Scott Benner 4/27/22 Scott Benner 4/27/22

#671 Type 1 in India

Preet's daughter has type 1 diabetes and lives in India.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 671 of the Juicebox Podcast.

In this episode, I'm going to be speaking with Preet. Her daughter Nora was diagnosed with type one diabetes not too long ago, and they have an interesting living situation where sometimes Nora is with her grandparents for long periods of time while pre travels for business. This episode is going to give you a good look into what it's like to raise a child with type one diabetes in India. It's actually very interesting. You're gonna like it. 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 health care plan, or becoming bold with insulin. If you're looking for the diabetes pro tip episodes, they begin at episode 210 In your podcast player, or they can be found at diabetes pro tip.com, and juicebox podcast.com. As a matter of fact, if you join the private Facebook group Juicebox Podcast, type one diabetes, and go up to the top to the featured tab, there's lists of all the different series for you to look at. And use and keep for yourself if you like.

This episode of The Juicebox Podcast is sponsored by touched by type one, learn more about what they're doing at touched by type one.org, or on their Facebook, and Instagram pages. It's a great organization doing wonderful things for people living with type one diabetes, and they would just like it if you take a moment to find out more about them touched by type one.org. If you'd like to help people living with type one diabetes, and you're a US resident who has type one, or is the caregiver of someone with type one, you can help by taking the brief survey AT T one D exchange.org. Forward slash juicebox. Take you fewer than 10 minutes, it will support people with type one, it will support the podcast. It is very worth your time. I hope you're able to do it t one D exchange.org. Forward slash juicebox.

Preet 2:23
Hi, Scott, thank you so much for having me here. My name is Preet. I am a parent to type one diabetic daughter who was diagnosed last year in middle of COVID. And we are based in India.

Scott Benner 2:41
What's your daughter's name? are we sharing it today?

Preet 2:45
My daughter's name is Noor

Unknown Speaker 2:50
How old is she?

Preet 2:52
So she's seven right now. When she was diagnosed, she was six years old six.

Scott Benner 2:58
Any indication that something like this would be happening? Or did it come out of nowhere?

Preet 3:04
No, actually, so this was this is the first ever case in our family. Overall, we have we had no idea about this. But somehow we could observe some symptoms. So before she we actually thought there's something wrong with her. Since passed too fast. Two months, we could see her she not gaining weight turning skinnier, and she would go to pee frequently drink a lot of water. So she has she has not been someone who really likes to eat a lot. And she would just always be hungry. So that is when we realize that maybe something is not right with her. And we have a normal sugar testing kit at her home because my mom she recently got diagnosed with type two, because of her age and we had that kid so when we when we checked her fasting sugar in the morning, it was 269 and we had to contact her pediatrician and from there on it was like hospital visits admitted to hospital and all

Scott Benner 4:14
it's interesting of all the signs. Her hunger was the one that that kind of made you the most like Ooh, there's something wrong here because she just was never hungry prior to that.

Preet 4:26
Yeah, she was never a foodie. So she would just have basic food and that's it and this time, she would ask us to cook some specific things she would have these bad cravings and when she would eat them she would be like, Wow, this is so tasty yummy. And you know, she would start kissing hands off her grandma. I live with my parents. And she were like wow, you have you have made such a tasty food. So everything was a bit weird, but definitely she was turning skinnier. And she was paying a lot right Shiva started by doing bedwetting in the last few days, I say,

Scott Benner 5:03
Where were you in? Where were you when this happened in India?

Preet 5:08
Yeah. So that's I think that's a big part of this whole story. I was not in India at that time. So I traveled for work. And I was in the North American region at that time, and I was supposed to fly back in March last year. And suddenly, this whole COVID thing happened and all the flight, just flat flights got stopped totally. And I couldn't fly in. And at that time, it was like, okay, the situation is really bad. And it will improve in a month or so. So let me fly back. Let me come back then. And this sort of stretched till July. So she was diagnosed in July, and I sort of felt all of this then I used to spend time on video calls with her. So she would drink water, and then she would go to pee, she would eat in front of me. And that's why I asked my parents that there's something wrong with her. And it's not normal. And apparently, just a day before. And it was such a sheer coincidence. I was watching a documentary of Nick Jonas. And they're exactly they highlighted the symptoms after which he was diagnosed with type one. And I was like, this is exactly what Nora is going through. So I asked my parents to just check her sugar level when she wakes up in the morning next day, this all happened while I was sitting here, and totally helpless, totally restless, couldn't do anything.

Scott Benner 6:38
No kidding. For. So How long had you been away from her when you started realizing what was happening?

Preet 6:46
So I was away for her? Three, three to four months. And that is when we realized that something is wrong.

Scott Benner 6:56
Is that your average travel time for work? Or was this because of COVID? Specifically?

Preet 7:01
Yeah, this happened specifically because of COVID. Otherwise, I'm maximum traveling for two months. And then going back to her

Scott Benner 7:09
does? Did she have COVID? Or Did anyone in the family have it?

Preet 7:15
So that's the thing, so no, to my, my parents were overly cautious because they both are old. And then they had a child to manage all by themselves. So they were very cautious and they didn't contract COVID either of them from from what we know, you know, we never know that we must have and we might have, but after she got detected and you know, in India, when recently when there was second strain, and everyone was dying, that is when everyone in my family contracted COVID.

Scott Benner 7:47
Okay. Your parents have had it since then. or No. COVID Yeah. COVID like in the second kind of wave did they have? Oh, yeah.

Preet 7:59
Yeah. So in second wave, Scott, it. It has been so bad that every Indian they have lost someone who is really close, not someone, many people. So we were literally people were dying. And in middle of that, I came to know that even my parents, my daughter, all of them have been tested positive. So it was very stressful. And again, I was not with them. Yeah,

Scott Benner 8:22
I'm sorry. Are vaccines available there at this point?

Preet 8:28
So yeah, so for COVID My father got fully vaccinated. And my mom, so when they got COVID, they were not vaccinated at that time. But afterwards, my mom and my family, yeah, they all got the vaccine.

Scott Benner 8:50
Wow, that's, that's it must be insanely scary. I mean, I remember the news stories from that moment out of India were horrifying. My daughter has a close friend who has family in India. And that's all they talked about for quite some time. And then on top of that, you're not there.

Preet 9:11
Yeah, it was horrifying. So. So what happened was when she got detected, at that time, we had some evacuation flights from India being sent here. And I tried to jump on the earliest one, but still, I had to wrap things here and the flight which I got was two weeks later. And I went back and but unfortunately, I had to quarantine in a hotel facility there. I couldn't be with my daughter. And she had just got discharged from ICU. She was just out of the hospital and only my parents looking after them in middle of COVID being admitted in the hospital. That was really scary. And I tried to so they had some exemption that you can quarantine at home if there is some emergency but the officials there, they just couldn't understand that type one was serious. And they just considered it like a basic diabetes. And I was just making an excuse to skip the quarantine. But all I wanted was to be in front of my daughter. She just wanted to see me because she was going through all of that. And yeah, she had just been she had been really brave, but she still wanted to see me. That's a natural instinct of a child. No, of

Scott Benner 10:26
course. How did she tolerate COVID? How long did it take it to clear? And what were the impacts were?

Preet 10:32
Yeah, so luckily enough. First of all, I think I was really horrified that she got COVID. Because from what we were hearing, that these people who have any kind of weaker condition, they are hit really hard hit really bad. But somehow it was just like a basic flu for her. And we were still waiting, but but her pediatrician was quick enough to start the right antibiotics and the supplements for her immediately even before we could get the test results back. But yeah, luckily, it was just like a basic clip.

Scott Benner 11:17
What were they using at that time? When you when like, what did they give her?

Preet 11:23
Oh, I don't remember that. Those and biotechs on top of my head. Sorry.

Scott Benner 11:30
No, don't be sorry. That's interested and your parents are okay, as well. Oh,

Preet 11:34
yeah. So, yeah, they are okay. Now my mom has become really weak after this whole thing. She had the biggest and deepest impact. But yeah, the every Darrell Okay, now.

Scott Benner 11:48
Wow, that's okay. That's a big year.

Preet 11:52
That's a big year. And then in middle of that I went there. I took over so my parents were caring. So my father is the primary care for her along with me. So it makes sense I travel. So they started with a proper injection, or giving her insulin, the doctor trained my father. And then they started understanding at that age on how to manage it. And what happens in India, or maybe similar countries, we were never sent to a workshop or an education session. We were just discharged with a chart. If this was the sugar. This is what you have to give. If this was this reading. This is what you have to give without a CGM. And fingerpicking all the time. And it was a nightmare to be honest, it. I can't even imagine how bad it was. My parents couldn't sleep for weeks.

Scott Benner 12:51
Yeah, yeah. So what kind of insulin did they give her?

Preet 12:55
Okay, so since she's on MD eyes, we take two insulin. So the one which is the Basal is basaglar. And fast acting is fast.

Scott Benner 13:07
Okay. Oh, great. And, and so they just send you home with the insulin do you get? You get a meter I imagined, but is there much else after that?

Preet 13:17
No. So there is just this chart. And they will just send you that if this is the reading, just check three times a day. And if this is the reading, this is what you do. And after that it's all catch up game my parents trying to call Doctor all the time. Sometimes the doctor would answer sometimes the doctor is busy at night. She's studying 300. But they have already given what they were supposed to give. Now they have no idea what to do doctor won't pick up the call. It was really, really bad.

Scott Benner 13:46
Yeah, the I know, I actually know from the podcast, because the people contacting me that Indian food can be really difficult to Bolus for as well. So on top of all that classic foods that you're eating every day are are not easy is that you're finding as well.

Preet 14:04
So basically, when she was admitted in the hospital, she was served like a proper Indian meal. So we couldn't we couldn't see any difference that since she has been diagnosed her diet has been changed. So what the first thing which doctor told us before discharging her voice, just make sure you are giving her sufficient food. Don't try to change her diet. We have to manage it with what she had. I mean, what what is our regular food? But yes, it is it is difficult to decide the right doors with Indian meals. But since now it has been some time a while we have sort of figured it out. And again, my daughter since she is not a foodie foodie, she has a very good portion control. So if it's portion control, it still it's still better.

Scott Benner 14:59
Okay, that's That's great. And so her her eating habits went back to where they were before her diagnosis.

Preet 15:06
Okay, so yeah with normal food attends but since she like, like a crazy person who has never eaten in days if she gets street food and those kinds of things burger and all she would just eat like so initially she didn't crave with all these things so we had not been even going a lot to McDonald's and because she stays with my parents, right so my parents do not eat all of that. So her eating habits were very healthy, home cooked fresh food. And now since she diagnosed this, she craves to eat these things more but with the normal food her her diet is normal back to what it was before

Scott Benner 15:43
you guys aren't vegetarians.

Preet 15:45
No, we are not vegetarians, but we in India generally non vegetarians do not cook non vegetarian every day. So it's like once but now since she has been diagnosed what we have found out making a chicken curry doesn't spike her so a chicken curry with the normal, you know roti, which is which you call as non bread of a throaty, doesn't spike her and we can Bolus her well.

Scott Benner 16:12
So you've learned a lot in a short amount of time to see you. You have more technology now than what they started with.

Take a moment to go to touched by type one.org To see what they're all about. Simply speaking, their mission is to elevate awareness of type one diabetes, raise funds to find a cure and inspire those with diabetes to thrive. They have wonderful programs and services for people with type one. And they put on an amazing conference, which is going to be back this year. And I'm going to speak at it. Check them out at touched by type one.org. I don't think you can get tickets to the conference yet, but it's coming. Check out their programs tabs, find out about their awareness campaign there Bofur cause their dance program dancing for diabetes, the D box they just put on a beautiful golf outing. And of course that annual conference is coming up sometime this summer in 2022. I'm going to be doing the talky talking again, take that COVID I'm getting on a plane touched by type one.org. You can also find them on Facebook, and Instagram. I'd also like to remind you to go to T one D exchange.org. Forward slash juice box join the registry fill out the survey, the whole thing takes fewer than 10 minutes, you'll be doing a great service for people with type one diabetes, and you'll be supporting the Juicebox Podcast, it really only does take a few minutes. The questions are incredibly easy. The whole thing is HIPAA compliant. It's absolutely anonymous. And it may lead to opportunities for you to do other things. If you want other things, you know, in the world of let me think of an example know somebody from the podcast once got to be in a trial for Dexcom adhesives, they Versa thing they got paid for. That could happen to you. You never know he won the exchange.org forward slash juicebox. And if you don't want to do other stuff you don't have to doing the survey is doing a lot. A couple last things. Don't forget to check out the private Facebook group Juicebox Podcast type one diabetes. And if you're listening to the show, when a podcast app, please follow and subscribe. Apple podcast app asks you to follow I think in other apps, they may say subscribe, but whether it's follow or subscribe, please do that in the app you're listening in. It helps the show a great deal. And if you're not listening in an app, it's how the kids do it. If you need apps, they should be free. And you can find a bunch of them at the top of juicebox podcast.com If you're having trouble locating them if you're listening on line or something like that, but you should be able to listen to Apple Music, Spotify, all kinds of places anywhere you get audio. Alright, we're gonna get back to Preet. Now. Thanks for listening to all of this little chit chat and for supporting the sponsors. There are links in the shownotes of your podcast player and links at juicebox podcast.com. To touch by type one and all the sponsors

Preet 19:29
Okay, yeah, so that's, that's yeah. So that that's the part of the progression. So we were discharged with these injection needles, and then fee has been basically our bottles. And my mom real my mom just remembered that she said my mom, she has been a teacher throughout her life. At that time, she was not working because of COVID but she remembered she recalled she had one of her colleagues who used to talk about her Her son having type one, and she immediately contacted with her. And to be honest, Scott, she has been our Savior. During that time when we were totally clueless on what we have been thrown into and just a chart and doctor not picking up your call. And she asked us to switch to MDI, first of all, then the normal needle, seven injection, and the switch to the MDI. And then we could call her day or night and she was like, I was in the same situation when my son got diagnosed, just call me any time, so we would call her at 3am. At night, we would call her at four, five, she would call back to check. And she was the one who was guiding us through through this.

Scott Benner 20:49
That's excellent. That's really lucky, actually, to find somebody like that. We were

Preet 20:53
absolutely lucky. She was a godsend. And even till today, we can't thank her enough for that. I'm sorry,

Scott Benner 21:03
this is your hotel on fire.

Preet 21:13
No idea to do it today.

Scott Benner 21:16
Don't worry about oh, my gosh, kind of funny. I haven't had one of these before. You know, I was just looking during that little break. And India is for downloads for the podcast in that region of the world. India has more downloads than any other country. Oh my gosh, really? Yeah. In that in that region, like in China. Saudi Arabia, Saudi Arabia is pretty close to India. But in all that Turkey, Iran all that place where people still listen to the show, oddly, Thailand. But India's Got the most downloads of all those places. So yeah, yeah, I

Preet 21:59
think it's also because of the bandwidth. So I download all your podcasts when I'm connected to my Wi Fi. And when I used to walk, or run, I used to just listen to them,

Scott Benner 22:11
or you're taking credit for most of them. You're saying there's more than you think.

Preet 22:16
I'm so glad because I had been promoting them. So how I got introduced to the podcast, I had no idea, anything like that existed. And I was just looking for to join any Facebook group feeling totally helpless to do and then I came across this diabetes support in their group. I joined that and someone in the comments mentioned about this podcast. Oh, wow. That's I just immediately jumped on. And then from there, it was like back to back listening to the podcast, and we could figure it out a lot. And you know how to be bold with insulin has really helped us with Indian diet and a growing child, to be honest, that has been a savior for us.

Scott Benner 22:58
It's it's amazing to me, I mean, just as I'm sitting here looking at this map, and I can kind of run my run my mouse over, you know, every individual country to see the downloads in places I just never imagined anybody would ever find out about it. It's yeah.

Preet 23:17
I mean, when I started listening to your podcast to talk about sand CGM sand Dexcom. And I used to feel like an alien that, you know, I'm living in a primitive world. And we have a world which has totally moved on. And we are not using any of that for our kids.

Scott Benner 23:41
Please, hold on one second since the alarm went off last time your voice modulated weird through the microphone. I want to see if Jews just stopping talking for a second. We'll bring it back. So it did. So you're saying you don't. So what technology do you have right now?

Preet 23:58
So what happened was that then I started listening to your podcast.

Scott Benner 24:04
Oh, that's so funny. We can hold on a second. Let it wait. It's nice. Nine o'clock

Preet 24:20
in the morning. Maybe they can I had no idea that it didn't do that before suddenly to decide to do it. You

Scott Benner 24:24
would think the middle of the day would be a better time but whatever. Yeah. Yeah, go ahead, please.

Preet 24:31
Yeah, so what I was saying was that when I used to hear and listen to you, CGM, talking about pumps used to talk a lot but Dexcom and I had no idea what is just XCOM. I started reading about it. And then I realized that the CGM is a continuous glucose monitoring device and which can make our lives really easier because I used to I used to be so anxious with Nora that I would just pick her literally sometimes every hour. She's playing. And so before that, I just want to highlight one thing. So what happened? Within a week when she got discharged, she started honeymooning, she went into her honeymoon period. And we had this doctor who had given a chart, that very high insulin doses, and then she would start getting low. And that is when we realized and that our friend told us, that being more is at worse risk than the high. And just don't let her do that. Sorry, no

Scott Benner 26:00
wonder you're fine. So So you started thinking, Okay, well, if we're gonna, if we're going to pick one, we're going to pick higher than lower.

Preet 26:09
Yeah, so one thing was doctor said that as soon as she hits 90, or 80, just mix, so we have something called commercial glucose powder, which comes in the market. So just keep that mix it in water and give her three tablespoons of that anytime she had stat. So what I used to see was when I landed, I found that as soon as she would be ad, my birth parents will just panic, as if she was going to faint, and they would make so much of glucose and give her and she will go really high. Yeah. It was a very bad panic situation that her brain is not receiving signals. That's what they used to say. And she's going to get an and they was they were really scared. Yeah. And so what happened was, so she went honeymooning. And as a result, I had to pick her multiple times, because she would just easily touch 50 In an hour. It was really bad. It was a nightmare. And she was a very active kid. We have just given her something while playing and she is totally asymptomatic when she is low. She has no idea she has gone low and I would be sitting there while she's playing Call her wash her hands precut. So that was a routine and whole night also, we used to do like that just because she had started honeymooning.

Scott Benner 27:42
How old are your parents.

Preet 27:44
So my parents are around 65 and 70. And they had been doing all this like going back and forth ICU staying with her getting trained on this and managing all this all by themselves and learning all this all by themselves and then reaching out to people to understand how to manage it. And then when I landed, I just I just tried to understand this better so that we can make our lives easier because it was not at all sustainable. It was so stressful for all of us. And then I came across your podcast, and I came across CGM. Now, apparently, by that time, we were part of an NGO who were providing some education and some education around type one diabetes. So we were part of that Whatsapp group. Again, they were not the educators were not very easily accessible. But in the group, you could get some suggestion. So when I asked about CGM with the parents whose code whose kids were already diagnosis few years, the educators had their kids who had been diagnosed in 16 years. None of them recommended me to use a CGM. They were anti technology that something which is always touching your skin, it is not good. Many things and at that time, we just have one version of FreeStyle Libre, which was a beta reader and it would just show us graphs. Right. And we didn't have that the Flash version in which I could get the images reading at the same time. And whomever I asked they all were saying that this can lead to infection this can do that this can do that. But I took a decision after listening to the podcast that you know what everyone there is using this and if this is available, I will give it a shot even if I have to throw it later on. I really want to try this and luckily in November so she was diagnosed in end of July and then November they launched the latest I mean the upgraded version of FreeStyle Libre which came with the reader and I could get the real time reading and I just said I wanted this. So we just went and we purchased this now. Now, now, I realize that the reason people are not very open to adopting technology there because there is no concept of medical insurance which covers everything for the people in India, so nothing is covered. No insulin cost is covered. No, CGM is covered pump is of course not covered. So, everything we are paying out of pocket and everyone cannot afford it. So, just to give you an example, and I tried to convert it in USD for you, and the listeners is that I'm we are spending close to 132 USD every month just for the CGM.

Scott Benner 31:07
Okay. Alright, and $32 is $132

Preet 31:10
US dollars. Yeah.

Scott Benner 31:13
Can you give some perspective on what percentage of someone's income on average would that be?

Preet 31:23
Okay, so, so this is close to 10,000 Indian rupees. Okay. And in India, generally, an average household income is close to 15,000 a month. Yeah, a month. And this is 10,000 a month, which we have to spend. Yeah. And even if you're earning close to 30,000, people don't prefer spending money on this. Because just to monitor it. Real time, so even people who are earning a bit, okay, I've seen them going on holidays and spending money but not spending on this. So there is a huge cost and pricing concern. And that has I think made them anti technology. Yeah,

Scott Benner 32:17
I think they're anti spending money, more than anything. Maybe that also some of those, some of those excuses might be because they they're maybe trying to feel better about their decision not to buy it. I would

Preet 32:30
everyone be motivated me, or they talked about skin infection. They talked about something always inside my daughter's body. So no one encouraged encouraged me to be honest, other than the podcast. So I just listened to podcast. And you know, it was so funny. And it's really hilarious. So when you talk about, so I didn't know that there were multiple vendors and in the CGM market, and I would always see that there is this. I mean, in India, we are seeing this round, how come it's a different shape in us. And I would always see why are the type one varying something which is offered different shape, then I realized that that was Dexcom, which is a different shape. And we have a FreeStyle Libre. So not just that. So we had so we started using FreeStyle Libre. And that was a game changer for us. I bet all together a game changer.

Scott Benner 33:33
Pretty soon the Dexcom seven will be out and it it's gonna have a much different shape. We'll be flatter and sort around, like I forget if it's maybe like the size of a quarter, or something much smaller. So the next version is going to look different again. That's really astonishing. You guys can't get Dexcom in India, right?

Preet 33:54
We can't get Dexcom even even we do not have the advanced versions of freestyle. So what happened recently, I ordered a device called meow meow, which can be attached to FreeStyle Libre to make it a glucose information transmitter.

Scott Benner 34:11
Oh, wow. It's like a third party thing. It's not it's a third party

Preet 34:15
thing and it is around 200 USD, I had to get it imported from Europe and there was an AQL and import duty cost and that's another problem with all these devices is there is no subsidy from the government. Nothing is manufactured in India and we have to pay for all of this in the full price of what it is manufactured and sold in other developed countries and then on the phone. I guided and train my father how to activate it. And then we attached it because right now when so now, my daughter she has become a bit independent she takes her small bag with all her supplies, her glucose tablets are read on mobile phone while she's playing in the neighborhood. So my parents, they had to go all the time they used they used to feel so anxious. And now they just call her and she's trained enough, she knows that if she's the slower, she will eat the she will have one tablet, if she is this low, she has to come home. So she is very smart that way. But now that this device at home itself, they will come to know what is she going through and how our sugar levels

Scott Benner 35:29
amazing Good for her. That's really great. And and your parents need some sort of a break. They can't be, especially when you're older. You can't be that nervous and anxious constantly. It's just not

Preet 35:40
obviously I'm I can I mean, I just cannot imagine what they had been going through. And they're they're still because still she's on MDI. So the idea was, the second level of grade was to switch her to insulin pump. So the only insulin pump which we have in India is maytronics. And that is close to 5000 USD, which is equivalent to a car cost in India. Wow. And because of the pandemic, because we need special training for all of that, we couldn't get it immediately. And so that's my plan that once I'm there, I'll switch her to Pam. And I think that will make our lives even more easier from what I hear from the podcast, especially if you have a growing child with growing needs.

Scott Benner 36:29
How? How much of your willingness to take risks like this are big do you think because you traveled to North America? Do other people not get out of India as frequently as you do? Like, yeah, so

Preet 36:44
my job in terms of traveling and consulting is about differential. First of all, I'm a single parent. So my situation is a bit different. I live with my parents, maybe if they're there is a couple one person is not traveling that much than the other person. And it was not just North America, I used to travel globally. And my child was totally healthy. We had everything sorted out her school was nearby, there was never a problem as such, it's this whole this whole pandemic situation with her beating getting diagnosed. We have to I have to reset everything and reset my priorities and what I really have to do and how I should be doing. Yeah, so I'm still thinking and contemplating on on how to make it work.

Scott Benner 37:33
That's really impressive. A lot of people get faced with the same thing you have, and it's hard for them to, to, you know, read, re order their priorities and make decisions. I just did the online just to have like some concept of the money you were talking about a second ago. And you said that a pump is equivalent to a car cost. And you said, you know, 5000 US dollars? It's 376,000 Indian rupees. That's

Preet 38:03
yeah, so we call it three lakhs of 70,000. So it's that much yes, in Indian rupees. And that's the cost of pump plus the recurring cost of the patches. So only very rich and elite people. They use a bomb in India,

Scott Benner 38:21
our cars in free, or cars, not something everyone has as well.

Preet 38:26
No, everyone doesn't have a car.

Scott Benner 38:29
Okay. Wow. That's amazing. I, it's just very interesting to hear the same story from a different location, dude. I mean, like, because your story is the same as everyone else's about Yeah, about being diagnosed and the fear and concern and the learning curve and all that stuff. But then you add these different impactors. And it just seems so much. Yeah,

Preet 38:54
I mean, it just makes it worse, you know, so it was not just so so our journey was so every type one family, they have a type one story and a type one journey, which I think just carries on right. But it was for us, it was not just mentally accepting it. It was about dealing with all this and we are still doing that. So for example, majority of schools do not have a medical room, they do not have a nurse, the moment they'll come to note that the child is a type one, they won't admit your child or they would make you sign an undertaking. If something happens to the child. It's not their responsibility. People don't know about type one. So they often ask or in publicly event teachers they are not trained and they would say why you didn't do exercise properly. Why did you do eat so much of sweet? That is why you got type one and then the diabetes, the diabetics, the diabetes educators, I don't know somehow The doctors do not like to work with them. So there was when we got discharged, if the doctor didn't have time, they could have easily recommended us, like they were these NGOs, who offer education and connect us to someone, they don't do that. So these NGOs, they work undercover, they do not work publicly, you know, so that the doctors, they do not buy caught them altogether. And then we have these insurance companies, which are not covering us, then we have government applying a lot of import tax on all of this, nothing locally manufactured, I mean, I can't even tell you like fiasco, it's an international insulin, and we are paying a lot for that. And that's why people, they don't give full quantity of insulin as well, those who cannot afford that much of money. So there are a lot more struggles than just me thinking about how best I can manage nor there are a lot more things which we have to constantly think and struggle and that makes it really worse

Scott Benner 41:05
course. Do you have interesting, you may have absolutely none. But do you ever consider leaving India moving your family? Would your job allow that or is your job based in India?

Preet 41:18
Okay, so, um, I have been traveling. So before that, I was so when moved was a baby, I was in UK with Nora. And since I was single, and it required travel, I just thought it was intentional for me to be with my parents and be there and things were really good, because if you have some help from your own people, I have my sister and brother in law, by the way, also in India, who are married and they they all they are within India, but not in locally to us in India. So they are also have good extreme health when we want. So I had a better support system. And that is why I did make all of that decision. Now, like I said that, first of all, I was not prepared for this pandemic. Second, I was not prepared for news condition. Now, I have to reset everything, I have to consider a lot of things. And what I feel is, let me not make a decision in hurry immediately just because the situation is not as it was supposed to be, and maybe it will get better. But when I come to these countries, and I see insurances fully covering everything, to be honest, now that she is type one, I feel living as a single parent with daughter in such countries will be much better.

Scott Benner 42:42
No, I I imagined you might be thinking about that. And to be honest, I I know it's a hopeful idea that you could go find a better situation. But I also find it sad that you'd have to leave your home and your family just because yeah, these things are available in other places. That's

Preet 43:01
exactly. So it's about what to choose, shall I choose a better environment where Nora is always busy with her loved ones? Or shall I choose somewhere where I'm not taking? They're not worrying about the expenses or any other thing? But then she doesn't have all of them? So yeah, what is better for her and me that is something which I have to decide.

Scott Benner 43:26
That would be a big decision either way. I was researching a little bit before you came on and about the prevalence of type two diabetes in India, when you mentioned that your mom had it. It's much more common in urban populations than it is in Indian rural populations. But how is it managed? Because if there's such a misunderstanding of type one, the way you described, I wonder, I wonder how they like How was your mother managing? What do they tell her to do?

Preet 43:57
Yeah, so luckily, her is not really bad, because so she just takes one pill every day. And she's way under control. So much. Yeah, in India these days, older people getting tired. Type Two is very common within the urban population primarily because of high stress levels. And she walks regularly and it's very easy. You know how easy it is to manage type two, but they often confuse type one also with type two. That that's the thing. So my for my for my mother managing is really easy, because it's not really bad. We diagnosed it quite early and with lifestyle changes. It's all under control. Gotcha. Yeah, it was. It was only during when she was in ICU with Nora and they were going through all this stress, it became worse. And during COVID Also when she had COVID Her sugar levels

Scott Benner 44:56
that she hasn't changed her. There's no real way for her to change her. diet, your mother is that right?

Preet 45:02
So just to let you know that if the basic Indian diet is very healthy if you eat it balanced, so there is a bowl of lentil curry, which is protein, then we have a mixture of vegetables that makes half of your plate, then we have yogurt, then we have a lot of salad. And then the main content would be roti, which is like pure carbs. And if you just eat like one or two, it's the Indian meal is very healthy. And it is so if it's all about portion control, and so we don't make any diet changes for sure. And we manage it with that because we will anyways not into heavy eating, eating fried food that is not regular Indian meal. So my parents used to always eat very healthy freshly cooked meal and sordid mode all the time.

Scott Benner 45:58
Gotcha. Oh, that's excellent. Oh, good. That's, I'm enjoying learning about this. My My only understanding of India is through my, my my my daughter's friend who just comes home once a year and she says MR. BENNER, I fit in the hole this week. And that's, that's pretty much my whole my whole. She She always talks about going home to her her grandparents. And okay, and she's like, I had to go to the bathroom in a hole. And I'm like, oh, like, Okay. And so I have no, like, I can't picture your living condition. I can't picture your cities, like in my mind to Kelly, my wife has been once to for work, but like, I just don't I don't have enough of and I imagine a lot of people listening don't have a lot of context for it as well.

Preet 46:43
Yeah, yeah, no, no. It's pretty modernized. In terms of the lifestyle and the way we live. But when we have to deal generally beyond just the lifestyle and living, then there are a lot of gaps, which are the ones which are highlighted to you.

Scott Benner 47:00
Yeah. And there's a is there a fairly big disparity in education as well? Like, is it is it a very half and half not society? Like, do you are you either doing well, or you're not? Is there no, like middle class? Or is that no, no,

Preet 47:15
actually, in India, the majority is middle class. Class is the biggest okay. So they are the high taxpaying class. So that is the biggest class in India,

Scott Benner 47:27
I say, I say, what kind of work is available for people, and there's no medical insurance available through jobs or through government? Is that right?

Preet 47:38
Yeah. So there is a basic medical insurance, but that's more for those who are poor, there is a public health system, but people end up going to private hospital more, because the public health system is not very good. So they have something in place, which is generally used by people who are poor, because the facilities are not that great.

Scott Benner 48:02
I say, okay, so So the government has something in place, generally used by the poor class, and then people who can afford it go to private institutions and private hospitals, things like that. That's correct. Yeah. Yeah. But you're always paying for your medications. In counties

Preet 48:19
these days, it's the medical insurance there only covers the hospitalization charge if it is more than 24 hours.

Scott Benner 48:26
Okay. All right. Yeah. Interesting. That is

Preet 48:30
what medical insurance means there. And there's

Scott Benner 48:33
no private insurance, like there's nothing that you could buy on top of all this to help you.

Preet 48:40
So all this medical insurance is a private medical insurance plus or a corporate medical insurance. So it's not a government medical insurance I'm talking about so we have to take and I'm paying a premium for that. And then if you need to there is there are a few companies who have come with a type plan in which they would only cover the hospitalization because the medical insurance they would wouldn't even cover hospitalization for pre existing conditions if slot for a type one patient. But again, they don't cover everything and everything is like a private everything is private insurance, then there's government insurance is generally used for those who are

Scott Benner 49:19
poor. I see. What what do people people who can't afford insulin? Do they just do they just the eyes like what is the what happens to them?

Preet 49:33
Sorry, sorry, what's the question

Scott Benner 49:34
when when someone just can't afford insulin? What path is there for them to?

Preet 49:40
Oh, yes. So yes, so they do insulin rationing? First of all, many of them don't even so if you're talking about really poor people. I don't type and I've never seen an urban population. I'm not really sure. Why is that um, So they will. So the moment it gets diagnosed, they do insulin rationing, so that that means their lifespan reduces because their sugars are not well under control. But we do not have a lot of research and study on the lifespan of Indians with type one diabetes. We recently had a report published with a sample of 40 people. And I think those people managed it well, that is why they could live so long. They still do not have any data for those who cannot manage it. Well, all I know is they do insulin rationing. They rely on NGOs, they rely on public health system to get some subsidized insulin and things like that. So I really feel like doing something and working towards that, that at least every child now, since we started using CGM, I started feeling it was so cruel of me talking and fingerpicking node all the time, I used to feel so bad her fingers used to get swollen by the end of the day. So many times we used to break and I wish I can provide a CGM for any child who is diagnosed. I know as we grow big, we have a better control and we can manage even with the picking and meds. I know Jenny does an MDI herself. So as we grow, we have a better control. But for kids, it is really and the parents, not having a CGM is is like, you know, walking in a dark room and having no idea what's going on.

Scott Benner 51:28
I understand what you're saying. Well, that's a it's a powerful feeling to know know how hard it is, and then be helped by it. And then look over and see all those other people who don't have that stuff. It's I know how overwhelming that can feel. Do you feel lucky? Do you feel guilty at all?

Preet 51:46
I feel lucky. First of all, it's just not that I could afford it. I could take a chance because everyone was saying this technology is really bad. So I'm, I'm really lucky that I could do it. I'm really lucky, I can afford it. But at the same time, I sort of feel it is my responsibility to educate people more about CGM in India, which I do a lot. But I really wish if I can sponsor it as well, for especially very young kids under five who get diagnosed. It's it's really it's really very harsh.

Scott Benner 52:21
How is Nora doing? Does she know anybody who has type one or she the only one?

Preet 52:27
Oh, so she didn't know anyone when she was Typhon. So what happened was no. You know, these young kids, they are so resilient, so brave. So when she was taken to the ICU, she was packing all her soft toys. So it was like a holiday in middle of pandemic for her. She had no idea what was going on. I couldn't I was here I was really scared on how should I even face her. She's an ICU, she there must be so many things attached to her and that I called her she was eating her meal because she was always very hungry. And she was saying, you know, Mom, this meal is just like a restaurant. It's so tasty. I love this place. And you don't worry. You don't have to come all the way I'm really fine. You don't have to come we have managing it well. And she would ask her grandparents to leave as well, that she would stay here by herself. So she has been really brave throughout. But what we realized is that this whole insulin and all that is a high profit making game for the medical companies, pharma pharma companies out there. So as soon as we got discharged, we started roost, my parents started receiving phones from all these agents who wanted to offer us fiasco and basaglar at different discount rates. Okay. And these phones were continuous. And then when we wanted to switch to MDI, I don't know how the agents came to know so many came home. And they were like, We don't have time. I mean, these people don't have empathy. Right? They they are just salespeople. Yeah. So what they did by the move was great, what they did they literally pinned down nor to teach my parents how to give them their the pinto down. So many people, they held her. She was screaming, leave me Leave me. And they just did it. And my parents were like, What the hell is happening. And after that, she really went in trauma for a few days. She had not seen anyone with type one. She had no idea why this was happening to her. But then, so every time we would give her MTI my parents had to struggle they had to hold her before that she were taking she was taking like a proper injection all the time and she was totally okay with that. And then we had to connect her to my mother's colleagues, son who would show see see nothing is happening but she would Don't listen to anyone. And then but so gradually she came out of the drawn line, it was very, very difficult for all of us. So I was not there and I was requesting begging them to at least let me quarantine at home. If he will see me I'm there, she'll start taking meds. But they just wouldn't understand the authorities there. So I would be on the video call. And then I started looking for YouTube videos and all that. And when I reached her, I started her showing that she is not alone. There are people out there who have see such a small girl has got such a small girl. Then gradually, yeah, she was over. And she was anyways very, very, very brave with this whole situation, just barring that little trauma period. And she in between, she used to ask that, why I have type fun why no one has type one. And then one day, I just I was checking few videos on iPad, and I saw her recording her own video, in which she's showing her CGM. And she's saying I have a superpower. And this is my superpower. And I am living on MD eyes and she just made a video of her own. And I was so inspired to see that amazing.

Scott Benner 56:17
That's really wonderful. She's resilient is a there's not enough of a word for her.

Preet 56:24
Yeah, I mean, we have been very lucky with her managing all this hate

Scott Benner 56:28
the between like the sales pressure and the being pinned down to get injections is a lack of compassion. Is that a cultural issue?

Preet 56:39
So I think there is a training issue. These salesmen are not trained to be compassionate they are they're not selling pens, or you know, any other electronic device they are selling, which is a medical gadget, something related to someone's condition, they don't have empathy at all. I think there is a huge training, training issue training gap. And then my mother complained about them to the area manager. He really apologized for it afterwards. But they there was a lot of pressure on the salespeople to meet their targets, I think. So it's lack of training, meeting targets. And yes, there is some cultural cause some culture as well, because if you see policy policy or the government officials, they are not they're also not trained enough to be more compassionate towards people

Scott Benner 57:33
and even just general understanding because you know, about a half an hour ago, you said that even doctor said like what did you do to her like you gave her Why did you give her so many sweets? How did she get this like that? That's a real misunderstanding of type one,

Preet 57:46
not the doctors, the teachers and normal people and doctors definitely understand. But yeah, but but the regular the teachers and the normal people. That's a very common question for no wrenches. She knows how to answer that.

Scott Benner 58:02
For her. She's really, really something else. And now she's just seven years old still and only been at this for a year.

Preet 58:08
Yeah, she has been seven year old. She has been out and she is managing she sometimes she's scared mama, what will happen when the school will reopen? I don't know how to do all this, then we tell her that don't worry, we'll be there with you. So she has something going at back of her mind. But now she's managing she knows what gives us gives her spike. So sometimes if she's eating something, she would say, Are you sure we have Bolus Jennifer this or shall I just stop eating now? So she's like that? And yeah, she she's she's managing it really well, at her level

Scott Benner 58:44
thinking about it at a higher level too. That's excellent. How long is the school been? Like? She's Are they are they going to school remotely? Because of COVID? Or?

Preet 58:54
Yeah, so how her school has been virtual since one year. And that continues for now. But if the situation improves, they will start reopening it. So we have no idea when they will open it. So right now she's on virtual schooling. And by the way, when she was in ICU, she used to attend all her classes from there as well. And she would educate everyone that I had been. We had no idea that she was listening to all the conversation we never told her. And then she would say, you know, ma'am, I'm an ICU. I've been detected with type one diabetes. And then she would show man I want to say some things. This is my CGM. This is how it works. She would keep everything with her. Just to educate everyone.

Scott Benner 59:41
It's great. That's really something she's really special. I I don't know my kids were six years old. I don't think they could have done that. That's

Preet 59:49
exciting. Suddenly, I don't feel I don't know. Suddenly she has become so mature for her age. I mean, I can feel so much of difference. She is understanding things on her own. She is no more that small baby you know before whom she was before just think that just playing playing playing not even eating properly

Scott Benner 1:00:08
right has she has her body responded to the insulin she's not thin any longer.

Preet 1:00:12
Yeah, so she's not cow she was before. Yeah, yeah, but she was overall she has been like her her own. I mean she's not a what you call it up? She doesn't have a lot of fat so she's quite athletic. But she's not skinny skinny how she was before?

Scott Benner 1:00:30
How does how does? How does management work for diabetes like here? Once you have type one you see an endocrinologist every three months, they start checking things like celiac and thyroid issues and is all that happening for her.

Preet 1:00:44
Yeah, so we are doing that now. Since everything is private. You have to pay for everything. It is not mandated. But we do for note many parents don't do it. We are regularly doing it for note every three months. Yes. And again. That is like that is expensive. But we are doing it.

Scott Benner 1:01:04
Do you know what he wants? He is

Preet 1:01:06
so recent even see was 6.1

Scott Benner 1:01:11
Wow, that's really great. It's amazing. Is she and she that's a combination of her. Your parents? Sometimes you do you help her win remotely with diabetes? Or do they handle it all locally? Like you're you're not home right now. For example? Yeah,

Preet 1:01:27
to be honest, it's all my dad. He is like he just makes sure she's not spiking or she's not going under all the time. I mean, it's teamwork with dad and me but I so whenever i i Keep on researching a lot. I listen to this podcast, and I do a lot of so whenever I learned something, I sort of educate them and then together we decide how they should be bolusing like when when they're eating something fried and how to Bolus for fat as well, which is in food. So those things I keep on educating and by the way, it has been one year and she's still honeymooning.

Scott Benner 1:02:01
Oh, still, yeah, yeah. What? How much Basal insulin does she get a day?

Preet 1:02:07
So her Basal insulin, I'm not sure. If I mentioned I'm telling it in the right unit, but she uses MDI, so her Basal unit is five units.

Scott Benner 1:02:18
Five units a day. Yeah, yeah. What does she wait, you know? Sorry. How much does she weigh?

Preet 1:02:24
Oh, yeah. So she is 23 kgs.

Scott Benner 1:02:29
I'm just doing my real quick. Okay, in pounds and pounds translate. It's about 50 pounds. 23 kilograms. Okay. And she's using five a day. So. So if she was on a pump, her Basal rate might be around point two. Yeah, yeah, she's she's definitely honeymooning still, huh.

Preet 1:02:49
Yeah. And the bonus, the bonus, which we give obviously depends on what she is eating. But for a normal diet. It's just two units of Yes.

Scott Benner 1:02:59
Okay. Yeah, she's used that a little bit still. That's a Well, that's good. It's nice for her to get a chance to. And your father? Is your father ready for the idea that when the honeymoon ends, the amount of insulin will increase?

Preet 1:03:13
Yeah, we all know that. And sometimes, maybe she has got some allergy or something. And suddenly, we have to give some more and we are like, Oh my God, it seems like this is ending. Honeymoon is ending. We all know that. This is going to end someday. But we really want this to continue and stretch for as much as it can't work

Scott Benner 1:03:32
out. Well for you right now. For certain. Yeah, no. any brothers or sisters for Nora?

Preet 1:03:38
No. She's She's my when are you tired? Okay.

Scott Benner 1:03:41
Wow. She's gonna Well, you know what, she's probably super, you know, responsible and mature because she's around older people most of the time, right? So she's Yeah, I think she's gonna be like a little 70 year old lady.

Preet 1:03:59
Exactly. She just talks like my mom and dad. So I'm like, I'm living with 370 year olds.

Scott Benner 1:04:08
It's amazing. That's very funny. Oh my gosh, so does she have I mean, I guess she's so young, really. But to talk about like, I Oh, my gosh, how much time has she actually spent may reframe my question. How much time has she actually spent in school before COVID hit and knocked her out? She must not live in been there for very long.

Preet 1:04:33
No, so she just finished her. I think three school and she was about to go to the proper school. And since then we have COVID

Scott Benner 1:04:44
Oh, she's never really gotten to do it at all. No, no, I see. Oh, that's terrible. Do you think there's any sign that they're going back or right now they're not talking about it.

Preet 1:04:54
So they have opened for senior classes I personally feel is since till the It is dangerous, there is no point in opening it for such young kids, because they have not even started rolling vaccination to kids who are 1111 and above and even this vast population who are who are still not vaccinated. So I personally feel that making them vulnerable especially with the strains, which are impacting kids more now should not be done at all till till this is gone. But then there is too much of pressure sometimes from from the parents also. But I So, what happened is they're still anticipating strain three specially after the festival time. So right now, it's festival season in India. And because people get together a lot during this time, and then there will be winters kicking in, they do anticipate a strange reason, at least not this year. But let us see, I really I'm not very comfortable sending her till till we have this thing in place, like getting really worse. And if majority of people are not vaccinated.

Scott Benner 1:06:02
Yeah. Well, that makes sense. And I'm assuming too, this causes a pretty big issue for childcare in general, because their parents were expecting their children to be at school, another home.

Preet 1:06:14
Yeah, I think that is the major problem and why they are pushing across countries, not just in India, to reopen the schools and send them especially as a childcare problem. But But yeah, I think it's so maybe now I'm a parent of type one. So I tend to everyone, I would have never known that this world existed, till node got diagnosed. And this has opened a different world. I have changed as a person, I think differently. So for me, no going to school and being exposed to COVID. All that probability does not make me comfortable.

Scott Benner 1:06:54
Well, Arden has a cold right now. It's not COVID. And I've been fighting with her blood sugar for two weeks. So she know she's 17

Preet 1:07:06
Oh, wow. Yeah, I don't know. I've never met her. But it feels like I know her forever. So I introduced Scott and Arden to Nora and my parents. And they were so happy to know that that there is a father who has dedicated everything just to look after her child. I mean, his child and my father was so inspired. And I think he's just trying to do that.

Scott Benner 1:07:34
That's wonderful. Thank you. I mean so much to me, I you making me feel like squishy inside.

Preet 1:07:43
didn't do that much. Just to take care of that child. I can. I can at least put her put her on CGM.

Scott Benner 1:07:53
Sounds like you guys are doing a really fantastic job. I mean, honestly, that's, I don't I can't see what else you could be doing right now. You know, you just seem like you're doing everything you could be.

Preet 1:08:04
Yeah, I mean, we saw when she got 6.1. My father was happy that I told you know that those people who are on pumps here, they get just a normal human sees, which is in fives like 5.25 5.3. And he was like, really, that means I need to work harder. I didn't work hard enough.

Scott Benner 1:08:22
Given your data job in his later years,

Preet 1:08:25
maybe we actually tried to figure this whole max of Indian food, the boilers, how to make it work with MDI, and the nose craving every weekend craving for something really homemade. But sweet.

Scott Benner 1:08:36
Yeah, that's really great. And you're in the you're in the private Facebook group for the podcast, right? Yeah, yeah. Do you find that helpful?

Preet 1:08:44
Yes, yes. So this these groups when parents discuss their issues, and then in the comments, actually, even the comments are very helpful on how different people are managing it. Those are really helpful.

Scott Benner 1:08:56
Good, good. I'm glad. That's excellent. Well, I really appreciate you coming on and doing this with me. Is there anything that we haven't talked about that you wanted to?

Preet 1:09:05
Oh, gosh, there are so many things, which are never ending with such situations such a diagnose, but I think we have covered too, I really wanted to highlight how things are in countries like India. So it's not just accepting your child has this condition, you have to fight socially, culturally, monetarily. There are many aspects to it. And I think which everyone deserves to know is one thing, which I just fail to understand, Scott, as we all have been advocating insulin for all. And countries like us, all those who are very high on human rights, who talk a lot about human rights. Despite knowing all this, How can everyone be so blindfolded and not make a difference. I mean, I just feel to understand that

Scott Benner 1:10:03
you so why is it not something that people fight about more of the price of insulin?

Preet 1:10:08
No. Why is it not why the price of insulin is still so expensive and why it is not like a regular basic drug available globally worldwide right

Scott Benner 1:10:17
now I am actually, I just scheduled an interview with a gentleman who's trying to bring a law, a federal law to vote about that exact same thing. And I haven't spoken to him yet. I think he's going to be on in about two weeks. So I'm hoping to find out what he's doing. It is really something I think what happens is, is that for a lot of people they have in America, they have private health care insurance. And so the price of insulin to them isn't very great. And so there's, so you have this big path of people, this big swath of people who aren't impacted by the price of insulin, and therefore, it's not a fight that they, I assume that they feel needs to be fought, and they don't see how it impacts the people who don't have that insurance.

Preet 1:11:05
But, but but my thought is why to even fight for it. This is a hormone which is generated inside the body, which is available outside, why don't why doesn't who, who and all these work with these pharmacies, we know these are the pharma companies and the insurance companies, just in few highly developed countries doing it, we know how to solve it, you know, just let it locally manufacture everywhere. Why to still make it like a high profit margin when we have other drugs? Which we can do that? I mean, I still don't understand why do we need to fight for it? That's the thing I just don't understand. I

Scott Benner 1:11:44
agree. That's a would seem like an obvious statement is I mean, yeah, seems like obvious. Yeah. But you asked and answered it in the same pot is people are making money off it. And it's easy to say the pharma companies are making money off it. But there's also in America pharma, pharmacy benefit managers, which are basically like middlemen that make money. I mean, you're talking to UFC salespeople who are trying to push it over there, because they, you know, that person gets a little piece of that money, the company gets a little everybody's getting, everybody has their hand in the, in the pot, taking some out. And you're, you're gonna have to get to a point where, like you said, like, some larger entity steps in. And that's something but I think these incidents are also covered by, you know, patents, you can't just start making it on your own, you'd have

Preet 1:12:32
to, I know that that's the thing. So like, in Canada, it's patent free, right? They, I mean, if Canada can do it, why can't other countries do it? It's just few countries who are impacting this, across the world, people are dying because of this. And we know the cause, like you mentioned all that. We know everything. I mean, why not make it obvious. And you would fly to in fight for it and just do it?

Scott Benner 1:12:56
And you would think to even like, specifically in India, there must be pharmaceutical companies there that could take this up. And I guess it's it's about, I guess, they'd have to be subsidized by the government, like, some people aren't going to just start making a thing if they're not going to get paid for it. So somebody has to step in and say, Look, we'll pay for it, and then we'll give it to people cheaper, like the government would need to do that.

Preet 1:13:19
Yeah, they'd have to be worth their taxes, or middlemen, for sure. I think it needs to be a coordinated effort. But at the first stance, maybe the the countries who are manufacturing this in bulk across, have an ERP and charging a very high patronage for that. I think, once we start from there, it will come down that that's what

Scott Benner 1:13:40
you're gonna have to find. There's going to have to be an entity that's large enough and strong enough and influential enough that has the nerve to just step forward and say, We're gonna fight for this now. And, and hopefully that could happen, but it does. It does seem like it does seem like something that is more of a dream than a reality. But you

Preet 1:14:01
know, yeah, I mean, for for me, in a country like India, educating on CGM where people cannot even afford insulin. So my first step is to make sure a good insulin like fi ASP is available at least. And they're using it in the right portion. They're dosing it right to begin with, even before touching the CGM. Right,

Scott Benner 1:14:23
I agree. Well, I prayed I really appreciate you doing this very much. This was a wonderful way to spend this hour so thank you very much.

Preet 1:14:31
Thank you so much, Scott. And keep on inspiring say my hi to Arden

Scott Benner 1:14:36
Oh, I thank you and and please tell Nora that the guy on the podcast says hello.

Preet 1:14:40
Oh, she will be so happy to say hi to Nora. I'll make her listen.

Scott Benner 1:14:44
Oh, that's excellent. I'm I want to say hi to your father and mother to like, I think what they're doing is really astonishingly brave. Especially

Preet 1:14:53
really good. I think I thought I was thinking was that you know if ever you want to interview a senior primary carer Like, who was about 60s? He can be

Scott Benner 1:15:02
the one he would know, huh? Okay. Thank you very much. Thank you so much, Scott. Have a nice day bye a huge thanks to Preet for coming on the show and sharing her story. I also want to thank touched by type one and remind you to go to touched by type one.org. And to find them on Instagram, and Facebook. Also find my private Facebook group Juicebox Podcast iPhone diabetes. Don't forget the diabetes pro tip episodes are available in Episode 220 where they begin or a diabetes pro tip.com and juicebox podcast.com T one D exchange.org. Forward slash juicebox. Take the survey support the sponsor support the show. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast

#670 Graves and Type 1

Leona's daughter has graves disease and type 1 diabetes.

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COMING SOON

#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

let's first talk about us med you very likely get a lot of diabetes supplies. If you use us med those supplies can come to you automatically without hassle. US med wants you to get better service and better care than you're accustomed to getting now and they think they can do that for you. They have an A plus rating with the Better Business Bureau. They accept Medicare nationwide and over 800 private insurers. US med always provides 90 days worth of supplies and fast free shipping. They carry everything from your insulin pumps and diabetes testing supplies to the latest CGM like libre to index comm G six us med will give you a free benefits check right now if you call or go online. Online us med.com forward slash juice box is where you want to go. But if you like and you prefer to speak with someone on the phone 888-721-1514 You deserve white glove treatment and US med wants to give it to you. Speaking of your diabetes supplies, the Contour Next One blood glucose meter is my absolute favorite in all of the years. And for all the time that my daughter has been using a blood glucose meter. The Contour Next One is my absolute favorite. It isn't just easy to hold and use. It's easy to transport whether that means in your pocket or your diabetes bag or your purse. The test strips they offer Second Chance testing, which just means if you should touch the strip to blood but not complete, like don't get it in there yet. You know what I mean? What happens sometimes, and you come away you can go back to the blood and get what you need without ruining the strip or the quality of the test. And speaking of the quality of the test, the Contour Next One blood glucose meter is super accurate. It is the most accurate meter I've ever used. It's an actual pleasure to deal with. I just used it last night in the middle of the night in the dark. My old eyes could see This screen no problem, I could see the blood drop, no problem how with the bright light that's on the Contour. Next One blood glucose meter, this meter absolutely rocks, you can go to contour next one.com Ford slash juicebox. To learn more. And actually, when you're there, you could just buy it. Let me say this contour, I'm gonna type it in contour next.com forward slash juice, I can't see the keyboard. My typing skills are not enough that I can have to look down a little bit I'm embarrassed, but what are you gonna do and the microphones right my face. Anyway, this is more than you needed to know, when you get there, you can learn all about the Contour. Next One blood glucose meter, it's actually a terrific site. It has a ton of information on it. But one of the things the site has is off to the right side is a kind of an orange yellow like flag with his bio online, click there right now and choose any number of online retailers. As an example, Amazon, if I click on it takes you right to Amazon. You can buy whatever you want. The price is lovely. You're gonna see, my goodness, is that how much it costs? Get out of here. That's insane. have paid more than that for a cheeseburger. That's crazy. All right, contour next one.com forward slash juicebox. There are links to the sponsors and all of the sponsors in the show notes of your podcast player, and at juicebox podcast.com. When you support the sponsors, you're supporting the show.

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.