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Here we are back together again, friends, for another episode of the Juice Box Podcast.
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My name is Katie Beth Hand and I am patient 9 in the ELODON trial to cure type 1 diabetes. It is a functional cure using donor derived islet cells and a new investigational drug called Tegaprobar.
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I created the Diabetes Variables series because I know that in type 1 diabetes management, the little things aren't that little and they really add up. In this series, we'll break down everyday factors like stress, sleep, exercise and those other variables that impact your day more than you might think. Jenny Smith and I are going to get straight to the point with practical advice that you can trust. So check out the Diabetes Variable series in your podcast player or@juiceboxpodcast.com if you're looking for community around type 1 diabetes, check out the Juice Box Podcast. Private Facebook group Juice box podcast type 1 diabetes but everybody is welcome. Type 1 type 2 gestational loved ones it doesn't matter to me if you're impacted by diabetes and you're looking for support, comfort or community. Check out juicebox podcast type 1 diabetes on Facebook. 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 healthcare plan. A huge thanks to my longest sponsor, Omnipod. Check out the Omnipod 5 now with my link omnipod.com juicebox you may be eligible for a free starter kit. A free Omnipod 5 starter kit at my link. Go check it out omnipod.com Juicebox terms and conditions apply. Full terms and conditions can be found@ omnipod.com Juicebox USMED is sponsoring this episode of the Juice Box Podcast and we've been getting our diabetes supplies from USMED for years. You can as well usmed.com juicebox or call 888-721-15148, use the link or the number, get your free benefits check and get started today with US Med.
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My name is Katie Beth Hand and I am patient 9 in the Eladon trial to cure type 1 diabetes. It is a functional cure using donor derived islet cells and a new investigational drug called Tegaprobart. I am married, I live in Arkansas, I have four beautiful children at home and I absolutely love to talk about my experience as a type 1 diabetic of 13 years and now as a person going through this trial and and I'm so excited to be with you today.
A
Wow, you've said that before, I imagine. That was awesome. Was number nine not A movie, like an animated movie about a sandbag. Hold on a second. I know this is probably, you're like, I didn't know this was going to go this way, but yeah, if it
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was, I haven't seen it.
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2009 animated film called Nine.
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I'll have to add that to my watch list.
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I remember watching this with my kids in a theater. All right, all right, number nine, let's get going.
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That's right. You can call me number Nine from here on out.
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Katie, don't trust me. Don't put me in that position, because I might. So let's go back to the beginning. Okay, I'm going to start really, really beginning, beginning. You have parents, I imagine, because you're here and you're alive. Do you have siblings?
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I do. So I have parents. They actually live. Like I said, I am from central Arkansas, from Little Rock, and my parents actually live three doors down from us. And then I have one sibling, a brother. He is six years older than I am and he lives in the house next door. So we created our own little family compound. And my kids, we have four kids and they bebop back and forth between my brother's house and my parents house and it's. It's a great life.
A
Tried to get my wife to move to Tennessee this summer and she just ignored me. I had similar ideas. Okay, anybody in your extended family have autoimmune issues besides you?
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So interestingly, no. Everybody always wants to be special, and in my case, this is not the type of special special you want to be. But no one in my family has any history of type 1 diabetes, of other autoimmune diseases, no Graves disease, no celiac disease, none of these other things that typically go hand in hand. I am the one strange outlier with type 1.
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How old were you when you were diagnosed?
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I was 26 years old.
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Oh, okay. And you? And now. I'm sorry, you are.
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And now I am just about to turn 40, so it's been about 13 years since diagnosis.
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Okay, so just very quickly, what do you remember about your diagnosis?
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Let's say diagnosis was really, really traumatic. I as diagnosis day is for every T1. I went to my PCP's office because I thought I had the flu. I'm like a lifelong athlete and I had just been so tired, too tired to work out. I remember sitting on my couch before I got diagnosed one night thinking like I can feel myself having to make the effort to breathe. Like that's how just physically exhausted I was. And I had all of the typical symptoms of T1, I just had not put them together yet. I was exhausted. I went to the bathroom 15 times a day and was so, so thirsty and hungry all the time. So I went to my doctor. It was actually March 13, 2013, 3, 13 13. So not a great day to go to the do. And I went in, and that was the day that I got my diagnosis. And so he actually came back in and they had run my blood sugar, and he was like, so actually, plot twist. It's. It's diabetes. And we do have a couple of people in my family that have type 2 diabetes, and so that can be very genetic. And then I was older. I was 26. So even though, you know, I wasn't overweight, I didn't have some of those other things. He was like, I'll put you on Metformin. You know, we'll take care of this thing over. So I got this type 2, tentative type 2 diabetes diagnosis, left the doctor's office. And then to this day, I'm not sure what test result came back in, if it was my C peptide or my A1C or what. They ran, but I left his office and then a couple of hours later, got the most frantic phone call that was like a nervous nurse. And she was like, hey, and what do you. What are you doing? How are you feeling? And I was like, well, you know, depressed, but fine. And she was like, cool. So actually, we think that you are in dka. You need to drop everything that you're doing right now. Do not do anything else. Get your car keys, have someone drive you to the er. We have already called ahead. They are waiting for you right there.
A
Katie. She was like. She was so thrilled. You said just depressed. She was like, oh, she probably turned over her shoulder and looked at everybody in the room, but she's just depressed. It's going to be fine. We didn't kill her. We didn't kill her.
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Yes. Genuinely, like, this sigh of relief when I answered the phone.
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Yeah.
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So I ended up. My parents drove me to the ER and was in dka, got checked in. And, you know, it's the same story for everybody from that point. You know, I put me on IVs. I was so severely dehydrated, blood sugars through the roof. My A1C was 13.9. Okay, so not great. Ended up spending several days in the hospital, and that was really a dark time. It was a time of. Of grief, getting that. You know, getting diagnosed with type 2 was like, so out of the blue. And I Had so many questions, and. But, like, there's that part of you that's like, you know, I'll figure out a way to beat this. You know, I can. I'm an athlete. I'll come back from this. You get diagnosed with type one, and they're like, so anyway, this.
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Now this is. This. Yeah, yeah, yeah.
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Here's insulin pins. Here is a glucose meter. You'll need to use these every few hours, every single day and all night for the entire rest of your life until you die. All right? Hope you feel better. So that was a. That was a diagnosis day. And those few days after were really, really dark. A very, very hopeless time for me.
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Can I ask. And let me ask you a question, Katie. You're. You're too good at telling your story. Let me ask a question. Okay. Did you fall back on your parents for help? Or at 26, were you, like, I'll do this on my own. Were you married, dating? Like, what was your structure at home?
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Like, so I wasn't married. I was still single. I had been. I was like a free spirit. I. I worked for. I was actually working for a travel company, so I had been, like, taking tour groups overseas. I love to. To bike and hike and be outdoors. And so my support system was my parents. I wasn't dating anyone. My parents were my support in, like, the emotional support getting through all of this. But really, from day one of diagnosis, like, managing my diabetes has always been me. They've not. You know, they don't help with insulin, and insulin to carb ratios, and none of that was on them. That learning curve is one I took on and did myself.
A
Then what was that like? I mean, what. Would you tell me that from that moment until. Well, maybe you'll tell me you never had it together, but, like, is there a moment where you're like, I know what I'm doing. This is going better? And how long did it take to get to that?
B
There was eventually a point where I felt like I did have it. As much as you can have it together with Type one. I don't believe anybody really ever has it all together with type one. But at the beginning, I tell people getting a T1 diagnosis those first few months, the learning curve is so steep, and there's so much information. It feels like being sprayed in the face with a fire hose. Like, there's just. It's so overwhelming after several years, and I don't know exactly when I kind of crossed over that line, I really did hit that point where it was just another Part managing diabetes was just another part of my day. It wasn't all consuming. It didn't depress me. I learned how to make it as small a part of my life as possible and keep moving. But that was the learning curve on that was multiple years before. I feel like I really got to that point.
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Tell me about your life in those multiple years. How would you describe your level of happiness? Were you active like you wanted to be? Did it hold you back in other ways? I mean, what was the percentage of impact on you?
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I guess the impact was really severe, especially at the beginning. So when I first started taking insulin, one of the things that happened was, you know, I'd been athletic and then I'd gotten really skinny because of the diabetes. So when I started taking insulin, I had been eating like Michael phelps, like probably 3 or 4,000 calories a day before I got diagnosed because I was hungry all the time. And it wasn't, you know, I'd drink a milkshake before bed and wake up a pound lighter and I'm like, this is great. One of the things that happened that was really difficult for me as a 26 year old woman was I went through like a dark time physically after diet, in like the year or so after diagnosis, because in getting my blood sugars under control and that process, it was that constant yo yo of I would take my insulin and my blood sugar would go too low, so I'd have to eat and it'd go too high. We had a lot of yo yoing. So. So I put on a lot of weight very quickly, like £30. And then on top of that, because of the however many months and weeks I had gone without really getting any nutrition, a whole bunch of my hair fell out. Not bald, but enough that for a woman it was very significant. So I was like fat and bald, which was a real bummer. Fat and bald with a chronic illness, wear these devices all day. I was scared to exercise because it kept sending me low. I hadn't figured out how to build exercise back into my routine. I felt, Scott, for those first, probably that first entire year for sure, like my body was not even my own. It felt so foreign and so out of control. And then eventually I got better at it and figured out how to exercise with diabetes. I got my first cgm, which was a real game changer in the way that I figured out how to manage my diabetes. So those first years were, were very dark. There was a tough learning curve. And then after that, I kind of figured out who I was kind of rebuilt myself with this diagnosis in mind.
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Got it. Hey. The weight gain was from a lot of lows. So you were eating a lot to stop lows? Was that the idea?
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So it was two. It was two factors. One was I had been eating. I was just in the habit of eating a ton because I stayed hungry. Yeah.
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It didn't matter before. Right.
B
I got it better before. It didn't stick. And then the other one was. So that was in combination with. I had gotten my body used to just eating all day long. Eating and drinking all day long. And then on top of that, then, of course was when I would go low, then I would have to eat something. And I really hadn't figured out, like, a little bit of juice or glucose gummies or whatever. So those two things in combination made me put on weight very quickly those first few months after diagnosis.
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Has that hunger stuck with you since then?
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So, yes, the hunger from, like, eating 4,000 calories a day has not. But, you know, T1s don't have the same hormones, proteins that make us feel satiated like other people do because we don't have those islet cells. Am I hungrier than other people? I don't really know how to answer that. It's something that I watch, and it's not something that I obsess over or that I have obsessed over the past 13 years. Once I really got back to a place where I felt confident, like exercising, and then on top of that, figured out, like, what can I eat? Making healthier choices overall, you know, it kind of eased into a pattern.
A
Okay. All right, that's. I appreciate you giving me that background. I'm gonna fast forward you a little bit. I'm gonna jump ahead to you telling me about the. I mean, I don't know what to call it. Is it a study? Are you in a. What is. I know people are listening and they're like, why doesn't Scott know? Scott knows. Once I talk about stuff, I. Other than that, I'm paying attention to making the podcast. So what is going on right now? I have always disliked ordering diabetes supplies. I'm guessing you have as well. It hasn't been a problem for us for the last few years, though, because we began using US Med. You can too usmed.com juicebox or call 888-721-1514 to get your free benef. US Med has served over 1 million people living with diabetes since 1996. They carry everything you need, from CGMs to insulin pumps and diabetes testing supplies and more. I'm talking about all the good ones, all your favorites, Libre 3, Dexcom, G7 and pumps like Omnipod 5, Omnipod Dash, Tandem, and most recently the ilet pump from Beta Bionics. The stuff you're looking for, they have it at usmedia 888-721-1514 or go to usmed.com juicebox to get started now. Use my link to support the podcast that's usmed.com juicebox or call 888-721-1514. Today's episode is also sponsored by Omnipod. Would you ever buy a car without test driving it first? That's a big risk to take on a pretty large investment. You wouldn't do that, right? So why would you do it? When it comes to choosing an insulin pump, most pumps come with a four year lock in period through the DME channel and you don't even get to try it first. But not Omnipod 5. Omnipod 5 is available exclusively through the pharmacy, which means it doesn't come with a typical four year DME lock in period. Plus you can get started with a free 30 day trial to be sure it's the right choice for you or your family. My daughter has been wearing an Omnipod every day for 17 years. Are you ready to give Omnipod5 a try? Request your free starter kit today at my link omnipod.com Juicebox terms and conditions apply. Eligibility may vary. Full terms and conditions can be found@ omnipod.com juicebox find my link in the show notes of this podcast player or@juiceboxpodcast.com
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so it's a clinical trial. So that's what I'm in. So in the meantime got married, we have four kids, life is good, have a career, living a great life with diabetes. So not slowing me down, doing all the things I had. Had a really hard diabetes day, a lot of highs and lows and ended up finding a clinical trial online and applied for it and it was the Eladon clinical trial, which is the trial that I'm in. I can talk to you. I'm sure you've got lots of questions about that one or listeners do. But the Eladon clinical trial is what it is. It runs through the University of Chicago Medical center in Chicag and it is a trial that is testing these we take cadaver dead donor islet cells and transfer them into actually the liver, not the pancreas and then use the trial dug instead of the traditional drug Tacrolimus which has been used for years and years with all sorts of transplants to protect the body, you know, to keep that immune system from attacking. This trial uses the trial drug Tacrolimus, or the trial drug Tegaprobar. And Tegaprobar is, you can feel free to write this down and Google it later. It's an anti CD40 ligand, so it protects those islet cells in a very, very targeted way versus suppressing your entire immune system. So that's why this is a big deal on the forefront versus the traditional medication of tacrolimus, which is a full blown immunosuppressant. So the TEGO is what makes. Islet cell transplants have been happening for years. The TEGO is what really makes this study very unique and very exciting.
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And so the big thing to get excited if you don't understand what's being said and you're like, I don't. She said Tago. She said Eldon. She said a few things. You are getting a transplant of islet cells into your liver and the suppressant is not as aggressive. Tell me, like plain language, why are we more excited about how this is being done than how it's been done previously?
B
Yeah, for sure. So tacrolimus, and I'm not hating on tacrolimus, it has saved tons of lives over the years. Tacrolimus has been around for about 30 years, so it's used in all types of transplants. So whether you're getting a kidney transplant, whatever, the medication you're going to go on is tacrolimus. It is a full immunosuppressant. So it does keep your body from attacking those foreign cells. But the downsides, the negative side effects of tacrolimus are things like neurotoxicity. It's really hard on your kidneys. It can cause kidney damage and kidney trouble. And ironically, it can actually be toxic to islet cells. And so long term, it is harder to do an islet cell transplant and make that last for the rest of someone's life, because that toxicity builds up and actually damages the very islet cells we're trying to protect. So that' islet cell transplants with tacrolimus aren't like the standard of care for diabetes, because what you would really be trading off would be we're trading off our life of taking insulin versus maybe some good years with the tacro. But then there's also the risk of all of these side effects, maybe kidney damage. How long are these islet cells going to Last. And so for the majority of the population, that's not a trade off that they're willing to make. So the difference between the Tacrolimus and the Tega Probart is. Tega Probart, while it is an immunosuppressant kind of, it is a very targeted immunosuppressant. And the other thing that makes it absolutely beautiful, not only does it not suppress my entire immune system and make me more vulnerable for a lot of things, it also has zero side effects. So I don't feel bad, I don't have headaches, I don't, I don't know, whatever all the things are you associate with being on like a big immunosuppressant. I don't have any of those side effects. So that's, that's the other really cool part that separates the Tega Probartego.
A
Yeah.
B
From the traditional drugs is the Tego.
A
It's an IV infusion. It is.
B
So that's really cool too. As a person who, you know, has been. I had a pump for a long time and then do have done multiple daily injections for the last few years. So getting to trade that for a. So it's every 21 days. It is an hour long IV infusion. So I get an IV and they hang the bag of Tego and I sit there and work on my computer. And then like, that's it. And it's, it's that every 21 days. And so a complete radical lifestyle change from the day in, day out. Management of type 1.
A
I see here they're working on a version you can inject under your skin. Like an EpiPen.
B
Yeah, so they're working on a subcutaneous version. So I'm in phase one of one of this trial. I was one out of the first 10 patients. Number nine, of course, of the first 10 patients. And so, you know, this was the kind of, the testing of. Does this work? Well in this, how good as a, you know, are there side effects? So that's all gone absolutely beautifully so far. So they're working on. I think what you'll see in the coming years is what they're working on is kind of taking this medication and making it more lifestyle friendly. So eventually, will that look like a subcutaneous injection that you pull out of your fridge once a week and take eventually will they get it to where it's a pill form? I don't know what that looks like or what the timeline is on that, but that's where we are. The Drug itself has been proven to be effective, so now they're working on making it more lifestyle friendly.
A
Do you have any idea how long it would take if you missed that IV infusion for the. Your new liver beta cells to go ah. And drop over dead?
B
Yes. So the great news about that is it's been used in some other studies, including, like, kidney transplants, and they actually think there's a much longer window than the. Every 21 days. They think that it's probably closer to two or three months. 21 days is what we're doing as part of this trial, but they don't. The data is showing that it probably doesn't actually have to be that often because I'd had that conversation with the team. You know, I live in Arkansas. I fly to Chicago every 21 days, and. And I'm like, what happens if I can't get here? And they were like, well, just get here as soon as you can get here and we'll do your infusion then. So it's not like the clock runs out at, you know, 21 days, one minute, and then your islet cells die off. That's just the safe.
A
Like a bell went off in your head or something like that. But I was just wondering.
B
Yeah, yeah, yeah. You keel over. Yeah. So. So there's a bigger window on it than that. And. And we've not tested to see how big a window that is, but I
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don't think you should, by the way.
B
But, yeah, I won't. I do not volunteer to be part of figuring that out. Yeah.
A
How aware are you of the other nine?
B
So the cool part is I'm on TikTok and Instagram and Facebook and obviously I don't. I haven't met most of these people, like, through the trial itself, because the team, the research team is like, very careful about patient confidentiality. So you're allowed to talk about the trial and talk to other people, but, like, they would never talk to you about the other people in the trial or tell you who they were. So the interesting piece is the TikTok algorithm is really, really good at connecting people. So when I started posting and announced that I was part of this trial and all of these different things, it actually ended up putting me in the same algorithm with a couple of the other people that were in this exact same trial. So I've met them, and I've also met other islet cell transplant recipients from other trials as well. So that's how we've gotten to know each other. I know. Gosh, probably Three or four people that are in my trial, and then I know multiple people that are doing other CL trials as well.
A
How long ago did you have the procedure done?
B
So here's the crazy part. I actually had the procedure. I had my eyelid cell transplant on January 12th of. Of this year.
A
Oh, like a month ago.
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Yeah, okay. Right. I mean, we're a month out. It's. We're recording this February 17th.
A
I was wondering how you were so upbeat about saying, so I just fly to Chicago every 21 days. I was like, that doesn't sound like she's done it that many times yet.
B
Yeah, well, so actually it's funny you said that for the first three weeks. So you have the transplant and you get. While you have your transplant, then you stay in Chicago for a week post transplant, get one more Tego infusion, and then for the next three weeks in a row, every Tuesday, I flew up to Chicago, did my one hour infusion, and then flew home. So I have traveled to Chicago many, many times. But the transplant itself was on January 12th. And then a week later, when I went to check out of the hospital, they went ahead and took me off basal insulin completely. The interesting part about islet cell transplants are it takes about three months for those islet cells to really, like, take root in your liver, establish blood flow, and become fully functioning. And so we were really excited when I was a week out and they took me off basal insulin completely. And then over the course of the last four weeks, every time I go, we're. We're looking at numbers, we're looking at my Dexcom and they're just kind of slowly weaning me down off of my insulin till I reach the point where I just won't take any at all.
A
Wow. Has that been exciting?
B
Yes. Yeah. To come home and take my basal insulin and just like, toss that whole pin in the trash was a very cool moment. Yeah.
A
And you're just eating normally. Are you still covering?
B
So, yes, so I'm recovering. So. Because the little islet cells are. We're trying to let them rest now. If I went out and ate like a big cheeseburger and fries, my islet cells would absolutely kick in and, like, I would spike and then they'd come correct that. So that would happen. But what we're trying to do here in the, like, in these early months while they're getting established is I'm using kind of like a protective dose of insulin, so we don't stress those islet cells.
A
Okay.
B
So I take insulin and Take it like, well before, like all good diabetics should. I take my insulin well before I eat. And so I'll take it, wait till my blood sugar starts dropping and then eat whatever I'm going to eat. And the reason for that is because we're trying to keep those cells from stressing and working quite so hard. And then I'll also have to wait long enough and that my insulin that I've taken has time to kick in so that my islet cells don't pick up a blood sugar spike because then they'll try to come correct that as well. Not real. There's other insulin on board. Yeah.
A
How long do they think it is until those cells are ready to rumble?
B
Yeah. So typically three months is like the time until they're fully mature.
A
Okay.
B
I just did a mixed meal tolerance test in, well, last week, last Tuesday, exactly one month post transplant. And so for that you eat, if you never had a mixed meal tolerance test, you eat a certain number of carbs. And then they do a blood draw like every 15 minutes for four hours and measure what your blood glucose number and then also how much C peptide you're making. And so it was really cool to watch my blood sugar. I drank this shake and then it. I watched my blood sugar start to go up and then it hit like 1/70ish and then just leveled off. And then I watched over the course of the next hour as it just went back down. And then my islet cells pulled that back down to 81 and just sat there for like 81 and just sat there for the rest of the course of the test.
A
Did you cry? Yes. Yeah, I would have cried, I think.
B
Yeah.
A
Wow. Hey, do you have any other autoimmune issues?
B
Nope, I do not.
A
Can I tell you how bummed out I am about that? Because I was wondering if this TEGA works on other stuff. I was like.
B
And so the answer to that is, I think that it does. And there are talks about using it in a bunch of different ways. So they're using it right now with kidney patients as well because unlike the Tacro, it doesn't cause kidney issues. So that's been great. But there are talks about trying it, you know, with kids. I don't know how much you know about, like, young kids being diagnosed, but with kids, if you can catch the antibodies, the T1D antibodies, like before, they're actually like full blown diabetic. There's actually a medication that they can take that can stretch out, like how long it takes. They can Add like two or three years before they actually have to go on insulin.
A
The plasma.
B
Yes. So they're. So they're talking about trying the Tego in that to see if it's even more effective and can stretch that period out even longer by protecting those cells, which would be pretty cool.
A
Katie, let me tell you that our overlords say that it's also being used for some other stuff. And one of them is actually. Let's see what I got here. There are trials. Phase two trials. Transplants in the year. Als.
B
Very cool.
A
Yeah. The drug started, it said. This is actually where the drug started. ALS involves massive neuroinflammation, where the immune system mistakenly attacks motor neurons. Alzheimer's. Similar to als. Alzheimer's is now widely viewed as having a massive brain on fire component. Neuroinflammatory autoimmune kidney disease for people with conditions like lupus, nephrotite. Geez. Nephrititis and IgA neuropathy. Their own immune system attacks. And the filters in their kidneys. Currently they use high dose steroids and chemo like drugs for something like that. But Tego is being studied as a way to maybe turn off that specific attack on the kidneys and like you said with liver transplants. But this is the one that got me interested. While it's not a primary focus of Eldon right now, the CD407 pathway is a validated target. That's in quotes for RA.
B
That's awesome.
A
Yeah, because it's. As soon as you started talking about it, I felt like I was like, hoping you had eczema or anything that was like, inflammatory, you know, anything else
B
that it can cure as well.
A
Yeah, I just wanted you to be able to go. You know, I used to have a patch of dry skin on my arm and it's gone.
B
And now that you mentioned it, no, I don't have any other autoimmune issues. That's interesting to think about. I'd not really thought about that. I need to ask the other people in the trial.
A
See, please. And then send them my way.
B
Any of this? Yeah.
A
Here's a Hail Mary. Do you have seasonal allergies?
B
No. Well, I mean, no, I live in Arkansas, so I might get a little sniff. Sniffly. But no, nothing.
A
Like, you walk outside, you're like, why is this happening to me? Okay. Oh, geez. Well, all right, fine. Katie, be a bummer and be healthy
B
other than your questions.
A
Scott, be healthier than is going to be valid for me to keep talking in this direction.
B
All right?
A
Okay, so you find out about the study. How did they figure out you were a good candidate for this study? Is there another number nine somewhere who's listening to this is all bummed out because they weren't a good candidate?
B
Probably. So with every clinical trial, there are very specific criteria that you have to meet. So. And this is one of the questions I get most often. So when I applied for the trial, I ended up, like, I filled out all of this information online and then ended up doing a very long, very detailed phone call, like, phone interview, where I think, number one, they make sure you're not completely nuts. And then, number two, Katie, how far
A
towards completely are you nuts?
B
I'm not completely nuts. And so they were like, I guess we'll let this one slip through. They ask you all of these detailed medical questions. How much insulin do you take every day? I mean, all of this medical history. Then I had to turn in all of these medical records, all this stuff. So it was a very. It wasn't like I emailed them and was like, hey, can I be part of the trial? And they were like, sure, come on up. I mean, we did. There was a phone interview. There was a second phone interview. I flew up to University of Chicago last May and spent five straight days in the hospital during the day. I didn't stay there at night, but in the hospital. And they scanned every organ of my body. I did EKGs, I did stress tests, I did X rays, all of this stuff. Number one, creating a baseline for where I started so that they could compare it to where I am now. And then, number two, making sure that I don't have other issues going on that would make me not a good candidate for the trial. And I had to have letters from, like, my dentist and my eye doctor and all of these things saying I'm healthy enough for. To be part of this trial. So went through and. And did all of that specific criteria. There was, like, a certain amount, and they're all listed on the. On the website, on the Eladon page, on the UChicago medical page. But it's stuff like, you know, you can't have diabetic retinopathy and do this because with this trial, you have, like, from the moment you get that infusion of islet cells, you have, like, a radical correction of blood sugar. It drops from, you know, highs and lows to just being in range all the time. And if you have diabetic retinopathy, that can actually make your retinopathy a lot worse. So that's one Part you can't take over a certain amount of insulin every day and be part of the trial. You can't have some of these other things and be part of the trial. So there were very specific criteria that you had to meet. Then you had to do the physical exam. And then after that, I ended up getting chosen to be part of the trial.
A
Wow. How long was that process?
B
So by the time I had applied the year before, so this was like a, this is like a two year process for me. I had applied online the year before and done, you know, all the virtual meetings and, and questionnaires and things went in May of 2025 and did all of my scans and then got accepted. Dr. Rakowski, who runs the whole program, he called me himself when I actually got chosen for the trial and so went back up in October of. So this past October. October of 2025. And you have to go on. Before you can go on the transplant list for anything, you have to have a medication called thymoglobulin. And it's yucky. It is by far the worst part of this whole process. And they tell you that up front now. It's not horrific, it's just not fun. You get either 3 or 412 hour IV drips of thymoglobulin. It's super tough on your veins. It's a real immunosuppressant. Like it was the not fun part of the trial. So I went up and did that in October. I went on the transplant list the week of Thanksgiving in November 2025. And then I got the call in early January and had my transplant on the 12th. So it felt like it was a long time to me, but it really was not. Was just the course of a couple of months. Months.
A
Yeah. I actually had the doctor on my list, he was on my schedule for November and then he had a surgery get moved and it was literally like they put the surgery right on the day we were supposed to record. And then the holiday came and we haven't gotten back to getting it on the schedule yet.
B
So you were going to interview Dr. Wachowski?
A
Yeah, yeah, yeah.
B
He's four months ago, so. Great. Yeah.
A
So I'm, I'm still hoping to. I imagine it's going to work out. It's just, you know, know it's a timing thing, asking for a lot of his time.
B
And I'll say this, he's the busiest man that I've ever met in, in my entire life. And he like, he eats, sleeps and breathes curing type 1 he actually runs a couple of trials through University of Chicago that are working on curing type 1 from different directions. So the Eladon is just one of the ones that he runs and he has a bunch of patients that he's gotten off insulin various ways. And so he's kind of, to me, one of like the, the front runners like at the forefront of this, this whole thing. He is like a genius when it comes to this and he is so involved in patients lives. He has my Dexcom on his phone that he like monitors, especially those first few weeks after transplant, watches blood sugars, you know, all of that good stuff. So he's probably the busy. I don't think he eats or sleeps. I've never seen him do either. He's just working all the time.
A
I have to tell you, I just make a podcast about diabetes and there are days when I look up and go, did I eat today? I don't think I did. So it happened to me yesterday. Arden's like, are you okay? And I'm like, yeah, I'm. I tried to eat earlier and it didn't work out. She goes, what does that even mean? And I was like, I don't know exactly. But you know, it's 4:30 in the afternoon now and I'm working on my breakfast, so. Well, this is quite a thing. How has it changed your. I mean, it's only been a month and you're not all the way there yet, like, so I was going to ask you how it changed your life, but instead I'm going to ask you, is there a lot of anxiety that it's just going to stop working?
B
I do have anxiety about certain things. I don't have anxiety that it's going to necessarily stop working. The first patient who went through the trial has been completely off insulin and like living her absolute best life. Her name is Marlena. She's a lot of fun and. And she's been off insulin for like 18 months. Numbers are still great. C. Peptide's still great. Like she's just not diabetic anymore and lives like she's not diabetic anymore. I don't really worry as much about it, just like all quitting and falling apart one day. The Tego does a really, really good job of protecting those islets. So I don't stress about that. There have been some unexpected changes that kind of came with post transplant and again, I'm not even fully off insulin yet. But.
A
But Kati, you can climb walls like a spider now, right? Come on.
B
Yeah, it's made me, it's made me extremely gorgeous. And since this is a non camera interview, I look like a supermodel now. Scott. It's crazy. No, it's, it's the craziest part to me of all of it is I obviously getting the adult cell transplant, curing diabetes, you realize that you're not going to have those high highs anymore. And I don't. I think the craziest, most unexpected part, part that I had not thought through was not having lows anymore. So when you get an islet cell transplant, you're getting those, the that beta cells which make your insulin and you're also getting the alpha cells which makes your glucose. So a non diabetic body is constantly doing that checks and balances on keeping blood sugar in range. So the person who's been doing that for me the last 13 years has been me. When I get high, I treat that. When I go low, I treat that. So one of the craziest part about getting the islet cell is that, you know, used to, I would go low a lot, especially during the night or when I'm working out or all of that. And Dr. Rakowski, when he cleared me to start exercising again, he was like, hey weight, it's gonna look like you're going low when you're exercising, watching your Dexcom. If you start to go low, don't do anything. Don't drink juice, don't eat a glucose snack, don't eat a pack of gummies. Your body will fix that. And there was that moment in there where I was like, I know this man wants what's best for me. But now I'm starting to think he's trying to kill me off. Because for years, right, like you see those double arrows down and you're like, holy crap, it's, it's panic. And he has been right. Like, I worked out for an hour this morning and never went low. And I've been out bike riding with my kids and I don't. So I don't go low at night anymore. If I wake up and eat in the night, it's just because I'm hungry and need a midnight snack. So not going low has been by far the most unexpected and best part of this trial for me so far.
A
Next question. Think deeply about it so that you don't think I'm crazy. Okay?
B
Okay.
A
Is there anything about having type 1 diabetes that you miss?
B
Let me think.
A
I've heard people talk about it being so ingrained in who they are that they wouldn't know how to give it away. They're worried.
B
So there's nothing specific that I would miss about having type one. I will speak to the idea of it being so ingrained. You know, the research team said, you know, once we pull you off insulin completely, then, you know, you're just done. You can stop wearing your Dexcom.
A
But.
B
But my. My cgm. My Dexcom has been what has been keeping me alive for the last 13 years. And so I literally looked at them, and I was like, you can have my CGM when you pry it off my cold, dead body.
A
I've been wearing this for a while. Thank you.
B
I'll be wearing this for a while. Like, it's just. It gives me that sense of, like, control. And it is such a habit to just check it, like, all. I mean, I have it on my watch. I have it on my phone. My husband has it on his phone. And so, you know, that sense. You control a lot of things. Diabetes kind of turns you into a control freak. And so that part of my personality will be interesting to try to unwind over the next few months.
A
Where did they get the cells from? Is it pigs or is it humans? Where do they get the. Your new. Your new engine in there.
B
The new engine in. Yeah. So these are actually. So they're. They're cadaver donor islet cells.
A
I'm sorry. You said that earlier. I apologize.
B
Yeah, that's fine. Yeah. So these are. And you're not confused. There's actually several different trials going on using OC of the things that you just named.
A
Well, Katie, it's not that I'm not confused. It's that Gemini wasn't confused. It understood that that was. I didn't really. I want. I want people to be either very impressed or just angry at me to know that I really do not prepare to make this podcast. Whether it's somebody who just got a transplant, isn't using insulin anymore, or just somebody who wants to come on and talk about their life. I really do find that the course of the conversation lets out the information that ends up being most valuable to people. Like, I don't like coming into these conversations with a lot of background knowled.
B
Well, that's great. You're asking the questions that, as people, like, watch my videos, like, these are the questions.
A
People don't know what the hell they're talking about. That's me. I just happen to have a podcast,
B
the perfect podcast host. So, yeah, so these islet cells in this particular study are from. So it's people who have passed away that were organ donors. Okay. And so when. I mean, it's. It's just like somebody who's on the list waiting for a match for a heart or a match for a kidney transplant. I was on the national donor registry waiting for an islet cell, and typically, the ones that they use are from pancreases that, for whatever reason, might not be good for a full pancreas transplant. They'll take those, and they actually bring them into the lab at UChicago. They kind of. I'm sure there's a medical term for it, but they mine all of the islet cells out of there, and then that's what they use in the transplant.
A
Okay.
B
Now, so that's what we do for this one, because in a clinical trial, you're always trying to test one thing, like. Like the Tega Probart, the trial drug. That's our variable. And so you. There are other trials that are out there testing islet cells derived from pigs, testing islet cells grown from stem cells in a lab, but we're not using any of those. We're using islet cells from a known source, because if anything goes wonky or if it goes super well, we need to know that that's the Tego and not another thing as well. So there's. There are several different studies out there testing lots of different other pieces to the puzzle, but these are from deceased donor cells.
A
I see. Wow. Geez. All right, Katie, listen. It's exciting. You don't have diabetes anymore. Is that how we think about it, by the way? You don't have diabetes anymore, or how do you think about it?
B
I think I'll finally process. I don't have diabetes anymore. Once they fully take me off insulin, that'll be an odd day for me. Like, the first time that I leave my house to go somewhere without insulin pins and a glucometer in my purse. I think that will be the day that I'm like, I really don't have diabetes any.
A
Also, please don't let anything happen to you, because I don't want it to be like one of those bad movies where, like, a truck is coming at you through an intersection, and you're like, oh, come on. I just got rid of my diabetes.
B
Yes. Yes. So it's funny, you know, being on social media, you know, I will say this. The. The type 1 diabetic community, we are, like, the most, like, suspicious, cynical community on the planet. Why do you think that doesn't bother me? Like, when people comment on stuff and they're like, that this isn't true. She's. She's lying. That's not real. I'm like, listen, you're cynical, and I respect it because we've been promised a cure for years and years and years, and nothing ever happens. And so I totally. I do not get offended. It makes me giggle when people post stuff. But I have gotten. I've been posting online just kind of about my journey, and some of those have gotten a lot of people in there. And then I have people, more than one, that have commented or sent me a private message. They're like, literally, hey, girl, listen, I'm excited for you, but like, like, be careful, because Big Pharma is not gonna like what you're talking about.
A
They're coming for you, Katie.
B
And then I had one guy message me, and he was like, hey, listen, you need to be careful, because the insulin manufacturing companies are not gonna like what you're talking about. And so now there's that part in my head, like, there's all these conspiracy theories out there, and I'm like, man, I hope for multiple reasons that I don't, like, go missing or die suspiciously, because we will have like, 2 million diabetics calling the FBI, being like, I know who did it. Write this name down. Eli. Lily. That's who it was.
A
If I fall down a hole, a bunch of crazy people are going to go crazier.
B
Yes, yes. So anyway, that's the conspiracy theory, and the cynicism is. Is all part of it, and that's okay.
A
Can I tell you, I don't think that's got anything to do with diabetes. I. I think it's just people. People in general. Yeah. And then it falls into slottings like this. Technically speaking, you know, letter of the law, rule of the word. They didn't cure you.
B
Right.
A
They. They shut off your immune system and jam some new cells inside of you. So.
B
So yes and no. So this is what's called. And I always try to make this distinction so people don't get confused. In a perfect world, a cure would look like a pill that we all take one time, and then we don't have diabetes anymore.
A
Right.
B
That doesn't exist. And I don't think that's going to exist probably for a very long time
A
now.
B
Is a functional cure. And so I am trading diabetes, which, you know, I will not. Do not have anymore. I am trading diabetes for a. For taking this different type of medication, this Tega Probart. I will have to do the Tega Probart is that CD40L, I will have to take that every. Right now, every 21 days. I think that will change. But that is something. Until they come out with something newer or different that I will have to take that. That for the rest of my life. And I have people that comment on my videos and they're like, but that means you're. You have to take a medication for the rest of your life. And I'm like, right, So I have diabetes, so I am already going to take a medication or two for the
A
rest of my life. Let's not dig too far into people's inability to think out complicated issues, okay?
B
Yeah, well. And most of the time it's not. And so it's funny, the. The comments that I get are the messages from people that are like, I would never trade one for the other. You know, I. I would never want to tie myself to taking a medication for the rest of my life. I'm like, you just told me in one sent sentence that you are, do not have type 1 diabetes. Because that's not how our brains work at all.
A
What you just explained to me right now, I want to be clear. I would go outside and beat up an old lady to give to my daughter. Do you understand? In front of a television camera, knowing they were going to put me in prison afterwards, I'd be like, they're telling me I have to beat up this old lady for my daughter to get this. So, sorry, Mama. It absolutely is a huge deal if this ends up working the way you're talking about it right now. Now, just the. The immune suppressant side of it is. Is incredibly exciting. Like, I can almost cleave out the idea that you. You're not going to need insulin anymore and you're not going to get low anymore and all that other stuff that comes with it and just tell you that the immune suppressant part of this is really, really exciting.
B
And it's cool to think about the various things. You know, what if the TEGA is the type of thing that you could take and it would fix multiple autoimmune disorders that you have? Like, how incredible would that be?
A
The number of things that I believe that GLP medication might have changed for my. For me personally, is insane.
B
Oh, yeah.
A
Or to watch it work in people with, you know, with my daughter or people with type 1 diabetes or people with type 2 diabetes, like, that's. That's nuts. Yeah.
B
I'm a huge fan of glp. I think it should be, like, standard of care for, for all people with type 1 diabetes. I did GLP a couple years ago. Obviously, I'm not now because it would affect the trial, but I was a huge fan. The one issue I had with having type one diabete being on a GLP was getting insurance coverage. Yeah, yeah, they'll cover the heck out of it if you're type 2, but if you're type 1 or 1.5, they're like, nah, you're. You're too thin.
A
There's already ways around that, Katie. Don't worry.
B
Yeah, yeah. Oh, I found my. I found ways, Scott. I found ways. But, yeah, it was. That was the. The big issue. But, yeah, huge fan of GLPs. I think that should be talked about more in the type 1 community, because the results that I had from that were phenomenal.
A
Don't worry about it. I'm talking about. I've been talking about it for years, and I. Yeah, I took some. I took some crap over it for a while, but again, it's more about. What you were talking about a second ago is people just have pre, you know, conceived notions about, like, well, that's not for Type one. You can't say that out loud. Everything is scary. And I'm like, all right, just everyone slow down. Yeah, we found a lot of people with type 1 diabetes that seem to also have insulin resistance that might be separate from their type 1 diabetes. And when you cut that away, I. I will say over and over again, my daughter's a great example. She does not need it for weight, and she doesn't even need as much as is in the lowest dose of Manjaro. The pre. You know, the. The. The pens. But what it does for is drops. I'll give you the numbers real quickly. It turns her insulin sensitivity from without GLP to about. It's usually about one unit moves or 40ish in that range to one unit moves are more like 95. 5. That's crazy. In and of itself, it's crazy. Yeah. Her carb ratio goes from one to four and a half to one to like nine, one to ten, depending on the time of the month. And her basil goes from like 1.1 an hour down to like 0.65.
B
Yeah. Yes. It's a. It's a huge thing. I'm so glad you're out there talking about it. When I talked about it, I talked about it quite a bit on. On TikTok. And I would have people that would. Would comment and be like, like, you need to stop taking that. You're not leaving enough medication for all of the type twos who are the people that actually need it. And I'm like Katie, again, responding to that. Thank you so much. This is not a diabetes competition.
A
Thanks. It's, it's also boring to me at this point because to move forward we always go through the same transitions. Like, right. Like something happens and then you go, oh, no, but now there's not enough for this. And no, oh wait, no, we made enough, it's fine. Or you know, it's the same thing with AI self driving cars. Peptides probably, you know, first everybody gets scared. There's a group of people who are just more adverse to being scared. There's. They're like, oh no, don't break a rule, don't. You're going to kill us all. Like that part. And then eventually nobody gets smacked on the wrist. And so that calms down all the people that went to parochial school. And then not everybody dies and everybody goes, okay, I guess it's going to be okay. And then, you know, and then you move forward a little bit. And by the way, way, maybe one of these things is going to blow the world up one day, but whatever, right? Like, let's keep moving, you know what I mean?
B
Yes, yes, yes.
A
What you're talking about right now is, is absolutely fascinating and should be exciting to everybody.
B
Right?
A
Do I think six months from now you're not going to maybe call me up and say, scott, I'd like to come on and talk about the massive amount of depression I have from flying back and forth to Chicago every 21 days. It's possible. Right? But I would also think that Peter will one day go, hey, why don't we do just send the medication to you and you can, you know, get it infused here like, you know, at some point having. And I think you know what I mean?
B
And you're dead on. You're dead on, Scott. I think that's where we're headed right now. I have to go to the lab and Again, I'm Cohort 1. I'm one of the.
A
You're breaking ground, Katie, is what you're doing. And everyone should.
B
Thankfully they're not going to like ship me Tego in a box and be like, hope it makes it there. But I do think that, that you
A
know, there will be some chocolate in with.
B
Yeah, I would love that your new islet cells will totally take care of this. Eat up, buttercup.
A
Yeah, yeah.
B
So I think there will be, you know, a time when, you know, number one, you can take the Tega less frequently and then Number two, there will also be a time when, yes, it will be. Maybe it's a local lab or doctor's office or hospital that you go to locally to get your Tego infusion. And then eventually from there, maybe it moves into the subcutaneous injection. And so when you walk to the fridge once a week to take your Ozempic, you can also take your Te. And, you know, I think it'll. It's really moving more towards, you know, the drug is working. How do we make it reasonable for people's lifestyles? Everyone in the country can't fly to UChicago 20 every 21 days.
A
You have to, like, as exciting as this is for you, and by. By gosh, I'm very, very happy for you. It's not functionally going to help everybody immediately. Can you imagine if, you know, a million people with type 1 diabetes were flying to Chicago? Poor Peter would be dead in five minutes.
B
Oh, gosh, yeah.
A
He'd be exhausted. And you're getting to see it because people are able to go out on social media and talk about it, but you're looking at the beginning of something that normally you don't know about till it becomes more public. The GLPs are a great example of that.
B
Right.
A
My wife worked at Novo Nordisk ten years ago, and she came home one day. I've said this in a number of places, but it fits here. She came home one day and said, hey, one day there's going to be like a shot or a pill and people are just going to lose weight. And I was like, what now? And she goes, I just saw a bunch of safety data. And she's like, we have this type 2 medication, but it's really knocking weight off of people, too. Wait till you see what happens 10 years later. I was taking it. 10 years, right. What I'm telling you is that, you know, a decade before I lost the weight I lost, that drug existed. They knew how to make it it, and they were working on it. This is going to be a similar situation. Like, you're going to have to source all the cells. You're going to have to. Everybody can't get IV infusions to keep this going forever. So they are going to have to figure out a way to deliver it subcutaneously because you're going to need to do it by yourself at home. Right. And then, by the way, then you all got to go get the procedure.
B
Right?
A
Right.
B
Yeah, yeah. And I think that'll be interesting. So, again, I try to tell people the process that I'm going through is a lot more involved than what this would look like for the general public.
A
Sure.
B
Number one, there's a lot more testing and monitor monitoring involved because they are getting data from me all the time. But then also, you know, we are kind of roadmapping out what this can look like, what works. There are things that they do for me as patient nine they didn't know to do for patient one that, you know, made things easier for me. You know, I think you're exactly right. The DLP is a perfect example of kind of how that roadmap goes. I think the other cool part, I try to tell people, like all of these different trials that are happening, and there are actually so many right now that are happening that are really excited. I don't look at them as competitors, I look at them as collaborators. So maybe the eventual functional cure for type 1 diabetes is that people get islet cell transplants. And we can do that on a massive scale because one of these companies that's working on these lab grown cells or these pig derived cells, maybe one of these companies perfects that to the point that we can mass produce those. And then there's not a waiting list like there is on the typical organ transpl, all of these type 1 diabetics. So we can mass produce those and then protect those with the Tego, which you can take in shot form at home. I think we're just beginning to see the evolution of what this thing will be. But it's so important to talk about because there's not as much coverage on this stuff as there should be. And diabetics, more than I feel like any other community, really live without a sense of hope. I would have told you if you had asked me, like, like even five years ago, even three years ago, do you think you'll see a cure for type one in your lifetime? I'd have said no. Like, flat out, I would have looked at you and said, nope. And then here I sit post islet cell transplant on this drug, feeling the best I've felt in a decade and a half because there's no side effects and my glucose is in range all the time. So here I sit, functionally cured a couple of years later when three years ago I would have looked at you and rolled my eyes and told you, no, it'll never happen for us.
A
And not taking a fistful of pills every day, that's got almost more downside than losing the, you know, getting rid of the diabetes has upside.
B
Right.
A
Because I've interviewed Those people before, by the way, who have gotten transplants and then take a lot of anti. You know, they've had pancreatic transplants, stuff like that. And it's not a fun road after. After that. Yeah.
B
And so the. So what's funny about that is. Yes and no. I actually do take a fistful of pills right now because.
A
Because what are they?
B
And I'll walk you through them. So it's not forever, but it's post transplant. So when you have. Because it's major surgery. So when you have the thymoglobulin, when you come off of that, you go on my fortic, which is the. The brand name for my acid, whatever it is. So you take my 40s, which is, you know, kind of a low. It's a lower risk immunosuppressant. And it's like a pill in the morning, pill at night. So you do my fortic and then you do. I'm on. They kind of built me a fake immune system. I'm on an antifungal, I'm on antibiotic, and I'm on an antiviral. And the reason for that is because I am taking someone else's islet cells, their organ, piece of their organ, out of their body. Body. And they transplanted that into my body. So they test it for all these things. But when you do something like that, it's not just the risk of, like me getting an infection, like during surgery in the hospital and things like that. It's like, what if that person was exposed to something that I have never been exposed to. And now I've literally just taken that and put it inside the middle of my body. And so. Right. And so that I'll be on for.
A
Yeah, it's the 1400s and somebody sailed somewhere and killed everybody by sneezing on them. You don't.
B
Yes. You don't want that to happen. Which again, people way smarter than me have. Have figured all this out. And so for about three months after transplant, I have to stay on all of those medications, and then I will stay on the. My fortic moving forward as well. So that's my pill in the morning. So I do a pill in the morning, I do a pill at night, and then I do my infusion every 21 days.
A
I take vitamin D every day. It's fine with me.
B
I take a woman's over plus 40 vitamin as well.
A
So, I mean, honestly, in my mind, it is really just a vitamin. It's something your body's lacking for whatever reason, and you're fortifying, fortified in your body with it. Like, who cares if it's vitamin C, if it's vitamin D because the sun went down too much or if it's a GLP because blah, blah, blah. Or if it's this Tego so that you're like, who cares? Like, do you know what I mean?
B
Right.
A
If your body doesn't have all the supplementation it needs and we can find a way to. To add it pharmaceutically and look at the change in your life. Listen, Katie, you don't know me. I'm 70 pounds lighter than I was two years ago.
B
It's amazing.
A
My life is functionally like you talk about. Functionally. My life is completely different and all for the better. And even if I had a side effect on the way to it, to your point, I didn't care. People were like, isn't it messing with your GI system? In the beginning it was. And guess what? Don't care. Care.
B
Yeah.
A
And then that leveled out eventually, like, right. And I even take people's arguments about like, you know, well, it doesn't work for everybody. Using the GLP as an example. That's terrible. I wish that thing helped other people, but we're not going to get to the next thing that's going to help those people unless I act like a guinea pig here. And if somebody else didn't act like a guinea pig 10 years ago and there wasn't a bunch of people who tried rebelsis forever and it didn't work out really well for them and all the things that have to go in order so that humanity can figure out another step. If you want to see how easy it is to trip something up. While you and I were talking, I emailed Dr. Wachowski's assistant and I said, hey, can we like, pick this back up again? Because the last email I had from him was like, hey, he has surgery. We have to move this. Then nobody picked it back up again. I didn't think to respond back because the guy seems busy to me and I thought he'd get back to me when he needed to, but it turns out it looks like it's as simple as his admin changed to a different person.
B
Yeah.
A
And so that ball got dropped for four months. And I think that's actually an interesting way to think about all this. Like, it's a lot of human beings trying as hard as they can to move something forward. There's going to be a lot of fits and starts. You have to keep doing it, and eventually we're going to get to the place where you're like, oh, I inject this thing in my belly, which I. I'm going to do today, and I don't get fat, right. And not because I was eating all the food or I wasn't disciplined person or who knows? There's something. My body doesn't work right. I found a way to supplement it better. Your body, you know, didn't work, right. Suddenly you have to take insulin. And now someone's going to come in and say, hey, look, take a little bit of this J. Here, some of these cells. Take a little bit of this. Guess what? You're all good, on your way again, right? If that's not what we're looking for, I. I misunderstand the idea of humanity. So, yeah, I'm super excited. And no downsides. You can't sit here and tell me, me, Scott, yes, go do it if you could. But this is gonna happen. You don't have any feeling like that right now. Yeah.
B
So I. That's one of the questions I get asked most often, because I think when you hear the term infusion, you know, people think almost like chemo. Like, what are the yucky side effects? And, like, I'm sitting here telling you. And the other patients would tell you this as well. Like, there are none. I could not tell you. Like, leading up in the couple of days before it's time to go get my transplant, I don't, like, feel sluggish, like, oh, I need Tego juice when I'm getting the, you know, winding down
A
at the end or anything like that.
B
I can feel the islet cells dying. And so, like, there's nothing like that. It doesn't give me low energy. I don't have a headache. It hasn't given me rashes. You know, my toes aren't numb. Like, whatever. The weird thing is, I think people would almost feel more comfortable if I was like, you do the infusion, and it does give you a bit of a headache, but it wears off. People be like, okay, okay. And they're very suspicious when I'm like. Like, it's literally like, I'll get my Tego infusion and then, like, leave and go eat lunch and, like, hike around Chicago. I mean, I. It could be saline in the ivy for all that.
A
I know life's too short for me to worry about what the people with the tinfoil hats think. And I'm not saying they're wrong about everything, but I don't care.
B
Yeah.
A
Like, let's just keep going. I don't think Someone's going to come pick you off because you don't have diabetes anymore.
B
I mean, we'll see. We've talked about. On this podcast.
A
So if I do cats out of
B
the bag, it's up to you.
A
Yeah, the cat's out of the bag. I think taking you out, it's not going to really do it. Do anything for the, for the overall plan.
B
Right.
A
And you know, then, though, people make the arguments about, oh, this industry is going to lose a bunch of money. Guess what? Another industry is going to make a bunch of money, and they'll, they'll fight with them. Don't worry. There's a whole way the world works. You don't completely understand if you're just living your life like a regular person. So.
B
For sure, yeah.
A
How long do they does this cohort of people, and you said there's more than one, right? There's a group of 10 and there's other. Other others, yeah.
B
So there's a group of. Tim, I'm in this first cohort. And then they haven't started the second phase of the trial yet. And I think that's set to start sometime this year. And I believe, and I may be wrong on this, I think this second phase of the trial that they're starting is for people that have type 1 diabetes and some form of kidney dysfunction.
A
Okay.
B
Because people with kidney dysfunction would typically not be able to have a. An islet cell transplant because they could not be on tacroline.
A
Ah.
B
So the TECO is really exciting because it's actually opening this type of procedure up to a whole category of people that before would not have qualified. So that's the, I believe, the, the next group that they're testing. And then, you know, after that, we're, It's. We're pushing for FDA approval. Right. And so the FDA will tell Dr. Rakowski what they want to see, and then we'll open it up to more people and, and run numbers for that. And eventually the goal is to push through, get FDA approval, make it the standard of care that insurance covers, and then be able to get it out to the masses.
A
Let me be a wet blanket for a moment for everybody, because I abhor something that I call the diabetes cure season, which is when all the doctors and the, you know, the researchers put out their articles and get interviewed so they can point a light on what they're doing so they can raise more money to keep doing it. And that a lot of people who have diabetes get in that, like, oh, it's almost Over, Over. And then I get very afraid that people aren't going to take good care of themselves because why take care of myself?
B
This is almost cured next week. Right?
A
Right. It's not going to be next week.
B
Right.
A
I'm going to tell you all that I interviewed a re. I interviewed a scientist so long ago, I didn't have a podcast. It was for my blog. And he was talking about encapsulation. A packet, a pocket, a packet, a packet, a pocket. A packet full of cells that they would slip under your.
B
Was it Cernova?
A
I forget which one it was. Merit tax, maybe? Here's the thing. Doesn't matter because he explained the whole. Yeah, well, are you using it right now? Because it was like 15 years ago. Right. So like maybe some ideas from it have transferred to something else. And God bless everybody should be trying as hard as they can. But my point is, is that he explained how it worked. They were just trying to get it into testing. It got into testing. Eventually, I think one of the companies went out of business. Like, oh, I don't even know. Right. But what I'm. My point is, is that he told me on that day. Day, if we had it all worked out today, if it was FDA approved, if we knew exactly how to do it, it would still take us 10 years to do it on mass. Don't get too excited right now. Like, you know who should be excited? Katie. Katie and her family. They are excited that you got into a time machine and you went into the future.
B
Right.
A
You know what I mean?
B
Right.
A
And. But for the rest of you, you're not getting Tego next week.
B
Week.
A
Calm down. Keep pre bolusing your meals. Okay? Change your settings, make sure you're okay.
B
Go ahead and reorder your insulin pumps from the pharmacy.
A
Put your glucagon in your bag when you leave. I don't want you having a problem while you're out. You don't have something to do. Keep telling your friends how to help you if you get low. Like you. You're gonna have diabetes for a while. But this is the most complete idea I've heard so far.
B
And that's exciting one that's been tested, Scott, and more than likely like one or two people.
A
People? Yeah. Like I once had a lady on who did the. The implantable pouch. She didn't even know if she actually had the cells or if they just. If she was like a placebo. Which by the way, bummer, because they still cut her open and stuck the pouch inside of her.
B
Yeah, I Would that. That would make me absolutely furious. Like, if you're doing a major surgery like that, so help me, you better give me the cure, man.
A
Well, not only that, but she was getting benefit from it, and then they were. She only was allowed to keep it for a certain time, then they were going to take it away from her.
B
Oh, gosh, I can't. I can't imagine that.
A
I told her I'd get on a plane, I'd leave the country.
B
100%.
A
Like, yeah, but not the point. The point is, is that I've heard a lot of these things over the years, and there's pieces of them that always sound like, oh, that part makes sense, or, you know, like, the idea of, like, we can encapsulate the cells that the. The. And I was like, I don't know if that. I. Okay, but I don't love it, you know, but now suddenly, this is a. I mean, I. I'm going to make a T shirt that says Tego. Let's go. Because I think. I think maybe that really is the key to this whole thing, as far as it sounds from your story.
B
Yeah. Yeah, for sure. And it's been interesting because since I've. I've been talking about this, there are people that are doing other really cool trials that message me, and they're so. There was a lady that I met. She's in the trial. I don't know what company's doing it. She's in a trial where they're taking islet cells and implanting them into her eyeball. Because, you know, your eyeball runs on a different immune system from the rest of your body.
A
Get out of here.
B
Here. Planting islets into her eyeball, and then she will take immunosuppressant drops just in that one eyeball, and it's in, like, the early phases of testing. And I was like, you can pretty much count me out on any study that's going to play with my eyeballs, but good for you. Thanks for doing it. And if that ends up being a cure for everyone, you know, you're my hero.
A
Katie, you have my email address. Please give it to her.
B
Let me know how that pans out. I'm pulling for you. I talked to a lady who did the. Whatever it's called, the porcine, however, the islet cells that they're trying to derive from pigs. She did that. It's taking, like, typically six to 10 months before there's any sign of, like, glucose change. It's definitely not in the cure phase yet, but there's a lot of really cool stuff out there. The Tego, obviously, is the. You know, I've researched all of these. The TEGA is the one that I think is. Is closest to the forefront of actually really being a widely available functional cure for everyone. But, you know, I'm happily wrong. If somebody invents a pill that cures all autoimmune diseases tomorrow, I will, I will take and sleep like a baby. Yeah.
A
It's just wonderful story to hear and I appreciate you sharing it with me. I mean, absolutely worth an hour of time to sit and chat about this. This is the Eldon Study out of the University of Chicago, is that right?
B
Yes.
A
Okay. And say Peter's name in case I say it wrong.
B
Okay. Piotr Wachowski.
A
Okay. Again, I don't even know his first name. I am gladly and happily here hearing your story. Sorry. For all of you who know more about it than I do and think I didn't answer the right questions, you can all go start your own podcast and make it popular. Good luck. I just, I did my best here. I'm going to. I will tell you this. You've piqued my curiosity. I'd like to say a few things. A. I would like you to use the link I sent you you and reschedule to come back on in six months if you're interested.
B
Okay.
A
I'd like to hear a follow up about how you're doing. And if you know, 1, 2, 3, 4, 5, 6, 7, 8, or 10, please send them my way. I want to hear from the Eyeball Lady. I am happy to have all these conversations. I would love to hear more. The eyeball lady, especially just because. Wow, let me hear about that. I think what you just said about her makes such a good point that you don't know how this is going to end up working. Working the day. It actually works. Right? Right. Because again, 15 years ago, we're gonna make a pouch and we're gonna put it under your skin and it's gonna be great. And you're doing what you're doing and she's, you know, I mean, stem cells in my eyeballs and then drops to like. Okay, you know, like, you. You have no idea what's gonna happen. Maybe they'll install a portal in your arm and you'll just open up a little hatch every day and stick the pill. Like, I don't know where it's gonna end up when we figure the whole thing out. But as these ideas are coming together, like, if you're not Paying attention to, to peptides like GLPs. If you're not paying attention to new immunosuppressants like Tego. If you're not paying attention to the idea that eventually, like, they've, I mean, I'm assuming that these researchers are now using, by the way, I'm assuming because somebody's already told me they're using AI to, like, crunch their data, and it's happening much quicker than it has in the past. So instead of having like 15 research students, you know, whacked out on caffeine and, and, you know, whatever else they have to take to stay awake and try to keep their brains going, these, you know, the AIs are keeping track of things. Wait, wait till they start talking to each other and going, hey, listen, if we take this piece from the eyeball thing and this piece from that thing about, you know, you don't know where this is going to end, but it's moving in the right direction and it's moving a lot faster than it used to.
B
So, absolutely, for the first time ever, I really do look at this young generation of kids, and I, I, I do not believe that they are a generation that will have type 1 diabetes. Their whole lives could happen for them, you know, like, yeah, I think it's gonna. And I feel, I feel very confident about that. Can I tell you exactly what that looks like or when that will be or how much that will cost? No, I can't. But these young kids getting diagnosed, you know, kids like your daughter, I, they will not. I truly don't believe they'll have diabetes their entire lives.
A
Heed what Katie told you. Keep your stuff together now, because if you had any number of different issues. Issues.
B
Right.
A
They wouldn't have done this with you.
B
Right?
A
Yeah. So, you know, be careful. Take good care of yourself. Do your best. You know, I think the psychological part of diabetes is still ignored. We try really hard to talk about it here, but, you know, you got to support your mental health as well along the way. Katie said there's a lot, a lot of stuff that she used to have to do that she's not doing anymore. Right. Wait till you see, like, I imagine you're going to have a real catharsis at some point, like a moment of, of when you realize the depth of effort that is not being paid anymore to diabetes. I wonder. I think it's going to hit you pretty deeply, and I can't wait to find out how exactly. I hope it doesn't crush you, because it could.
B
Yeah, it's interesting to unwind things that I have done and believed and become like part of the core of who I am. Walking through this process and unwinding some of those has been a very interesting and unexpected. The mental piece is a very unexpected piece of this process.
A
100%. I can't imagine that we're even a tiny percentage in understanding all the impacts this is going to have on you for sure. Okay, Katie, thank you very, very much. I can't thank you enough for doing this. I really do appreciate your time.
B
Absolutely. Thanks so much, Scott. It was a pleasure.
A
Thank you. Hold on one second for me.
B
Okay.
A
A huge thanks to my longest sponsor, Omnipod. Check out the Omnipod 5 now with my link omnipod.com juicebox you may be eligible for a free starter kit. A free Omnipod 5 starter kit at my link. Go check it out. Omnipod.com Juicebox terms and conditions apply. Full terms and conditions can be found in@ omnipod.com juicebox Arden has been getting her diabetes supplies from USMED for three years. You can as well usmed.com juicebox or call 888-721-1514. My thanks to USMED for sponsoring this episode and for being longtime sponsors of the Juicebox podcast. There are links in the show notes and links@juicebox foxpodcast.com to us Med and all the sponsors. 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 subscribed 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 want to 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. If you're looking to meet other people living with type 1 diabetes, head over to juiceboxpodcast.com juicecruise because next June. That's right, 2026, June 21st, the second juice cruise is happening on the Celebrity beyond cruise ship. It's a seven night trip going to the Caribbean. We're going to be visiting Miami CocoCay, St. Thomas and Saint Kitts. Yeah, the Virgin Islands. You're going to love the Virgin Islands. Sail with Scott in the juice box Community on a week long voyage built for people and families living with type 1 diabetes. Enjoy tropical luxury, practical education and judgment. Free atmosphere. Perfect day at Coco Bay St. Kitts St. Thomas. Five interactive workshops with me and surprise guests on Type 1 hacks and tech, mental health, mindfulness, nutrition, exercise, personal growth and professional development. Support groups and wellness discussions tailored for life with type one and celebrities. World class amenities, dining and entertainment. This is open from every age. You know newborn to 99. I don't care how old jar come out. Check us out. You can view staterooms and prices@juicebox podcast.com JuiceCruise the Last Juice cruise just happened a couple weeks ago. A hundred of you came. It was awesome. We're looking to make it even bigger this year. I hope you can check it out. If you have a podcast and you need a fantastic editor, you want Rob from Wrong Way Recording Listen, truth be told, old I'm like 20% smarter. When Rob edits me, he takes out all the gaps of time. And when I go and stuff like that and I don't know man, 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.
Host: Scott Benner
Guest: Katie Beth Hand (Patient 9 in the ELODON Trial)
Date: March 2, 2026
This episode features a detailed conversation between host Scott Benner and Katie Beth Hand, who is Patient 9 in the landmark ELODON trial—a study aiming for a functional cure for type 1 diabetes (T1D) using donor-derived islet cells and the investigational drug Tegaprobar(t). Katie shares her personal diabetes journey, her experiences before and after the transplant, the science behind the trial, and her reflections on what this emerging “functional cure” means for people with T1D.
Diagnosis Experience (04:44–08:31)
Support Structure and Self-Management (08:31–10:29)
Physical and Emotional Adjustments (10:42–13:29)
Trial Overview (16:43–18:20)
Why Tegaprobar(t) Is Exciting (18:20–20:54)
Procedure & Post-Transplant Life (24:33–27:29)
How the Therapy Works (27:26–34:08)
Safety Profile and Logistics (22:26–23:35, 62:08–63:09)
Selection & Candidacy (31:36–34:08)
Living Without Diabetes (38:10–41:29)
Does She Miss Diabetes? (40:15–41:29)
Public Perception, Skepticism and Hopes (44:02–47:25)
How Soon Could This Be Widely Available? (54:49–56:58, 65:00–67:11)
The Broader Impact: Hope, Caution, and Realism
Other Avenues in Diabetes Cure Research (68:17–69:47)
“I was like fat and bald, which was a real bummer. Fat and bald with a chronic illness, wear these devices all day. I was scared to exercise because it kept sending me low. … I felt, Scott, for those first, probably that first entire year for sure, like my body was not even my own.”
— Katie [11:34]
“The craziest part … not having lows anymore.”
— Katie [39:33]
“Controlling diabetes kind of turns you into a control freak. … My CGM, my Dexcom has been what has been keeping me alive for the last 13 years. ... You can have my CGM when you pry it off my cold, dead body.”
— Katie [40:49]
“I would go outside and beat up an old lady to give to my daughter … in front of a television camera … I’d be like: they’re telling me I have to beat up this old lady for my daughter to get this. So, sorry, Mama.”
— Scott [47:49]
“If you had asked me ... three years ago, do you think you’ll see a cure for type 1 in your lifetime? I’d have said no. ... And then here I sit, post islet cell transplant on this drug, feeling the best I’ve felt in a decade and a half ... Here I sit, functionally cured.”
— Katie [56:07]
Scott threads skepticism, humor, and realism throughout, balancing enthusiasm with caution for listeners—especially parents and people with diabetes—about the actual timeline and reach of these advances. Katie is upbeat, clear, and candid, conveying both her technical knowledge and emotional perspective. Their candid exchange makes the science accessible and highlights the lived experience of someone at the frontier of diabetes care.
Major takeaway:
The ELODON trial's combination of donor-derived islet cell transplantation and Tegaprobar(t) represents the closest thing yet to a “functional cure.” While not imminently available for all, it is a massive leap forward, with almost no side effects and significant lifestyle improvements for participants—offering unprecedented hope to the T1D community.
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