#1818 Windy City Independence - Part 1
Scott shares his Facebook group moderation philosophy before Lindsey discusses her type 1 diagnosis at 14, how body image masked her severe weight loss, and her early diabetes burnout.
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Key Takeaways
- Diagnosis Symptoms Can Be Deceiving: Lindsey's initial severe weight loss and thirst at age 14 were masked by a desire to be thinner, highlighting how easily classic Type 1 symptoms can be misunderstood by both the patient and their community.
- The Importance of Early Context: The first 24 to 36 hours post-diagnosis are critical. Lack of proper context or reassurance about what life with Type 1 looks like can cause immense, unnecessary anxiety for the patient and their family.
- Burnout Often Follows the Desire for Independence: Taking on too much diabetes management too quickly (especially as a teen trying to prove independence) can quickly lead to burnout and frustration with the disease.
- The Spotlight Effect: Many teens downplay their diabetes or avoid using visible devices (like pumps or CGMs) because they feel like "everyone is watching," even though, in reality, most people aren't paying close attention.
- Community Moderation Requires Kindness: Online diabetes communities thrive when members remember to engage with empathy. Disagreement is natural, but maintaining a safe, kind environment is essential to keeping the space helpful.
Resources Mentioned
- Juice Box Podcast - Small Sips Series
- US Med: usmed.com/juicebox or call (888) 721-1514
- Eversense 365: eversensecgm.com/juicebox
- Tandem Diabetes Care (Tandem Mobi): tandemdiabetes.com/juicebox
- Juice Cruise 2026: juiceboxpodcast.com/juicecruise
- Wrong Way Recording: wrongwayrecording.com
Introduction and Small Sips
Scott BennerFriends, we're all back together for the next episode of the Juice Box podcast. Welcome.
LindseyHi. My name's Lindsey, and I've been a type one diabetic for about twelve years now. I'm 25.
Scott BennerIf you'd like to hear about diabetes management in easy to take in bits, check out the small sips. That's the series on the Juice Box podcast that listeners are talking about like it's a cheat code. These are perfect little bursts of clarity, one person said. I finally understood things I've heard a 100 times. Short, simple, and somehow exactly what I needed. People say small sips feels like someone pulling up a chair, sliding a cup across the table, and giving you one clean idea at a time. Nothing overwhelming, no fire hose of information, just steady helpful nudges that actually stick. People listen in their car, on walks, or rather actually bolusing anytime that they need a quick shot of perspective. And the reviews, they all say the same thing. Small sips makes diabetes make sense. Search for the Juice Box podcast, small sips, wherever you get audio. Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan.
Sponsor Messages
Scott BennerThis episode of the JuiceBox podcast is sponsored by US Med, usmed.com/juicebox, or call (888) 721-1514. Get your supplies the same way we do from US Med. Today's episode is also sponsored by the Eversense three sixty five, the one year wear CGM. That's one insertion a year. That's it. And here's a little bonus for you. How about there's no limit on how many friends and family you can share your data with with the Eversense Now app? No limits. Eversense. The podcast is also sponsored today by the Tandem MOBI system, which is powered by Tandem's newest algorithm, Control IQ Plus technology. Tandem MOBI has a predictive algorithm that helps prevent highs and lows and is now available for ages two and up. Learn more and get started today at tandemdiabetes.com/juicebox.
Moderating the Facebook Group
LindseyHi. My name's Lindsey, and I've been a type one diabetic for about twelve years now.
Scott BennerLindsey, how old are you?
LindseyI'm 25.
Scott Benner25. Lindsey, would you like to play a game with me? It's new. I call it help Scott moderate Facebook.
LindseySure. Okay.
Scott BennerAlright. Ready? Drum roll. I'm not sure if I just noticed since my youngest was diagnosed, type one in August, but it feels like more kids are being diagnosed. Now let me just say this. It's always the same. I've been around this forever and ever. Whoever looks up one day, they're like, oh, it feels like this is happening a lot later. I'm hearing about it a lot. Like, sure, you're hearing about it a lot. Your kid was just diagnosed. You're online. The algorithm is feeding you nothing but type one content. Of course, you're hearing about it a lot. Also, you know that thing, Lindsay, when you're out in the world and you see a car that you've never seen before and then suddenly you see them everywhere?
LindseyYep. Exactly.
Scott BennerSame idea. Okay. So this conversation goes very well. First of all, I'm a big fan of letting people talk. I like people right, wrong, or indifferent to be able to speak. Doesn't matter to me. Right? Mhmm. Now here's where this is going to go off the rails very quickly. We all know it's gonna go off the rails very quickly because why? You know why, Lindsay? Let's test you. Why? Well, some people are gonna see this as code for, hey. The COVID's given everybody type one diabetes. So some people are gonna see that as code for, I would like to say that COVID has started type one diabetes, and some people are gonna see this code for, I'd like to say that the COVID vaccine's not necessary. Anyway, it just brings out everyone's crazy.
LindseyRight.
Scott BennerI have no opinion about this one way or the other, Lindsay. I'm just moderating the group. Yes. One person says, oh, I think the same. Also diagnosed in August, I think it's environmental. Yes. Of course, it's environmental. You're being poisoned with type one diabetes by the lead in the paint or the Mhmm. The hooks that your pictures are hung by or what. I I don't know. Also, I don't know that it's not environmental. Not the point. This is just how the things go. Then someone says, well, somebody told me COVID did this, which really what somebody told them if they were spoken to by a reasonable health care professional is that viruses can sometimes be the precursor to a type one diabetes diagnosis. COVID was a virus. Did you get COVID? Yeah. And then they go, COVID did it. It's a bit of a leap. You understand? They missed a lot of the nuance in the middle, but okay. Now somebody who understands all this is inevitably gonna come in and explain it, But they're going to have had one too many go rounds on the Internet with this, and their crazy is gonna come out too. This is also happening. And this is a very reasonable people that I know in here, like very reasonable people. Virus this person says COVID is a virus. Viruses can trigger things. It's not a conspiracy theory. Blah blah blah. But to that person, I would say, no one said it was a conspiracy theory. You read into that in the thing. So now I have to take down a very reasonable comment by a reasonable person. Right? I don't wanna do that. Yeah. So I kinda go like, okay. Let's let people talk. Right? Now a little sidebar, Lindsay. This is boring to you because, children don't like jobs, and I still count you as a child. And I hope you do too because you're young. Yes. Yeah. Yeah. You feel like, yes. Don't worry. I'm a kid. I don't wanna be in charge of anything, please. So this morning, I've already had to make a little bit of a post because there's times of the year, times of the day, and times of the week when people lose their minds, Lindsay. Some of these times are right after Thanksgiving, the entire time leading up till Christmas, the days after Christmas. Those are crazy times. Crazy time is also Friday afternoon, which we also call drink o'clock. Drink o'clock also happens around 9PM eastern time. Most days during the week, there's times when people get a little crazy. Okay. So Scott has to step up once in a while and say, hey, everybody. Let's try to remember what your kindergarten teacher told you and be nice to everybody. Okay. Now this sounds like everyone's going crazy. That's not what's going on, Lindsay, and we'll get to you in a second. I'm sure what you have to talk about is very important. But it's just that once in a while, a handful of people let their crazy out, and then a few other people go, oh, I didn't know we were letting out our crazy. And then, like, they let it out too. It's just a little steam, just letting off a little pressure. You know what mean? Nothing wrong with it. Yep. We need to remind everybody to be cool. So I actually just did this this morning because I can smell crazy train a comet. You understand? Yes. I've been doing this a while. It's coming around the corner. I hear the whistle of choo choo. It's gonna crest the mountain. I'm gonna see it in a second. It's about time for crazy training. Everyone's hope for the new year is gone. January is over. They now realize their lives are exactly the same as they were going to be last year and will probably not change because they're not willing to do or can't do whatever it is they want to do to make a change. So I stepped in. Lindsay, may I redo what I wrote?
LindseyYes.
Scott BennerThank you. And, we will get to Lindsay. I said, kindness is my line. I see this community as something I take care of, not control. People show up here with different experiences, strong opinions, and real emotions. Disagreement and criticism are part of that. They're allowed, expected, and healthy. It means people care enough to engage. We want that. I step in quickly when conversations become unkind, personal attacks, harassment, or cruelty. They don't belong here, and, thankfully, those situations are few and far between. More often, I say something when people are unkind without realizing it, Poor communication or inability to see the other person's perspective is usually the culprit, an easy fix 99% of the time. I mean everything I'm saying here. I go on to say I may also step in when incorrect ideas drift towards being potentially harmful. This isn't about winning arguments or policing opinions. It's about protecting people from advice or narratives that could cause real world harm if taken at face value. Now listen. I don't get involved in that very often. Okay? Let's see. People have opinions. I'm fine with them having it. I actually say that here. I say that said, if you're gonna engage with other people, you need a reasonably thick skin. I am not here to protect anyone from their insecurities or deeply ingrained beliefs. I'm here to maintain a healthy stasis in the community. Now let's take a sidebar for a minute. Lindsay, I'm just gonna mark where I'm at so I can come back and finish reading. If you are right now listening and you think that everybody who took a COVID vaccine is crazy, you think I agree with you. And if you think that everybody who took a COVID vaccine was saving the world, you also think I agree with you. That's the sign of a nice down the middle moderation of a group. Okay? You don't really know what I think about those things. It's not important. What I think is you have an opinion, they have an opinion, there's the truth. It's hard to say what the truth is. Conversation gets us to it, but we do it nicely. In short, some people are going to say things you think are completely wrong, wildly off base, or somewhere in between. We're not here to stop people from being wrong. We're here to keep the space kind, useful, and intact. When you reply to those people, remember to be kind and communicate clearly in a way that you would appreciate if someone disagreed with you. Isn't this nice? To keep this space focused and useful, I don't allow political or religious conversations. Those topics tend to divide more than they help, and they often turn conversations into something less thoughtful and less useful. Drawing that line isn't about shutting down dissent. You're welcome to question, push back, disagree, and feel frustrated to work things out in real time. What matters to me is that as many people as possible feel safe enough to speak and respected enough to stay. If you disagree, explain why. If you're frustrated, say so. Just do it with kindness. And then I finish up strong here, Lindsay, with I'm not interested in spending my life explaining what amounts to the same advice most of us learned in kindergarten, so please be nice. I hope you agree. But if you don't, please know how little that means to me. Now, Lindsay, what I'm trying to say here is, what is wrong with everybody? Hold yourselves together for Christ's sake. That's me talking now, not the guy that moderates the board. Unbelievable. You're a young person. How old were you during COVID?
LindseyI was just about to turn twenty Twenty. When COVID happened. Yes.
Scott BennerDid it ruin your life?
LindseyI'll be honest. It didn't ruin my life like it ruined some people's. However, it definitely was a tough time. I'm sure it was a tough time for everyone.
Scott BennerYeah.
LindseyEveryone had a different experience. But, yeah, I was 20 years old. I had just graduated with my associate's degree in college, and I didn't get to technically graduate because of everything that was going on that year. Mhmm. So that was pretty much the only thing that really happened to me that wasn't so great with COVID.
Scott BennerOkay. Good. Do you find that people your age are arguing about COVID still? Do they speak about it? Does it ever come up? By the way, I had it three weeks ago.
LindseyOh, wow. Well, I'm glad or hope you're well now.
Scott BennerI'm fine. Everything is fine. Let me just say that. Got a little sick. I had the COVID. Everything's good. Good.
LindseyGood. Yes. I actually have never had COVID, or at least to my knowledge, I have not.
Scott BennerNo? Ever get a sniffly nose in the last year and a half?
LindseyI mean, you know, maybe I have. Like I said, like, I've had a sniffly nose here and there, but I haven't genuinely been sick
Scott BennerMhmm.
LindseyIn, like, a long time. So whatever maybe I have had it, maybe I let it go, and I was like, oh, maybe I should check. But then by the point, I was feeling better. I was fine. So I don't know. Anyways, no. I don't really hear it come up too often among people my age, but I know, like, my parents, they've always been talking about it. My grandparents, relatives, I see stuff online all the time. So yeah.
Scott BennerOkay. So I'm gonna say to this person, and I love this person dearly. They've been in the group for a long time. You read into the original posters intent. You can't preempt preempt is a word. Right? Yeah. These conversations by being equally unhinged in the other direction. There we go. That's me doing my job. My job sucks. Okay. It's also better than having a real job. For all of you who have a real job, I'm not complaining. I make a podcast. I run a Facebook group. Basically, my life is awesome. Now let me put my feet up and talk to Lindsay. Lindsay, let me just say what I think about COVID real quick in case it's been unclear to anybody. COVID is a virus. When it first came out, we didn't know what to do about it. It was very dangerous. Some people think that the ways that we handled it were good, and some people think in the ways that the government handled it were bad. I'm sure they're both correct. Anybody who's still talking about that, please see a therapist. Okay. Let's move on. So what did you say? You got the diabetes? How did it happen? Please just say I got COVID.
LindseyYeah. I
Scott Bennergot I'm teasing. I'm teasing. Teasing. Good.
LindseyBack in 2014.
Scott BennerIt would be great if it said, Scott, well, listen. My parents, they lived under electrical lines. We later found out it was a government plot to sterilize white men. And, anyway, it didn't work on my dad. It just gave me COVID, and that's why we live underground with a tinfoil hat on.
LindseyYes. No.
Scott BennerAnyway, sorry. Well, how old were you when you were diagnosed? How did it come up? What is your remembrance of all of it?
Sponsor Messages
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Diagnosis and Ignoring Symptoms
LindseySo I was 14 years old at the time, had just turned 14. I didn't know anything about diabetes. However, I lost an extreme amount of weight. I was constantly thirsty, constantly going to the bathroom, very tired, very weak. I remember vaguely before I got diagnosed, remember I was doing some sort of physical activity in my gym class, like running, and I could barely do it without, like, feeling like I was dying.
Scott BennerStruggling. Yeah. Yeah.
LindseyI was like, I I couldn't understand, but, you know, I was like, I don't know. Maybe there's just something going on with me. I know I've lost a lot of weight, but, like, I don't know why I feel so weak. Later on, I had some friends who were worried about me. They were worried I wasn't eating because of how skinny I got, and I was like, no. Just fine.
Scott BennerAt 14, you lost enough weight that by the way, boys and girls or girls?
LindseyMostly just my girlfriends. Okay. But there were a couple of my guy friends who also had made comments.
Scott BennerHave you known people by that age who had eating disorders by them? My daughter had known a couple of people who had been in treatment and stuff like that. Like, is that something girls are aware of at that age?
LindseyI mean, yes. They are.
Scott BennerOkay.
LindseyI did know a couple people.
Scott BennerYes. Your good friends came to you and went, hey. You okay?
LindseyYeah.
Scott BennerYeah. Okay. And you said And
LindseyI basically was like, yeah. I eat all the time. I'm fine. If anything, I feel like I've been eating more than usual.
Scott BennerI found the secret to life. Okay? So the rest of you, I know you're jealous, but I've been working it down with both hands, and I'm losing weight. I can't stop myself. Yeah. At that point, did you think, hey. That doesn't sound right?
LindseyI mean, like, it didn't, but, like, I was loving it. I mean At the same time, like, I love the idea that people are like, oh my gosh. You're losing weight. Because I'll be honest, when I was younger, I wouldn't say I was, like, extremely overweight or anything, but, like, before the teenage years, you you got a little extra, like, fluff on you, like baby fat or what whatever they say.
Scott BennerSo you felt like it was going the right way for you? You felt good
Lindseyabout it? Yeah. I felt like, oh, well, I'm just having a growth spurt. I'm losing weight. Like, this is normal. Like
Scott BennerPeople are like, what are you doing? You're like, well, I'm eating Doritos with Mike and Ikes on them, I dip them in chocolate milk. It's it's really, you should try it. Yeah. Yeah.
LindseyLiterally, I remember there was one time someone, don't know if it was a friend or a family member had told my parents. They were like, she looks like she's lost a lot of weight. Like, is she good? And then my parents were like, yeah. Like, I think she's going through a growth spurt, but she is really skinny. And I remember a week, there was this one time that my stepmom had offered me cupcakes. She's like, here, you can eat these. Like, you need to eat these. Like, you're skinny. You can have whatever you want. Like, whatever. And just how ironic it was later on figuring out that I had diabetes and only that was making it worse.
Scott BennerShe's doing the equivalent of, honey, you need a cheeseburger.
LindseyYeah. And right.
Scott BennerRight. So it occurred to her at some point, like, you can do this.
LindseyLike Yeah.
Scott BennerYou have room to grow here. Like yeah. But nobody ever goes, this is odd. You look sick. It's Enough to do something about it, I mean.
LindseyI was gonna say, it didn't really nobody noticed it. Like, it's almost like it happened so quick. And then all of a sudden, I remember my mom got a phone call from one of my teachers in school and said, hey. Just calling to check on you. Some of her friends have came to me thinking she has an eating disorder. She's gotten really skinny really fast. And that was when my mom was like, okay. Yeah. She has gotten really tiny, but she didn't really see anything wrong that I was doing. She didn't think I wasn't eating. She knew I was eating. My dad knew I was eating everything. But we did go to get a checkup after that because she was like, you know what? It is kinda weird. It's weird that she has lost this weight very quickly.
Scott BennerRight.
LindseySo then we go to the doctor's office, and we check my weight, all the things. And they tell me that I've lost over, like, 30 pounds.
Scott BennerWow. How tall are you?
LindseyI'm five seven, five eight ish. And I at this point, I was like, I think the lowest weight I got was, like, ninety eight, ninety nine pounds.
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Body Image and Cultural Conditioning
LindseyI think it was, like, anywhere from twenty to thirty pounds. Wow. But yeah.
Scott BennerAt five seven, like, you're not a heavy person.
LindseyI wasn't heavy, but I don't I don't know. In my mind, when growing up because I don't know if I reached five seven quite yet or, like, maybe I was shorter before. I don't know. But I just remember I wasn't, like, the skinny girl. I was I was always, like, a bigger child, like, growing up. Like, I was always, like, the bottom of the pyramid whenever we would, like, do things as kids. Like, you know, like, those pyramids that you'd make with your friends. Like, I was always the bottom because I was the tallest or biggest. You know? So, like, I never considered myself small or skinny until this had happened to me.
Scott BennerYou also didn't consider yourself just fat or Yeah. Overweight. You just you you felt like you were just a bigger girl. Yes. I gotcha. No. I understand. Okay. Yep. Isn't it interesting how we think about that? Like, really, I have a daughter. Like, so if you're not skinny, then you're heavy, which is ridiculous because you sound like you were a very average weight.
LindseyYeah. Yeah.
Scott BennerAnd and build too, by the way. Like, can you help me dig in that as a girl for a second? Because I don't obviously have this context. Is it if you don't look like you belong on the cover of Cosmo, you weighed, like, an amount that doesn't get thought of well? I I I don't under like, the thinking. What's the thinking?
LindseyHonestly, yes. I feel like just media, no matter, like, what age you are growing up, like, you always see the tiny girls, tiny women. And even myself, even though, like, I am not considered, like, obese or overweight
Scott BennerRight.
LindseyAt that age, I still thought I was in my head back then, I considered myself before I got diagnosed with diabetes, I considered myself fat compared to some of my other friends that I may have been around that were tinier than me. And growing up, like, I know there was a couple girls that were very conscious about their weight and would say their weight out loud, and then me being the person I was and taller and bigger. I always did have a bigger weight than these girls growing up. So I did think of myself as bigger. I don't know if I ever considered myself fat, but, like, when you're growing up, there's just so many things going on. You hear so many things. You see so many things. There's all of these trends that go around, and you just compare yourself. At the end of day, that's what it is, is you're comparing
Scott BennerTell me something to use this as an example. Like, a curvy girl, hippie, chesty, but not fat. How do you think of that person? Now? Yeah. Am I painting a picture in your mind that you understand? Okay. So, like, curvy, like, more classically voluptuous, but no loose skin. Like, is that a fat person to you?
LindseyNo. Not at all.
Scott BennerWhat's the word you use there?
LindseyHonestly, when I think of a girl who's curvy, now with my mindset, back then, I might have thought of it differently
Scott BennerMhmm.
LindseyBack with, like, the trends and just growing up. But now, I think a curvy woman is beautiful. Mhmm. I would love to have that body shape. Everyone's body shapes are different, but, yeah, when I think of that shape, like a curvy body but no loose skin, like, that is ideal.
Scott BennerSo the weight's not the point? Because in my mind, that person weighs more than you probably did when you were 14 before you lost weight.
LindseyYes. Right. Yeah.
Scott BennerSo it's not the number then. It's the construction of the body and what it relays Kind of. Visually?
LindseyYeah. I guess, like, visually and I mean, I guess the number does matter when you compare it to others. Mhmm. Whereas, like, yeah, someone might not look a heavyweight, but maybe they are just because of their build, their body build. I learned that growing up, and I realized that now being 25, there are so many different bodies, and you could be any weight. And there's people who would never guess how much I weigh just because of my body build and how I look. You know? Like
Scott BennerI'm just I'm fascinated how the imagery impacts the words we use. Right? Because if you use, like, there's a model, Ashley Graham. Right? Like, she's big lady. Yeah. Right? Right. And hippie and, you know, chesty and by the BMI scale has extra weight and everything. But no one looks at her and thinks, oh, fat. Right. Because at her same weight and height, there are other people who would project a different vibe back to people. I don't know the right words to use and everything. But, like, what I'm saying is I wonder what it is visually that takes the number and throws it away, and I wonder what makes us react the way we react when we see different body styles, I guess, is my question. You know what I mean?
LindseyYeah. I honestly don't know. It starts at such an early age too that it's almost like you don't even remember why this means that to you or why fat or skinny is this or what the
Scott BennerRight.
LindseyThreshold is or, like, the, I guess, spectrum of what you think is considered fat or skinny.
Scott BennerExactly. Or even attractive or desirable or anything. Right? I believe that there's a key for every lock kind of feeling. Right? Like Yeah. I don't think that there's any body style, weight, size, look, tie, hair, color, whatever that somebody won't find attractive. Like, I I always think there's really, you know, a match for everybody.
LindseyYes.
Scott BennerAnd there are things that are thought of more classically, I guess, by the masses. But, you know, thinking about that, but then distilling it down into a 14 year old's mind who's not overweight, but who, when comparing themselves to whatever they're supposed to be is, is comparing themselves back to a model who probably weighs ninety five pounds. Mhmm. It's so interesting that that's where you compare yourself to. And you're Like, who knows what the pathway is to that? Like, what magazine cover you saw or what maybe what thing as simply as, like, what thing you heard your dad say
LindseyRight.
Scott BennerAt one point or another man in your life who was like, that girl's pretty or something like that. And then it, like, sticks in your head that
LindseyI think it does come down to that too. It's like something you may have experienced that you don't even remember or maybe you do. And I'll be honest, like, I did have, like, people in in my younger days, like, they would say, oh, like, you're bigger or, like, you're fat. Like, they have actually used the term fat. So I think in my head back then, I considered myself fat even though I really wasn't.
Scott BennerYeah. Because someone said it to you. Yes. And that's the word they chose because of all of their different experiences or ideas or whatever.
LindseyYep.
Scott BennerSuper interesting. It really is.
LindseyYeah.
Scott BennerI would never I'm using Ashley Graham as an example because I'm aware of who she is. Like, visually, I know what she looks like. I think that lady is really beautiful. Mhmm. It would not occur to me to describe her by her weight. It's interesting.
LindseyYes.
Scott BennerRight? Yeah. Yeah. Okay. So alright. Well, fun times.
The Hospital and Unclear Answers
Scott BennerSo that happens. You get diabetes. Yeah. But your mom takes the advice of, like, the phone call. That's awesome.
LindseyShe takes the advice of of the phone call, takes me in. We get a whole bunch of tests done. They take my blood work, and they check my sugar. And not knowing what an a one c even means or what it is, on their a one c machine, it said my a one c was 14.7.
Scott BennerWow.
LindseyNow I am like, what the heck does that mean? The doctor or the nurse, whoever was in there that read it, she, like, wide eyed looked at it, and I'm like, my mom was, like, kinda freaking out. She's like, what? What? And she goes, well, I don't know. And I'll be honest, this doctor's office, like, I don't think they are very knowledgeable in type one diabetes or diabetes at all because they didn't even they weren't confident in telling me whether I actually had diabetes or not. They said we are gonna send this information and test to another like, I don't even know. At the time, I think maybe an endocrinologist or maybe Helen DeVos where I live. I live in Michigan. And they were just saying, like, I think she might have diabetes. And when I heard that, I was like, what? Like, I was so confused because although I did think back then, like, before diabetes, I did think I was considered fat or overweight. Oh. I didn't understand how I was losing weight, and told me I had diabetes because anything I've ever heard of diabetes was knowledge of type two.
Scott BennerRight. And it meant in your mind, how could I be thin and have diabetes?
LindseyYeah. And then I'm over here, like, okay. Yeah. I haven't been eating the best, but I haven't been eating terrible.
Scott BennerMhmm.
LindseyAnd I'm 14. Like, I it was very confusing. So, basically, they start asking me questions like, alright. Have you been thirsty? Have you been going to the bathroom a lot? Have you been like, just going over all the symptoms, and I'm like, yeah. Yep.
Scott BennerI think there's cameras in our house, mom.
LindseyYeah. Yeah. So now I'm starting to freak out because now it sounds like, okay. It's not just a they don't know yet if I have diabetes. It's a pretty for sure thing that I do have diabetes. But the funniest thing about this is they sent me home, and they said that we would get a call maybe the next morning once results came back. And I was told, just don't eat any carbs or any sugar going home. So my mom was like, well, what does that even mean? I remember we went home, and we had these little turkey sausages. And I'm sure she made me, like, eggs, and I basically had, like, a breakfast for dinner type of thing.
Scott BennerYeah.
LindseyAnd I just remember going to school the next day, like, praying that it was untrue that I did not have diabetes and that, like, it was something else or they just messed up. Like, in my head, I just did not want this problem, and I just went to school acting as if, oh, no. It's gonna be fine. It's gonna be fine. But I remember at school, like, I just kept leaving my classroom to get drinks from the water fountain. Like and I just was like, there is something wrong with me, and I just didn't wanna believe it.
Scott BennerYeah.
LindseyAnd then I got a call maybe only, like, two hours into my school day, and they called me to the office. And my mom picked me up, and she goes, well, we are taking you to Helen DeVos, which is a place that is a children's hospital, and they have great endocrinologists there. And she said, we are taking you to Holland de Vos, and you have type one diabetes, and they have to treat you. So I remember after that just crying on my way to the hospital. I just remember crying the whole way there just, like, so devastated even though I had no idea what even type one was.
Scott BennerSure. Well, I mean, somebody's telling you something's wrong and and you're hearing words that diabetes, you're probably like, oh my god. Like, old people have that. Yeah. Yeah. Yeah. Right? Like, there's isn't that interesting that how much that lack of context impacted that first, like, twenty four hours for
Lindseyyou?
Scott BennerYes. What do you think in hindsight? Now you've had diabetes a long time. Right? So in hindsight, what could have somebody have said to you in that office or in that car that would have made this a better experience, you think?
LindseyI will say my mom was very positive even though, like, I could tell she was stressed out. She just kept telling me it's gonna be okay. We're gonna be fine. We're gonna figure this out. We're gonna do this together. Like, she was very positive and just tried to keep calming me down, but it was very hard for her because she also didn't know anything about type one diabetes. So she didn't really have any answers for me. And in the doctor's office the day before, I really don't know what anyone could say to me because I really just had no knowledge. I I mean, I guess I just wish someone would have said, your life isn't, like, gonna end after this. Like, it's gonna change, but it's not gonna be the end of the world for you.
Scott BennerRight.
LindseyBecause in the moment, I thought it was. I thought, oh my gosh. My life is changing, or it's gonna be a complete one eighty, which, like, don't get me wrong. It was, but now looking back at it after dealing with it all these years, I just think to myself, okay. But I'm here, and I'm okay.
Scott BennerYeah.
LindseyAnd I still live a great amazing life.
Scott BennerIt was different, but not different in the way you were imagining when you didn't have any context for it.
LindseyYeah.
Scott BennerRight. So somebody's gotta say to you then, hey. Listen. You have type one diabetes. You might have heard of diabetes. It's not that type two that you're talking about. This one's, you know, autoimmune related. You know, we'll figure out all that later, but for now, just know that we're gonna get everything straightened out. You're gonna have to take insulin. You know, there's a number of different ways to use it. We'll walk you through that in a while. Tons of people live great with type one diabetes. It's not a thing that's gonna change your life. You know? Do you have any questions? Do you think that would have been more helpful?
LindseyYeah. I think it would have. Yeah. And I definitely got those answers once I got to the hospital.
Scott BennerYeah.
LindseyThey were very much more knowledgeable in type one than my doctor's office that I went to here. Yeah. It just occurs to
Scott Bennerme that I've heard enough of these stories, right, where there's always an hour or a day or, you know, a week where people are, you know, disconnected from good information in the beginning. I mean, it's understandable. I mean, you listen to your story, nobody did anything wrong. You know what I mean? Like, it just unfolded the way it unfolded. Yeah. But still, it it's the part you think about. You know, you said, let me tell you about my diabetes. You could have started with at the hospital this happened or on the first day when we got home. But when you're telling that story, you're digging into those hours, I'm assuming because they were meaningful to you.
LindseyYes. They were. Yeah. Yeah. Definitely. It's just like one of those moments in my life that definitely are just like ingrained in my brain.
Scott BennerAnd I don't think doctors realize that that first thirty six hours of your story is so impactful and that nobody tried to contextualize any of it for you, and that's probably why it's impactful to you.
LindseyYes. Just like the unknown. Yeah. I think that's why.
Management, Burnout, and the "Spotlight" Effect
Scott BennerThat's my point. Anyway, alright. They get you in the hospital. They fix you all up. They send you home. What do they give you? They give you the insulin pump, needles, a pen, CGMs. What did you get?
LindseyI got pens. I just use pens and just use a regular glucose monitor and prick my finger to check every time.
Scott BennerHow long ago? Twelve years?
LindseyYeah. Yeah. About twelve years. Yeah. Going on twelve years.
Scott BennerAnd did you eventually end up with other tools, or did you use those for a while?
LindseyI used those for about well, I actually used them for a couple years. I did get a CGM, one of, like, the old, like, Dexcom g fours or whatever they had. I remember using those, but then I remember insurance companies, like, it was very hard to get ahold of those things. So it was, like, on and off. Sometimes I would wear Dexcom, sometimes I wouldn't. But then it came down to the pump, the insulin pump, if I wanted to be on that. They asked me a year after if I wanted to get on it, and I was totally against it. I did not want anything connected to my body. I don't know why I was so against it, but I was. And then couple years later, 2018 going into 2019 is when I got my first insulin pump.
Scott BennerOkay.
LindseyAnd then I got back on the Dexcoms.
Scott BennerThat's, like, six years into it.
LindseyYeah. Well, I will say it was, like, five. Like, 2014, '20 2018 going into 2019.
Scott BennerI like it when people do that. I'm like, it's like six years. You're like, no, Scott. Not six. You silly, silly man. It's five.
LindseySame thing. Yeah.
Scott BennerYeah. So about halfway. You describe in your note that you experienced burnout. When's the first time that happened to you?
LindseyI would say probably year two is when I actually had burnout because the first year, we were so on top of everything, but my parents were helping me so much.
Scott BennerMhmm.
LindseyAnd they were doing a lot of the work. And I was letting them, but I also wanted to be independent and show that I could do everything on my own. And I think I took on a little bit too much too fast because I wanted to.
Scott BennerRight.
LindseyAnd I didn't realize, oh, I'm literally gonna have this for life. I'm doing this by myself for life.
Scott BennerPace yourself, Lindsay.
LindseyYeah. I should've let my parents do a lot more for me than I let them. I wanna say after, like, the first year, was like, yeah. Just let me handle everything.
Scott BennerCan you tell me a little more about what made you feel like you wanted that separation?
LindseyI really struggled with everyone talking to me about diabetes all the times. Like, when I was first diagnosed, it was, like, just the number one thing, like, how's your sugar? What's your sugar? From my parents or my friends. And it just got kind of, like, annoying knowing, like, that they were kinda in control of everything, and I wanted to take that control back. I hated just, like, having to write everything down and them having to ask me everything and, like, write my little logbook what my sugar was and what I ate that day. I just remember, like, hating having to relay the information to them. I just wanted to do it myself.
Scott BennerToo much diabetes, and you don't need people reminding you constantly.
LindseyYeah. It was it was my life. Like, the first, like, few years, it was all I was known for was diabetes, and I actually hated that.
Scott BennerThat's how it felt to you. Do you think that was how it felt to do you think it was true? Do you think did people shift in your life and stop seeing you and only see the diabetes?
LindseyNo. I I think it was just in my head, but I will say, like, I was one out of the two people in my entire high school that had type one. Oh. So nobody knew. So, like, when I was, like, that second person that have it at my high school, it was like, woah. Like, everyone just thinks of me as, okay. The girl with diabetes, the girl that, like, leaves right before lunch to do her, like, blood sugar checks and insulin before lunch, stuff like that. It was just like a thing, and I also think that's why I didn't want the insulin pump for so long too. I was like, I like to be discreet, just take my shots and stuff. I didn't want people seeing
Scott BennerYeah.
LindseyLike, gadgets or whatever.
Scott BennerI don't know if I've told this story. I haven't heard before, but when my son was, like, I don't know, 12 or 13, and we went to a baseball game on Saturday, pretty far from our house. We were all done, and we stopped at this diner that I knew about on the way back. And this is a sidebar, Lindsay. I knew about the diner because I once had lunch there with the film director, Kevin Smith, because it was the diner in the town where his little film office was. Red Bank, New Jersey for anybody who was interested. And I knew the diner, I thought that was cool. And so we stopped there to have, you know, it's an old New Jersey diner. And they sat us down at a table in the middle of the room. So imagine booths around three walls and then two tables in the center. Right? So there's enough room to walk around the freestanding tables, and there's booths that go down three sides of the wall. And they put us at the table in the middle. And I noticed after being there for a few minutes that my son was uncomfortable. And I asked him why, he said, I don't like sitting here. Everyone's looking at us. And I said, no one's looking at us. Like like, people are eating their lunch. They're talking to each other. I'm like, look around. No one's looking at us. I'm like, you feel like they are. I understand. You feel like you're on a stage and people are listening or and looking, but they're really not. Like, really pay attention for a minute. I was like, people can barely pay attention to their own lives. They're not looking at you. And it made them feel better. And so my question to you was, were people looking, or did you feel like they were looking?
LindseyI probably just felt like they were looking.
Scott BennerOkay. Alright. So you were not experiencing people, like, walking by and going, there's Lindsay, the girl with diabetes, and pointing and shunning you. That wasn't happening.
LindseyNo. Definitely not. But, like, it definitely was, like, a thing. Like, everybody knew I had type one diabetes.
Scott BennerTo keep this going a little longer, my son was in a baseball uniform. He was the only one not dressed like every other person walking down the street. Like, I'm sure people did look up and go, oh, look. That kid must have come from a baseball game. But they weren't then going, what an ass. Like, they were just like you know? But I take your point. So people are aware of this. You know they're aware of it because there's so few people with diabetes. You are ducking out here and there. But whether they're actually looking and talking or not, it really doesn't matter to you. Right? Like, it still feels the same one way or the other. Yes. Right. Okay. Alright. And you think that kept you off a pump for a while as well?
LindseyIt did. I do remember one experience too when I had a Dexcom on during class, and I remember my Dexcom was beeping that, like, my sugar was either high or low. I can't remember. But I just remember a teacher I don't know if it was a substitute or a teacher, but they had said, phone's off. Somebody turned their phone off or I'm taking it away. And then I remember the whole class had my back, and they go, that's her diabetes. And they, like, they, like, yelled at the teacher for me.
Scott BennerLady, you're gonna feel bad in a second. Wait till we do this. Finally, we've got the upper hand as a group of small children.
LindseyRight. So, like, don't get me wrong. I love that they all, like, knew about it, had my back, knew that that noise was not my phone, but, like, my Dexcom notification. But I hated the attention from it, and I oh, that just turned me off. I'd after that point, I remember I silenced my Dexcom alerts because I hated the attention the sound brought to me.
Scott BennerYeah. That's not happening again to me.
LindseyYeah.
Scott BennerThat hurts you too. Right? Because you can't hear the damn thing beeping.
LindseyYep. And then I let high sugars go or maybe let my sugar get too low. Mhmm.
Scott BennerAll to keep people from either sticking up for you or being aware of you.
LindseyYeah. I almost like I do remember I almost kinda just wanted to forget or think that I didn't have diabetes. I remember, like, in the beginning, I tried really hard to make it seem like, oh, I don't really need to do that much. Like, I can still live a normal life because I remember my friends, parents, relatives, everybody that I was around was just worried about it. Worried about being around me, and I had I hate scaring people. So I think I tried to play it off, Like, oh, it's really, like, not that big of a deal, which it is, but,
Scott BennerOh, that's interesting. You downplayed the impact diabetes had on your life so that other people could feel comfortable?
LindseyKind of. Yeah. I will say kind of, in a sense, just because I didn't want people to be scared of, like, what could happen to be around them.
Scott BennerThen that focuses them on you more?
LindseyNot necessarily. But
Scott BennerYou ever go to therapy? This is we're getting pretty deep here. This is going
LindseyI know we are. I'll be honest. I don't go to therapy, and I should.
Scott BennerLike He's like, listen. It's on my list. Okay?
LindseyIt's on my list. But
Scott BennerBut it's an interesting insight from you that you knew that your diabetes was making other people uncomfortable.
Closing and Outro
Scott BennerThis episode was too good to cut anything out of, but too long to make just one episode. So this is part one. Make sure you go find part two right now. It's gonna be the next episode in your feed. The podcast you just enjoyed was sponsored by Tandem Diabetes Care. Learn more about Tandem's newest automated insulin delivery system, Tandem Mobi with Control IQ plus technology at tandemdiabetes.com/juicebox. There are links in the show notes and links at juiceboxpodcast.com. Are you tired of getting a rash from your CGM adhesive? Give the Eversense three sixty five a try. Eversense cgm.com/juicebox. Beautiful silicone that they use. It changes every day. It keeps it fresh. Not only that, you only have to change the sensor once a year. So, I mean, that's better. US Med sponsored this episode of the Juice Box podcast. Check them out at usmed.com/juicebox or by calling (888) 721-1514. Get your free benefits check and get started today with US Med. Hey, kids. Listen up. You've made it to the end of the podcast. You must have enjoyed it. You know what else you might enjoy? The private Facebook group for the Juice Box podcast. I know you're thinking, oh, Facebook, Scott, please. But no. Beautiful group, wonderful people, a fantastic community. Juice Box podcast type one diabetes on Of course, if you have type two, are you touched by diabetes in any way, you're absolutely welcome. It's a private group, so you'll have to answer a couple of questions before you come in. We'll make sure you're not a bot or an evil doer, then you're on your way. You'll be part of the family. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of the Juice Box podcast. How would you like to share a type one diabetes getaway like no other? Join me on Juice Cruise 2026. You may be asking, what is Juice Cruise? It's a week long cruise designed specifically for people and families living with type one diabetes. It's not just a vacation. It's a chance to relax, connect, and feel understood in a way that is hard to find elsewhere. We're gonna sail out of Miami, and the cruise includes stops in CocoCay, San Juan, Saint Kitts, and Nevis aboard the stunning Celebrity Beyond. This ship is chosen for its comfort, accessibility, and exceptional amenities. You're gonna enjoy a welcoming environment surrounded by others who get life with type one diabetes. I'm gonna host diabetes focused conversations and meetups on the days at sea. There's thoughtfully designed spaces, incredible dining, and modern amenities all throughout the celebrity beyond. Your kids can be supervised, there's teen programs so everyone gets time to recharge, Not just the the kids going on vacation, but maybe you get the kickback a little bit too. There's gonna be zero judgment, real connections, and a whole lot of sun and fun on juice cruise twenty '26. Please come with me. You're going to have a terrific time. You can learn more or set up your deposit at juiceboxpodcast.com/juicecruise. Get ahold of Suzanne at cruise planners. She will take care of everything. Links in the show notes. Links at juiceboxpodcast.com. Have a podcast? Want it to sound fantastic? Wrong way recording.com.
#1817 Transplanting Islet Cells with Piotr Witkowski, MD, PhD
Scott talks with transplant surgeon Dr. Piotr Witkowski about islet transplantation, early results with tegoprubart, regulatory roadblocks, realistic timelines, and where this research could lead. Learn more (Best on a laptop or desktop).
Companies that Support Juicebox
Key Takeaways
- Regulatory Hurdles: Pancreatic islet transplantation is currently restricted in the US because the FDA regulates islets as a drug, requiring rigorous phase trials, unlike other countries where it is treated as an organ transplant.
- A New Breakthrough: A novel anti-rejection medication, tegoprubart (delivered via IV), is showing remarkable success in protecting transplanted islets without the severe toxic side effects of traditional immunosuppressants like tacrolimus.
- Advocacy is Crucial: Efforts led by Breakthrough T1D (formerly JDRF) and patients aim to urge the Department of Health and Human Services (HHS) to adjust regulations, unlocking insurance reimbursement and making the procedure a standard of care.
- Managing Expectations: While current trials show promise for desperate patients—especially those suffering from severe hypoglycemia unawareness—this procedure is not yet a widespread "cure" and is not currently available for children.
- The Ladder to a Cure: The eventual goal of islet transplantation research is to refine the procedure to a point where no long-term immunosuppression is necessary, paving the way for future unlimited stem cell-derived islet therapies.
Resources Mentioned
- Dr. Piotr Witkowski's Clinical Trial Info: pwitkowski.org
- Contour Next Gen Blood Glucose Meter: contournext.com/juicebox
- Medtronic Diabetes (MiniMed 780G): medtronicdiabetes.com/juicebox
- Breakthrough T1D (formerly JDRF): breakthrought1d.org
- The Human Trial (Documentary): Mentioned as a highly recommended watch to understand the clinical trial process.
- Defining Diabetes Series: juiceboxpodcast.com (Click on Series)
- Wrong Way Recording (Podcast Editing): wrongwayrecording.com
Introduction & Meet Dr. Piotr Witkowski
Scott BennerHello, friends, and welcome back to another episode of the Juice Box podcast.
Piotr Witkowski, MD, PhDDoctor Piotr Witkowski, I'm a I'm a transplant surgeon and professor of surgery at University of Chicago.
As attending surgeon, as a director of pancreatic islets transplantation surgeon.
I've been doing kidney and pancreas transplant and running clinical trials in islets transplantation optimizing the procedure.
Scott BennerAt the end of this episode, the doctor will share a website where you can learn more about his trial and if you are eligible.
He asked me to let you know that the website is best viewed on a computer or a laptop.
Doesn't really work too well on a cell phone.
So when you head over there, use your computer, your laptop, stay off that cell phone.
While you're listening, please remember that nothing you hear on the Juice Box 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.
Today's episode of the juice box podcast is sponsored by the Kontoor next gen blood glucose meter.
This is the meter that my daughter has on her person right now.
It is incredibly accurate and waiting for you at kontoornext.com/juicebox.
Today's episode is also sponsored by Medtronic Diabetes, who is making life with diabetes easier with the MiniMed seven eighty g system and their new sensor options, which include the Instinct sensor made by Abbott.
Would you like to unleash the full potential of the MiniMed seven eighty g system?
You can do that at my link, medtronicdiabetes.com/juicebox.
Piotr Witkowski, MD, PhDI'm doctor, Piotr Witkowski.
I'm a I'm a transplant surgeon and professor of surgery at University of Chicago.
I was, educated and trained in Poland as a general surgeon, and I came to United States to do some research.
Initially, I I was involved in in research related to transplantation, different way to develop, the way to transplant organs without immunosuppression.
We call it tolerance.
I did my research at Columbia University in New York.
At the same time, I was involved in, in islets transplantation.
My mentor got a grant, and and we've been developing islets transplantation procedure or operate operation over there.
And then, after that, I accomplished training in in in a in a surgical training in transplantation, Columbia Presbyterian.
And after that, it was seventeen years ago when I came to Chicago as attending surgeon, as a director of pancreatic islets transplantation, surgeon.
I've been doing kidney and pancreas transplant and running clinical trials in islets transplantation optimizing the procedure.
So it's been seventeen years at the University of Chicago.
Scott BennerHow many iterations do you imagine that that procedure has gone through in that time?
Piotr Witkowski, MD, PhDHow many alternations?
Scott BennerHow many times has it been improved or updated or changed from where you started?
The Regulatory Hurdle of Islet Transplantation
Piotr Witkowski, MD, PhDSo this been a problem because pancreatic islets, which we isolate from deceased donor organs from pancreas, has been regulated in The United States as as a drug.
So, it was twenty six years ago when they they optimized eyelid isolation technique and eyelid transplantation procedure in Edmonton, Canada, achieving great results.
We wanted to adopt it right away, but then FDA said, no.
You have to test it as any other new drug in control environment and perform phase one, phase two, phase three clinical trials.
And when you do clinical trials, you have to do everything the same way because you testing the islets as a drug, which should be manufactured every time the same way.
And it took us over fifteen, eighteen years to accomplish those trials.
And over this time, we couldn't really modify anything only because it's been regulated as a drug.
Scott BennerThat time there was you trying to satisfy the FDA's ask?
Piotr Witkowski, MD, PhDRight.
Scott BennerOkay.
Piotr Witkowski, MD, PhDRight.
Over this time, the islet isolation technique hasn't changed.
Actually, it hasn't changed for twenty six years because we couldn't do it.
We have to do it in the one standardized way
Scott BennerMhmm.
Piotr Witkowski, MD, PhDTo satisfy FDA.
We've been changing and optimizing clinical part, the, you know, changing immunosuppression, replacing one immunosuppression with the other to to to achieve better results, but we couldn't really optimize.
And then because it was still all these years, it was clinical research, very expensive clinical research, the number of the patients which we were enrolling was was low, and therefore, we couldn't even modify the clinical part much.
Learn I mean, change a lot because of of limitation in in in in funding and and then in in patient number.
So the regulations which we apply in The United States and only in The United States has been not really helping the progress in the field.
In other countries, Canada, Europe, Australia, ILETS has been regulated as any other organ for transplantation, And and and it it means that every procedure is driven by the physicians, and and it can be developed changed all the time, optimized all the time for the optimal outcomes.
Scott BennerAre there other people around the world doing the same work and and able to move and iterate more quickly?
Piotr Witkowski, MD, PhDRight.
So for example, in Edmonton and Canada, they've done, over 700 eyeless transplant over the last twenty years.
In Europe, they did over thousand transplants, and they have this approved in England, in UK, in France, in in, in Switzerland.
It's a standard of care procedure based on the results from our clinical trials.
And we in The United States still cannot still have it approved because, again, it's a it's regulated as a drug, and it requires special conditions, validations, funding, liability, and it's it's way beyond the capability of of academic institutions.
Scott BennerTo reach that.
I I mean, I hear how frustrated you are.
I mean, did you go back to the FDA and explain to them why and what Yes.
Piotr Witkowski, MD, PhDSo for the last five years, we've been talk we've been publishing.
We've been presenting scientific data and advocating for adjustment in the regulations since for last five, six years.
First, it was COVID, which was the obstacle.
FDA was was focused on COVID.
After COVID, the regulators were not keen on any changes Mhmm.
Despite the fact that there is no no transplants as a standard of care.
No islets are available outside the clinical trials, and there was no progress.
So we've been publishing articles.
We've been we voice our concerns, and there was no really traction until recently when breakthrough t one d, the major foundation supporting type one diabetes got involved and now and our patients and social media, and now there is a hope that this this regulatory adjustment may happen.
Based on current law and regulations, the secretary of HHS has authority to adjust the regulations himself based on the feedback from FDA and HRSA, but but it can be done quickly and efficiently.
We are ready to work with regulators on proper adjustments, which will allow islets transplantation to be, on the one hand, available to patient as a standard of care, but still safe and an effective procedure.
So all the safeguards are are in place to reassure that it's done in the safe way.
Scott BennerIf health and human services made that change for you, how would that change what you're doing right now?
Piotr Witkowski, MD, PhDSo the major change would be this, that if islets are regulated as organ based on covered results, we can go to insurance and and show them the results.
And I know that they will, they like them because I already showed them to several medical directors of the insurance, and they said we will pay as long as regulations allows for this that your product is it's approved for clinical use.
So once the islets are regulated as organ, our product would be approved, and then it can be reimbursed.
Once it's reimbursed, we can do many more patients.
I mean, we can offer this procedure to many more patients, and then we can do many more studies and enroll patients faster and learn faster and progress the field.
And we can test the new ways, optimize the islet isolation, optimize the clinical protocols much faster, much more efficient, and and create progress.
Scott BennerSo right now, you're kind of stuck doing a clinical trial.
But if they changed it, you could just start doing the procedures, it would work for people?
Piotr Witkowski, MD, PhDOn one hand, we can start doing the procedure based on the our current experience
Scott BennerMhmm.
Piotr Witkowski, MD, PhDUsing approved medication.
At the same time, we can start continue doing clinical trials, and we will be testing new medication, less toxic, more effective medication is still clinical trials, but only a small fraction of those procedures will be paid by the research and everything else, the core of the procedure, which is standard of care, will be paid by the insurance.
Yeah.
So for example, with the same funding which we're getting from breakthrough t one d to transplant 10 patients, we can transplant 100 patients with the same funding.
So this will be a major change.
Scott BennerBe a little cynical for a second and tell me why you think set up like this and why it hasn't changed.
Piotr Witkowski, MD, PhDPeople who we talked to, were not focused on this.
They were always like, there are there are so many different problems.
We have to focus on something else.
I mean, what can I tell you?
Yeah.
There was no traction so far, but now there is traction.
And I think also that what's trigger changes now that we testing new medication, less toxic, patients are doing much, much better than before.
Mhmm.
So before was the general feeling is that Eyle's transplantation, well, they can help some patients, but there is so much side effects of of immunosuppression that the end of the day, it's not so beneficial.
So people were skeptic about the Ehlers transplant.
Now seeing how seeing patients with improved with reverse diabetes without side effects patients, people are excited about it.
So I think we brought it to the different level of efficacy and safety, and this triggers that that people are interested into this and see this as a chance for on the path to the cure.
Yeah.
And the ultimate goal is to to remove the need for immunosuppression.
But to get there, we have to go step by step.
We have to use better medication and then and then less medication, lower doses and and stopping the medication.
But it requires, you know, clinical testing before we are completely can can do it without immunosuppression.
Tegoprubart: A Breakthrough in Immunosuppression
Scott BennerSo is what you're saying is that the the tego prubart is that how do you say it?
Tego prubart?
Piotr Witkowski, MD, PhDTego I don't know why they come in with those names.
Tego prubart.
Yes.
Scott BennerTego prubart.
The understanding is that could be used in your procedure changes the feeling to people.
Piotr Witkowski, MD, PhDYes.
Scott BennerTaking it from, like, well, sure, we can do it, but you're gonna just trade one problem for a different problem.
Exactly.
Right?
Exactly.
And now it doesn't feel like that anymore.
Piotr Witkowski, MD, PhDRight.
Right.
Exactly.
So with with the tacrolimus, which is great medication, allowing us to keep the organ transplantation working for many, many years, but the trade off was that there was toxicity to the kidney, to the brain, to the nerves, to causing hypertension, causing diabetes.
So there there was a a trade off.
But we didn't have better medication over the last thirty years.
And now with tegoprobar again, these are the very preliminary results.
We have only 12 patients and and short observation, but all the patients do not have those side effects.
They don't have any side effects so far.
And they have, Ehlers transplant successful, and they they reverse diabetes.
So that's why you hear from patients that they feel cured because they don't feel burden of this therapy so far.
Scott BennerYeah.
What is the Tego doing that's allowing it to target this situation without suppressing the rest of your immune system so much?
Piotr Witkowski, MD, PhDRight.
Right.
So it is still suppressing the rest of the immune system, but the way it's suppressing is is more selective.
It's it's more accurate.
It's not, let's say, it's not as global as as the other medication.
The other medication, they're targeting many differ entire immune system and and many different checkpoints.
And then this medication, it's it's just one one main still main mechanism of rejection, but only one.
So the other is still working and and protecting patients and not causing the side effects.
So it's it's much more selective.
Okay.
And therefore, toxicity is so far, it's negligible.
Scott BennerMhmm.
But now this medication's being delivered every twenty one days through an IV.
Is that right?
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Piotr Witkowski, MD, PhDSo far.
Right.
So far.
And, again, we had to start with something.
Right?
Mhmm.
So the the delivery is inter intervene intravenous infusion.
It's reliable.
This is something is done, you know, here in in in our infusion center, so we know is the liver properly.
But moving on, you know, the company is already working on subcutaneous infusion I mean, injection by the patients.
Mhmm.
And then the frequency on injection can change.
The dose was was just the with was just a start was was actually, the dose was just proposed.
We're using the proposed dose.
We can based on experience, we can learn that the dose might be too high.
Right?
And we may go with lower dose.
So the dose might be adjusted or needs to be higher.
We'll see.
But that's why I'm saying it's just the beginning.
But, eventually, the there is a a good chance that this medication will be given by the patients themselves at home.
Scott BennerMaybe no differently than how people give them GLP shots.
Piotr Witkowski, MD, PhDYeah.
Exactly.
Like, once a week or once a month.
Exactly.
Yes.
Scott BennerWhat do you think the time frame is for that?
Has has that company given you any idea?
Piotr Witkowski, MD, PhDNow the company
Scott BennerIs that Eladon?
Is that the name of it?
Piotr Witkowski, MD, PhDYeah.
The the company is Eladon, and they're working on this.
They know about it.
They're working on this.
They're getting ready.
It's hard for me to say when, but but it's not far.
It's not far.
Scott BennerIs it I know that it's not your company, but can I ask you, is there a way to you know, with people who have so many different autoimmune issues, RA, for example, do you think there'll be injections that maybe we'll be able to more surgically target other autoimmune issues?
Piotr Witkowski, MD, PhDYes.
Yes.
As you said, actually, the this medication was the first tested with other immuno ALS, other autoimmune disease.
And any immunosuppression used for autoimmunity we test in transplantation or anything developed for transplantation is tested there because the mechanism is is very similar.
So definitely very similar.
Maybe this way, the drug with the same mechanism developed by Sanofi, and they're testing this for autoimmunity, and now they're thinking to come back to transplant.
So it's not only Eladon.
It's gonna be Sanofi with very similar medication.
And they already has sub q formulation.
Scott BennerOkay.
Oh, do they?
Sanofi does.
Yeah.
Yeah.
So this could really change, like, the face of transplantation to
Piotr Witkowski, MD, PhDI feel that this is this is a major change after thirty years because this is what I exactly feel comparing when I see patients on tacrololus on daily basis after kidney, pancreas transplant.
I see those pay after the heart transplant, amount of work on us and the patients to adjust the dose.
And the patient needs frequent blood test to change and control the level of the medication, and then we're changing the dose up, down.
Mhmm.
Patient's getting confused.
And despite change those changes, patient experience side effects.
It's a lot of a lot of work, a lot of frustration.
And now in the study with tegoprubar, there is no adjustment in dose.
There is nothing.
Yeah.
We just shake hands.
We hug.
How is everything?
Everything is fine.
From this perspective, it can change.
Less toxicity, less side effects, less less work on the patient and physician side to adjust the the dose of medication to to to treat or prevent the the side effects.
So this will change not only islet, it will change the transplantation.
Of course, assuming that nothing bad will happen.
Right?
There there will be no sudden unexpected adverse event.
And I can tell you historically, this medication was developed twenty five years ago in animals, and the results in animals were amazing.
But when it was used for kidney transplant in first three patients, all of them develop blood clots, which immediately the study was closed, and this was something nobody predicted.
So it took twenty five years for this the same medication to be modified not to cause cause the blood clots, SSI defects, and now we can we can we can use it.
So this is just example that despite, you know, extensive testing in animals, something may happen in humans which we couldn't we couldn't predict.
So far, it's good.
Scott BennerRight.
Piotr Witkowski, MD, PhDSo we have patient the the the first patient, the longest follow-up, almost two years.
Wow.
And there is patients beyond two years in the kidney trials, and so far, so good.
For our patients, we will be extending the the tegoprobar therapy for the third year for the and watch them longer to get more experience and learn more.
Scott BennerBut it's a miracle that the company kept going for all that time after the blood clots.
Piotr Witkowski, MD, PhDRight.
Right.
I mean, they were persistent.
Scott BennerYeah.
Somebody really believed in what they saw.
Yeah.
Piotr Witkowski, MD, PhDYes.
And the reason is because we saw amazing things which we never seen before in animals.
So that's why we were so excited.
And and and the company and we and others believe that if we overcome the side effects, we can still benefit from this mechanism and and for low toxicity.
The Future of Islet Supply and Encapsulation
Scott BennerYou get over these humps.
Let's just say it's an approved thing and you can start doing as many of them if you want.
I mean, how many islet cells are actually available?
Like, how many people could you actually accommodate if it got to that point?
Piotr Witkowski, MD, PhDYou mean from deceased donors.
Right?
Before the stem cells.
Because we still, need as yeah.
This is the question where you're going.
Right?
The the limited, number of deceased donors, limited number of islets.
The goal to have the updated regulation and keep doing disease donor islets transplant is to help the most desperate patients improve their life, reverse diabetes, and learn and learn a lot and progress the field in order to to minimize immuno or eliminate immunosuppression.
Now in the meantime, of course, we want to help patients.
Now how many patients?
We are able to do do I mean, we are limited by the funding and the money.
There is a 1,000 pancreas transplant done every every year in The United States, and they're using the best organs from one perspective.
The organs the pancreas which we use for islets are different than organs used for whole organ transplantation, so it's not competitive.
So let's say I mean, you know, nothing will happen overnight.
Right?
But, like, today, we are the only active center.
City of Hope is another one doing one or two transplant, and we do 30 transplants.
So today, it's like 40 transplant a year in the entire country.
Yeah.
But we can do, let's say, a thousand.
Right?
So thousand is much more than than than 40.
Right.
It will progress the field, oh, extremely
Scott BennerMhmm.
Piotr Witkowski, MD, PhDIf we can do a thousand.
It's not as a solution for every type one diabetic.
Scott BennerRight.
Piotr Witkowski, MD, PhDBut we can sort it out the way to minimize immunosuppression when the cells when when the stem cells islets are available.
We can just combine this new stem cells islets, which are in unlimited supply with minimal immunosuppression or or no immunosuppression, which we will work out using disease on our islands.
Scott BennerSo if to paint a picture for people, if you kind of go back to where the doctor was talking about starting twenty five years ago and think of this as a ladder to an eventual cure, which is when people talk about it, you know, in everyday life, that's what they're talking about.
They're like, give me a pill that shuts this off and right and it ends.
Right.
This thing that you're doing right now is huge.
It's a big deal.
It's amazing at how well it's working.
But even if you perfect it, it's just another step on the ladder.
Is that right?
Piotr Witkowski, MD, PhDIt's another step on the ladder.
But what I want to highlight in this medication in animals Mhmm.
We were able to maintain the kidney and islets function only with one medication.
In the tegoprobar trials, we're using thymoglobulin.
We're using my my my 40 additional medication.
So that is more than tegoprobar to protect the islets.
We saw in animals that just tegoprobar can protect it, so there is space to minimize immunosuppression.
Now once we stop tegoprobar in animals, the organs will keep going for several months.
So tegoprobot provides some kind of modulation which may allow for tolerance for no immunosuppression, let's say, after a year or two.
Understood.
But in order to to do that, we need develop a new monitoring system of the islets gram function.
So once we start reducing the dose, we need to know if islets are being compromised or not before they're gone.
Mhmm.
We don't want to expose patients to lose islets overnight only because we lower the dose.
So in order to do it, we we need more.
We need tools to money better monitor islets function, which we don't have today.
But this is the ultimate goal just to do it the way that no immunosuppression in the long term is necessary.
Scott BennerIf there's an eventual end to this, do you think it's found through medication, or do you think it's found through encapsulation?
What do you think is the best way to put
Piotr Witkowski, MD, PhDSo, yeah, how I'm gonna put it.
Today, for cadaveric islets, they need a lot of blood supply instantly in order to survive.
Any encapsulation, any additional layer separating the islets from blood supply, and this is what capsules do Mhmm.
It's just killing the it's it's just compromising their survival.
So I do not believe that encapsulation is the solution.
Okay.
Because they need blood supply.
Now for the stem cells derived islets, they might be more resistant.
They may need less blood supply.
Maybe there are new materials.
Maybe it will happen.
But I know from the theoretical perspective, you are doing something opposite than you should.
Islets needs a lot of blood supply, and you should improve blood supply rather than limit the blood supply.
Therefore, I don't believe in an encapsulation immunosuppression.
Now genetic modification, people are trying to modify them so they're invisible to immune system and avoid this.
I think it's gonna be difficult because we know only small part of of biology, of human physiology, immunology.
We know something, but we don't know everything.
And e and we can overcome some obstacles which we know about, but there might be another pathway which we don't know today, which will be causing the rejection and destruction.
Scott BennerRight.
Piotr Witkowski, MD, PhDFor example, today, all this immunogenetic modification to make them invisible to immune system is basically targeting the the rejection, but not really helping from to protect from autoimmunity, which kill the islets at the very beginning.
So we're not sure how to gen what would genetically modify to protect them from autoimmunity.
Scott BennerRight.
Piotr Witkowski, MD, PhDSo it's not close.
It's far in my mind.
Yeah.
It doesn't mean we shouldn't try.
Scott BennerNo.
No.
Piotr Witkowski, MD, PhDOf course.
That's why I'm focused on on on tegoprobar because this is something we can have today and tomorrow to help the the most desperate patient.
Scott BennerFeels like a more quicker, more direct path to you.
Piotr Witkowski, MD, PhDYeah.
Yeah.
Yeah.
I mean, it's something something we can do now Tangible.
Before before the other stuff is developed and stuff.
Defining a Cure and Setting Expectations
Scott BennerAnd good for everybody else doing that other work.
But like you said, that's if you find a way to protect the cell but don't shut down the immune response, you could just end up with type one diabetes again with the new cells.
Yeah.
Yeah.
Yeah.
My gosh.
Let's shift gears for half a second.
I wanna ask you more of a kind of a big picture question.
Your work is getting shared online a lot right now.
And I think it's exciting, and I love that people are sharing what's going on.
But from my perspective, I'm a person who's been making this podcast for twelve years, and it's focused on helping people take good care of themselves.
I get worried sometimes that people see this and think, oh, it's all done.
They fixed it.
I don't have to take very good care of myself.
It's almost over.
I wanna know if you have that concern or and if you can speak to directly to those people and tell them what's the the realistic timeline between what's happening right now on your bench and that random person who is not having dire health issues right now showing up in an office, getting this procedure, not having to take insulin anymore.
Piotr Witkowski, MD, PhDNo.
No.
Absolutely.
Absolutely.
Patients should take care of themselves and keep themselves as healthy as possible that when one day the real cure is available, they will not have problems.
Right?
They will be still seeing, have a vision, don't have amputations, don't require amputation or heart attacks.
So no.
No.
Definitely, patients should should do the best they can to stay as healthy as possible when the cure comes one day.
What we do, I want to highlight, it will help the most desperate patients in a limited number until we get there.
And it's still I'm not saying five years.
It might be much longer.
Yeah.
So, no, this is just what you're seeing and hearing is just impression from patients who feel great.
Right?
Mhmm.
But we can apply it to everyone today.
Yeah.
We cannot.
We don't have the the means and and technology, and it's not safe for everybody.
Right?
Scott BennerWell, I thought I was gonna say, it's a small group of people from a highly curated group of people too.
Right?
Piotr Witkowski, MD, PhDYes.
Yes.
Yes.
So the outcomes are better and the patients are happy, but it doesn't mean we can offer this to everyone.
Definitely not.
And I'm not sure when, and and people should stay as healthy as possible.
Right.
Definitely.
Scott BennerThere is even even a world where if their health has waned and this becomes easy and plentiful, you could get your health outside of a range where you wouldn't be eligible for it if that was Yeah.
Piotr Witkowski, MD, PhDYeah.
Yeah.
And and and and you will not even if you get it, you will not benefit, know.
Scott BennerRight.
Piotr Witkowski, MD, PhDThe way you could, you know, without secondary complications.
Scott BennerMhmm.
What do you consider a cure?
Like, what would you be comfortable not saying functional cure or this is better than it was before?
No.
Piotr Witkowski, MD, PhDI mean, I would think the same way as as as most people think that, you know, take a one magic pill or one magic injection infusion, whatever it it is.
And be sure that I will never had diabetes anymore, and it will never come back, and I don't need have to worry about some side effects.
Right?
So so in my mind, this is cure.
Right?
So I'm I'm a surgeon.
Right?
So if I remove the gallbladder, I know there will be no gallbladder disease For hundred percent, there might be other problems in the disease, but no disease.
So yeah.
No.
In my mind, the ultimate cure is something which can reverse diabetes in the consistent way forever without any side effects.
Scott BennerRight.
And that's what a cure is to you.
Piotr Witkowski, MD, PhDYeah.
Scott BennerYeah.
I agree.
Piotr Witkowski, MD, PhDBut then I'm sorry.
But I don't want to diminish what patients are saying.
Right?
They feel cured because they were diabetic with all the downside of this, and now they don't have diabetes.
And today, they feel cured, but they fully understand that tomorrow it may come back.
Right?
So but they're just describing the moment of happiness.
Scott BennerDo you think the work you're doing will lead to a broader understanding of the immune system in general and maybe help us to quell it to keep autoimmune issues down in people in general?
Piotr Witkowski, MD, PhDDefinitely.
Definitely, we would we can we can learn how to how to manage.
But to me, it's still hard to comprehend that in twenty first century, despite all those things, we don't know why autoimmunity happens.
Yeah.
And it's not only type one, any type of autoimmunity.
We don't know why people has Crohn disease, why there is theory.
There is, you know, this and that, but nobody can pin can pinpoint one one reason.
Right?
So I think this would be a major breakthrough if somebody will figure out why autoimmunity happens in the first place.
Because if we know the reason, we can prevent it rather than, you know, finding a cure how to reverse it.
Scott BennerYeah.
That would be lovely.
I talk to a lot of people every I mean, every day I record with somebody and and, you know, ask them about other autoimmune issues in their life or in their family line, and you can see it plagues families sometimes, you know, for all
Piotr Witkowski, MD, PhDdifferent Yeah.
Scott BennerYeah.
There there
Piotr Witkowski, MD, PhDis genetic factor for sure, but it's not only.
Scott BennerNot only.
No.
Of course.
Piotr Witkowski, MD, PhDThe best example in my mind is the ulcer.
Right?
The ulcer, this in the stomach for many, you know, thousands of years or hundreds of years, it's been the disease, untreatable.
And people were saying, oh, you have ulcer stomach because you're stressed.
Right?
Who is not stressed?
And people are trying to explain and treat it until the bacteria was suddenly discovered, which is causing this.
And we treat the bacteria, there is no ulcer disease.
I just hope that there's one thing which can be discovered and removed, and we don't have autoimmunity.
This is my hope.
Scott BennerRight.
Piotr Witkowski, MD, PhDI know people look into bacteria, viruses, and genetics, and diet, and and that, and and it doesn't look like it's a one single thing.
Maybe there is, and we cannot see it or find it yet.
Scott BennerMhmm.
I mean, it's it's interesting when you're trying to figure these things out.
I find it helpful to remember that we can use general anesthesia to put a person unconscious and that science doesn't understand exactly how it works.
That that that makes me some that puts a lot of things in perspective for me while we're trying to figure this stuff out.
You know?
Piotr Witkowski, MD, PhDYeah.
Yeah.
No.
No.
And and again, I I I'm in, you know, research and and medicine and stuff.
And the more I'm learning, the more I know that we don't know stuff.
Yeah.
The more we we we don't know.
Scott BennerCan I ask you a couple of bigger questions?
So you're how old are you?
Piotr Witkowski, MD, PhDI'm, how old I am?
57.
Scott Benner57.
How do you set your lab up so that your work continues on after you?
Is there a process in place for that, and how much of new AI models are you employing in the lab?
Those are kind of my two, like, questions about how you get to the end.
Piotr Witkowski, MD, PhDSo you see, I can do too many things.
Right?
I have to focus on something.
So my focus is clinical trials, execution of the clinical trials, optimizing clinical trials, and patient care, the patients who participate in clinical trials.
Mhmm.
So I do not work in, in my lab in basic I don't have a basic science research.
I don't develop, you know, something completely out of nothing.
The thing which will stay, I mean, after me is my experience Mhmm.
Based on patient treatment and adjustment in pay.
We're learning every days.
We are yeah.
New things about it.
And my role is to, you know, share with others, publish, and so that others can can benefit and take it to the next level.
Scott BennerYou're sort of a an artistic mechanic.
You take the parts that are available right now in the world, and you go into the machine and do your best to put it back together.
Piotr Witkowski, MD, PhDYeah.
Exactly.
Scott BennerYeah.
Yeah.
That's interesting.
Do you think that there's a way to pass your knowledge on to other people?
Do you have, like, people working with you who are learning from you?
Piotr Witkowski, MD, PhDOh, yeah.
Yeah.
Definitely.
This is especially in surgery, this is how he's been, you know, traditionally that we learn from our mentors, especially in surgery because, you know, there's a lot of details which is not in the books, you have to see and experience, and you learn a certain way.
And it's funny.
When when I was learning from my mentor during my fellowship how to do the kidney transplant, he was obsessed with the details.
Mhmm.
And I was always like, come on.
We can do a different or easier way.
Every time I deviated from his technique, his, you know, elements of the surgery, every time I got into trouble.
And I was developing discovering, oh, that's why he was doing this way.
Right?
Yeah.
He already went through this and optimized this procedure, and to me, it was that without any sense why he's doing this until I learned hard way that this was just based on the experience of he say, oh, personal experience, and I guess his mentor.
Scott BennerRight?
Yeah.
Yeah.
Piotr Witkowski, MD, PhDSo so so I'm going back, and I'm teaching my fellows in obsessed way.
I'm telling you, do this way.
You can choose your way, but I'm telling you this is better.
And you can do what you want with that.
Scott BennerIt's a classic parenting problem.
How do I get them to just believe me and move on?
Piotr Witkowski, MD, PhDThey need to get burned at least once.
Right?
Scott BennerThat just seems to be the human way.
Yeah.
Yeah.
To the artificial intelligence, do you have a feeling that it can move the understanding we have of how medications work or what we're seeing in labs?
Like, do you think it'll speed it up?
Is the bottleneck human beings somehow?
Piotr Witkowski, MD, PhDI think so.
I think so.
I think it will it provides additional tool beyond our comprehension.
This AI has has enormous power better than our brain so they can discover some connections which we don't see or cannot see.
So so definitely, it has potential to to extend the our vision,
Scott Benneryou know,
Piotr Witkowski, MD, PhDvision where we are and where it can be.
Scott BennerYeah.
I'm excited for that really to for us to be able to dump the collective knowledge of this kind of thing into one place and have something considerate that is maybe more likely to consider something we haven't figured out before or be able to think it through to a different end or something like that.
Piotr Witkowski, MD, PhDAnd there will be always people who will look outside the box and discover something by chance or by mistake.
Right.
And and and this is great.
Right?
This is this is the nature.
Sure.
Or discover something by chance.
But having this this special power of analysis beyond our regular, you know, power, this is this is amazing, and I think it will be helpful.
Scott BennerYeah.
Also, not having to eat, sleep, go home, talk to your spouse, take care
Piotr Witkowski, MD, PhDof your
Scott Bennerkids, like all the other things.
Right?
Piotr Witkowski, MD, PhDYeah.
Yeah.
The Cost and Realities of Clinical Trials
Scott BennerCan I ask you?
You said how ex that it's expensive to do the procedure, and you only have so much money to do so many.
Is there a way to generally tell me what the bill is on doing one of these for somebody?
Piotr Witkowski, MD, PhDYeah.
If you count everything.
Right?
Everything.
Like, if there is a program which want to start doing transplants and support the facility, the personnel with one source of money.
Right?
It's a lot of money.
So and, of course, the more you do, the cost per procedure is lower, right, because of the a lot of common costs.
800,000.
Scott BennerOkay.
Piotr Witkowski, MD, PhDThis is the for one trial one patient.
Scott BennerAnd that would cover everything Everything.
Soup and nuts.
Piotr Witkowski, MD, PhDAnd everything.
Right?
Yeah.
So if there is a center who wants to start running the program and do 10 transplants, they need 8 millions.
Scott BennerJeez.
That's something.
That's a lot to go going.
Piotr Witkowski, MD, PhDEvery because if you think about it, everything cost, and it's not only people, it has to be clinical grade reagents.
And they cost 10 times more than regular reagents.
Right?
Mhmm.
And then and then there has to be oversight, quality control, and there is so many elements.
Cell processing, and then in patient care, and then hospital, and then the medication are extremely expensive.
Right.
So this is all adding up.
But, again but I'm not saying that this is how much insurance should pay for one transplant.
This is not what I'm saying.
Because then, again, if you do more, the cost is lower and stuff.
Right?
I'm just saying for somebody who is starting and and and or doing on the small scale This is how you need this money.
Yeah.
To do to do a few patients.
Right.
To do a few patients.
Scott BennerIf you wanna open up your own McDonald's, this is what's gonna start to get it going.
Yeah.
Yeah.
Yeah.
And and to do and to do 10 patients.
Piotr Witkowski, MD, PhDRight.
So So your your your first hamburgers will cost a $100.
Scott BennerRight?
Right.
Yeah.
And eventually, you'll get it down to to scale.
Piotr Witkowski, MD, PhDYeah.
Yeah.
Eventually, you can you can take everything down and yeah.
Scott BennerYou have how many people on the trial right now?
Is yeah.
Are you on your thirteenth right now or you up to 12?
Piotr Witkowski, MD, PhDNo.
So so we got funding only for 12 patients.
Scott BennerOkay.
Piotr Witkowski, MD, PhDWe could do more, but the funding is was 12, and we transplant 12.
Scott BennerOkay.
Piotr Witkowski, MD, PhDWe are waiting for ethics committee, our IRB approval to start the second trial sponsored by breakthrough t one d for 10 patients, type one diabetes with kidney dysfunction with tegoprova.
Right.
So today, because of tacrolimus toxicity nephrotoxicity, we cannot do patients with kidney partial kidney dysfunction because then we will kill their kidney completely.
Mhmm.
So we cannot help patients with kidney dysfunction today at all.
So those poor patients, they have poor diabetes, and they have already kidney dysfunction, and they cannot get pancreas or islets transplant at all.
So this will be first time because of no toxicity of tegoprobar that we will be offering this group of patients islet transplantation.
We hope that the reversal of diabetes will stop the progress of the kidney disease.
And who knows?
Maybe it will reverse.
Maybe the kidney function will improve as it's been suggested by by some scientists.
Scott BennerInteresting.
Piotr Witkowski, MD, PhDSo this is coming for 10 patients.
Yeah.
Scott BennerYeah.
The first round is about proving it out in relatively healthy, you know Right.
Specific candidates.
Now you're gonna
Piotr Witkowski, MD, PhDrelatively healthy kidney and other elements.
Right.
But still with the hypoglycemia unawareness and severe hypoglycemia.
Scott BennerMhmm.
Then you move on to a a different group of people who have another issue.
If it works with them, then that's even more
Piotr Witkowski, MD, PhDexciting.
Proof that we can reverse diabetes in consistent way, more consistent than before.
Because before with tacrolimus, depending on the center, eighty percent of patients were 60 of patients were completely off insulin.
So the benefit was to prevention from hypoglycemia.
But once we prove that we can reverse everyone Mhmm.
For at least one year, then we I think we can offer the the procedure to patient without hypoglycemia unawareness.
For example, with a one c over seven, when we know that the the they have a higher risk of secondary complication and reversing diabetes will be beneficial for them even if there are some potential side effects from immunosuppression.
Eligibility and Managing Expectations
Scott BennerWhat's the youngest person you've helped so far?
Piotr Witkowski, MD, PhDSo yeah.
So we have two we have, you know, one patient in the study who is 19, and I have another 19 year old.
So the problem with teenagers is that they usually, you know, they not compliant with oral medication.
Right?
So you do transplant.
They're doing fine.
You ask them to take pills, and then they decide not to do it.
And they have rejection.
They're losing.
So, traditionally, we wait until 26 and older when they're mature, and we can rely on them taking the medication.
Now this this specific patient has a tremendous family support.
And also what convinced me that this tegopropart is IV.
So I'm rely I'm relying that the family will bring bring the patient to us, and and the patient will be safe getting the medication in the right way.
Scott BennerAnd if they're not there, you'll know they're not there.
You can get them there.
Piotr Witkowski, MD, PhDRight?
Then we know if something is wrong, we are alarming patient with the parents and and stuff.
So the fact that this is IV, and it's a it's a main medication, and there's, you know, devoted parents.
And the patient is also dedicated.
Don't get me wrong.
Yeah.
Scott BennerHe has the support structure.
Right?
He's not college student somewhere living in a dorm somewhere alone without Mhmm.
Supervision, and and then he may he may just just lose it.
Piotr Witkowski, MD, PhDRight?
So so so not yet.
Scott BennerAs much as that is about their health, it's also about you and your trial and getting back the information that you need.
Piotr Witkowski, MD, PhDYeah.
Yeah.
No.
Of course.
We want good outcomes.
But what really pushed me was that this particular patient had no life.
He because of severe hypos and poor glucose control, he had no social life.
He didn't go to college.
He's just sitting at home with no life.
Yeah.
So the life was so severely compromised that that I decide to to help him and and, you know, his parents and him.
And
Scott BennerIs the tego pro bart, is it eligible to be used in children, like, or
Piotr Witkowski, MD, PhDis I mean, no.
No.
No.
It's still under development.
Okay.
So in gen as a general rule, the medication are tested in adults first.
Scott BennerOkay.
Piotr Witkowski, MD, PhDAnd once they approve in adults, then depending on the profile and risk benefit, they can be, you know, considered for children testing in children.
Yeah.
But it's a it's a separate path, separate testing after approval for the adult.
Scott BennerAnd that's a time in the future.
But for you personally, have you seen enough to feel comfortable using it in kids, or have you not seen enough yet?
Piotr Witkowski, MD, PhDNo.
Not yet.
No.
I have to highlight that as much as we have great preliminary results, it's still under rejection medication.
Yeah.
So we don't have toxicity on daily basis, which we see with other medication.
But there is still potential for skin cancer in the long term.
The long term overall immunosuppression side effects, which is the skin cancer or the the blood disease like leukemia.
So, no, there is still potential risk in the future.
And until we don't have real experience and data, definitely, we shouldn't go to children.
Scott BennerYeah.
I ask you some of these questions just so the people listening can understand.
Piotr Witkowski, MD, PhDThe people are.
No.
No.
We're having, you know, emails every day from desperate parents and asking when and how because they're desperate.
We understand this.
But but the message is it's not for children yet.
Eyelid transplantation, yeah, is not for children because we're using toxic immunosuppression.
Scott BennerRight.
Piotr Witkowski, MD, PhDAnd then, it's not justified yet.
The Human Element of Clinical Trials
Scott BennerTaking the science out of it for a second, can you tell me a little bit personally how it feels to see somebody have this burden lifted from them?
Piotr Witkowski, MD, PhDOh, this is amazing.
This is what's driving all of us entire our team, you know, when we best reward is when we can tell patients you can stop the the pump.
And I don't know if you saw the post from yesterday because we stopped the part the the the insulin on on patients few days ago.
And every time is the same is the same excitement when they telling us, you know, some patients, they they were one year old.
They don't they don't know life without insulin.
Scott BennerSure.
Piotr Witkowski, MD, PhDAnd and suddenly, they can live without.
And one of the first patient when we told her, she was, like, 57, all life diabetic, and we told her she was so so emotional about this, and we were then we will let her go.
And she was running on the stairs, she fell, and she broke her arm.
So we felt so bad about it, and we blame ourselves that
Scott BennerShe was so excited she fell?
Piotr Witkowski, MD, PhDThat she was yeah.
She was so excited that she fell and she broke her arm and she needed surgery.
Scott BennerOh.
Piotr Witkowski, MD, PhDSo we decide to keep the patient in the bed, in the room for some time or tell them over the phone.
Scott BennerOne of those, is everybody sitting down?
Yeah.
Yeah.
Yeah.
Piotr Witkowski, MD, PhDSitting down and and then sitting down for a while and not just let them go right away.
Yeah.
No.
No.
I mean, on the one hand, telling patients over the phone, it's a safe way to do it.
Mhmm.
But then we're missing the, you know, the celebration and the the excitement.
And and it's all it's rewarding for our entire team because I don't know if you know, when we bringing the the pancreas, the seasonal pancreas to us, it usually arrives midnight, 1AM, 3AM, 4AM.
And my team is working usually at night, isolating whole night, eight hours, ten hours, sometimes two pancreas in a row.
So so there's a lot of dedication in the team.
Yeah.
And they do on they do it on weekends as well.
When the good organ comes, we are twenty four seven, and these are the same people.
I have only one team.
So there is a lot of dedication here, but but, again, it's all stimulated by by seeing our patients happy.
And that's why that's why we share our our joy with others.
And then what was triggered at the beginning was that I understood that the general perception of Eyelis transplant is that they don't work.
They just hurt patients, and we shouldn't do it.
That's why we start posting that this is not true, and it can be helpful, and it it can be a path for better therapy or cure in the future.
Scott BennerI can't imagine how busy you are.
You and I have been scheduled to do this since November, and it's it's April 1.
And November, December, January, February, March yeah.
Piotr Witkowski, MD, PhDNo.
Don't be
Scott Bennerdon't be sorry.
Piotr Witkowski, MD, PhDSomething.
Right?
Scott BennerYeah.
Know.
But I'm just saying there's a varied nature and a and a hurried nature to what you're doing, and it's a lot of effort.
I genuinely appreciate it.
I'm sure everybody listening does too.
Advocacy: How You Can Help
Scott BennerCan I ask you, is there something who people are politically minded?
Is there something that they could do or you need them to do to help with these cells and their availability, or is that being taken care of by the lobbying that breakthrough is doing?
Piotr Witkowski, MD, PhDThe breakthrough is doing.
Right?
But, but it's not done deal yet.
Right?
So so so definitely, we've we've been voicing our concerns to FDA first now to HHS directly.
In the meantime, since we didn't get attention, we couldn't get attention, we reach out to senators, and senator Mike Lee responded.
But now the the shortest path is through HHS.
And there is some attention, but it's just the beginning.
So Right.
I think, you know, if people can express support for what we're asking for for regulatory adjustments so it can be done safe and effective and available to to patients, this will definitely help.
Scott BennerI see.
That's excellent.
Piotr Witkowski, MD, PhDBecause HHS are are watching watching social media, watching what's going on.
Today, we don't live in vacuum.
I mean, for me, I knew social media is powerful, but I never thought that this will be the the the breakthrough through social media.
Scott BennerYou didn't think you'd be a guy being on podcast.
Piotr Witkowski, MD, PhDWe wrote papers for five years.
Yeah.
And we were writing about this for five years, and it's like any other news.
I mean, nobody's seen it.
Scott BennerNobody
Piotr Witkowski, MD, PhDpaid attention.
But now there is attention, and it's a good moment to to have it fixed.
Scott BennerThat's excellent.
Well, I wanna say that I have been for well over a decade when people would ask me why are you supportive of JDRF and now breakthrough t one d?
I would always say, am very excited about having an entity with lobbyists Yeah.
In government to know how to get to people.
Like, I think that's incredibly important.
I'm glad to see I was right because Yes.
This is fantastic news.
Piotr Witkowski, MD, PhDNo.
Definitely.
Definitely.
There is a gap, and they're filling the gap, and they it's critical.
It's critical to have stuff done in the right way.
And and Breakthrough t one d, it's it's a great advocate for this, and and we hope that this this issue will be also resolved.
Scott BennerCan I ask you a question that I'm sure some people listening are asking?
Why didn't you just leave America and do it somewhere else?
Piotr Witkowski, MD, PhDSo first of all, the America I mean, we in America have amazing infrastructure.
Mhmm.
So my advantage over European countries is that I, doing this, I have all deceased donors in the country available with, you know, over, what, two nearly 300,000,000 people.
I have so many organs available.
And living in Chicago, we have infra that you have flights.
We can bring the we have to bring the pancreas within twelve hours.
And living in Chicago, I can bring the almost from everywhere
Scott BennerOkay.
Piotr Witkowski, MD, PhDWithin twelve hours here.
So I have huge number of donors, which they don't have in the small small countries.
So I can do much more.
And, you know, infrastructure is is here.
Yeah.
I'm from Poland, so I help my university to develop the program, IELTS program in Poland, but they have own limitations, so it didn't really take off.
Scott BennerOkay.
Piotr Witkowski, MD, PhDBut they had the chance to do it.
So each country has only limitation.
More some of them are more or less successful.
But I believe I mean, this is the best place to do it.
Scott BennerOkay.
Piotr Witkowski, MD, PhDOnce we have the right frame, we can do it.
And we were leaders in the field when we were doing the trials sponsored by by NIH and and JDRF.
We were leaders.
We were doing there were, like, eight centers in The States doing this 300 transplants.
We've been optimized I mean, we've been doing stuff, and we were teaching others.
It's just that once the trials were finished, there was no system for support.
Scott BennerOkay.
Piotr Witkowski, MD, PhDThere were no reimbursement and no more funding for research, and all the centers just closed.
People who had experience in this disappear, and and then we lost a lot.
We lost not only time, but experience.
So now we have to rebuild it.
Scott BennerWe'll build that again.
Piotr Witkowski, MD, PhDWe will be leaders again.
We just need this as chance.
Scott BennerI believe that.
You just said something that has a question in my head.
I don't know how much it fits here, but you said the pancreas is often come in late at night.
Is that because they're donors and people have accidents later in the evening?
Piotr Witkowski, MD, PhDRight.
Because the the organ donation happens in the regular hospitals
Scott BennerOkay.
Piotr Witkowski, MD, PhDUsually after hours.
Right?
So first, they are got the the elective cases goes, and then the procurement happens in the afternoon or or at night.
Scott BennerI see.
Piotr Witkowski, MD, PhDAnd then it arrives to us at night.
Scott BennerOkay.
So if health and human services makes this adjustment to how this thing is designated, you can move forward as quickly as there's nothing standing in your way anymore.
So this
Piotr Witkowski, MD, PhDI mean, we would need to talk to the insurance and, you know, show them the data and convince them to pay.
Mhmm.
The argument from, from medical chief medical officer of one of the insurance, when he saw the data, he's like, this is no brainer for me.
Patients are not in the ICU.
Stay in the hospital for three days.
Go home.
They back at work after one week without diabetes.
Yeah.
This is a no brainer.
Scott BennerCan you speak to the to the people out there who would say, well, they don't want us cured because they're selling us insulin and pumps and all this other stuff.
Can you explain to them why that's not the case or is the case in your opinion?
The tinfoil hat, can you can you tell them how to take it off?
Piotr Witkowski, MD, PhDOh, no.
No.
How I'm gonna say it.
I mean I mean, we all know there is a pharmaceutical business.
Right?
There is pharmaceutical business.
How it interacts with political decisions?
Yeah.
I want to believe that everybody wants the best for the patients.
Okay.
Scott BennerThere's part of me that that I should be wondering a little bit if this stalling for the last twenty five years isn't somebody else's lobbyist being better than our lobbyist.
Is that about right?
Maybe.
You're not that you maybe you don't wanna say.
I'm not sure.
Scott BennerYeah.
Piotr Witkowski, MD, PhDI mean
Scott BennerWe got somebody on our side.
That's what I should think.
Piotr Witkowski, MD, PhDFor some reason, we are here twenty five later.
Twenty five years later.
Scott BennerI see.
Yeah.
Okay.
Well, so then the people listening to this, I mean, the call to action here is to contact health and human services and tell them tell actually, say it again.
Tell me exactly what you would need from them to make this valuable for you.
Piotr Witkowski, MD, PhDSo I think my understanding is that that HHS should hear from everybody that this is the right thing to do, not only us physicians and experts in the field, from patients, from endocrinologists, from everyone Mhmm.
And that that this is what is expected, and we all believe that is the right thing to do.
And and their job is to analyze it and frame it in the proper way that we all will benefit from this.
Scott BennerYeah.
The benefit there is to the insurance companies because if they can get somebody off of all those devices and those and then then they don't have to pay anymore.
Yeah.
You just have to create a Yes.
A benefit somewhere else.
Piotr Witkowski, MD, PhDAnd then my my message is is that we're not gonna remove need for devices.
The insulin pumps, closed loops, getting getting better, and they're helping majority of the patients.
And we will treat still treat the minority Mhmm.
Of the patients.
So we're not replacing islets transplantation.
We're not replacing the CGMs and pumps yet.
No.
Not not at all.
We'd offer this today for all those poor deaf desperate patients who suffer despite using, and they don't have, you know, life normal life despite using the pumps.
Scott BennerHelp the people who are suffering the most.
And hopefully, we we learn something along the way that allows us to help more people easier.
Piotr Witkowski, MD, PhDYeah.
Yeah.
Definitely.
Scott BennerOkay.
Because the procedure you have right now, even if everybody was out of the way, you're not able to stand up and say, okay.
There's two million of you out there with type one diabetes.
Everybody get in line.
We're all done.
You know what mean?
Piotr Witkowski, MD, PhDRight.
Right.
Absolutely not.
Right?
This is what we hope for, but no.
No.
No.
Scott BennerWe're not there.
Piotr Witkowski, MD, PhDI'm telling you, if we do a transplant, a thousand transplants a year
Scott BennerThat would be amazing.
Piotr Witkowski, MD, PhDI would be happy.
Right?
Of course, it may change.
Right?
Yeah.
Of course, it may change if suddenly we start doing a thousand and we optimize.
We develop new technique of isolation.
We figure out many different things.
It may it may scale up.
Right?
But we don't have it today.
I can't promise anyone that we will do, you know, unlimited amount.
Definitely not.
Scott BennerSomething almost unforeseen at this moment needs to change before you can scale like that.
Mhmm.
Okay.
Piotr Witkowski, MD, PhDOh, yeah.
Scott BennerYeah.
Yeah.
Piotr Witkowski, MD, PhDYeah.
So changing the regulation is the first step.
First step.
And and then it will be right environment and framework for people to do stuff.
Right?
And then we'll see.
Because if the stem cells therapy comes soon, right, we're not gonna have time to scale up disease donors.
The let's say, Vertex cells will will replace them.
They will be better, available, more consistent, and and available right away.
Scott BennerWell, that's very it's valuable.
And it it's important to me to to be very just transparent and honest with people because like I said, I Oh,
Piotr Witkowski, MD, PhDyeah.
Yeah.
Yeah.
No.
The I
Scott Bennerthink it's fantastic that people are sharing their stories.
I really enjoy seeing it.
But for everyone like me who sees it and says, that's amazing.
I think that's a great step, but we're not that that doesn't mean that three weeks from now, it's over.
Piotr Witkowski, MD, PhDNo.
No.
No.
For
Scott Bennerevery person Absolutely.
There's a lot more people out there who see that and just think, oh, gosh.
Piotr Witkowski, MD, PhDAs and if you look even this, you know, we're using tegoprobot in ten, twelve patients, but this is gonna take years again before tegoprobot is approved for everyone.
Scott BennerRight.
So And that's on the other thing.
Piotr Witkowski, MD, PhDHappens overnight.
It's just the beginning, and and and it's a good beginning.
Sure.
Scott BennerSure enough.
Piotr Witkowski, MD, PhDAnd the progress with with people I mean, with disappointment comes that they heard that in five years, we're gonna do this on that, or we're gonna get somewhere.
The progress, it's never linear.
Right?
It's not one line going up.
It's just like a step.
Yeah.
You're trying, trying, trying, and then you take a a step up.
Right?
And but you don't know when is your next step.
Scott BennerRight.
Piotr Witkowski, MD, PhDThere is a hope that we that the steps will be, you know, on a regular basis to get to the heaven Yeah.
In five years, but this is not how it works.
Scott BennerIt's not how it works.
Well
Piotr Witkowski, MD, PhDAnd I can't believe it because, you know, I've been I've been I've been here in this country and involved in Ireland for last twenty six years, and it's like yesterday.
Right?
So you you you're saying in five years, but how many five years I already haven't seen the progress.
Scott BennerSure.
Well, they've been telling people they've been telling people five years for fifty years.
Yeah.
Yeah.
I always imagine it's because the person working on at that time actually really is hopeful and thinks they see a an end to it.
I also think they probably want their research funded, so you say positive things while you're doing that.
Piotr Witkowski, MD, PhDOh, yeah.
No.
This is another thing that that people and companies, they they need the funding, and they sometimes exaggerate.
Right?
Scott BennerRight.
Piotr Witkowski, MD, PhDAnd people reading this, they really think and the one one thing just came to my mind, which is also related, is that when in in 2000 in the year 2000, when Edmonton group, they described seven patients of insulin for one year after eyeless transplant.
All of them of insulin.
Right?
Mhmm.
Is the moment when expectations were like, oh, come on.
This is what you say.
Oh, we have it.
Scott BennerYep.
Piotr Witkowski, MD, PhDOh, now now we're gonna roll.
Right?
In five years, everybody.
But then the immunosuppression was not sufficient, and they were gradually losing the insulin independence.
And and that's this is when the disappointment came.
Few years later, they were not more anymore.
Only only 7% were on the of insulin.
Right?
So people were saying, oh, no.
No.
You see?
I listen no.
I listen to
Scott Bennerwork and stuff.
Yeah.
Piotr Witkowski, MD, PhDBut this was all about the expectation.
The expectation were huge when it happened, and then it didn't meet the expectation, and then there was a huge disappointment.
Scott BennerAnd sometimes time just has to pass and different minds have to get set on problems and
Piotr Witkowski, MD, PhDRight.
But setting the expectations is important.
Right?
So when we talk to the patients, I'm I'm promising that we will work hard to get them there.
I can't guarantee that we will get them with every patient because every patient is different and and and and and some unexpected thing happen.
But I'm promising that we will work hard to and do everything we can to keep them safe and and get them off insulin.
But, but sometimes it's too much for some patients.
Right?
The the amount of adjustment and and oversight and going to the labs and this and that and experiencing complications, sometimes it's too much.
And they're saying, no.
No.
No.
This is too much for me.
Yeah.
So we are warning that this is a commitment on both sides, and it would require and you see, even the first patient from Tecoprubar, I don't know if if you've seen my presentation.
So the first patient was off insulin, and then she decided this is too much for her, come to Chicago every three weeks.
Mhmm.
And then she decide to switch to tacrolimus knowing that it's more toxic.
But regardless, traveling to Chicago was too much for her, which she didn't know before.
Yeah.
And you would think, come on.
I mean, you are off insulin.
You really want to risk being diabetic anymore?
But for her, it was too much.
It was too
Scott BennerAnd why could you not do the infusion where she was?
Piotr Witkowski, MD, PhDBecause this is experimental medication.
It has to be given here for the safety.
Scott BennerOkay.
Piotr Witkowski, MD, PhDIn the future, once it's approved, as we discussed, it can be infused at home.
It can be given sub q.
Definitely in the future, but not yet.
Scott BennerNot yet.
So almost like when I go get a an iron infusion, I go to an infusion center.
There are people there getting all different kinds of medications at that time.
Piotr Witkowski, MD, PhDYeah.
And then I don't know about the iron, but we have another medication, belatacept, which we're using in a which is approved medication, and then patients are getting them either in infusion center, as you said, or at home.
And then just come come to patient home, put IV, one hour infusion done.
Scott BennerI see.
Piotr Witkowski, MD, PhDSo we have similar medication, belatacept, which we which we use as well outside this trial for for our different trial, and it's it's working as well.
But the tacrolimus is given just in the lower dose.
So this medication cannot replace tacrolimus.
Can I mean, allows to lower the dose and minimize the side effects?
So, like, halfway what the the goprobar is allowing for.
Scott BennerAre you looking for trial participants right now, or do you have your next group?
Piotr Witkowski, MD, PhDNo.
No.
So so we look we're still looking for patients with kidney dysfunction.
Scott BennerHow can they get ahold of you?
Piotr Witkowski, MD, PhDSo on our website, there is a there is a link to the Eladon, the GoPruvat study, and they can follow the prompts to enroll into the study.
There is a questionnaire.
Mhmm.
They can fill up the questionnaire, and there is instruction where to send the questionnaire.
My nurses are reviewing every questionnaire, and they segregating the patients, those with normal kidney function and kidney dysfunction.
And we will be inviting patient with kidney dysfunction one after another until all the spots are filled, but we still have open spots.
Scott BennerAnd don't lie.
They can tell.
They're gonna check.
So Right.
No.
Piotr Witkowski, MD, PhDI mean I mean, again, it's it doesn't help because if they if they lie, they come here and the result is here.
So we cannot qualify patients with the results outside the range.
Scott BennerWhat's that web address?
Is it is it actually pwackowski.org?
Piotr Witkowski, MD, PhDYeah.
Yeah.
Yeah.
This is the website.
Scott BennerOkay.
I'll put it I'll put a link in here for you, see if we can get you those people.
Mhmm.
Yeah.
That that would be awesome.
Is there anything that I should have asked you about that I didn't?
Anything that you'd like to say that I just didn't get to?
Piotr Witkowski, MD, PhDIt was really comprehensive.
It was really good, and I appreciate everything you're doing promoting, you know, everything for for patients with type one diabetes.
Scott BennerThank you.
Piotr Witkowski, MD, PhDAnd and giving us a chance to to tell patients about about us.
I think, again, I'm not our patients, they posting what they feelings.
Mhmm.
It's not moderated by me.
I'm not involved what they're saying.
I'm not clarifying.
I'm not because I I don't think it's yeah.
So there might be, you know, some misunderstandings and stuff.
And at the end of the day, you know, we, you know, we are providing comprehensive information.
But the the bottom line is it is still anti rejection medication.
It's just less toxic than everything else we used before.
Mhmm.
And the patient tolerated tolerating this much better than everybody before, and the outcomes are better than every everything before.
But it's all preliminary all preliminary, and it's not final.
So we're still evaluating this.
Scott BennerBut a lot of reasons to be excited.
Piotr Witkowski, MD, PhDOh, yeah.
Oh, definitely.
No.
No.
We are so we are so excited.
Right.
And especially, I want to highlight that we as a scientist, we're testing new things.
And then often, it doesn't work.
Right?
So there is a lot of stress and and and disappointment on patient's side and our side.
Mhmm.
But this time, we are just lucky that the staff which we the approach which we testing is working better than anything else.
So this is this is extremely rewarding, stimulating.
And I don't know if you if you've seen the documentary, the the human trial.
Scott BennerI know of it.
I have not seen it.
No.
Piotr Witkowski, MD, PhDYeah.
I I I highly recommend it to to everyone to watch it.
It's a documentary about the patients who who participate in the ViaCyte stem cells islets transplantation trial when the stem cells islets were implanted in the plastic pouch and abdominal wall.
Mhmm.
But but the documentary is made by the director who is also type one diabetic, following the camera not only medical team, but patients at home.
And it allows us to better understand all these emotions and and everything related to to be a participant in the study.
Sure.
And it didn't work.
It didn't work.
So the the documentary shows, you know, the the pain, right, and disappointment.
Although they all highlighting the patients and physicians.
Yes.
Physicians told us it may not work.
We knew it may not work, but they still, you know, sacrifice years of laughs, of dry of emotions, and and and then and they it shows disappointment.
It shows disappointment that it may not be successful.
Scott BennerPeople's kindness supports this a lot.
I had a a woman on one time.
She I think was it Veritex, the one pouch or Viacyte?
Maybe.
I'm not sure I remember.
She was in a trial.
They couldn't even tell her she was for sure getting actual stem cells.
They just they needed to do it was a blind it was double blinded.
Piotr Witkowski, MD, PhDIt was blinded.
So She
Scott Bennerstill did it to help, which I thought was amazing.
Piotr Witkowski, MD, PhDIn this trial, they were not telling them if there is NSC peptide, if the islets are working.
They were not telling them.
Yeah.
So they were guessing.
Right?
And seeing those emotions, like, I feel like islets are working.
Oh, I feel better.
I feel but the uncertainty is still is still not allowing them to celebrate.
Scott BennerRight?
Sure.
Piotr Witkowski, MD, PhDAnd at the end, they learned that there's nothing.
Nothing works.
This was this was the hard part.
Right?
So I'm glad that we can tell patients, where they are, what's going on, and what they're getting, and and we can share it with others and and and go together along the way.
So
Scott BennerYeah.
So this is You threw something against the wall and it stuck.
Yeah.
That's awesome, Mike.
Piotr Witkowski, MD, PhDI can give you I can give you another example.
Scott BennerPlease.
So we've been testing, the Eilish transplantation into the the Cervova pouch, which is a a new experimental, and we were not sure if it's if it's gonna work.
Mhmm.
And patients require surgery, implantation, explantation, several surgeries.
So we were aware that this requires a lot of sacrifice.
So I was able to convince the the funding agency and the sponsors to add additional transplant into the liver if regardless, if the islets and the pouch doesn't work so they can get the benefit of participation in the study, but being off insulin with the islets and the liver.
And and then, and this is what happened.
The the results in the pouch were, you know, suboptimal, and they all received the islets and the liver, and most of them are off insulin enjoy enjoying the living without the without this.
Right.
Piotr Witkowski, MD, PhDAfter the sacrifice.
So this is what we learned from this documentary.
Right?
That we should provide patients more benefit rather than just telling them, I'm sorry.
It didn't work.
Scott BennerYeah.
No.
The living with diabetes is already a lot of mental and physical stress.
You don't need extra, you know, especially when in this situation.
Well, I I wanted to thank you too.
It was nice of you to say that the conversation was comprehensive, but I wanna mention that listeners of the podcast sent in a lot of questions for you, and I synthesized those questions down into the the road map that we followed today when we were talking.
And you were lovely to come on.
You weren't you did not have these questions ahead of time.
You're just sitting there listening and answering, and I thought you did such a wonderful job of outlining what all this is and and what it isn't.
I definitely feel very good about about the direction and and moreover that you're in charge of it because your passion and time, it looks like it's really starting to pay off.
And I I can't thank you enough.
You don't know this about me.
I don't have diabetes.
My daughter will be 22 this summer, and she was diagnosed when she was two, and she has type one.
Piotr Witkowski, MD, PhDOh, I'm really sorry.
Scott BennerThank you.
I appreciate it.
She's doing well, but I but I really do appreciate it.
Piotr Witkowski, MD, PhDBut no.
But, yeah, we all know how much, you know, how much work and how how challenging how much harder is life, basically.
Scott BennerIt really does reshape your life in a way that you would like for it not to have.
That that's for certain.
Piotr Witkowski, MD, PhDBut one more thing if I can share with you.
Please.
So all the patients when we telling them, now you're diabetes free, you're insulin free, go and enjoy your life.
Right?
Mhmm.
So they're happy.
Right?
But the next day they come, they're not happy.
I'm like, what's going on?
Oh, I have problem with my car.
I'm like, so so this happiness, which I thought gonna stay forever.
Right?
No.
These are regular people who has regular pro problems, and they have just new problems.
Right?
And and they're manageable problems.
Of course, they have perspective.
Of course, they do remember how life was miserable before.
Actually, many of them are forgetting.
And I and it's funny when I'm when I'm observing some of the patients when they when they're giving interviews, when they're being asked how was the life, they it's became, like, so distant.
They're not getting into details anymore.
Scott BennerDoctors like, listen.
Maybe I'm working too hard here.
I don't know.
Piotr Witkowski, MD, PhDI mean, one message is that that, you know, we you know, everybody has own problems.
Eventually, if it's not diabetes, there are other problems.
And then people what I also learned that people with diabetes Mhmm.
They more resilient after after that.
I mean, after being off insulin, they're also you know, the the regular life challenges are not not as stressful for many of them.
I But for for some of them, they they are.
Scott BennerComes right back.
I have to tell you doctor, I feel like I have the perspective of a 200 year old man.
Like, you know, seriously, like, my daughter being two years old and being diagnosed was was really through
Piotr Witkowski, MD, PhDa lot.
Scott BennerYeah.
It's something else.
And for her too, I she she sometimes seems to have the wisdom of somebody three times her age.
Piotr Witkowski, MD, PhDYeah.
And then I I can't even imagine how hard it is, you know, having a a child with diabetes.
It's challenging for others, but for children and
Scott BennerRight.
Piotr Witkowski, MD, PhDYou know, childhood, teenager, I mean, it must be.
Scott BennerWell So I'll say this.
This podcast exists because I taught myself how to manage insulin, and it turned out that it worked really well for her.
And then I realized that I had a way of communicating that information that allowed other people to just hear it and then kind of replicate it for themselves.
And this podcast over the last twelve years has close to 22,000,000 downloads.
Piotr Witkowski, MD, PhDWow.
Congratulations.
Scott BennerYeah.
Thank you.
And I'll tell you right now, the the feeling you get when you hear somebody say, you know, my a one c's in the fives or I haven't been in
Piotr Witkowski, MD, PhDlove you.
Scott BennerOh, it's it's just wonderful.
Right?
But at the same time, they do disappear.
They stop listening, you know, because they go they go back to their lives.
And and in the end, you know, what I wanted to share with you about it was I've come to think of that as, like, graduation, and I'm happy when when they're gone.
You know what I mean?
So Yeah.
Yeah.
Yeah.
Yeah.
If I was you, I'd be thrilled that they're worried about their car and they're upset about it.
Piotr Witkowski, MD, PhDOf course.
Of course.
Of Of course.
Yeah.
It was just surprise to me.
But I'm saying it was surprise which I I learned that yeah.
No.
This is and this is all of us.
I mean, when you're sick, your sickness is the most important.
Once you are healthy, you you can just Yeah.
Have other problems.
Right?
Outro & Resources
Scott BennerYeah.
Well, it's nice that they don't have to worry about it anymore.
Who you know, you you can't control what happens next.
Yeah.
I will say this.
This was fantastic.
If the people from Eladon are listening, and I'm sure you are, I would love to interview you too.
And if you ever wanna come back or you have new news, you are you're welcome back here anytime.
You please just let me know.
Piotr Witkowski, MD, PhDThank you very much.
I really appreciate it.
Scott BennerAbsolutely.
I
Piotr Witkowski, MD, PhDappreciate be opportunity to meet again with something exciting to share.
Scott BennerYeah.
Will you be at ADA?
Piotr Witkowski, MD, PhDYes.
I think I was invited to give it to update on on the study.
Yes.
Scott BennerI'm gonna find you and say hello.
I'll be there.
Piotr Witkowski, MD, PhDYeah.
Let's let's let's meet.
Scott BennerThat would be lovely.
Lovely.
Absolutely.
Okay.
Go ahead.
I'm sure you have a thousand things you haven't been doing while you were talking to me.
Piotr Witkowski, MD, PhDThank you.
Scott BennerThank you
Piotr Witkowski, MD, PhDvery much.
Scott BennerTake care.
Having an easy to use and accurate blood glucose meter is just one click away.
Contournext.com/juicebox.
That's right.
Today's episode is sponsored by the Contour NextGen blood glucose meter.
I'd like to remind you again about the MiniMed seven eighty g automated insulin delivery system, which of course anticipates, adjusts, and corrects every five minutes twenty four seven.
It works around the clock so you can focus on what matters.
The Juice Box community knows the importance of using technology to simplify managing diabetes.
To learn more about how you can spend less time and effort managing your diabetes, visit my link, medtronicdiabetes.com/juicebox.
Okay.
Well, here we are at the end of the episode.
You're still with me?
Thank you.
I really do appreciate that.
What else could you do for me?
Why don't you tell a friend about the show or leave a five star review?
Maybe you could make sure you're following or subscribe in your podcast app, go to YouTube and follow me or Instagram, TikTok.
Oh, gosh.
Here's one.
Make sure you're following the podcast in the private Facebook group as well as the public Facebook page.
You don't wanna miss please, do you not know about the private group?
You have to join the private group.
As of this recording, it has 74,000 members.
They're active talking about diabetes.
Whatever you need to know, there's a conversation happening in there right now.
And I'm there all the time.
Tag me.
I'll say hi.
When I created the defining diabetes series, I pictured a dictionary in my mind to help you understand key terms that shape type one diabetes management.
Along with Jenny Smith, who, of course, is an experienced diabetes educator, we break down concepts like basal, time and range, insulin on board, and much more.
This series must have 70 short episodes in it.
We have to take the jargon out of the jargon so that you can focus on what really matters, living confidently and staying healthy.
You can't do these things if you don't know what they mean.
Go get your diabetes defined.
Juiceboxpodcast.com.
Go up in the menu and click on series.
If you have a podcast and you need a fantastic editor, you want Rob from Wrong Way Recording.
Listen.
Truth be told, I'm, like, 20% smarter when Rob edits me.
He takes out all the, like, gaps of time and when I go, and stuff like that.
And it just I don't know, man.
Like, I listen back and I'm like, why do I sound smarter?
And then I remember because I did one smart thing.
I hired Rob at wrongwayrecording.com.
#1816 Bolus 4 - The Movies
Going to the movies doesnt have to be a disaster. Jenny and Scott bolus 4 the snack bar.
Companies that Support Juicebox
Key Takeaways
- Estimate by the Handful: If you don't have nutrition facts, a good rule of thumb is that one handful (or one cup) of popcorn contains about 5 grams of carbohydrates.
- Portion Control is Key: In a dark movie theater, it's easy to mindlessly eat handful after handful. Ask for a small empty cup to portion out your popcorn from a shared bucket so you can accurately count your carbs.
- Account for High Fat: Movie theater popcorn is popped in oil and often topped with "buttery flavored topping," adding massive amounts of fat and calories that can cause delayed, stubborn blood sugar spikes.
- Pre-bolus and Extend: Because of the high carb and fat load, pre-bolusing is important. However, you may want to give a portion of the insulin upfront and extend the rest (or correct later) to match the slower digestion caused by the fat.
- Beware the Candy Combo: Mixing high-sugar candy (like Junior Mints or Raisinets) with high-fat popcorn creates a complex digestion scenario: an immediate spike from the sugar combined with a prolonged rise from the fatty popcorn.
Resources Mentioned
- Juicebox Podcast Meal Bolt: juiceboxpodcast.com/meal-bolt
- Able Now (Sponsor): ablenow.com
Introduction & Meal Bolt Roadmap
Scott BennerWelcome back, friends, to another episode of the Juice Box podcast.
In every episode of bolus four, Jenny Smith and I are gonna take a few minutes to talk through how to bolus for a single item of food.
Jenny and I are gonna follow a little bit of a road map called meal bolt.
Measure the meal, evaluate yourself, add the base units, layer a correction, build the bolus shape, offset the timing, look at the CGM, tweak for next time.
Having said that, these episodes are gonna be very conversational and not incredibly technical.
Scott BennerWe want you to hear how we think about it, but we also would like you to know that this is kind of the pathway we're considering while we're talking about it.
So while you might not hear us say every letter of Mielbolt in every episode, we will be thinking about it while we're talking.
If you wanna learn more, go to juiceboxpodcast.com/meal-bolt.
But for now, we'll find out how to bowl us for today's subject.
While you're listening, please remember that nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise.
Scott BennerAlways consult a physician before making any changes to your health care plan or becoming bold with insulin.
This episode is sponsored by Able Now, tax advantaged savings accounts for eligible individuals with disabilities.
If you or your child lives with diabetes, you may qualify for an ABLE account because of ongoing medical needs, and many people in the diabetes community do.
With ABLE now, you can save for future expenses without affecting eligibility for certain disability benefits such as Medicaid.
Learn more and check your eligibility at ablenow.com.
The Movie Theater Popcorn Dilemma
Scott BennerYou spell that ablenow.com.
Alright, Jenny.
Do you know the song Let's All Go to the Lobby?
Jenny SmithNo.
Scott BennerNo.
It's like this.
I used to play in front of, like, drive in movies.
It's like like dancing popcorn and candy would come out and be like, let's all go to the lobby.
Let's all go.
Jenny SmithI'm I've never I've never heard that song
Scott Bennerbefore.
Okay.
Well, you should go to I don't know.
Are there drive in movie theaters anymore?
Are there movie theaters?
Jenny SmithThere are.
There's actually one that's not too far from us.
I have not been to a drive in in a long time.
Scott BennerYeah.
Jenny SmithThey are they're super fun.
I think the last what's the movie with Cameron Diaz and What About Mary?
Scott BennerSomething About Mary?
Something About Mary?
That's the last thing you saw at a drive in?
Jenny SmithLast thing I saw at a drive in.
Yeah.
Scott BennerReference a movie nobody listening even knows about.
When when Kelly and I were first married, we would go to the drive in on on during the summer almost every Friday night.
She'd come home, get off the train, we would drive right to the theater, sit in the back of our we have an SUV.
We sit in the back of it and watch movies.
But I bring that up because I've been asked to talk about how to bowl us for popcorn.
Scott BennerOh.
But I wanted to expand that a little bit.
So I do wanna talk about popcorn first, but then maybe we'll talk a little bit at the end about how to blend it together if you're at the movies and having with other stuff.
Jenny SmithOkay.
Scott BennerAlright?
There are a number of different kinds of popcorn because I said to people, like, what do you like, when they said popcorn to me, I just assumed they meant movie theater popcorn.
But then people were like, well, what about, like, the kind you make at home, and what about, like, the Jiffy Pop, and what about popcorn in a bag?
And I was like, alright.
Well, I'll Jenny and I will look into it and try to figure out if there's a big difference, but let's start with the most difficult one, which I have to believe is movie theater popcorn.
Scott BennerRight?
Jenny SmithI would expect so.
Honestly, I it's kinda funny because I was gonna say, but we're not gonna bowl this for Chinese popcorn.
We're clearly bolusing for something.
A charger.
Scott BennerWhat does your popcorn taste like?
Air?
Jenny SmithNo.
My popcorns, I usually use I have a burly cup.
It's like you put it on your stovetop, and you put in like a little bit of oil.
And then you put your your kernels in, and the top closes, and it's got a little crank on the side.
Mhmm.
Jenny SmithAnd so you crank it, the thing in the bottom spins the kernels, and then it pops.
And it's awesome.
Like, I've had it for a very I'm not gonna say how long, but for a very long time.
And it is the thing when when my boys have their friends over, they're always like, missus Smith, will you make popcorn?
Scott BennerLike, they
Jenny Smithwant my popcorn.
Scott BennerSo I used to have that thing, but I kept burning it on the bottom because I Oh.
So now I just make it in a pot.
Jenny SmithAnd and you just shake?
Scott BennerI've used coconut oil.
Uh-huh.
And then popcorn, give it a little shake, pops out every time.
It's perfect.
Jenny SmithYep.
I usually put, nutritional yeast, kind of has, a cheesy flavor.
So I'll use nutritional yeast, and I'll use a little bit of a little bit of sea salt.
And then flavorings, I usually let my boys pick out whatever flavorings.
Sometimes they like dill.
Jenny SmithSometimes they like it spicy.
Sometimes they just want salt.
So Martin's
Scott Bennera a fan of, like, some fake cheese powder that we put over top of it.
You know, it's so funny.
Jenny SmithThere you go.
Scott BennerWe talk all the time while we're making these bolus four episodes about, like, what do people understand about the impacts of their food.
And I'm trying to look up movie theater popcorn nutrition now, and I see a Reddit thread that says, will movie theater popcorn seriously hinder my weight loss journey?
Yeah.
It will.
Jenny SmithHow often is this person eating popcorn?
Scott BennerI mean, that's a first of all, a valuable question.
But I'm looking here at large tub size, 600 to 1,200 calories, 27 to 48 grams of fat, saturated fat 19 to 34 grams often from coconut oil, total carbs 41 to a 148, and the sodium 1,500.
Jenny SmithYeah.
Scott BennerYeah.
Yeah.
Like, yeah, it's it's it's gonna hinder your weight loss journey for sure.
Jenny SmithRight.
And I'm assuming the difference in calorie there is very likely relative to whether you add the this isn't butter, but we call it butter sauce on the top.
Scott BennerYes.
Yeah.
Yeah.
I'm gonna go to is Regal Cinemas throughout the country?
Jenny SmithThe AMC is usually
Scott BennerYeah.
Jenny SmithThroughout the country too.
Scott BennerRegal popcorn nutritional estimate, refillable large tub, is approximately 20 cups with butter, but we all know it's not actually butter.
It's called buttery flavored topping.
1,200 plus calories.
That's a day's worth of calories.
Jenny SmithThat's a lot of calories.
Scott BennerYeah.
60 to 66 grams total fat, 126 grams carbohydrate, between a 101 and a 126.
So so let's say we're just going to the movies, and we're just having a popcorn.
Jenny SmithOkay.
Scott BennerOkay.
How do you do you pre bolus for it?
Do you I tell Arden to pre bolus while we're in line getting the tickets usually.
Jenny SmithYes.
Pre bolus would be valuable.
And then, you know, you bring up, gosh, I'm looking up the nutrition facts.
Right?
Mhmm.
Estimating Carbs and Fat
Jenny SmithWell, let's say you're not going to look up nutrition facts.
What is one of the bigger hitters with popcorn?
It's carbohydrate.
Right?
Scott BennerRight.
Jenny SmithA good estimate is that a handful of popcorn is about five grams of carb per handful.
Scott BennerOkay.
Jenny SmithSo if you aren't going to look any nutrition facts up and really all you're gonna do is initially cover carbohydrates, you could say, okay.
That large bucket is 20.
Right?
So 20 handfuls is about 20 cups at about five grams per handful.
Scott BennerOkay.
20 cups at five grams per handful.
A hun a 100?
Mhmm.
Okay.
Jenny SmithIf that's a large tub, you said it was 20.
Yeah.
Scott BennerRight?
Mhmm.
And then that's not you squirting the grease on top of it.
Jenny SmithCorrect.
That's just the popcorn.
However, they made it in the kettle with the fat already there.
Scott BennerIt was in yeah.
Whatever that stuff is that I guarantee that's not butter either.
I bet you there's not butter in a movie theater is what I'm trying to I'm probably Yeah.
So with I've got my my estimator up.
So with an insulin to carb ratio of 10 and insulin sensitivity of 50, I'm targeting 90.
Scott BennerA 100 carbs, no consideration for fat is 10 units.
Oh my gosh.
You're gonna bowl this that much for for I don't oh my god.
I'm sorry.
I know that's not how these are supposed that shocked me.
Scott BennerNow I know how people feel when they're like, that seems like a lot of insulin.
That's crazy.
Is that Mhmm.
Okay?
If I put the fat into it and just, like don't know.
Scott BennerIf you just snip like, I don't know.
Say the fat's 50.
Mhmm.
Oh my gosh.
Then it's a
Jenny SmithThat's a lie.
I and you're using your calculator.
Right?
Scott BennerYou're using your calculator.
Telling me that would be 10 units up front.
You need a pre bolus.
It's saying at least of, like, nine minutes, and then a Warsaw wave that could last up to eight hours of another four and a half units of insulin.
As I told you earlier, Able Now is sponsoring this episode.
Scott BennerAble Now, of course, tax advantaged Able accounts for eligible individuals with disabilities.
If you or your child lives with diabetes, you may qualify for an Able account because of ongoing medical needs.
Many people in the diabetes community do.
With Able Now, you can save for future expenses without affecting eligibility for certain disability benefits such as Medicaid.
And thanks to updates to federal law, ABLE accounts are now available to more people than ever before.
Scott BennerThat means more individuals and families can use ABLE Now to save and invest.
Funds in an AbleNow account can be used for a wide range of everyday needs, including education, transportation, health care, assistive technology, and more.
There's no enrollment fee, and you can open an AbleNow account with a small initial contribution and build from there.
Learn more and check your eligibility at ablenow.com.
That's ablenow.com, ablenow.com.
Jenny SmithYes.
Now the other consideration here too is what do you know about how your body processes this load at a time that's also a large amount of fat?
My initial recommendation for a meal, I'm gonna call it a meal because quite honestly, the calorie content of this is like several meals.
Scott BennerYeah.
Jenny SmithYeah.
But right.
So my consideration is there's a lot of fat.
Yes.
It's carby.
Jenny SmithTen units is a large amount of insulin to bolus at a time Mhmm.
For a food that has a fair amount of fat in it.
So you may even potentially use this as a tool to say, okay.
Ten units, but, gosh, I'm in a pre bolus.
Let's say you know your pre bolus is usually fifteen or twenty minutes.
Jenny SmithMhmm.
They're gonna apply that.
My consideration would be maybe bolus for only 70% of this upfront
Scott BennerOkay.
Jenny SmithWith the other 30%.
If you have a pump that allows extended boluses or you have a pump that allows a slower drip over a certain amount of time, etcetera, you might even do that over the initial hour possibly with a consideration then as the bolus four for protein and fat comes in that extra units when you finish the popcorn.
Scott BennerYeah.
I would
Jenny SmithThat's likely when you would push that in.
Scott BennerI'm glad you said that because I was about to say, like, I don't think I would do that.
No.
Yeah.
I don't think I would just throw in 10 units and be like popcorn time.
Like, it's because also I mean, that's a lot of popcorn.
Scott BennerLike, you could get halfway through it and be like, I ain't eating this anymore.
Jenny SmithCorrect.
Portion Control at the Theater
Scott BennerI know you're in the theater and you're trying to sit and have an immersive experience, but I think a movie theater visit is get ahead, stay ahead, keep bolusing if you keep eating.
Yep.
Like, that's sort of my my theory.
Plus, if you have a sugary candy that you're missing with mixing with this, then suddenly, I don't mind being even more ahead because then you can almost eat to the drop Yeah.
If you're gonna snack on sugary candy too.
Scott BennerBut it's a lot about go ahead.
Jenny SmithOh, no.
I was gonna say another trick is that, right, you're going to a movie theater probably with other people, and maybe you're there with a parent.
And the parent is like, sure.
I'll buy the large tub, but we're all gonna share it.
Mhmm.
Jenny SmithAnd there are three of you all dipping your hands into the one large bucket.
Well, great.
That's a 100 grams of carb, but you're not the only one eating it.
And so what makes it a little bit easier to count up and as you're saying, bolus as you consume, ask the theater for a small container that's empty.
Scott BennerYeah.
Jenny SmithFill up your child or your container.
You know, that small container is how many handfuls did you put in?
Maybe it's three handfuls, three cups.
Right?
That's 15 grams of carb.
Jenny SmithYeah.
Ebola is for the 15.
Oh, I'm gonna go back for more.
Great.
Fill it.
Jenny SmithBecause then you really have a little bit more ability to navigate.
Okay.
I'm in a bolus for more now.
I'm in a bolus for more now.
Scott BennerSo maybe movie theaters aren't such an issue because I mean, the food's not it's not great food, but, like, it's not so much about the food.
It's more about the you don't really know how much you're eating because of the snacking and the passing and all that other stuff.
Jenny SmithRight.
Scott BennerIf you can just kinda hold them aside I'll tell you when Arden was little, she would go she'd get a Slurpee at a movie.
And I have to tell you, it was kinda great because you just throw in a bunch of insulin up front and then just modulate it backwards
Jenny SmithIt's just sugar.
Scott BennerWith the Slurpee.
Like, oh, you're getting low.
Take another sip of the Slurpee.
And then you'd leave the theater without, like, a high blood sugar because I'm telling you right now, you could leave a theater with a three fifty no problem if you throw in not enough food and that snacking.
So do you think that when people say they struggle with popcorn, do you think it's more about, like, that part?
Scott BennerBecause I'm looking at SmartFood as an example.
Mhmm.
I mean, SmartFood popcorn, I know you can get that anywhere.
Yep.
13 carbs for two and a half cups, 11 servings.
Scott BennerSo that means that if you grab the bag of SmartFood popcorn and just did it in, you'd be on 140 or or so, like, carbs.
And that is the idea.
Right?
It's about this.
I'm making a back and forth with my hand.
Jenny SmithAnd you're Yeah.
You're bringing up the point that I was gonna say is, what is popcorn?
It's a snackable.
Scott BennerYeah.
Jenny SmithRight?
It's not usually something that you're going to sit down and really consciously pay attention unlike sitting down to a steak dinner with broccoli.
Right?
Yeah.
You're enjoying it.
Jenny SmithYou're chewing it.
You're probably having conversation, but still really paying attention in a slow manner.
Mhmm.
When we're talking about a movie theater and popcorn, one, we're in a dark environment.
Our brain is entirely focused on the movie or the previews that we're watching.
Jenny SmithYep.
There's no conscious accounting of how many handfuls you're stuffing in your face because you're not paying attention.
So that's why that at least start with a known amount, that small empty cup, dip it in, take your portion, bolus for it, and then acknowledge if you can pay enough attention.
Right?
Scott BennerKettle corn is actually less impactful than movie theater popcorn.
It's got much less fat in it if you
Jenny SmithOh, it's more sugar, but it's less.
Mhmm.
Scott BennerBut sodium's lower.
That's interesting because it's more that so they the the popcorn is a delivery system.
Jenny SmithOh, yeah.
Scott BennerYeah.
Yeah.
Yeah.
And for whatever else is is is Chinese like Duh.
Jenny SmithYes.
Thanks.
Scott BennerWhat's that what's the one Cracker Jacks.
Right?
Jenny SmithOh, Cracker Jacks.
Scott BennerI don't like them.
Funny.
Because they put
Jenny Smithpeanuts in like that either.
Scott BennerWhy would you put peanuts in food?
It's ridiculous.
Jenny SmithAnd I was always I remember as a kid, like, always came with that silly little dumb prize in the box.
Scott BennerIt was never a good prize.
Jenny SmithIt was never good.
Yeah.
I was always disappointed.
Like I and never even ate the like, shook the whole box out just to get the dumb prize, and I was like, two pieces of Cracker Jacks, I got a dumb prize.
I'm done.
Scott BennerThey didn't learn from McDonald's.
McDonald's knew to put, a decent toy in there.
Right.
Yeah.
Cracker Jacks.
Scott BennerWell, I'll tell you, gotta give it to Amazon.
They do a good job with the nutrition labels.
Cracker Jack's total carbs, 23 per serving.
Serving's about a half a cup.
Sugar's 14 grams.
Scott BennerTwo grams of fat.
It's it's a lot of it's a lot of sugar on popcorn.
Jenny SmithRight.
Scott BennerSo I I've never looked up food labels on so many different popcorns before in my life.
Like, popcorn doesn't seem like it should be difficult to bowl us for.
Jenny SmithIt's pretty carb.
Scott BennerIt's It's the delivery system, isn't it?
It's how you're eating it, not what you're eating.
Right.
In the scenario.
Jenny SmithYou brought up what SmartPop.
There's also SkinnyPop.
Scott BennerMhmm.
Jenny SmithI'm trying to think of the lesser evil is one as well.
Scott BennerIs that actually called lesser evil?
Jenny SmithIt's lesser evil.
It's usually made with avocado or coconut oil instead of, like, all the processed refined types of oils.
Yeah.
Thus, lesser evil.
Scott BennerSkinny pop total carbs nine grams for
Jenny SmithA bag.
Scott BennerThis bag.
Yeah.
Yeah.
The small, like, be a grabbable bag.
No sugar.
More fat than you would think.
Scott BennerSix grams of fat.
Sodium is pretty low at 50.
Yeah.
Okay.
Lesser evil popcorn?
Jenny SmithYeah.
It's a name brand of of popcorn.
Scott BennerNice.
Okay.
Adding Candy to the Mix
Scott BennerBut let's go back to the movies for a
Jenny Smithsecond.
Scott BennerYes.
Now we've got our popcorn.
Let's hope we're we've measured it out.
I don't know.
We have some aside, but now we're gonna get candy too.
Scott BennerSo Oh.
You said you have one candy.
You were telling me before we started.
What is it?
Jenny SmithSo the funny thing is that when my husband and I first started dating, movies were definitely a thing that we did.
Right?
And his go to always, without knowledge too much about, like, my diabetes like, knew I had diabetes, but, like, not really what was good
Scott Benneror good there.
Jenny SmithNot as focused.
His had always been Raisinets
Scott BennerOkay.
Jenny SmithAnd Junior Mints.
Scott BennerOh, Junior Mints.
Nice.
Jenny SmithSo both of those are and, you know, again, I could really care less about them, but I did know in terms of my management that I absolutely had to use, you know, a fair amount of insulin.
This is really just sugar.
Scott BennerWas a young Jenny Smith on a date?
Did you feel like, oh, I should grab a couple mints out of here so I don't seem weird?
Jenny SmithOh, no.
No.
I was willing to share a couple.
Scott BennerOkay.
Jenny SmithBut I've never like a sweet eater, I've never been give me the whole big that's why, like, gummy bears don't do like, can't
Scott BennerYou hit a number.
You oh, I can't do anymore.
Jenny SmithPick one gummy bear, and I'm I'm good.
Even if it's for a low, I'll eat the whole thing if I absolutely needed to, but, like, just well, like, it's a sugar overload to me.
So something like, I'll have one or two knowing he was totally gonna eat that.
Scott BennerTake take care of the
Jenny Smithrest of them.
Of right here.
Scott BennerTo make you feel old, but the top return on Google is do junior mints still exist?
Jenny SmithI've seen them at the
Scott BennerThey do, by the way.
Jenny SmithBut that's just like I've seen them at the grocery.
Scott BennerThere's no reason to make old people feel like that.
Junior mints, 26 carbs for 12 pieces.
So over a
Jenny Smithlittle It's about two grams
Scott Bennerof cheese.
Two a piece.
Mhmm.
And so that's the next thing.
So now I have I should get a piece of paper for a second.
Jenny SmithSo now we're adding candy on top.
Thank you for using my candy, by the way.
Scott BennerOh, of course.
Please.
Jenny SmithYou know one of my favorite things about junior mince was this is kinda weird, but, like, I didn't need many, and I could enjoy them because I like the shape and how it felt when it melted in my mouth.
Scott Benner100%.
Jenny SmithIt's a little dome, and it's got a little divot in the bottom of it.
Scott BennerI know.
And I just feel the divot with your tongue.
Jenny SmithLike, you can feel it.
Yeah.
And, like, it just melted lovely in my mouth.
Scott BennerI prefer a slightly stale ginger mint.
I like it when it's a little stiff.
I also like gummy bears better when they're stale and peeps.
Jenny SmithOh.
Scott BennerWhen do you know what Peeps are?
Yeah.
Peeps come into the house.
I take a knife.
Jenny SmithIn the pack?
Scott BennerI slice it open, and I let them sit for a day or two, and then I eat them.
And they're almost hard and gummy, and I don't know why
Jenny Smiththat's like
Scott BennerI like them that way.
But hold on.
How many so let's say I don't know.
What's reasonable?
Handfuls of popcorn.
Scott Benner10?
Jenny SmithI'd say at least 10 handfuls.
I mean, think about how easy it is to mindlessly
Scott BennerYeah.
Jenny SmithGrab handful after hand.
I would say 10 is a reasonable number of handfuls to expect somebody would eat.
Scott BennerWeird question.
Do you put the popcorn in your mouth or throw it in your mouth?
Jenny SmithOh, I I I put it in my mouth.
I it drives me crazy.
People were like, like, they shove it and then it's falling.
Like, it drives me crazy.
Like, just put it nicely in your mouth and chew.
Scott BennerAt my funeral, I believe Kelly will stand up and go, that son of a bitch threw popcorn in his mouth at a movie theater.
I am like a like, I bounce it, get it into a kind of and I just toss it in.
That's funny.
I'm also not putting like a I'm not shoving it across my face while I'm doing it.
It's not I'm not on fear factor small child.
Scott BennerTrying to get a, scorpion pie down or something like that, which should tell you what I watched on TV last night.
It's just it's a little a little, like, toss.
Jenny SmithIt's like a little game.
Scott BennerOh, she hates it.
She's funny.
It's like, just put the vodka in your mouth.
I'm like, I don't know why I do it like this.
So 10 cups, five carbs a piece.
Final Calculations and Fat Content
Scott BennerThat's what you said.
Right?
Yep.
So we get 50 from that.
Jenny SmithYes.
Scott BennerAnd that's carbs.
I'm gonna take the 12 pieces.
It feels silly, like isn't it funny?
It feels silly saying junior mince 12 pieces, but okay.
Right.
Scott Benner26 carbs because no one eats that way.
And then I wanna go back to the fat for the movie theater popcorn.
Jenny SmithOkay.
Scott BennerSo 20 cups with butter is about 60 or six listen.
I also this is the Internet.
I'm not sure about this.
I don't know.
I don't even know where you'd figure this out because you're drizzling the butter on yourself afterwards.
Scott BennerSo I don't know how you're gonna
Jenny SmithWhich is why I'm expecting it's an estimate of what they've
Scott BennerYeah.
There's a big range estimate here.
Yeah.
Jenny SmithYeah.
So I would take the middle.
Scott BennerThe middle's 60.
Yeah.
That's right?
Okay.
Alright.
Scott BennerWe're gonna see fat.
And then it's gonna be something else.
You want Twizzler?
Jenny SmithI'm curious.
How much fat is there without drizzling the extra yellow syrup on?
Scott BennerIt's not that easy.
Hold on.
Popcorn Nutrition, Regal Theaters.
I god.
Is this the I mean, trust me.
Scott BennerThey can barely get people to come to the movies.
They're not putting great information online for this.
Jenny SmithI'd expect a large has to already have 25 or so grams.
Scott BennerI'm gonna try to find the nutrition facts just for the the butter.
Jenny SmithOh.
Scott BennerI don't know if I can do that.
Yeah.
Oh, wait.
Movie theater butter.
No.
Scott BennerThat's Orville Redenbacher.
Jenny SmithThat's the pop it in your microwave and
Scott BennerThere's a food data website.
Movie theater popcorn movie theater with added butter.
I mean, if we take this at its word, I guess, a kid size order, 84 grams, do one cup.
One cup, yeah, 4.4 carbs, it's saying it's saying 8.2 fat for a cup.
See, if you took that number, then we're at 80 for 10 cup or for for 10 cups.
Jenny SmithTrue.
Scott BennerYou know?
So, I mean, I think the answer here is good luck getting a good nutritional count on movie theater popcorn with your butter on it.
But, like, just think of it as either five grams of carbs per cup, and if there's butter on it and you're a person counting fat, count some fat.
Right.
And if not, don't act surprised ninety minutes later when your blood sugar's two fifty and it won't move no matter what you do.
Scott BennerThat's pretty much and by the way, if you're gonna add the junior mints, good luck just being two fifty.
Because then you're gonna basically, you're gonna take the popcorn carbs, you're gonna stretch the digestion out with the buttery flavored topping, and then you're gonna supercharge the whole thing with a rocket made out of junior mints.
Jenny SmithCorrect.
Scott BennerThat's where the high comes from at the at the movie theater.
Jenny SmithAnd if you're like a friend of mine, she put raisinets in the popcorn and then took handfuls of both of them at the same time to eat together.
There there's something else that's
Scott BennerI like a milk dud, I wanna say, the theater.
Oh.
Yeah.
Yeah.
Jenny SmithI never liked
Scott Bennerthat.
No.
I used to like the cookie dough bites before they ruined them.
Started making them, but they had all egg in them.
I guess people got sick.
Scott BennerBunch of lightweights.
I could handle it.
And then they changed it to make it safer for you, now they're not good anymore.
So that's what you get with your safety.
You nerf the world, now cookie dough bites suck.
Scott BennerGood for you.
So sorry.
I really didn't care.
I was just like, I just won't get this ever again.
I'm a more of a, like, mix my popcorn with pretzel bites kind of person
Jenny SmithOh.
Scott BennerNow that I'm an adult.
But at the same point, like, even they suck.
You know what I mean?
You don't know, Jenny.
But let me tell you something.
Scott BennerYou pay a thousand dollars for seven pretzel bites.
By the time you get to your seat, they're cold already, and they're hard.
Jenny SmithAnd they're they're probably really, like, stiff.
Right?
Scott BennerIt's like going to McDonald's.
If you don't eat it piping hot, like, ten minutes later, you're like, what is what am I putting in my mouth exactly?
You you know what I mean?
At least the popcorn.
The popcorn's the popcorn.
Scott BennerI do wanna try to find buttery flavored popcorn topping.
It's almost one time.
Oh, okay.
Jenny SmithDid you find it?
Scott BennerOh, it comes in jugs that would horrify you.
Hold on a second.
This one's made by Amish Country Popcorn Buttery Topping, I have to say.
Jenny SmithAre these, Costco sized tubs?
Scott BennerI mean, it's it's a 128 fluid ounce.
It's a gallon.
I'm gonna just say earlier when I said about the cheesy flavored popcorn, we use the Amish country cheesy flavored popcorn is the one we actually use.
Jenny SmithOh, the the flavoring that
Scott BennerI'm so embarrassed.
Jenny SmithThat.
That's so funny.
Yeah.
Scott BennerThere you company in Indiana.
I'm sure they're doing good work out there.
There is no nutrition label on this.
Yeah.
Oh, wait.
Scott BennerNo.
There is.
God bless the world.
Alright.
No carbs.
Scott BennerNo cholesterol.
14 grams of fat per serving.
Jenny SmithCholesterol, which means that this does not have butter in it.
Scott BennerYes.
Well, that's why they call it buttery flavored topping, but I'm gonna flip you out right now.
There is 14 grams of fat in a serving.
What's the serving size?
Because everybody just heard that and thought, oh, in a cup of it, there's 14 grams of fat.
Scott BennerBut no, Jenny.
There's 14 grams of fat
Jenny SmithA tablespoon?
Scott BennerIn a tablespoon of it.
Jenny SmithYeah.
Scott BennerIn a tablespoon of it.
So when you're standing over at that machine and you're going, and you're spinning your popcorn and jostle it up and down, it probably would be safer to run out in front of a car.
So so anyway, if you're wondering why movie theater popcorn is hitting you like this, this is the conversation right here.
Mhmm.
Let's tie this one up with just making popcorn with coconut oil.
Jenny SmithOkay.
Scott BennerLike, so I would tell you, just from a personal experience, I don't really Arden boluses for it pretty much just like a carb.
Like, she
Jenny Smithpretty That's all I do.
Scott BennerYeah.
Yeah.
Yeah.
Jenny SmithI I bolus for it as if it's a carbohydrate.
I give it a pre bolus, and I eat my popcorn.
Scott BennerYeah.
That's it.
Right?
You're not really doing more or less than that.
So No.
Scott BennerSo in a nutshell, in a raisin nutshell, if you when people ask about popcorn, popcorn, popcorn, popcorn is, in your opinion, it's more about what's on top of it.
Yes.
And that could be topping, like, buttery flavor topping at the theater.
It could be, you know, sugar in the form of kettle corn.
It could be anything like that.
Scott BennerBut it's the impact probably comes more from either not understanding the fat content if you're at the theater and probably the mix of something else in there and or the kind of chaotic way that you take it in over time.
Jenny SmithCorrect.
Yeah.
Yeah.
Absolutely.
I mean, I've had random people who've said, you know, I have popcorn like the skinny pop or the smart pop or whatever and have said, you know, I feel like I also get a little blip up in blood sugar later on from it.
Jenny SmithDigestively, we are all a little bit different.
I can say my n of one is that that doesn't happen to me.
Scott BennerYeah.
Jenny SmithEbola is cover it.
I don't end up having anything else happen after that I have to cover sometimes in this yeah.
Scott BennerThe skinny crop did have more fat in it than something else, but it's probably trying to make up for the flavor of not having whatever it is they did to cut the carbs down on it.
Jenny SmithRight.
Scott BennerYeah.
Yeah.
God.
What did they do to to cut the carbs down on it?
Jenny SmithI don't
Scott BennerI I can't anyway, I love popcorn.
I don't like, I don't like getting the kernel stuck in my teeth afterwards, but don't forget to get those out.
If you like a sore, like, if your gum gets sore and you realize, like, two days later, there's a popcorn kernel in there, It's very upsetting.
Jenny SmithIt is upsetting or that it's, like, worked its way out, and you can finally feel it along the side of your tooth.
And you're like, I wasn't there before.
Scott BennerI know.
But there's, something you're like, what is that?
Jenny SmithI did this three days ago.
Scott BennerAnd then you do that thing where you go, like, oh, I had popcorn the other night while we're watching a movie.
Is that what this
Jenny SmithUh-huh.
Yes.
Scott BennerDo you feel like we covered this pretty well?
Jenny SmithNo.
That was it's a great one to bring up.
Scott BennerYeah.
Okay.
Cool.
Alright.
Well, I appreciate it.
Scott BennerI'll talk to you later.
Jenny SmithCool.
Outro
Scott BennerA huge thanks to today's sponsor, AbleNow.
AbleNow offers tax advantaged able accounts for eligible individuals with disabilities.
If you or your child lives with diabetes, you may qualify because of ongoing medical needs.
With Able Now, you can save for a wide range of disability related expenses without affecting eligibility for certain disability benefits such as Medicaid.
And thanks to recent federal law updates, more people are eligible than ever before.
Scott BennerLearn more and check your eligibility at ablenow.com.
You spell that ablenow.com.
There's links in the show notes and links at juiceboxpodcast.com.
Hey.
Thanks for listening all the way to the end.
Scott BennerI really appreciate your loyalty and listenership.
Thank you so much for listening.
I'll be back very soon with another episode of the juice box podcast.