#669 David Panzirer - Helmsley Charitable Trust
David is a Trustee of The Leona M. and Harry B. Helmsley Charitable Trust. As a parent of two children with type 1 diabetes, his personal interest in this disease has led to the creation of a robust and highly developed program built on funding unmet needs. The Helmsley Type 1 Diabetes Program works closely with partners in private philanthropy, industry, academia, and government. David serves as a leader in fostering collaborations between funders and projects.
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Scott Benner 0:00
Hello friends, and welcome to episode 669 of the Juicebox Podcast.
On today's show we're gonna be speaking with David pan zero. David is the parent of three children, two of whom have type one diabetes. He is also a trustee of the Leona M and Harry B Helmsley Charitable Trust. The trust does a lot for type one diabetes that you don't know about. And that's why I asked David to come on the show. It's a very interesting story, and a really great conversation that I think you're going to enjoy. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. Are you a US citizen who has type one diabetes, or is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. Join the registry fill out the survey takes fewer than 10 minutes, you're going to help people with type one diabetes. There's actually an example of how that is in this episode. T one D exchange.org forward slash juicebox.
This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter. Learn more about my favorite blood glucose meter at contour next one.com forward slash Juicebox Podcast is also sponsored by us med get your free benefits check at us med.com forward slash juice box or by calling 888-721-1514 Would you like for your diabetes supplies to arrive the way they're supposed to? Without all that hassle? Check out us met.
David Panzirer 2:08
My name is David pan's you're going more details. You want to just ask away.
Scott Benner 2:14
Let's just keep going. David, let's start with this. You have a child or children with type one diabetes. Is that right?
David Panzirer 2:21
Yeah, I have three children. Two of my three children have type one diabetes. So my oldest daughter Morgan was diagnosed in 2007. She was six years old. She's now 21 Doing the math real fast. I have an 18 year old daughter Caroline, who was diagnosed four years ago. She's senior in high school getting ready to go play D one lacrosse up at Colgate next year. And knock wood I have a son who is 15 who does not have diabetes.
Scott Benner 2:48
Okay. Yes. Well knock on a lot of wood for you. So Carolyn was the second is that right? Caroline? Okay, and she's 18 now.
David Panzirer 2:58
She has she's senior in high school.
Scott Benner 3:00
diagnosed when she was 14. Yep. Okay, eighth grade. And you have do you have any autoimmune issues at all?
David Panzirer 3:08
Well, autoimmune issues. Yes. I mean, it's in my alopecia is in my family. There's a few other issues. But no, no t Wendy history at all. Okay, as far back as we can go,
Scott Benner 3:20
celiac thyroid?
David Panzirer 3:22
No, nothing like I mean, Morgan has thyroid issues as well. Okay. But she's T Wendy.
Scott Benner 3:28
Do you mind as is our her thyroid issues? Autoimmune. Does she have Hashimotos? Or is it no she
David Panzirer 3:35
hypothyroidism related to diabetes?
Scott Benner 3:39
Alright, so we'll start. How about your wife side of the family? Or their mother? I'm sorry.
David Panzirer 3:44
Yeah, zero diabetes, and I am married.
Scott Benner 3:47
Okay. It's always like, I never know. You never know. Yeah. Okay, three kids, and your youngest son doesn't seem to have any issues at the moment. Okay,
David Panzirer 3:57
so he's got issues just not.
Scott Benner 4:01
Well, that that I believe. So when Morgan's diagnosed? Tell me a little bit about it. How did it present and how did you guys figure it out?
David Panzirer 4:11
Yeah, so my wife Karen is a registered dietician that has her master's in nutrition. She's also a personal trainer. So she noticed that Morgan was drinking and peeing frequently and basically said to the doctor, you know, she dropped off a urine sample she said appease me and just test this. So she dropped off a urine sample. We got a phone call the next day, and I'll never forget it because I got a conference into that call. And the doctor said I'm really sorry to tell you this but your daughter has type one diabetes and plan to spend tomorrow down at the Columbia diabetes Center. I plan to spend the day there. And I can honestly tell you I knew absolutely zero about type one other than the stereotypes that sugar or something to do with sugar brightening up Right. So we went and spent the next day which was a Friday down at Columbia and learned how to prick fingers and drop insulin and do shots. And I guess the double edged sword of not being in DKA is we were sent home that night. And, you know, we knew nothing. We knew nothing other than, you know what the doctor told us. So we were sent home and the doctor was like, test these four times prick her finger these four times and here's the ratios and blah, blah, blah. And, you know, there we were sent home on a Friday night and it was terrified.
Scott Benner 5:36
15 years ago, you just had a they gave you what a meter and some syringes?
David Panzirer 5:41
Correct. No CGM. There was zero CGM at that point.
Scott Benner 5:45
And what she honeymooning at that point, or was she in like, hard need of insulin? Did Yeah,
David Panzirer 5:51
she she had an insulin requirement. But she definitely went on a honeymoon once we started giving her insulin. Okay, I always say the honeymoon is God's way of letting the parents freaking get up off the floor so that they can deal with this,
Scott Benner 6:03
it gives you usually a half a second to get your mind around it before. And then. And then there's a moment where if it lasts too long, you start thinking, could you just let's just get to the part where everything stabilizes, and and the needs are consistent. And
David Panzirer 6:17
yeah, that happens in about 21 years old, I'm finding.
Scott Benner 6:22
I think you're talking about a different stabilization. But okay. So was either of you work out of the home? Like, how did you initially start to manage? Because you were six, right? So yeah,
David Panzirer 6:35
so my wife was working out of the home. And thankfully, the school nurse Morgan was in kindergarten, the school nurse had another child in the school with type one diabetes. So we joked about it now. But back then Morgan was safer going to school than staying home with either one of us, because the nurse actually knew what to do. Yeah. You know, I read a lot, we learned a lot real quick, and began to understand how to begin to deal with this disease. And quite frankly, also began to see the ineptitude of our healthcare system, right. And what I mean by that is, you know, I said a little bit before when, when we were sent home, we were set Oh, the doctor said test these four times a day, after I went home and did a little more diligence. When we went back the following week, I was like, Why didn't you tell me that if I tested six or eight or 10 times a day, I'd have more information and be better equipped to deal with this disease. And the doctor looked at me and said, you know, what, we don't like to overwhelm people, parents of newly diagnosed. And I said, buddy, that you got that wrong, that's not your job. Your job is to educate and inform us and let us decide what we can and can't handle, right, but you pre judged us. And you prescribe four times a day, which I think anybody who would tell you is, you cannot get really good control of diabetes, with four snapshots and time per day, it's borderline impossible,
Scott Benner 8:00
I agree completely, I think the information needs to be given to people and then it's up to them to do what they can do with it to, you know, to to direct people based on least common denominator or your your desire not to overwhelm a few people, you steal a lot of information from a lot of people and you and you can never be certain of what people can and can't understand. And this the timing on this is crazy. But I just got this sent to me 15 minutes ago, it's a little drawing that I can't show you. It's a robot that this little boy Drew, he's the robot and on his shoulder, he has a juice box and some things that are trying to talk in his ear. And I'm the juice box in his photo, like in his drawing, and the and he's the things are telling him that he can eat whatever he wants. And I'm telling him as long as he Bolus is for it. And he's a small child who picked this up while his mom was listening to the podcast, like she never really she never played it for him or told him sit and listen to this. And she sent me this lovely note to discuss, you know what the kids picking up just from hearing the podcast off to the side. So I'm a huge firm believer, you give people information, and they have autonomy they can do people people will surprise you. You know, I think if you treat them as if you're expecting them to fail, well, then I mean, obviously they're going to they don't even know the basics at that point. So where did you get that information from 15 years ago, because the internet was not right with diabetes information back then.
David Panzirer 9:34
So one was the internet two was this other family that was in my daughter's school and had a child, their daughter had type one since she was 18 months old. So they were both six years old. And this family obviously knew a lot more about diabetes than I did. But what you're describing with the healthcare system, is really, you know, I don't want to bail out the doctor here because I think he's culpable. but it's also a system that prevents the doctor from spending the proper amount of time with me and my family to understand what we can and can't handle. And then they triage us, as you say, to the lowest common denominator, and ultimately that equals mediocre to crappy care.
Scott Benner 10:16
Yeah, no, I so I use the phrase on the podcast a lot. I tell people that they're getting do not die advice instead of live healthy advice. And more, more ironically, again, because I did not know how our conversation was gonna go. I already recorded this morning, with a mother of a 17 year old girl, everybody's 17 Right now apparently, the mother of a 17 year old girl who was on the show like a year and a half ago, she was on with two of her friends they met at school, they all have type one. They weren't similarly age, but they weren't too far off. If I'm remembering back when I recorded they're like 16, and 15, and 13. These girls that all met each other because they had type one. And they listen to this podcast. And so the mom comes on later, you know, to kind of fill in the other side of the story. And I was recording with her today her daughter was diagnosed in Ecuador, they put her on sliding scale, told her that this is it. Let her live for five years, this little girl with a NINE and a one C and the nines. And you know how the mom gets out of it. Eventually, she finds another family from this family from America who taught her different ideas. She was incredibly excited because this was her Common Sense was telling her all along, this was wrong, but she couldn't break free. And then when she finally even went online to find out and went back to the doctor, the doctor told her that's how they do it in America. This is how we do it in Ecuador, which obviously is, you know, it's Bolus backwards, right. And so she finally gets good information from another person, she's on her way that kids walking around with a five, five to a six a one C now, here's later,
David Panzirer 11:49
right, but the irony is how many kids have the ability of having an adult that can advocate for them, and then have the wherewithal to go and pick up and move get to, you know, get to somewhere where there's care, right? And then you think about places like Sub Saharan Africa, and we do a lot of work there. Those people are screwed before they ever get out of bed,
Scott Benner 12:07
right? No, no, it's terrible. And you don't have to go as far as as another country to find it either. Because I talked to plenty of people who are they get you know, some people try to attribute it to the age they're diagnosed that but I don't think that's it, I think that you need a somebody that's willing to stay in the fight with you for a long time until you can you can fight that fight on your own. And I think one of the one of the things that I really believe is that a child would would benefit from someone being helpful with their health well into their early to mid 20s. You know, like, just someone who can be a reminder or a sounding board or just you know, just just a friendly a friendly hug or a pat on the back sometimes let you know you're doing okay, I don't get it. I've interviewed too many people who got all through college with with a one C's and fluctuating blood sugars that are clearly not healthy for them. And it isn't until they find a life altering reason to do better for themselves that they actually do because it's so I mean life so repetitive day by day you start into something and wherever you start is sometimes where you stay.
David Panzirer 13:23
Yeah, I mean, look at the data from the tee when you change shows that people hit a realization around 25 or 26, which kind of makes sense with what you're saying, come out of college, begin to think about, Hey, maybe I want to start a family and think about your mortality, and then say, Oh, I better start taking care of myself. It is.
Scott Benner 13:43
Yeah, I'm sorry to cut you off. But I almost always see it connected to the kids, the love for another person, a child spouse, the desire to make a family, something like that usually makes people think, Oh, I have to I have to do better for myself. Which is an incredibly human thing to not want to do well for yourself. But to want to do well for yourself for someone else's, is fairly common. It's just not usually this emergent, you know, because
David Panzirer 14:09
what's got the other problem is you have to have access to the information, right? So you'll live unfortunately, even in our country, as you know, I'm sure geography absolutely dictates your outcome. And if you look at even things like CGM, well over 90% of prescriptions for CGM come out of the diabetes specialty clinics, which means if you live in rural America, where there's no diabetes specialty clinic, you're not getting it right. And I think you and I can both agree and anybody with half a brain dealing with type one would tell you that the most important tool to manage your diabetes is CGM period, full stop. Yeah. And yet, the large majority of people living with type one are adults who don't see an endocrinologist and live in middle America. And they're not getting access to these tools. Yeah. And you know, that's extremely problematic. And to me, that CGM is what really gives you the If you're educated properly, and then you're engaged, the CGM can empower you to go do the next step and take care of yourself. But I think you need to do all three.
Scott Benner 15:09
Yeah. So the podcast is, it's worldwide, it's listened to everywhere. And what I've what I've noticed is that I used to hear people say that you don't share your successes because they make other people feel badly. But I don't believe in that. I think that you can lead by example. You can give people different perspectives, create hope for them, and give them something to reach for. I've seen people get CGM that didn't know they existed. I've seen people adjust their finances to get them change jobs to get better insurance, and then come back to me six months, a year later, to show me how much better everything is going. Again, it's just, I mean, access. Obviously, there are some people who are they can change anything they want about their life, they're not going to come up with the money to buy a medical device like this. But it needs to be available to everybody, they need to have at least the hope that they can figure this thing out. And it's not difficult. I hate to say it that way. But I mean, I've set up a thing here where pretty much anybody can listen to it and come out on the other side with an A one C, at least in the sixes. And if you really understand the podcast, you get into the fives and I'm talking about no diet restrictions, just understanding how to use insulin. Yep, you know, it just it's unconscionable that, that we have people who don't have access to any of the things that they need for health. Alright, well, we were completely agreeing on this. Yesterday, I, I asked you to come on, because I think that I mean, I've been writing. Let's see, I started writing my blog in 2007. My daughter was diagnosed in 2006. The blog was been incredibly successful for a very long time. And then in 2015, I started this Podcast, the podcast, it clips, the blog, and in hardly any time it's it's a better medium for talking about things like this. And all this time, I'm aware of the Helmsley foundation, but I don't believe generally speaking that people who have diabetes know what's going on. So I'm trying to figure out how they get involved. I'm obviously well on the outside but I always see them they're supporting this they're supporting that they're sending money here that kind of thing, always diabetes related but prior to it just beginning to happen if they didn't do that, and one day it hit me like somebody must have started working there somebody's got diabetes, or are you the connection to that
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Are you the connection to that
David Panzirer 21:47
I am so long story short, my grandmother was on Leona Helmsley. So what happened was five months after Morgan was diagnosed in 2007, she passed away and named me is one of five trustees of what's now an $8 billion trust. So I knew absolutely nothing about you know how to get a device or anything into market. I knew nothing about nonprofit. All I knew was I had a little girl with type one diabetes who was you know, now struggling with finger breaks. And she only struggled for a few weeks she she kind of and I can tell you that story. But to answer your question, I am the impetus what happened was we were basically a $2 billion foundation overnight. And if you know anything about private foundations, we have to give away 5% of our money per annum to maintain your nonprofit status. Okay. So between the five trustees, we had a collective experience of philanthropic giving of zero. So here we were trying to get out of the gate, we hired a consultant who was obviously a specialist in nonprofit. And we all kind of picked something that was relevant to us that to get us off the ground. Because contrary to what was in all the newspapers, my grandmother did not set up her money to go to dogs. So obviously, given that my daughter was diagnosed five months earlier, I was like, you know, this is, this is my calling, this is for me. I had no idea how to do it. But I quit my career in 2008. And started doing this full time in 2008.
Scott Benner 23:24
So incredibly, David, your story of mine are exactly the same. Except I started writing a blog to help people with diabetes. Had I had an endowment, I might have done something different. But But But literally, I'm going to ask you, did you have that feeling inside that I need to help but I don't know how to help. Let me find other people who know how, and I'll support it.
David Panzirer 23:46
Yeah, so I, the answer is I came to that later I'm I made a very, very simple promise to my daughter who is six at the time. And I said to her, Listen, I'll help you in any way that I can. And you know, my wife will tell you if, if you want to get my attention, you got to slap me upside the head. Like I don't take a subtle hint. And these two events happening five months apart was a pretty good slap upside the head. I didn't really understand the enormity of my position. I didn't understand how big an opportunity that I had because I was naive. I knew nothing about the space. So yes, I did seek out somebody to help. I wrote a letter to Lee Iacocca, and I know that you're old enough to know who he is somebody who could you talk to have no idea who Lee Iacocca is that letter we ended on the desk of this guy Dana ball. Dana was running the Iacocca foundation at the time, we Iacocca, his first wife had died of complications from type one. Long story short, Dana became employee number two at the Helmsley trust and I did not poach him from Lee Iacocca he had left but he came to help me build the program. And he had spent seven yours in the space prior to come in to work with me. And you know, we kind of had a pretty good Dana was a visionary and I was kind of just line them up and knock them down kind of guy. And, you know, we created an art program that I think is a fairly robust, it's obviously evolved over the 16 or so years or 15 years that I've been at this. But yeah, I sought help right away, I started traveling and learning,
Scott Benner 25:29
okay, so you kind of immersed yourself in two different worlds, you have to find out if to start learning about diabetes and what the needs are. And you have to understand how to how to work in this charitable organization that you were not part of prior to that
David Panzirer 25:41
correct. And really understanding the, you know, how to, ultimately I knew that a business approach had to be brought to this. And that's what I pride myself on because I was like, the end of the day, we want to deliver a drug and devise a therapy, something to market. So I brought that approach. And I went out learned I spent 18 months living out of a suitcase traveling and learning before we ever wrote our first grant.
Scott Benner 26:07
That's amazing. It really is. And, and in fairness, your daughter's not diagnosed with type one, the trust would have went off and done other things, they wouldn't have had any connection to this at all. It's just correct that, do you think that that brings any comfort to your children? At all?
David Panzirer 26:24
No. I think it probably does. But they also know, it's funny, because my daughter would ask me sometimes, you know, Dad, I get these questionnaires that asked, What are you? What are your parents do for a living? And she's like, I don't even know what to put for what you do. I just know you do something and diabetes? And, you know, I used to laugh at that. And you know, I don't know, you know, I kind of I think you you can certainly ask them. But I do think that there's comfort in there. But I also think that they have come to understand the same way I have that my obligation is not just to my children, but to everybody living with this disease. And I've been given a huge platform. And, you know, I've got to dig in and do it. Yeah. 110% It's kind of the only way I'm wired. I understand. So I feel a pretty strong sense of obligation to everybody living with this disease. Not just my kids, you know, thankfully, my kids are empowered and they do their own thing. And I kind of alluded to this before, after three weeks of When Morgan was first diagnosed after three weeks, she had, we had a three month a three year old and a three month old at home when Morgan was first diagnosed. And I'll never forget this because in the middle of the night, Morgan's blood sugar's were like 400 or something. And she had shared a room with her sister Carolyn, and I brought her into the bathroom, she was kicking and screaming and crying, I don't want a shot, I don't want a shot. And I said, Listen, I either have to give you a shot, or I have to bring you to the hospital, but you need insulin. And she kind of listened to that. And then looked me dead in the eye. And she said Give it to me. And I said, What did she say? Give it to me, I'm doing it. And you know, it took her 45 minutes, but this six year old kid gave herself a shot in the stomach. And I always kind of joke around a little in that all of the pan zeros were all control freaks. And I think that was Morgan taking back a little bit of control. But from that point on, she did her own shots. She kind of picked my wife and I up off the floor and put us on her back and said all right, we're gonna go do this. That's incredible. And yeah, pretty, pretty strong kid. And Caroline, you know, 10 years later, was diagnosed at 14 and she had the benefit of having a CGM. Right. So she went, she was in trial on that for seven years. So we knew she had the antibodies. And you know, when she turned like 14, she was like that I'm done with Tron that I'm not doing it anymore. I said fine, you know, can't force her it used to be she used to get the 50 bucks for Tron that and that was a good enticement for her because like, that's not enough anymore. Long story short, I said, you don't have to do it. I said, we just got to throw a CGM on your week, every few months. I gotta make sure she's like. So of course we put a CGM on or that summer and you start seeing 220 And I'm like, Oh Christ. There it is. Yeah. And we started her on insulin right away and she enjoyed a about a three and a half year honeymoon. But we caught her very early and you know knock wood both girls are doing well. Yeah.
Scott Benner 29:37
Did she did you always expect that she would something from town that happened right? She had markers.
David Panzirer 29:43
Correct. She had four to four markers. Okay. So her chances were basically 99% within 10 years
Scott Benner 29:52
Yeah. So can you talk a little bit about that because trial nets been an on again off again sponsor they're not right now but I'm a big supporter of them.
David Panzirer 30:03
Yeah, so I think it's kind of this double edged sword, right? Because I would argue, a child like Caroline, who had all four markers, she had type one at that point, she just wasn't symptomatic. Right? If that were cancer, you would go and treat immediately. The fact is, we have nothing to treat with. So I think in order to begin to develop things to intervene with earlier, you have to have things like try on that, to do the screenings of these first degree relatives. But in my mind, I am 1,000% Convinced that at that time, Caroline had type one diabetes, she just had no symptoms.
Scott Benner 30:39
Was it valuable for her to have that information and for your family as well? Because that's the art. No, that's the argument. I always hear from people. They're like, well, I want to just live like, it's never gonna happen. If it happens. I know what it looks like, I'll see it coming. versus, you know, what happens when you find out early and you're able to manage? Like, I mean, you said for like, three, three and a half years, right? With?
David Panzirer 31:01
Yeah, so I'll give you the I'll give you the kind of both sides of that equation. So we did not tell Caroline. She, you know, my son, Luke was screen two. And Carolyn would always say, Well, Dad, why do I have to go to trial that Luke doesn't? And I would say, well, you're at higher risk to get type one. And she would always ask me, she was such an inquisitive kid, she would always say, Well, do you think I'm gonna get it? And I would always answer the same way, because I didn't want to lie to her. But I'd say I hope not. But I knew what the statistics were, but I thought there was zero upside to kind of saddling a child with that kind of burden. You know, and I wasn't going to do it. I mean, my wife and I already had that burden. And we were, I don't want to say we were fine with it. But obviously, that put us on high alert. So we did catch Caroline early, we did intervene with insulin right away. And I would say, in my opinion, that's why she had such a long honeymoon. To this day. Carolyn is probably on half of the amount of insulin that somebody her size normally would be. And it could be. She's an exercise fanatic. She eats really well. So it could be all of those things. Sure. But she's still on about 2025 units a day total for about 135 pound kit. Wow. That's crazy. Which is Yeah. But she'll see you take her off insulin and you see crazy excursions
Scott Benner 32:30
as well. For sure. No, of course. Okay. Yep. Just, you know, I mean, listen, we did it might we did it for my son, he, at the time didn't have any markers. We did not keep up with it afterwards, because he didn't have any. But then, you know, Geez, 10 years later, he, he got Hashimotos, which was what really hit him very hard. Because we couldn't, his symptoms were not classic. So he got hives from his, from his waist to his, like his neck. And that and that was it. If his body he loved he broke out in these painful hives. So of course, it got treated as like a topical problem at first and it took my wife and I sitting down and reading NIH articles until one day the word hives popped up in front of us associated to Hashimotos because he had the other he had other symptoms of Hashimotos. But they they kept talent, like we did maybe six months prior have his blood tests and like, no, it's fine. And, and we were like, okay, okay, it's not that then you know, you then you put it out of your head, and then something comes up and you think, oh, no, we've addressed that possibility already. And anyway, it took six weeks to figure out that's what he had another five, six weeks for the medication to start working. You know, in that time, they treated him with steroids and a number of other things when they thought it was more like an any histamine problem. And it was hard on him. He's a college athlete, he gained weight from the steroids. He couldn't work out because he'd break out and he pulled himself back together quickly. But it was a it was scary. And during that entire time, I thought, Wow, this was the moment ha his body got taxed. Somehow his immune system went the wrong way. This could have been diabetes. Like that's what I sat there thinking like he got he got Hashimotos. But this could have been type one. How about that? And it's just scary. It's never going to not be scary. I mean, you're probably going to wonder about your son until the day you go.
David Panzirer 34:26
Yeah, I mean, there are times where, you know, he gets cranky or irritable and I'm like, Go prick your finger.
Scott Benner 34:35
Before I get upset, let's make sure your blood sugar is not really something so the girls are older. I'm assuming they manage themselves pretty much are you and your wife involved?
David Panzirer 34:45
So we're involved peripherally Morgan is a junior in college. So she she very much likes the fact that we're on Dexcom share with her and that I'm I'm kind of an insomniac, I don't sleep very well. So I'm definitely on the night shift. And I think that brings her comfort. I will say, when we first got share, we had to have Morgan called me after two weeks of being on and she was like, Dad, we got to talk. And like, what's the matter? And she's like, you're driving me nuts. She's, so we came up with kind of rules of engagement as to when I'm allowed to reach out to her and when I'm not, and I begrudgingly abide by those rules, and that, to me, the Dexcom share changed our lives because what it was was peace of mind. For me, right? I could turn around and look on my phone and say, okay, she's not at a dangerous place. And it was a game changer for us for college as well.
Scott Benner 35:43
Yeah, the worry piece and she's she reasonably close to you or no? Yeah, she's two and a half hours away. Okay. That's how far my son is my daughter is going about 13 hours by car away. And that's a plane. Yes. And I'm worried, a little bit, but not as much as I thought I was going to be. But, you know, I've also been slowly handing her care off to her over years and years and years. And she really does, you know, over the last 910 months, she's basically been on our own, with me just kind of looking over his shoulder. Because I said, look, let's just practice like you're not here. You know, let's do what we would do. I did just order something called Sugar pixel. Which I think that's the alarm thing, right? Yeah, it's gonna be interesting, because it has that puck on it that will vibrate. And so we're gonna try it here at the house and see how that works. Because I don't know about your girl's mind. Not going to wake up in the middle of the night for an alarm. So
David Panzirer 36:38
yeah, so Morgan sleeps like a brick. And the one thing that we did, when we when she first went to college, we insisted on meeting the roommate and getting the roommates phone number. And it talks about irony, Morgan got introduced to her roommate, through a mutual friend, they met up, she lived a couple of towns from us, they met up and she, they decided they were going to run together. Morgan then further on, learns that this girl's mother is a pediatric endocrinologist. So I'm like, You gotta be kidding me. Like somebody's looking out for me. Right? Perfect. Yeah, so we were able to teach her about the Googong kit, teach her about the highs and the lows. And, you know, in northward in the three years that Morgan's been away at school, we've only had to call her once, okay, to intervene for a significant low that Morgan was not waking up to. And it was if I didn't do that next call was campus security, which I've heard horror stories from other parents where they broke down a door and the kid was just sleeping on the center. And it was an artificial Well, right. Yeah,
Scott Benner 37:44
you don't need that. It makes you it doesn't make the point though. Like, you know, a compression low which I'm, by the way, a little hopeful that G sevens form factor might take those away a little bit. But when it comes, but yeah, but you can see compression low. And you can trust it. When you're up the hall. You got to congressional I'll wait a couple of minutes, but not two and a half hours away that you're not trusting. Yeah,
David Panzirer 38:07
yeah. And not when you're seeing double arrows down and the word low on the screen. That's like
Scott Benner 38:16
yeah, that you're that you're not trusting. I can see that. I don't know how I'm going to actually feel when she goes. I know at the moment. I'm very comfortable with her understanding of of her care and how we do things. I might make her start listening to this podcast a little bit, but I'm sure she'll hate that about as much as your daughter didn't like you bothering her. I was wondering what the what were the rules that you and Morgan came up with about contacting her?
David Panzirer 38:43
Yeah, so basically, if I saw that she was high and stayed high for longer than four hours, I could contact her because we all know once you're high, it takes her a while to start coming down anyway, if she was low, and I didn't see that we plateauing or heading back the other way, after a half hour, I could contact her. And if I saw anything, like below 50 I could contact her. So those were kind of the rules of engagement. And usually I got, you know, the response of duh, or I got it or Yeah, okay, no, okay. You know what? I was cool with that because at least I knew that she was on it.
Scott Benner 39:21
Yeah. Isn't it funny how that makes you feel like even just anything? Just just say, Okay,
David Panzirer 39:27
I know life. Yeah, give me the sign away.
Scott Benner 39:29
Let me know you're on top of this a little bit. I did it this morning, Arden's at school and her blood sugar started raising I was like, I was like, Hey, what's up? She doesn't answer me and I'm like, Hey, have you eaten something? No, no answer. Arden Hello. What?
David Panzirer 39:44
What? Yeah, she on tandem or on the pod or what?
Scott Benner 39:48
Arden uses? Arden has an omni pod and G six. She is current. She's currently looping with her Omni pod. Sure. Yeah. So we actually are going to try on the pod five as soon as we can. get our hands on it and, and see how we like that. But I mean, she's been looping for a couple three years now. And it's been really terrific actually.
David Panzirer 40:09
Yeah, loop is amazing, um, Morgan loop for five years. And she loved it. You know, the one I don't know if you found this the one thing that we she hated carrying the extra Riley link and charging an extra thing, right? It's annoying. They understand with the new pod, you don't have to deal with that, because it's Bluetooth in your talk straight to your iPhone, right. But whenever we would stay in hotels, her her Riley Link must have gotten interfered with things, but it would always dropped out. I don't know if anybody else's. And I've been in the group and I talked to Pete Schwalm, you know, online and trying to figure it out. He said, I've never heard that. But inevitably we'd stay in a hotel and that thing would drop out. We switched
Scott Benner 40:49
to the orange link a year ago. And that's been more stable for but she just doesn't like having to carry an extra thing. So that's the impetus for trying AMI pod five or, you know, I guess we could always I guess somebody's in the middle of developing loop for for the dash pods right now as well. So,
David Panzirer 41:07
yeah, so we're funding and have been funding title to bring loop through the regulatory system and hopefully be like an FDA approved app that you can download an app store? Yeah. You know, my hope is that that happens, you know, this year? Really? I don't know. Yeah. Okay. But it's, it's a earlier version of loop, right? The DIY community is significantly out ahead of industry. And, you know, where, where the where type of whoop is, but it's still way better than even, you know, my daughter's switch to tandem control IQ. She was on the pod for a bunch of years, too. And we were looping within the pod as well. And then she started developing a rash to the Yeah, I mean, not just a rash, like blisters, like it was really bad. And we tried all the barriers in between. And finally, she's like, this is a pain in the neck. I'm done with this after something else. That makes sense. Yeah. Do we swap that? Dan,
Scott Benner 42:11
do you think that I know, you're you're probably just funding it. But do you think the process of getting tide pool through FDA the first time would would open up the possibility of getting like a an updated version of the algorithm through quicker the second time?
David Panzirer 42:25
Yeah. So look, I'll give you my understanding of what the FDA is looking to accomplish here. And I think it's a pretty interesting thing that they're trying to do. Right. And this is me talking about Helmsley trust. But my my, my point is, the FDA has themselves an issue in that they know that there's a bunch of people out there five to 10,000 people out there that are running around on hacked insulin pumps, they have absolutely no ability to regulate this. And quite frankly, it would be a public relations nightmare to try and shut this group down, and they wouldn't be able to do it. So they have very much been supportive of the nonprofit's Helmsley JDRF and others bringing tide pool loop through the FDA process. I think and these are my words, not the FDA words, but I think what the FDA would like to see is have tight pool be kind of the sandbox that the DIY community can play in and have those improvements filter up through tight pool to legitimize them, right. The fact is, the DIY group will always be three or four steps ahead of anybody else, because they don't have to meet the rigor of the FDA. However, as you know, with the folks in the DIY community, every single one of them or people like us, except, at least in my case, I lacked the expertise to do what they've done, but they clearly have it.
Scott Benner 43:58
Yeah, no, I mean, the the amount of time it took for someone to take art in the version of Luke we were using, which was making adjustments with basil. And then suddenly it was making boluses to make adjustments and I can't even tell you how well it works. It's astonishing. I mean, she could almost Artem could almost ignore what she's eating and not Bolus for it. And I think that the auto Bolus version that she's using now would at least keep her under 200 which is
David Panzirer 44:25
that's impressive. Yeah,
Scott Benner 44:27
I think it's fast especially
David Panzirer 44:27
with today's insulins because the insolence takes so long to start working
Scott Benner 44:32
Yeah, no artists been using a pizza for a very long time. I find it to be a very smooth acting like kind of kind of I don't know there's not as many peaks and valleys as she had with other insulin in the past. So interesting. I like it and and we know how to use it. So her settings I mean, it's all set. The whole thing is settings right? Like if your settings are right, and you get your settings to match your Novolog or your a pager or whatever, Humalog whatever you're using. That's the whole thing. I mean settings Pre-Bolus eating meals, understanding the impacts of different foods, you know, understanding that fat and protein needs insulin is pretty much, you know,
David Panzirer 45:09
yeah. But Scott 99% of people don't understand half of what you just said, yeah,
Scott Benner 45:13
they do if they listen to this podcast, don't worry. We talked about it in a way that I'm so sorry to tell you a little bit about me. I guess it maybe you don't care. But no, I do care. I appreciate it. I started writing that blog very long time ago, it was completely just raw nerve. I didn't know what I was doing. I was trying to help. I was raising money for JDRF. And I was just trying to draw attention to what was going on. It all kind of started when I first had the idea, like, I can't help I'm not a doctor, I'm not a scientist. Now my daughter has this thing I can't help with. Maybe I can draw attention, like put eyes on it. I'm a good writer, maybe that'll be the thing. And then one day, I read this article about this person who was on the Northeast Corridor line overnight, and they got thrown off a train for being drunk. And in the morning. Yeah, in the morning, when people came in to go to work. One person recognize this guy's not being drunk, but being low, because they had a sibling who had type one. And they stopped and save a guy's life. And I thought maybe I'll write something on this blog that one day, we'll reach out into the world and meet a person that will meet my daughter and help her and was my first thought of after a couple of years of writing, I started to realize that it wasn't enough to just spread awareness, for me at least. And it wasn't enough. People just understand it. Like I didn't, I realized there's a lot of comfort in community. And I do think community is incredibly important. But I realized one day, it's not enough just to know someone else is low at 2am. Like, that's comforting. And it's nice. But what if we could all figure out how not to be low at 2am? And I started thinking about why am I not good at managing my daughter's blood sugar's my daughter was two and she was diagnosed. So I start, I start writing this blog when she's three, you know, 3456 years old her a one season the eight. So I don't know what I'm doing. I always feel like I'm killing her. You know, I'm a stay at home dad. So it's largely on my shoulders. And I just thought I have to figure this out. So I went to my daughter's endocrinologist to her nurse practitioner, actually. And I said, If I gave you a magic wand, what would you one thing you could do for people with type one diabetes, what would you do and she said, like, without hesitation, she said, I would make them not be afraid of their insulin. So I went about writing about not being afraid of insulin, which was just me talking myself into not being afraid. And then once I lost the fear, I started just looking at the things I had learned, I step back, like so instead of being in the fight constantly, I decided just to get kind of macro and step back and try to figure out I thought I must have learned something in these years, you know. And before I knew it, I started putting these things into place. And ra one C 987. I couldn't stop it from coming down. Like, you know, I live for years without being able to move it. And then suddenly, by doing the things I knew to do all of a sudden, and not being afraid of the insulin, Arden say once you just dropped right into the fives. And one day, one day, I said to my wife, I have a system. I was like, I don't call it anything. It doesn't have a name. I don't It's not written down somewhere. But I know these things. And if you do these things, this is what happens. So I switched my blog over to writing about how to manage yourself. And it was a big leap. Because, you know, you're, I mean, you tell people, you're not giving medical advice, you put disclaimers all over everything. And I'm just sharing my opinion of whatever you got to say. But it's still scary, you know, to put it out into the world. But I thought it was what the I believed it's what the space was missing. So what I was noticing is that I knew people who had great agencies and stable blood sugars. But even if they were in the space, they never talked about how they got them. They'd always keep it light and community and I'm here for you and support, which again, I think is great, but again, not enough. So I just went I just went all in on it. And I would start getting 123 letters a month, hey, this blog, this blog is really helping me my agency's coming down, I have more stability. And then in 2013, someone approached me to write a book and wasn't about diabetes. I wrote my book, and I was doing the the media on it. And I was I was getting off stage at the Katie Couric show. And Katie, Katie, she grabs me in the wings and she says you're very good at talking to people. And I said, thank you. And about a year later, I realized nobody was reading blogs anymore. And I thought, well, Katie Couric says, I'm good at talking to people. So I made a podcast about it. And now that thing that used to get me a note or two a day, I probably get a dozen of them a day now, that's awesome all over the world. So,
David Panzirer 50:07
you know, it's kind enough to in that, you know, I always say and people read if you don't have type one or you're not involved with type one people don't really understand type one. And there's no way to really explain that well, and I tell people, I said, Listen, your, here's the best way I can explain it to you is you take a drug insulin, you're dosing that drug, many times a day, that drug can kill you, and you make all these decisions 99.9% of the time without the benefit of a clinician. And if you get it right 60% of the time, you're doing amazing. And it's, it's so hard to understand the burden of this disease. And I think part part of it is what you said, which is the education and knowing what to do, but part of it also is, is having a support system. And I think you know, very rarely, in this country, at least, we don't treat the whole person, we just treat symptoms, and the mental health thing, I guess, if there's a silver lining around COVID, it's highlighted two things that we've been interested in for a really long time. And that's telemedicine and mental health. And COVID has kind of highlighted both of them. But when you look at diabetes and type one specifically, the burden is never ending. It's 24/7. It's you know, and people just don't, it's very hard to wrap your head around that unless you're whether that,
Scott Benner 51:29
yeah, so what I what I think I've done with the podcast, because the podcast started off, I just thought I was gonna like, I was so bad. In the beginning, I tried to read a blog post, like into the microphone, I got like, 20 minutes, and I was like, this is stupid, and I stopped. And but what it's kind of become is, it's my knowledge dispensed out over conversation, because I realized, like, I'm not going to if you wrote everything down and bullet points, nobody could remember, right? It's out of context, you don't have any background, your perspectives all skewed. Also, you believe all the things you've been seeing for years, which are likely I always talk about like, people are just chasing ghosts, they don't really know what's happening with their blood sugar. They they see things they believe, usually they're aberrations. So what I ended up doing was I said, though, here's what I'm gonna do, first of all, I'm never going to interview anybody who's already in this space. Because their practice than they are stilted, and they have a talk and they give their talk. And I've genuinely still stuck to that. I put people on who just have diabetes, and I talk to them. And we just have conversations, they go where they go. And when I hear something that I can respond to in a way that will help that person and I believe help the people listening, that's when the conversations dig down a little bit, about 200 episodes into it. I firmly believed if you just listen to the 200 episodes of the podcast, you're able to see what come into the 60s. And I was right because people do it. But I started thinking, Alright, this is crazy. Like, I can't ask people to listen to 200 episodes of a podcast to have some like health success. So I reached back to a CDE, who has type one diabetes, who I'd heard on the podcast a couple times, and I always jived really well with her. And I said, I'm gonna take these, these these moments, these these ideas that I know are singular, that are spread throughout the podcast, and will you help me drill down and put them in specific episodes. So we made this thing called diabetes pro tip. And since then, we've added defining diabetes, because I found that you'd be shocked at the terms that people don't understand. And moreover, even if they've heard them, they don't have like everyday knowledge of them. We did that we did. Gosh, variables, how people eat, I do a whole afterdark series where people talk about the things that nobody talks about, you know, having type one and being a heroin addict, or a sex worker, or you know, by having bipolar, like things that people really live with, that nobody talks about. And you know, so they get sprinkled in, but mostly the show goes up four times a week and three times a week. It's just a conversation with somebody. And then on the fourth day, there's something that's a little more drilled down with Jenny awesome CD and it just David, it just works. It's you can jump in anywhere. I've heard from people who are high school dropouts, to people who are physicians themselves who can't manage their own or their kids diabetes doesn't mean it doesn't matter if you're a parent or an adult living with type one. This podcast will help you. And it's the it's the only thing I've seen so far. That the only I mean, where it falls short is that I don't know how to I can't afford to translate it and other languages. Like that's really where it falls short. And I get contacted by Spanish speaking people particularly. And I just tell them like I don't know what to do. I'm sorry. But I do think I do think there's value there as well. Anyway, I there's a young girl right now who is a grad student who is going to do she's she's building a survey to look into how the podcast helps people as awesome. Now, I'm just incredibly proud of the whole thing. So I do think my point is, is that you can, you can help people. I alluded to it earlier about about lowest common denominator alike. But the way I see it is the way we talk about is if there's 20 kids in a class, you don't teach to the top five, you don't teach the middle, you teach to the bottom, because everybody can understand that. But I just don't believe in that, I think you say what needs to be said, and then find a way to say it to all of those people. Before I started recording the show, and I just had the blog, people would put me in contact with people. And I would kind of walk them through how to I basically, David, I have about a 45 minute talk in my head, I could get you on the phone and level your blood sugar out. So I was doing this one day with this girl. She was very young, she was a drop out,
she had a baby, the baby had type one, I gave her my best explanation about how to Bolus for meals. And she said, I'm sorry, I don't understand what you're saying. And I was in this moment where I thought I either have to hang up on her and tell her I'm sorry, I can't help you. Or I have to find another way to say this. And so I just took a deep breath. And I started over again. And I came up with this kind of allegory for tug of war. And how Bolus thing a meal is like tug of war. And I gave it to her over the phone. And now it's in the podcast. And there are people who I respect very greatly who think that that's the best way they've ever heard a meal Bolus described. And it only came out of panic. Because I couldn't hang up on this woman. Her kid was three, four years old, she was short diner, she's trying to help this baby. She doesn't know what to do. And I just I couldn't bring myself though, just tell her I'm sorry. So I just tried again. And it led me to believe that everyone can understand this stuff. So I see my job as distilling these ideas that I had back on that blog down so far that anyone can pick it up from anywhere. Let's start running with it.
David Panzirer 57:08
So I just got I couldn't agree more with you. And I certainly believe that our health care system does cater to the lowest common denominator. But I also think that we sell everybody short. Yeah. And, you know, we're actually funding research in Sub Saharan Africa in type one diabetes, where, number one, we're educating people around type one and some of the things that we're finding very small studies, but some of the things we're finding is just T one D specific education lowers a one C two points. Sure. I imagine, right? Just just education. We're now running, as far as we know, is the first study ever in Tanzania, with CGM with these people, and everybody was like, oh, you know, they're never going to be able to do it. They're not going to understand that they don't understand numeracy. And I'm like, this isn't that hard. Like we can teach them and support them, and hopefully empower them. But if we don't try how are we ever going to know you're just selling them out? Before you ever try? Yeah, trials happening right now? TBD. Whether it works. I'm willing to bet a lot of money though. It's gonna work.
Scott Benner 58:15
I don't even think the math is important. I'm gonna say like, for me, if you listen to the podcasts are heard part of the podcast exists because I just I'm not good at math. And the stuff they told me in the hospital, I was like, What am I? I can't do this. So I mean, especially with CGM, right, it's just really, it's just timing and amount. It's putting the right amount of insulin at the right time. It's impacting one bell curve with another bell curve, you just you know, I talked about it a million different ways. It's making sure you have enough people blocking so they can't get to your to your quarterback like it's all just, you know, I've talked about like being a mind pushing on a wall, you just need the, you need equal amounts of force coming from both sides to hold each other up. So nothing collapses. And when you start talking about it as like, insulin to carb ratio and insulin sensitivity factors and everything people's mind, my mind shut off. The first time somebody said glycemic load index to me, I thought, I don't care about that. I'm never going to pay attention to that. And yet, if you if you cornered me right now and said, Scott, five minutes left in your life, here's a person with type one diabetes help one more person, I'd say timing and amount, you have to Pre-Bolus your meals, you have to understand the glycemic load and glycemic index of your foods. But I wouldn't say it like that I would have I would say that different foods have different impacts on your blood sugars and despite their carb counts, for instance, 10 carbs of this may require a unit while 10 carbs of that may require two units. I would never say to somebody you have to understand the glycemic load and index of your foods because it's it's your eyes glaze over. It's off putting. It just is and so when so when people are in this situation to begin with and you describe eloquently earlier, I say I felt to me like somebody hit me in the face He's with a shovel and then started yelling algebra at me. You know, my kid, my kids, you know, my kids got a disease, she weighs 17 pounds, she's two years old, my life had been pretty perfect up until about five minutes before that no one had ever been sick. And now people are telling me about all this stuff, and using all these technical terms. And now in hindsight, I look back and realize they didn't even know what they were talking about. They were just regurgitating something back to me. So, you know, like, that's not where you meet people. And I'm a huge believer in that you have to find people where they are and give them the information that they need. And I realized now in hindsight, I treated that girl on the phone differently because she was a dropout. And because she was a young mom, but that's not even fair or accurate. It's just who she is. Right? And she needs to hear it a different way. And, and I needed to hear it a different way. And so does everyone else. And it turns out that there's a distilled way to say these things to people that everyone can understand. So
David Panzirer 1:00:59
I think you hit the nail right on the head as far as you really got to meet people where they are, and speak their language, whatever that may be. And I think that we do a really good job of listening to the very vocal minority without ever asking the majority of people, what do you really need? Sure. And it's one of the things that we've been really pushing hard on, is to really understand what what do you what do you really need, as opposed to what do I think you need? Oh, yeah,
Scott Benner 1:01:29
no, I, I genuinely think that most of the effort being put into diabetes and maybe other things as well, is misguided from some some knee jerk reaction that someone had at some point. You know, don't, don't tell people about your successes. It'll make them feel bad. What if it made them feel aspirational? instead? What if you what if you didn't rub it in? Instead, you said, Hey, look at me, here's how I used to sit on the podcast. I'm an idiot. If I can do this, you can do this. Right. And that, to me is it's aspirational. And I've had people, there's a woman who was on the other day, she's got type two, or kid has type one, they both use the podcast, and they're both having great success. Type Two diabetes,
David Panzirer 1:02:07
every single marketing campaign in the world is based on people wanting to mimic what they're seeing on the screen, right? Yeah, it just, why is it different? I'm sorry to interrupt. No,
Scott Benner 1:02:16
no, no, you're not interrupting at all. It's even. You have to get past this stuff. Everybody gets stuck on like, it's easy to see that people like to argue about what they eat, for example, like everybody gets very tribal. I eat this way you eat that way that everybody wants to fight. And before you know it, you think everyone fights about this? Well, everyone doesn't fight about this, the people online that you see are fighting this, they're a very small percentage. Most people are not at home concerned as to whether or not you're vegan, or you eat only protein or whatever the hell else. No, but this is the vocal minority that was talking yes, no one cares, generally speaking, but we get, we get, you know, kind of we can get tricked into it. And I'll tell you that I'm very proud of the moment when somebody came to me early on in the podcast and said, You can't talk like this the people. I said, Not only am I going to talk like this to people, I think it's imperative. And if I'm not going to do it, then why am I wasting my time shoveling this regurgitated content into these people's mouths? That you guys have been shoveling for 10 years in this space? I mean, how many times can I read an article about the best recipe for Fourth of July for your blood sugar? Like it's enough already, right? Like, let's actually teach people how to use their insulin. It's the whole game. It just it just made sense to me. So anyway, I got all upset there. Sorry.
David Panzirer 1:03:31
No, no, I totally get it. I understand. We have to, you know, the status quo is not good enough. And let's just face it. We have failed miserably as a health care system in this country. So why not try something different?
Scott Benner 1:03:45
Yeah, no, I agree. I'll tell you that right now, when people come into my Facebook group, which has maybe 25,000 people and at this point, all helping each other with insulin type twos type ones, really, it's a great space. I have a little intake form, and more and more and more. How did you find out about the podcast, my doctor told me? Wow. So that's impressive. It is really, it's really getting there. And I'm sure you know about
David Panzirer 1:04:10
one of our one of our new projects that I just want to plug for a second. So we started it started way back. And in 2018, I started thinking about it with my team. And I'm like, we really need the Geek Squad for type one diabetes, right Best Buy's Geek Squad everybody understands this. And I actually reached out to the founder of BestBuy his name was Dick Schultz. I think he's like 82 years old. I had to write him like a four bullet email so that he could decide whether he would take my call. So bullet number one was I don't want your money. You know, and I came up with three other bullets about what I wanted to talk to him about. And he was sharpest attack. He's like, David, you know, you don't really need to Geek Squad because what's out there and what's coming, you can do almost all of this virtually. So then when you look at the lower social work economically challenged are the social determinants of health that really screw people in rural areas, we decided that we're gonna go and try and pilot a, what we're now calling what's a brand new organization, we acquired a company at the end of December, we spun them out into a new nonprofit called blue circle health. And blue circle health is going to be in a nutshell, it's going to be kind of like the St. Jude's for type one diabetes, but for the lower socio economically challenged. So what if we create a system that doesn't have to cater to the fee for service model, and doesn't care about where you come from, but we're actually going to put patients front and center we're going to do the right thing by patients. And that's what blue circle health is going to try and do, we're going to pilot in one location. And we've done a lot of diligence. You talked about meeting people where they are and understanding what they want. I've learned that the hard way, by having preconceived notions that were dead wrong. But we spent a decent amount of time now in federally qualified health centers, in areas where people with lower socio economic status live with type one diabetes, and we talked to them. And we had consultants to ask them, What do you need? How can we help you. And after speak with a whole bunch of them? The irony is, one of the biggest things that came up almost 92% of the time, was we need help navigating or insurance, ie I can't get my supplies, right, we have a system healthcare system today, that doesn't actually enable care, it puts barriers in front of people. And, and I believe, you know, systems like things like prior authorizations, or reviews, or third party reviews or denials, they're totally put in place so that half the people go away. And don't even try, right, when you have a group of people who don't have the wherewithal to challenge the system. And their set. 92% of them are saying we have insurance, but I still can't get my stuff. Right, and you're fighting about a drug that you need to stay alive with insulin. That's just, that's a pretty huge indictment on our healthcare system. And we're going to try and go out there and be an example. For at the very least, remove all that stuff, we're going to remove all the barriers to care. So if we, if you can't get your supplies, we'll deal with your insurance company, where we call it, we're calling it the insurance cost the errors, I don't know what we'll end up calling it but in a nutshell, it gives me my when I need it without all the hassle. And we're gonna go and really deliver care, right? If you're poor, and you don't have a phone, we'll give you a phone, we'll pay for the service. But you have to lean in a little bit and allow, you know, allow us to help you. So one of the major pieces of this is obviously going to be CGM, and teaching people and having peer coaches that come from their area speak their language, with with type one diabetes. And the we have a project going on right now that's piloting this in a research study. And as you might imagine, it's unbelievably successful, because people are being engaged in their own backyard with a trusted peer. And you alluded to it, I think a little earlier, there was so much clinician bias that we hear all the time, the example you just gave of your own bias, just speaking to that woman, right. We all have it, providers have it. But it's really selling people short. And we're going to try and attempt to change that paradigm.
Scott Benner 1:08:42
You're going to save people's lives. I am. I'm often reminded of a mother of a shed a lot of kids, I think seven if I'm not mistaken, and someone on Facebook, put her in touch with me one time she had diabetes, and she was 16. She was in her mid 30s. She was starting to have problems from from her type one. And she was online looking for help. And we got on the phone together. And I gave her the talk I gave her my 45 minute spiel, I told her what to do. She had a CGM. She was using it all wrong. day or so later. She sends me a note. She says Can I call you back? She calls me back. She's crying. And I thought, gosh, what happened? You know what I mean? Like why she's so upset. Turns out she wasn't upset at me. She was upset at everyone else. And then she showed me her graph her nice stable graph overnight where her blood sugar was 90 all night or whatever it was. And she said, how could I have lived this many years? And no one told me this. And I said, I'm sorry. I don't know. I said, you know, I all I can tell her was like just move forward from here, you know, but she had so much like seething anger inside of her because she had lived so unhealthy for so long. And people told her that this was the best she could expect. And it's not the best she could expect. And people in Ecuador don't have to use the sliding scale or whatever other crap stuff people tell each other. because they don't have the answers for you, or they don't know how to talk to you or they don't have the time or whatever the reason is that they won't spend 45 minutes with you to fix your, your health issue. That's amazing that you're going to do that. I think that's really wonderful. That you
David Panzirer 1:10:14
know, I'd actually love to hear your 45 Minute Talk. Obviously, not now. But I'd
Scott Benner 1:10:18
be happy to give it to you sometime. I, I'm more proud of that talk than anything I've maybe I've ever said out loud.
David Panzirer 1:10:24
So is it out there on the recording that I can find? No, I just
Scott Benner 1:10:27
give it to like small groups. I don't make it public, usually, because it's, at least when it's alive. I can answer people's questions. And if there's confusion, you know, if I, if I had a little bit of a demo, if I had a little bit of indemnity between me and my, you know, this is just me. Yeah. So it's a tough situation, but I'll tell you what, I'll get into a plane or a car, I'll go anywhere and give it to anybody. You can quickly change your understanding of how to use your insulin and, and very, very quickly stop the highs stop the lows, stop the overtreating of lows that create more highs, you just have to understand how insulin works. And it's just it's not difficult. It's I find it kind of easy to explain. So, you know, you let me just
David Panzirer 1:11:13
cut it. Yeah, I got it, I have a question for you. And that is, so one of my daughters and her friend are going to be interning and doing a little bit of diligence for me at the trust around and I've got them. I think it starts next month, actually in May. But what I would love to do if you're up for this, and obviously we can take this offline, is I'm trying to create kind of this, understanding what people need and how to help them. So we've got a lot of these interviews that I was talking about through the consultant, we have them recorded. So I'm going to have my daughter and her friend go through all of these recordings is upon to them and see if they can distill out some common themes as to what's needed. We know there are but I want, I want these kids to do it. I wondering if you'd be up for it to have that 45 minute talk with the two of them? Because I'd love for them to distill. And I would I would join you because I want to hear it. I'd be amazing. Because I would love to hear their version of what they distill out of your 45 Minute Talk.
Scott Benner 1:12:19
Okay. No, I would I would be honored to to do that. I really would. Yeah, I would appreciate them very much.
David Panzirer 1:12:24
So I will definitely set that up. I gotta figure out the exact dates, but it would be amazing to hear my own daughter will be one of them. So it'll be amazing to hear her point of view. And her friends point of view who she's known since kindergarten, right?
Scott Benner 1:12:40
Oh, no, please, you let me know I'm in. I would. Okay, that helps is great. Actually,
David Panzirer 1:12:46
I will follow up with you on that front for sure.
Scott Benner 1:12:48
Excellent. So can you before I let you go? Can you give people a couple of examples of things that you've funded or gotten behind and the changes you're seeing them make in different areas?
David Panzirer 1:12:59
Sure. So one that I'm quite proud of? Is that back in 2010, Helmsley, we went to JDRF. And at the time, Jeffrey brewers CEO, Aaron Kowalski was working there. And I said, guys, you're building a system. You know, they call that the artificial pancreas. I hate that name. I call it automated insulin delivery system, but you're building a system that has a gigantic hole in it, and you're gonna hurt people. And that hole was the sensor. Because at the time the sensors suck, I'm sure you remember. The seven the seven plus? Yeah, we had them all were terrible. Yeah, they were terrible. And so I said, we're gonna put up 12 and a half million dollars. I'd like you guys to put up 12 and a half million dollars more in the fund industry to go accelerate, improve centers. And at the time, JDRF was like, I'm not so sure we need to do that. They reconsidered and they joined us. So we funded Medtronic and we funded Becton, Dickinson. Becton Dickinson center scientifically failed, Medtronic center is actually still on its way to market. It's the one that was just approved overseas. I don't know what they call it now on the market. It was codenamed Zeus back then I don't know what its name is now. And Helmsley back then went on to fund Dexcom G six by ourselves. Okay. So G six what we did at the time, if you remember G six was meant to accelerate the acetaminophen interference. So Tylenol interference with the center was a big deal in G five G six membrane eliminated that. So we funded G six. And you could talk to Kevin Sayer over a Dexcom. And he'll tell you that that probably accelerated their timelines by a couple of years well, of getting that the people and the funding. You can argue why would we fund industry and why would we do that? And the truth is, if we didn't do cadence would have been really slow. But once you had funded like a Medtronic, and then we fund the Dexcom, it forced everybody in the field to accelerate and do what they were doing quicker. Right. So we did that. And then I'd say, we've got a whole bunch of things. But I'd say one of the things that I'm most proud of is very early on, when Dana ball was working with us, we were running around asking where's the data to show how people with type one are really doing in this country, and turned out it really didn't exist. And we had an back then I'm sure you came across this when autumn was first diagnosed. Back then it was, the common thought was, oh, you just take your insulin, you're all set. And that was from payers to the FDA, everybody thought that? Well, we created the T one day exchange registry, which now I don't know how many 1000s of people it has now, because we split it out into its own 501 C three. But I remember going to the FDA when we had data on 3000 people, and the data, and these are the best clinics in the country that were in this right, the average a one C and the best clinics in this country was 8.5. I know. And and the percentage of people who had had a severe hypoglycemic event, or a severe event needing third party assistance, was 10%, within the last 12 months needed third party assistance, right? I can tell you that, we went to the FDA, and I was very fortunate enough to get introduced to Margaret Hamburg, who was the commissioner of FDA back then. And Jeff Shuren, who is still running CDRH. They got in the room. And I remember just like 20 or 30 people from FDA, and we were presenting data, I think we had 3000 people showing them that type one was neither safe nor managed. And I'd like to think that that changed the paradigm of thinking for both payers and the FDA to say, hey, you know what, this week, we have to do so much better, because this is just not good enough. And even today, there's still only roughly 35% of people meeting their ADA recommended targets for type one.
Scott Benner 1:17:06
And it's very hard to get people to take those surveys, which so by the way, I'm very proud to tell you that I personally have put more people on the T one D exchange registry than all of the other influencers combined. So thank you, I am thank the people who listen to this podcast, because they're very good about it. Well, thank you. Thank you. Yeah, it's, it's hard. It's difficult to get somebody takes less than 10 minutes and you feel like you're, I guess they look, the information is really going to help people. This is a great example of how it helps people. So I think
David Panzirer 1:17:34
a lot of times people don't understand. They think, you know, people are going to try and monetize their data, because so many people are trying to do that by No, no, I think the fact that we were a nonprofit. And if anybody did a little bit of diligence, they'd understand what our motives are, and it's pure. At the end of the day, we want to improve outcomes, period,
Scott Benner 1:17:53
right? No, I hear that. Okay. Well, that's amazing. I have something I'd like to ask you when we're not recording if you if you have a minute afterwards. But do you have anything else that you want to do to say or do you think we did a good job?
David Panzirer 1:18:06
Well, I think so. But you're the I'm like the episode number 5000. So you tell me,
Scott Benner 1:18:12
trust me if I'm asking you if it was alright, we're done, and it's good. I really appreciate you doing this. I hope maybe you'll do this again with me sometime.
David Panzirer 1:18:20
Yeah, of course. What happened to you?
Scott Benner 1:18:28
First, I'd like to thank David for taking time out of his schedule to come on the show. I hope he comes back. This was a really great conversation. I enjoyed it. I'd also like to thank us Med and remind you to go to us med.com forward slash juice box or call 888-721-1514 To get your free benefits check. Get your supplies easily from us med thanks also to the Contour Next One blood glucose meter, go to contour next one.com forward slash juice box to learn more about my favorite blood glucose meter, it darn little thing is accurate.
One last time. If you're a US resident who has type one diabetes, or you're a US resident who is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. And take the survey you heard David speak about it earlier. It's an incredibly easy thing to do this very beneficial for people living with type one. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Are you on Facebook? Check out the private Facebook group for the Juicebox Podcast. It's called and you're going to think Well Scott, where did you get this name from? Juicebox Podcast type one diabetes. But you don't have to have type one to be in there. You could just you insulin of any kind really, diabetes is, you know, into diabetes. So head over there. There's plenty of people just like you having great conversations right now about so much I can't even list it. It's just a great space. You could also find me on Instagram, but you know, the Tick Tock wherever juice be just look for me if you if you get the apps, you look for the Juicebox Podcast. If I'm there, you throw a little follow. And speaking, you're following. If you're listening in a podcast app, but you're not subscribed to the show, or following the show depends on which app you're in some say subscribe, some say follow. Please do that huge, huge benefit for the show. And you'll get new episodes lickety split, like magic. They'll just pop up on your phone and they're there if you want them. Subscribe and follow, follow and subscribe.
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