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Diabetes Connections with Stacey Simms Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Now displaying: 2021
Feb 25, 2021

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

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

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

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

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

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

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Episode Transcription: 

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by Inside the Breakthrough, a new history of science podcast full of Did You Know stuff.

 

Announcer  0:13

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:19

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

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

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

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

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

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

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

 

Aaron and Hannah:

Absolutely. As are we,

 

Stacey Simms  4:25

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

 

Aaron Horowiz  4:35

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

 

Stacey Simms  5:28

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

 

Unknown Speaker  5:50

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

 

Stacey Simms  6:07

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

 

Hannah Chung  6:16

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

 

Stacey Simms  7:15

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

 

Unknown Speaker  7:30

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

 

Stacey Simms  9:08

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

 

Hannah Chung  9:22

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

 

Stacey Simms  9:32

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

 

Unknown Speaker  9:50

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

 

Stacey Simms  11:23

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

 

Hannah Chung  11:38

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

 

Stacey Simms  13:09

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

 

Hannah Chung  13:21

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

 

Stacey Simms  14:17

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

 

Unknown Speaker  14:28

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

 

Stacey Simms  16:26

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

 

Unknown Speaker  16:37

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

 

Unknown Speaker  16:50

Yeah,

 

Unknown Speaker  16:51

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

 

Stacey Simms  16:55

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

 

Unknown Speaker  17:11

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

 

Stacey Simms  17:25

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

 

Unknown Speaker  17:29

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

 

Stacey Simms  18:22

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

 

Hannah Chung  18:31

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

 

Stacey Simms  19:30

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

 

Hannah Chung  19:42

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

 

Stacey Simms  21:16

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

 

Unknown Speaker  21:31

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

 

Stacey Simms  22:39

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

 

Unknown Speaker  23:03

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

 

Stacey Simms  24:36

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

 

Hannah Chung  24:43

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

 

Stacey Simms  26:57

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

 

Unknown Speaker  27:12

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

 

Unknown Speaker  27:17

Same here.

 

Unknown Speaker  27:19

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

 

Hannah Chung  28:42

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

 

Unknown Speaker  28:47

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

 

Unknown Speaker  29:11

And so

 

Unknown Speaker  29:13

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

 

Unknown Speaker  30:31

tackle you.

 

Unknown Speaker  30:31

Exactly.

 

Stacey Simms  30:33

And what was your perspective?

 

Hannah Chung  30:35

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

 

Stacey Simms  31:52

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

 

Hannah Chung  31:56

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

 

Stacey Simms  32:41

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

 

Unknown Speaker  33:05

both have the same teacher.

 

Stacey Simms  33:06

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

 

Unknown Speaker  33:13

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

 

Stacey Simms  33:28

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

 

Unknown Speaker  33:35

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

 

Stacey Simms  33:47

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

 

Unknown Speaker  33:55

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

 

Stacey Simms  34:33

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

 

Announcer:

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  34:50

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

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

 

Benny

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

Feb 23, 2021

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

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

JDRF COVID Vaccine statement/info 

ADA COVID Vaccine statement/info 

In our Innovations segment this week,

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

and a new study about closed loop and kids.

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

 

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Episode Transcription:

 

Stacey Simms  0:00

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

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

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

 

Paul Madden  0:40

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

 

Stacey Simms  1:01

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

in our innovation segment this week, preventing type one and the tiniest patients, a new European studies looking at babies, and another new study this one about closed loops and kids. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

 

Welcome to another week of the show, I am always so glad to have you here. We aim to educate and inspire about diabetes by sharing stories of connection with a focus on people who use insulin, my son was diagnosed with type one more than 14 years ago, he just turned 16. Recently, my husband lives with type two diabetes, I don't have diabetes of any kind. But I have a background in broadcasting. And that is how you get the podcast.

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

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

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

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

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

 

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

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

 

Paul Madden  8:01

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

 

Stacey Simms  8:11

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

 

Paul Madden  8:49

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

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

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

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

 

Stacey Simms  12:38

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

 

Paul Madden  13:12

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

 

Stacey Simms  13:27

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

 

Paul Madden  13:34

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

 

Stacey Simms  15:00

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

 

Stacey Simms  15:18

Right back to Paul answering that question. But first Diabetes Connections is brought to you by Gvoke Hypopen. And you know, almost everybody who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's what Gvoke Hypopen comes in. It's the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go. With no visible needle. That means it's easy to use in usability studies, 99% of people were able to give Gvoke  correctly, I'm so glad to have something new, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit gvokeglucagon.com slash risk.

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

 

Paul Madden  16:08

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

 

Stacey Simms  17:14

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

 

Paul Madden  17:24

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

 

Stacey Simms  18:08

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

 

Paul Madden  18:26

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

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

 

Stacey Simms  21:08

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

 

Paul Madden  21:17

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

 

Stacey Simms  21:37

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

 

Paul Madden  21:53

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

 

Stacey Simms  23:34

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

 

Paul Madden  23:51

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

 

Stacey Simms  25:07

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

 

Paul Madden  25:35

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

 

Stacey Simms  26:30

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

 

Paul Madden  26:40

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

 

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

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

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

 

Stacey Simms  32:30

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

 

Paul Madden  32:47

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

 

Stacey Simms  32:56

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

 

Paul Madden  33:11

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

 

Unknown Speaker  33:23

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  33:29

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

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

 

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

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

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

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

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

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

 

Stacey Simms  40:48

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

 

Benny  41:03

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

Feb 18, 2021

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

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

Video of Sam's plays from 2013

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

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

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Episode Transcription:

 

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by inside the breakthrough. A new history of science podcast full of Did you know stuff like does snake oil actually contain snakes? If you're intrigued by science get excited about the process of discovery and one of the best stories that your next dinner party inside the breakthrough is the show for you.

 

Announcer  0:25

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:31

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

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

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

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

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

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

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

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

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

 

Sam Fuld  4:31

Hey, thanks for having me.

 

Stacey Simms  4:32

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

 

Sam Fuld  4:41

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

 

Stacey Simms  5:14

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

 

Sam Fuld  5:21

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

 

Stacey Simms  6:09

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

 

Sam Fuld  6:23

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

 

Stacey Simms  6:59

Nobody was sharpening the needles.

 

Sam Fuld  7:02

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

 

Stacey Simms  7:29

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

 

Sam Fuld  7:34

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

 

Stacey Simms  8:11

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

 

Sam Fuld  8:13

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

 

Stacey Simms  8:28

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

 

Sam Fuld  8:40

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

 

Stacey Simms  9:29

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

 

Sam Fuld  10:00

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

 

Stacey Simms  10:26

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

 

Unknown Speaker  10:50

That like,

 

Sam Fuld  10:52

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

 

Stacey Simms  11:59

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

 

Sam Fuld  12:27

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

 

Stacey Simms  14:20

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

 

Sam Fuld  14:28

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

 

Stacey Simms  14:35

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

 

Sam Fuld  14:37

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

 

Stacey Simms  14:56

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

 

Sam Fuld  15:03

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

 

Stacey Simms  15:39

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

 

Sam Fuld  16:08

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

 

Stacey Simms  17:28

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

 

Unknown Speaker  17:42

a lot of data

 

Stacey Simms  17:44

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

 

Sam Fuld  18:02

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

 

Stacey Simms  19:46

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

 

Sam Fuld  19:52

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

 

Stacey Simms  20:21

out. Great.

 

Sam Fuld  20:23

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

 

Stacey Simms  20:51

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

 

Sam Fuld  21:08

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

 

Stacey Simms  21:50

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

 

Sam Fuld  22:30

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

 

Stacey Simms  23:54

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

 

Sam Fuld  23:59

But I'm glad he did. Yeah.

 

Stacey Simms  24:02

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

 

Sam Fuld  24:20

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

 

Stacey Simms  24:54

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

 

Sam Fuld  25:10

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

 

Stacey Simms  25:40

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

 

Unknown Speaker  26:01

No, there's

 

Sam Fuld  26:01

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

 

Stacey Simms  26:49

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

 

Sam Fuld  26:52

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

 

Stacey Simms  28:04

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

 

Sam Fuld  28:09

Thanks for having me. I appreciate it.

 

Unknown Speaker  28:16

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  28:22

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

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

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

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

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

 

Benny  30:52

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

Feb 16, 2021

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

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

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

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Click here for iPhone      Click here for Android

Feb 11, 2021

Spare a Rose has become an annual tradition in the diabetes community. The idea is simple: this Valentine's Day buy eleven roses, rather than the traditional dozen, and donate the money you save to the campaign. The cost of just that one rose will provide a child with diabetes in an under-resourced country enough insulin for one month.

This interview is from our first Spare a Rose episode back in 2016. Stacey talks to advocates Scott Johnson, Kerri Sparling & Bennet Dunlap. In addition to learning more about he life-saving program, they also play our very first game show.

Find out more and donate to Spare a Rose via Life for a Child

Scott's Diabetes (blog)

Kerri's new book! Rage Bolus

Your Diabetes May Vary - Bennet's blog

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode transcription (untouched by human hands - our computer doesn't speak diabetes very well - check back for the edited/cleaned up transcript!)

Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by insight the breakthrough surprising stories from the history of science. This new podcast connects old stories to what modern day medical researchers are facing.

Announcer 0:18
This is Diabetes Connections with Stacey Simms.

Stacey Simms 0:23
Hello and welcome to one of our classic episodes. I am so glad to have you here I am your host, Stacey Simms. And as always, we aim to educate and inspire about diabetes with a focus on people who use insulin. I want to talk to you about sphere of Rhodes. And if you think you know what that is all about, stay tuned anyway, because I guarantee nobody else has done a podcast like this on this issue all about sphere arose. So what is it? Well, each February since 2013, the diabetes online community all over the world has supported the charity life for a child through the spare aros save a child campaign. It is a very simple idea. Valentine's Day is coming up in the campaign goes all throughout February. But the thinking is that you should send 11 rather than 12 roses to the person that you love on Valentine's Day. And then the money that you saved from that one rose goes to spare a rose, and that one rose will provide a child with diabetes in an under resourced country enough insulin for one month. The math here is pretty simple. One rows equals one month, there are links in the show notes that on the homepage, I'll put them out on social as well with more information and easy ways to donate. I set mine up every year to just kind of keep going every month. It's very simple. And I was really excited way back when for my first spare arose episode on this podcast because I got to talk to three terrific advocates who helped create and nurture the program and continue to do so today. So I'm really excited to bring you this classic episode from 2016, which also features my very first game show on this podcast. We'll get to that in just a moment. But first, this episode of Diabetes Connections is brought to you by inside the breakthrough a new history of science podcasts full of digital stuff. The most recent episode is all about the electric car. I got a sneak peek, sneak Listen, I love this show. It is all about how bad timing killed the electric car. But it's also explaining rural versus urban, and women entering the workforce and there's so much going on in the background of the story. Inside the breakthrough was created by Simon Simon is a group of Canadian researchers dedicated to changing the way we detect treat and even reverse type two diabetes. You can find inside the breakthrough and this latest episode at Diabetes connections.com or just search for it anywhere you listen to podcasts. My guests this week are three people familiar to many of you. They always step up when they're needed. And I'm lucky to call them my friends now. Scott Johnson works at my sugar. He was there back when we spoke for this interview. But I knew him best at the time from his blog, Scott's diabetes. Bennett Dunlap has two children with type one, they're adults now. And since we first spoke, he has been diagnosed with Type two. He's been very open about that. He's been writing about that. And we last spoke when we were on a panel in gosh in November, December just of last year, and he was continuing to share his story. Carrie Sparling was writing six until me every weekday at the time of this interview, she did close the book on that blog not too long ago, she has just published a book of poetry. It's called range bolus. And I will have a link in the show notes I just found out about that I haven't had a chance to order my copy myself. But I will very excited for carry on that. And another note spare arose itself has changed a little bit since this interview, you'll hear us talk about Johnson and Johnson's involved made a few other points that may have changed, but the mission and the need have not changed. So if you can help, please do so. And remember, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Then it Carrie and Scott, welcome to Diabetes Connections.

Unknown Speaker 4:09
Oh, thank you, Stacey. It's

Unknown Speaker 4:10
a pleasure to be here.

Unknown Speaker 4:12
Thanks for having us.

Unknown Speaker 4:13
Yeah, it's a thrill. Thanks,

Stacey Simms 4:14
Kerry. Let's start with you. Tell me a little bit about how spear rose came about.

Kerri Sparling 4:19
I'm sure and I'll probably screw it up just a little tiny bit. So guys feel free to jump in and correct me at any point. But I'm spare Rose was born out of as you had mentioned, the Partnering for diabetes change group kind of got together and tried to come up with an idea and it's not exactly it's actually not at all sponsored by the IDF but their charity life for a child benefits from this program. So what it is like you said, you know, instead of buying the roses, you you really what it actually is, let me just back up a little bit is it's a way for those of us who have access to a lot to acknowledge that privilege and to kind of pop that bubble of privilege and help touch the lives of people outside of that access point. And you know, give a little of what we have two other people living with diabetes. We know what it's like. to miss an insulin injection or under calculate an insulin dose, we know what high blood sugars feel like the idea of having a child suffer from that and potentially die from that is too heartbreaking to even comprehend. So if there's a little bit that we can do to help move, the mission forward of gaining access to insulin for other people around the world, you know, in developing countries, we were like, yeah, this is something we we can't not do this is this is a must. So we all got together and decided that we could try to rally the community around this cause I think it's been very successful. Because again, it's not like one person or one group or one. I don't know, any driving force that that that runs this, it's everybody touched by diabetes has the chance to reach in and impact lives in a really, really big way. It's kind of hard to say no to that.

Stacey Simms 5:45
And Scott was part of the idea here to keep it kind of simple. I mean, you buy food, you can still buy flowers on Valentine's Day, but maybe donate the value of just maybe one or two roses, what that would cost.

Scott Johnson 5:55
Yeah, absolutely. I mean, simplicity is, is really important. When it comes to ideas like this, and I think ideas need to be simple in order for them to take off and and for a lot of people to get behind them and support because they have to be simple to understand for those of us who are really involved in the in the community and involved in diabetes, we understand and get it. But we're we want this message to reach many people who are not necessarily touched by diabetes or not, not that involved in the community. We wanted to reach a much wider audience. And so it needs to be a very simple idea, both simple to a to explain, simple to understand and simple to do as well.

Stacey Simms 6:46
And Bennett, you're very involved in policy, do you think people are still surprised to find that, while we're talking about a specific kind of access here in the US, perhaps that in other parts of the world, the access is is much more limited?

Bennet Dunlap 6:58
You know, I think that maybe they are and maybe it's a good thing that we remind them, but I don't think that anybody is surprised that insulin is hard to get and economies that are struggling. So like Carrie said, this is an opportunity for everybody to join in. Nobody owns sparrows, the community own sparrows, you own sparrows, because you're doing this podcast, God owns it, because he writes about it, whoever jumps on board is a part owner of what we're doing here. And like Scott says, It's super easy to do. So what do you do you go to spare arose.org all one word sparrows. And you click on the big rows at the top of that page. And it's going to take you to a donation page. And you can give through PayPal stupid easy, there's two dropdowns, you can give a one time gift you can give a rose. So you know Valentine's Day, a full bouquet of fancy dancy roses is maybe 60 bucks. So you take thinking give 11 take five bucks, give it the sparrows that's going to help a child stay alive for a month. Or maybe you give monthly, maybe you give a rose every month, that's a full dozen roses over the course of a year, five bucks a month. I mean, I got a Starbucks coffee staring at me. And you know, five bucks a month is way less than what I spend on coffee. And that will keep a child alive for a year. So you go to sparrows.org. either click on the give button or just click on that giant rose on the top there. Click the drop downs for whatever type of donation you want to make. Make the payment through PayPal, boom, you're done. You've helped save a life.

Stacey Simms 8:35
And Carrie has been described as stupid easy, which I think is great. Bennett it really sounds like it's simple. Okay, you know, what has this come to mean to you this is I believe this is the fourth year that you will have tried to get the word out and supported this. Are you seeing change through it? Do you feel like this is something that will continue? Oh, God, I

Kerri Sparling 8:55
will I mean, I I really hope it's something that will continue. But I think that change happens twofold. The first is the most important change, which is every every little donation goes and changes and improves and potentially saves the life of a child that's that is the Paramount thing, the thing that should always be on the forefront. But secondarily, people in the community are becoming more and more aware of what we truly have access to and how lucky we are as a group of people. I mean, here we are sitting on this Skype call. We're using our computers we texted before using our emails, whatever super privileged, very lucky, I don't worry about where my next injection of insulin is coming from, but to think about Hey, what's it like to worry about that what's it like to not have access to something I'm so accustomed to, to recognize how lucky we are, helps people step outside of themselves, help the community kind of evolve and grow in a way that really benefits everybody, not just the people in the community but the people outside of the community who are part of the community, but are benefiting from this campaign. We never meet these people whose lives that were changing but but knowing that we're able to, to make that change. That's really powerful stuff. And I'm hoping that out through this campaign, it helps kind of bring to bloom other ideas from different groups about how to acknowledge what we have and spread the wealth.

Stacey Simms 10:10
Well, that's a really good point. Because Scott, as the point was made here, you know, this is not an idea that has a little tm after it, there's not really a copyright. Right, there isn't a tm, I didn't make that up. Just to just to check. So when we say no one owns this, and the community owns this, Scott, how have you seen that taken off, because it does look like the diabetes community really has embraced it?

Scott Johnson 10:34
Well, I think it's important that that that it is embraced by everybody. And this is an idea that, that needs to be owned and embraced by as many people as possible. If If, if there's someone that tries to own something like this, it just doesn't go as far. So the whole thing is just get it out in, in, owned by owned by everybody owned by anyone that can talk about it or share it, you own it, you You are a part of it in and everybody involved with it, as is so thankful that you are doing what you're doing for it. So yeah.

Stacey Simms 11:12
I'm curious to you know, the diabetes online community is a very big community. But it also seems very small in that we all kind of get to know each other. And you know, you really are many people are very accessible on Twitter, or you can you can reach them. I guess what I'm getting to and Carrie, let me read this to you is, how did you all come up with this? We talked about the you Partnering for diabetes change? What is that? Did you all sit around a table and Scott had his diet coke? And you guys kind of talk about it that way? How did it come about?

Kerri Sparling 11:43
The sparrows idea itself?

Unknown Speaker 11:45
Yes,

Kerri Sparling 11:46
well, this, the Partnering for diabetes change coalition is a group of people who were brought together with assistance from Johnson and Johnson. So we do have to give them a huge nod because they, they don't own this project. But they've helped in part to shepherd it. And I'm really proud of of the investment that they've made in bringing the advocates together so that we could incubate this kind of idea, the idea itself, and Jeff is going to hate me for saying this. But the idea was actually born from Jeff Hitchcock, who runs the children with diabetes group. And it was just latched on to immediately by everybody in the room because it didn't serve an agenda. It didn't serve anybody's ego. It wasn't this Oh, look at me sort of thing. It was more this is actual social media for social good. This is a powerful thing. And everybody just took it and, and ran with it. So it was it was an awesome meeting. And what's come of that is, like everyone has mentioned already, nobody owns it. So this one idea, which was incubated by the group has been grabbed by the community of people living with diabetes, and beyond the diabetes community, into the patient community, and to people who work for diabetes companies. I mean, there's a lot of potential for this idea to spread. And it's a good idea to spread.

Stacey Simms 12:51
And better give me your perspective, because as I mentioned, you work a lot now, with policy and that's been your interest for a while, put this in perspective for us in terms of how much easier perhaps something like spare Rose is to create change and to have an actual impact, as opposed to trying to make change happen legislatively? Well,

Bennet Dunlap 13:12
you know, I'll tell you, I think that spirit Rose is the foundation of other change. I will tell you flat out that when we did the strip safely campaign, I went took the notes of how we created sparrows and just replayed them with different branding. So, you know, you mentioned that the community is large, but it feels small, I think the community is large, but it feels intimate. And what we can do with that intimacy is ask each other to help. And sparrows, to me is the very foundation of helping because like Carrie said, You're helping people you don't know you'll never see them. If you're super lucky, maybe you'll be at an event where IDF shows some of the art that these kids make, you know, and it's typical refrigerator art. In it, you see a little bit of an image of a kid that realizes they're staying alive because they're getting this magic Insulet from somebody. And that to me is the key is that we do things for others. We do things for people that will never see and then eventually we can do things for policy. But you know, if we're not living for others, we're never going to get to the policy stuff. So to me sparrows is foundational in everything we do. It's all about other people and taking the gifts you have and sharing them.

Scott Johnson 14:30
It's you know, there's it's important to know that any anything helps, right like, this has been a really wonderful idea. We've seen it go a great ways so far. But if if all you can do is is one rows, that's a tremendous help before you can do a spread if you can't do one rows, but you can help spread the message. That's also a tremendous help like don't undervalue whatever You can do to help this cause it all, it all goes a very long way.

Bennet Dunlap 15:05
You know? Absolutely, it's about doing what you can. And when we track what happens, we track how many people have given, doesn't matter how much you give that that you give is important to us. And if you can find five bucks, that's great and echo what Kerry said, you know, we really fortunate that the J and J brought us all and put us all in a room and then step back and, and let ideas flow. And I agree with what carries it Jeff came up with this idea and we jumped all over it hijack the rest of the agenda and spent the day figuring out how to make this work. But it isn't just j&j to get help. So if you have a business and you want to do a fun morale booster in February, let's face it, February in North America sucks. It's cold, rainy, and awful. or snowy and awful. So have a little campaign in your office put a little sign up by the coffee pot. It could be you know, your your local HVC vendor, it could be another company in the industry. Whatever this isn't a company's it isn't a person. It's everybody's

Stacey Simms 16:12
more info on all of this at Diabetes connections.com. And I really hope you find it in your heart to learn more and to donate spare rose is a great cause. And we're going to do our best to make our own donations with something fun today. If you're familiar with Wait, don't tell me the NPR Quiz Show. This next segment is with full credit. And full apologies to those fine, folks. We're gonna have the Diabetes Connections version of bluff the listener and a News Quiz. If you're not familiar with Wait, wait, don't tell me. If this will still be fun. It's just kind of kind of silly. All right, so we need to welcome a listener. And I'm so excited to welcome Laura Duvall. She is here in Charlotte, and she's a published writer, founder of duelled marketing group. Laura, thanks for being here.

Unknown Speaker 17:01
Absolutely. Thanks for having me. I'm excited.

Stacey Simms 17:04
Laura, you have type 1 diabetes, right? Tell me a little bit about about you.

Unknown Speaker 17:10
Oh, absolutely. So I was diagnosed with Type One Diabetes, when I was 10 years old. And have really benefited I think over the last 20 years, 25 years or so with the new technology in play for diabetics. So I got a pump when I was in high school that really allowed me to kind of play sports and go out with my friends. And about two years ago, I got one of the Dexcom sensors, which has totally changed my world. I'm a big runner. So I have done quite a few half marathons, was actually training to run the Disney marathon this coming weekend I got injured. But the technology that's available for diabetics now is really amazing. I mean, it just gives you confidence that, you know, you can be an active and force and you're not having to test your blood sugar 800 times a day. So you know, I have had really benefited I think from the advances in technology with diabetes and you know, love love being involved in the starlight community and then the health and wellness area. I've worked for a health care system for about eight years in marketing and and now have stepped out on my own to do the same thing. So I'm really excited to be a part of today.

Stacey Simms 18:27
Excellent. Well, thank you so much for joining us. And you, you set this next segment up perfectly talking about new technology, because every year, there are lots of announcements of diabetes, product breakthroughs, and some are useful and very helpful and they change our lives for the better is easy, we're just talking about, but some make a splash never really take off. And others are just abject failures, like the ones you're going to hear about. Our guests are going to relate a story of a failed diabetes product. One of these products is for real it made it to market, but the other two are products only of our imagination. Laura, if you can guess which is the real deal. And Bennett, Carrie and Scott are going to do their best to fool you. Diabetes Connections will make a $50 donation to spare rose in your name. Are you ready?

Unknown Speaker 19:18
I'm ready. All right.

Stacey Simms 19:19
Carrie, are you set? Why don't you go first?

Unknown Speaker 19:22
All right,

Benny 19:23
let me sell it to you.

Kerri Sparling 19:24
So tech savvy type one teens have created a new app for your smartphone or tablet. It's called selfish and it's aimed at those whose parents use remote monitoring software like you know, Dexcom share nightscout. So the app creates a fake book kind of reasonable blood glucose graph, which is that beam back to the parents device. So when they look at their phone, they're like, Oh, good. My kid is doing what they're supposed to be doing. And it also includes text notifications, like yes, I checked or Yes, I have my neater however the Creator is being teenagers, you know how teenagers are. They couldn't resist being kinda like slightly jerk faces. So an early version of the app included hidden jokes and a few inappropriate It references to Nick Jonas as most things do. Parents nearly half as stupid as teenagers think they are picked up that something might not be exactly right after the first few references to this Disney Channel though Daya booty which is they give you a weird even saying that out loud.

Unknown Speaker 20:14
But the tech

Kerri Sparling 20:15
savvy parents have since created an override app and are on the lookout for updates. Not everybody

Stacey Simms 20:21
says diabesity carry that's not in your everyday vernacular there. Because that's

Kerri Sparling 20:25
what that is my wheelhouse, but I just felt weird saying it to all of you.

Stacey Simms 20:29
Okay, so the selfish app created by teens is our is our first story there. Bennett. Let's hear what you have.

Bennet Dunlap 20:39
Okay, well, I'm going to tell you about this great app. It's called the Neuchatel food analyzer. And it was going to be the answer for counting carbs on the go. You take a quick picture of your food and your phone. It delivers it the live operators at Neuchatel. And within three minutes, they promised an accurate within plus or minus 20%. So your judgment on accuracy may vary. carb count, users can also pay for upgraded access to more food information as well as ingredients and warnings for gluten allergens. How ever the product never made it out of beta testing, because that's when users found out that each meal came with snarky comments like, oh, that salad looks really delicious, good choice, or in my case, boom. Do you really need to eat that slice of cheesecake? Or Didn't you have a hamburger yesterday, further investigation showed that not only were the people behind this app particularly judgmental, they were also a division of a large Health Insurance Group. In other words, the neutral app would tell on you giving your insurance company valuable information about your eating habits. And once the word got out, the community went after it and it was scrapped.

Stacey Simms 21:50
Bennett's telling us about the nutrit L Food app which basically told on the user and their eating habits to health insurance. Scott, what do you have?

Scott Johnson 22:00
All right. Imagine using a laser to painlessly perforate your skin to get a drop of blood instead of having to use a metal needle. A company called a cell robotics created the laser net, which used laser energy to penetrate the skin. testing showed that adequate adequately trained patients could perform finger pinpricks with the laser device as easily and accurately as with land sets. But the laser required some difficult maintenance and instruction. And there was a noticeable odor of burning flesh with each test. Some user said that was a bit of a turn off, the price may have also kept this one from taking off. One LaserJet device cost about $500. Maybe because you could get close to a lifetime supply of regular lancets for that the laser printer is no longer available for purchase.

Stacey Simms 23:08
All right, Laura, your products are the lay set, which gave you great accuracy without having to poke your finger with a needle however, the smell of burning flesh turns people off the Nutri Patel health food app, which told on you or the selfish up which was developed by teenagers to fool their parents who use share and nightscout which one is real, which one is the real product that we did makeup

Unknown Speaker 23:36
was easy. As much as I would love to say it was the diet booty. I'm gonna go with number two, the neutral cow,

Stacey Simms 23:46
then it is the neutral tell a real deal.

Bennet Dunlap 23:49
I know it's fake.

Unknown Speaker 23:53
But I want

Bennet Dunlap 23:54
you to tell and diabetes, you're teaming up to sugars, but fake your carb counts.

Stacey Simms 24:02
We're still gonna make the donation to spare Rosie your name because you were such a good sport. And this was so funny. But yeah, the lace set. Scott, did you know about that product before you read about that?

Scott Johnson 24:16
A little bit. But it's like one of the many things that we often hear about as people living with diabetes where you know, these things come to market and you're like, Okay, this sounds so ridiculous that I'm just not going to even give it much brain bandwidth. So yeah,

Stacey Simms 24:34
yeah. But it was a real product. I don't know how far along because it was it was I think it was a little bit before my time in the diabetes community. Laura, it sounded like you might have heard of it when we mentioned it again.

Unknown Speaker 24:45
Yeah, it does sound familiar, something I may have read about. I think I just in my mind, I was thinking you know, the nature style app seems just like something that I could be going to market and just being a terrible disaster. I'll tell you what's funny. With my gut,

Unknown Speaker 25:00
yeah, well,

Stacey Simms 25:01
that's okay. But what's funny to guys is, I just saw this week that I'm not a app that hopefully reports back to anybody else. But that there are a few camera like devices that claim to show the nutritional information in your food. I mean, I think that's awesome. Yeah, very interesting stuff. I'm not sure how much we you know, we'd have to see some studies to trust it. But that That to me is amazing. Amazing. Absolutely. Well, Laura, thank you so much for playing as I said, we're still gonna make the donation to spare rose in your name. We really appreciate you taking part and thanks again.

Bennet Dunlap 25:35
Thanks, Laura.

Unknown Speaker 25:41
Scott, yeah. Oh, sorry. I

Kerri Sparling 25:43
was gonna say I love the way you read yours. Because the entire time every time you said laser, I kept picturing Dr. Evil.

Unknown Speaker 25:52
The laser,

Unknown Speaker 25:54
sir. Awesome. I just

Scott Johnson 25:56
had this, this image of like a waft of smoke coming up from her finger. You know.

Unknown Speaker 26:07
You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms 26:13
And our last segment today, we want to give you guys a little bit of a quiz. I don't think you can really prepare for this. So I hope you didn't study too hard. But as we mentioned, Kerry writes the award winning blog six until me, and the title refers to a piece that she wrote from the point of view of diabetes, which came into her life at age six, six until me and I'll link that up at Diabetes, Connections calm, I'd urge you to read it. But today, we're going to find out how much you will know about diabetes, and years ending in six. For this quiz. You'll hear a fact about diabetes and choose which year it happened. I'm calling it which six will it be? as well,

Kerri Sparling 26:56
I after I feel like I need to jump in because I've already screwed up the quiz. I was seven when I was diagnosed, I was using poetic license. I didn't think about SEO and I just now screwed up the entire podcast. So I'm sorry. My symptoms were when I was six,

Unknown Speaker 27:13
but the actual diagnosis was seven. I'm gonna hang up now. Even if you're a really good person, I really like you.

Stacey Simms 27:25
Thank you very much. I enjoyed the wordplay. So we're keeping it which six will it be? But I also like the facts. So that's great. All right. Each guest is going to get two questions. If a total of four of the six are answered correctly, we will make another $50 donation in a listeners name. In fact, carry might be paying that man, but we're gonna make a $50 donation to sparrows in elicitors name. Alright, so here we go. Which six will it be? next year? We're going to rename this sucker and we'll go from there. Alright, carry on. We're gonna start with you. The distinction? I know pressure, right? The distinction between what is now known as Type One Diabetes and type two diabetes was first clearly made and published. In what year 1876 1906 or 1930? Things quizzes

Unknown Speaker 28:20
I totally didn't study on. I'm

Unknown Speaker 28:22
going to go with,

Kerri Sparling 28:22
would you say 1936?

Unknown Speaker 28:24
Was that the last one?

Unknown Speaker 28:26
That's the one I'm using.

Unknown Speaker 28:28
Right? Correct. All right.

Unknown Speaker 28:30
All right.

Stacey Simms 28:33
Question number two, Scott. This is for you. Insulin, crystallization improved its purity and opened the door to the time action profiles such as extended insulin in what year was Insulet first crystallized? 1926 1946 or 1976?

Unknown Speaker 28:49
Hmm.

Scott Johnson 28:51
I'm gonna save the middle. The middle option.

Unknown Speaker 28:54
Oh, I'm

Stacey Simms 28:55
sorry. It's not 1946 it was 1926 Wow. Okay. 26. Right. Okay. Okay, Bennett, this one's for you. In what year did Eliot Jocelyn published the first edition of the treatment of diabetes at 96 1916 or 1936 96? I'm sorry, that's incorrect. 1916 is the incident we're

Bennet Dunlap 29:21
dragging the team down. We're just

Stacey Simms 29:24
which is kind of crazy because the you know, insulin wasn't commercially available until 1923. But that was when it was first published or carried

Unknown Speaker 29:33
out Gary.

Stacey Simms 29:38
When was the When was the first successful pink I've lost all control. When was the first successful pancreas transplant 1946 1966 or 1986. I'm sorry. Oh,

Unknown Speaker 29:51
third guess

Stacey Simms 29:53
that's right. Also could have been 1967. I guess. We got out When was the first wearable insulin pump invented? 1956 1966 or 1976. So,

Scott Johnson 30:08
so I'm thinking about, like my mind is, is saying, define wearable? And I'm picturing that. That photo. We've all seen of that guy with that gnarly backpack.

Stacey Simms 30:22
Oh, yeah, no, I don't you know what I have to, I'd have to check my notes. But I was talking really slowly there when I said, 1970s. I'm gonna

Scott Johnson 30:32
say 1976. Then

Stacey Simms 30:37
very nicely done. And I will, I will look that up and stick it in the show notes. Because I was thinking of the backpack guy too. Yeah, that's crazy. But I'm not quite sure what they I think by wearable they mean, like wearable with that behind your back. Portable, maybe even more so than that. Okay. And Ben at our last, I haven't been keeping track of who got what, right. 123 Bennett? When was NPH insulin released? 1946 1956 or 1966 56?

Unknown Speaker 31:05
Yeah,

Stacey Simms 31:10
I'm sorry. 1946. I should have I should have been a little bit more clear there, too. Okay, I think you guys got to share two and a half.

Unknown Speaker 31:20
All right.

Bennet Dunlap 31:22
This is the sixth quiz. And the only ones that count her from her because her podcast is six until me.

Unknown Speaker 31:28
Yeah, but I only got one, right. And also, I don't have a podcast.

Stacey Simms 31:37
I think we just need to move along. And we will make the $50 donation to spare rows. And I might give you each $50 to not have this.

Bennet Dunlap 31:45
So I think what's important to take away from this is the diabetes is hard. Even the history is hard.

Stacey Simms 31:53
And the numbers are always hard. It's not

Bennet Dunlap 31:55
just a numbers game.

Stacey Simms 31:58
Oh, my goodness. Well, thanks for playing along with that. That was quite ridiculous. And it was hard.

Unknown Speaker 32:08
Oh, you're so positive. He's the nicest. Okay,

Stacey Simms 32:14
so next year, which six? Will it be will turn into something with seven, but we'll figure it out

Bennet Dunlap 32:20
studying next year?

Stacey Simms 32:21
All right. It's kind of goofy. But it's all for a good cause. And I wish you all so well, this year with spare rose, I know it's gonna be a really big success. And it has been for the last few years. Anything else that you all want to add any other places that you're going to be appearing?

Scott Johnson 32:36
Well, I think Stacy, we we really want to thank you for helping spread the sparrows message that's really great of you and will go a long way towards helping the cause. And we really, really appreciate that. So thank you.

Unknown Speaker 32:50
Yeah,

Kerri Sparling 32:51
I'll echo that. And also, I mean, I love that you you picked spare rose to kind of run with as far as raising awareness and raising some money. So I'm hoping that other organizations follow you're very, very good lead and and jump in with this. And it would be great to have people in the diabetes community and the broader patient community. Be part of this, this thing that's so important to us,

Stacey Simms 33:12
Ben, any last words?

Bennet Dunlap 33:13
No, not at all, at all.

Stacey Simms 33:15
Excellent. All right. Well, once again, thank you all so very much for joining me Carrie Sparling. Scott Johnson Bennett, Dunlap, I appreciate your time and what you're doing for sparrows, end of the diabetes community. It's always great to talk to you. And we'll be in touch. I'm sure that there'll be a lot more sparrows news in the next two weeks. Thanks for being with me.

Unknown Speaker 33:34
Thank you, Stacey.

Unknown Speaker 33:41
You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms 33:46
If you would like to help or find out more about spare arose very easy. Just go to Diabetes connections.com and click on this episode homepage. As I said, I'll put some stuff out on social and I will link up to Karis book and Bennett's blog and Scott's blog as well. For more information. I'm going to also link you up to renza. Should Billy his blog because she is really taking the lead now I'm getting the word out about spear rose. We've had her on the show for other issues as well. But she wrote recently that in the eight years the campaign is run, they've raised more than $261,000. This is not a big corporate campaign. This is individual donations from, as they say on PBS, people like you, but I mean all kidding aside, that is 52,347 roses, which means that a whole year's worth of insulin has been provided to almost 4400 children and young people with diabetes and under resourced countries. renza wrote, I still get goosebumps just thinking about that. And renza I share that sentiment as well. Thank you for putting that together. Thank you for continuing to bang the drum for sparrows and get the message out and thank you all for donating look very simple as they said in the interview and I'm glad we were able to have some fun with it. But it is such a small thing that you can do the chemic such a serious difference. So if you can please help. And sometimes helping is just spreading the word I understand that everybody has the resources to give or your money is already earmarked for things. If you can share the Word that would be awesome. Thank you so much to my editor, john Buchanan's for audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

Benny 35:29
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged

Transcribed by https://otter.ai

Feb 9, 2021

Chris Stocker is a well-known voice from the early Diabetes Online Community, launching his blog about life with type 1 diabetes called Life of a Diabetic in 2007. In 2019, he stepped back a bit from the DOC with good reason: his daughter, four years old at the time, had just been diagnosed as well.

Now, two years later, Chris is jumping back into the online community via Instagram and a YouTube channel. He talks to Stacey about what it's been like for his family to adjust to their new situation. He also has a great message for any men who live with T1D.

In Tell Me Something Good, one of the scientists behind one of the COVID vaccine.. is one of us!

And some new books are our for the littlest ones of us..

The Adventures of Captain Lantus

Little Shots for Little Tots

When I Go Low: A Diabetes Picture Book 

Friends for Life information 

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

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Stacey Simms  0:00

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

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week a well known voice in the early diabetes online community stepped back for a bit stopping his blog and his brand new podcast when his daughter at age four was diagnosed with type one herself.

 

Chris Stocker  0:39

Do you want to help me do it? Do you want to help me I you know decorate my infusion sets and things like that. So we shared those common bonds and that's how we looked at it from the day of diagnosis was Hey, you're like daddy now.

 

Stacey Simms  0:51

It's been two years since Chris Stocker’s  daughter's diagnosis, and he's jumping back into the online community. Chris shares his story as a dad of a child with T1Dwho lives with it himself

in Tell me something good. One of the scientists behind one of the COVID vaccines is one of us and some new books for the littlest ones of us. 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. We aim to educate and inspire about diabetes with an emphasis on people who use insulin aim host Stacey Simms, my son Benny was diagnosed with type one right before he turned to more than 14 years ago. My husband lives with type two diabetes. You know, I started blogging just after Benny's diagnosis. And that blog, which I eventually called off the dial led me to the DOC the diabetes online community at that time, and this is 2007. When I started, it was basically blogs and some online chat rooms. And you know, gradually social media exploded and everything changed to what it is now shorter posts, influencers, more podcasts, that sort of thing.

The Twitter chat remains DSMA on Wednesdays, if you're not familiar with that, that is a 10 year old now more than 10 year old chat on Twitter, I'll put a link in the show notes, but it's just hashtag DSMA Wednesday evenings at 9pm. Eastern for anybody in the diabetes community we'd like to give it a plug it's not separated by type or if you're a parent or a person with type one. And that's one of the ways that I first remember meeting Chris stocker and it was great to talk to him this week for so many reasons, but it really brought me right back to those early days. You know, when we had diabetes blog we can you know, to feel like we're finding all these really to me amazing, cool people in my computer, which depending on your age, either sounds ridiculous or you know, right on you, you know what I'm talking about.

But before we get to Chris, I do want to share a Twitter post that I was tagged in this is self serving, but I just I have to share it. A gentleman named Hugh Stimson retweeted my episode release about Lily and Ypsomed and my conversation with with Mike Mason from Lilly diabetes all about that. And he wrote, “I wish political journalists asked follow up questions, the way Stacey Simms asks health device executives follow up questions.” Whew. Thank you so much for writing that. It's hard to describe what that means to me. And and compliments are always nice. But that right there is why I started the show back in 2015. I would listen to podcasts. And I'd be yelling back at the hosts, I'd be asking my own questions. I'd be like, follow up on that. He didn't ask. You know, look, radio people are interesting. And well, I am really glad to be built like this. It is an odd thing sometimes. But I'm glad it came in handy. I'm glad it helped. And I'm really glad that you feel like I'm doing a service by asking those questions and trying, you know, sometimes we don't get answers, but you got to ask. So thanks again. I really appreciate it.

All right, Chris Stocker  in just a moment. But first, Diabetes Connections is brought to you by Dario health. And you know, one of the things that makes diabetes management difficult for us. It just really annoys me and annoys Benny, it isn't actually the big picture stuff. It is all the little tasks adding up, you know, are you sick or running out of strips? Do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to mydario.com forward slash Diabetes Connections.

Chris Stocker’s  blog back in the day was called life of a diabetic and he wrote about everything from his diagnosis as a college student in 2009. To Day in the Life stuff to product reviews to what dragged him down and made him mad and what lifted him up. When his oldest daughter was diagnosed just before she turned four. Chris felt like he had to pull back and face this challenge before venturing back online in such a public way. But he never really left the community. And I think dads and men with type one as you listen, there is really great advice here for you in terms of support and asking for help.

Chris, welcome to the show. I'm excited to talk to you. I feel like we have talked before, but it's only been on Twitter and Social Media. Thanks for jumping on.

 

Chris Stocker  5:19

No problem. I'm definitely happy and honored to be a guest here.

 

Stacey Simms  5:24

Well, you're a podcast pro and a YouTube Pro. So this should be fun. But we do have a lot to talk about. Let's just start at the beginning for you. Because your diagnosis story happened when you were in college. Right? You were 19. Tell us about that.

 

Chris Stocker  5:35

Yeah. So I was I was a freshman in college, I was playing football at King's College up in Wilkes Barre, and the season was over. And I just was I was working out I was losing a ton of weight. I was drinking a lot of Gatorade and water. So I was urinating quite frequently. And I just thought I was losing weight because I was working out. And then this one night, I didn't have an appetite. I started getting sick all day long. And I ended up in the emergency room with 858 blood sugar.

 

Stacey Simms  6:05

What year was that? If you don't mind me asking.

 

Chris Stocker  6:07

That was in 2000. Wow. 2004.

 

Stacey Simms  6:10

What was the diagnosis process? Like? Did they you as a young adult like that? Did they believe you had type one? Was it an okay, diagnosis?

 

Chris Stocker  6:17

Yeah, it was. I honestly don't remember too much of it. Because I was kind of in in like a foggy state. My mom has worked at a hospital for almost 40 years. She took me to her hospital. So of course, we got the VIP treatment went right into the ER. And, you know, they took labs, and immediately The doctor came in and was like, You have type 1 diabetes. So there was no real question or debating anything whatsoever. Then I remember seeing the on site endocrinologist, probably I think it was that night. This was probably around 2am. So yeah, there was no discussion ever about whether it was type one or or another type of diabetes.

 

Stacey Simms  6:56

And what did they start you want? You immediately put on? I think 2004 elantas was around for adults, but not necessarily for kids. Like what what was your beginning entry into diabetes tree?

 

Chris Stocker  7:07

Yes, my very first night home, I can remember almost exactly the ratios and everything. I was taking 14 units Atlantis at night, the carb ratio was about 51 to 5015 to one. And that was Yeah, I was on lantis. And I think I started on probably either human log or no blog at that time. I can't remember that. But I didn't know anything about pumps or was never even brought up to me at that point in 2004. Either.

 

Unknown Speaker  7:36

Did you go back to college,

 

Chris Stocker  7:37

I I was not able to go back to King's College at that time. So I stayed home for a year I went to community college. And then I got this bright, awesome idea that I wanted to go to college away from Pennsylvania. And so I decided to go to Boca Raton, Florida and finish up school at Florida Atlantic University. So not only was I only a year or so maybe a year and a half, after diagnosis, I was then telling my mom that I was going about 1200 miles away to go to college. So it was definitely a rough conversation to have with her for sure.

 

Stacey Simms  8:15

Okay, well, it is sometime later, let's say right, it's, you know, we know you did pretty well in college, I assume. Can you give us parents the reassurance that you know, you You did? Okay, and that was the right move for you?

 

Chris Stocker  8:27

Yes, I mean, it definitely forced me to really grow up pretty quickly. I mean, I was 20 by the time I went there, but I was a little bit more mature than a lot of my, you know, my roommates and a lot of my classmates, because I was managing this disease pretty much by myself. I had no family, no friends down there. So it was really it was on me, I was in constant communication with my diabetes educator up here in Pennsylvania. So I was able to communicate via email with them quite often. So you know, there were some times where I had some pretty high blood sugars. I did actually end up at the ER one night, because I was getting my insulin through the school on campus pharmacy, which was not open on the weekends. And I thought that I could go from Saturday afternoon till Monday morning with just about 10 units of insulin which I use in one meal. So I actually ended up in the ER, I had met my girlfriend who's now my wife down there. And this was all new to her too. And she ended up taking me to the hospital and think I was probably up in the five 600 range. And then that was an interesting phone call to my mother as well. Who at that time, then flew down and did the motherly thing and came down and spent a few days down there with me.

 

Stacey Simms  9:49

I'm wondering though, I mean, my kids, my daughter's in college far away. Then he is a sophomore in high school and we're starting to talk about college and I've told him you know, you can go wherever you want. I'd love for him to stay next year. We're at least in this state, but I doubt that he will. I'm curious looking back What made you want to go so far away? I mean, do you feel I don't wanna put words your mouth I wonder like, did you want to prove something to yourself? Did you just love that school always wanted to go to Florida like why from there's so many great schools in that Pennsylvania northeast corner?

 

Chris Stocker  10:16

The weather? Yeah. Yeah. So I was playing football. I played football my whole life. I was playing football, I kings, I actually left the football team because I had no energy. I couldn't I didn't want to work out anymore. Later to find out that that was diabetes related. And I just said, You know what, like, I don't wanna play football anymore. I just want to go somewhere that's totally different than than where I grew up. I love Pennsylvania. I'm actually back here now. But I wanted to go somewhere totally different. And I started looking at colleges. I'd always wanted to go to UNC Greensboro. I don't know why, but I always wanted to go there. And I started looking online. And one day I was watching a tennis tournament, and Andy Roddick was my favorite tennis player and it popped up that he lived in Boca Raton. So I went on the internet, looked up colleges in Boca Raton, I found Florida Atlantic and I fell in love with their website. So I always used to joke that I have Andy Roddick to thank for meeting my wife. Even though I've never met Andy Roddick, and Andy Radek has no idea who I am.

 

Stacey Simms  11:22

Well, you wouldn't be the first to go to college because somebody either lived in that town or went to that town that you admired. But that's a great story. I love it. I want to talk about the diabetes online community, you were a very big part of this. You still are. But there was this time when there were so many bloggers and we were all just finding each other on Twitter. But I at first like to skip ahead in your story to when your daughter was diagnosed. I think that's such a fear of so many people I know who are adults with type one. But it does happen of course and you do deal with it. Do you mind sharing her story too. When was she diagnosed?

 

Chris Stocker  11:56

She was we're actually coming up on her two years, in about a week and a half year so she was diagnosed on February 12 2019 in the middle of a snowstorm. And that was when we decided to take her to the ER was when we had about eight inches of snow on the ground.

 

Stacey Simms  12:19

Right back to Chris in just a moment Diabetes Connections is brought to you by g Bo hypo pin. And almost everyone who takes insulin has experienced a low blood sugar. And that can be scary. A very low blood sugar is really scary. And that's where GMO hypo pen comes in. It's the first auto injector to treat very low blood sugar Jeeva hypo pen is pre mixed and it is ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give g vote correctly. I'm so glad to have something new, find out more go to Diabetes connections.com and click on the G book logo. g Vox shouldn't be used in patients with pheochromocytoma or insulinoma. Visit chivo glucagon.com slash brisk. Now back to my conversation with Chris about the night his daughter was diagnosed. Had you suspected I mean I, you know I don't wanna get too personal. But

 

Chris Stocker  13:14

the signs were there. And I feel that I had maybe been living in denial for a little bit. It is something that I had thought about every single day from the day my wife told me she was pregnant, that that what if scenario and it was something that I talked about a little bit, but I didn't talk about it a lot because I felt too vulnerable, I guess. So I shared that because I knew I would not be the only one that had those feelings. But when I would see her, she was potty trained. So she was waking up probably three or four times a night asking for water and having to go to the bathroom. And I really started to see a change in how frequently she was going to the bathroom. And then that kind of was going on for you know, a couple of nights. And then just one night, I just had a gut feeling. And I said well let's pull out my meter. Let's check her so you know, of course, she didn't want that to happen. And you know, I can remember just looking at the meter. The number was in the 250s but I just remember looking at the meter and then just knowing and just knew and just being just crushed. So it was it was something that I had kind of mentally prepared for but it's just one of those things I don't think you're ever prepared. You know you think you might be but it's just you know, it was just a crushing feeling. But then the dad and the type one in me kind of just said hey, it is what it is. We just got to do it. And you know we took it to the hospital. I'm amazed by how she handled the entire thing. It was just unbelievable being in a in an ambulance to go from the ER on hospital to the pediatric unit at another hospital. I mean she loved that still talks about it to this day. Really

 

Stacey Simms  14:57

what did she do what she did like she was feeling Okay, and she was excited.

 

Chris Stocker  15:01

Yes. So she didn't really know what was going on exactly our local hospital, which was, you know, a few blocks away, they didn't have a pediatric unit. So it's a system hospital. So they just, you know, put her and my wife in the ambulance and took them to the hospital that had a pediatric unit for her. So she got to watch TV pretty much all day long. She got to play with toys in there. So it was different, you know, getting getting those first round the labs done and putting her into the burrito as they called, it was probably her only bad memory of the entire process. So she definitely still talks about those days, even, you know, she was a month away from turning four. What is the burrito? So sorry, later down on the table to draw labs and freaking out? Yeah, so they kind of, you know, they put like a weighted almost like a weighted blanket over her to kind of strap or in and they just called it a burrito, I guess to make it sound not so terrifying.

 

Stacey Simms  16:00

How long did you stay in the hospital? And then what did you have to do? I assume you know, your you and your wife are pretty well educated about diabetes. So I don't know that you needed much of that. But it's different when it's your child,

 

Chris Stocker  16:09

I would assume? Yeah, it's totally different. And we were in the hospital for about two and a half, maybe three days, I do know that they kind of rushed us through the process. Because when we first went there, I basically just said, Hey, listen, I have type one. I know what it's like, you know, I know what to do. But I don't have a child with it. So I know I need to, you know, relearn some things, and things are going to be a little different. But the, you know, the staff there and the whole diabetes team was very helpful. And really, they directed most of the education, most of the conversations towards my wife, which was something that we kind of asked them to do, because I really, you know, my wife had lived with me for 14 years before that. But my diabetes was kind of just my own diabetes, I didn't ask her to take an active part and help managing if she knew if I was low to give me Skittles, she knew if I was high, I needed some more insulin, but she knew that I counted while I was supposed to be counting cards, but she knew the basics, but really, she needed to start, you know, learning. What is basal? And what is this? And what is that? So a lot of that education was geared towards her. And I think it was, you know, very helpful, not just for her, but also for me, as somebody that was living with it for at that time, I guess it was 15 years, then that there was like a refresher course that I that I needed. Because I was in my I was in my my own habits. I'm in my own ways. And it was it was really good to kind of take a step back and relook at how you know, what is diabetes one on one, you know, what is the right way to kind of do some of these things.

 

Stacey Simms  17:48

I'm picturing that, you know, your daughter has watched you do this, even if you haven't been doing it in front of her the whole time and everything that this is now something that while that's not great, but she can share with her father,

 

Chris Stocker  17:59

absolutely. 100%. And that's exactly how I looked at it was, how can I make this easier for her and just like a parent with anything, my initial instincts were, what can I do to make this better for my child, and it was just instantly that put on a smile for her show her that my diabetes is not a burden on me, it's not something that I don't like doing. So I made sure that when I had to check my sugar, or she, we were going to check our sugar, I would do mine also. And you know, now we share some of those same things. So it's like, oh, when when I have to change out my CGM, you know, my sensors is, do you want to help me do it? Do you want to help me, you know, decorate my my infusion sets and things like that. So we share those common bonds. And that's how we looked at it from the day of diagnosis, as well as Hey, you're like, Daddy, now you and Daddy, we both have diabetes. And my niece was actually diagnosed about two years before my daughter. So that was a whole whole nother thing of trying to you know, help my brother and my sister in law with with dealing with that diagnosis. So, you know, now she shared that with her cousin as well. So it was kind of something that, you know, with her daddy having in it, her cousin having it that that she was able to not. And also she didn't at that time really even know what it meant to have diabetes. She just she thought it was just cool that now she has daddy. So it was definitely the way that we decided to kind of take is to be able to share that bond with her. And that's what we have in common.

 

Stacey Simms  19:23

Do you use the same technology as each other?

 

Chris Stocker  19:25

We do. We do. Now, we did it at the time, but the same CGM and we both use the same insulin pumps,

 

Stacey Simms  19:32

you don't have to answer this but you know when you say to your your daughter and this is what I think we would all want to say to a newly diagnosed child right? It's not going to be a burden. You can do this it's okay to have diabetes. And I think for me as the adult with my son ignorance was a little bit of bliss, right? You know, you can do this it's gonna be okay and it's not gonna stop you. You can play sports, you know, you can. Now they can fly planes, right? You can you can do what you want to do. But for somebody with type one who's lived with it for as long as you have Do you know that it is a burden? Sometimes you know that it is really hard. And I know this is not something you're gonna take, you're now, you know, almost six year old decided to Hey, by the way, you know, I mean these are conversations from they're much older,

 

Chris Stocker  20:10

we've had some conversations I mean, as much of a conversation as you can have with an almost six year old about living a life with diabetes. So we really kind of talked about it in Scituate, you know, take today, for example, it's been snowing for almost three days, we were out in the snow. And I can I already know, as soon as we go to that, in that snow, she's going low, it's just 100% guaranteed every single time. So we had to stop playing in the snow. So we could drink juice. And you know, she doesn't want to stop playing. So we try to you know, just let her know that, hey, just because you know, the other kids in the neighborhood happen, you know, they're still out playing and whatnot, we just need to take a little extra precaution steps here and just sit down and have a juice and you know, we frame it that day, they don't get to have a juice right now, right? You're the one having giggles and juice. So you know, but it's just you know, so we use those kind of, it usually comes up during Lowe's, where we may say like, hey, let's let's settle down for a little bit. Let's not run around or play rough right? Now let's just sit down. And, you know, we'll play a play game of checkers or something just sitting on the couch. So we kind of have those conversations with her, like why she has to sometimes stop doing what she's doing, she can get right back into it. But we might need to take 10 1520 minutes here or there to just settle down a little bit, have a little snack or juice or something like that. But I think about how I'm going to have additional conversations with her in the future. And I've gone back and forth, you know, talking in the mirror how I'm going to handle it, it's probably going to be one of those situations where I have a great plan going in, and it's just not going to go anywhere near how I play it.

 

Stacey Simms  21:50

Um, I do want to ask you a few more questions about your children because you have another child as well. But let's take a couple of minutes and talk about the diabetes online community from a few years back, if you're a longtime listener of the show, you know, we started this in 2015, which was probably the beginning of the end of the like the hybrid if we were to check blogging and that kind of thing. And the whole, you know, I guess what some people would call the Oh g diabetes people, you know, maybe that's when it peaked my non scientific method here. But you were, you know, you were right in there and all of those conversations, and I'd love to know, how did you find the online community? What was your first entry.

 

Chris Stocker  22:26

So I first started blogging or even finding out about blogs back in 2009, I was working for a, I was interning actually at a diabetes supply company. And they said, Hey, we want to start a blog. So I started to write blogs for the company. And then I was like, Okay, this is I kind of enjoyed this. And then I started finding other type one, blogs. And I thought, you know what, I have so much that I want to say, and I felt that I didn't have anybody to talk to about it. Because I didn't know anybody with diabetes, I went to high school with the kid. But I knew we drink Gatorade at halftime of football games. But that was it, we had water in a Gatorade, that was all I knew about diabetes. So I just started writing things that were in my mind that I think I just wanted to get off my chest, I just started writing about them. And I didn't even care that nobody was reading it, I just wanted a place to be able to just share my thoughts. And it just helped me just help my mind mentally just be able to get it out on to you know, typing on the keyboard and just reading it. So that's kind of how I started. And then I can't remember getting my first comment, I got a comment on a post, it was probably after about six months of writing daily. And so I mean, I can't do the math that fast. I mean, I, I was well into 100 posts before my very first comment, and somebody said, Wow, I was going through this exact same thing. And your feedback here really changed my mindset on it. And I'm going to try this and you know, make changes in my life and whatnot. And I just thought, wow, I just changed somebody's life. Like I just changed how somebody thinks about something simply by me just typing on a computer. And then it just that was kind of that first, like, I'm actually helping other people by just getting out the words that are bothering me. And then it just kind of took off. From there. I just started writing daily and just I started meeting other people. You mentioned previously speaking to people on Twitter and a little bit of Facebook back then, but just meeting a ton of different people online, and just writing and writing and writing and writing and just sharing my story. And it was just, you know, I was never very edited in my blog post. And even my wife would always say, Did you know that you spelled this wrong? Or you said this? Like No, because I type and I wrote the way that I speak and it came out that way and it was just how, you know it was I didn't have a you know, a very like a very edited style. And it just kind of, you know, people kind of just connected with it and it was just Every time I would get a new comment or a new share or something it felt it just felt motivating to know that I was helping people by getting those stories out there.

 

Stacey Simms  25:08

It is funny. That's one of the reasons why I love podcasting, because there is no editor for my grammar or my spelling. And I have transcripts now. And those are very difficult for me because I usually we clean up the diabetes language because my transcription software doesn't speak diabetes very well. But I'm not correcting the grammar and the spelling from pot. Yeah, it's really, really interesting. And I'm going to link up your your blog if that's okay. Because I think a lot of those older posts in itself, a lot of residents, I mean, I blogged as well. It's starting in 22,007. And I think two people read that blog, but I've kept it up. Well, I just like you I got so much more out of it right. For me, it was perfect for me, I got I got a lot of help, just mental health assistance for writing it almost like a diary. But it has been in the last couple of years, people have found the goalposts and it's helpful because diabetes issues change, but not really, right technology changes things, but not really,

 

Chris Stocker  26:03

you know, I still get notifications of comments on posts that I wrote back in 2010 2011. And one of the areas and this kind of circles back to my daughter's diagnosis is that I wrote maybe, I think I wrote two posts total about my fears of one day having a child B die, those with diabetes. And to this day, those are still some of my most, you know, most read posts and most commented posts and people to this day still comment or send me emails like, hey, how did you go about this? Or how did you deal with this? And, and it's just, you know, those are things that I wrote, five, six years ago before I even knew I was having a child. And it's still relevant today as well.

 

Stacey Simms  26:43

Well, you're dipping your toe back into social media with, you know, YouTube videos, you're on Instagram, are you podcasting again,

 

Chris Stocker  26:49

I, I am not as of now, but I'm not saying that I'm not going to. It's funny, I did start a podcast, and I recorded two episodes. And my daughter was then diagnosed. So I kind of stopped. You know, I

 

Stacey Simms  27:05

mentioned that when I started this podcast in 2015, it seemed to be kind of like, I don't know, for sure. But from my experience, it was like this high point of activity online for certain a certain group of people. And a lot of those folks have kind of moved on or paused and come back. And, you know, I wonder too, if there isn't just a natural life to some of this old natural burnout to some diabetes stuff. And you've been very open about those kinds of things. Can you share that part?

 

Chris Stocker  27:31

Yeah, absolutely. So once my daughter was diagnosed, kind of everything just kind of went on Paul's it was this is our focus. Right now, this is everything that we want to focus all of our efforts on that I was actually going back to, I was getting my real estate license at that time, as well. So there was a lot, a lot going on at that time. And once I decided to start getting back into writing, I sat at the computer probably 20 different times to start writing about my daughter being diagnosed. And I was just filled with diabetes just all day long, whether it was I was managing my own diabetes, and my alerts were going off, and then it was time to check my daughter's blood sugar and then give her insulin and do her calculation, then do my calculation. And it was just too much that at the end of the day, or the the start of the day, I just didn't want to, I didn't want to think about diabetes anymore. I didn't want to write about it, I just kind of wanted to manage it. And that was it. And I definitely felt a disconnect from the diabetes community. Because I just kind of just left I just I shut down. And I just didn't want to be involved with anything. I didn't want to see posts, I didn't, I didn't want to read people's posts, I didn't want to watch videos, I didn't want to listen to anything, I just wanted to kind of just deal with that. And and it was just, it was a lot at once. And that's kind of what shut everything down for almost a year and a half. And then I started to write again a little bit, and they kind of came back to me where it was, I can remember the exact moment I was writing a blog post and my low alert went off and within five minutes, my daughter's low alert went off. And then my Omni pod alerted me that I had a low reservoir. And my daughter's went off about 15 minutes later that hers was being changed that night. So we were both having a low both theater pots change that same night. And I think that I actually had to change out my CGM that night as well and it was just a complete overload and I said are stopping again and I can't deal with this I need a mental break from from diabetes and I need to be at my strongest in order to be that you know role model and example to my daughter and I felt that let her see me get frustrated with with an alert or an alarm and and be like oh, I have to change that tonight or hi we have to do this or I'll have to drink a juice. I tried to never let her see that and never let her see that. There may be some frustrations that come with living Diabetes,

 

Stacey Simms  30:01

I'm hesitating, Chris, because Far be it from me to armchair psychologize anybody, but I want to plant this in your brain. And I agree six years old is not the time to do that. But I hope as she gets older, you do allow her to see some of those frustrations. And again, I'm not your doctor, or psychologist, right? I think if you were my dad,

 

Unknown Speaker  30:22

I hope this really is not at a place, I'm such a nosy person. Mom, I

 

Stacey Simms  30:27

become that we're my dad, to share those experiences, you know, when somebody shares the bad as well as the good, it just makes your bed feel not so bad. So when she's like, 10 1112, you know, those are the times when you guys I know, I know, it's in your future that you're going to share all of that, and she's gonna appreciate it so much. But I I agree, because I remember with Benny, you know, at six years old, you're just, you know, it's like, you know, you gotta brush your teeth. So you don't, you know, you don't get carried away. Everything's fun.

 

Chris Stocker  30:55

Yeah, I mean, it's, you know, it's a struggle at times, just to every three days, when a new pod has to go on, you know, she has to be watching either a cartoon or using the iPad, some some type of distraction. Now, we don't plan on doing that forever. And we've already kind of slowed that down a bit of what we let her do to kind of distract her from it. But I know that that's going to change in the future. And those are definitely, you know, some conversations that I would definitely have with her about the frustrations and stuff. But I think my thought process behind it is that if she sees that I'm getting frustrated of having to put on a new ami pot or put on a new Dexcom that she's going to think that it's so you know that she's going to put up by force who and and it's just something that I know will come one day, but I'm just trying to push it off as far as far

 

Stacey Simms  31:44

and I think you're very wise, because I will share with you that Danny ran away from insets. He had to bid pump his whole life. And you know, every three days, you're teaching the inset, and we tried everything Chris, we did, you know, numbing cream and ice cubes and rewards and he ran away from them. It was a struggle until about age eight or nine. And then it amazingly got better. And now he does everything himself for the past, I want to say three or four years even. And it's and then some kids start doing everything themselves very early. Right. I think when you're diagnosed tiny the trend that I noticed anecdotally is that it takes them longer just to be completely independent, because that's how they've been taught. So I don't take that iPad away before she's ready. She'll let you know when she's ready.

 

Unknown Speaker  32:26

You're right,

 

Stacey Simms  32:27

she will, it'll be fine. And I will tell you one funny story. I don't know if I'll keep this in because I'm talking too much in this interview. But we were laughing the other day because I used to let Benny say what we called potty words when he changed his incident. So right, we put it on and he could be like, oh poop or whatever. And I said to him in the kitchen the other night, he came down to change. And I said do you want to yell some potty words? And we were hysterical of the thought of thinking of my preschooler yelling real curse words, like Could you imagine if you know what he thinks of potty words today, so you can fill in the blank on that.

 

Chris Stocker  32:58

I like that. I like that idea. Actually, she will probably enjoy.

 

Stacey Simms  33:03

I think we would all like to yell some potty words when we're doing stuff.

 

Unknown Speaker  33:06

Absolutely.

 

Stacey Simms  33:07

Let me ask you about your your second child because your wife was pregnant, which had to be so stressful when your daughter was diagnosed during that time. And you had, as you've said, you'd already been nervous about any of your children being diagnosed. Again, I feel like I'm being very nosy. But What went through your mind at that time.

 

Chris Stocker  33:25

So initially, I mean, my initial thought was the stress that was going to be put on my wife and her being pregnant at that time, and making sure that she was okay with it, and trying to comfort her as much as possible and try to take away as much of the stress that I could possibly do, you know, from a mother, and, you know, knowing that she was pregnant, we knew there were chances. And it was just a decision and conversations we had throughout our relationship. And before we were married, we're gonna have kids no matter what it's what we want to do, and we're not going to let the thought or the chance of something stop us from doing anything. And that's kind of our, our thought process in life in general. So we knew that we were going to, you know, have wanted to have a second child. And we actually were scheduled to find out whether we were having another daughter or not. On February 13, I think and my daughter was diagnosed on the 12th. So it was actually in the same hospital. My wife left and went, you know, down the hall and oh, my God on the elevator and went like two floors down. And, you know, she did what she had to do there and then so we were you know, planning on having this big celebration to find out if we were you know what we were having and next thing you know, we're we're in the hospital for a totally different reason.

 

Stacey Simms  34:48

I gotta be honest to Chris, I love talking to dads of kids with type one because we hear so much from moms, right, so many of the bloggers and the writers and podcasters like me Moms. So let me ask you as a dad, now not as just a person with type one, but as a dad of a child of type one. What advice would you give newly diagnosed families, I mean, you're almost you're two years into this. Now you know what worked.

 

Chris Stocker  35:12

I would say that just being open, especially with you know, your spouse about how you may be feeling about it, I think a lot of times that the reason why we don't hear dads speak out too much is because they want to be the backbone, they want to be the strong one they want to, to not show that they're upset and show their feelings. And for me, I've been open with my wife, me and my wife, we've had conversations, we've cried together about it, we've talked about things that I let her know, my fears that I may have over things about it, it has helped tremendously, because there are times where I just say, like, Hey, listen, I need a break tonight, I can't do this, I've had a bad diabetes day, I'm stressed out by this, I'm just getting upset about it, I need a break. And that open communication has really helped us become an amazing team. And quite honestly, my wife almost entirely manages my daughter's diabetes. At this point, I cannot express like how grateful and like, just proud and I'm amazed by how my wife has taken this on and have she just tackled this head on. And I mean, she's pretty much almost managing my diabetes at this point, telling me how many carbs are in my meals and this and that. So going back to being the dad is that I just think that it's okay to you know, you just have to be okay with having those uncomfortable and vulnerable conversations and, and just know that it's for the better good, like, let your guard down, let it out, it's going to help that you don't have to just be you know, the strong one, you know, every single day in every single situation where it is okay to just let your fears out. And if you need to talk to somebody, talk to somebody find somebody that you know, you may have something in common with and just get it out and talk it out. And it feels so much better. Even having diabetes for 1415 years before she was diagnosed, I reached out to other dads have type one kids that I knew from meeting in the community and had, you know, conversations with them, like, what do I do from here? Like, I know how to manage mine, but like, What do I do? How do I do this? How do I tell her this? How do I explain this, and that helped me tremendously. And that's part of that community feeling and knowing that, you know, for all those years, I was, you know, putting into the community to be able to reach out when I was the one in in need of help. And it was great to have that community there to let me know, like, You got this.

 

Stacey Simms  37:40

I'm curious, if anything in the last two years with your daughter has surprised you any of your reactions to things or anything that she's done, you know, you were not six years old or four years old, when you were diagnosed, did anything surprise you about her diagnosis or your experiences with it or your reaction?

 

Chris Stocker  37:57

I am not kind of glued to the Dexcom as much as my wife is. And my wife is with my daughter a lot more during the day than than I am as well. But one thing that my daughter does is she knows that if she's going to be you know, she's playing upstairs in her room, she needs to now take her phone with her or her Dexcom actually with her and she will let us know. I think she was only diagnosed for maybe three or four months, the first time where she said to me, daddy, my knees feel wobbly. And my initial reaction was, first of all, how do you know what the word wobbly means. And second of all, let's get the meter out. And let's check real quick. And I can remember we were in target which another place no matter every time I go in there, it ends up in a low, but we are in target and she said her knees felt wobbly. We checked her she was 41. And I just remember picking her up and sprinting to the front of the store and just finding the first juice I can find and just said just start drinking and I remember her asking about paying for it or something. I'm like drinking it don't you don't have to worry about that. I'll figure that out. Just start drinking. So that was probably a surprising moment to me of her letting me and this was before she had Dexcom. So that was very kind of surprising moment to me that she used the word wobbly and she knew that she fell off. So now she does that quite often now where she she says I feel low. She'll Look at her Dexcom and just randomly I'll just hear her scream out 125 or something. Okay, I guess that's what her number is so low that she she has taken that on as you know, she's kind of proud, not kind of she's extremely proud to have diabetes. You know, she in her classes. She talks tells people that she has diabetes and whatnot. So she definitely surprised me of how proud she is to wear it. That's awesome. That means you guys are doing an awesome job as parents. That's something we actually did kind of talk to her about that she doesn't ever have to be ashamed or, you know, she doesn't have to be scared to tell somebody that she has diabetes. In fact, you know, because my philosophy has always been I want to tell you that I have it because in case something Goes go wrong. I want somebody around me to know

 

Stacey Simms  40:04

this before I let you go, you have been posting you know more on Instagram and you're really getting back into it. And I noticed you posted a lot about your daughter and her reaction to the virtual friends for life conference. And I, I was part of that. And I gotta tell you, I wasn't sure what to expect me this isn't a commercial for friends for life, even though we love them. But I was stunned at how good it was to connect even virtual with people. You know, we're all stuck at home, we can't get out to meet up. But I loved that conference, did your daughter have fun? There was so much for kids.

 

Chris Stocker  40:35

She had an amazing time. I mean, she still talks about it almost every day. To this day, she talks about the different events that were going on, she talked about playing bingo with with the guy from Toy Story. She talked about the all the animals that are Parker Ranger that was there. And I mean, she loved it, she loved seeing other kids and hearing other people talk about it. And we were planning on going, you know, this year in 2022 it so it was something that she already knew was going to happen. And you know, the day was over, she was she started crying. She was so sad. She couldn't wait till the next one. And it was just, it was a you know, it was life changing to her because, you know, she had only known me and her cousin that had and a few other people that she had met that had diabetes, but to be opened up to this world of all these other kids that were living with it and we're all sharing their different CGM and their different pumps and seeing a different perspective other than just her life and you know, my life with it was just absolutely amazing for her to experience that even virtually, it was just amazing how smooth it went. And and all the activities that were there for the kids. Yeah,

 

Stacey Simms  41:50

I mean, I gotta be honest with you, I didn't put a lot of time because I figured, well, you know, I'll do my speech. And I'll watch one or two, the research updates. I was hanging out in the social hallways, you know, with my mom, friends, it was great. I was I thought it was a very well done. And so we'll put a plug in because they've got the march one coming up. And we put a link in the show notes. Is there anything else Chris that you wanted to push people to or to you know, to put all your links to follow or anything that you've got coming up that you wanted me to make sure to mention,

 

Chris Stocker  42:14

people can follow me on on Instagram, it's just life of a diabetic, it is a newer account, because I am trying to keep it separate it from a personal Instagram account that I had previously. And it's just just to keep things simple and clean. I've just kind of started a new one. And I am putting out weekly YouTube videos now so they can check that out, you know, with the link in the in the show notes, but I just hope that you know, I can continue to help people and share my story and also my daughter's story. And as long as it helps one person, I feel that all the work and effort that goes into it is well worth it. That's awesome.

 

Stacey Simms  42:51

Well, no doubt you'll be helping other parents and other adults with type one. Chris, I can't thank you enough for coming on. It was so much fun to talk to after connecting online for all these years. I really appreciate it.

 

Chris Stocker  43:00

Absolutely. I appreciate you having me on.

 

Unknown Speaker  43:07

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  43:13

More information including Chris's YouTube channel and his Instagram and all that good stuff will be in the shownotes. And that is always on the episode homepage as well. So if you're listening in an app and it doesn't show you what you want, just go to Diabetes connections.com and find the episode should be very easy to do.

I should let you know he mentioned it went by quickly when he was talking about friends for life. He mentioned the Toy Story guy playing Bingo. what he's talking about there is john Ratzenberger who people might remember as Cliff Klavan from Cheers, but who has been a voice of a character in every Pixar movie, his son lives with type one. And Tom Karlya who's a very big part of friends for life, and also the Diabetes Research Institute. He knows him through his work through the DRI together. So Tom brought john to friends for life this year, which is really, really cool. And as I mentioned, they have another event coming up in March and I will put a link in the show notes on that.

Tell me something good 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 there was share. I think we had Dexcom for two years, almost two years before Cher was added as a feature. So you know, we know using Sharon follow makes a big difference. To this day Benny and I set parameters about when I'm going to call him how long to wait, you know, that kind of thing. It really helps us talk and worry about diabetes less. It helps if I need to troubleshoot with him. I love this you can see what's happening over the last 24 hours and not just at one moment in time. The alerts and alarms that we set help us from keeping the highs from getting too high and jump on lows before they're 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.

Our first tell me something good story is one I wish I had jumped on myself. But I read about it at diabetes mine and Mike Hoskins always does great work over there. And I had to share it with you. Dr. Drew Weissman at the University of Pennsylvania is one of two key researchers behind the science used to develop the first COVID-19 vaccines. And he lives with type 1 diabetes. He was diagnosed more than 50 years ago, he didn't announce that he had type one, you know what he was in the news for this vaccine. But apparently some eagle-eyed folks by the photo of him getting his own COVID vaccine shot and they saw that he had an insulin pump on and I'm looking at the photo, as I'm telling you this, he's getting the Pfizer vaccine. And you can see it looks like a Medtronic pump on his waist. I will link up the story from diabetes mine, which is a great conversation with him, including photos, and Great job guys getting that done. Maybe we can grab Dr. Weisman and get him on the show.

Our other bit of good news comes in the form of more books for very little ones with type 1 diabetes. We've had folks on the show before who are authors of children's books, which I think are a really vital part of young children's care when it comes to type one. I know reading books like this to Benny, and bring these books to preschool and kindergarten and really willing to elementary school helped give us friends a good understanding. And you know, just seeing yourself in a book is a wonderful, wonderful thing. So I just want to mention a couple that are newer out there.

The Adventures of Captain Lantus is one that I have seen a lot of this focuses on seven year old Maxs, who has type 1 diabetes, and it's kind of a fantastical adventure, because everyone in beta town has type 1 diabetes. So this is a real fantasy story and very cute stuff. Brandy in our Facebook group in Diabetes Connections, the group published her T1D toddler book, it's called Little shots for little tots. And it is also very cute looking.

And one that I think is actually a pretty important one is called when I go low, a type 1 diabetes picture book. This is by ginger Vieira. And Michael Lawson. And we have talked to both of those folks on the show about other books that they have put out there. But this is a book that I wish I'd had when Benny was younger. The other ones are great stories and always fun. But this teaches about when a child is low, what does that feel like? What How do you articulate it? You know, what should you know about it, it's a great way to get young people with diabetes to talk about what low blood sugar feels like, and to help explain to their friends and friends, families and kids at school and that kind of thing. So I will put the links to all of these guys. They're all on Amazon. And I'm sure they all have their own author pages as well.

But there are so many great books about diabetes right now, if you've got tips, or you'd like to hear more, I had thought about in the past doing book reviews, but I don't have the time. So if that's something you're interested in, let me know, we could have an ongoing segment or something. I'm gonna be looking for new Tell me something good stories in our community. So please keep an eye out for that. I love to ask in the Facebook group. And you can always give me your good stuff.

Before I let you go quick reminder, if you are a podcast person, if you are thinking of starting one, if you have one, I have a podcast course it has nothing to do with diabetes. This is all about podcasting, and learning about podcast sponsorship in an ethical way, in a way that makes sense for small businesses. You know, I'm not Amazon podcasts here, or Wondry, or Spotify. This is about independent podcasters who want to serve their communities and make some money, enough money to cover the costs of the podcast or perhaps make a living at it. So I've launched a new course there's a free webinar coming up, I'll put all the information in the show notes.

And if you're just here for diabetes, which of course I think 99% of you are we have another classic episode coming up later this week, we're going to be talking about spare arose. But this isn't any spare a rose, informative interview. This is my very first game show that I did here on Diabetes Connections and it features some very familiar names, some very silly stuff, and a couple of mistakes along the way that we left in. So that should be fun, and that should be out on Thursday.

Thank you so much to my editor John Buckenas from audio editing solutions. Thank you so much for listening. Until next time, I'm Stacey Simms. Be kind to yourself.

 

Benny  49:21

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

Feb 4, 2021

Ernie Prado was diagnosed with type 1 as a teenager and is now a project engineer at NASA. He has a terrific story and it's not exactly what you'd expect. Ernie wasn't a diabetes superstar who lived a perfect diabetes life all along. We're so grateful he was generous enough to share the real story!

This is our first in a new series of "Classic Episodes." In addition to our regular Tuesday episodes, we'll bring you an additional episode like this every Thursday. What’s a classic episode? It’s an interview that aired a long time ago but isn't dated in a way that takes away from the experience. We’ve been around for a while, so there’s a good chance you missed some of these back in 2015 or 2016.

Stacey first spoke to Ernie Prado in 2016 and he's now the Project Engineer for something called the Super Guppy. He says it transports outsize spaceflight cargo in support of Artemis which will take the first woman and next man to the moon. Check it out here

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

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Episode Transcription:

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by Inside the Breakthrough, a new history of science podcast full of digital stuff with quite a few laughs along the way.

 

Announcer  0:15

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:21

Welcome to a Classic episode of Diabetes Connections, something a little new this year. But as always, we aim to educate and inspire by sharing stories of connection with a focus on people who use insulin. I am your host, Stacey Simms, and I am really glad that you are here.

So I said something new starting this week in 2021. In addition to our regular Tuesday episodes, I'm going to be bringing you an additional episode like this on Thursdays. So what is a classic episode, it is an interview that has already aired a long time ago, but it is still what we would call evergreen. It's not dated in a way that takes away from listening to it. Now we have a lot of episodes. We've been around for a while. So there is a good chance that you missed some of these interviews back in 2015, or 2016. And these are really interesting, fun people and I wanted to bring their stories to a wider audience.

This week, you are going to hear the story of a NASA engineer, a rocket scientist who lives with type one. Ernie Prado has a really great story. But it's not exactly what you would expect. He wasn't a diabetes superstar who lived a perfect diabetes life all along. And I'm really grateful that he was generous enough to share the real story you will hear from Ernie in just a moment.

But first, these classic episodes are brought to you by a brand new podcast. And this is pretty cool to have a sponsor who is also a podcast. So let me tell you all about this. This is inside the breakthrough. A new history of science podcast full of Did you know stuff like did you know Henry Ford and Thomas Edison were really good buddies. They even work together on an electric car, and it still failed. Episode One dives into stories including Archimedes yelling Eureka while naked in the streets and Alexander Fleming's discovery of penicillin by accident inside the breakthrough was created by SciMar SciMar is a group of Canadian researchers dedicated to changing the way we detect, treat and even reverse type two diabetes.

This show is historical wisdom mixed with modern insight with quite a few laughs along the way. I've listened to it. It's a great show really high production value, great host and great information search for inside the breakthrough anywhere you listen to podcasts and at Diabetes connections.com.

It has been almost five years since I first spoke to Ernie. What is he doing now? He is the project engineer for something called the super Guppy. It sounds funny, but this thing is really amazing. I'll put a photo and a story behind it in the Diabetes Connections Facebook group, Ernie tells me it transports outsize spaceflight cargo in support of Artemis, which will take the first woman and next man to the moon. So pretty important job really interesting stuff. And I think as you listen to this interview, you'll see that Ernie is really where he wants to be. Please remember, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. So here is my interview with NASA's Ernie Prado from June of 2016.

Ernie, thank you so much for making some time to talk to me today. I really appreciate it. Yeah, before we get to the rocket science and NASA and everything that's going on now, take me back to the beginning you were diagnosed with Type One Diabetes at the age of 15. Did you know at that point, that you wanted to have some kind of career with the space program?

 

Ernie Prado  3:55

Oh, yeah. So my life goal, I guess when I was younger, I was always drawn to space and airplanes. And my mom said, I cry if I didn't watch Star Trek when I was like four. So I wanted to be an astronaut. And before that I wanted to be a fighter pilot and fly f 18. So I was always drawn towards this and my goal was to end up in space.

 

Stacey Simms  4:18

Well, you were diagnosed, as I said, age 15. The diagnosis was about, let's say 15 years ago, you're you're 29 you're 30

 

Ernie Prado  4:26

Yeah, it's half half my life now. Yeah. Um,

 

Stacey Simms  4:31

what did the doctor tell you at that point was that you have type one. And you're never going to do these things that you always wanted to do? Or was it a little bit more kind?

 

Ernie Prado  4:41

So actually, the past few months, I've been trying to figure out the exact date I was diagnosed just because, you know, I've been reading about folks and a lot of folks have a die of diversity. And I kind of was trying to figure out mine. And I've been thinking about that actually contacted the hospital. And unfortunately, I don't have the records. More, but I don't remember the doctor saying, you know, you're not gonna be able to do a lot of this. I feel like I've encountered more that, you know, outside of maybe the medical community. So I've been lucky enough to take part in a medical study from with FA and utmb about trying to get folks of chronic conditions like diabetes into space through companies like Virgin Galactic, and XCOR. And so I got to go into centrifuge. And that's pretty cool thing for diabetics to do. I did encounter some resistance when I was trying to become a flight controller. And so at the time, I had other projects coming up, so I kind of, you know, let that go to the wayside. But I haven't stopped me from doing most of the things I wanted to do. Maybe a few, but I try to find ways around it and still do them anyway.

 

Stacey Simms  5:52

Yeah, and I want to talk more about that. I'm just trying to kind of figure out what this was like for teenage you. Because that's a tough time anyway, and to be diagnosed at age 15. When you're hopefully, you know, you're busy with a lot of other things. Do you remember what it was like at that point in your life to make that kind of change?

 

Ernie Prado  6:10

Yeah, it was really hard, actually. So I came to accept that a lot more about the time I was 18. I was about three years after those first three years were a little bit difficult. Because, unfortunately, and you know, I love my mom to death, but she kind of told me not to talk about my diabetes, and to not let people know I had it. And over the years, I've realized that was a little bit, not probably not the best method to approach it. And so I dealt with it on my own a lot or just with support at home and from my family. You know,

 

Stacey Simms  6:44

I'm sorry to interrupt. I've heard that from other people that at, it seems like a better idea to try to avoid discrimination, ignorance by kind of just keeping it to yourself, is that maybe what your mother was trying to do?

 

Ernie Prado  6:59

I think so. And, you know, I think she did with the best intentions. But it was, it was really difficult to not talk about something that I considered So in general, about myself, because it was kind of thrust on me and said, hey, you're earning now you're diabetic, and, you know, it was through no fault of my own, it just happened. So it would be the same thing, as you know, having like a really strong interest in you know, like space, I wouldn't be able to hide that. I didn't want to hide the fact that I was out back. When I got to college, I started telling everybody and you know, I've continued that. But it was difficult, you know, to try to explain why I wasn't eating certain things around my friends, or why couldn't go out sometimes, or why I had to stop playing football and wrestling and all that. So it was a, I'd say it was a pretty good difficult time in my teenage years.

 

Stacey Simms  7:49

And you had to stop playing sports was that because of I'm gonna just guess, because your mom was not comfortable? Or was it something that happened?

 

Ernie Prado  7:57

Yeah, partly that. And my first doctor, I think, you know, in the abundance of caution said, you know, you might want to take it off for a little bit and learn about your diabetes and how to manage it. And it might have been understood as he shouldn't be playing sports anymore. But depressing. Yeah.

 

Stacey Simms  8:18

Well, okay, so you get to college. You're you. You're telling everybody you have diabetes, what you study in college, were you now going ahead with the engineering with the career in space program?

 

Ernie Prado  8:31

Yeah, absolutely. So when I got to college, actually declared my major before getting except for as soon as I got accepted, I believe. And I chose to pursue a double major in aeronautical sciences and engineering, and then mechanical engineering. Because I figured, you know, if maybe right now, I can't fly, or do what I want. I'm going to get involved somehow at NASA. And luckily enough, it ended working out. And I kept my majors throughout. And I tried to add a minor and do some pre med stuff, but I ran out of time and money, so I didn't get that.

 

Stacey Simms  9:03

And were you able to go to work for NASA right away? Where'd you go to work? Um,

 

Ernie Prado  9:08

so yeah, I was very fortunate. I began working at NASA as a co op at the age of 20. So it was my sophomore year in college, and I've been here since. So it's been about eight and a half a while on this cluster nine years. I've been out here. And so full time for about a little over five years now, though, for the first few years, I went between school and working here at Johnson Space Center. And I think in total of my college time was about a year and a half out here. So I really got my degrees in about three and a half years. Although I was in Davis for five years.

 

Stacey Simms  9:39

What was it like? And maybe this moment happened when you were as you said, you were 20 and you went to work there but you're still in college, or maybe it happened after? What was it like when you walked into NASA and realized I am going to be here, at least in this capacity.

 

Ernie Prado  9:55

So I'm kind of smiling like I believe right now. Remember that first day I mean, I'd never been to Johnson Space Center before, you know, being hired here. I've been at Kennedy Space Center with my dad, that was my graduation gift from high school, he took me there and in his big truck, and we tried to see a launch of, I believe, is STS 114, which was returned to fly and Stephen Robinson was going to launch that mission, which he was an Aggie from UC Davis. And that's where I was going to school. Then hurricane Ernesto roll through, me and my dad are both named Ernesto, and it hit a lightning tower. So they delayed the launch, and I didn't get to see it. But then, you know, a few years down the road, showing up here and saying, Man, I'm walking the same like ground, the astronauts have walked in flight controllers, and all these people in history. It was this really cool sense of I can't believe it. And I still kind of get that pretty often. It's a really cool job.

 

Stacey Simms  10:55

It's so amazing when you get to do the things you've always wanted to do. That's a great story. I love hearing that. I was reading an article that the writer and author Moira McCarthy wrote about you more has been on the show a couple of times already. And she talked about I guess you told her, there was a point at which you realize that, you know, diabetes was something that you needed to kind of pay more attention to, during your time at NASA. Can you tell me a little bit about that?

 

Ernie Prado  11:29

Yeah, so I guess that happened. Because I was working at the NBL, which is the Neutral Buoyancy Laboratory. It's our big environment for it was a gigantic pool, 6.2 million gallons. And it's the environment where we train astronauts at a spacewalk. Typically, if you're a co-op, in that building, you as a guest, at the end of your rotation, you get to dive in this big pool, which has a mock up of the space station in it. So it's this amazing, cool, cool thing to do. And my A1C was at 13.9. so incredibly high. I wasn't taking care of myself, just because I was stressed at school and more focused on getting good grades and kind of in a, I knew I had to diabetes, and I couldn't get rid of it. But I guess, and even though I told people, I wasn't accepting it, so my mindset was, well, you know, if I don't think about it, I don't have to deal with it. And that was a very poor mindset to have. So once they told me, Well, you know, your sugar is not controlled, you're not gonna be able to dive in this pool. I was, it was kind of a wake up call. And I was going to Well, that's a real bummer, because I don't know if I'll ever get to be here again. Or if I have this opportunity again. And so unfortunately, I didn't get to dive in the pool. But I had a very cool boss, he said, Well, you're still scuba certified. And although the medical folks won't sign off on you to do this, you can still snorkel the pool. So that's exactly what I did. I had my snorkel and I got to go about six feet deep in a 40 foot deep pool, I would have loved to sit on the floor and have my UC Davis flag. But, you know, I still got to hover above the mockups of the Space Station. And actually, there was two astronauts in there when I dove, I think it was Lincoln and Patrick, from STS 130. And I got to see them practicing for their spacewalk that they would do. And then later on, when I was back at school, I got to see them through the spacewalk in space, and I was going, I got to be in that tank with them. So I got I still got to experience it, luckily. But that was the point where not taking care of myself almost hindered something really cool that I could have done.

 

Stacey Simms  13:29

Okay, so I have a dumb question for you. They learn to spacewalk or they practice spacewalk in in a pool.

 

Ernie Prado  13:35

Yeah, so it's interesting, you want to think that you learn how to do space walking in a pool. When you're in orbit, you're in microgravity. And you're basically falling at the same rate as gravity, so you kind of just float. And so what the pools can simulate is the weightlessness. What it doesn't simulate is the resistance to movement. So in space, there is no atmosphere. So you can move very easily with very low friction. In comparison to work in a tank, you know, full of water, you have a lot of friction, when you try to move, it's kind of like when you extend your arm and try to swim in the pool. It's very difficult to do. So you can't simulate that, but the weightlessness portion you can. And they do that by attaching weights or foam on to the spaces that are in the pool, and you become neutrally buoyant, hence the name of the laboratory. So you don't sink in, you don't float just kind of hover there in one space and water. And so you actually can't even swim. If you can translate along the mock up or along the space station mock up with the hand rails on like you would on orbit. But if you need to go from one location to another, and you don't have anything to grab onto divers have to come and move you.

 

Stacey Simms  14:40

Wow. That's amazing. What made you decide Do you remember when you were younger? You said earlier your mom said you got upset if you couldn't watch Star Trek at age four. Okay, first of all next generation or original Star Trek? Very important question,

 

Ernie Prado  14:55

I believe, I think next generation but I like them all. Now. And when they come on, I will watch them. So I'm a big fan. Anything space related? And I'm in love with.

 

Stacey Simms  15:07

It's funny but but what would you remember what got you really excited about it as a kid? Was there anything you can think back on and say that, you know, you just really wanted to go into space? We were fascinated by the planets. I'm always curious what, what sparks a passion in someone?

 

Ernie Prado  15:23

So I feel like that's the hardest question to ask. And it's typically one of the ones that is asked, because it is an interesting thing. But you know, and you always hear the folk folk say, I just got the space bug, and it's kind of like this thing that just happens. So I do remember loving planets, loading stars, loving spaceships, is kind of everything about that. I'm not sure exactly what did I just think I was fascinated. There's one moment that kind of stands out to me, that was pretty neat. And it was this. eight and a half by 11, kind of photo of the first few shuttle astronauts are john young and Bob Crippen, and they were in their orange pumpkin suits. And I just remember looking at that, you know, at the time, I drew on the back and wrote my name, and like pink highlighter, and going, Wow, these folks are really cool. They get to go into space. And it didn't really dawn on me just how cool their job was, for some reason that picture always stands out in my mind. And then, you know, at 21, about a year after I started working here, I actually got to meet john young and shake his hand. Oh, wow. And, you know, so he was the commander of the first shuttle flight. But he also flew in Gemini, and then Apollo and he walked on the moon. So I shook the hand of a Moonwalker. And then that kind of like, is what threw me back to that memory of that of that picture going, whoa, that's really cool.

And, you know, I think my dad probably has something to do with it, because he was in love with the shuttle program. And he told me about, you know, driving loads in his truck over to, I think, Edwards Air Force Base and Palmdale when they were building enterprise, which was tested shuttle for kind of clarity, and never flew into space. But it did the approach and landing test, and he has pictures of it, you know, back before the real shuttle ever flew. And then I remember asking him, did you ever think you'd have a kid that worked for NASA? And he said, No. Probably some of his interest rubbed off on me.

 

Stacey Simms  17:15

That's great. You mentioned earlier, a couple of things I wanted to go through. You mentioned that you were in a centrifuge. Yeah. Tell me about that. What was that was that for testing. And I mean, that's just that's one of my nightmares, to be honest with you. So tell me all about that.

 

Ernie Prado  17:30

So that was a really awesome experience that happened about three years ago, the commercial space tourism industry is starting to come up, it's still very young, but they need to do your research on how a more average person will fare in the environment of elevated g loads and weightlessness. And so they need to gather data right now, you know, most of the folks that go up into space are I consider them superhuman, these people can take all kinds of abuse, and they're in peak physical health. But that's not everybody that would be interested in going in space. So as they start to open up this market, folks have back problem and lung issues and diabetes and heart problems. They want to understand how they will react to the forces and weightlessness and the stresses that it puts on their body. So one of my friends sent me a link that was saying that, you know, recruiting folks with these kind of conditions, to see how they will fare and I was like, amen. So I went and applied. And before even getting selected, they said, these are the weekends that you would come Are you available, I went and bought my tickets, before I was even approved. And so I showed up to the doctor for my physical, and he goes, Okay, well, you're good to go. And I said, often he goes, what we can do on goal is, like, already bought tickets, and the doctor just looked at me incredulously and goes, what you didn't know, you'd be if you'd be approved? And I said, Well, I love Southwest, because you can still use those funds towards another flight. He goes, Okay, well, you get to go on that weekend.

So I flew out to Pennsylvania, and it was the NASCAR facility. And this is like, a really incredible facility where they train pilots, you know, how to survive these incredible maneuvers that they perform, and jet aircraft and, you know, folks that are hoping to go to space and just training for a variety of things that includes stresses on the body. So they stuck me in this centrifuge. And I had another participant there with me, who was a former F15 pilot, which is just the coolest thing ever. And they subjected us to the flight profile of the XCore link and the Virgin Galactic spaceship two, or one I believe at the time. And so I think I peaked at about seven and a half G's for about 15 seconds or so. But you went through the profiles and got to see how it would be the experience of spaceflight. And so they put you through the asset and the decent, not so much the weightlessness portion, but it's very interesting to see just how much it affects you. My sugar levels were good, but I was so tired because you have to flex your entire body to prevent from blacking out and there's specialized breathing techniques to keep kind of pressure in the lungs and just to maintain how Consciousness. So luckily, I had a very experienced person there with me who taught me, you know, this is how you how you hold your breath, or this is how you flex all your muscles at once. And I did, they seem to think that I did very well. And it was a really cool enjoyable experience, and a video of it and pictures and probably something that I'll never forget, I was just so neat.

 

Stacey Simms  20:19

Were they very interested in your blood sugar particularly did they measure that throughout?

 

Ernie Prado  20:24

So I measured it before and after, you know, a few times during the day. I didn't have my CGM at the time, I didn't have it available to me. But I wasn't worrying because the needle kind of hurt a bit. It was one of the older ones, just painful. So I kind of was avoiding it. So I did the finger pricks. And yeah, my sugar levels maintained pretty well, they said, you know, keep a little bit higher than normal. So that way you don't tank and so I think I was staying around like the 170s or so. But it didn't affect me at all. And I think I was playing around going that this was the first instance of an insulin pump going through that kind of G load. And it probably should have told because

 

Stacey Simms  21:00

that was my next question. Did you do you worry your pump during

 

Ernie Prado  21:03

this? Yeah. And I didn't capitalize on it.

 

Stacey Simms  21:07

What kind of pump? Do you Where did you were at the time.

 

Ernie Prado  21:10

So at the time, I was wearing my Medtronic, and I think it was the 720 paradigm. And it performed pretty well. I mean, I still have the same pump right now it's lying on my counter, because I’ve switched to a Tslim. But it's survived it just fine. And it performed perfectly after that. And apparently during. So that actually would probably would have provided some really cool data to that team. And I just didn't make the connection at the time, unfortunately.

 

Stacey Simms  21:39

Well, you had other things to think about. And it's interesting that they didn't ask I mean, that's, you know, that's just one of those things where they're, they're studying people with diabetes. You know, I would assume they looked at all of that, but the upshot was that you were just pretty much really worn out.

 

Ernie Prado  21:51

Yeah, I was, it was, I was surprised how tired it was. Because I think throughout the it was two days, and I think throughout each day, maybe 15 to 30 minutes of that day, we're you know, the elevated g loads. And I went home and or to my hotel, and I just asked all those exhausted because you don't realize it but you're working out every single muscle in your body for that short timeframe. And it actually takes a lot of energy others. And you know, Bobby, the guys that said that you eventually get used to it, you know, once you're fighting jet, and you were a GC to help put pressure on your body, and it helps do some of that work for you. But we didn't have any of that equipment.

 

Stacey Simms  22:31

You talked very early on in the interview about flying about I think you said flying F18s. Is that something that you would like to be doing? Or is that something that you have done?

 

Ernie Prado  22:40

I've never gotten to fly an F18. So that's a military jet that the Navy uses, you know, as one of their fleet. And so that's like a dream of mine still at this point. But you know, I mean, even any other military jet would be incredible.

 

Stacey Simms  22:58

Do you fly? I mean, I dumb question. Are you do you have a pilot's license? Do you fly at all?

 

Ernie Prado  23:03

I don't. I've gotten some stick time before on several. What are they called? The word is escaping

 

Stacey Simms  23:12

like a simulator.

 

Ernie Prado  23:14

And then I've flown simulators I've even flown the shuttle simulator. That was a lot of fun. But, like so in college, or the stick time on a Cessna 152 or 172. So they're single engine, you know, planes basically. And so they're they're not advanced, like, you know, the jets that fly like that. So I've gotten to do that. I am fortunate cam and gotten a pilot's license just because a it's really expensive. It's several $1,000 that I just haven't had to put towards that. But eventually, I'd love to do it. You can get a a pilot's license, private pilot's license, there we go. That's what I was looking for. As a diabetic, you just have to show good control of your blood sugar for about six months prior and maintain that. So you can pass the class to physical. And you can also get I believe in experimental pilot's license, but you can't make money from flying as a diabetic, at least that I know of as a type one, because they're concerned with the liability of. And I believe the terms were subtle incapacitation, and sudden incapacitation. And if you have cargo or humans, you know that you're responsible for the really big risk. And so that's my understanding of why you can't do that. And same reason for the military, because then you'd be putting other folks at risk if you know if something happens to you.

 

Stacey Simms  24:32

And in what context, though, and I apologize because I wrote down, F18 that I don't remember we were talking about trying to get more good people with diabetes to be able to fly more.

 

Ernie Prado  24:44

Oh, so definitely F18 is just one of the planes that I really love the beautiful they're so over powerful and they're just, they're sleek, and they're so cool until the Navy flies over them on carriers, you know, and actually have a buddy or two that flying is just kind of jealous. But no. So as far as I know, you probably would not have a type one diabetic find those, especially, you know, they're just not available in the civilian world. And since we can't join the military at the moment, and probably for the foreseeable future, there's, you can probably fly backseat, you know, as a passenger, but not as the pilot. But you know, I do, there's apparently a stunt pilot that does fly, you know, his personal aircraft at AIR shows. And he performs some really amazing stunts. So we can fly is just, it's a limited set of aircraft.

 

Stacey Simms  25:36

And you want to be a flight controller, you said, what is what is that job is that one of the guys that sits where we see the movies, you know, see the Apollo movies, they're sitting in the, in the back home on the front of the computer? What is that?

 

Ernie Prado  25:49

Yeah, so that's kind of the image that's conjured up when flight controller is talking to. So we have, so shuttle, and ISS and Apollo and Mercury and Gemini, they've all had flight controllers. And basically, if I controller that helps monitor the systems onboard spacecraft, make sure that everything is going fine for the crew members try to keep them safe, address real time problem. So it's a whole host of responsibilities. And so there's an entire team that does this, and it's going 24 seven, so there's always somebody monitoring the spacecraft, and it's fine. And there's Capcom, which talks to the crew, there's a flight director who's responsible for the mission. One of the disciplines that I can talk about is also which is operations support officer. And that's the group that I was in. They are responsible for mechanisms, maintenance, and things of that nature. There's then there's other groups such as Prop, which is propulsion. And so they all have different responsibilities. And but yeah, so those folks have, you know, responsibility over the crew safety, and, you know, to help them perform science, when they're in space, and just help maintain that aircraft or spacecraft.

And one of the terms that they use to describe a flight controller is a steely eyed missile man. And it's a throwback back to the early days of flight when we actually put astronauts on modified ICBMs and shove them up into space. So, yeah, I was trying to do that. I was working halftime in that group and halftime at the space vehicle mock up facility, which is where I still work now. That's where we train astronauts for the inside of the space station, and I had a big project coming up. And at the same time, I was trying to see if I could become flight controller. And I encountered some resistance from the medical side, because they were concerned about, you know, my ability to handle the stresses. And so I did have support from upper management saying that if I had the technical knowledge and know how and competent that they would support me in trying to still become flight controller. But Tom had this really cool project to create the note three mock up, that was, you know, had a large budget, and it was high visibility and a long term schedule. So I kind of gravitated towards that. And it was really cool, because it culminated in me getting to brief the ISS program manager on this mock up, bill for the ability, and I never thought I get the, you know, speak to a person like that. So that was very cool for a person that only been around as a full timer for about two years.

 

Stacey Simms  28:31

Yeah, and that sounds pretty amazing. This is kind of a silly question. But it's in my head after I mentioned the Apollo 13. In the movies, we watch movies like that, can you walk, can you watch movies like that? I can,

 

Ernie Prado  28:42

and I enjoy them. And so actually, this is this one's pretty cool. And we saw the co op, you get to do a lot of neat things, visit the historical sites and talk to historical people are influential people. So we actually watched Apollo 13, in the Mission Control Room where Apollo 13 was controlled. Wow, that was one of the coolest things that I've done. And I took a picture of the console that I was sitting at, and that same wall, a replica of that console was in the movie on the screen. And so I was showing both of them on one picture, and I was going, this is cool. One thing that I tend to do is point out the errors about that, and my friends are like just enjoy the movie. But it's it's kind of fun. And it's a little bit of the you know, the nitpick Enos of actually what's going on and that's wrong, this is wrong. But the the movies are good at inspire folks, and they get them interested in space. And be there just enjoyable, you know, it's what got me interested in it in the first place. And without that, you know, you wouldn't interest other folks. So like, for instance, gravity, that movie was just beautifully done with the cinematography. I mean, it's just incredible. And it sucks you in but there was a few technical details or are lovable and that's not quite right. Right. But overall, they're really I love watching them.

 

Stacey Simms  30:03

That's great. You know, and when we think about the space program, and you've mentioned Gemini and Apollo in the beginning of the space shuttle, and that's when I was a kid, the space shuttle was what was new, and it was so exciting. And it seemed like a few years ago, that Americans might not be that excited about space anymore. You know, the funding was going down, and people weren't talking about it. And then you have things like Scott Kelly's year in space that he just returned from where he was tweeting all these pictures out and getting people interested again, and we have, you know, the the interest in Mars and different projects. Do you feel like it's on an upswing again?

 

Ernie Prado  30:35

Oh, yeah, definitely. And that's such a heartening thing. So I was lucky and got to work a little bit during the time of shuttle that got the Washington Actually, this is a really cool experience that I just remembered right now, because you were talking about how you were around, you know, during the beginning of shuttle in 1981, which is the first launch. And if you haven't heard the video, or seen the music video, actually, countdown by rush, I highly suggest it for anybody. They attended the first launch of the shuttle Columbia, and they put together this just amazing video that kind of makes my hair stand on that when I watch it, because it's just so cool. And it's like, it's just really powerful. And I got to watch the last shuttle launch, not in person to hear Johnson Space Center and Sony Williams, who's an astronaut was right there, kind of next to me and a few other folks. And you know, she was an astronaut that has flown on the shuttle, and it was just kind of really cool to see her emotions for the final flight of the program, when it was closed out. So that was that was a cool experience. And seeing the the, I guess, resurgence or like the increasing enthusiasm about what we're doing is just so cool. And, you know, we can go out and advertise for ourselves, we really just kind of rely on the science that we put out to benefit, you know, every day portions of our lives. And spin off that influence people. So you know, a lot of folks on being NASA influences them, or their lives.

But you know, a lot of the technology that's around it has some that NASA influence. And so you know, movies like The Martian, and the mission that we just did with Scott Kelly are so cool, and so, so essential to keep folks interested in what we're doing. So it really does, it makes you feel proud of the work that you do and makes you want to do it better. Because really everything we do is for the benefit of our country and just afford, you know, knowledge for humanity. And that's, that's our entire mission is to learn about where we are and what's out in the cosmos. And it's really great to see people, you know, start to feel great about that.

 

Stacey Simms  32:49

And when you talk about the things that come from the space program that are relatable, I mean, you know, it's kind of jokey like oh, Tang, but you know, all the things that we use in everyday life didn't the insulin pump wasn't that developed, I thought I read a while ago, that part of it was developed because of NASA.

 

Ernie Prado  33:07

So I'm gonna have to check my history on that, because I'm not exactly sure exactly how we have impacted that. But if you look at some of the broader history, not just insulin pumps, integrated circuits were influenced by, you know, NASA engineers and advancements in technology. And, you know, coding and signals and mechanics and all sorts of things. So in a broad way, I'm sure it was benefited Somehow,

 

Stacey Simms  33:36

I just, we took a tour of the we took a tour a couple years ago of the Kennedy Space Center. And I remember them saying that because we all went What? So I'll look that up. I'll fact check that before we put that Yeah,

 

Ernie Prado  33:48

I'd be very interested in learning more about that. That would be so cool. And I can't believe I haven't looked into it already. If I taught you something, I'd be so excited that you did

 

Stacey Simms  33:59

and say, Oh, you know, talk to a rocket scientist. Didn't know something I knew. But let's get back to diabetes. When if we could. How are you doing now? I mean, you mentioned you struggled when you were in college and as a young adult, are you? Do you feel like you have incorporated more into your everyday life? You do? Okay.

 

Ernie Prado  34:19

Yeah. So I actually, as soon as you asked that, I looked at my pump, and I'm currently at 119. And I've been in my perfect range here for see at least three hours, six hours, 12 hours ago had a little blip above 224 hours, I had a little blip about 250. So I'm doing pretty good. You

 

Stacey Simms  34:36

were nervous. You were nervous about talking to me. Oh,

 

Ernie Prado  34:39

not at all. I do manage it a lot better. My A1C is not perfect. It's not eight right now. My goal is to get it down to those 7.5. But you know, using the CGM and you know, actually, you know, checking my my sugar with pricking my finger, you know, four to five times a day. It does help. Sometimes it can be hard to get the point Five times, or five times to check it in one day, but you know, I try to make it a priority as it should be. And really not try to brush it off at all, you know, I'll be fine, because it really does have a huge impact on my life and so levina looking to do is get back to work and out if you went back out about a year ago, and it kind of delayed me in that process. So I've started to start to do that a little bit more. So that's helping, and, you know, trying to eat better, has also helped. And, you know, I, I don't really drink a lot of alcohol, which, you know, also does help keep the numbers controlled, though I'm doing much better than it was in college. Because there was one point where I didn't check my sugar for four months. And when I think about that, now I'm going What in the world was I thinking?

 

Unknown Speaker  35:51

Yeah, well, you know, I and

 

Stacey Simms  35:53

I asked that question not, and I appreciate you sharing numbers. And I always feel really nosy when that happens, but but it just sounds to me like somehow you've gotten from that college kid who didn't want to check it. All right. And I appreciate you saying that, too. Because that's reality that happens to somebody who's now really accepted this and and doing your best was what you got?

 

Ernie Prado  36:14

Yeah. And, you know, I figured it's not going anywhere. Am I still frustrated about it? And sometimes wonder, you know why this happened, of course. But, you know, I'm trying, you look at the positive aspect of it. And so actually, you know, like Sarah Sanders, and I had, luckily had a chance to meet her. And I read her book and talk to her about it. And her view on it was just so positive. And just, you know, a woman make the best of this, that it had a huge impact on me. And you know, I've been more accepting of it. In the past few years, I remember when I first got my pump I was all excited about us showed everybody. So being in control of it also helped me be a lot more accepting of it. You know, when it was my numbers were out of range. I didn't want to think about it. And I didn't want to talk and advocate and teach people but I was just like, kind of burned out. So it's actually kind of like this cyclical thing where the better control you take of it, the more accepting you are, and the more you want to educate and get, hopefully, influence other people that have to do the same. And I'm not sure exactly how that works. It seems to be a strange tie. But yeah, I just, you know, I probably talked too much about it now. I think, folks, okay, or you get it, but yeah, I think it's great. Yeah,

 

Stacey Simms  37:34

I just jump in and say for now, I should jump in and say Sierra Sandison, if you're not familiar with her is of course, Miss Idaho. She were insulin pump in the Miss America Pageant. I think it was two years ago, starting the show me your pump, social media movement, how did you meet her?

 

Ernie Prado  37:50

So she came down to the ADA convention in Houston. And, you know, I'd heard about her a few years ago, because of why she did wearing the pump on her, on her on her body when she was getting the pageant, and I was just thinking, that is so cool. You know, she's old enough, or, you know, being proud of, of being diabetic. And I guess I hadn't ever thought of it in that perspective. And I was just like, you know, I really kind of admire that that's so cool that she's, and you know, just a response how parents are like, you know, you help my kid feel like that it's okay to be diabetic. And thinking back to the early days, and I had it and where I was told kind of young, just don't talk about it. It was it was really just a nice feeling. That's good to have that kind of inspiration for other folks. And so I said, Well, I will buy your book, read it. I'm a little hyper sided. I want to talk to her just because she seems really cool. And so I talked to her for probably God, who knows half hour at least. And so we ended up being, you know, friends on Twitter, and all that stuff. And so she's been, you know, a really cool person to know. And, you know, just somebody that I kind of look up to just for being such a role model for diabetics, and raising advocacy for it and all that.

 

Stacey Simms  39:09

That's fantastic. I love hearing that. And we talked to Sierra last year on the podcast, and she's just, she's just terrific. And she's also you know, she's this it will see in her words, I think she's like a real math and science geek too. She's really cool that way.

 

Ernie Prado  39:24

Yeah, I think she's actually chosen to pursue engineering, which I was just like, Oh, that's awesome. Yeah. If you ever need any help with with yourself or college, let me know. Because, like, I mean, you know, you got the common thing of diabetes that then you know, whenever I meet an engineer, I'm like, Hey, cool, you know, the pain in college, you've been through it. So I always like to encourage more engineers and get them into the into the STEM fields just you know, cuz we need that talent. And it's really cool to see folks be passionate about the stuff that dorks like, like myself, you know, like math and science, chemistry and all that. So Yo, it's awesome. We need more dorks.

 

Stacey Simms  40:03

All right, so what's next for you? What's next for you at NASA? What are you doing now? Where would you like to be in a few years?

 

Ernie Prado  40:11

So that's always kind of a hard question for me to answer.

 

Stacey Simms  40:15

I feel like it's a job interview. I didn't mean to phrase it like, yeah,

 

Ernie Prado  40:17

oh, no, it's okay. It's the way I think of it. I'm the type of person that kind of sets a goal. I don't know how in the world, I'm going to get there. But somehow I tried to chart my path. And so it seemed to work out in several instances for me, so I keep taking that approach. Currently, I'm a market manager, project manager at the svms. And so I lead technical projects to build mock ups, improve them, upgrade them to approve engineering activities and training activities, I lead with outside companies, other centers, divisions, and directorates. So it's kind of this big catch, catch all integration job. And I get to meet a lot of cool, interesting people and, you know, still get to use my technical background for projects, but also get to learn about the management side of the house. So you know, dealing with budgets, and, you know, managing a project. So that was something I didn't learn in school, and it's a cool skill to learn.

 

And, you know, the first few years, it was a trial by fire because I had no idea what I was doing, I was in the technical background. So currently, I've been involved in an agency project about how to apply models, a systems engineering, to the projects that we're doing. And it's an approach that kind of takes a consolidated view of projects, including cost development, schedule, requirements, activities, you name it, everything goes into one single source of truth. So that that's a neat project. And it will be reported to the agency headquarters here, by the end of the year, I really don't know where I see myself at though, I know, I'd like to continue here. And just keep being involved. And, you know, giving my small contribution to, to what I think is man's greatest mankind's greatest endeavor, you know, it's just an honor to be here and contribute to something. So I think scran and you're working amongst these, you know, so many folks that have a passion for what we do, and just they're so bright and talented. And, you know, I consider myself an average person here at you know, because there's so many bright folks out here. So, like I said, it's a hard question, eventually, if I can try to fly some knowledge base on down, and I will try to do that. I can. That's one of my goals. Right now. I don't know how it's gonna be achieved. But you know, I'm gonna work towards it. Yeah.

 

Stacey Simms  42:37

Let me ask you one more diabetes question. Ah, there are a phrase this, what would you say to somebody, maybe a 15 year old kid, maybe somebody older who's diagnosed with type one and is told, I'm sorry, but the dream you had, is not going to work out? At least not now. You are so positive about things. I'm curious, you know, how do you get past that? And what would you advise somebody else to think about if they're told, I'm sorry, but you just can't,

 

Ernie Prado  43:04

because of diabetes. So I'd say you know, at first, it's a little bit of a blow. Because some, it's something that's out of your control. So one of my friends who's a pilot said, you know, you'd be a shoo in, in the Air Force to be a pilot, because of your technical background, it sucks that you can't do it, because you're diabetic. And I was just like, I remember going. That's depressing. Um, but, you know, there, I think there are realistically some things that we probably can't do. And realistically, there's others that, you know, we're just told we can't, but we absolutely can. And so I would say, you know, fight an uphill battle, don't give up and try every single Avenue available, to try to do what you want to do. Because more than likely, there will be a way that you can find, and without folks, you know, kind of Blazing those trails. It's not going to happen. And, you know, I know, it's not the same thing. But going back to 1980, there were only male astronauts, and they used to tell women, you know, don't bother applying, you're not going to get selected. And now we have a number of female astronauts. And in fact, you have commanders like Eileen Collins, who was an incredible person to have in our astronaut corps, Peggy Whitson and, you know, Sally Ride and just a number of these very influential people that were told, you know, don't apply it. Why even try and you know, they forged the path. And because of them, now, other people are able to do that same thing with African Americans like Guy blueford and make Jameson. You know, they were astronauts, and in the earlier days, you know, they weren't selected. So I think that without butting your head against the current limitations, don't never, you know, what we can do will never be expanded. So fight the good fight. as cliche as that sounds.

 

Stacey Simms  44:57

That's a great answer. I love it. So thank you so much for joining me today. I'd love to check in with you periodically and see how you're doing. And it's just, it's such a cool story, and I really appreciate you spending some time with me.

 

Ernie Prado  45:10

Oh, absolutely. I appreciate you. Thank you for speaking to me. It's kind of cool to talk about some things I've forgotten and every day. Yeah, absolute pleasure. And I appreciate you know, the invitation.

 

Unknown Speaker  45:27

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  45:33

I will link up more information about where he is today. You can always find out more at Diabetes connections.com. I will of course include information about the super Guppy which is the project he is currently working on. He's the project engineer there. I'm trying to remember the last time I saw him you know, it's it's funny these days trying to remember when you saw anybody because of course, all of 2020 we saw nobody but I saw him at a friend's for life conference, I want to say two years ago, and I'm bringing it up because it's a little embarrassing. The last time I saw Ernie, he was chasing me down because I forgot my phone. I left it with him. And my phone also has my wallet in it. I have one of those cases where it's got my license, you know, my credit cards, all that stuff. And I hadn't even noticed it was gone. And then all of a sudden here he is running up.

 

Stacey Simms  46:18

Oh my gosh, so embarrassing. But thank you. He's just a Boy Scout, in addition to being a rocket scientist, and I do appreciate you. He's also been really great to Benny. He met Benny This is a different time. But another friends for life conference. It had to be four years ago helped me out people when it was at the Marriott maybe it was five years ago now. I'd have to look that up. But it was it was the year of the Irish dancers. Oh, my goodness. But anyway, we sat down with Ernie and we were just talking and introducing and Benny absolutely adores him and was eating this enormous dessert. I know Ernie remembers this because his eyes are so wide. It's like you're letting them eat this. But then Benny was going swimming. It was night he was doing this nighttime swim with some friends of his and they're having a really good time. And you know, you kind of need to carp up before you jump in the pool. And I was so excited to show him the next day to show Ernie that he was like 100 all night long after eating this enormous dessert. It's funny after during the show for so long, how I've become friendly with so many of you as you listen and as your guests and man that's so rewarding to me.

All right. Remember, Tuesday is our regular scheduled episode all this year. Tuesday will be the regular interview episodes with all the segments and info that we do. And on Thursdays I will have these classic episodes where we take a look back didn't expect to reminisce there at the end. But you know, as we look back on the last couple of years, that is bound to happen. So let me know what you think. I always like to hear from you. big thank you to John Bukenas from audio editing solutions. My editor who is great about taking on new projects like this, I appreciate you john.

 

Stacey Simms  47:43

Thank you so much for listening. I'm Stacey Simms. Until next time, be kind to yourself.

 

Benny  47:53

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

Feb 2, 2021

When Swiss pump maker Ypsomed launches brings it's business to America, likely in 2022, it'll be with Lilly Diabetes as their partner. The Ypsopump will be the first pump in the US that only takes one brand of insulin. This week, we spoke with Mike Mason, president of Lilly Diabetes about that decision, more about how the actual pump system will work and their timeline.

Stacey also talks about how they were able to use a coupon to keep Benny on humalog - it wasn't as easy as some have said. And she has advice to make it work for you.

Plus, new A1C guidelines for kids with diabetes.

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

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

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Episode Transcription:

Stacey Simms  0:00

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

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, Swiss pump maker Ypsomed is teaming up with Lilly Diabetes to launch an insulin pump. Here in the US, it'll be the first pump that only takes one brand of insulin is Lily about the thinking behind that decision.

 

Mike Mason  0:41

We look at this ad we don't look at it necessarily as limiting options, we look at bringing up a new option to the marketplace that as an integrated solution can provide a new way to be able to control the blood sugar. So that's how we look at it.

 

Stacey Simms  0:57

That's Mike Mason, president of Lilly Diabetes, we talked about what that integrated solution is more about how the actual system will work, and of course more about its unique proprietary nature.

I'll also catch you up on our insulin coupon experience and talk about new A1C guidelines for kids with diabetes.

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 where we aim to educate and inspire about diabetes with an emphasis on people who use insulin. This year, I'm doing a heavy focus on technology. So this episode is a bit of a follow up, or maybe a partner to the one we did in January with Ypsomed. As was announced late 2020 Ypsomed and Lilly diabetes are teaming up to bring the existing YpsoPump which is used in Europe and Canada and some other countries around the world to bring it here to the US hopefully to submit to the FDA later this year, and be in the marketplace in 2022. The Ypsopump, as you heard in that episode already has a lot of features that are very popular. It's a very lightweight pump, it has the hybrid closed loop system, similar to Tandem t slim, similar to what Omni pod is hoping to launch later this year. So there's a demand for this kind of pump. But the question is what's going to happen because of the proprietary nature, as you'll hear in this interview, and as we talked about with Ypsomed, this pump will only take Lilly branded insulin.

So to that end, and did you know that I have a weekly newsletter they do. And this year, I added a poll to it, which is really very popular. I'm so excited to see this. And when we did the episode with Ypsomed,  I asked in the newsletter about your opinion on it, would you use a pump that only took one type of insulin? And I gotta say the results were really interesting and I thought kind of surprising. So 40% of people said yes if it's a great pump that is worth it 48% said maybe I'd have to feel confident about my insurance coverage and 12% said no way I thought the no way would be a bigger number so we'll keep those polls going I have a link always in the show notes about signing up for the newsletter it's very easy to do I don't spam you come on you know it's just me. I do send out a newsletter though with the week's show some thoughts about it that poll and some other information you know, as social media shows us all fewer posts frankly from the pages that we like and the people that we follow. This is a great way to make sure that you do not miss an episode and that you know what's going on with the show at all times.

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

My guest this week is the Senior Vice President of Eli Lilly and company and the president of Lilly diabetes. Mike Mason has been with Lilly since 1989. we last talked to Mike on the show back in 2018. It was our first conversation about the price of insulin. And we of course bring that up here in this interview. But we are mostly focusing on the pump and the partnership with Ypsomed and what it's going to take to bring it to the US although I promise I do talk about pricing and accessibility and everything you want to know. Mike, thanks so much for joining I'm really interested to learn more appreciate you coming on and spending some time with me.

 

Mike Mason  5:04

Happy to do it, Stacy, appreciate what you do for people living with diabetes.

 

Stacey Simms  5:08

Let's just start by talking about the partnership here with Ypsomed. How did this come about? Tell me about that, you know, the basics. And I guess we could start with really just, you know, why are you at really excited about this?

 

Mike Mason  5:21

Now we're excited about it. I mean, what we do is we step back, and we take a look at where the unmet needs are in the marketplace, today, and then how science and technology is developing. And what we saw was that, unfortunately, a good percentage of people who who live with type one and type two diabetes for own insulin are not in good control. And so we saw an unmet need there. And we saw enough advancements in cgms, as well as technology that we felt that putting insulin together with a CGM, and in good software and analytics, that we hope can provide better outcomes with really less burdensome for someone who lives with type one or type two diabetes. So that's why we were interested in getting into this space. And as we were looking at options, we thought it was best for us to pursue a partner that had a good pump that was on the market today, who was an excellent developer and manufacturer of pumps. And we found the perfect partner in Ypsomed. So we we really liked their pump. They're an excellent Swiss bass manufacturer, and we think it's a good cultural fit for us, we think we really will work quite well together. And we're both very customer focused and want to make sure that ultimately, what's most important is helping people who live with diabetes achieved the control,

 

Stacey Simms  6:49

before I asked you about the functionality of the pump. And before I asked you about the features of the pump, and more about the partnership, I'm just curious if we could go back, I was at the blogger event that Lily had in Cambridge, in 2018, where you showed us kind of the prototype of a pump that you were working on with a different company, can I ask, What happened to that is that not going forward in any way, shape, or form now,

 

Mike Mason  7:13

oh, we very much hope that that product goes to the marketplace, the rights to the DEKA pump has gone back to DEKA, we really value our partnership with them. We think it's a very advanced pump. And we think it could really help people living with diabetes. And we know the DEKA is advancing, planning on, you know, advancing that pump to the marketplace. For us, we reflected back on how we can, you know, best use our capabilities to help people with diabetes and other therapeutic areas. And as we were facing COVID, we reflected on our ability to develop a new antibody in nine months and get that to the marketplace and manufacture that and we felt that as a company, our development, and manufacturing focus should really be on developing new medications versus new new pumps and new devices like that. So we decided our deck arrangement, we were responsible for the manufacturing and a good part of the development. And we felt it was better for us to find a partner who already had a pump, who is a manufacturer and developer, and for us to say primarily focus on building the integrated system and really having that experience with the people living with Type One Diabetes and type two diabetes.

 

Stacey Simms  8:34

So any DEKA pump that goes forward, will that still be used with the proprietary cartridges that we're going to talk about down the road? I mean, it's slowly still involved with the DEKA pump whatever comes to market, or is it basically all in their hands now,

 

Mike Mason  8:47

it's in their hands at this point.

 

Stacey Simms  8:49

Let's talk a little bit more about that. Ypsomed partnership. As you listen, we did an episode with them. They went through a lot of the factors and different functionality of the pump. So I'm not going to go through that all again here. But I am curious, Mike, if you could talk a little bit about the algorithms in the pump. In other words, how might it be different from the other pumps that are coming to market tandems control? IQ software is one the Omni pod horizon, that sort of thing.

 

Mike Mason  9:14

Yeah, I mean, I think algorithm will be critically important at the end of day what's what's most important is that you you build an integrated system and cannot help someone achieve better control. And what we think is we can use our 97 years of experience with insulin to build algorithms that that do a very good job of controlling insulin and blood blood sugar. And so that's our plans if we as we develop new products like Lyumjev our new ultra rapid insulin. This provides us to potentially provide unique algorithms that can really maximize the potential of a product like longevity.

 

Stacey Simms  9:52

So let me ask you the the biggest question for my listeners is all about the proprietary nature of the pump. And before we get into that, let me just ask you a few details about it. But only use humalog or will it use other insulins you mentioned, Lyumjev things like that.

 

Mike Mason  10:06

Yeah, let me tell you a little bit about the pump and why we were excited about the pump, we think it's a very good form factor. It's a small pump, it has a kind of icon based screen that makes it very easy to use for people who were. But one of the most interesting parts of the pump for us was the fact that they  that uses a 1.6 millimeter cartridge. So it's a prefilled cartridge, that then gets plugged into the pump. And what that allows is allows someone to change if their reservoir goes down. So if the cartridge runs out, they can add new insulin independent of their infusion shed change. So if you think about the future of infusion sets, we think that will grow from three days to longer than three days, just like we saw the wear of cgms increase. Well, that doesn't help if your reservoir if you have to change your infusion set every time you use your your reservoir up. And so we believe that the 1.6 ml cart and the fact that they can, you could do kind of a hot change and change that independently. infusion pump should be a really nice feature for someone living with Type One Diabetes, or even in particular type two diabetes who uses larger amounts of insulin on a daily basis, be able to get the full life on an infusion set and be able to add insulin very easily into the pump. So that was one of the primary features that we liked. And so right now that 1.6 ml cartridge isn't on the market. And so in our press release, we communicated that we needed to make sure that we did launch that 1.6 ml cartridge in our insulins, both humalog and loon jet to make sure that that people could use our products in that pump.

 

Stacey Simms  11:51

When it comes to market. It will only let me ask it this way. Right now in Europe and in Canada, though it takes the prefilled cartridge the same pump of novo, right I mean, these 1.6 milliliter cartridges exists elsewhere. This is a US only type of modification. Is it a different kind of pump that's manufactured in the US? How does that happen?

 

Right back to Mike answering that question. But first Diabetes Connections is brought to you by Daario health. The bottom line you know you need a plan of action with diabetes. We've been really lucky that Benny's endocrinologist has helped us with that and that he understands the plan has to change has been he gets older you want that kind of support so take your diabetes management to the next level with Daario health they're published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one see within three months at a 58% decrease in occurrences of severe hypoglycemic events, try Darias diabetes success plan and make a difference in your diabetes management go to my dario.com forward slash Diabetes Connections for more proven results and for information about the plan now back to Mike about how the mechanics of the proprietary nature of the pump will work

 

Mike Mason  13:17

well in the us right now there's that 1.6 ml cartridge isn't on the market place so we'll have to see you know is that advances is still kind of early on in development so we don't really know what instance will be available in the US for this you know in this cartridge size. But what do you think is important is first of all, I don't think anyone should be worried if they're on novels insulin or any other instance there's going to be plenty of pumps really good quality pumps for them to use so I wouldn't have you know anyone be concerned about their ability to have a high quality pump to use with their insulin what what we see is we we see an opportunity to provide a you know, an integrated, very simple to use pop another option for people living with type one and type two diabetes to have a an integrated, simple experience to improve their their blood control.

 

Stacey Simms  14:08

Yeah, no, I think it's it looks like a fantastic pump. It's tiny, it's light. I know people in Europe who used to love it. I love the idea of having more pumps in the United States. But just to be clear, so I guess the the question about the proprietary nature that we keep referring to is it just because there's no prefilled cartridges of other insulins available in the United States? I mean you probably cannot answer this so I'm gonna say this out loud and you can say no comment or nothing but if I have a yep so mid pump that is approved in here and let's say 2022 and I bring in novo rapid or you know Novo Nordisk branded insulin from Canada in the same kind of glass insulin cartridge and I stick it in the pump I've made my IP so med Lily pump now compatible with other insulins.

 

Unknown Speaker  14:56

Okay, didn't you comment on that

 

Mike Mason  15:00

Wow, yeah, you're expecting a lot of people moving bringing product over from from Canada, I, you know, it's still we're still very early on in our apps is at this point, things are gonna have to develop and we'll get a better answer that question down the road.

 

Stacey Simms  15:14

Got it? Okay, I know, I know, you cannot speculate you have to be so careful on what you say. And I appreciate you coming on and answering these questions. But I mean, I'm sure you can understand in a market that has three available insulin pumps in the United States that when one comes in, people have questions about why should I switch to him? And the biggest question that I have seen is, well, pumps usually have a four year warranty. And my insurance changes every year, whether I have with the same insurance or not, the terms often change, including what insulin they want me to use, we just went through this with my son this year, we had been using one type of insulin for a long time, and they switched us to another brand. And, you know, it's disconcerting, and it's a little, you know, it's, it would make I'll be honest with you, Mike, it would make me hesitant with the United States healthcare situation being what it is right now, to go to a pump, that would lock me into one kind of insulin, you guys have got to be thinking about that. What are the discussions? Like? Can you share anything about that?

 

Mike Mason  16:12

Well, let me tell you kind of how we think about I mean, we, our goal is develop an integrated solution, I kind of look at it a little bit like the computer market, where, you know, early on, you know, you were able to and you still can today is build a an integrated system, you know, you can pick the monitor, you want the processor you want. And my brother continues to do that. And he has a great computer that works really well for him. And for myself, that's not what I'm looking for a computer, I've got four kids and a lot to do. And I want something that's just gonna work, I don't necessarily care what the processor is, or what the monitor is. And so that, you know, I kind of went to a Mac 1520 years ago, because it was simple solution. So it was another option out there, I think, you know, Apple provided a another option to people who needed to get work done and wanted to use a computer, we kind of look at that the same way. On the pump side, I think you're gonna have people who are want to have each component and be able to build that. But if we look at some segment of the market, and in particular those people with with type two diabetes, we believe a simple solution can provide, you know, a real good answer for those individuals. So what we look at this ad, we don't look at it necessarily as limiting options, we look at bringing a new option to the marketplace that as an integrated solution can provide a new way to be able to control their blood sugar. So that's how we look at it.

 

Stacey Simms  17:40

So let's talk a little bit more about that integrated system. When I spoke to Ypsomed, they talked about it using a Dexcom having a very robust app, it looked like you were able to bolus by phone or you would be by the time it comes to the United States. Is the partnership with Dexcom exclusive or do you think you might work with other companies like Abbott, you know, on their libri and different cgms that could be integrated into the system?

 

Mike Mason  18:04

Yeah, right now it's a three way partnership between us and and you have submit and then with your leveraging Dexcom CGM. At this point, we'll have to see how things progress and whether or not we bring Abbott or other CGM into the system.

 

Stacey Simms  18:22

Ypsomed is also very much a pen company. And when I remember in that 2018 event that I've talked about before, Lily was also talking about integrative pens and things like that. Is that part of this deal here too? Or is it just a pump?

 

Mike Mason  18:36

Now, this was just an exclusive partnership.

 

Stacey Simms  18:38

So when when you were looking at it, so med pump, as we mentioned, it's very light, it's very intuitive. Have you tested it? Or have they tested it in the US market yet? Is that something that you'll be doing in terms of, you know, human factors and how people respond to it? And that sort of thing?

 

Mike Mason  18:53

Yes, we have to, you know, it'll be submitted to the regulatory agencies in order to gain approval in the US market. And as part of that, it will be tested in the US through human factors. And we think it will, will do quite well. We've done a lot of market research and interviewed people who use pumps are who are interested in using pumps. And we think that the attributes of the product are going to be well received in the US market. You know,

 

Stacey Simms  19:19

again, I don't know how much you can answer on this question. But when you bring a pump like this that's been used in many other countries for several years, is the testing different than say, you know, what you were what you were originally planning from Cambridge with the DEKA pump, a brand new pump, something that hadn't been on the market yet. I would imagine that it's a I don't want to say a little smoother, but it's got to be different. When it's already been out there and used in 1000s of people.

 

Mike Mason  19:42

The information is helpful, but the application is similar for every pump, no matter where it's approved, or whether it hasn't been approved before. So you know, the FDA requirements are the same no matter what

 

Stacey Simms  19:52

got it. I'm curious to know the cartridge that we've been talking about that isn't available in the United States yet. Are there other applications For Lilly for that, I mean, that 1.6 unit cartridge? Is that something that could then be used in pens? Are there other uses for it? Or will you be making it just for this pump?

 

Mike Mason  20:09

I mean, initially it will be used for this pump or any other device that uses 1.6 volt cartridge, you will evaluate every time you put a new form factor of insulin out there, we'll look and see if there's other opportunities that better meets the needs of people living with type one and type two diabetes. So we'll see no immediate plans at this time.

 

Stacey Simms  20:28

Okay, are there other devices that use it currently, I'm not familiar, not currently.

 

Mike Mason  20:32

But it's no reason why someone couldn't produce a third party, you know, we usable 1.7 card. That is

 

Stacey Simms  20:42

it's interesting. You mentioned people with type two quite a bit in this conversation. And I know in my conversations with manufacturers with tech companies, more and more people with type two are using insulin pumps and are using devices like Dexcom. And you In fact, I'm really trying to talk about more people who use insulin rather than the specific types. We talk about devices like this, which honestly, it's kind of hard for me after all these years. Can you talk a little bit about the appeal to that market? How do they use this kind of pump? In other words, most people I know with type two who need insulin, don't bolus for every meal, they don't necessarily use the same amount of insulin as type with people with type one. I'm curious if there's any information you could share on that market?

 

Mike Mason  21:21

Yeah, I think what we see is, first of all the needs while the disease is different, the needs of someone to control their blood sugar, both for postprandial as well as for basil is still there, especially for those who are later stages other type two diabetes. And so we feel that no matter who someone is, if they're on insulin, the big thing they want is to kind of stop thinking as much about taking insulin three or four times a day, you know, that's something that weighs on a lot of people mind. And we think it's important to be able to reduce that burden, but also improve care. And that's what we think, integrated insulin management system can do that's wrapped around a pump, whether that's for type one, or type two. Now, your question around, you know, what's different about type two diabetes, the big difference is the amount of insulin that they take on a daily basis. And because of that, I think the reservoir size and the ability to change that independent of the infusion set is an important feature of this pop and one that we think both type one and type two, but in particular type two beddings can really,

 

Stacey Simms  22:33

you know, it's interesting, when I spoke to the folks at Tandem recently, they brought up their control IQ software for people with type two, and how it's really helped. Because most of the time, it's just that people with type two aren't bolusing for their meals, or for correction dosing. And so being able to have that automatically has really helped. It's something that I mean, just conversationally, it was something that I really hadn't thought of, with an automated system like that. It's interesting. Yeah, it's

 

Mike Mason  22:56

interesting, when we speak a lot with people using insulin, the needs on a daily basis aren't that different, and the thought process and how they manage that, you know, isn't that different, but you're right, you know, and unfortunately, taking insulin is very complex, and it changes on a daily basis, as you know, well, and that's what we hope, we hope we can alleviate some of that burden that people have of controlling their blood sugar and their and their diabetes. In the

 

Stacey Simms  23:24

United States. You know, anytime a new product comes to market, in addition to submitting to the FDA, you have got to work with the insurers to get these things covered. And I'm curious if your conversations about getting the med pump insured, also factor around making sure that anyone who ensures it can make sure going back to what we asked about at the beginning. We'll also cover Lilly insulin as a some kind of package. When I spoke to the CEO of episode med, he had kind of implied and this was speculative, and he admitted that, but he was kind of hoping I guess is the way to say it, that it would be more affordable in the United States because it could be packaged up with healthcare insurers. Any thoughts on that?

 

Mike Mason  24:05

Yeah, I mean, I mean, first of all, we'll make sure that there's obviously insulin supply for for the pump. And so we'll make sure that that comes hand in hand so that someone doesn't have a pump that they can't use their insulin on. So what will definitely solve that problem, as we go to the marketplace, I think, you know, we haven't had any specific discussions with payers on this particular product just yet. But what we've had, generally, in this area is you know, payers are frustrated with their ability to help their members get good control on insulin. And they believe that that better control on insulin can lead to better overall healthcare cost. If you look at the total cost of the therapeutic and devices as well as all the cost of office visits and the very costly, you know, company Patients have diabetes. And so they're excited to not only provide better care of the hope of better care, but also the hope of reduced total medical costs.

 

Stacey Simms  25:10

As we start to wrap up here, just a couple more questions. I got notification, we saw some ads on social media about this is separate from the pump about renewing any coupons for the new year. Can you speak to that a little bit? While I've got you here, you know, for 2021, the lily coupons that are out there? How do people do that?

 

Mike Mason  25:29

Yeah, all they need to do is call our Lilly diabetes Solution Center. If anyone has trouble paid for a Lilly insulin, you can call up early diabetes solutions center. It's staffed with people who are healthcare professionals who will understand the needs and be able to get your solution on the phone or to email that to you with without any paperwork to fill out or anything like that. And so if they do need if one of the things they need is that to get an updated coupon, they can just literally call them and we also are putting more and more options on the website. And we can get you more information on that. Stacey.

 

Stacey Simms  26:06

Yeah, that'd be great. If you could send me the links. And I'll I don't know, Mike, if you know, but I wound up using that coupon in the fall. Oh, yeah, as I said, My insurer switched us we switched in September to a new insurer. And they wanted us to switch to Nova log, which we hadn't used in many years. And I'll be honest, is a little bit of an experiment, I decided to try it. For whatever reason, it wasn't that easy. It took me a couple of weeks that I needed. prior authorization my pharmacist helped out it was we went back and forth quite a bit. But we did get it done. And I'm back to paying about $35 a month for Benny's insulin for my son's insulin, which was great. But it kind of brought me back to the conversation I had on a conference call with Andy Viacari  Last March, I want to say when you know, COVID had first hit and we were all really concerned about and unfortunately, it would bore out with employment in the economy. And the question I asked him at the time was just why not do away with all of these coupons. And because it really while it was difficult, I was able to use it would not have been able to get the Lilly insulin without it with my new insurance. So it did work. But I asked him at the time, I'll ask you now, why not just lower the price across the board to $35? And make it easy for everybody?

 

Mike Mason  27:19

Yeah, I mean, for us, it's a complex healthcare system out there. And we lower lowest price which we have was Insulin lispro that's one of the options that we've had, we dropped our list price by 50%. And, you know, we think that the sweetest solutions that we have, you know, with lowering our list price with listen into the lice pro as well as all the options that we have that are very targeted at the gaps in a system, which is the uninsured people, high deductible plans. And Part D, that we can create the best possible out of pocket experience, no one should have to pay more than $35 for literally insulin 43% of people who usually insulin doesn't pay anything for based on the health insurance. So, you know, we've looked at the problem. And we believe that this is the best solution we have out there.

 

Stacey Simms  28:07

I mean, I hear you, I get it, it's very complicated. You're not operating in a vacuum. But you've said several times that you want to help people get better control, the insurers want to get people in better control. One of the reasons people aren't in great control is because it's really expensive, even though, you know, if you have insurance, you're paying for it, you're paying for the high deductibles. I don't need to tell you we've had these conversations many times before. But I got to believe that this is not a sustainable system. And you know, I don't really have a question there for you, Mike. But I really hope that next year, we're not having the same conversation. And I know you don't want to have it either. So you know, I'm not not because you don't want to answer the questions, but because I I imagine that you know, that even if the price was lowered to $35, that Lilly would be fine. In business.

 

Mike Mason  28:51

I mean, first of all, if anyone has any concerns with, you know, 40 million insulin, call our Lilly diabetes solutions center, you know, with the most recent Part D demo project that the CMS introduced in January this year, no one whether you're in Part D, or commercial or uninsured and have to pay more than $35 for the insulin. You're right. I don't think the healthcare system right now is sustainable, whether it be for diabetes or other chronic diseases, we shouldn't put the medications that are designed to improve quality of life and to reduce overall total healthcare costs. We shouldn't have those at a high price that people can afford. And so I hear you know, that we are advocating strongly and working with our other healthcare system partners, whether that be you know, pbms and insurance companies as well as employers and the government on this topic, and it is a very important topic. And I hope, you know, as the Biden administration comes in, that we can have very good conversations and make progress.

 

Stacey Simms  30:00

Mike, thank you so much for spending so much time with me. I know I kept you over a few minutes and I appreciate you you're hanging on and answering those questions. Thanks for being here.

 

Mike Mason  30:07

Thanks, Stacey appreciate it. appreciate everything you do for people living with diabetes.

 

Unknown Speaker  30:16

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  30:21

More information about Lily and Ypsomed their partnership at Diabetes connections.com. The episode homepage, of course, has a transcript and more information, lots of links. But this is a story that we will of course, be watching over the next two years until this pump comes to market who knows what it will really come to market as things change along the way. But I'm fascinated by the proprietary nature as you can tell, because I'll tell you our Insulin story and in just a couple of minutes, you know, if you're using one type, your insurance company can switch you to a different type, it can be very difficult.

So we'll see another point I just wanted to mention, I didn't bring this up during the interview. But when Mike talked about the uniqueness of being able to change the cartridge, independent of the inset, there is something unique there about the YpsoPump, and I'll talk about that in a second. But it's not exactly as he explained it, you can do that with any tube pump with the Medtronic that are out there right now with the Tandem t slim any tube pump the way we have done it and we have always done it since using atomists. Gosh, almost 14 years ago. Now, when the cartridge runs out of insulin, we change the cartridge. When the inset hits three days, we change the inset and we don't do them together. Not everybody does it that way. Many, many people change them together, they have worked out exactly how much insulin they need, or they just feel more comfortable doing it together. Whatever is your pleasure. But the thing about the episode med pump that is different. My understanding is that when you do that you do not waste the insulin that is in the pump tubing, there is a different way there is something about it. That means you do don't have to push through and prime all of that insulin because I know what the Tandem you do waste insulin because of all the priming. So I just wanted to kind of clear that up and address that. As you listen. I know many of you were thinking that's not unique, but that's what he's talking about.

I have also reached out to DEKA, that is the company that was originally partnering with Lilly, we mentioned that the interview to have a new pump and pen system in the US is very different looking pump, it was cylindrical that was I don't know if that's the right way to say it like a disk, it looked almost like a tiny tin, you know when that's coming to mind is like a tobacco chew tin. Or maybe maybe mints is a better way to put it like almost smaller than your palm, but small, thin and circular. And that was the pump that they were working on really interesting. So I've reached out to DEKA to see if they're going to continue that work. And DEKA, just as an aside is the company from Dean Kaman D. k. Dean came in. He is the person who invented the insulin pump years and years ago, very first one and he's invented a bunch of things, including the Segway. So I'll link up stuff about him to very interesting, I'd love to have him on the show. But that's neither here nor there about Lilly.

I do know that many of you get frustrated when we talk to them, because you want me to just talk about insulin pricing. As you can tell, you know, Mike says what he's going to say. And I will continue to ask about it. We'll continue to talk about it and send me your questions. I'll see whatever I can do our insulin story coming up in just a moment. But first Diabetes Connections is brought to you by Dexcom. And it really is hard to think of something that changed our diabetes management as much as Dexcom share and follow. It is amazing to me that it helps us talk less about diabetes. And that is really one of the wonderful things about share and follow as a caregiver, parent, spouse, you know, whatever, you can help the person with diabetes manage in the way that works for your individual situation. It's about communication, and finding out how they want to share the information. Even your kids this is a decision that you can make together and talking it out really, really helps internet connectivity is required to access Dexcom follow separate follow app required. Learn more at Diabetes connections.com and click on the Dexcom logo.

 

In our innovation segment this week, I'm going to get to our Insulin story. But I also want to mention that there's new guidelines for the A1C when it comes to kids. This was kind of quiet. I was surprised it didn't get a lot of attention. I posted it on social and it was kind of met with a big shrug. The American Diabetes Association has lowered the target A1C guidelines for children with Type One Diabetes. I will read from the summary here. The goal in recommending stricter glucose control was to ensure children with type one have better immediate and long term health outcomes with fewer health complications and reduced mortality rate. The number has gone from 7.5% for children to less than 7%. And I think as you listen you know, the podcast audience, frankly is extremely well educated you guys are up so much stuff. And many of you are already striving for less than seven, you're striving for less than six. We are not striving for less than six. But I think that this is something that many of you are saying, Well, of course, but I gotta tell you, I'm a little disappointed in the way they released this.

They talk about why they say things like these stringent measures are not always practiced by caregivers of 20 patients or diabetes providers due to concerns and fear, it may cause sudden or dramatic drops in sugar levels. And promise, I'm not gonna read the whole report, but they don't talk about better education. They don't talk about access to CGM, to insulin pumps to integrated systems. There's no wording here in the reports about cost, or making sure you have an a pediatric endo, who will give you these things and educate you. I got really annoyed, frankly, reading this, and we'll revisit this, I'll probably reach out to some of the endos who worked on it, I hope to and talk about Yeah, guidelines are great goals are great. But how are you really going to get us there? Because we all know that the A1C needs to be lower right? I am hoping that some of you who have kids with an eight or higher A1C are nodding and going, Yeah, well, what about help for me? How are we supposed to do this alone? I just don't think it's enough to say here's the number. I think they need to give much more help and support. Maybe that's a pipe dream. I know, most pediatric endocrinologists are great people who really want to help. And you know, they see us for this teeny tiny amount of time. But let's follow this one along because it's just it's, it's just so frustrating to know that we have a place we want to be, but how do we get there?

And you know, one of the reasons we get there, and Mike said this in our interview is, you know, we need to make sure people have better access to insulin, so they can live better with diabetes. Well, sure. We went through this recently in my family and I will not go through this beat by beat I did like 10 or 15 minutes on this as a Facebook Live and told the story about a when we were switched, our insurance company switched us from humalog to Novalog, I told the whole story very lengthy double not do that here. I'll tell it in a shorter way. If you want to see the whole story, I'll link it up. But I realized I never told the rest of the story here on the actual podcast.

So here we go. In the fall, in early September of 2020, we had a change in our insurance, a change of employment meant we were now buying our own insurance. And we actually had a great experience. We did this several years ago and had a disastrous experience. It was so expensive, and nothing was covered. I was really excited that this time around, we found something great. We used an insurance broker. And I would highly recommend that maybe we'll do a show on that I'm making all sorts of notes on future shows. But somebody helped us he didn't know a lot about diabetes, but he knew what we needed. So that was great. And my husband lives with type two as well, as you likely know. But this new insurance company did not have human blog as the one they wanted us to get. It was no vlog. And I posted the pricing on social media. It was like, you know, $35 a month for Nova log, and 13 $100 a month for human log. So it was quote covered, but you know, at a different rate. And we were going to go ahead and do that Benny had used Nova log for I want to say the first seven years of his diagnosis, and then our insurance switched us. But he's been doing really well. Everything's chugging along, and I thought, Gosh, I really don't want to switch him.

And I was kind of at sixes and sevens not really knowing what to do. And I was talking to my parents about this. And my dad said, I heard on your podcast that if you have commercial insurance, you can get any insulin with a manufacturer's coupon for $35 a month. And I thought Dad, you're the best. Thank you for listening to my podcast. And of course you are correct. And then that week, I spoke with beyond type one about their new website, get insulin.org. So I went on, get insulin.org and filled in all the information and a coupon popped up from Lilly. I printed it out and it said go right to the pharmacy and get your insulin. And I know how these things work. So I didn't go to the pharmacy, I called the pharmacy and said Is this legit, and they went, you know, tickety tickety tick and the computer. Sorry, Stacey, this isn't going to work for you. And I know the pharmacist there very well. We've been so fortunate. I've known him for all of Benny's diagnosis. I want to say all 14 years, it's been the same guy. So we really went back and forth and tried to figure out what was going on. It was a quirk in the way our insurance wanted to build it.

So I called Lily. They said no, it should be fine. Here's the codes to give the pharmacist everything should be fine. They called the pharmacist he said No, those codes are not going to work. And they didn't what he told me to do. And this is what worked. Our endocrinologist had to call it a brand new prescription. We were going off the old one that we'd been using, you know for the whole year many years. So he had to call it a new prescription. He had to call in a prior authorization. And then after that when they reran the coupon, it worked just fine. Everybody's different. The pharmacist and the folks that Lily told me that every insurance, every state, sometimes the pharmacies run these different ways. So if you run into a brick wall, definitely keep pushing. And I'm telling you as a listener of this podcast, if you do run into a brick wall Lily and their coupon, email me Stacey at Diabetes connections.com. Let's make sure you're talking to the right people, because it took me a while to find the people that really dig down and do this at Lilly. That's their job. And how ridiculous is this that this is somebody's job to figure out How to get around all these coupons and use them in the ways that they're meant to be used, rather than just dropping the list price. I mean, it makes me crazy to talk about, I'm already going too long. Bottom line is we got the coupon to work.

And then it worked a second time. I called my pharmacist the other day, because it was time to renew and I said, Hey, you know, I've heard that you have to renew in the new year, is it going to work? And he said, it's going through just fine. And then he laughed. He's like, let's run it without the coupon. I said, Why? Why? He was just curious. He's like, yep, it's still, you know, 13 $100 a month without the coupon. I said, Well, don't put it in without the coupon. Don't even bother. So that's the story. It leads me back to what happened if I was using the app, so pump with Benny. And then in September, my new insurance company said, No, you have to use no dialogue. And I didn't know, I didn't have a podcast. I didn't know I could do all that. I didn't know I could get the coupon or what if the coupon goes away, there's no guarantee it's going to be there. And then I'm stuck with a pump that I can't use the insulin that my insurance company makes me use. So obviously, we don't know. That's a lot of speculation. But those are the concerns I have. Have you used one of these coupons? How about the nofo coupon what's working for you guys? I'll start a thread in the Facebook group. But you can always you know, ping me and let me know what's up with you. Or if you need help that way. It's just ridiculous. Maybe next week, instead of innovations. I'll bring back Tell me something good. We need the good news stories, too.

 

As I mentioned last week, we are about to start classic episodes. The first one will be this Thursday. And that is an episode I taped almost five years ago with Ernie Prado. He is a rocket scientist for real at NASA. Great guy. It was so much fun to talk to him. He has a terrific story. What I love about his story is it's not the perfect diabetic. He really struggled. And he talks about why and how he kind of got out of that. I think it's one that as a parent of a child with type one. I love those kinds of stories because I don't expect perfection in my kid. And I really like to hear about other people who all due respect, Ernie, who really messed it up and are okay, are doing fine now. So that's on Thursday.

You don't have to listen to it on Thursday. Obviously, whenever you have time, we're going to be putting out a lot more episodes. So when you have time, listen to podcasts. We'll be here for you. thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. Until next time, be kind to yourself.

 

Benny  42:22

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

Jan 26, 2021

What is it like to actually give someone emergency Glucagon? What happens next? This week, Stacey talks to Bonnie O'Neil whose son was diagnosed with T1D at age 5 and is now 24. They had a scary situation while on vacation and out of the country. Everything worked out; Bonnie shares what she learned and what she wants other families to know.

Bonnie is the author of a brand new book: Chronic Hope (learn more here). She has a unique family history of diabetes, losing a brother before she was even born and has a older sister who is still thriving today.

In Tell Me Something Good this week, a big honor for one of our favorite frequent guests and fun news if your child plays Minecraft.

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

 

EPISODE TEXT HERE...

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Episode Transcription 

Stacey Simms  0:00

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

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms

 

Stacey Simms  0:27

this week, what is it like, what really happens, when you need to use that emergency glucagon, I talked to a mom who found out while on vacation out of the country,

 

Bonnie O'Neil  0:37

I was just all I could do to stop my hands from shaking and mix that glucagon and get it in him. So point number one was when you go on vacation, make sure that glucagon doesn't stay in your hotel, keep it on your person you just never know.

 

Stacey Simms  0:52

Bonnie O'Neil's son was diagnosed at age five and is now 24. She has advice about using and carrying glucagon. She also has a unique story. She'll talk about growing up in the shadow of a family tragedy with diabetes, and how she and her sister have overcome that

in tell me something good this week, a big honor for one of my favorite frequent guests. And does your child play Minecraft? Stay tuned.

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 where we aim to educate and inspire about diabetes with a focus on people who use insulin. My son was diagnosed with Type 1 14 years ago, my husband lives with type two diabetes. I do not have diabetes myself, I have a background in broadcasting. And that's how you get the podcast.

longtime listeners will know that this show is not really about our experience my family's experience of diabetes week in and week out. I don't share a ton of personal information about Benny, but we do talk about our experiences. And I bring that up because I did a show recently with him to mark 14 years, which was a pretty big milestone. And we've done a couple of shows together over the years. I always say Benny is a big goofball. But you know, he's got good things to say I like to talk to him. I'm very proud of him, even though I give him a hard time. And I got a really nice review that I wanted to share. I don't ask for reviews very often. Maybe I should if you'd like to leave a review, you can send one to me at the email address at Stacey at Diabetes connections.com. You can leave them on whatever podcast app you're listening to. You can drop them in the Facebook group.

But this one really was nice. And so I wanted to share it and say thank you to Ruth Ann, who posted it following that 14 year episode where I talked to Benny and she says “I listened to it yesterday and came away feeling understood. I've had type one for almost 45 years diagnosed at age 12. Then he was honest in the way teenagers can be when they don't feel pressured to spin things to make other people happy. I found him incredibly inspiring.”

She goes on to write “To me The message was you can be upbeat about life. But don't succumb to pressure to sugarcoat the hard realities of managing type one. I think being real is the healthiest approach to coping with a challenging chronic illness. Please tell him thank you from a grandma in Utah, Ruth.”

And I will say thank you to you. That meant the world to me. I agree. I think it's so important to be honest to write that line of diabetes can't stop you from doing the things you want to do. But it will stop you and slow you down sometimes right not to sugarcoat things too much. I really appreciate you taking the time to write that down and share it with me. And of course, I will share it with Benny and Wow, good luck to you. 45 years with type one, you're the inspiration. If you would like to tell us something always happy to get nice messages like this. I'm always happy to take constructive criticism as well. I do have a few people over the years who have yelled at me. But I think I'm pretty easy to find either on social media or via the email address. And you can always go to Diabetes connections.com and get all the contact information there. But Ruth boy you made my day

All right, we're gonna talk about using glucagon what that is like, and Bonnie's really interesting story in just a moment. But first Diabetes Connections is brought to you by Dario health. You know, over the years, I find that we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. And that's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you all the strips and lancets you need delivered to your door one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions for how to succeed, get the diabetes management plan that works with you and for you. Dario has published Studies demonstrate high impact clinical results, find out more go to my radio.com forward slash Diabetes Connections.

My guest this week is here to talk about using glucagon and I think we can all From that, but she has another important story that I don't want to gloss over. Bonnie O'Neil has been part of the diabetes community since before she was even born. bit of a warning, this may be hard to hear Bonnie's older brother died when he was eight, his type one went undiagnosed until it was too late. Now, this was back in the 1960s. But we know that's still gonna happen today. Her older sister was later diagnosed, she survived and is still thriving now. And Bonnie has a new book out. It's called chronic hope. So there's a lot to unpack here, including that very valuable information about her family's experience with glucagon. I found this to be a very valuable and eye opening conversation. And I hope you do too. Bonnie, thank you so much for joining me. Congratulations on your book. And I'm excited to learn all about you. Thanks for jumping on.

 

Bonnie O'Neil  5:48

Thank you for having me. I'm excited to be here today. Stacey,

 

Stacey Simms  5:51

tell me about your son. But he's doing now because he was diagnosed as a little kid. And he is all grown up now.

 

Bonnie O'Neil  5:57

Yes, I've lived all the stages with him. So he was diagnosed as a five year old and he is now 24. So he's living not too far away from me about 15, 20 minutes, which I guess is every T one D mom's dream when their kid grows up that they live independently, but yet, we can still get our eyeballs on them and our arms around them from time to time. So yeah, he's doing great.

 

Stacey Simms  6:22

You it's funny because being diagnosed, what does that 19 years ago? Isn't that long ago. I mean, my son was diagnosed 14 years ago. But in some ways, it feels like a different world. Do you mind taking us back to that time, if you could tell us the diagnosis story. And I'd love to also talk about what you all started in terms of management.

 

Bonnie O'Neil  6:41

Sure, yeah, that's actually an interesting story. So I have diabetes in my family. So my brother was unfortunately died in the diagnosis process when he was eight years old. And that was before I was born. And so my parents had me in their 40s, basically to, you know, replace the child that they had lost. And then my sister was diagnosed when she was 16. And I was eight years old. And so I just grew up with it. We grew up with this fear of it being there. So I was always on the lookout for it. And I remember my first pediatrician when I want to have my first child, I said to him, so how do we test for this thing? Because I don't want it to be in in my child. This wasn't Austin. This is my oldest son, Alexander. And, and he's like, oh, Bonnie, you know, it comes on acutely. We can't just run a blood test every every few months, but you'll know it if you ever see it, frequent urination, and intense thirst.

And so I was always looking and so the day that I noticed that in my son, Austin, you know, obviously, there's the major panic, but I had grown up through my three pregnancies, I had done the urine testing for gestational diabetes. And so I knew exactly what to do. I went to the pharmacy, I bought a test kit, and I dipped Austin's urine in it, and it turns deep crimson. And so I diagnosed him at home freaking out going to the doctor and saying, they're like, calm down. This is Odile, like it, maybe it's not type 1 diabetes. I'm like, Well, do you know what else it could be? And so we, you know, I bundle up the three kids and we're living in Connecticut at the time, I took them over to the pediatrician. And he didn't have ketones, because we caught it so early. And so their practice was leaning into something that they told me was what Yale was practicing at the time, although I have an endocrinologist friend from Yale, who assures me they never offered, I suggested that, but the thinking was, if your child doesn't have ketones, you don't admit them to the hospital. Hmm.

So we went home, we literally went home without so much of the shot of insulin. As you can imagine, I was just freaking out because my brother didn't make it through his diagnosis story. So I was like, you know if you can remember Terms of Endearment and Shirley MacLaine, like shaky over the crib. Yeah, that was me that night, just like leaning over my son and just making sure all night long that he stayed alive anyway, that the pediatrician, the endocrinologist that my pediatrician was able to find for us was one who really didn't work with pedes. The youngest children they saw were really about 15 or 16. So we saw him The following day, and the long acting insulin that he gave him was Lantus.

 

Stacey Simms  9:37

I was wondering if that was even approved, because I remember was not really 2000 so it was for little guys.

 

Bonnie O'Neil  9:43

Okay, it was not it was it was not under age 10 and so I don't I didn't know any of that you know, and so, so that was the first there's two things that were very interesting in our in our care different so that was the one and then when we got to CHOP the Children's Hospital. Philadelphia. A week later, I forgot to say all this diagnosis happened exactly one week before we moved house from Philadelphia. Oh

 

Stacey  10:07

my god,

 

Bonnie O'Neil  10:08

I never recommend that moving house be part of your diagnosis to be that as it may that was our case. And so when we got to CHOP our the endocrinologist there was actually very keen to see know what would happen to this child being on Lantus at age five, I'm pretty sure that it's going to work out well, I can't prescribe it. But he came to me that way. So I can leave him on his protocol. So that was interesting. And it worked beautifully. So my son never used NPH. And I had friends at that time, who were very familiar with that insulin and just told me how fortunate we were that he never had to be on that. So that was one thing. And the other was, so my sister, the reason I gave you the backstory on my sister was that I grew up in a family of using exchanges, where you counted your you didn't count carbohydrates, but you looked at food, in terms of whether it was fat, or protein, or carbohydrate. And you gave each one an exchange. And so I was used to that world. And I literally was given a counting book that had both on it, it was the exchanges and the carbs. And it was kind of you could do it however you wanted. They were recommending I just use the carbs, but the exchanges were there as well. So that was interesting. Oh, and then there's a third one.

 

Bonnie O'Neil  11:33

But I remember. So his diagnosis was shortly after the DCCT trial, results came out and talking about intensive insulin therapy and how important that was. And I remember several visits, going in and talking to my CDE and saying, I'd really like Austin to be on that intensive insulin therapy. And she would, she would look at me like I had 12 eyes and like to say something, and I didn't understand what she was saying. And she didn't understand what I was saying. And it was many months later that I realized that Austin was

 

Stacey Simms  12:11

using Lantus and short acting together. Yes, exactly, was

 

Bonnie O'Neil  12:14

exactly. So yeah. So I was sort of living in some a couple of old paradigms and had to get with the program pretty quickly. Yeah,

 

Stacey Simms  12:22

but what a transitional time. Here was that that he was diagnosed,

 

Bonnie O'Neil  12:26

it was 2002. Yeah. And I'm so thankful I that is it is that so spot on Stacey, because just a few years earlier, and and the story would have been very different. My sister's story is very different. Sure.

 

Stacey Simms  12:37

And let's talk about your family for a moment. If we could be there's so much information there. You mentioned your brother, gosh, I can't I'm not even sure what to ask. But he died before he was diagnosed or during his diagnosis story. Was

 

Bonnie O'Neil  12:48

this in the 70s? The 80s Yeah, it was 1962

 

Bonnie O'Neil  12:57

Yeah, yeah. So my sister was six years old, my my sister Barb, and my sister Johnny, my brother, Johnny was eight. And so it was Christmas week, and my sister had the stomach bug. And a couple of days later, after she got better, my brother started throwing up. And they assumed that he just had the stomach bug as well. And he may have had that, but it clearly he then slipped into decay. And so by the time he got to the hospital, which was actually New Year's Eve, what he was in a coma. And so he passed away three days later, to make the story even more unbelievable. My mother delivered my sister Betsy, just nine days after that.

 

Stacey Simms  13:43

Oh my gosh. Oh my goodness. Yeah. You know, DKA is I don't have to tell you this. You know, it is the most dangerous time for people with type one and it's amazing to me how now. Gosh, we are you know, more than 50 years after what happened with your family with your brother? Yeah, we are still having something like 30 to 40% of people who are diagnosed with type one diagnosed in DKA, I know you work a lot are you you've written a lot with beyond type one. You know, are you involved in efforts? Do you see the you know the DKA awareness that's something that you you talk about.

 

Right back to my conversation with Bonnie and we are going to hear her talk about glucagon in just a minute or two. And when you hear her talk about the emergency redbox, please remember, there are more options now and Diabetes Connections is brought to you by one of those by Gvoke Hypopen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary and that's where Gvoke Hypopen comes in. It's the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use. Find out more go to Diabetes connections.com And click on Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma, visit Gvoke glucagon.com slash risk. Now back to my conversation with Bonnie and I just asked her about her family's tragic experience with DKA and how that's influenced her with what she does now in the diabetes community.

 

Bonnie O'Neil  15:22

Yeah, I mean, I do write for beyond type one, and I'm very active with JDRF. I'm on the board of the founding chapter, the greater Delaware Valley chapter. And I know that we're doing a lot of advocacy work around that and, and even just trying to get the shift in titling someone has type 1 diabetes, a JDRF, has done a lot of work around that, and is seeing that that shift so that it's, you know, reframing it, so it's not Oh, they got diabetes, or my son didn't get diabetes on June 19 2002. That was when we discovered that he would be insulin dependent for the rest of his life. He was developing the disease before that. And so we're trying to change that language. I think we're making progress. So that there's there's an understanding that you are, you know, certainly with some of the antibody tests, that testing that is being done now to be able to know that, you know, this person's body is being set up to get the disease, you know, if you have, I think it was three out of the four markers. It's, yeah,

 

Stacey Simms  16:31

well, and I was gonna ask you about that, about T one detect, we just did a show on that. We did an episode on that a couple of weeks ago. And when you think about something like that a person who has type one in their family, like you had and was so front of mind, I would imagine that you would have taken advantage of that with your kiddos, you know, years and years ago.

 

Bonnie O'Neil  16:48

Yeah. And, you know, back then, and that was something that I asked my endocrinologist was, so should we do any sort of testing and their response, and I had to agree with it was, well, there wasn't anything that they could offer. Other than Gee, I'm really sorry, it looks like your child is probably going to get type one. So the way I've handled it now, as a mother of two adult children who don't have diabetes, is that decision is yours. If you want to be tested, we can get you tested. If you don't want to, I have to respect your decision.

 

Stacey Simms  17:25

One of the things I really was looking forward to talking to you about and looking forward as a term I really should not use there. But I was very interested in is you were one of the few people I know who has had to use glucagon on their child, and then wrote about the experience. So I really appreciate you talking about this publicly. It is a fear that so many people have, you know, we have never had to break out that red box. And I'm so thankful for that. Would you share that story with us? You're even at home, right? You're on vacation?

 

Bonnie O'Neil  17:54

Yeah. And I'd be happy to because you know, it's a it's a story that still brings up a lot of emotion in me, but it does have a happy ending. And there are some good takeaway points for your listeners in terms of preparedness. So yes, I'm happy to share the story. My family went on vacation to Costa Rica. So it was my oldest son's first year in college, Austin, that would have made him a sophomore, I think in high school and my daughter would have been eighth grade. And we realized that all the spring breaks were aligning all three kids were in three different schools. And we're like, Yes, let's go and do something fun. So we plan this, this sort of dream trip, you know, where you're going to be renting, staying in a treehouse. And like, I'd have some time at the seaside all kinds of great stuff. So adventure, but fun. Yeah, so we get there and the very the very next day, I think we got there like late afternoon. So the next day, spent a little time poolside and then decided to go to this restaurant for lunch that was literally like an oasis on the seashore. So like in the sand cluster of trees and this restaurant was in these trees on the sand. And so it's just a walk up the beach, it was probably, I don't know, 20 minutes of a walk.

We get up there. My son Austin actually ordered the only sensible meal he ordered a pizza which is cooked my husband and I ordered cbj which is raw and my other two kids ordered some sort of salad again raw and when you're in a developing country, you should go cooked rather than right anyway. So you know it was a big piece of pizza and or you know, personal pizza. And so we give this was before wearing a Dexcom so we have no arrows indicating the dress. In which his blood sugar is going, we just have a blood sugar of somewhere around 250 probably. So we have to give a nice correction dose, I have to give the combo bolus that we were doing for the pizza to accommodate for the, for the fat. So it's gonna be dripping in for a while. And I didn't factor in the walk that he had just had. So right after lunch, he and his brother asked to go into the sea and play. I'm like, Sure, that's fine. So they did about five minutes later, he came back and he said, I feel shaky. So I tested him and he was in the mid 60s. And we ordered him a coke. And he started to drink. And still his blood sugar wasn't going up. Eventually, he drank the whole big bottle of Coke, and still really wasn't going up. And I was getting a little suspicious. And then he said, I don't feel well. I feel nauseous. And then I knew we were in trouble. And your mind just immediately goes to like, the cheese was tainted. The basil on it hadn't been washed and was in was unclean. Something, you know. Yeah. And I knew that he had like, over 10 units of insulin on board. And then the next thing I know he he starts vomiting. And I mean, pardon me, but projectile vomiting. And this is one of those moments when you just snap into too high alert gear. And it's to my son, and my, my oldest son and my husband go back to the hotel, get the glucagon because of course the glucagon was with us. But it wasn't with us.

 

Unknown Speaker  21:39

Right? It was

 

Bonnie O'Neil  21:40

in the hotel, helping the pillows in case they had a low but now it was it was tucked away with all the other supplies. And so the two of them ran back along this shoreline. And I knew it would have to be at least 30 minutes before they would get back. Right? Because there and back. And actually my son got back before my husband did because the roads were so rutted and so circuitous, that it just took him forever, it seemed to get back in the car. So all the while I don't speak Spanish, I speak fluent French, I don't speak a lick of Spanish. And all of these people were trying to help me and they didn't speak any English. And they all they could do is bring towels and bags for my son. And you know, I knew that if he drank any more, he was just going to vomit it. So there was no point in trying to give him more to drink. And so we just waited. And I have never seen a sunset so fast in my life. Oh, I don't know if it was where we were located on the Costa Rica coast. I know we were having a late lunch. But anyway, it just started to get dim. And by the time my eldest son got back with the the glucagon and cuts all over his bare feet, it was just all I could do to stop my hands from shaking, and mix that glucagon and get it in hand. So point number one was, when you go on vacation, make sure that glucagon doesn't stay in your hotel, keep it on your person, you just never know. Point number two with practice that injecting or at least mixing up glucagon. Every year, when your glucagon expires before you throw it away. Don't neglect that gift of having the opportunity to practice drawing it up because I was going to ask you,

 

Unknown Speaker  23:27

did you ever do that?

 

Bonnie O'Neil  23:28

I did it every year, I never threw one away without mixing it up. Because I knew that if I ever needed it, I wasn't going to be able to stop and read the directions. I just needed to know what to do. Because the only reason you would use it is if you're in an emergency. And in an emergency. We don't think so clearly, or our hands are shaking, you might be thinking but your hands are shaking so much that you just need to go from muscle memory. So eventually my husband got their like gate. So I drew it up. I gave him the glucagon. My husband got there. And we're in the car. And I was just surprised Stacey, his blood sugar didn't come right back up. I expected it would come up to like, I don't know, a perfect 110 would have been nice. You can even give me a question 150 I'd be happy with and if it didn't, it was I don't even know if it hit at oh well. And so I remember being in the dark in the backseat of that car just like trying to get every little whiff of the glucagon out and into him.

And, and then I just realized I don't have another glucagon. I brought one. I didn't bring two and he's not in a stable enough place. Like I we need a doctor. So thankfully, this was probably the nicest hotel we had ever stayed at. And and I'm really thankful because they had a doctor on call. So we as soon as we got back to the hotel, we asked the concierge to call for a doctor and he was there. Oh probably within 45 minutes, something like that. What did he do for you? Did he give him more like IV glucose? Yeah, so he unfortunately was this big, you know, had a big headboard, big posters on it, and like a poster board sort of thing. And he just hooked an IV up to him and tied it up to the to the bedpost. And so the following morning, when he came back, Austin had a fever by that point. And he said, You know, I can't rule out that this isn't appendicitis, you have to get an emergency surgery in Costa Rica, this was not what I had in mind. And long story shorter, what ended up happening was he said, You've got to get him down to the Capitol to San Jose, four hours back down the way we had come up, you know, just two days before. So we have to do that, you know, it could have been the fever could have been from the food poisoning, which it was, but he said, you know, we have to be safe, it couldn't be appendicitis or something else. And so that was the longest four hour ride I've ever had in my life.

 

Stacey Simms  26:02

Yeah, it was not appendicitis, it turns out to just be

 

Bonnie O'Neil  26:07

a lot it was it was just the food poisoning. And he spent three days in hospital. And there again, you, as a diabetes parent know more about diabetes than emergency room physicians do. And it's important that you know that and that you believe in yourself about that. My son, his freshman year in college had to go to the ER for the stomach bug. And there to the emergency room, physicians relied on me for what I knew about how to take care of his diabetes. And so when we were in Costa Rica, the attending physician gave me her cell phone number, and said, I want you to be in touch with me. If this doesn't come around, if his numbers don't go in the way we want them to, we're going to take the pump off. And we're going to do it our way. But I will give you it was basically I'll give you six more hours, I think this was like on day two or something. Because she was letting me manage his diabetes. Right? And but then she said, You know, we're gonna do it six more hours this way. And let me know how things go. And it did it worked out fine. So here's two more points coming to my mind when you're traveling. Don't just take one glucagon, you might need to use a second one when we were leaving the hospital. Among the other prescriptions that the doctor wrote for me. I said, Could you write me a prescription for glucagon because I use the only one I had. And clearly, my son didn't get a stomach bug. It was food poisoning. So food poisoning could happen again. And I want protection from that. And she looked at me with these beautiful, innocent eyes and said, Bonnie, we haven't had glucagon in this country in over 10 years. Wow. And so just don't imagine that it's going to be available for you. So travel with to glucagon when you travel. The other thing was, when we were in the hospital, the only ketone tests they were doing were blood ketone tests, they weren't doing any urine ketone test. So I had to wait until they would come back. You know, they weren't doing blood tests as frequently as we would expect to be doing our ketone tests. So again, don't just travel with a bottle that has maybe 10 ketone strips in it. I had a nearly new bottle of 50 ketone strips, and I was worried that I was going to run out

 

Stacey Simms  28:29

going forward. I assume you're filming like to travel? I mean, this was obviously a big trip and a big treat. Did you hesitate about traveling again?

 

Bonnie O'Neil  28:37

I don't think I'll go to Costa Rica. I'm nothing against Costa Rica. It's just the memories are. They're profound. I do try to pay attention to where there is a hospital, which is an easy enough thing to figure out. We have continued to travel that is for sure. In my book, I talk about another episode that happened after that, where he his insulin pump broke, and we were in France, and he had to get a we had to locate him a pump in a foreign country. So that's another fun story. But no, we've continued to travel, but I think it's just being safe, bringing your supplies with you and an abundance of supplies, checking to know where the hospital is. And I think it's it's just about being comfortable. Making sure that you feel comfortable where you are. Well, you

 

Stacey Simms  29:32

mentioned your book. Let's talk about that. Sure. Yeah. Oh, congratulations. That's Thank you.

 

Unknown Speaker  29:39

Thank you very excited.

 

Stacey Simms  29:40

Yeah. So why'd you call it Chronic Hope? Tell me about where that title comes from?

 

Bonnie O'Neil  29:44

Okay. Well, you might want to edit this out. I'm not sure so I was I was thinking about how much you know, I loved my my son and the care I give for him. This As a chronic condition and the title chronic love came to my mind. And that actually had been my working title for a little while. And as I was working on my book proposal, I did a little research little Google search on chronic love, and it was a porn site. So I changed the title. And actually, once I came up with the subtitle, chronic hope, is exactly what I'm writing about. We all love our kids, we do in a way that we show our love to them, especially as full time caregivers, that just cannot be disputed. But there's some times when we as the parents just lose our way on the hope journey. Because it's, it's so long and so complicated and can be so unforgiving. And we can be unforgiving of ourselves. The message really is hope for us.

 

Stacey Simms  30:57

I may have to lead with the chronic love, I think that forget about editing that out. That's pretty funny. Oh, my goodness. But you've had this story and you for a long time. I'm curious what caused you to kind of write it now to release it now?

 

Bonnie O'Neil  31:14

Yeah, good question. Well, I love to write. That's the first starting point. I've been writing for a number of years and have been honing that craft. And as I was thinking about what the next topic was, that I wanted to write about, it just felt like it needed to be a story that I've been living, something that was really true. And that it wasn't just something I'm going through now, which so many of my blog posts words like, you know, it's that short, quick blog post is almost like an instant word. It's like what you're going through at that moment, and you write, but I felt like I needed to write something where I had come out the other side, and actually had some wisdom to share. And once I sort of landed at that place, it was well, this is what I know better than anything else. And living this story out first with my nuclear family. And then with my family with my children, I just have been steeped in that for so long. I speak for the jdrf education conferences, that type of nation summit, and that one of the earliest ones that I did, I was speaking on the psychosocial impact of T one D on the family. And it was the first time I had delivered the that talk and I was I was sharing about, you know, my nuclear family and then Austin's diagnosis and how that impacted me. And I was just really honest, and, and raw, and I talked about my anger, you know, the disease coming back into my family, and just the challenges with my husband, when the two of us were not on the same page and the fear, I carried my need for control, wanting to control the disease, and all of these things. And as I'm looking up at the group that I was speaking to, like, everybody's dabbing their eyes, and sometimes, like really crying and at the end, one man said to me, So when's your book coming out? And I chuckled and kind of tucked that away. And it later, I think informed me very well as to what I should write about next.

 

Stacey Simms  33:32

What is your I mean, you have more than one son, and I'm sure they are your children are all featured in the book in their own way. curious what Austin? Right Austin? Is your son with time? Yes. I'm curious what what Austin thinks of this?

 

Bonnie O'Neil  33:44

Well, Austin is a man of few words that he's not

 

Unknown Speaker  33:47

going to do. Much.

 

Bonnie O'Neil  33:51

I made sure that in the advanced copies that I have, that he was, he received the first one. And he very graciously accepted it and then said, Thank you. He has congratulated me a few times and said he was excited. I did ask him before I really started the writing, and was just sort of outlining things. I asked how he felt about it. And he said he was fine. And I did say to him, and it's the Absolute Truth. If there's anyone who looks ugly in the book, it's me. It's never hand because I am raw with how I processed my emotions. Because one of the things I feel like in that for us, parents have a child that lives with such a complicated disorder. 24 seven, we take so little time to attend to how we feel, you know, because it's how can I complain when my child has to go through so much. And so we don't really ever name what it is that we're feeling and give ourselves permission to feel what we're feeling. And so then we can't really attend to it and move along from some of those stuck places and I really feel that the You know, the emotional health of a family begins with that center of the mom and the dad. And we need to get our stuff together so that we can create a healthy family emotionally.

 

Stacey Simms  35:14

I agree it's so interesting because we, as you know, an initial diagnosis. And though those first few years, we as moms, I think so define ourselves by diabetes, it almost seems like we have it like and you come to a realization that Yeah, do not be do not have diabetes, we do not have our child's experience. But it doesn't make the experience of being a mom of a kid with a chronic condition, any less valid. It's just a different experience. And I think I'm hoping, kind of saying the same thing you are in that once you realize that it's a mom, that it's okay to take care of what you are going through, knowing that's different from what your kid is going through, you kind of name it and take care of it and acknowledge it and talk about how tough it is. And right now until you can do that. It's so difficult. Yeah,

 

Bonnie O'Neil  35:58

it's a kid. It is. And I'm so glad now that there's such increased talk about soul care, because that at least is putting it into the forefront of everyone's minds now. But I think parents of a child with a chronic illness just really need that permission to say, I too need this soul care. I am going through mourning. This wasn't what I was expecting. I was expecting my child to have the freest life imaginable. And they still do. But especially in those early years, it's a lot, we have to mourn the loss of this perfect health we had envisioned for our child, and we have to deal with the fact that Yeah, we are tired,

 

Unknown Speaker  36:42

a lot.

 

Bonnie O'Neil  36:43

And it's okay to say I'm really tired. And I think even under, like coming to terms with the fact that a lot of our friends just aren't going to get it. And there's a loneliness that we carry here as the caregivers of our children. And it's okay, and it's not it's once we begin to name it and look at it and explore it a little bit, and how it's affecting us. That's the beginning of healing and freedom.

 

Stacey Simms  37:09

And I meant to ask you earlier, and it's okay, if you don't want to talk about this at all, how is your sister doing?

 

Bonnie O'Neil  37:15

She has struggled in the last few years with some complications. She has had, I believe gastroparesis for, I think it's close to 10 years that I think, went largely undiagnosed, and then has been quite problematic in the last few years. She's begun going actually to my son's retinal specialist for some treatments for her eyes. And her second or third treatment, this most recent one, they found that the retinopathy had had gone away. So I'm very thankful for that. So she just maintains the most positive attitude through shouldering this disease through the longest time, but I can see that it you know, it has taken its toll.

 

Stacey Simms  38:06

And so in your family, you know, you have two people diagnosed at different times, but still almost, it's hard to describe how different it is. We talked about Lantus And then off air, you and I were talking about control IQ,

 

Unknown Speaker  38:19

right? No,

 

Stacey Simms  38:20

just a guess of reflection before we go of the technology and the advances of not only I assume your sister has is using different tools than she did when she was first diagnosed.

 

Bonnie O'Neil  38:30

She is for sure. And I think that has been a great asset to her. So yeah, she's using now the Omni pod and the Dexcom as well. I am so grateful for the time in which we live and for the medical advancements that Austin has been able to take advantage of. I know one of the my friends through jdrf. She said recently, I am so thankful for all of you parents who came before our family did who paved the way because my daughter her daughter was diagnosed at age two or three. I've never known what you have known. She's had the Dexcom as long almost as long as she's had diabetes. I don't know the sleepless nights that you know, I'm confident now like that each generation or micro generation is going to be able to say that to the ones who came before them that we're going to continue to advance and are the lives of our loved ones are going to continue to get better. And that also just gives me a lot of hope.

 

Stacey Simms  39:36

That's great. Well, thank you so much for joining me, Bonnie. I really appreciate your time. Best of luck with the book. I'm really excited for you. There's nothing like a book launch. And I hope we could talk again soon.

 

Bonnie O'Neil  39:47

Thank you so much. This has been such a joy to be with you. Thanks,

 

Unknown Speaker  39:50

JC

 

Announcer  39:56

you're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  40:01

Learn more about Bonnie and her book and her story at Diabetes connections.com. In the episode homepage, as always, I put lots of links and info there, you could read an episode transcript, if you prefer to. Some people just like to read rather than listen to that it's fine by me as long as you get the info. In conjunction with this episode, I have a contest on social media. This is on the Facebook page for Diabetes Connections, not in the group this week. This is just on the page. And you can win a copy of her book chronic hope.

I also want to point out and I know we had a commercial in there, but I think it's really important especially for newer families to know that there are now options when it comes to using emergency glucagon because since the 60s, we've had the red box or the orange box, which were basically the same thing as you heard Bonnie talked about there mixing it up, and the big needle and all that stuff. There are new options. gfo hypopyon, is one that I spoke about, they are a sponsor of the show, they are a you know premixed ready to go shelf stable glucagon. And it's very easy. It's all in the panel ready, nothing to mix and you don't see that huge needle, it's very different. It looks more like an epi pen or an insulin pen and simple to use. There's also baxi me, which is a nasal spray. And that is also very easy to use, I will link up more information about that.

I just think it is enormously important to know that these things exist, knock on wood, knock on my head, knock on anything I can find. We haven't ever had to use emergency gun with Benny in 14 years. But as Bonnie illustrated, you just never know. So it's so important to be prepared. I'm also really interested in the future of this stuff. Because I keep hearing more and more people say that we're gonna be using it not just for Super lows, right? I mean, like me, you were probably told if He's unconscious, you know, if you can't keep anything down, that's when you use it. But now there's a new school of thought about using these in much smaller doses for less severe lows. So I don't have a lot of information on that. So I'm not gonna talk too much more about that. But I think that is very interesting. And something to watch. And certainly glucagon in an insulin pump is something that, you know, companies are working on, most notably the iLet from beta bionics. So, as we say all the time, stay tuned.

Tell me something good, a big honor for a wonderful member of our community. And that's about Minecraft to just ahead. But first Diabetes Connections is brought to you by Dexcom. And you know, when Benny was very little, and in the bathtub or in the pool, anytime his hands would get wet. I always noticed his fingertips. You know exactly what I mean. Right? We poked him so much. They were just full of these little pinprick holes. It looks horrible. I mean, you can really see it when he got wet at age 16. I am not inspecting his hands. I rarely see his hands anymore, but his endocrinologist does. And we went for a checkup in early January, his fingertips are normal. It's incredible. We've been using Dexcom for seven years now. And with every iteration, we've done fewer and fewer finger sticks G6 eliminates finger sticks for calibration and diabetes treatment decisions that we used to do 10 finger sticks in the past. It makes me so glad that Dexcom has helped us come so far. It is an incredible tool. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions or more, go to Diabetes, Connections comm and click on the Dexcom logo.

 

Over the almost six years of this show, I have been so fortunate to have some guests that really made an impact on me, who I'm really lucky, I think to call friends now, but who I turned to again and again for information. I know I can rely on them. They'll give it to me straight and in a caring way. And one of those people is Dr. Stephen ponder. Many people know him because of his sugar surfing talks and books, but he's a practicing endocrinologist. He's right there in the thick of things in Texas when he can pray and hopefully post COVID runs a fabulous diabetes camp and has lived with type one himself for more than 50 years. He got a really great honor recently, and he says he was stunned to learn that he has been selected for a big honor at the University of Texas Medical branch in Galveston. This is where he went to medical school. And then he stayed there another nine years where he says he became a husband, father, pediatrician and pediatric endocrinologist and the award is the Asheville Smith Distinguished Alumni Award. He will receive that formally in June during the graduation ceremonies at Galveston and the to read his post about this was it was really inspiring he gave a lot of credit to others and he finished by saying never in my wildest dreams did I imagine an honor such as this so congratulations to Dr. Steven ponder for a great award well deserved that's just fantastic.

Another Tell me something good comes from Samantha Merwin who is the mom of Logan the elbow bump kid we've talked to them on the show before she is working to roll out a national program about Minecraft. This is a Minecraft t Wendy play project. She says she had a successful pilot and She's working to roll it out nationally, working out a lot of logistics apparently to roll it out for people outside of her home state. So more to come on that. And she's also been working on a project with the college diabetes network along with Cigna. This is a really cool program all about mentorship applications are going to open in February, I will link up the page that is already there for college diabetes network. Basically, it's a program for junior and senior undergraduate students, you got to be current junior or senior, and it pairs you with a Cigna employee who has a similar career interest. So if you want to learn more again, I'll put a link in the show notes. But this was really great. Samantha love the work that you're doing here definitely going to help a lot of people and keep us posted on both of these programs. My son used to love Minecraft he still plays it but man when he was like 12 or 13 that was all they played. It was pretty wild stuff. I don't know what he's moved on to now. Although that's a lie. He his friends are playing Uno. They were screaming and carrying on get the card game Uno. I asked him I was like why are you so loud? Kind of Be quiet. I figured there's like shooting people or doing something crazy. They're playing card games on the computer? I don't know, is there any sign that you're getting older than you don't understand the games your kids are playing. If you have a Tell me something good story, please send it Stacey at Diabetes connections.com or posted in the Facebook group.

 

Little bit of housekeeping before I let you go, starting next week, I'm going to be doing something different. I'm going to be releasing an additional episode every week. So we'll have the regular interview on Tuesday, the long episode with segments like Tell me something good and innovations and all sorts of stuff. The regular episodes on Tuesdays will continue that way. I'm adding an episode on Thursday. And these are going to be what I'm calling classic episodes. If you're a sharp eared listener, you will know that I dropped in a couple of these last year kind of as a test. They are interviews from several years ago, as I mentioned, we've been doing the podcast for almost six years now. This is Episode 347. So there's probably a couple that you have missed along the way. And what I'm going to do is put context to the interview, you know, kind of catch up with the person let you know what they're doing now, and then replay the interview from several years ago, we have really great stories from a lot of really terrific people that you may have missed. And this way, if you're newer, and you haven't heard it, it's super easy enough to scroll back. I mean, Apple podcasts only shows you 300 episodes Anyway, you don't have to go anywhere. It'll be delivered right to you. And you can catch up with some of the really cool people and stories that I spoke to back in 2015 and 2016. So that starts on Thursday, February 4. Right now I am scheduled to do it for about half the year. We'll see how it goes. And you'll have to let me know what you think. Because after all, the show is here for you. If you don't like it, don't wait half the year. Let me know right away. If you do like it, of course I would love to hear about that as well.

Next week, you'll be hearing from Lily I talked to the folks from Ypsomed a couple of weeks ago. Ypsomed and Lily are partnering to bring a new insulin pump to the United States. It's not a new insulin pump elsewhere in the world, but it could be here as early as 2022. We're going to talk about why Lilly decided to pivot and go in this direction. That is next week. And thank you to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Benny  48:29

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

Jan 19, 2021

It's been a year since Tandem Diabetes Care released their Control IQ software, hybrid closed loop technology to help increase time in range. What have they learned about how people are using the system? Molly McElwee Malloy, Manager of Clinical Outcomes at Tandem Diabetes Care, is back on the show to answer your questions and to talk about what's next in the Tandem pipeline.

Tandem Diabetes Pipeline

What diabetes tech to expect in 2021

Our innovations segment: using your CGM to get more out of exercise and.. a new study for people with rare forms of diabetes..

CGM and exercise

RADIANT Study 

Fearless Diabetic Summit

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

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

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Episode Transcription:

Stacey Simms  0:00

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

 

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, it's been a year since Tandem diabetes released their Control IQ software, hybrid closed loop technology to help increase time it range.1 since that day, as we do around here. We've all been asking for changes. Tandem says they're listening,

 

Molly McElwee Malloy   0:43

can it be more aggressive? Could it be less aggressive? Good, you know, do this or that I pick my targets. Could I put a timer on exercise? Could I do all that? We are looking at all of those things. I would say nothing's off the table right now.

 

Stacey Simms  0:56

Molly McElwee Malloy, manager of political outcomes at Tandem is back to talk about possible changes to controlling q to answer your questions, and to look ahead at other tech in the Tandem pipeline

In our innovations segment using your CGM to get more out of exercise, and a new study for people with rare forms of diabetes.

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

Welcome back to another week of the show. I am so glad to have here. If you are just finding us if you are new to Diabetes Connections, welcome. We aim to educate and inspire about diabetes with a focus on people who use insulin, my son was diagnosed with type one right before he turned two back in 2006. My husband lives with type two diabetes, I don't have any type of diabetes, but I am the broadcaster in the family. And that is how you get the podcast.

It's funny to look back on this year. Because not only did none of us have any idea what 2020 would really be like, but more to my point here, as I'm taping this on January 15. And planning to release on the 19th. This was a time when many of us in the community were just refreshing the Tandem page over and over again. Because Control IQ had been approved. And many of us had already talked to our endocrinologists about it and tried to get the prescriptions. And if you remember that time, especially on social media and some of the Tandem groups, it was a bit bananas. But we have been using Control IQ for a year. Now Benny got his set up at the very end of January, as I recall.

And they are not a sponsor of the show. They do not pay me to say this. But it's been absolutely amazing for us, it has really made a big difference. And you know, I don't share numbers. I'm not all about the numbers and straight lines with him. But I do want him to be healthy. And I think we were doing great before but just back from the endo this time around about a week ago as you're listening now, his lowest A1C ever. And the time before that was his previous lowest A1C ever. And the best part is he's doing less work. And I am I swear I'm doing less nagging. If you ask him, he will tell you otherwise. But I promise you it's true. So I'm thrilled to talk about control IQ. I'm really excited that all of the pump companies are moving in this direction, it would be amazing for everyone to have access to this kind of technology. That is a discussion for another time. Probably

Another little bit of personal news, Benny got his driver's license. I know I can't believe it either. Here in North Carolina, you get your permit. If you want at 15, you can actually take drivers at 14 and a half. But you get your permit at 15. And you can get your license at 16 right now, because of COVID. They are not even doing road tests. I know isn't enough bananas. But what happens is you get your basically your junior driver's license, you can't drive at night, which is what he would have been issued anyway, if he passed a road test. And they cannot move on to the next level the after nines until they get a road test. In fact, I believe what he has expired in six months without a road test. So he'll have to take one. He's a decent driver, you know how superstitious I am. So I'm not going to say more than that. But I'm confident we've got a whole system with diabetes we have we've had these discussions, and he's just so excited about it. And I'm really thrilled for him that this step has taken but as a parent, and for those of you who have known him since he was two, how did this even happen?

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

 

My guest this week is the manager of clinical outcomes at Tandem diabetes care. And she lives with type one, Molly McElroy is I am grateful to say a frequent guest. And if you're a longtime listener, you know, her career and her life has been shaped by the technology that is now control IQ. That's not really an exaggeration. She was one of the first to test out an artificial pancreas system. And she changed her career path because of it.

And my first interview with Molly was in 2016, when type zero technology announced their partnership with Tandem, and I will link up the previous episodes, we've done a bunch with her all about this software, you can find those links, as always, in the episode, show notes, wherever you're listening, the app should have show notes. If it's difficult to find, just head over to Diabetes connections.com. And every episode now has a transcript and lots of links and notes to help you out. Please stay though, to the very end beyond the interview because there are a few questions Molly had to check on. She couldn't answer at the time. And they sent me that information. And I will give that to you later on in the show. Of course, as I said, there's a transcript so you can check it out that way as well.

Molly, thank you so much for coming back on to talk to me a year ago, you and I spoke about Control IQ it had basically just been approved. And you were kind enough to jump on that in late December. So thanks for coming back on.

 

Molly McElwee Malloy   6:26

Oh, you're welcome. I'm very excited to be back on this.

 

Stacey Simms  6:29

Yeah, well, lots of lots of questions, of course, from listeners and from me. But let's just start by taking a moment to kind of reflect what's the last year been like for you guys at Tandem?

 

Molly McElwee Malloy   6:39

You know, it's been really crazy great is the best way I could describe it. There's a lot of excitement for control IQ, and rightfully so. And there's a lot of the feedback via social media about people's experience. And it's been really, overwhelmingly positive. It's also been kind of emotional, because this has been a rough time for everybody, right? Like last eight months or so that we've been in. I've been calling it seclusion. But it's, you know, everybody working from home. And that's been a really high stress situation, particularly for people with chronic disease, and myself included. So I've really been grateful that control like has been out and approved. And a useful tool during this time. Because just you know, stress influences glucose. And so it's been a big, huge help for a lot of people, particularly during this time. So it's been crazy great. And it's been busy. But sure, I would love to experience control, like you and all the interaction with healthcare providers in person. But it's been great just talking to people on the phone or on video or teams. And it's been really good that we've been really busy. Yeah, sure. All right.

 

Stacey Simms  7:43

So what I'd like to do is take a look back, get some information from you about control IQ, and then kind of take a look forward because we know the product and the product line is evolving. So let's just start by asking you, what have you learned about control? IQ obviously had all the study information. But looking back at 2020? How are people using it? How is it working out? What is the data telling you,

 

Molly McElwee Malloy   8:07

you know that this is the funniest thing, and this is not something that you can plan or you could guess but our real world data is better than our clinical trial data. And I'll say that again, because it's just, it feels a little crazy to say that out loud, because that's usually not the case, right? clinical trials are very well managed. And you know, there's protocols and everybody's sticking to stuff. But it turns out when you put this put control, like you in the real world where people are experiencing significant hyperglycemia, or even hypoglycemia, it does even better. So I mean, the clinical trial population was pretty well controlled, right? And we were still able to improve on that. But when you put it into the real world where people are doing, you know, they're real people, they're doing all kinds of real things, and we're able to get even better outcomes. It's surprising. It's awesome. It's a really cool experience, and definitely unexpected.

 

Stacey Simms  8:59

Yeah. So let's dig into that. Can you tell us in terms of I guess you're measuring things like time and range? Can you give us a little bit more information about what you mean by they did better?

 

Molly McElwee Malloy   9:09

So for one, it's it's time and proven time and range, right. So in our pivotal trial, we had about 11% over baseline improvement on time and range from a very good well control group, which is awesome. But in real world, it seems to be closer to 13%. Sometimes a little bit better. We've got some results from D Q&A which is a third party vendor that does research and they're affiliated with Diatribe. And they did some survey results about time and range by insulin pump therapy and it's been really cool to have like a 33% getting 81 to 90% time and range 31% getting 71 to 80% of 11% getting 91 to 100% which is crazy. So you know all of that And it just is amazing because it really does. It whips up on the competition. But it also just shows that, you know, this works even better in the real world.

 

Stacey Simms  10:08

Any idea why? I mean, are people using sleep mode? Are people figuring out different ways to use it better? I'm just curious what you think might be happening?

 

Molly McElwee Malloy   10:19

Yeah, I don't think it's the using sleep, you know, 24, seven or something. I think using a sleep schedule has been very successful. But I think the reason for this is that largely, and not everybody was correcting aggressively, right. So while there are that subset on Facebook, or social media that are trying to get that, you know, super, super tight range, there are plenty of people who, between meals, we're not correcting, and now they're receiving those corrections. And there's some evidence that we were able to publish. And I think we showed an ADA, but that persons with type two diabetes are benefiting from this. And that's because they're getting the corrections between meals, which we don't typically ask people with type two diabetes to do that. So getting that tighter control is really, really helpful. And again, not everybody does that.

 

Stacey Simms  11:11

Yeah, I have one of those people in my house, who not everybody does that. I mean, we I tease Benny all the time, and he knows that I I talk about him on the show like this, he will happily, let me say that Control IQ has helped him significantly because he often boluses after he eats or forgets to bolus or didn't correct between lunch and let's say, bedtime, even if he gave himself insulin for dinner. And it really has made that burden lighter. And it's certainly not perfect. I have friends whose kids are much more engaged with their diabetes, I guess is a way to say it where they, they will you know, they'll bolus every two to three hours, or they're looking at their watch every 20 minutes. But he's never been like this. And it's really improved his quality of life. Because I'm not, I'm not willing to make him do that.

 

Molly McElwee Malloy   11:57

Well, and if you think about the long term, decrease the complications because of this going on in the background is sort of automating this. I mean, that's a huge improvement and quality of life. One of the things I'm really excited about is to watch this going forward to see how we can measure decrease long term complications from this, you know, the not just like seeming variability, but with those micro macrovascular complications. But this is long term complications from diabetes from having high blood sugars. And, you know, that's just something that we've never been able to really control for before. So this is going to be very cool to watch and see how it plays out.

 

Stacey Simms  12:36

No doubt. All right. We've gotten a little bit inside baseball, but I think most people listen to the podcast will understand some of the shorthand, I'll try to explain as much as I can. But if there are things that we mentioned, that you are not understanding, I'm going to link up lots of stuff in the show notes. But one of those things is sleep mode. And I just want to take a second to talk about that. Because you and I, when we talked last year, you said that there were some people using sleep mode, which will adjust basal but will not give you boluses, they were using a 24 seven in the studies, you called them sleeping beauties. And there have been many, many people in the real world settings who use that we do not we actually don't laugh at me, we stopped using sleep mode for sleep. Because as great as it was working for Benny with what you called a seclusion, we found that he was eating at interesting hours, you know, 1am 3am I mean, he went full nocturnal for about a month there way back when I want to say like June or July. And so we turned off sleep mode because we needed that bolus power at weird times. So it's been really funny how you can kind of use the system in a way that works for you. But getting back to my question, what have you learned about sleep mode? Is there anything you can share with us?

 

We'll get her answer to that question and what she can share in just a moment. But first Diabetes Connections is brought to you by Dario health and we first noticed Dario a couple of years ago at a conference. And then he thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket, unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it and personalized reports. Based on your activity. Find out more, go to my daurio.com forward slash Diabetes Connections. Now back to Molly answer my question - we were talking about what Tandem has learned about the use of sleep mode?

 

Molly McElwee Malloy   14:44

Yeah, yeah, there's lots like I've learned I just want to share quickly that I've seen in looking at lots of reports with lots of health care providers that during what I've been calling seclusion or hibernation this this COVID time that people schedules are very, very different. They're eating at different times. And that sleep, as originally intended right is not what it looks like during this time. So there's a lot of people who have benefited from not using sleep when they're eating right through the night, or snacking, or staying up extra late or, like really altered schedules, right. So we've seen that some people have turned sleep off, and that's been successful for them.

So sleep, what sleep is doing is it's based off of fasting metabolism. And it's using this 112 to 120 sort of target. And it's really, it's a really tight range. But it's doing this through modulating basal. And the reason it's only modulating basal and not giving corrections is because someone is sleeping, and they're not, we're not anticipating postprandial spikes, and we're not anticipating exercise or activity. And so it's really, really meant for when you are kind of static, and you are sleeping. Now, that said, Not everybody's sleeping normally, particularly during COVID. And so it doesn't always work that way. And then some people want to have sleep 24 seven, so that the basal is modulating, but that they're responsible for the corrections. And if you're willing to glance and see if you need a correction every two hours, that can work really well. But if you want to alleviate that burden, right, then, then sleep maybe isn't the best thing for you to use 24 seven, so it really depends on the user and the user's interaction.

But the other thing I wanted to mention about sleep for users is that one of the things that we've noticed, and how people are using sleep is that if their schedule have has changed drastically with COVID, that they may need to reevaluate that sleep pattern as to what time it is. So for instance, if someone previously wasn't snacking at 10pm, and now they are starting sleep a little later may make sense because they may need an additional correction before going to that, you know, that's one circumstance I've seen a lot of. And another one is, there are some patients who can't go to bed with a positive IOB. And what I mean by that is, you know, going to bed with any insulin on board that is not related to carbohydrates, right, so for correction, and for them starting sleep sooner, and you know, obviously not eating right before bed, makes sense, because they're not getting any corrections before bed. So there's sort of really two very different types of insulin sensitivities, right, the person who's eating and then needs the additional correction, who may want to start sleep later. And then the person who isn't eating after dinner, and really doesn't want any additional corrections before they go to bed, starting it sooner. So I've also seen that very interestingly playing out in the public realm, and it's it's interesting to see how people are using it to make it work for them.

 

Stacey Simms  17:44

Yeah. What about exercise mode? Have you learned anything about how people use that we don't often use exercise mode.

 

Molly McElwee Malloy   17:50

Yeah, exercise is interesting, because it's sort of like a temporary basal rate, if you will, which you set indefinitely, right? until you start it and you stop it. And we hope in future versions, we'll be able to put a timer on this. But for right now, you start and stop it. And so you could be in sleep for 24 seven, if you wish, I have seen that be useful when people want to keep an a higher target, and want to be a bit more aggressive and preventing hypoglycemia, right. So that's an interesting thing that has and can be used selectively, whether it's for exercise, or just because you would like to keep up, you know, you need to be a little bit more conservative on the hypo end. And you really do want to have a higher target, you know, and COVID times looking at how particularly the aging population is trying to stay at home rather than go into care, using something that's going to keep them a little safer on the lower end and elevate that glucose level a bit has been useful, and just allowing people to remain, you know, in a safer range with preventing hypoglycemia.

 

Stacey Simms  18:51

I'm curious to see if there are any best practices, or any advice for starting the system. A lot of people who switched from Basal IQ or other pumps or no automated system, you know, just a regular Tandem x2, and I'll put myself in this camp. We were one of the first people on this in late January of 2020. We started on Control IQ before my endocrinologist or shouldn't say that way. We started on Control IQ before Benny's endo was trained. So I was in touch with him, but he was like, tell me what you find out basically, like, show me Show me Benny settings like we're gonna adjust as much as we can. But what are people saying? What are what are the you know, what are the experts saying? Trust me, my endo doesn't take advice from Facebook. But you know, it was one of those situations where we're learning together. And luckily, he trusts us to do that. But then he had, you know, we put his regular settings in, and we had massive overnight lows. And we had to adjust because of that five hour increment. We had to adjust. Basically everything works like a dream now, but it was a different transition than I had anticipated. I'm curious if you learned anything from that and what your advice might be now?

 

Molly McElwee Malloy   19:56

Yeah, one of the things we noticed, particularly people going from Basal IQ to To Control IQ as in basal IQ, they'd sort of artificially inflated their basal rates to sort of hug that line at 80, right or, because because it can always turn off, right? It's always preventing hypoglycemia, so why not have that basal rate a bit more. And with control IQ, it really takes that information and says, okay, that's where you are at baseline. And if that's really overly aggressive for where you are at baseline, then you're going to have hypoglycemia. So getting optimized settings is super, super important. And we do still see that people going Basal IQ to control IQ, that they've had really aggressive basal rates, and you need to back off of that, or even really aggressive meal. boluses, right. So sometimes getting that reevaluated with your healthcare provider, or diabetes educator, can be really, really helpful. But also coming from other AI D systems where you may not have as much information about, you know, what's going on with your basal rates or anything like that. But really just going when in doubt, wipe it out, you know, go back to basics with your settings, and with your provider and making sure those are dialed in. Because control IQ  is being a metabolic algorithm, it really does behave when we really did design it around sort of insulin titration as we know it. So it's not any, any crazy math, it's not an occult science, it's, you know, it's what your endocrinologist would use now, for titrating insulin and going back to those basics is is really necessary to get a good solid start.

 

Stacey Simms  21:23

So would you recommend maybe basal testing or just talking to your provider about what they think is best for your settings,

 

Molly McElwee Malloy   21:29

talk to your provider about what's best for your settings. I mean, I can't give any medical advice on on how to do that exactly. But there, there are known ways to do this, whether it's you getting your basal rate, or your carb ratio, and a correction factor all dialed in. Do that with your provider. I I personally hate basal testing, I will tell you that I don't like basal testing. The reason I don't like it is because when people are basal testing, they are altering their behavior from normal. And it is not a true test, right? They're trying to avoid hypoglycemia. They're not doing their normal schedule. Because if you get hypo right, you have to treat it's trashed, you have to do it again. And so beta testing is, in my personal opinion, a nightmare, and not a true representation of what the patient is actually needing during that time. So I would I would prefer to do is see how controller hue is changing baseline and then see what that looks like against what's programmed and kind of, you know, look at the difference between the two to get the feedback. So really think basal testing is, you know, in theory, it's a good thing, right? But nobody basal testing is doing exactly what they were doing before that because they're not eating, right, they're trying to be careful about hypoglycemia. Sometimes you're just staying home all day to try to test this out, because you have to do so many finger sticks or what have you. So I don't think it's a really good representation of what's actually going on, I think, you know, looking at your total daily dose of insulin and talking to your healthcare provider, you can get that dialed in much better, with much less frustration. What I did with Benny and

 

Stacey Simms  22:59

I agree with him on the basal testing, we haven't done it in years and years and years for many of those reasons. But what we did that work nicely is we made changes very slowly. And it can be very frustrating. But it really works well. For us. Again, this is not medical advice. This is me personally what we did. And it really helped, we made one change basically, like he went low at 2am. So I changed the basal rate and we waited like three days, then and even if we went low, we treated but we didn't change the basal rate, then we worked on the insulin sensitivity factor, then like it took us two to three weeks before we thought we might have it and then we adjusted again about a month later. And if you if you can be patient, which is so hard to do, you know, people especially especially, and I'll throw myself under the bus too, especially as parents, we get nervous if anything's out of whack, right? We want everything to be perfect. What happened to my straight lines, and it's really hard to dial into settings, unless you're willing to let some of that perfection slide for a few days or weeks. But I'm telling you do it slowly, it'll come out much better in the long run.

 

Molly McElwee Malloy   24:03

Right. And if you think about an experiment, like for instance, the one that often comes up in our household is meant to my husband likes to follow recipes. And I hate following recipes. Although I know it's absolutely necessary, right? Because if you don't get the flour and the sugar and everything else, right, it just tastes like dirt. So they when you're baking, because I have done that. But it's very important to follow those recipes because if you alter you know one thing versus another thing, you're gonna get a totally different result. So altering one thing at a time is very important in a scientific kind of experiment, which sometimes dialing and pump settings is absolutely like that. And you need to follow that recipe. You can't willy nilly. It's not an art, right. It's very much a science. There's no there's no artfulness in this.

 

Stacey Simms  24:51

So looking ahead, and I'm not sure how much you can tell us but I'd love to start by kind of asking you about changes planned to control like you bet He has the first question here. He wants to know when the auto correction, right that auto, I call it the auto bolus, but the auto correction, when that will be stronger, because right now it's 60%. automatically.

 

Molly McElwee Malloy   25:12

Yeah, 60% because we're also titrating. Basal. Right. So the combination usually gets you closer to 100%. We are currently working on what that looks like, and how we could do that safely. I don't know how quickly that comes to fruition. But I can tell you that we are working on trying to understand how you would increase aggressivity without increasing hypoglycemia

 

Stacey Simms  25:37

you need a teenager setting, I can tell you that

 

Molly McElwee Malloy   25:40

we need a teenager aggressivity setting that's, that's for darn sure. Yes, Yes, we do. Well, maybe

 

Molly McElwee Malloy   25:45

I should start

 

Stacey Simms  25:46

by really asking you what what are you looking at in terms of improving or changing control iQ?

 

Molly McElwee Malloy   25:52

So we've we've really listened towards to feed back, right. So one of the things we do at Tandem, which we do really, really well, is we do these surveys all the time, where I'm constantly asking you, and you probably get these, what do you think of this? What do you think of that? What do you want from this, what you want for that, and then we look at the glycemic data, and we do some comparisons, because you can't just take what somebody wants as the absolute that would be best for everybody without looking at glycemic data. So we're kind of looking at both of those things, to see how we could refine Control IQ for something in the future, that works better and something that people don't even more excited about. So we're looking at people's sort of concerns? Or how aggressive can it be? Can it be more aggressive? Could it be less aggressive? gonna, you know, do this or that, but I picked my targets? Could I put a timer on exercise? Could I do all that? We are looking at all of those things? I would say nothing's off the table right now. I don't have any promises as to what comes first. As far as the improvements go, I think, you know, the next thing that we've been working on sort of is that bolusing from your phone, and being able to bolus from the app? Because that's been a big request.

 

Stacey Simms  26:57

Oh, but I'm asking about that. Don't worry.

 

Molly McElwee Malloy   27:00

Okay, yeah, because the thing, the cool thing about working as you know, we're a software, pump company, right, software based insulin pump company, which is cool, because you can make changes to software a lot easier than you can make changes to hardware. And so since we're not reliant upon the hardware to change, to make major changes, we could kind of do this in an iterative fashion, you know, one thing and then another thing, and then you know, and build and build and build a better product as we go along. And like you said, before, doing it slowly, carefully, looking to making sure that the changes are appropriate and working for everybody. So we're gonna follow that sort of scientific process, but we're looking at a bunch of different things that we might be able to change or, or make better based on feedback that we've gotten from our users.

 

Stacey Simms  27:49

One of the things that the other pump companies are coming out with, or if they come out in 2021, is a lower and different range, target range, or target number, you know, Omni pod and Medtronic have said that it'll be lower than, you know, 115, or 110. It'll be down to 100. It might even be adjustable. Can you speak to what Tandem is looking on that?

 

Molly McElwee Malloy   28:12

I think we're looking at a lot of different things I do. And full disclosure, as everybody knows, I come out of the University of Virginia research school center for diabetes technology, and working with Dr. Boris kabocha, and working with Dr. Mark proton, and Sue brown and Stacy Anderson, and really getting familiar with what is safe, and where people can kind of push the limit and where you can't, I think that 112 point five that we've chosen as being a really safe glucose has been really safe for the majority of the population. And since we're designing for the majority of the population, it's been very successful. So I know there are people who want to choose differently and want tighter targets. Now, when you choose tighter targets, whether it's 100, you know, some people will want 80, things like that, you're going to have to trade off some hyperglycemia. And as a product that gets approved for vast majority of patients, when you increase hypoglycemia, you are inviting adverse events, right? You're inviting possible adverse outcomes. And so you have to be very, very careful and almost ginger with that, and what that's going to mean for your patients and for the whole population. So I approach that cautiously. And I think at Tandem, we're approaching that cautiously as to how do you do that without increasing hyperglycemia? I think other people choosing those targets, you're gonna see the trade off with increased hyperglycemia. At least that's what we've seen so far. And in clinical trials,

 

Stacey Simms  29:56

it's interesting because people listen to this podcast generally. We are found through the research that I've done, you know, are extremely well educated, you know, very much take control of their diabetes in terms of even willing to do DIY stuff, right? It's a different population.

So as you're listening and you're thinking, well, I want to ride at You know, all day long Give me that flexibility. and wondering, you know, how do we balance that, as you're saying, with the 99% of people with diabetes, type one and type two, who may use this pump, who don't have access to the education or the time to look into it, or you know, many, many, many factors that increased that chance of hypoglycemia, as you said, but the other hand, it's a selling point. And other pump companies are already saying, we were going to be better, right? Or we're going to be more flexible. And I don't know if that's even a question for you, Molly in the position you're in. But it is something that I guess you really have to take into consideration.

 

Molly McElwee Malloy   30:38

You do. And I can speak more philosophically about this than I can. Anything else. But you know, particularly as a diabetes educator, and as someone with diabetes, hugging that line at 80, or 82, or whatever someone wants to do, you do have increased hypoglycemia. So the most relevant experience I have to pull from is pregnancy, right? during pregnancy, we asked people to stay, you know, very controlled, which you know, is a little bit like magical thinking, because it's very, very difficult. When you get all these hormones raging and everything going on and you're sick this minute, you're hungry, the next and all this stuff is going on, I spent a miserable amount of time and hypoglycemia, this was before any automated insulin system, right? So my daughter just turned four, so we can do the math. And she's my youngest. So I know nothing was on the market at that time, that would have helped me. But that was preventing that, but in letting me ride that really close line, have you know, let's hang out at 72 all day, at personally thought that was a miserable experience, whether it's the neural glycopyrronium, right, so your the lack of glucose to the brain where you're like, I can't remember what's going on or what I need to think about next, or you're constantly tweeting hyperglycemia. Like, it's not a trade off, I would take lightly. It's a risky trade off.

And I would say for for people who are comfortable being in that space, that's fine. And that's a very small amount of people, right. And if you can hug 82 all day, with, you know, whether it's doing some sort of low carb diet and intense exercise or what what have you, that's awesome, you're also not the majority of the population, right? So while I can appreciate that people want that, and they want to be able to set a much lower target, you know, people with euglycemia, right, without diabetes, don't have that either. People with without diabetes do have, you know, 30 40 point range, sometimes with meals and things like that happening. So it's not, it's perfection that I don't know, is a realistic ask for someone with diabetes. Now, people who can do this and do this all the time, I guarantee you, they're spending a tremendous amount of time and thought on it. Again, if you want to do that, and you can do that. And that works for your sanity, then please, by all means, but for a lot of people, you know, like, we have other things that we are going to be focusing on, and it's not going to be diabetes 24. Seven, and the goal of an automated system is to relieve some of that burden. So, you know, it kind of depends on like, Are you okay, with the trade off being low? Are you okay, with more management with being more involved? A lot of that's just going to be decisions, personal decisions someone's going to have to make, but I wouldn't say that the lower target is necessarily advantageous for a large population.

 

Stacey Simms  33:24

Okay, as you listen, I know, you were screaming at me to go back to bolus by phone. Don't worry. I didn't let it slip by. Let's talk about that. Because the app came out spring-ish of last year for general users. And it's great to look at people love the information. Talk to me about if you can tell us a timeline or any information about bolus by phone?

 

Molly McElwee Malloy   33:46

Yeah, so one of the cool things about my job is that I get to work with the Human Factors department and we have really good human factors department at Tandem. And we

 

Stacey Simms  33:56

stop you there human factors, because that always confused me. That means how people actually interact like how stuff feels and looks and how you actually use it,

 

Molly McElwee Malloy   34:03

and how you understand it. And how logical is something to you? How intuitive is something to you, you know, something as simple as changing where and the menu structure you would put something we test to see if trained, can people find this? Is this intuitive? Does this make sense to you? If we use a new term, right, we test it to make sure that it's understandable the thing might, you know, this is a very much outside of the realm of insulin pump therapy. My favorite illustration of human factors is if you you know any hotel you've ever visited, you pick up the hairdryer that says do not use in the shower, right? Like someone did that there was someone I'm sorry, yes, somebody did that. Right. There's, you know, crazy warnings if you'd like pick up a pillow, it's like you know, do not use while smoking or do not, you know, things like that, but it did happen. So that warning has to occur. So if we change something with insulin pump therapy, or we Add a feature like bolusing. From iPhone, we have to test it very thoroughly to make sure it's safe, effective, understandable and intuitive, because not everybody is going to read the instructions. So we have just completed the mobile bolus testing. And we've done extensive work, testing it in a number of different scenarios, people with type one, type two pediatrics, where they are in charge pediatrics, where the parents in charge, you know, there's a wide range of people who are using the system. And we need to test in all of those different user groups and get feedback. And it went really, really well, which was excellent, which means that it can then get submitted to the FDA. So I suspect that that will be happening somewhat early in 2021, first half of 2021. But I don't have insight or line of sight as to when that is promised. Because the FDA is so so concerned with COVID right now as they rightfully should be, and approving vaccines and things like that. So there's a little bit of a backlog there. And I don't know how that's gonna affect our timeline. But we've been working really hard to get that out. We know people want it, we know people will need it. And it will be a really useful feature. But it's been tested really well.

 

Stacey Simms  36:08

So and again, I'm, I get a little fuzzy sometimes on the details here. What kind of submission is this? I have learned in the last few years that there are different ways of submitting to the FDA some take longer to approve. I mean, we never know how long it'll take to approve Having said that, but there are some things that are like building on previous submissions is bolused, by phone something so new, that they have to look at it in a new way, or is it building on something you've already asked them about?

 

Molly McElwee Malloy   36:32

It's a good question. And I'm not part of the regulatory team that is involved in that strategy. I believe that we are building on our previous submission, since this is an on an ace pump, an alternate controller enabled pump and the and the the way that the pump is built. And the way that that is structured for regulatory purposes, is that you build upon last submissions, but I can't speak with authority on that at this time.

 

Stacey Simms  37:12

The other thing that we are very interested in as a household and a community is that what has been called the T-sport, can you talk about where that is in the process, and that's the tiny tube pump, I guess I would call it, I'll link a picture, if you're not familiar with it, we will link up some more information. But it's not quite a patch pump, there is still a little tube on it. But it's much smaller than the x two and it's made to be worn kind of flush or flatter to the body.

 

Molly McElwee Malloy   37:28

Right. And the idea behind this is that you could have a variable to be linked right very, very short tube on your body to longer where you just put it in your pocket. So depending upon the patient needs, the reason that it is still has an infusion set is that we know right from feedback that if you have an occlusion with a patch pump, you take that patch pump off and you lose that insulin right, and you lose that whole thing. If you can replace a site, and not all of the insulin that's in you know in contained to their end, then that is an easier fix for somebody, it's also less expensive. So that's something that we've been very keen to keep. And addition, the the idea that you might need a different angle set. So not everybody can use the same sets as successfully as others. This will allow us for some variety there as well. And so we're pleased about that.

 

Stacey Simms  38:22

And I can just jump in and kind of translate because I know you're you have to be careful about what you can say. But as you're listening, if you're wondering what she's talking about Omnipod goes in one way, there's not an angled set, there's not a steel set, there's not a different set, there are a few more options if you're using a tube pump, if the inset on the pod pump doesn't work for you. And so there's also as you mentioned, the insulin that's in the tubing, you can do I don't know if this is Tandem approved, so maybe don't listen, Molly, but you can do separate site and tubing cartridge changes when you use a tube pump, which is what we have done for years. So when he said of insulin, the pump, we change the cartridge, when it's time to change the inset, we change the inset we don't do those together. So, you know, advantages and disadvantages for each pump. I know Omnipod people love the things that are great about their pump, but those are the differences that you're talking about. Just in case you can't get into the nitty gritty.

 

Molly McElwee Malloy   39:11

Right, absolutely. And you know, we're big fans of choice at Tandem. So if something works for you, great, excellent. And so one of the reasons that we're so big on choices, because not everything works for every person. So this book allows somebody some choice within that. That option.

 

Stacey Simms  39:27

So where are you in the in the test? I know you can, you can barely give us full details. But where are we in terms of T-sport? Is it? Is it in testing? Is it is it coming out soon?

 

Molly McElwee Malloy   39:37

I can't speak to the exact timeline. And part of that is because the FDA is bogged in and down in COVID right now, but we are working on it. I know we're working from a human factor perspective, we're working on what the difference is going to mean for the patient and training for something like this or from the healthcare provider and training and something like this. And that's the aspect that I'm involved in, is you know, how do you train on something that's a little But different like this, and how do you change the training to adapt to that, but everything is in development. The thing about Control IQ and and even basal IQ is right there already tested. So those can be implemented in a new form factor without any problems. So that's something that we don't have to worry about. So it's more of just form and function and things like that.

 

Stacey Simms  40:19

Here's a dumb question for you. I have heard that T-sport is the name that you all are kind of using internally, and it may not have that name when it's released. Any update on the name? Is there an update on the name? Oh,

 

Molly McElwee Malloy   40:31

I am not the person that would be able to tell you that. Oh, okay. But I appreciate the question.

 

Stacey Simms  40:38

I think you should have a contest and you could name it, you know, pumpy mc pump face or something. But yeah,

 

Molly McElwee Malloy   40:43

exactly. Yeah. Yeah,

 

Molly McElwee Malloy   40:45

we're shorting

 

Stacey Simms  40:46

Yeah, surely that's perfect. I was laughing when we talked about that this summer, because it's interesting. And it's such a wonderfully privileged place that I'm in I feel like we're we find out this information. So early in the process, that the branding isn't really even set. So it's when I heard that I thought, Wow, what a cool place to be in some very interesting stuff. Right. I have a few questions from listeners for you. I know you have some more information. We're getting kind of long here. But let me ask you, here's a quick Control IQ question. And this is more advice. I don't know if you can answer this. So this person says, sometimes I like to set a higher basal in advance of when I work out because adrenaline makes my blood sugar spike, can you change that. So we can manually adjust basal rates without having to turn off control IQ, I know my body better than the software having to manually adjust with boluses after and having to guess, since I can't do them based on blood sugar due to iob issues is tricky. And I will jump in and say Molly, Benny, and I do this too, we do some guessing with the manual boluses. So I'd love to hear what you think about this.

 

Molly McElwee Malloy   41:49

Sure. So there's a couple different directions we can go as one is you can turn Control IQ off and on and do temp basal rates. And there's no penalty, right for doing that. There's no learning time or restart up or, or anything like that, that impacts Control IQ if you turn it off and on for those periods of time. So that is absolutely an option. It's just it's super easy to do. Another thing that we've seen people do successfully is set up a secondary profile that is a bit more conservative or a bit more aggressive, depending upon the patient needs. And then switching into that profile for that period of time. And leaving Control IQ on so there's a lot of different ways you could do this, you could even do a secondary profile, and then put it into exercise, right? Like you could do conservative plus that temp basal, right, or you could do aggressive plus that 10 basal rate. So all of that is it's entirely possible. But knowing that you can turn it off and do the basal rate as you please and then resume it confidently, you know, that's still an option for you. I do know that people do want a bit more control over that. And so and, you know, allowing for some sort of ability to have a temporary basal rate is on the list of things that we would like to do. Great.

 

Stacey Simms  43:03

Another question was I am still using basal IQ. And this person is really curious about what percent of Tandem users are using control IQ. And and you've kind of touched on this. But do you have any statistics about user satisfaction rates for control? iQ?

 

Molly McElwee Malloy   43:18

Yeah, so D q&a, again, affiliated with diatribe, third parties who, you know, has done some user satisfaction surveys, and I will get you the exact number. But this user satisfaction with Control IQ is very high, very, very high. And I would say the majority of people have changed over to control like you. But there are still patients on base like you and I can't speak to the exact percentage, but there are reasons why somebody may want to choose based like you to just have that suspension rather than also, uh, you know, having the, the auto correction or something like that. So there's cases for both, and that's why they're both still being offered. But I can't speak to the exact number of people who have not switched over, but most people are switching over to control like you.

 

Stacey Simms  44:02

Are there any plans to make it more flexible in terms of switching back and forth? Because once you go from basal IQ we did this once you put the software in your pump and switch to Control IQ you can't go back to basal IQ. Are there any plans to change that?

 

Molly McElwee Malloy   44:16

Not at this time. The reason being is that you wouldn't need a script, write a prescription to do that. And when you upload your property went to your provider. If you went between one thing and another and another all the time, we would really have to differentiate those reports and make sure that the healthcare provider was familiar with why each was different because they would impact how you would titrate insulin so it adds a lot of complexity on the therapy end. And so we have not made a move to to make that something that you could toggle between. Got it.

 

Stacey Simms  44:51

And another question came in which I thought was really interesting about accessibility for people who are blind and I know in the past, there was a meter that I think talked about There was more audio is Tandem looking at more accessibility for people who don't have any vision or low vision.

 

Molly McElwee Malloy   45:07

Yeah, yeah. So Tandem is making technology user friendly for those with different abilities. And we're absolutely have this on our radar, persons with low vision or no vision, right, using a touchscreen could be difficult. And we're exploring ways to leverage apps and existing consumer technology that might be able to solve those unmet needs. It's definitely definitely something that we are looking at and can appreciate that that's something that we need to do.

 

Stacey Simms  45:32

Very cool. Another question came in, and this is based on an older press release. So I'm not sure if you can speak to it. But apparently JDRF in Tandem years ago, like eight years ago, put out a news release about a dual hormone, insulin pump. What we're seeing if you're familiar with the iLet beta bionics is because the only one at least in the US where they're trying to develop a pump with insulin and glucagon with more stable glucagon now on the market, any chance that Tandem is working on a dual chambered pump.

 

Molly McElwee Malloy   46:02

So the big message here is that that eight years ago, I think, for the press releases when Tandem was being used with two separate pumps in the iLet studies, right, right, they ran the Tandem pumps, and one was full of glucagon and one was full of insulin. And they were putting two pumps on one person,

 

Stacey Simms  46:13

I remember that picture. Wow.

 

Molly McElwee Malloy   46:21

So that's where that came from. So but our our micro delivery technology is really well suited for to hormone therapy, we currently are only approved for you 100, right? insulin and only indicated for insulin per FDA. But you know, it's a fundamental challenge for people developing dual chamber devices. And there's not an approved hormone available for use in pumps at this time. So it all be very investigational. But we do have, you know, this microdelivery technology, which is well suited for doing something like dual hormone, but I think there's a lot of things that need to get addressed before even that becomes something that we can put in a trial.

 

Stacey Simms  47:02

And then it's something that I started talking about this summer, I've mentioned this interview with I did with Steph Habif from Tandem. And I will link that up. It was kind of we call it the first look under the hood for Control IQ that we did this summer. And she's the Senior Director of Behavioral Sciences. But we brought up some of the questions about who gets into clinical trials and who actually tests these things out and the information that you get in terms of diversity. And so this question here, I'll read the whole question from a listener. I've heard some rumblings that most of the people who tested Control IQ were white, I would love to know that Tandem has plans to diversify this more. This is a huge issue in general for trials of any kind, and stuff this summer started to address that in terms of Tandem knows it. They're trying to be more diverse. Can you follow up on that? And let us know what's going on?

 

Molly McElwee Malloy   47:50

Yeah, and your listener question is totally right on, right. The FDA is on this as well. They recently told Moderna, you know, you have to go back with your COVID vaccine and get get more people, right, you have to get people of diverse backgrounds and and ethnicity. And so that's true in clinical trials overall, need to be all more inclusive. And it's true that most automated insulin delivery trials today have been largely white, and that includes our adult pivotal trial. One of the things we're seeing changing from both an FDA perspective, as well as research and industry is that there's active pivoting to change the approach. And there's more guidance on changing the approach. The FDA has issued guidance on diversity and inclusion in clinical trials, which I'm sure you could post in the show notes. But that's a really interesting sort of, if you will mandate from the FDA to please be more inclusive, but for those in the community who may have attended that D data event from diabetes mine, and I can send you a link to the YouTube video, Dr. brandmark, who's at Children's Hospital in Washington, DC presented on diversity inclusion, specifically in diabetes technology research, and it was very illuminating on how white those trials are right? And what we need to do to better accommodate and to be more inclusive in a lot of different communities.

From a Tandem perspective, we are very committed to this, particularly in our post market studies, we encourage principal investigators to do the same who are looking at different research and the FDA is mandating it so it absolutely will be happening right? The FDA says you will be providing a trial with this type of diversity you will be doing that so I think that the that everybody is aware that this needs to happen and we're trying to figure out how best to do it and be responsible stewards and industry but for a long time you're right I mean, you know diabetes technology and automated insulin delivery trials were largely white, you know, you have to be able to take off of work right? Whether you're bringing your kids to your appointment or not. And so those are jobs with that allow some flexibility. You have to be able to afford to miss work right? You have to have paid some sort Lead, whether it's sick or personal days and, and all of that does impact the person that you recruit. Right. So being able to alleviate some of that maybe it's provide compensation, the FDA suggested providing compensation for parents that can't take off time from work or, you know, meeting people where they're out whether it's in qualified public health centers, or at schools or wherever, to make it easier for them to attend, whether it's clinical appointments or whatnot, but meet people where they're at and have people run the research that look like the people who will be in the research, right? So diversified that field as well. There's a lot that needs to be done here. And Tandem is absolutely committed to making this a priority.

 

Stacey Simms  50:42

That's great to hear. I'm interested in following up more about it not just with Tandem, you know, I feel like it's also a question of finding people who, you know, I have the same frustration with this podcast, how do I reach new communities? How do I find people who would maybe benefit from the information but don't know why I exist? Because I don't run in those circles, right? I mean, we tend to run in the same circles, and we need to branch out and not make people find us. But But fight. Right. So it's really, I think it's also a question of finding more. Look, I'm not an expert on this by any means. I probably shouldn't speculate. But it's also a question of, you know, finding staff that is of different races, me finding more guests that are of different races and are, are in different communities. It's for us to do the work, not to ask them to come to us. And so I'm really glad that Tandem is doing that and is on top of that. So thanks for answering that.

 

Molly McElwee Malloy   51:37

Yeah, there's a sea change coming in society and diversity and inclusion, and that will absolutely be translated at Tandem.

 

Stacey Simms  51:45

we've been talking for a long time, you've been really generous with your time. Just another quick question from a listener. And that is about the mobile app. I'll be honest with you, Benny doesn't use it a lot. He says he's waiting for bolus by phone. But someone said it wasn't that fast. In terms of uploading. Have you heard about that? Is that something that you're looking at?

 

Molly McElwee Malloy   52:03

Yeah, absolutely. And the reason that I think some people are experiencing that is that they haven't downloaded, they're pumping some time in, right. So whenever it last downloaded, it's going to append that data going forward. And so if you have a year's worth of data, or you have six months worth of data, that's not gotten to the cloud, that takes a while to get up there. So if you could download your pump First, if you've not downloaded in a long time to connect, or upload your pump, rather than that sort of relieves that burden to append the all the data that has never been there before. So if you could do that, and then let it sync, day after day, it will be much faster. It'll be much, much faster,

 

Stacey Simms  52:45

And we did that I should probably get on that. But it's Yes. Good. Hey, really, before I let you go, Molly, we haven't spent a lot of time on this interview, because you've been generous in the past to come on the show for really many years now. But I haven't spent time talking to you about your personal experiences. But as you mentioned, you know, you've been in this community not just living with diabetes, but you've been in the testing for the artificial pancreas projects for for what has become Control IQ for a very long time. Would you mind if I asked you just one more time? What is this like for you? We've had this elusive piece of software in the market with real people using it for a year. You've been testing it for I want to say almost 10 years. What's it like for you?

 

Molly McElwee Malloy   53:30

Yeah, yeah, it's professionally, 10 years, and personally, for 14. So it's a bit of a surreal experience. But it's also it's very cool, because I can see the improvements that need to be made. And I can see how they can be made. And it's been really, really cool to teach health care providers, and particularly, which is a big part of my job about reading the data and looking at insulin needs. And how do you make this look like you are how do you make this work with bass like you are? How do you make this work? easiest for your practice. And it's just been just to put it into practice has been really awesome. Because it's, we do get notes from users on social media and otherwise about how it's impacted their life and that they feel like a normal person now and that's all I've ever wanted, right as a person with diabetes is to like, give me back my personhood, where I'm not thinking about diabetes 24 seven, and I feel like Control IQ does that. You know, it's not Is it the be all end all? No, we will improve upon that. But you're never done right. But the fact that so many people have expressed that has been really rewarding. And I really want to see that carry forward and in all of our products that we relieve reduce burden for people with chronic disease. There's no other disease in the world where we asked somebody to do all the things we asked in diabetes. You know, if you have a heart condition, we don't ask you to beat your own heart. You know, we don't there's nothing else that we ask this much of people and then that we possibly make them feel bad or shame them for not achieving these things, which is kind of crazy. So reducing that burden and making this a more realistic disease to manage, is all I've ever wanted.

 

Stacey Simms  55:06

Well, I can't thank you enough for your personal participation in testing this out for years and years, as you said, 14 years and for being so accessible and coming on to answer all of these questions. So Molly, thanks so much. I look forward to talking to you more. I look forward to more improvements and exciting releases from Tandem. I know you'll keep us posted. I really appreciate your time.

 

Molly McElwee Malloy   55:26

Absolutely. Anytime. Thank you.

 

Announcer  55:34

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  55:39

Lots more information in the show notes. I'll link up some helpful things from Tandem and more information for you. And I did have a couple of follow ups. As you heard, Molly couldn't answer every question I had. So I got a couple of notes for Tandem that I want to share with you. Now, bolus by phone was submitted in the third quarter of last year. That is called mobile bolus. I don't know if there's a branded name for it. I did ask about that. But I hadn't heard back. But that has been submitted. It's in front of the FDA right now they're hoping to hear back in the first half of 2021. You know, it's hard as Molly did save with COVID, delaying everything, it's gonna be really hard to tell, as always, when the FDA will approve these things. But I'm so excited about that.

And I'm interested to see what it looks like practically, I'm going to say this with no knowledge of what was submitted, I do not have an inside track on what it would actually look like. So this is my speculation. You know, I imagine you just take out your phone and use it like your pump. Right? You can you'll have the full functionality. I don't know if that's really the case, I would imagine the FDA might be cautious. I don't know. But man, I just envisioned Benny, you know, he's got his phone in his hand half the day anyway. So beep beep, you know, let's go. Maybe that'll be their branding: beep beep Let's go.

They also let me know that Tandem is still planning to submit the Tsport to the FDA in the first half of 2021. And they are hoping for a quick turnaround possibly launching by the end of this year, which would be really exciting and nice to have another option there.

And a listener asked me about this. I didn't get it in time for this interview. But I did have a chance to ask Tandem about their agreement with Abbott, if you'll recall, Tandem and Abbott have an agreement to integrate with the Libre not just with the Dexcom. So there is apparently no update on that right now. But they are anticipating having one in the fourth quarter of 2021. We talk a lot about interoperability on this show. And you know, of course the dream is if a certain CGM isn't working for you, and another works better, you'll be able to slap that on and press a button on the pump. I don't think it's going to be that easy. But maybe down the road, I really do hope that we'll have more options. But if you had asked me five years ago, if the pump market would look like it's about to look right now, I think I would be pretty happy about that not just because of the great technology that's here from Tandem.

And we've been talking about what's next for Medtronic and Omni pod. But because we have more pump players coming to market, I am so excited to be talking to the folks from beta bionics and from Big Foot later on this year. So we will keep you posted. Innovations coming up next. Speaking of moving forward, we're going to be talking about exercise and CGM new guidelines for that and rare diabetes Could this be you it's really interesting what they're saying here.

But first, Diabetes Connections is brought to you by Dexcom. And we have been using the Dexcom G6 since it came out and we love it. It is amazing. The G6 is now FDA provided for no finger sticks for calibration and diabetes treatment decisions. We've been using the Dexcom for seven years now and it just keeps getting better. The G6 has longer sensor where that 10 day were now the sensor applicator is so much easier to use than it was in the past. We do love those alerts and alarms and that we can set them how we want if your glucose alerts and readings from the G6 do not match symptoms or expectations use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

Ran Across something I thought was really interesting for our innovations segment this week, and that is the RADIANT study. I will link this up. But radiant is recruiting people who have been diagnosed with diabetes, but they don't fit the usual characteristics of type one or type two. Apparently, this is not uncommon. I mean, most people really fit into the type one diabetes or type two diabetes. You've heard of Lada and 1.5 if you've listened to this show, but many types of diabetes are unknown, called a typical diabetes, and I really have never heard anything about this. So there's a new study called radiant, which stands for rare and a typical diabetes network and they want to discover more about what's going on here. You know, how do we better help these people? How do we treat this stuff, there's a lot more information on who qualifies are, how do you know i will link that up in the show notes, please check it out. And let's spread the word. Because this is really something that I think could make a big difference for people who are, you know, misdiagnosed or aren't getting the most from their treatment like, oh, it sounds like you have type two, but this isn't working for you. Let's get the word out and check out that link.

The other story in innovations is about new guidance for people with type one, and using continuous glucose monitoring for exercise. So there hasn't been a lot of information about this, you know how to use your CGM to safely and really exercise well. So this is new guidance from the European Association for the Study of diabetes and the International Society for pediatric and adolescent diabetes, basically, the European counterpart to the American Diabetes Association, and that second group has a narrower focus on younger people as you would assume from the name. But there are a lot of American researchers that you've heard of as the co authors on this, like JDRF CEO, Dr. Aaron Kowalski and Dr. Bruce Buckingham, who we just adore on this show. So anyway, there's a lot of information on this, I'm not going to go through what it says because I will link it up in the show notes and on the episode homepage. But it really gives you guidance in terms of if this than that, but also allowing for the complexity, because everybody with diabetes is just a little bit different, especially your exercise is going to be different to what it really like is it's not just about the exercise in the moment, they also talk about what to do later in the day and overnight. So good guidance here. Our innovations segment is for tips, tricks, hacks, studies, new stuff in the community. I also have our Tell me something good, which will return next week, please make sure you send me your good news stories for that I have a bunch that I've been holding on to can't wait to share next week. But I always like to hear from you. You can reach me Stacey at Diabetes connections.com, or drop into the Facebook group Diabetes Connections, the group and let me know what's going on.

Before I let you go quick reminder that the Fearless Diabetic summit is happening at the end of this month. This is a virtual summit that is free, you got a bunch of speakers, the videos are made, I was so excited to participate in this. And you can watch them for free for a couple of days, as many as you want. And then after that there is a fee to access. But you can check it out. I'll put a link in the show notes. But I think this is a great idea you can get kind of the appetizer and see what you like about it. And then if you want to delve further, you can go ahead and you know and pay for the content. I was not paid for my involvement, I was excited to take part I do have some goodies and freebies and stuff like that for people who are participating. So you can check that out. Also, mine I think is the only parent video that's in there. But there's lots of great information from athletes and endos and CDEs, you know, regardless of age.

Also, if you have a podcast or you're thinking of launching a podcast, diabetes, or otherwise watch my social posts, because by the time this episode airs, my new venture should be out there I am taking the dive to help other podcasters learn how to talk to sponsors, how to make money, frankly, from their shows, and how to do it ethically. And well, there's a lot of snake oil out there hanging, it's a lot like diabetes, there's a lot of not so great players out there in the podcasting space. And I'm excited to kind of help give people good advice that can help them get great shows out there and make them solid and make them more than a hobby. So watch for that. All right, lots to come. We're getting a great response for this tech heavy emphasis in 2021. Because my goodness, there's a lot out there. But we have much more than that. I'll be talking to some people with some great stories as well. And as usual, if you've got one or you've have something or a topic you'd like to hear, please reach out. I'm here for you. This podcast is to help, you know share our stories and get great information out there in this community. And if I'm not serving you, then I am not doing my job.

thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. Say a prayer for me as Benny is now behind you. Oh, my gosh, I did not know how nervous I would be about this day. I think I'm doing all right. We'll see. All right. I'll see you back here next week. Until then, be kind to yourself.

 

Benny   1:04:15

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

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