disposable in the size of a nickel Retreat you want to avoid transmitter issues? Is it all in one is the transmitter and the sensor
Kevin Sayer 16:04
transmitter and sensor all built into one unit yes
Stacey Simms 16:07
I'm you know, having been with Dexcom for more than six years now and I think we started in the g4 Platinum I'm trying to visualize
Kevin Sayer 16:16
No, it's much smaller and much thinner and it literally if you wear a G7 you have no idea it’s on your body.
Stacey Simms 16:25
Really interesting and you anticipated having a similar more similar you know accuracy as the G6
Kevin Sayer 16:31
yes, yes, it has to meet the iCGM standards and and so we've we're designing it that way. We're designing the algorithm the pivotal studies along those lines. And right now what what is becoming very clear to us as we go through these statistics, while MARD is always important from an overall perspective, the iCGM standards are more important than than just the margin number is important that these things be reliable and offer the same experience every time. So we Certainly you have to have a good MARD to be approved on those iCGM standards, but the reliability of the sensors is every bit as important. We're focused on both.
Stacey Simms 17:09
Well, as we look forward to that, as you said, it'll be a while because of COVID and other delays. My listeners, as always have questions and one that has come up quite a bit. We'll go back here to the G6 and current manufacturing is a question about whether the adhesive had changed recently on the G6. As always with me, it's anecdotal. I don't have access to studies or thousands of people. But we've noticed within the Facebook group that I run for the podcast that more people are reporting, rashes and problems with the adhesive with the G6 than they had in months and years past and the question came up is has something changed?
Kevin Sayer 17:43
Yes, it has. There's a very fine balance. On the adhesive side. We warranty our product for 10 days. We say this as a 10 day sensor, and one of our most common occurrences of replacing a sensor as it falls off, in fact, the most common one so for years, we have studied adhesives and wanted to make an adhesive change that would give patients a better experience and have that sensor last the entire 10 days. And so we did change the adhesive out to something that was more sticky on the one and we are very happy to report that we are seeing a great reduction in the number of sensors that fall off people. So we are delivering on end to the experience. On the other side of that we have seen an increase in allergic reaction to that new adhesive. We have some data on our website. And we have done some clinically based work for those patients to give them some options to whereby the adhesive will not have that same effect that there's some mitigate mitigations that you can make to do that. So if you contact us, again, I believe it's on our website or also you can contact our tech support. There are some clinically based solutions that we can offer.
Stacey Simms 18:46
All right, so I will refer people to the website and we'll keep helping each other but I think people wanted to make sure and just get confirmation that something had changed.
Kevin Sayer 18:53
Well we did change it we did
Stacey Simms 18:54
Dexcom offers the free over patch when people request it you know to help it be more simple. Has that changed at all? Or that seems to be the same?
Kevin Sayer 19:02
I believe, yeah, the over patches are the same.
Stacey Simms 19:04
Okay, I feel like this is almost like when I used to ask you about Android, but it popped up in my timeline that three years ago, the Apple Watch product came out and it was a huge press release from Apple about this is gonna change your health, this is going to change you know, everything. And in that article was, of course, and you'll be able to see your blood glucose from your Dexcom. They also would hope to get on your watch on your watch.
Kevin Sayer 19:27
We're always supported it. We're not direct to watch it yet. That project has has proved to be extremely difficult. The architecture of a watch is different than the architecture of the of the mobile phone. And in the middle of that I believe there have been changes made to the watch architecture as well. We as we've looked at and prioritized our projects and our resources and we look at software things we need to work on. While that project is still on our list, getting more reliability went to patients each and every day has been above that. And this taken some precedent to it, we will eventually get there.
But there's also some interesting issues with the watch that we didn't even contemplate when that release came out. And I'll give you the perfect example. You've got to charge your watch every day. How do you get that alert on your wrist? When your watches charging, and things of that nature, there is a different experience, and different safety features are going to be required to be implemented over time. We're working through it and thinking about it. We aren't ready and in all fairness, as we've looked at resources, if we're picking for example, between G7 and the watch, look, I love to watch you use I use all these tech gadgets all the time, and I put different ones on, we will eventually get there is a lot more complex than we envisioned when we started down the path. Probably the most loyal Apple Watch, customers are Dexcom patients. If you're an apple watch on an Apple phone and use an apple watch those patients use the Dexcom app on that watch a lot. Even through the phone. The watch experience has been a very good experience for our patients who use it
Unknown Speaker 21:00
What about other watches like Fitbit or devices like that
Kevin Sayer 21:03
we display on the samsung watches or some of the Android platforms now we've had discussions with Fitbit. Fitbit just got acquired. And I think they're regrouping and figuring out where they go. I think it'd be wonderful to offer our patients solutions along those lines, it becomes a question of do you get the whole device safety experience on that display? And how do we label it and what do we do? But these are the things we're looking at and pursuing?
Stacey Simms 21:27
Another question I got from a listener was all about can Kevin talk about other Dexcom partnerships with newer pumps, at least new to the US like, Ypsodmed if I'm saying it correctly, and other you know, European and worldwide, pump companies, is there anything new to talk about with those partners?
Kevin Sayer 21:45
You know what? We just signed an arrangement with Ypsomed to work with them, their pump will pair with our sensor. It'll be in Europe first. They will bring it to the United States at some point in time. They have also signed an agreement to license, our type zero technology, the algorithm that we have that has been involved in numerous studies around the world and is the basis for control IQ as well. So they will use that algorithm and it will continue to work with our sensor. I don't know all their US plans, I won't speak on their behalf. So we'll see where that ends up.
We do have research relationships with a number of entities getting to commercialization, we'll just have to see these partnerships. You know, I would tell you that the 10 of joint product offering is doing extremely well we get great feedback. The Insulet study has started back up. I look forward to the day when all these things are on the market. Stacey, giving patients the choice to have these automated systems will be a wonderful thing for patients and they've been very patient waiting for us and for our partners to get them out. I think when the day comes it will be fabulous but we cannot pair with every single. It is kind of a hard balance. pairing with every single pump is a lot of work to support in house but we want To be interoperable, that we want to get products out, we really want to get solutions out there. And we're happy with the partners that we have. In the US, I think initiatives like the loop initiative where they're gonna develop an algorithm that could work on a number of pumps and number systems might be a very good option for Dexcom to pair with others because the pairing is done by them in the app, not necessarily by work by us. So over time, the interoperability strategies one will continue to challenge and we are prepared to work with anybody that can enhance patient's lives and help our business
Stacey Simms 23:32
it just a clarification question you mentioned Dexcom owns the type zero algorithm, which is the brains let's say of control IQ really are the basis of it if it's used in another pump, if it's in the Ypsomed pump, is it the same exact bit of software? Or do they are there changes or
Kevin Sayer 23:50
tweaks? No, I'm I know that Tandem has made changes to the app and how it works, but the fundamental math and the algorithm will more than likely be the same. I can't speak Exactly. To what Tandem’s done, but I'm pretty confident it'll be a similar experience from an accuracy and from a patient perspective is the way it works. And then we're working with our type zero team to develop other algorithms, and advanced versions of what they've learned in the past. We are free to license to others as well.
Stacey Simms 24:15
It'll be interesting to see how that evolves. And when we talk about interoperability, I actually have a little bit of trouble with that, because in my head, and I've described it like this before, it seems like it should be more like Mr. Potato Head, right? Like I have the base, and then I get to put the ears on that I want the eyes on that I want the feet or whatever. But it's not exactly that easy, right? It wouldn't be a question of like, grab a Medtronic pump, but I get to slap a Dexcom sensor on or you know, buy or anything like that, right? It's not No,
Kevin Sayer 24:42
no, it's not that simple at all. And in all fairness, I think Dexcom has done a better job and design our product to be interoperable better than anybody else. And I can give you a very simple example. I tried to close this many years ago. Our transmitters designed to talk to multiple devices at this Same time to more than one. And that took a lot of time and a lot of engineering and a lot of dollars. And so I raised the question, why are we talking to multiple things? Let's just talk to one. They all kind of like I should know. Well, now think about things. Now you can talk to your tandem pumpers. You can also talk to a phone app at the same time. What a wonderful feature for our patients. And what a wonderful feature as our software changes or gets an advanced feature, that maybe our pump partners or a pen partner or somebody else doesn't have be able to talk to both is a wonderful opportunity for our patients if they want to use both apps. And I think over time, particularly as we look at refining your software experience, it seems to be more important.
Stacey Simms 25:41
Last listener question was about compression lows. I don't know if what they're really called. But anecdotally you sleep on the place for the Dexcom is the circulation slows or for whatever reason you get a fake low. I'm sure you're all aware of this. are you addressing it you think it will be cleared up with the G7
Kevin Sayer 25:59
I don't know. It'll be completely cleared up for G7, I would hope it decreases because, and I can only speak from a theoretical perspective, the sensor is smaller and the transmitter is less bulky. So there might be less pressure pressed on it. But compression has existed in all sensors forever. I have asked the team to look at other ways to deal with the compression issue and come up with some ideas. And they have some very good ones. It wouldn't be in the first version of G7. But I we've got a couple of thoughts that I won't share, because they're very proprietary. I think we have some good answers for compression over time. The question becomes, though, Stacey, and this gets back to the patient experience. And since your listeners are familiar with us, if it's compression low, do we still alert you and wake you up and tell you to roll over? Or do we guess what your glucose value should be and just keep going? What is much safer is to alert you and wake you up and say you're having a compression error roll over? It's not a real low. But do you all want to be woke up for with that type of error or would you rather is Wait for a half an hour and say I was just compressions con, these are the kind of things we shouldn't talk about, and contemplate within the engineering group, which is why these guys want to work here. It's really interesting.
Stacey Simms 27:10
Hey, there's so much information that is coming out at ADA that we haven't even touched on. And I you know, as you listen, I will link up a lot of the information. There's the G6 two year anniversary study. There’s a lot of information about the hybrid closed loop partnerships that's coming out. I'm curious, the launch of the G6 Pro. Honestly, I'm not sure that too many listeners of this podcast would use a product like that, whether it's blinded or they just get it temporarily from their their provider. But talk to us a little bit about that. Who is that for? What was the demand like for that?
Kevin Sayer 27:42
Well, the demand on that has been huge. And the demand starts in the physician offices. And literally, if you think about Dexcom, our pro product right now is a g4. It's not even G5 and our physicians have never had the opportunity to be able to say to a patient, let me Let you have a CGM experience similar to what you would have if you're one. So for your audience in particular for patients who would like to know what CGM is like the physician can output a unit on it. This is exactly the G6 system. The G6 Pro is a transmitter to sensor in a single box. Patient wears it and it's disposed of at the end of the sensor where period, the reason you have the blinded app physicians have asked for it. We think for patients unblinded is obviously the way to go because they can learn what to do with their own management. But the fact is, for a physician, there's a baseline check as to, hey, how's my treatment working? Or how's this treatment working in a type two non insulin taking patient in particular, you can put that sensor on blinded for a 10 day period and get a readout and go, wow, this is working.
the audience is very much from an educational and therapeutic perspective. In the professional environment. We have priced it in a manner to whereby the physicians can really acquire this at a reasonable cost. It will also be you know, at As you look at what's happened with COVID, as well, taking newly diagnosed patient and telemedicine, you can put a patient on this professional system. And if the patient uses the date alive, the physician can use the data live. As we've gone through the the virus situation, the the learnings we've had from our physicians about how CGM actually works. It's been really interesting. I mean, I get phone calls, do you know I can watch my patients from home I didn't know you could watch your patients from home and clarity, we reduce the three hour time lag, we've got near real time. And that's helpful. So you know, in this new age, where you have telemedicine and all the information that physicians need to get, we think G6 pro fits in very nicely and we want patients to be able to have that experience and learn what index comm is like rather than than other things and learn the information they can get ultimately for us as timing range becomes the measure. Now let's take it a step further. If you're a physician and your key measure Simon range Your patient doesn't wear a sensor, you can just put a blinded Dexcom on him, send him home for 10 days and come back, download it, you can read it. And you know what that patient assignment ranges. It has a number of great uses for us and will be a platform for growth going forward, we think is going to be very, very, very important.
Stacey Simms 30:16
I didn't realize it hadn't been updated since g4 that makes a lot of sense. No. And then before I have to go one more quick question. Last time we talked, we talked about CGM in hospitals. I know how long but how is that program going? What is the feedback? And can you talk about how widespread it's been
Kevin Sayer 30:33
able to come? We've had interest from many, many well over 100 hospitals close to 150. And we're in quite a few of them. The interest has been great. It has taken more time for us to do this than we would have thought when we started. when everything started happening very quickly. We were getting requests from hospitals and people didn't quite know what CGM was but read about it that we literally thought 10% of our production might be going to the hospital and it hasn't been that great of a demand. We've learned the intricacies of hospital operations with respect to it and GE, we're sending you free phones fuse the sensor and you guys don't want to use them because you don't know if they're HIPAA safe. We've had to learn all these steps along the way. But where are we got it, and where it's up and running? Well, the results have been everything we'd hoped for the sensors performing the way we want it to it's accurate. We haven't seen major problems due to drug interference, which was a concern that has been an FDA concern over time, the ability of the healthcare providers to monitor from in the hallway, a finger stick administered by a healthcare professional, somebody timed it for many other days, about 15 minutes because you got to gown up, put on gloves, go stick the finger, okay, if you're doing a finger stick an hour, you're saving 15 minutes of nurse time every hour. For every patient, they don't have to stick the finger on. There's been a huge reduction in PPE.
The patients are getting off the insulin drip faster because their diabetes can under control more rapidly. are leaving the ICU faster. They're going home healthier, all the outcomes. We hope for happening, the speed of which the uptake has been slower than we would like, but it is still going on and people are still expressing interest. And I, I think based on the places where it has been, I don't think anybody's going to let it leave. Particularly while we sit and anticipate what could possibly happen in the fall, we are going to gather data. And when we can gather data and get enough data to whereby there's a meaningful submission, or at least a discussion, we'll take that and we'll discuss it with the FDA and decide what next steps would be to get the labeling and to get a hospital usage approved. I think the products always belong there. I went through an experience personally with my mom many years ago, she had a heart valve replaced and it took them longer to get and she had type two diabetes. It took them longer to get her glucose under control than it did to get her heart valve and all the other pieces of her recovery then it was fascinating. I mean, they kept coming in adjusting insulin dosage, taking it up taking it down. And I kept saying I have something we could put on her to make It's easier, and no, no. So I do think it belongs here. It's a great use for the product.
Stacey Simms 33:06
That's really interesting. Well, Kevin, thank you so much for taking some time to talk to me about this. A lot of things happening at once. And I always appreciate your time. And when you start the G7 trials, I know that we all go through the official channels, but you know, call me We'll get my son and
Kevin Sayer 33:24
hey, we appreciate I always love to come on on your show. We always have a great discussion, and I'm happy to deal with any questions that come up. You know, I don't hide.
Stacey Simms 33:33
Yeah, I appreciate that very much.
Unknown Speaker 33:40
You're listening to diabetes connections with Stacey Simms.
Stacey Simms 33:46
For information at Diabetes connections.com. As always, at the episode homepage, we do have a transcript as well if you prefer to share it that way if that's helpful for people that you know, easier to read it than to listen and just to be crystal clear, if it wasn't paying 100% choking. At the end of that interview, I could no more get into a clinical trial by talking to Kevin Sayer than I could, I don't know, get Benny a better wrestling birth by going to the NBS Linux department of his high school. I mean, I don't know about you, but that's not how it works for me. And we joke all the time being Penny never been able to get him in a clinical trial. We keep trying, I'm signed up all over the place. Maybe the word is out on what a pain in the butt I am. But I would love to get him in one of those. So we'll keep trying, but interesting information there. And I will link it all up at the episode homepage. Tell me something good in just a moment. Let's talk about baseball. But first diabetes Connections is brought to you by Dexcom. And you know, when we started using basal IQ a couple of years ago, that's the Dexcom G 610. to pump software program. I was so happy with it. And then with control IQ. It's just amazing. less work. better results with diabetes with a teenager. I mean, Benny always liked seeing his face GM numbers on the pump, right? We got that pretty much right away with tandem. But honestly, it was just more of a cool feature he really took us pump out to just look at it. There's some secret sauce, though, in first basal IQ and now control IQ, right? That just really is incredibly helpful. His range time and range has increased significantly, his agency has come down significantly, you know, I don't talk about specific numbers. Holy cow. Of course individual results may vary. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
Intel Tell me something good this week. This is a cool story that just because it's a cool story on its own, but I was alerted to this because in one of the Facebook groups I'm in, a mom posted a picture and this picture had to be at least 10 years old, maybe 1215 years old, of her son on a baseball team with another little boy both kids with type one and the other little boy was just dropped By the Milwaukee Brewers, Garrett Mitchell was selected 20th overall in last week's draft. Now, there's a lot of information here about baseball, I don't know. But I like this sentence, many heads a left handed hitter projected as going into the top 10. So the early take is the Brewers got a gym who dropped further than expected. And then they go in about like, well, his power numbers, and there are questions about this. But Wow, I'll link up one of the articles where Garrett Mitchell is quoted, and he really did talk about it. He said, You know, a lot of these teams, it did come down to diabetes, what teams want to deal with that, you know, what teams are comfortable with that? And he says, personally, I don't really see this challenge. You know, there are a lot of people who questioned him, but he says, I know how my body works. I know what I need to do. And he has been dealing with it since he was a young child. And I think it was really interesting that the story I'm reading this from isn't from a diabetes publication. It's not a profile on jdrf. There's lots of those and I hope we hear much more about Garrett Mitchell, but this is just a regular sport. story where the diabetes stuff comes way, way, way down in the article, so congratulations to him. Thank you for those of you who alerted me to this on Twitter, which is always great if you see something good like this, please tag me let me know. And of course we are efforting an interview with Garrett Mitchell because why not? I would love to talk to him. If you have Tell me something good story. If your child is starting to play sports, and I mean, forget about hitting a home run, you know if they just get through the game, and you don't run on the field. I'm kidding, but I'm not kidding. The parents know what I'm talking about. Right? If you have a Tell me something good story big or small. Let me know this is my favorite part of the show. Every week. I love sharing your stories. You could email me Stacey at Diabetes connections.com or just tag me on social media and tell me something good. Before I let you go more Ada stuff is coming. I am excited to have interviews on tap with a lot of other technology companies and we'll be sharing those in the weeks to come. There's a lot of stuff to unpack here. I also want to let you know and this is kind of selfish and I hate that these are all the same time every year but I guess this is a word season so I want to give you a heads up that the we go health and the independent podcast awards are coming up in a thankfully it's not a vote everyday situation I hate when people do that just just awful that they asked you to get your listeners to vote every single day What a pain in the ass for I'm not gonna win anything with that attitude. But I have been nominated for a we go health award on the voting for that, which is basically just please go ahead and like me on the wiegel Health site will open up in July. And I will be putting that out on social media, the independent podcast awards. We've been very lucky where some wood that I can knock. We have been named a top 10 Health podcast. That's a nationwide independent podcast award every year since the podcast launched and I love keeping that streak going. So I will be asking for your help there as well. Again, it's just a vote once please. And there's lots and lots of podcasts to vote for. Same with legal health. There's lots of categories to vote for. So if you know somebody else in the diabetes community or there's a podcast Guess that you like you'll be able to nominate and vote for them there. So more to come on that just thank you very much. I hate asking but that's the only way to do it. All right, thank you to my editor jump, you can start audio editing solutions. Thank you very much for listening. And Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Unknown Speaker 39:25
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
Transcribed by https://otter.ai
Melissa and Kevin Lee played an important role in what we know now as NightScout and the DIY movement. Their interest was initially sparked because they wanted to have children. Melissa lives with type 1 and Kevin has an engineering background. They jumped in with many other "hackers" to create what we know now as Nightscout and other DIY systems. By the way, the Lee's children are now ten and eight!
In Tell Me Something Good, wedding bells for a T1D couple – which spark some fun stories from others in the community.. and an update on a change my son made after our last episode.
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods, real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:25
This week, Melissa and Kevin Lee played an important role in what we now know is Nightscout and the DIY movement. It's kind of hard to remember but those early days very different. Melissa remembers what it was like the first time Kevin for husband followed her numbers and acknowledged what a hard day she'd had.
Melissa Lee 0:45
And I didn't realize I just looked at him and he said, this is how every day is, isn't it? And like I still get chills thinking about it. They say it was the first time that anybody outside of me or another person with diabetes looked at I said I see you. This is hard.
Stacey Simms 1:02
Melissa and Kevin were interested initially in the DIY movement because they wanted to have children. Their kids are now 10 and eight. We have a lot to talk about.
And tell me something good wedding bells for a couple who live with type one. And that sparked some fun stories from others in the community. plus an update on a change my son made after our last episode.
Welcome to another week of Diabetes Connections. I'm so glad to have you here. I'm your host Stacey Simms we educate and inspire about type 1 diabetes by sharing stories of connection. And this is a story of connection. Melissa and Kevin have so many wonderful anecdotes to share about finding the DIY community about those early exciting days about the projects they worked on. And we talked about what it's like as a married couple to go from not sharing any information. about diabetes to being some of the first people to be able to see CGM information, you know, how does that change your relationship? How do you talk about it? And we'll get to that in just a couple of minutes. It was great to talk to them.
I wanted to bring you up to speed first, though, on something that I mentioned. Well, Benny mentioned it when I spoke to him last week. So Benny is my son, if you're new, he was diagnosed right before he turned two. He is now 15 and a half. And we talked last week about changing a bit of our routine, he has been taking a long acting insulin called Tresiba for almost two years along with using an insulin pump. It's a method called untethered, I'm not going to rehash the whole thing. I've talked about it many times. But if you are new, that will link up more information in the show notes and you can go back to listen to last week or previous episodes with Benny about why we did that. bottom line he was using so much insulin because of puberty and maybe some other issues genetics who knows that it was very, very helpful to add an additional basal source that took the pressure off the pump inset, but Over the last month, his insulin use has gone way down. And that is because of three factors. He's probably coming out of puberty, he has lost a lot of weight. And we are using the control IQ system, which we noticed right away meant we were doing far fewer big corrections and we just used it so much less insulin on it.
So during the show that the last endocrinology appointment, Dr. V, had said it was fine to go off the Tresiba, no problem, do it when you want if you want, and Benny said that he did want to do that. So as I'm taping this, it's probably about eight days since we made this switch. It takes about two to three days everybody's a little different to get Tresiba out of your system. It works a little differently than some other long acting so it takes longer to get out of your system. We did have a rocky three days but we were used to that we knew that was coming and just as I had hoped control IQ the software system with the tandem pump and the Dexcom just has worked even better than it did before and I don't talk about specific numbers with my son. That's not how we Roll, but just to give you some perspective has been about 70% in range, you know, it goes up, it goes down very happy with that number. He has been 80% in range, I think 82% in range for the last seven days as an average and two days where he was like 98% in range. It's crazy. So I don't think that'll continue because that's how diabetes works. Right? Don't you find sometimes it like lulls you, when you make a switch, it always starts out great, and like a week or two later floor like the rug just pulled out from under you. So we'll see.
I want to get to Melissa and Kevin. But at the end of the show, I'm going to talk a little bit more about some changes we've made recently, in addition to Tresiba, we have changed how we use sleep mode. So stay tuned at the very end. I'm going to talk about that. But I know not everybody uses control IQ. So standby
Diabetes Connections is brought to you by Real Good Foods. It's really easy to compare and see what we love about Real Good Foods. If you put them side by side to other products, I mean their breakfast sandwiches, six grams of carbs, 18 grams of protein compared to like, you know 2636 grams of carbs in other products and a lot less protein and a lot more junk. If you look at their cauliflower crust pizza, you It's amazing. Not every cauliflower crust pizza is actually low in carbs, you know this you got to read the labels. So Real Good Foods, nine grams of carbs in there cauliflower crust pizza. Some of the other ones have 3540 grams of carbs. I know everybody eats low carb, but you know, you want to know what you're getting. You want to really be able to see, well if I'm eating a cauliflower crust pizza, you might as well eat you know, a bread crust if you want 40 carbs per serving. Real Good Foods is just that they are made with real ingredients, you know stuff you can pronounce. It's so easy to find. They have that locator on their website, it's in our grocery store. It's in our Walmart, and you can order everything online, find out more, go to Diabetes, Connections comm and click on the Real Good Foods logo.
My guests this week are part of the history of the diabetes DIY movement. longtime listeners know that I am fascinated by the we are not Waiting crowd. And I can't say enough about what they have done for our community. In fact, I'm actually trying to put together an oral history. And we've talked to a lot of people since 2015. When I started the show about this movement. The big problem is a lot of these wonderful engineering and tech types are a little spotlight adverse. You know who you are, but I'll get there. I did reach out to Kevin and Melissa, because, you know, I've talked to Melissa a few times about pregnancy and type one and other issues. I think that the show we did as a panel with other guests about pregnancy in type one and Steel Magnolias is frankly, one of the top 10 episodes, not because of me, but the guests are so amazing. And that night gets so much praise on that episode, people, you know, women pass it around. I'll link that up in the show notes.
But you know, I hadn't heard Melissa and Kevin's story, and their names always come up when we hear about the early days of the DIY builders. So our talk today is about much more than the technology it's also about marriage and kids and diabetes and sharing data. You know how that affects your life. Quick note, Kevin now works for Big Foot biomedical and Melissa works for tide pool. If those names don't mean anything to you, if you don't know what those are, or you know what they do, might be a little bit of a confusing interview. There's some presumed knowledge here, I will put some links in the show notes, you may want to go back and listen to previous episodes about the we're not waiting movement or just check out the links. Also, it is really hard to get people to acknowledge the difference they've made. These are all very modest people. God loves them, but I do try. So here's my interview with Kevin and Melissa Lee,
Melissa and Kevin, I am so excited to talk to you two together. Thanks for making time to do this. I know how busy you both are.
Melissa Lee 7:43
Thank you for having us on. This is a fun thing to get to do.
Stacey Simms 7:47
I don't know if Kevin's gonna think it's that fun. We'll see. And I say that because in the small way that I know you you don't seem like you're quite as conversational and chatty is as we Melissa, well, we'll see how it goes. Kevin, thanks for joining us and putting up with me already.
Melissa Lee 8:04
Well, you know, he actually is until you stick a microphone in front of his face. Oh, okay. You know, beyond that, yeah.
Stacey Simms 8:12
Well, let's start when when you guys started, and Melissa, I will ask you first How did you meet?
Melissa Lee 8:17
Oh, this is a story I love to tell. And Kevin's gonna already be like, why did I agree to do this? So this was like 2006 and I spent a couple of years doing internet dating. And you know, I'm very extroverted and and like a go getter. And I had just been on, like, 40 bad days, basically, on the internet. Basically, I was broke from spending money on lots of different dating sites, and I found a free one. But during that one, it turns out that this guy was on it because one, it was free. And two, he liked their matching algorithm that tells you a little bit about why you needed so we met online and then What a year and a half later, we were married. Wow. So yeah, we were married in late 2007. At the time, I was a music teacher. And Kevin, how would you describe what you did in the world?
I was working at Burlington, Northern Santa Fe, just deploying web applications as a contractor to IBM. And then in our early years, you worked for capital, one bank doing infrastructure architecture, and then later for American Airlines doing their instructor architecture. So we like to say, you know, we've been in finance he's been in travel is been in transport. He's been in lots of different fields doing that same thing that I just said infrastructure architecture, which I will not explain.
Stacey Simms 9:44
So, Kevin, when did you go from checking out the algorithm of the dating app, to noticing that perhaps the diabetes technology that your girlfriend and fiancé and wife was using, when did you notice that it really could be done better. And then you could do it
Kevin Lee 10:02
became a little bit later. And it first I kind of just let her her do her own thing. She managed it. She managed it well. And then as we started to progress, and we both wanted kids,
Melissa Lee 10:16
yes, we got back from the honeymoon and I had babies on the brain and two of my bridesmaids were pregnant. And then I have this whole, you know, in our pregnancy podcasts that we did together, I had babies on the brain, but I had this diabetes hanging over me. And I think that that was a huge motivator for both of us. So like mid 2008, my insulin pump was out of warranty.
And so that's that's whenever I really started to encourage her and I started getting involved and saying, hey, let's let's go experiment. Let's find what's what's right. Let's look at what else what other options exist and didn't find too many other options but no, we I did switch I switched insulin pump brands and we started talking about this new thing that was going to be coming to market called the CGM.
So I got my first CGM within the next year. And Kevin immediately started trying to figure out how it works. So this was the freestyle navigator. And this was like 2009. I think I was maybe already pregnant or about to be pregnant. And Kevin was trying to hack this device.
Stacey Simms 11:25
So what does that mean? When you said you started to figure it out? What did you do?
Kevin Lee 11:29
Well, it bugged me that the acceptable solution was the we had this little device that had a range of measured in the 10s of feet. That was it. And I had a commute. At the time, I was working at American Airlines and my commute was 45 miles one day daily, and she was pregnant, and I just wanted some sort of assurance that she was safe and there was no way to get that and I just wanted to be able to You know, it was obvious that this center was sending the data that I wanted on the available through an internet connection. How do I get that? Ultimately, that effort was unsuccessful. And that's when we started going to friends for life. And there, that's where we saw I guess Ed Damiano’s connected solution where there's remote monitoring, and we saw the Dexcom. And that's whenever I thought, hey, if that's an option, and so we started looking into the Dexcom and switched over.
Stacey Simms 12:39
I'm gonna jump in because I'm a little confused. When you said you said Damiano’s connected set up, I thought that he was showing off what is now called the iLet and the new the bio hormonal insulin pump. What was the Dexcom component to that that you hadn't seen before?
Kevin Lee 12:54
So it was just a simple remote monitoring, you know, he needed to be able to as part His research to be able to remotely monitor the patients that were well,
Melissa Lee 13:05
specifically, he had an early version of the bionic pancreas had a Dexcom that was cabled to a phone. Oh, and so if you look back at like, 2012 And so like he I remember Kevin holding the setup in his hand and looking at it and being like, you know, this is fascinating. Like, I have an idea.
Stacey Simms 13:30
Because at the time and I'll find a picture of it, but it was cable to a phone. And there were at least two insects from the pump. So you had to have the the CGM inset and then you had to have two pumping sets and then the phone cable for the bionic pancreas at that time. Am I thinking of the right picture?
Kevin Lee 13:45
No, I really should
see all of that.
Melissa Lee 13:49
You know, like we're so old at this point.
Like, like eight years ago now I wasn't realizing because how have my children are but this You know, I want to say that this was even before we'd have to go back and back with them.
Kevin Lee 14:05
Yeah. And that was just the moment that hey, okay, this is another alternative. And we were, we were actually looking to switch at the time because I think that's when the note and I switched.
Melissa Lee 14:17
Okay, we had to switch because navigator went off the market in 2011. So this is right around the time, we just switch to that.
Unknown Speaker 14:24
So what did you do with the Dexcom ,
Kevin Lee 14:26
whenever we noticed that there was a little port that was also used for, for charging and for data, I connected to it and started reverse engineering it sending data and seeing what we got back and trying to get that data off. It was first connected to my little Mac MacBook Pro. And I just had a goal over Thanksgiving to be able to get that data out of the CGM. And it took three or four days and I was able to get basic data out of the system. In premiere, it was just as simple as uploading it, and then visualizing it.
Stacey Simms 15:06
So for perspective, and I want to be careful here because I know there were a lot of people working on a lot of different things. I'll be honest with you. I'm not looking for who was first or when did that happen? Exactly. But just for perspective, is this basically the same thing that we then saw, like john Costik, put up on Twitter when he said he got it like on the laptop? Or, like, what would we have seen if we had been sitting in your house that day?
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Now back to Kevin answering my question about what does it look like when he figured out how to reverse engineering the free the Dexcom data.
Kevin Lee 16:30
Absolutely that we would you would have seen a little text flying by saying this is the the glucose number. Yeah, on the on the computer. It wouldn't have been very exciting to most. And from there, Melissa tweeted out saying hey, we have the data available from our Mac and I guess that's where Joyce Lee picked up on it and wanted some more information.
Stacey Simms 16:55
All right. So Melissa, take it from there.
Melissa Lee 16:56
Yeah, you know, Joyce has been a real champion as those early days. Why date and so I remember her reaching out to me and saying this is this is really interesting. I want to know more. And in this was the same year that Dana and Scott were bringing their thing to life with what was then DIY APS. This is around the same time, same era in history that, that john Costik was doing his great stuff and with Lane Desborough and the early days of Nightscout, so all of these things were happening in these little pockets, and we were just another little pocket at the time. One of the things that concerned us was whether we were doing something that was going to be shut down really quickly, like there's something that you find knowingly or unknowingly, it's kind of like when you agree to the terms on iTunes.
So when you use these devices, there's something called an EULA and End User License Agreement. And these eu la say, you're not going to reverse engineer this product. And so we were a little cautious about what we wanted to diseminate in terms of like your take this and run with it, but that culture was still developing. And so at the end of that year was the big d-data event at the diabetes mine summit, where there were a few really key DIY influencers sort of in the room. This is where Lane first coined the we are not waiting and, and the next day I was at that summit, and I was hearing Howard Look speak about what had happened at the d-data summit the day before. And I was like, Oh, my God, Kevin has to plug into this. So we want to help this initiative. Like we want to be a part of this. We have so much to offer we this whole remote monitoring setup that he had built for me. And at the time, like by then I think one of the biggest things we have done is Kevin has developed do you want to talk about glass.
Kevin Lee 18:51
Yeah, it was just a another way to visualize the data. So Google Glass, I don't know if you remember that. It was a kind of a connection eyeglass. Yeah, in some ways, it was ahead of its time in other ways. It was just a really interesting idea. I got a pair, and I was able to have it alert me when she crossed the simple threshold. And I was able to see historically three hours or 12 hours or whatever it was without having to pull up a web page. It was just kind of always there and on available for me if and when I needed it. So it was just kind of an ambient thing in the background that I didn't feel like a I had to worry about.
Stacey Simms 19:38
Interesting. Kevin, I'm curious in those early days, so if I could just jump in. You know, you you don't have type one. You care very much about someone with type one and you're doing this because you care about her and want to make sure she's safe. When you started meeting other people who were doing the same thing. What was that like for you? I know it's chancy to ask an engineer about how they feel but it had to have been nice to get kinship with these other people who basically spoke your language and also understood the importance behind what was going on.
Kevin Lee 20:07
Yeah, so that was actually really kind of interesting whenever we first started sharing that we wanted to share it just with a small group of people. And I think it was Manny Hernandez that introduced me directly to Wayne and Howard and a few other Brian Maslisch.
Melissa Lee 20:28
yeah, so I like to tell the story that I chased Howard Look down in the hallway after that, and was like, you have to connect with my husband. And then that didn't seem to work. So that's when Manny was like Manny Hernandez, who was the founder of Diabetes Hands Foundation. He is a good friend of ours and he was like, No, I have to connect you to these guys.
Kevin Lee 21:15
And so there's this pivotal email thread from January of 2014, where we started exchanging The well, here's the project that I've done and Lane says, Well, here's a project that that we've been working on and we call it Nightscout. And so we, we kind of exchange notes. And then it was a little bit later that Lane, well, maybe not lane. Exactly. But that's when the the whole CGM in the cloud and the Nightscout. Early foundations started to show up on on Facebook.
I think that's whenever another engineer had published the code on GitHub, and started to set appears. Here's how you set it up. Well, there weren't many in my situation, you know, one of the engineers was a parent. And I think we actually made a really great mix. And I think that that's part of what made the successful so one of the engineers working on the project was A father of a type one I represented the spouse and some of the other engineers were personally affected by by type one, and definitely added a different level increase the camaraderie between us. Those are early days we were were on the phone almost nightly. As soon as I get off my my day job, I'd go home and work on the evening job of trying to get the next set of features out or to fix some new fixes. I love to describe this day because throughout 2014 he would walk in the door and he was already on the phone with the other devs from night out. And if I walked in the room where he was working on the computer, I would be like, Hey, Kevin, and then I'd be like, hey, Ross Hey Jason, because I assumed that they were on the phone. Hey, Ben.
Melissa Lee 22:56
Like it was staying up all night long. They didn't sleep. They did this all day long. Kevin talk a little bit about the pieces you brought in tonight that from our system that we created, and then we like I, I have two producing diabetes data. I'm not gonna, I'm not gonna claim a lot of that. But I was just plugged into it. If people are familiar today with Nightscout, which many listeners may be like, what piece did they hold in their hands? That was yours.
Kevin Lee 23:26
So the the piece that I was so connected with was the what we refer to as the uploader. It was just a piece of extracted the data from the CGM and then uploaded it to the Nightscout website. The early days. I don't know if you remember it was the little 3d printed case with a phone that you got that happened to have a data plan and a wire connected to the the CGM. Right whenever Nightscout first came out, I was I was hesitant to start I mean, this was like the first few months I was hesitant to contribute. I wanted to see What I could do, but as it started to pick up be there, it was obvious that the pace of development that I was doing on my own was not going to equal what the rest of the community could be doing. But then he and I had these other features, which I'll go into in a moment here that I felt the community could benefit from.
So we started having early conversations with Ben and others. How do we fold in functionality that I had into the current uploader, that functionality was essentially the early ability to follow on a native phone app, it was decreasing the size of the packet and uploading more so using less data. It was an Android watch, being able to get the latest data on an Android watch. It was used in camping mode. I don't know if you're familiar with that. But the early days of knights count we had the pebbles that We're kind of Bluetooth connected smartwatch, that use the little EEG displays. Those required you to be connected to the internet. And one of the devs Jason Calabrese had said, I'm going camping next week. And I'm not going to have internet connectivity. And I sure wish that that I could. So I thought about it for a minute. And were able to quickly reconfigure it the existing code to be able to get that data on the watch without an internet connection. So
Stacey Simms 25:32
camping mode literally came from a camping trip. Yes.
Kevin Lee 25:37
Jason Calibrese’s says camping trip.
Melissa Lee 25:40
So well, and then the code that became xdrip which like thousands of people use today.
Kevin Lee 25:46
So that's, that's a great thing about open source community, whatever ideas reverberating off of each other and become more pronounced and it essentially becomes the sum is greater than the whole.
Unknown Speaker 25:59
Let me ask about xdrip, though, was it originally called Dexdrip? was that one of the first times Dexcom got involved and said No thank you, or did I miss remember that,
Melissa Lee 26:10
that was all part of Emma Black’s history. Emma took the code that Kevin and created and, and created built on top of that to create Dexdrip. And Dexcom did say you can't use our name and became accept yeah that you're remembering correctly. It was a very friendly discussion. And so it was renamed to xdrip.
But you bring up an important point about how industry was reacting to all of us in late 2014. The team at Medtronic actually invited many of the community members who were working on that into sort of the belly of the beast, and to come in and talk to them about the why and the challenges and the what could industry do and and What are we not hearing and just sort of like a meeting of the minds. But what was so cool about this is this is the first time that many of us had met one another in person. So here, people have been working on this for a year or two. And now suddenly, it's a table with Dana Lewis and Scott Lybrand with john Costik with Ben west with me with Kevin, with Jason Calabrese, like we're sitting around a table for the first time and talking with industry as this United Community. So it felt a little less, to me, at least as someone who's been really involved in fostering community, right? It felt to me like there's the start of something here. And that was a really exciting meeting. We like to joke that nothing came of it. I was gonna ask about that. But to me like that was exciting. It was this energy of like, we all came to the table and said like, these are the needs of the community. This is why we need remote monitoring. And this is what we're gonna do next. And you can either help us or understand we'll do it anyway. And so that was that we are not waiting spirit.
Stacey Simms 28:08
Well, and that was a very pivotal time. And, Melissa, let me just continue with that thought if I could, it was such a pivotal time, because you all could have said, we are not going to continue without you. Right? We need this. But it seemed to me and again, it's hard to for me, you know, it's funny that it's so long ago now. But it's only four. It's like, it's only five or six years ago, really? The seeds of that community. And you can see it just in the Facebook group with CGM in the cloud and everything else. There's 10s of thousands of people now who are part of this community. You know, did you saw the seeds if it Then did you ever imagine it was gonna get as big as it is now?
Unknown Speaker 28:48
Is it crazy to say yeah?
Kevin Lee 28:54
to directly answer the question. Yes. And that's where we were actually Faced with a another really tough decision of how do we continue to solve these problems? And we started to see the scalability problem that what we viewed as a scalability problem within the community. How do we continue to support it? And how do we deliver this safely to masses? It was a choice that we had to make of if we're doing the industry and we, we try to do it this way. I don't know there, there isn't really one right or wrong way to do it, but it was just a another way. And we believe that by joining the industry that we could deliver something simple, easy, and we could make it scalable and supportable for the masses.
Melissa Lee 29:44
I think those things like those meetings with Medtronic or, or Dexcom, early on. I mean, I remember sitting in Kevin Sayers office at Dexcom and I was there for a completely other reason. I was there on behalf of Diabetes Hands Foundation said and I just like went off about night prayer. But those conversations gave us a really like I want to recognize my privilege in that to be able to be in a position to go sit with leadership at these big diabetes device companies. But let us see that there was a way to bring the change we were doing outside. I don't want to use the word infiltrate because that sounds
to infuse what industry was trying to do with community perspective and patient perspective and and the change that we knew was possible. And that resulted in both of us for huge career changes.
Stacey Simms 30:43
And we will get to that for sure. Because it's fascinating when you mentioned and you know, we're doing a lot of name dropping here. And if you're if you're new to this and you've listened this far, I promise. I will be putting a lot of notes on the episode homepage and you can go back and listen to other episodes, but there's a lot of names that have Gone By. And a lot of names that you mentioned are people who either founded or were instrumental in the founding of newer independent companies that came out of at least as I see it, this DIY wave that happened in the mid 2010, that you all are talking about. And now you both, you know, you work with these companies and for these companies, but I want to continue this the scalability, as you mentioned, because it's remarkable that even as all those companies, I mean, Big Foot tide pool, you know, even as these companies came out of this, you're still servicing all these, and I'll call us lay people. I mean, I, you know, most of the people who were early adopters of Nightscout or things like that seem to have some kind of engineering background or something that helps software makes sense. But then the floodgates opened, and it was just easy for people or easier than it seemed for people to do that. Kevin, was there a point that you kind of remember looking at this and thinking, you don't have to be an engineer.
Kevin Lee 31:59
That's actually part of the reason why I continue to contribute with Nightscout and in the early days, we decided we were going to go ahead and launch on the Play Store. So we set up an account. And you know, instead of having to go out download the source code, compile it, we distributed it is via the channel that users were used to receiving their their app from. Another thing that we introduced was the barcode scanning. So what we found out was set up of the app was a little more complex than it needed to be. And so we introduced the the concept of barcode scanning to set that up,
Melissa Lee 32:42
which now exists in the commercial like every time you start a new transmitter on a Dexcom system today, you scan a barcode on the side of the box. Kevin did that. I remember, I'm not claiming but next time did not develop that on their own. I am just claiming Hey, we.. yes.
Unknown Speaker 32:59
Stacey Simms 33:02
Yeah, that's wild. I did. Yeah, I was thinking about that. Because now that's, of course, that's how we do it. And Melissa, I know I'm kind of jumping around here, but I have so many questions. I wanted to ask you earlier. What was it like for you? At this time? You said, Well, I just provided the data. I mean, what was it like for you during this time other than, you know, just popping in and saying, Hey, honey, how were the phone calls going? It had just been exciting and a little nerve racking for you. What was it like,
Melissa Lee 33:30
by my count, and again, Not that it matters? I think I was the first spouse to be followed.
Sounds creepy, doesn't it? I was the first CGM stocks 4000. Now, um, but one of the things, it did a few things for me, and I'll never forget one day I was in the kitchen and I've got babies and toddler and lay like it had just been a day right when you're a young mom, and you've got Little ones and it has just been a day and Kevin walks in and he said, and you've had a really hard day and I just looked at him like, Are you an idiot? Yes.
And I was like, What are you talking about? And he was like your numbers. Oh, and I just looked at him and I didn't realize I just looked at him and he said, this is how every day is, isn't it? And like I still get chills thinking about it Stacey I like it was the first time that anybody outside of me or another person with diabetes looked at me and said, I see you this is hard. And I didn't even know like I probably said yes, you idiot I've had a hard day
Unknown Speaker 34:46
I doubt it.
Kevin Lee 34:48
I had worked on some some code to make Nightscout available via personal assistance. Think the Alexa and Google Home and, and other things. And while I was experimenting and testing it, it became very clear that I was not allowed to ask what what those values were.
Melissa Lee 35:14
He was like, it’ll will be so handy. And if you're in the middle of cooking and you've got like, you know, stuff on your hands, you can just ask it. But like, what you don't do is you know, your wife snaps at you. And you say, Alexa, what's her blood sugar right now? Like, that is not what you do. So now the story I was going to tell Oh, Stacey, you're gonna love this one. So this is like early 2015. And I am the Interim Executive of a nonprofit and I'm representing patients at this endocrinologist a meeting, and I'm alone in a hotel, and I had been out with all these endocrinologists and we've had tacos at a bar and I have no idea what my glucose was, but I had calibrated my CGM with probably tacos all over my hands. I go to bed. Well, this poor man, I'm in Nashville. He's in Dallas. This poor man is getting
Kevin Lee 36:09
the blood sugar was reading his 39. Yes, for those who don't know, is the world. The CGM can read anything below that he registered
Melissa Lee 36:19
as low. I have my phone on silent because I've been out with all these professionals. So he had called me 18 times. It didn't go through Sunday night disturb so far in two hours reading, like a 39. So hotel security burst into my room. Mrs. Lee, Mrs. Lee, are you okay? Do we need to call an ambulance, this string of expletives that came out of my mouth? I will not repeat on this good family show. But I was so mad and you know, I'm calling him and I'm like, I'm like 130 right now. Fine. by that same token, I have lots of like really lovely stories where You know, I'm alone in a hotel in New Jersey, and he wakes me up in the middle of the night to say, you know, wake up and eat something, honey. So, yes, there is a good story, but I must prefer the story where he had security break into my room. Oh, my God over over what nights? That was it.
So, you know, but to your question, we really were on the very bleeding edge of understanding things that you actually already deal with, with your son today and that people deal with today in terms of how will we actually establish boundaries on how much of my data you get to react to and for all the times that it is a benefit? Where are the times where it's like, no, I actually have to cut you off. We're now like seven years into him following my data. And so in some ways, I think we both see where people will get to when following data is the norm you know, should it ever scale by Live in terms of now, he doesn't look at my data all the time. Now he knows when to respond when it weren't so good. But it made me feel understood. It also made me feel a lot safer to know that just have somebody else watching my own back. I'll be celebrating 30 years with type one this year and celebrating is, you know, you've been
away there. But like to know that like somebody else is just there to pick up a little bit of slack you have for someone like where you are, it can be hard because I know when teams don't always appreciate or show their appreciation in the same way. But there is an appreciation for the fact that that you're there to pick up a little bit of slack just as much as there is resentment and issues with boundaries. And in times when they really need to just shut your assets off. And so I feel like we're just a little bit further down that road in some ways, you know, we'll let you know when we have it all figured out. But Exactly.
And what's right for us as a couple is not necessarily going to be right. For every couple, you know, there are couples that really feel like, no, my data is mine. And I don't trust you not to react to it in a way that's going to make diabetes any harder for me. And I think that that's what we 100% have, that I'm very fortunate to have is that I trust Kevin, to react to my data, the way that I'm comfortable with him reacting to my data.
Stacey Simms 39:33
So both of you, through this process wound up not only having two kids, but you made big job changes. And you now both work in the diabetes sphere. And I hope you don't mind I'd really like to talk about that a little bit. Because I mean, you mentioned the beginning. Listen, you're a music teacher. And you're right, your background, your music professional. You are Bigfoot for a couple years and now you are a tight pool and you're basically I'm going to get a But you're helping tide pool so that they can better train people and kind of explain to healthcare professionals and the public to kind of I look at that as translating, is that sort of what you're doing there?
Melissa Lee 40:12
Yes or no. So for instance, I know your family has just started with a new piece of diabetes technology. There were certain training modules that were there to support you. There's certain learning materials that were provided to your child's doctor so that they understood what they were prescribing. There's a user guide that comes with the stuff that you use in your family today, if you're buying things from companies off the shelf, and what the DIY community when we're talking about scalability, and how important that is to each of us having a knee accessibility, scalability availability like these important, how do we bring this to people in a way that they will actually be able to access tide pool announced about a year ago that they were going to take one of the DIY, automated insulin dosing systems and actually bring it through FDA review. Part of that is it has to have the kind of onboarding and support materials that your insulin pump he buys a medical pump and has today. So I am leading the development of all of those materials for both the clinics and the doctors, as well as for the end user to learn the system.
Stacey Simms 41:30
And Kevin, you're still a big foot. So you're a principal engineer there. What excites you about what you're doing there? Is it again about the accessibility because I know you know, Bigfoot is not yet to market but people are very excited about it.
Kevin Lee 41:41
Yeah. Accessibility is one of the large parts and reliability going through the DIY stuff. It's happening at an incredible pace change is happening there and things break things don't always go the way that you intended. There has to be balance there somewhere? Well, you have to have services. I mean, look at what happened recently with server outages and different companies, you have to be prepared for how am I going to support this time, I'm going to keep it running, you know, whatever the it is, it's that the reliability, we're all we're all human, that's humans behind the scenes, making the the changes and improvements that we rely on. So how do we do that safely and effectively as possible to minimize the impact and continue to increase the value to the user?
Stacey Simms 42:37
This might be a very dumb question. But Kevin, let me ask you, Melissa mentioned the the new software that we're using, and she's talking about control IQ from tandem, which is the software that we've got now. And there are other commercial quote solutions. There's other commercial systems coming out when you look back at all the stuff that the DIY community did, and is continuing to do. Do you feel like you guys really, really pushed it along? I mean, I gotta tell you and I know nothing. And I never even used Nightscout and people laugh at me. But I think we would never be close to where we are commercially. Does that add up to you?
Kevin Lee 43:12
Yeah, it adds up. It's not for everyone. You know, it is bleeding edge, the community, in a lot of ways drives industry.
Stacey Simms 43:21
You I'm not asking you to say specifically without this wouldn't have that. But it just seems to me that we would have gotten there eventually. But I don't know that the people behind Knight Scott and so much of the other things you've mentioned, really either got into industry and help push things along or helps with the FDA. You know, is it as kind of an outsider on this. Can you speak to whether that's true?
Kevin Lee 43:44
Yeah, absolutely. I think that it had you I mean, that's the nature of competition. There was an unmet need in the community and the unmet need was was fulfilled.
Melissa Lee 43:55
Well, what I would say is industry needs to see that something viability as an idea and so, I firmly believe that many of these things were floating around in companies as potential developments in the pipeline. What the community did with our DIY efforts is say, we are so desperate to this thing, we will just build it ourselves if you can't deliver. And so I think it helps prioritize like I've seen almost every company in the industry actually skip over other things that were in their pipeline to get to these things and reprioritize their own product roadmap to try to deliver. And I don't think it's, I it's not in a Oh, we better get this or the community is going to do it themselves way. It's a, okay, this is a real need, and we should, we should focus our resources on this. A lot of ways it's a playground for industry to concepts, live and die much more quickly in the DIY community than they do and it allows you to to iterate faster and find out what does and doesn't work, open source communities have existed outside of diabetes, obviously, it's a and throughout the last few decades, we've seen what happens in the open source world actually drive change in the industries to which they're associated. And so I think there are analogies to this in terms of like, what happens in the software industry, with personal computing with consumer electronics, so I don't, I don't find it at all odd or ridiculous to say that the DIY community and diabetes has actually resulted in change within industry. I mean, if only if, like you pointed out so many of those names, but we, you know, we're dropping them because we want to see people recognized for their extraordinary contributions, right. But all of those people, many of them have gone on to found companies, invent new things, join other companies. What's your Modeling about open source communities, regardless of field or genre or whatever is that you see that you see new people roll in with new ideas and lay new work on the foundations of code that were left behind and innovate and continue to innovate. And so we will see the DIY community around forever, they will continue to innovate. And we will also see many of those innovators move on into the industries in which they're working. This is a personal choice that they have to make them they'll go through the same decisions that we did. And not everybody. Well, I mean, Dana lewis is not associated with the company. We're not saying that that's an inevitability, right? But it's pretty common. You have to be pretty geeky probably to know of other open source communities. And I'm, you know, Kevin is way more well versed to speak about that, but in the way of fan
Stacey Simms 46:56
before I let you go, this all started because you wanted have kids, right? This this is the timeline that you set out from your weight the beginning here, and your kids now they're both in grade school, your daughter's 10, your son is eight. I'm curious, do they know their part in this story? Because it's not an exaggeration to say, and I'll say for you, it's not an exaggeration to say that you wanting to have kids sparked action in Kevin, that, frankly, has helped thousands of people. I know you didn't do it alone. I know. I know. I know. But your kids know the part that they played
Melissa Lee 47:31
to a degree like they know that we help people with diabetes. And they take that really seriously. As a matter of fact, when I was changing roles from my role at Bigfoot to my role at tide pool, my daughter's first question was like, but you'll still be helping people with diabetes, like will Bigfoot still be able to help people with diabetes like yes, it's all it's all good. We're all good. We're all still helping people with diabetes
and they've grown up with these things in the sense that we love to tell the story of when our son was about three years old and he would hear the Nightscout song that would was basically the alert that would play. And he knew that when I was low, there was a bag of sour ball candy on the top shelf of the pantry that came down. So he would hear that sound that Nightscout song and that song was sour balls to him and he was “sour balls sour balls!” he was all in or maybe like two I mean, he was little It was too and so like it became the sour balls song, right? You know, the other day he heard the Nightscout will song play and he said mom who undid that song and I posted something to Facebook. Well basically lane desborough and better that song or found it. I wrote something about like I just set my son down. I said, let me tell you the story of our people and how we came to the valley of silicon you know, which is of course not the way I said it to an eight year old but as you know amusing myself But essentially, you know, there is some of these folks that they literally do talk about uncle lane and Uncle Manny and Uncle Ben and like my daughter thinks she has a lot of uncles. But, you know, so they know that we've helped a great many people. And as they as they get older, and we can sort of expound on that, then I think, well, let's be honest, they won't care.
For a while, right? teenagers will be like we shut up about, oh, they'll care.
Unknown Speaker 49:30
They just want to know they care.
Melissa Lee 49:34
Someday, they'll appreciate it, and a different way, but that's what they know. Now,
Stacey Simms 49:40
Kevin, you also said this was about your commute, making sure Melissa was safe. Knowing that Melissa is a very strong and independent woman. Do you feel like she's safe? Did that check that box for you all this hard work?
Kevin Lee 49:53
Yeah, absolutely. This is kind of something that she went into earlier, but I really view the monitor. That I've done and the work that I've done is really just augmenting and trying to simplify and make her life easier. We first started dating, I actually told her that you will never find somebody work harder at being lazy than than me. And, you know, that was just the testament of I wanted to automate all the things that are just repetitive and predictable and easily managed to try to get that out of the way. And that comes from the background of operations and managing online sites. Being able to automate those those aspects have helped me feel like it's more safe. And then you know, other times like with with monitoring, it's great to be able to just see that you know, she's about to go out for a walk and then I happened to look over at Nightscout see how much insulin she has on board and where she is and say, you might want to run a temp basal. So it's just there. To try to augment and help her navigate it. And so yeah, it does give me a sense that she's safer because of this.
Yeah, that's right. I got really mad at him the other day, he was right. I was like, whatever. And I left the house and I went massively low. I was walking the kids to school. I was like, Yeah, well, fine. So you know, there's that two parents completely unfamiliar to you. And
Stacey Simms 51:21
it sounds more like my marriage actually diabetes or not. That's just a component of marriage. Yeah, she was right again. Oh, oh, well, you know, thank you so much for spending so much time with me. I love your story. I just think that there are just amazing people that I hate have diabetes. But I'm glad if you had to that you've done so much for so many others who have it as well. And I really appreciate you spending some time to tell us these things from years ago now because they're really are important as we move forward. So thanks for being with me.
Melissa Lee 51:56
Thank you so much for being interested in the story and for help. Others here are cranky, Stan.
Unknown Speaker 52:08
You're listening to diabetes connections with Stacey Simms.
Stacey Simms 52:14
Much More information at Diabetes connections.com you can always click on the episode page and find out more transcript is there as well. I just adore them. I know the interview went longer than usual, but I couldn't help myself. And as I said in Episode 300, when I looked back on 300 episodes, Melissa really helped change my place in the diabetes community by inviting me to speak at master lab in 2015. That really did change how I felt about where I want it to be helped me find and focus my voice. I really can't overstate that enough. So thanks Melissa, for doing that.
And again, lots of information went by very quickly let them name dropping there in a good way. And I promise I will keep on the Nightscout crew. I may ask some of you as you listen to lean on your friends, I'm not going to mention any names here. But people that I have reached out to, and they're the usual suspects. If you search, we are not waiting, or Nightscout on the website, you'll see some big omissions. So I'll talk more about that on social media, we'll get them as a community. Maybe it's just me, you know, who's fascinated by this. But I do think it's a very important part of our history that we need to document because in a few more years, many of the solutions that people like Kevin were working on are going to be all commercial and all FDA approved. And isn't that wonderful, but I don't want to forget what happened. And I think it'll be great to look back.
Okay, enough about that. I got Tell me something good coming up in just a moment. And then stay tuned. Later, I'm going to tell you another change we made to how we use control IQ with Benny, but first diabetes Connections is brought to you by Dexcom. And it is really hard to think of something that has changed our diabetes management as much as the Dexcom share and follow apps. I mean, what really amazed me we started it when Benny was about nine years old, the decks calm and we got shareable. little less than two years later, and the most immediate change was how it helped us talk less about diabetes. And boy did that come just in time for us because that's the wonderful thing about share and follow as a caregiver, parent, spouse, whatever, you can help the person with diabetes managed in the way that works for your individual situation, and going into those tween and teen years. It sounds counterintuitive, but being able to talk about diabetes less what's your number? Did you check what's your number? You know, so helpful. Internet connectivity is required to access Dexcom follow separate follow app required learn more, go to Diabetes connections.com and click on the Dexcom logo.
I am cheating a little bit this week for Tell me something good because while I usually read you listener submissions, I saw this on beyond type ones Facebook page, and I just had to share they did a whole post about people with type one getting married and they wanted Hear the wedding stories. So they started out with a a big Congrats, by the way to Kelsey, her husband Derek, and this adorable picture of them. They're both low at their wedding and they're sipping some juice boxes. And Kelsey is part of the beyond type one Leadership Council. So congratulations to you both. It's a really adorable picture. I'm gonna link up the whole Facebook thread because people share stories like you know, I had my pump tucked into my bra and I didn't think I needed during the wedding or I was a bridesmaid and I had it there and I had to reach in, um, you know, other people who went low trying on wedding dresses. I mean, I remember this. So this person writes, I went low in David's bridal trying on wedding dresses. It's a lot more physical than you think getting in and out of dresses and slips, hot lights and just emotions. My mom had to run across the street and grab a Snickers. I was standing in the doorway of the fitting room and inhaling a Snickers, praying I didn't get any on the clothes, which just added an extra level of stress. I remember a Polish ties into the employee helping me and he was like I don't even worry about it. And he stayed with me to make sure I was okay. Another woman writes my mom came up to me right before we were set to walk into the reception. She told me she had hidden a juice under our sweetheart table in case I went low. I've been diabetic 30 years and my mom still carry snacks for me in her purse. Sure enough, right after dinner, I ended up needing it. And the last one here, being excited, nervous and unable to sit still. I did a long and intense bike ride prior to my evening wedding. Luckily we had a chocolate fountain at our reception and I spent a large chunk of the night at or near it, and this goes on and on. So what a wonderful thread congratulations to everybody who is talking about their weddings and their their wonderful stories of support. And the humor that's on display here is amazing. So I will link that up. You can go and read there's there's dozens of comments.
If you've got a story like this Hey, that's what Tell me something good is for send me your your stories, your milestones, your diversities, your good stuff, you know anything from the healthcare heroes in our community. With cute who put his first inset in to a person celebrating 70 years with type one I post on social media just look for those threads. Or you can always email me Stacey at Diabetes connections.com.
Before I let you go, I had promised to share the other change we made to control IQ. In addition to eliminating the long acting basal that we had used, you know, untethered for almost two years, we decided recently to completely turn off sleep mode. I know a lot of you enjoy sleep mode 24 seven, as we said back in our episode, gosh, in late December, when control IQ was approved in the studies, they called you folks sleeping beauties, because you enjoy that 24 seven sleep mode. But I found that since school has ended, and we're trying to figure out what to do with Benny for the summer, there is nothing really that's keeping him on a regular sleep schedule, and it's gotten to the point where he is now so nocturnal, and I'm hearing this about a lot of my friends with teenagers. Maybe I sound like a tear. Parents go to bed at like four or five, six o'clock in the morning. I walked into his room at eight o'clock in the morning the other day, I wanted to ask him a question. I was like, I gotta wake him up and he was awake can come to sleep yet. You know, it boggles my mind. It's all topsy turvy. And we'll get back into a routine at some point, but I'm not really willing to make a big fuss about it. He's key is keeping busy overnight. I guess his friends are up, I don't know.
But anyway, the point is, he's eating it really weird hours. And when he was in sleep mode, we noticed that it wasn't helping as much right because it doesn't bolus you in sleep mode. It only adjusts Faisal. So if you under bolus for his you know, Pad Thai at two in the morning, it wasn't helping out and true story. I asked him about that. Like, what's this line? And what happened overnight here, were you sleeping He's like, No, I was in the kitchen eating leftover Thai food.
So we decided that his numbers during the the quote, day when he was sleeping, we're hovering right around 90, maybe a 110. I mean, it was very in range, right? No need to mess with that. So I didn't think we needed to add sleep mode. And I did want to predict when he would actually be sleeping. So we just turned it off. And that has made a big difference too.
So I guess the bottom line is figure out what works for you for your individual situation, the weirdo wacko situation, if it's us, but you know, use this technology to benefit you, whatever way that is, if it's sleep mode right now, 24 seven, if it's no sleep mode, it's exercise mood all the time. And it'll be so fascinating to see. And this ties back into the DIY movement, right? It'll be great to see the flexibility that we will get in the next couple of years because, you know, Medtronic had a tie a higher target range, because they were first with the hybrid closed loop. tandem has a lower one Omni pod, we'll have a more flexible target, you can set your own target when they come out with horizon and of course, tandem and everybody else is going to be moving to that direction as well. And it just keeps getting better.
But it gets better because people like Melissa and Kevin Lee pushed and pushed and without these folks, and there's so many of them, of course, right who said we can do it better, we would not be where we are. I truly believe that technology companies would be five or six years behind and if you're new To the show new to the community and you're excited about, you know, control IQ or horizon or whatever you're using. Or maybe you're using, you know, loop off label with Omni pod, I would urge you to go back and check out our earlier episodes from 2015 and 2016. And learn about the really early days of the community, obviously, by 2015. We're talking about things that happened in the early 2000s. You know, I don't want you to misunderstand that. That happened in 2015. But you know what I mean,
okay, obligatory book commercial. And if you've listened this long, you maybe you own a copy of the world's worst diabetes mom, if you own it and love it, do me a favor post about it. The best way to word of mouth about the podcast and the book is always if you could tell a friend post in a diabetes group post on your own Facebook page, you know, I love this book. It's on Amazon, highly recommend it. If you've read it, and you don't like it. Forget that, you know, you know, just recycle the book. It's thanks as always, to my editor, john Buchanan's 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.
Unknown Speaker 1:01:09
Diabetes Connections is a production of Stacey Simms media.
Unknown Speaker 1:01:13
All rights reserved. All wrongs avenged
If you're feeling extraordinary stress because of events in the news, you're not alone. This week, Stacey talks to Dr. Mark Heyman about simple things people with diabetes can do to manage better (and give themselves a break). Dr. Heyman is a diabetes psychologist and the Founder and Director of the Center for Diabetes and Mental Health. He was diagnosed with type 1 while in college.
In Tell Me Something Good – parents going an extra mile to make their kids feel included and a big challenge ends but we'll talk about "T1D 24/7"
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
More information on mental health and diabetes:
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Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:22
This week, let's talk about stress. And let's talk about the not so great effect it can have on diabetes. Now you're in a cycle of not just physical issues, but emotional ones, including guilt.
Mark Heyman 0:35
The guilt comes from I think a lot of times people feeling different or still don't. They're all alone, and that everybody else with diabetes is doing great. And I'm the one who is having trouble.
Stacey Simms 0:46
Dr. Mark Kaman is a diabetes psychologist and founder of director of the Center for diabetes and mental health he was diagnosed with type one in college, we're going to talk about some simple things we can try to do to manage the stress that these days Seems to be unrelenting in Tell me something good parents going an extra mile to make their kids feel included and a big challenge ends
Welcome to another week of the show. I’m your host, Stacey Simms, really glad to have you along. If you are new, 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 to he is now 15. 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.
This is not the show that I thought I would be doing this week like many podcasters I have an editorial calendar I don't always stick to it, obviously. But I have things planned out and I have interviews that are you know in the can waiting to be aired, but I thought this was a really good Subject to talk about right now. Because as I just said, I don't live with diabetes, but boy, we are all living with stress. And I thought, what are some things we can do to figure out how to better live with diabetes or with you know, whatever your health issues might be, everybody has something, I have my own autoimmune disease, how can we just take care of ourselves in a time where this news, as I said, just seems to be unrelenting?
So I put in post in a Facebook group Diabetes Connections of the group, which I hope you're in, by the way, if you're not, please join it. You know, I was really worried about her everybody was holding up. And so we talked about self care. And we had a really nice thread of comments. Of course, that's still there in the group. If you haven't seen it yet, take a look at your own, maybe get some advice from it. But I also I decided to call in the experts, and I very much appreciate Dr. Heyman jumping on with me. We hadn't talked before. He was more than willing, and I'm sure we'll have him back on again, and I'll get to his interview in just a minute.
But first Diabetes Connections is brought to you by One Drop and One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes. For people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, it's compact, it seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit. Your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more.
My guest this week is Dr. Mark Heyman. He is a diabetes psychologist and a CDE and the founder and director of the Center for diabetes and mental health Mark was diagnosed in college right before I mean immediately to weeks before he had a long planned trip to Paris, and he talks about that we get to that at the end of the interview, and I asked him a little bit about his diagnosis story. But I wanted to talk to mark about how we can handle the mental load that has just been relentless all of this year, I'll come back at the end of the interview and just tell you a little bit more about how I've been handling things I've done some things I think are good. And some things I know haven't really been helping, but we'll talk about that after the interview. Here's my talk with Dr. Mark Heyman.
Dr. Heyman, thank you so much for joining me. I'm so eager to hear what you have to say. And I know you're busy. So thanks for jumping on.
Mark Heyman 4:37
Thanks for having me, Stacey. Appreciate it. How are you doing?
Stacey Simms 4:41
I know, that probably wasn't the first question you expected as the psychologist but, you know,
Mark Heyman 4:45
how are you doing these days? You know, I'm hanging in there. It's you know, I think that it's a strange time to be a psychologist as well as to just be someone living in this world. You know, we're, you know, we're all kind of trying to process the news on a daily basis. And, you know, I have A 16 month old middle daughter, so trying to take care of her and juggle my work and childcare and kind of all of the stress there. So I think overall, I'm doing pretty well, but definitely am feeling the stress and stress of what's going on with COVID. And with the rise and with the the unrest that's happening right now. So thank you for asking,
Stacey Simms 5:20
Oh, my goodness. Well, it is, as you say, it's such an extraordinary time. And there's really no words left anymore. It's such a cliche, right? We all get those emails in these challenging times in these extraordinary times. But as you said, we've had this COVID situation for months now. It's sort of built on low boil, and I think we kind of learned to live with it in the background. And then of course, the events of this past week. Protests, riots, questioning a lot of people, even if they're not physically doing things and leaving the house, trying to figure out, you know, where do I stand? What do I want to say? We're all on high alert. Where are you telling people that you're speaking to to, to kind of I don't want to say Step back, necessarily, but maybe break it off into smaller bites, what do we do?
Mark Heyman 6:05
Yeah, I think there's a couple of things that we can do. The first is recognize that everything that we're feeling right now is normal, that anybody else in that same situation would be feeling would be feeling unsettled and unrest, feeling stressed about, you know, what's going on in the world right now. I think oftentimes, we have these situations where we feel we're feeling something and we feel guilty for feeling it, I shouldn't feel stressed, I shouldn't feel I shouldn't feel x. And I think that taking a step back and recognizing that, you know, these feelings are really normal. The next thing is really to talk to other people and to be able to vent to have some have a sounding board table to get your feelings out. Because that doesn't necessarily make the feelings go away, doesn't make them better. But certainly to be able to share about other people and get get affirmation and get validation for those feelings, is a super helpful thing that we can do as a way of processing And then also taking a step back. And, you know, recognizing that Yeah, the world is in a in a tough spot right now. But also, we don't have to over engage with what's happening. We have we taking a step back and taking a break from social media sometimes just that taking a break from the news can be a really helpful thing to give yourself some perspective. So that when you dive back in and learn about what's what's going on in your car, take start thinking about what you might be able to do to help the situation. You can see that from a fresh perspective.
Stacey Simms 7:33
Yeah, I think especially in a time right now we are we are being challenged to pay attention. And you know, and I can only come to this through the lens of what I have, which is a white suburban mom, right? You know, we're being challenged, pay attention. You know, learn, speak up, let other people know what you're thinking. But that doesn't mean be on twitter. 24 seven, that doesn't mean you have to watch all of the news is that what I'm kind of hearing you say
Mark Heyman 8:01
Yeah, I think that one thing that we think is that if we that we want to be in control, not necessarily of the situation, but certainly be in control of our feelings and be in control of our, our environment. And I think that one one thing that one way that people try to get control over those things, is they do something called over engage, they engage with the news, and they end they get involved with it, because they feel like the more that they know that and the more that they see the the ever changing landscape, the more control they'll have. And I think that that's a it's a certainly a valid point. But there's also some of the downside to that. Because Because as you're following Twitter, you know, constantly, it's stressful, and you're constantly looking for the changes, and that's stressful. And the reality is, is that on a minute by minute basis, nothing's changed. Nothing's changed in a sense that is going to really probably change what you do or how you react and so yeah, take take a step back and and recognize But over an aging doesn't actually help with your stress and sometimes they can actually make your stress worse and you know, increase it as well.
Stacey Simms 9:11
All right, let's bring diabetes into this because that's really you know, this is all about here on Diabetes Connections. And I don't live with diabetes, but I am I'll be honest I'm worried maybe it's a mom thing and I see the people in my Facebook group and I'm we're part of this larger community you live with type one. I mean, stress is bad for anybody but on top of type one diabetes. I'm gonna sound like a hypocrite because I was talking to this with my husband last night and he was pointed out I live with an autoimmune condition. I have ulcerative colitis laughing at me like why are you worried about diabetes you have to take care of yourself to which I really not, I'm not eating great. I'm not exercising like I normally do. So again, bringing back the focus to diabetes, but I guess any chronic condition you live with type one. Are you feeling more stressed? On top of diabetes
Mark Heyman 10:02
Yeah, I definitely am. I'm definitely feeling more stressed because I mean for lots of reasons one is that you know, I you know, I'm a stress eater so when you know when I when I'm stressed out and when I'm around food like that's that's one of my coping mechanisms for better or for worse and so that doesn't do great things for my blood sugar's also just stress in general is definitely impacting my blood sugar's but I'm seeing you know a lot more variations than I had before as well as sleep certainly my sleep isn't great because of the stress right now and when when out sleep while my blood sugar's definitely are hot running higher which makes me not feel great but also makes me more frustrated. So you know I'm a I work with people with diabetes and help them manage their stress. I certainly have a lot of those same stresses and so it can be a challenging a challenging thing to balance. One thing that I've done to really, really kind of helped myself is a couple of things one I had been really intentional about exercising. Luckily, I have a little bit of flexibility in my schedule and so I'm able to exercise on most days and I find that starting my day off that exercising helps my blood sugar's and also helps my stress. Also just cutting myself some slack and being kind to myself around my blood sugar's recognizing that, you know, I'm doing everything that I can to manage them the best that I can. And sometimes they're not gonna cooperate. And that's true anytime, but especially to when we're in a time of stress, where with all these other variables going on, just, you know, being kind yourself and giving yourself some grace and some slack can be really helpful and recognizing the time will pass. And that that will that may be a time where we can be much more intentional about our diabetes management, but also, it'll be smoother sailing, hopefully, because the stress won't be a compounding variable there.
Stacey Simms 11:53
Well, and that's such a great point because I was going to ask you and you pretty much answered it, but you know, when when someone With with tight diabetes control or someone who really is trying to manage Well, you know, if they have a very stressful time like this and their management, I'm gonna put this in air quotes, you know, slip. So you're seeing higher numbers or more variation. And then I think a lot of people have have guilt on top of as well. How do you deal with the guilt and not blame yourself? You mentioned trying to like dial back and see the bigger picture, it's not gonna last forever. Is that one of the things you'd recommend?
Mark Heyman 12:29
Yeah, I also think that, you know, connect with the community, whether that's on Facebook or Twitter or Instagram or in real life you can and recognizing that everybody else is going through the same thing and everybody else is having, you know, more erratic blood sugars right now. It's really valuable because the guilt comes from I think a lot of times people feeling different or feeling like they're all alone, and that everybody else with diabetes is doing great. And I'm the one who is having trouble and that's why I try to be really Open about you know, the challenges that I have with my blood sugar's like with like with my patients off kind of take out my phone and show them my CGM graph and show them that my blood sugar's are nowhere near perfect, because it makes them feel like you know, it takes some of that thing of that guilt away of recognizing that Yeah, I can certainly make better choices sometimes. But diabetes has a mind of its own and being okay with riding those waves is is critical for our mental health. Because if your only metric of success is keeping your blood sugar between those lines, and yet the only way you can not have stress in your in your diabetes life is by having perfect blood sugar's you're setting yourself up for failure. So we need to have a different way of looking at it.
Stacey Simms 13:45
Every once in a while mark, I'm just I'm stopped. I I can't even imagine what it is like to to live with type one just so much that you have to do and I have somebody you know, I have my kid in my house that I've we've accepted for 13 and a half years and everyone's While I keep thinking, gosh, it is really such a burden. But that's neither here nor there. You know, but just to hear you put it like that. I'll probably take all of that out.
Mark Heyman 14:08
But the way, let me say something there is, I actually try, I actually encourage people not to use that word Burg, because it kind of becomes a self fulfilling prophecy. You say diabetes is hard. It's such a burden. And you're right, I'm not gonna argue with you there. But then you, but then we won't talk about how big of a burden it is. It kind of gets it makes it it snowballs and grows and becomes bigger. And I think that when we say, you know, we have all of these things going on, we have diabetes, and COVID, and the George Floyd and all of all of these confounding things. And we say in diabetes becomes even bigger, a bigger burden. It's almost like this expectation that it should be, and sometimes it is, sometimes it's not, but we don't want to have people get to a point where they say, Well, I had diabetes and therefore this automatically means that you know, You want to I always give people the space to be able to, you know, see whether it's a burden or not, but not automatically assume that's going to be.
Stacey Simms 15:08
I love that. And I'm always working on being better at language. And I really appreciate that. You know, it's, it's, it's one of these things where, you know, you want to help and every once in a while, you know, you really, I slip on that, so I appreciate it. Um, but, but Okay, so but let's keep going on that right. Okay, so I'm a caregiver, I guess a little bit less so because my son is 15. And it's like when he was two when I was doing everything with him. Any advice for me, in addition to not standing around saying this must be such a burden for you? How can I upload, right? I mean, which he's doing great. He's got his own way to manage stress. We're talking a lot. He does exercise quite a bit, which has been really helpful. He's connected with friends, but as a parent or caregiver or spouse, any advice for us so that we're not putting more stress And the person we're trying to help.
Mark Heyman 16:02
Yeah, I think I think take a step back and recognize that you know, that he has it, he's got this taken care of and that you're certainly there to help him in whatever way that you can. But from what you're telling me, it sounds like he's doing really well, doing really well without responsibility. And so, and you know, when you're in, but certainly kind of the same thing about, you know, over engaging on Twitter around the protests right now. I think that over engaging with your son around diabetes, especially when there's not a whole lot you can do right now. I mean, because you're doing really well. That's add stress to you. And so if you're able to kind of take a step back, take a step back and not over engage with it doesn't aggravate him, but also gives you some space to recognize and also gives you space to recognize that but also see that he's doing well and give you the confidence that you need to continue to get that debt back because as she grows up and it goes to college Sunday Jimmy great scope for you to have.
Stacey Simms 17:02
We're working on it.
Mark Heyman 17:05
It's a never ending process.
Stacey Simms 17:08
That's great advice. Um, what are some small changes that you might encourage people living with diabetes in these crazy times to do?
Mark Heyman 17:18
Yeah, so a couple of things that I would recommend, I mean, just like just a simple tip is, you know, one of the things that is that people have really struggled with, that I've been talking to, over the past three months when we've been in quarantine is kind of the routine has been pulled out from under them, so they don't have to go into work anymore, they may not be able to go to their favorite restaurant or go to the gym. And so and diabetes can actually be a great grounding tool, because, you know, diabetes takes routine. And so making it so keeping keeping your diabetes or TF right now can be really helpful one for your management, of course, but also your mental health because if you know that every morning, going to check your blood sugar, change your CGM site every Thursday or whatever that was Is it can kind of give you some some grounding with it within your day. That's number one. Number two is do your best to stick to a fixed irregular diet. Especially, I mean, I know that this is a little bit late coming, you know, two or three months into this. But, you know, we talked about people who are who have really are having a hard time with blood sugars because they're home now and there have been a food all around them and so finding ways to kind of to to keep on eating healthy to the best of your ability and in a way to help you manager manage your blood sugar's can really, obviously make your blood sugar's more stable, but also help you manage the stress around those blood sugars. And then the third thing and this is one of my favorite tools that I that I use all the time I use it personally it also I also recommend to my patients to use is mindfulness. And what mindfulness is, if you don't not not familiar with it is being aware of your experience in the present moment without judging it. So You know, right now I feel stressed. And just recognizing Yeah, I feel stressed. You're not judging it, nothing, nothing good about it by being stressed. It just is. Right now I can tell you right now my blood, my blood sugar is 253. So I'm on the higher side. And I could I could look at that and say, I can't believe it's that high. It's, you know, I'm, I must have done something wrong. I'm an awful person with diabetes, and I just can't manage my diabetes, right? Or I can look at my blood sugar mindfully and say, Okay, well, I'm gonna look, my blood sugar's to 33. That's neither good nor bad. I feel a little frustrated with that. But that feeling of being a good or bad and just be able to recognize what you experience, because if you're able to do that, it gives you a little bit of distance from it, and doesn't let you get wrapped up in the story of what you know. What does that 253 mean about me? What is that frustration mean about me what is you know, whatever I'm experiencing mean about me because we all experience things all the time. We have thoughts and feelings and bloodsuckers, then You know, whatever all the time and be able to recognize that notice them without putting a story behind them can be really, really helpful. I think that's really also helpful for what's going on in the world. You know, recognizing your emotions and your thoughts and recognizing that those are normal experiences, but you don't the judge, you know, if you feel sad, if you feel angry, that is what you feel. And that's okay. So I'm a big fan of mindfulness. I could talk about it all day long. It really diabetes. But I think it's a really, really helpful tool, especially when things are overwhelming like they are right now.
Stacey Simms 20:39
I'm trying to remember I read it, but I read somewhere recently, and it's exactly what you're saying is you know, when you are feeling out of control, and you're feeling very emotional and you're feeling angry or sad or stressed, you know, to kind of breathe into it, and let yourself feel it. And that was a revelation to me. It has helped me so much it just kind of calmed me down to hear that that was okay to do. And I guess that is a bit of mindfulness.
Mark Heyman 21:05
Well, exactly, because because humans don't like to feel uncomfortable about anything. We don't like to feel physically uncomfortable. We don't like to feel emotionally uncomfortable. And so our go to strategy with those things is avoidance. We avoid, you know, you could think about doing your life you know, you want to have you have to have a difficult conversation with your husband or your kid and you put that off, you avoid it because you don't want to do it because it's not you're not going to feel good. If you go to the dentist and take them for granted. Because definitely not going to get and what would happen if you recognize that you're scared to go to the dentist or that you're that you're uncomfortable having a conversation, but you do it anyway. And notice the thoughts and feelings that you have when that happens, but you don't judge them. You just notice them and say right now I'm feeling really nervous. And that's okay because that's that's that's what anybody in my situation would feel. It doesn't mean anything about me. It just means that I feel nervous. And doesn't mean that comfortable. But it's just a recognition of what my experience is right now.
Stacey Simms 22:09
I don't know if you can answer this, and I'm a little uncomfortable asking, but I think we should talk about it. You and I are not. We're not people of color. Yeah. And so I don't want to say I don't want to try to put myself in somebody else's shoes like that. But I cannot imagine the stress right now. In the not only in that community, but in the diabetes community for people of color. Yeah, I mean, you because we can say, you know, turn off the news or be careful about this. But I think it is to the point right now, where many people and again, I'm probably saying something stupid here. So please forgive me. This is my perspective from where I sit right now. But you know, you can't turn it off. It's part of who you are. I'm wondering if you have any advice, perhaps for that community?
Mark Heyman 22:54
Yeah. Yeah. I don't think that I mean, I would be the only advice that I have, and I'm not sure this is great advice is to keep to keep talking. I think that I, what I've seen on this in the social media community is with people of color as well as people, you know, people, other people in the community, it's a lot of support, and a lot of like, and a lot of one of one, one, a lot of wanting to listen. And I certainly want to listen, I want to understand better because I know I don't understand, and I can't understand and I really want to try, but but I and it's going to help me to understand better if people of color in the diabetes community, continue speaking, and continue letting me letting us know what they want us to hear. Because I'm all ears.
Stacey Simms 23:49
We mentioned a few small changes that you might be able to make any big changes that you'd like to see people kind of work their way up to.
Mark Heyman 23:57
I think that can mean continued. This is a general But continuing to learn to learn about these issues and just continue and continue to have a thirst for knowledge and understanding around them, I think that I'm at that's, I think that's the best thing that we can do right now. And then really the most effective thing because that will hopefully not trickle but really expanding into bigger changes that we can all be a part of, and that we can all be we can all be helpful with. But I think that for our mental health, I really think that small changes are the best way of going about this, and then really trying to taking one day at a time and one one change at a time. You know, change is the big changes are so overwhelming, and they oftentimes feel impossible. And so breaking them down into smaller changes, just like we've been talking about with you know, maybe a bigger goal in mind. So maybe the question is not necessarily what what are the big changes but what are the bigger goals that we have for our mental health around diabetes, for diabetes management for our, for our inclusion, and what are the small changes that we can make that are moving us towards that goal. And certainly I can't tell you or anybody else what their what your goal should be. But I think that I think that defining that goal and really taking some time to think about that can be helpful in in helping you to define the small things that you need to make in order to get there.
Stacey Simms 25:27
Before I let you go, and maybe I should have started here since it's our first time talking. Let's talk a little bit about your diabetes story because you were diagnosed in college, right?
Mark Heyman 25:36
I was it was 21 years ago on Monday. So I was I just celebrated or just memories I should say my guy ever my 21st I aversary on Monday.
Unknown Speaker 25:47
Correct is beer. Sorry about that.
Unknown Speaker 25:50
Mark Heyman 25:53
Exactly. Yeah. So I was 21 when I was diagnosed that it was the end of my third year of college. I was at UCLA and No, I was for the for probably a month before I was diagnosed I was getting I was not feeling well and just kind of getting progressively sicker and sicker was all over the, in the typical symptoms. The problem was is I had this dream of going to France. I've been studying French for a long time. And I got I got an internship at the US Embassy in Paris for that summer. And I was, and I really didn't want to go the doctor because I was scared that they were telling me something was wrong, and I couldn't go to France. And so I put off going to the doctor for a long time. I couldn't tell you how long but it was a you know, something a couple of weeks. And finally got to a point where I just I was walking to class one day, last week on June the first 1999. And I couldn't go anymore. I'm like, I have to, I got something's got to change here. So I ended up going to the Student Health Center and I took a finger stick and it's at high. And I was like, well we know high, medium, low. By Tapi, that bad and the doctor has struck me in a chair and said Don't move. So we call the paramedics and they stopped me to a gurney. And the problem is that I was at UCLA and UCLA the Student Health Center is as at one end of the quad of a quad, but there was no road access. So the the angels had to park across the other end of the quad. And I had to be wheeled across the entire quad in front of, you know, the entire school to go to, you know, into the journey to go to the hospital. So once you tell you Medical Center, and we've diagnosed there, the next day, I had an appointment with my new endocrinologist and Peters was on call that day. And so she was she became my endocrinologist and spent a couple hours with me the next day and teaching me about diabetes and you know, giving me insulin and she's at the edge like, you know, there's other questions I can answer for you is like, well, I'm supposed to go to France in two weeks. Without hesitation like Well, of course your vote. So I want to tear it to each actor by diagnosis. I want to prepare us. I had no clue what I was doing. I would email her every couple of days my blood sugar's, but like it was, I mean, on the one hand, it was the best thing that could happen to me. It gave me the confidence that I needed to know that diabetes was not gonna stop me from doing anything. On the other hand, I was flying blind. And I survived. I was just fine, but it makes for a good story.
Stacey Simms 28:27
It's a great story. Wow. And how was the How was the internship? diabetes aside? Are you glad you went?
Mark Heyman 28:34
Oh, yeah, it was awesome. I mean, the internship was, you know, it was it was government work. hope we'll put it that way. Like I got, I got to live in Paris for the summer and you had a awesome apartment, the middle of the city and got to go and travel all around. And it was it was unbelievable.
Stacey Simms 28:51
Sounds like a once in a lifetime. I'm so glad you were able to go. Yeah. And then how did you decide that you wanted to work in the field that you Now, I mean, how do you get from being diagnosed in college to, you know, helping other people with diabetes with their mental health?
Mark Heyman 29:07
That's a funny story. So I kind of towards the end. So I majored in political science in college. And so as I was leaving college, after my diagnosis, I realized I didn't want to be a lawyer or didn't do, I didn't want to pursue anything kind of in that realm. And I came to the conclusion that I wanted to go into psychology, and a part of me wanted to do something diabetes related. I didn't, I was lucky that when I was first diagnosed, I was I was doing okay, psychologically, I didn't have a whole lot of big challenges other than kind of the normal diagnosis stuff. But I was really interested in you know, how this affects other people. So I did some research, and realized I wanted to become a psychologist, but not specifically around diabetes. However, to get into graduate school in psychology, it's really competitive. And I use a story. And so diabetes him like a good story to tell about how I wonder what people with diabetes and so I took That story, not really thinking that would ever come true. And it kind of did. I went to and I did research in diabetes, I saw patients who had diabetes, and I realized Not only do I love doing it, but it's also a huge need. And so, you know, I love it. It's a lot of fun, and it's really challenging. But I feel like I can use my own personal and professional experience to really make a big impact in people's lives. It's wonderful.
Unknown Speaker 30:27
Okay, and I have to ask you, you said you have a toddler. You have a baby.
Mark Heyman 30:31
Yeah, I have. I have a 17 month old. Yeah, it's wonderful. I was born last January, and now she's, she's walking and she's just starting to talk. And it's so cute, but it's a lot of work. Oh, that's fun.
Stacey Simms 30:43
have you all been, you know, at home for the last couple of months together?
Mark Heyman 30:47
We have. Yeah. So even though we had childcare we had my parents are in town here. So my parents were helping us out a couple days a week and we had some nanny help. But once this all happened, we kind of isolated ourselves entered just now getting back into letting my parents take care of her again. So, which is a great relief. But it's been, it's been a lot of fun and a great blessing to be able to spend time with her over the past couple months, but it's also it's taken a toll on, you know, my work and my I mean, my ability to do work that I need to be doing. So it'll be good to when we can get back into a more normal routine, hopefully real soon
Stacey Simms 31:25
as we start to wrap this up, you know, we've we've kind of, I guess we've scratched the surface on managing stress and diabetes, it really is a never ending issue, is it?
Mark Heyman 31:34
No, it's not. I think that we have I think that we have a lot more questions and answers here. You know, especially both both with Russell diabetes, as well as, how do we live it live in this kind of crazy world we're in right now, as well as living in this crazy world with diabetes. And so, you know, I wish that I had all the answers, but I think that we need to keep asking the questions because without the questions, we're not going to get any answers.
Stacey Simms 31:59
Mark, thank you so much. Spend some time with me. I'd love to have you back on to answer maybe some listener questions and go through more of this. But thank you so much for your time.
Mark Heyman 32:06
Oh, you're so very welcome. Thanks, Stacey.
Unknown Speaker 32:13
You're listening to Diabetes Connections with Stacey Sims.
Stacey Simms 32:19
I'll link up some more resources about mental health and diabetes, including Mark's website. And I said I was going to talk a little bit about some things I've been doing. I'll tell you the best thing that I have been doing to manage this stress is walking my dog. I walk my dog just about every day, and we don't walk particularly quickly. Boy, she would love it if I would run with her. I'm not a runner. And we are very, very fortunate to live near Greenway. So I'm able to escape. It feels like an escape, I promise. I mean, it's just green, and it's usually pretty quiet. It's getting very hot here. I'm in Charlotte, North Carolina. And most people who walk and run do it very early in the day or later at night. I don't mind it so much and I'll go out you know, 1011 o'clock in the morning. They have the place to myself. I'm careful with my doggie and we make sure she has water and all that stuff. Don't worry about her. But walking the dog listening to podcasts, sometimes listening to nothing really helps. And on those walks, I do not listen to news. I do not listen to news podcasts. I do not listen to serious issues. I listen to stupid comedy podcasts, like Game of Thrones podcasts, and some other fun ones. You know, pop the group, maybe we'll make a podcast list of things to listen to when you want to distract yourself.
Another thing I do that I do think helps is about half an hour before I go to bed. I try to do an hour but I'm kidding myself. About half an hour is I disconnect from Twitter and Facebook. I'm in bed, you know it's late. I'm seeing so much later than I was before this, you know, it's almost midnight, but I'll stop looking at the news. If I'm not really ready to go to sleep. I'll read a book for a little while or I'll play Solitaire on my phone. But I'm done. Sometimes I cheat. I mean, sometimes gosh, there's been nights you know, especially last week where I just I felt like things were changing moment by moment and I needed to see and I know that wasn't healthy, but I couldn't help it. I needed to know that was tough, but I know a lot of you feel the same way. And then the things I'm doing that are not so good as I'm definitely eating more junk and eating more than I was before. That was the worst for me. Honestly, back in April, I think April, I kind of felt like, ah, who cares, we're going to be indoors forever. No one's gonna see me again. And I'm just gonna wallow in this and I eat a lot of really bad junk food. And I've been drinking more alcohol, which is really unusual for me. And you'll laugh. I mean, drinking more alcohol means I'm drinking like once or twice during the week. I usually have like one or two drinks on the weekend. And that's it. But those are things that I've noticed that I'm doing because I'm stressed out.
But doing this podcast helps me immensely hearing your stories. Being able to tell some stories and having something to do right. Having something to work on is really valuable. So let's get back to it. Tell me something good. I love that 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, in 2013. When Benny started using the Dexcom share it. So trust me when I say using the share and follow apps makes a big difference. Benny and I set parameters about when I'm going to talk to him about diabetes, how long to wait, all that kind of stuff. But it helps us talk and worry about diabetes less. If he's at a sleep over or away on a trip when things are back to normal. It gives me so much peace of mind. It also helps if I need to troubleshoot with him. And this is what I love. 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 help us from keeping the highs from getting too high, and help us jump on those before there a big issue. Internet connectivity is required to access separate Dexcom follow up to learn more, go to Diabetes Connections.com and click on the Dexcom logo.
And tell me something good this week, I was scrolling through Facebook. I'm in a ton of diabetes groups and I mute all of them because otherwise it looks like diabetes book to me, right? It's everything. It's relentless. So I mute the groups and then I will Want to see stuff? I go back and look, I saw this in a Dexcom group and it really caught my eye. I will post the picture of it in our Facebook group for Diabetes Connections. So Dan writes, my seven year old was feeling crappy about being diagnosed and wearing a sensor. So I did what needed to be done and made him feel better with my permanent sensor. Just the outline color to come. His reaction was priceless. And yes, I cried.
And this is an amazing tattoo. It's a I mean, it takes up his entire upper arm like elbow to shoulder and it's an octopus, which I'm assuming he already had. And then the sensor is kind of in the octopuses. tentacles. tentacles. That's right, right. So it looks it just looks amazing. And then people in the group, of course, started chiming in with, you know, with really positive comments for him, but also, you know, hey, I have a tattoo or I have this idea. And people started talking about diabetes tattoos. And then somebody said, which was what I was thinking because it does CG six on it. What are you gonna do when you're on the g7 in a few months, and Dan said, I don't know. Maybe another tattoo Somebody else said no, that octopus has seven more tentacles, just put it there. And I guess he's gonna come back and show the truly finished product. But it to me it looks finished already, but I guess there's color coming so hopefully we'll do a revisit and we'll show you the finished tattoo then and a follow up
and I guess kind of a wrap up to something that I shared. I think I only shared this on social media, the diabetes family connection, the T1D 24/7 challenge. This was for the entire month of May. And the diabetes family connection puts on different programs they put on the diabetes camp in my area. These are the guys behind Project 50 and 50. Last summer were two guys with type one summited the highest peak in all 50 states in 50 days. And while there was a an injury and an accident, they did finish and so it was pretty incredible stuff. But their 2024 seven was a challenge that asks people to move every day for the month of May. They said you know no days off for managing T1D no days off during this Challenge. And there were some rules and interesting little things that of course, they want the people to maintain social distancing. And it was a fundraiser as well, they had a Spotify playlist. One of my favorite things about this is the warnings we all got because this playlist was not moderated for explicit lyrics. As I said, these are the guys who put in our diabetes camp. So a lot of parents on their list. We appreciate that heads up you guys. So congratulations to the diabetes family connection for a really big and well done fundraiser. I'm sure they'll be doing more like this and some of them are in our Facebook groups. So we will continue to spread the word.
If you have a Tell me something good story, let me know email me Stacey at Diabetes connections.com or, you know, just give me a shout out on social media and we will get it on the show because it's my favorite part of every week. So tell me something good. If you're listening as the show was first released later this week, the American Diabetes Association Scientific Sessions is going to be kicking off this is the atheist conference for the a DA and it is their first virtual experience. What does that mean for you and me? Probably not much. I have never been to the scientific sessions I was thinking about going this year. But of course, it did not happen. But this is the time when a lot of studies come out. This is when a lot of the companies that we all follow release big news. So please stay tuned. I'm going to try to follow as much as I can on social media. We do have shows planned in the weeks to come with everybody that you would expect. I'm really excited to be able to share some of these studies. Some of these things are embargoed. But after the Scientific Sessions, I would say probably by next week, this time, I think we'll all have a better idea of where the study's on technology stand, and probably one or two surprises because every year something pops out from this thing that's either a breakthrough study or something that didn't work out and completely stopped or you know, somebody from outside the ADA scientific session says, Look at me over here, so we'll see what happens. But I hope you'll follow along. I'll do as much as I can to give you the information now, and then go in depth with the newsmakers As they come on the show in the weeks to come,
thank you to my editor john bukenas from audio editing solutions. Thank you for listening. I hope you got something valuable out of today's show. I hope you'll continue to engage and let me know if I can help what you need what you want to hear. You know, I made fun kind of earlier in the show about these are challenging and difficult times. You know, man, they really are and we need each other more than ever. Thanks for being here. I'm Stacey Simms. I'll see you back here next week. And until then, be kind to yourself.
Unknown Speaker 40:34
Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rights avenged
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