#633 ViaCyte Trial Participant
Scott Benner
Jana has type 1 diabetes and she was in a ViaCyte trial.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, and welcome to episode 633 of the Juicebox Podcast.
Today's show is with Jana, she's an adult living with type one diabetes who participated in a via site trial. So I don't want to get all technical but via site is a company and they take these cells and put them inside of these little like packets and insert them onto your skin and the cells are supposed to make insulin. If that's not exactly correct. I'm not a scientist, but that's the just the vibe. That's what they're going for. And Jana had that done to her. She's gonna tell you all about it now. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan. We're becoming bold with insulin. Are you the kind of person that wants to help? Do you live in the United States and have type one diabetes? Do you live in the United States and care for someone who has type one diabetes? Well, if you do and you are T one D exchange.org. Forward slash juicebox take the survey help people living with type one super simple.
This show is sponsored today by the glucagon that my daughter carries G voc hypo penne Find out more at G voc glucagon.com. Forward slash Juicebox. Podcast is also sponsored by touched by type one, head over to touched by type one.org and find them on Instagram and Facebook. Touched by type one has a mission to elevate awareness of type one diabetes, raise funds to find a cure and inspire those with diabetes to thrive, touched by type one.org.
Jana 2:06
Hi, Scott. I am Jana. I am from Texas. And I am from Northeast Texas. Because when you do interviews you always want to know about accents. Well, people in the larger cities are going to be like she is not from Texas. She's from Arkansas. I am from Northeast Texas. So
Scott Benner 2:28
you're nice enough that it sounds like Arkansas.
Jana 2:31
Oh yeah. Oh, yeah. And but I currently live in Austin. I've lived in Austin for the last 15 years. And and you know, I heard that you wouldn't mind traveling to Austin once this COVID stuff is under wraps. So come on down, we got extra rooms brain garden, bring the whole family I
Scott Benner 2:48
would love to I would I don't I don't know that. Getting in a room and talking about diabetes is the thing that's gonna happen again for quite some time. So and I have to tell you that the other side of it is that you and I will reach more people than I could reach like with this recording than I could reach flying all over the country for months. So you start getting into that situation as well. But okay, so you're not from Arkansas, because is there a problem from being from Arkansas or?
Jana 3:18
No, no, it's just, I'm just saying that you know how you like to. I've noticed how you like to differentiate people's accents, especially when they're from certain states that say rough and rough at the same
Scott Benner 3:33
time like what are we doing?
Jana 3:36
So when people are like she does not sound like she's from Texas. Yes. I'm from Texas. I lived in Texas. Most of my life spent a very small amount of time in the Pacific Northwest. But um, yeah.
Scott Benner 3:49
That's how you got back to Austin. Yep. You went from you're from Northeast Texas then hippie yourself up a little bit in the upper northwest of the country. Then you came back and you're like, Why can't go back to not gonna go to Austin right.
Jana 4:04
Actually, a guy drew me to Austin if you want to be realized. My husband and I met in law school at Baylor in Waco and he graduated a year before me and he lived in Austin and so I came on down to Austin after
Scott Benner 4:22
waco making a comeback. I keep hearing Yeah, Waco was
Jana 4:25
not what it is now when I lived there. So um, yeah,
Scott Benner 4:30
I love that. I don't know if waco is making a comeback. I don't know if it needed a comeback, but I keep hearing it everywhere. So
Jana 4:36
it's not a comeback. Because you would have had to have been something at one point to have a comeback. waco is regenerating itself.
Scott Benner 4:45
Jenny, you're just swinging right away like all right. So what's your connection to diabetes before I get you in trouble with like people who live in Waco, which
Jana 4:55
I'm already in trouble. Sorry, Chip and Joanna? No. Um, I have Have you been diabetic type one for the past 19 years, I was diagnosed in 2002. I was 23 years old at the time. And
Scott Benner 5:10
so yeah, Jana listens to the podcast. She's like, I'll just answer all this stupid questions before he even asks them. What do you think? Alright, so 19 years ago, a fairly long time ago, but you're on the podcast for like a fairly specific reason. So I don't think I want to, I'm not sure where I want to head with this first. So are you? Are you part of the VITA site trial?
Jana 5:34
I am currently implanted with the via sigh Peck in cap devices.
Scott Benner 5:41
Okay, now, when did that happen? It's spring, recently. Spring 2021. Correct. Yeah, right, then
Jana 5:53
that none of the via site PAC incap surgeries happened before January of this year. So the actual implanting of this phase two of this trial didn't start before January of this year.
Scott Benner 6:09
Okay, so you're in a trial, it's not. Alright. So my understanding of, of all this, and you'll stop me and fill in the gaps where I'm wrong. This goes back a long time ago, I interviewed a doctor who I think was working for the JDRF back then it was a really long time ago. And he was telling me about, we're gonna put cells inside of this membrane pouch and then put the membrane pouch inside of people and the membranes gonna stop your immune system from killing the cells inside the cells inside are going to make insulin. Is that about right?
Jana 6:42
That's about right for their, for their encapsulated device.
Scott Benner 6:46
Yeah. encapsulated device. And which is that what you have? That's what I have? Yes. They have other stuff. You're saying to?
Jana 6:53
Yes, they have other clinical trials going on with one other product, and they have another product in the making. But yes, it goes back a really long time. And they last night, I decided to pull up a video just to kind of see what some of their first talking about it was. And it was a video that I pulled up from 2014 talking about how they would, you know, plan out this trial and do and whatnot. And it's, it's interesting to go back and watch them talk about that now that you've participated.
Scott Benner 7:25
Did it not go the way they thought it was gonna go?
Jana 7:29
Nothing ever goes the way you think it's going to go especially in speed. You know, things always take longer than you think they're gonna take. And I mean, the last year and a half of our lives, everything has slowed
Scott Benner 7:43
down. Yeah. I just went back to my, my website and, and search for via site. And no kidding. I wrote that article in December of 2014. About encapsulation. Advice. How about that? Wow, that's a long time ago. I, when I was interviewing him, and I remember asking the question, if you had everything you needed right now, like, the science was where it needed to be and materials and blah, blah, like, how long does somebody could get this? And he said, 10 years? And I was like, oh, which is a little deflating. You don't I mean, you're like, oh, that's that seems like a long time from now. But here we are. 2021. And you're, you're you're doing it, so does it? I don't know if I want to ask you if it works yet. Let me know. I'm not gonna Okay. Let me
Jana 8:30
tell you what, what I can and cannot
Scott Benner 8:34
talk about, oh, okay, there's parameters. This is like a date. Go ahead. Tell me, right? Because,
Jana 8:39
I mean, I'm in the middle of a trial. So I can't reveal any test results, or confidential or proprietary information. So I can't sit here and tell you, Hey, this is working, or, Hey, this isn't working. And I can tell you my experiences with the clinical trial and what it's like to, you know, decide to sign up for this and to be cut open and, you know, to decide, Hey, are you going to really be okay, if this does not work, and you've just volunteered your body to science as a guinea pigs. Okay.
Scott Benner 9:14
We'll get through that. And when we get to the end, I'll ask you some slick question about your insulin usage and we'll be fine. So um, alright, what made you want to do this?
Jana 9:25
Okay, so um, I am a little bit of a control freak. And I think that God purposely gives people that are a little bit of control freak type one diabetes, so they have something they have to control all the time. It's not completely true. But yeah, I am one of those people that once to be part of something if I think that my involvement might give me a different perspective on it than if someone else was telling me their experience with it. So this came about through my local endocrinologist office, putting out a Facebook message saying, Hey, we're going to be involved in this, anybody interested? And so they got a ton of response. This was in October of 2020, they got a ton of response and started screening people and whatnot. And I had to go do a lot of research on the ways that the cells within the bio site in cap device are created in order to see if I really wanted to participate just from my own personal perspective. And once I came to the point that I was like, Yeah, I'm okay with this. I want to participate. How am I going to feel about the cat open? I had never had surgery before other than two C sections. So I had never been under general anesthesia. And participating in a clinical trial like this. It's one of the most invasive clinical trials out there, because you're going through several surgeries. And so it, it's a thing to wrap your head around,
Scott Benner 11:20
hold on. But don't let that get too far. Before I asked you, you wanted to know where the cells came from, like for your like, personal belief system? Is that right? Okay. Yep. And so you found out where they came from? Can you tell me where they come from? Or is that
Jana 11:33
yeah, and they're embryonic stem cells that via site has differentiated into pancreatic precursor cells. So they have, they have the ability to generate an unlimited amount of pancreatic precursor cells from this one donated embryonic stem cell line that they purchased. So yeah, so they put the precursor pancreatic cells into this pouch. And they let them grow and do as they're supposed to, inside there. And there are three types of cells that can be grown with inside the pouch, which would be your alpha, your delta and your beta cells. And so what what part of the trial is, is seeing what does actually grow, you know, seeing what nutrients and proteins are able to pass through the barrier of the encapsulated pouch, and still keep our immune systems from having a response because they don't let things out of the pouch, they don't let the cells out of the pouch.
Scott Benner 12:52
So it's interesting, your immune system doesn't mind the pouch, it would just mind the cells inside of it.
Jana 12:57
Oh, well, your immune system does mine the pouch there, that's what they're testing to because it's a combination clinical trial. So they're actually testing the pouch, which was created by WL gore. And you, anytime you put anything foreign in your body, you can have a foreign body response. So they're testing for that they're seeing how much of a foreign body response you have to that. And if fibrosis occurs, and totally nig gates, the ability of the cells within the pouch, because too much ribose this happens around the pouch itself. So yeah, it's a it's a combination clinical trial in the fact that they're testing the device, and the cells inside the device, how large is the pouch? Okay, so I had 12 devices put inside of me. And they say that the larger ones, which are the dose finding units are about the size of half of a credit card cut length wise. And then the smaller units, which are known as signal units, and are about the size of your thumbnail, and the signal units are the ones during this clinical trial that they would go in and take out in order to do their continuing research throughout the trial to see how your body was responding to those and you know, cells inside of them stayed alive and and that type of thing. And, and, and so yeah, I had nine of the larger dose finding pouches, and originally had three of the Citadel devices. So they
Scott Benner 14:39
put these in, they stay in for an amount of time, then they go retrieve them so they can do tests on the cells that are inside. Do they look at the surrounding area to see how your body reacts?
Jana 14:50
I mean, of course they do. They're cutting away some of the surrounding area because your body has to grow around the pouches in order for them to vascular rate and perform, you know, so you can't just put something inside your body and expect it to start well, you cannot put this product inside your body and expect it to start working immediately. It has to grow blood vessels around it and, you know, has to get nutrients to those pancreatic precursor cells inside of it so that they will start growing and producing and whatnot. So, yeah, the process that ViaSat chose to do, and in this trial was to implant the three different signal devices and take them out at stages along the way. Interesting.
Scott Benner 15:41
Okay. This just started this spring, but you've had 12 surgeries already?
Jana 15:47
No, no, no, no, I'm implanted with 12 devices. So they put everything in at once.
Scott Benner 15:51
Okay, all right. That's I was like, Yeah, I started wondering, like, did you have to quit your job? Like how much of your life did you?
Jana 16:00
So giving up your life is not something that a clinical trial ever needs to be anything that you have to do for it? Like, this is an extremely invasive clinical trial and you and like, yeah, the first, the first surgery where they put all 12 devices in me. At day three, which, you know, after the car wreck, I always say Day Three is the worst. So I kind of equate that with surgery. Day three, I was like, Why in the world? Did I do this? What was I thinking? This is stupid. This is worse than my C sections. Like just, yeah, just you know, at least when you'd had babies, you got something cute to play with it day three. But, um, but that that was the hardest day, and then getting past it. It only took about a week for me to really get over that initial surgery and be like, Okay, this is fine. The second surgery that I had where they took out and Sentinel devices. Scott, I was practically back to normal the next day, like it was it was kind of knock on wood, nothing, because I don't want to say that and it Jinx everything else in the future. But um, yeah, it was fairly easy to recover from. So my whole point of doing this podcast with you is to be out there giving the perspective of the patient that has gone through at least part of this clinical trial and being like you guys, the only way we're ever going to find a practical functional cure is if you sign up to do this stuff, and it's really not that bad.
Scott Benner 17:54
Okay. So, so the, the, there is a pouch inside of you. Now, that is the thing, they're testing their theoretical theoretical product, and you're waiting for blood vessels to grow around it to see if it works. takes hold. I don't know which words to use here. But I'm right about that. Right. That's still in there.
Jana 18:18
Yes, there are. There are several pouches still inside me. And all of the dose finding units are still inside me some of the ones that were the smaller ones that they planned, you know, to take out along the way so that they could study how those had reacted. Some of those have been removed. But all of the dose finding units are currently still inside me. Gotcha.
Scott Benner 18:39
So some of them have been retrieved for testing, some of them are still inside is the plan for you to keep them? Like, is there a world where weeks months from now or already, you don't need insulin because of this pouch, and they have to take it out of you.
Jana 18:54
So the way that they are hoping to market this product in the future is that these would be devices that are implanted and used for a couple of years at a time. And so you will never be able to produce insulin without the devices being inside you. You know, it's a clinical trial. So they're trying to find that timeline of how long can this really go on still producing and still achieving a goal? Or, or is it a lot shorter than we thought Is it a lot longer than we thought and the the procedure for the portion of the trial, the phase of the trial that I signed up for was for the devices to be inside me for a year.
Scott Benner 19:48
So there's a real world that a year from now, you don't need manmade insulin, and they're gonna call you and be like, Hey, give it back. And I'm assuming at that point you pack up a car bug out and pretend you don't exist anymore and keep it.
Jana 20:04
They'll come find me Scott.
Scott Benner 20:08
Virus like Stormtroopers.
Jana 20:11
Yeah, yeah. So yeah, like, some of my friends were like, so you just go back to well managed diabetes, like, like you were before. And I'm like, I like and you're willing to do this? And I'm like, Yeah, because a cure is, it's what the goal is you guys, and it takes people will be willing to take the proceed to do the procedures in order to get there. Um,
Scott Benner 20:44
well, okay, I'm trying to wrap my head around that right now. Because I feel like I'm a fairly decent person. And I wouldn't give it back. I feel like you would go to Mexico. Out of here, man. I don't know which way I'd go. Catala kind of it's kind of weird right now, I'm not sure where I would go exactly. But I don't I don't know. Like my self preservation would kick in at some point. I'd be like, No, thank you. I, but it would stop working at some point. I mean, that's their expectation about it.
Jana 21:20
That's their expectation. Yeah. And one of the other reasons that I also jumped in this trial. And this is just a me personal reason. I've always thought that, yes, you have diabetes. And yes, it's treated with insulin. But if these actual functioning pancreatic cells got inside you, how much better would your quality of life actually be? Versus just dosing with insulin and keeping your blood sugar at a good level? You know, like, it can't, can you fight that weight gain a little bit easier when you have functioning pancreatic cells? And you're not having to? dose for low? Yeah, no. So yeah, there were some things like that, that made me highly interested in it, that aren't even talked about in this study, you know, and when you participate in a clinical trial, one of the things that I have found the most frustrating is, and they have all their questions, and they interview you at every appointment. But there's not just a general session where you feed back all of your input.
Scott Benner 22:37
Yeah. Does that mean? No, it does, because they're tracking certain things. And if you start saying stuff that they're not tracking, then they got to start tracking that too. And that becomes, and it might confuse them, I guess they're probably laser focused on the stuff they're trying to, to figure out. Can I ask you, I don't really matter, but I'm just interested, are you getting paid for this? Is there some chatter that comes your way,
Jana 23:00
so in most clinical trials, and especially trials that you'll find on like, clinical trials.gov People do get compensated in some fashion? So, um, I am getting compensated a little like, I mean, it's not much at all. And especially considering what all you're putting your body through for this. And my mom, I had previously had participate in some clinical trials that were ran by universities, and she was never compensated at all. So, um, it depends upon where the funding is coming from for the clinical trial. And they, they tell you up front, if you will be compensated and how the compensation schedule is going to work and that type of thing. And
Scott Benner 23:55
is it like, is it like you got a new sofa compensation or just doesn't cost you anything to drive there and the time you miss from work and stuff like that?
Jana 24:04
Okay, so I'll give it to you this way. I really want to have LASIK. I might be able to afford LASIK at the end of this.
Scott Benner 24:13
Nice. Bad.
Jana 24:18
But, I mean, there's a lot of surgery, Scott.
Scott Benner 24:22
Like I see what you're saying a few $1,000 to a handful of 1000s of dollars ish in there somewhere. And, okay.
Jana 24:35
And, yeah, like, um, each little office visit, and I'm compensated an amount less way less than the doctor would bill for that office visit.
Scott Benner 24:49
Do you like steal, steal office supplies while you're there? Like pads of paper pencils staplers?
Jana 24:55
No. Do you know how many times I've walked past the tegaderm and gone man, I just take that off.
Scott Benner 25:03
You got all like nasty in there. You're like give me this and give me this paper towels. I think that lady took our paper towel she said she was owed Well, how long has it been in there now.
Jana 25:17
And since the spring, my devices were implanted whereas they're exactly. Mine are all in the admin everyone that has participated in in this face to a biocide trial, they're all in the abdomen, okay, and so basically, I'm short. So from right underneath my chest all the way to aside my belly button, there are three slits on each side that are about an inch long, top to bottom each. And then they basically fillet you, so they kind of butterfly you, they stick this like scaffold thing down inside that cuts you each direction from that incision, and slide their little credit card like thing in there and
Scott Benner 26:06
so you back up gently. You're not selling it right now. I'll tell you that much. That's really cool that you did that. So it's alright, so they're down your abdomen, number of different incisions that you have scars I imagined that are and they have to be reopened. So you're you were okay with having scars from this is over.
Jana 26:29
I mean, I wouldn't have done it. Yeah, I, um, you know, every scar has a story. This story's kind of unique. Yeah. And I am not a bikini where to begin with. So you know.
Scott Benner 26:47
Like, don't worry, it wasn't ruining my beach, where everything's look at you. How long have you been married? 12 years? Oh, yeah. You don't care if he cares. I see what's going on. It's fine. Yeah, a couple of kids.
Jana 27:02
Probably. I do have a couple of kids. I have a nine year old daughter and a five year old son.
Scott Benner 27:06
People don't understand that 12 year thing that's like your like four years past when you thought about getting divorced and decided not to
Jana 27:15
you know what I have not thought about getting? I did not think about getting divorced four years ago. We were good.
Scott Benner 27:21
Very smart. You to say that out loud. In case he hears this, I get a good job. There you go. No, no, I'm just joking. I'm just saying like, that's, that's one of those moments. Like, if you're if you're married 12 years, you're gonna be married 20 years. You know what I mean? Like, it's that like, not for everybody. But you know, I mean, you hit like a rhythm. How old are your kids?
Jana 27:38
My daughter is nine and my son is five.
Scott Benner 27:42
Do does anyone else in the family have any autoimmune stuff? Oh, they
Jana 27:46
have autoimmune stuff, but not type one diabetes. Gotcha.
Scott Benner 27:49
More garden variety. Celiac, maybe
Jana 27:53
my daughter has a ton of allergies. And she is allergic to dairy, all forms of dairy. She's allergic to nuts, all forms of nuts and seeds. And she has horrible eczema so much so that we are on biologics for it. And so yeah, um, and then extended family. My grandmother had lupus. I have an aunt and a cousin with lupus ton of ants with thyroid problems. I have huge extended families on both sides and I am the only type one diabetic
Scott Benner 28:33
biologics for the eggs method helping.
Jana 28:36
It's been fantastic. What's a call? She's on dupixent We did a year of Xolair kind of off label with Xolair but related so much to her allergies, her food allergies, that they really thought Xolair might be the answer. And Xolair did nothing for her. And then we started dupixent last August and dupixent had only been approved in like May or June for children under the age of 12. So I was really hesitant about putting her on dupixent and it has changed our lives for the better so much Scott like this is the first summer that we have been able to do like the beach in the summer because usually she can't handle the heat because it makes her eczema flare so horribly. You know, we live in Texas, it's hot nine months out of the year. So our lives have really changed a lot in the past year. And I'm very thankful for those biologics that are out
Scott Benner 29:39
there she have hives or anything like that.
Jana 29:41
She has hives regularly. She most recently had an anaphylactic Episode Two what we think was eggs which she's not allergic to cooked in butter at our restaurants a restaurant we go to all the time. It's a restaurant that we have to You know, no dairy. Well, we guess she got cross contaminated somehow. So we had the most scary anaphylactic episode we've ever had. She wound up fainting and yeah, it was pretty bad.
Scott Benner 30:13
Oh my god, that sucks. Okay, I tell you the dupixent PR people are on top of things because when you google Xolair do pics and comes up first well done ninjas as really very well. And by the way, whoever makes Xolair better get on top of that your your SEO game is weak. But yes, so she What is she gets it every month, an injection?
Jana 30:39
Yes, she gets an injection every month. And her allergist has already talked about starting to wane her off of it. And I just begged to keep it for as long as we can like it, which is funny because a year ago, I was so skeptical of it. And now I'm like, You're gonna have to really present me with some studies that say that there are some bad long term side effects if we labor.
Scott Benner 31:01
Yeah. It's it's fairly new technology to Mm hmm. Yeah. Yeah. Well, I'm glad you found something that helps her. Okay. So prior to you doing this study, how were your blood sugar's?
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Like to remind you again that if you're a US resident who has type one diabetes, or you are a US resident who cares for someone with type one, you can do a lot for people living with type one diabetes by taking a short survey AT T one D exchange.org. Forward slash juicebox. This survey is completely HIPAA compliant, it is absolutely anonymous, and it will take you fewer than 10 minutes, you can do it right now. From your phone or your iPad or your computer. I mean, you could probably be laying on the floor while you do it or standing on your head or even probably using the bathroom. These are not hard questions, and you'll be able to answer them. Absolutely easily. It's not going to be like some stumper where they ask you something like I don't know the answer. That's like you're going to know the answers to these questions. It's going to take you fewer than 10 minutes, you're going to help people with type one diabetes, you're going to help research for type one, t one D exchange.org forward slash juicebox. After the episodes that I please go take the survey. If you don't think you can remember, pause the episode, take the survey, come back, listen to the rest of the episode. Anyway, you have to do it. However, you can make it work T one D exchange.org. Forward slash juice box. I appreciate you considering it.
Jana 33:26
I also started looping in November. So this and loop kind of go hand in hand with me at the moment and I will say that the five years of my life between 2016 and now I was not as great of a type one diabetic as I should be. I was on the Omnipod I've been on Omni pod since the summer of oh nine. And but my agencies were in this sevens range, you know 7.1 To I think I got up to a 7.5 at some point. I was dedicating my life at that point to helping my parents my mother had a form of dementia known as primary progressive aphasia. And she was diagnosed with that the year my daughter was born and then I went ahead and had a second child. You know, you start to caring for other people instead of yourself in the way you should. So um, I was in the sevens. And I started looping. I wasn't even on my Dexcom for five years because as I told my husband, I was like, I can't handle it telling me that I'm wrong all the time.
Scott Benner 34:50
Is that how it felt? Yep. Okay. You're in that interesting space where you've had diabetes for 20 years you have come through a different versions of how to manage it. So I'm assuming at some point, your regular an MPH at some point, right?
Jana 35:06
No, I wasn't I have always been. I was like, I was Lantis and human log or no blog to begin with. Okay, so um, yeah. And yeah, actually,
Scott Benner 35:17
I'm sorry. Yeah, I'm sorry.
Jana 35:20
Yeah. 2002 was when I was diagnosed. So I did MD eyes for a couple of years. And back then, and then started on an omni pod. I mean, not on the pod, I'm sorry, a mini med pump. Um, and was on a Medtronic pump for several years and then went on the Omnipod. In the summer of Oh, nine.
Scott Benner 35:40
Okay. What What about your management do you think was off that? created? It made it more difficult for you?
Jana 35:54
I am horrible at Pre-Bolus thing. I am horrible at I'm worrying too much about it. Like, either, either. I'm completely on my game, or I'm like, Yeah, it'll handle itself. Does that make sense?
Scott Benner 36:18
It will, it will handle itself just.
Jana 36:23
Oh, yeah. So and I know this about myself. And that's one of the reasons that I'm glad I'm looping now. And I am still on the master branch of lib. So I'm not even on auto Bolus. You'll you'll cringe when I tell you this. I don't even have a Nightscout account.
Scott Benner 36:39
Yeah, I don't know the Nightscout thing I'm okay with. But the I would go to the auto Bolus if I was you.
Jana 36:45
Yeah. Okay. So you know, when they give you directions, and they say he really needs to have all of this completely figured out before you do that. I'm one of those people that overtakes completely figured out. And so for a long time, I did not think that I had my Basal rates tuned in well enough to flip to the auto Bolus. And then once I figured out that I did, I had started this clinical trial, I didn't really know if I had approval to change things up in that fashion. And then I have been given that approval to change things up in that fashion. So now I need to find the time to remember how to how to write loop.
Scott Benner 37:32
You need a stranger to tell you that you it's okay. If you take some time to take care of yourself. Yeah. I can say that if you need me to,
Jana 37:41
can I just hire you are kidding to be my dad for a few days.
Scott Benner 37:46
For that loop on there, we'll, we'll move the settings around things are working, and that'll be out of here by Monday. I think well, first of all, you should take care of yourself, obviously. And it's nice that you're worried about other people in your life. But you know, you're gonna, you're gonna get through that part and then look up and it's gonna be too late for you. And then you know what I mean? That's then somebody. Somebody's gonna be looking out for you then.
Jana 38:10
And I don't feel like that. I totally don't take care of myself.
Scott Benner 38:16
Like, No, you're a one sees pretty good. You know? Well,
Jana 38:19
I mean, I'm down to a 5.9. So yeah, we're pretty good.
Scott Benner 38:24
I mean, I thought I was talking to somebody in the sevens. And I was like, well, you're doing you're doing pretty well. Yeah.
Jana 38:29
Yeah, I was in the sevens. But what I'm saying is, I started looping last November, and yeah, I'm a 5.9 to a 6.1 for the last, you know, eight months. So
Scott Benner 38:41
I am confused. If you're, if your brain tortures you the way you've described about, like having everything thought through completely before you do it, like how did you make the loop to go into a trial? The Leap I said loop I might have, what is it called? primary progressive aphasia?
Jana 38:59
Just you must have googled that one to
Scott Benner 39:03
pay attention while we're talking. So um, I didn't mean to loop the leap. How did you make the leap to do the trial, if you have that controlling aspect here, nature?
Jana 39:13
Well, okay, so I don't think that there's any product out there right at the moment that they're going to stick inside you and they're going to it's going to make you not have diabetes overnight. So you're always going to have a little bit of control with it, you know. And I trust myself to know what I'm doing as far as dosing that and I trusted them to not overdose you with the cells. So that, you know, if your body's working right, with pancreatic cells inside of it, you're not going to go too low because of the product. The inside you. Um, so my control limit would be controlling the highs. So yeah, I can do that.
Scott Benner 40:10
But the other parts didn't bother you the surgeries and testing and stuff like that, that all seemed okay. Yep. Do you have like kind of an explorer nature to you in general?
Jana 40:23
Yeah, probably. I never would have labeled it that way. I am a heavy researcher. So, you know, one of the things that I really want to encourage people to do if you're interested in any clinical trial at all is, yeah, you're going to find out a little bit about it from the people conducting the trial. But you need to go out there and research everything you can. That is a term that pops up within that information they give you like, when they told me that they're putting a device inside of me, well, it's like, well, what happens when you implant something in your body that's made out of plastic or whatever it's made out of, you know, so you go when you find out about foreign body responses, and I mean, the only surgeries I've ever had were C sections. So I knew that was my first C section, I developed a lot of scar tissue and you're like, Okay, well, is this something that I want to take on? Considering that but I knew with my second C section, somehow the surgeon did it differently? Or my body responded differently? Because I developed no scar tissue. Okay.
Scott Benner 41:31
Responses each time different surgeons show. Yeah.
Jana 41:35
So there's, there's a lot to consider when you think, Hey, I might want to be one of these people that's willing to go out there and do this. But if, if there aren't enough people willing to go out there and do this, you guys, we're not going to ever find this practical or functional cure. Because there's 14 People implanted with the product that I have in me right now in the US for biocide. sernova Corp has a different product going on. And they have people implanted. And biocides other product has people implanted with the direct ones and they have to take immunosuppressant drugs with Synovus cell pouch, they have to take immunosuppressant drugs, that was not a route that I was willing to go down. But both of those also required you to be a diabetic that couldn't tell when you were hypo, you know, you had to be higher risk. So if those people are willing to go out there and do that, we may find a cure for them quicker than you do for the ones that aren't willing to take immunosuppressive
Scott Benner 42:44
drugs. Let me tell you something that I'm talking to everybody listening just not you. But it is incredibly difficult to find people to participate in anything, really. So you're really listening to this podcast, and you're paying attention online, everything you'll see me or hear me say, I need you to go to T one D exchange.org. Forward slash juicebox on like, if you're a US citizen or caregiver of a US citizen, that's type one diabetes, and I'm like, you go to the thing and you click on it and complete the survey, like I'm talking you through it like, you're like I'm trying to get a like a five year old to put their dishes in the sink the right way, right? Because it is so hard just to do research and to end exchanges. An example isn't doing research where you even have to go to a doctor, it's just a survey, like it's questions, they're not even difficult questions. And it is in damn near impossible to get people to do it. And the and the information that comes from the survey is really helpful for people with type one, it literally doesn't take any time. It's so difficult that they came to me to try to reach people. And right I was an out of the box idea for them. Like when when the first time they came to me they're like, look, we've never done anything like this before. And this isn't how we usually try to reach people, but it's that difficult to reach people. And you know, you have the
Jana 44:07
target audience, like, if you're going to care for your diabetes this much, then you're gonna you're going to go fill out a 10 question survey or whatnot, you know, but yeah, it's people that have found the juice box that are the target audience for clinical trial type stuff. It's this invasive. And
Scott Benner 44:29
yeah, no, I'm glad you're here it really because even when you find the people, it's not like if I get a if not like if I get 100 people to go to that link as this as an example. It's not like 100 people even answer the questions. You still don't get all of them don't. And there's nothing in there. Like it's not even like you're not getting a surgery. You know what I mean? Like it's, and so I'm just making this the point of is, it's really difficult to scale this thing. Like there are people out there that want to do it, but you have to read 100 of them to get 25 of them to do it, or you ever reach 1000 to get 250 people to do it. And listen, there's I mean, I I'm going to tell you that I don't think that anything in the zeitgeist reaches people with type one diabetes, like this podcast does. And but still, like, think about it like, you know, T Wendy exchanged with me like we can sign up for like 6000 People like we can, you know, do that right now. I'm having trouble getting them to 6000. And that's, that, that that's crazy to me. But also it's not it would mean that, you know, I'd have to reach hundreds and hundreds of 1000s of people just to get back to this 6000 people, it's that hard. So if you're a person who's interested in doing stuff like this, like don't stop yourself, because you're a very small percentage of people. And, and they do need this the they need the people or like Jenna said, this stuff's not going anywhere. Without the testing, I'll tell you, as I'm saying this, I'm in an email conversation that's about to become an agreement, I think I'm going to be doing ads for T one D for trial net. Good. But that shouldn't be difficult. You don't even know. But there it is that they have trouble reaching people as well.
Jana 46:17
So even like last night, I listened to your to lism AB interview, and decided to share it on Facebook and stuck a trial net link on there too. And I was like, Look, if anyone in your family has type one diabetes, you'll need to listen to this podcast because it just talks about so much that's not talked about often. And then you also need to need to register for trial net. And Scott, even with the small amount of friends that I have on Facebook, it has been liked what but if I throw up a new profile picture, it gets 100 likes in a few hours. Yeah,
Scott Benner 46:57
social media doesn't work the way people think it does. That's for sure. Yeah, if I mean, Jenna, listen, if you're if you'd show your scars, and be like, Look what I did. Oh my god, everybody like oh my god, Jana is such a superhero. Hmm. Like, like, like, like, like, you don't mean like, it's interesting, what like, gets people to go and so like, think of that, like it, um, it just, it's not as easy as you think. And so even when you see, like, you know, Instagram papered like, you know, with all those influencers, get these deals with people, like, you know, if you sign somebody up, you get money. That's how it works for me for two of the exchange, every time somebody finishes the survey, I get an amount of money that even those influencers don't touch it, like they don't get anybody. It's just, it's, it's hard to find the people. And well, you know,
Jana 47:46
and what, okay, so now that I have been implanted with stem cells, they can I don't qualify for another similar type of study. Like, you've been implanted with precursor pancreatic cells. You can't go try the other companies. precursor pancreatic,
Scott Benner 48:03
you're out. You're out of the you're out of the game now. Yeah. Yeah. By sites. Gotcha now, yeah, yeah. 14 people across the country.
Jana 48:15
How many the incat product, how many they wanted? So So I do think that they are doing this in stages. And I think that they're trying to find, you know, how we've talked about, I've got dose finding units inside me. I think that they are doing it in stages, because this is approved as a phase one, two clinical trial that studies. Oh, goodness, it studies, the efficacy, the safety and the engraftment of these devices. So I think they're probably enrolling people. And I think, though, they're still recruiting, so I think another set of people will have surgery. And this is just my own. My own. I don't know, this is how I would run it. I put a different amount of sales in the next set of people, you know, like, if that's what I need to study is how many sales going up, then, then I have to do different amounts. We were all promised that we would get sales inside of us. None of us know how many sales we have.
Scott Benner 49:20
Oh, I see. You could have four and somebody else could have 4 million. Yeah, okay. Well, that makes sense. I, it's those double blind studies. I mean, think about that. People who go into studies. And there's a placebo. Yeah, there's a placebo like you have cancer. Some of you are gonna get super medicine, we think it's gonna work and some of you're gonna get a sugar pill and you're like, Okay, you know, like, that's a, that's a tough run. So you don't know how many will you ever know?
Jana 49:48
I don't think I will ever know how many cells are inside me. I don't think that I would know what that really means. You know, like, I would, I would have to wait till it's over for them to publish results and And the results aren't gonna say hey, it took this many sales for it to work because that would be proprietary information. You know?
Scott Benner 50:08
It's such a, it's such a lovely and sad thing at the same time, you know, like the idea that you might not even get the full the full juice and somebody else will. But doesn't matter they're taking it all from year to year anyway.
Jana 50:25
That really gets you
Scott Benner 50:27
kidding. Terrible, terrible thing to do would be like, tall and handsome. And then they're like a year from now you're gonna go back to where you are, like, maybe I don't even want to do it, you know?
Jana 50:41
So, yeah, I guess I got over that hurdle really quickly, because I did think that it would point but now I hear you say it and I'm like, huh, yeah, they don't bother me.
Scott Benner 50:50
I'm just I'm, I love to complain. So I would just, I would call them every day. Like, you know, you guys like to consider just letting the heat
Jana 51:00
I will say that. Even participating in a clinical trial, you have to be flexible while you're going through it because they give you these guidelines and when you're going to do stuff and when stuffs gonna happen it did then it's like you're actually playing basketball once you're on the court. You don't know where the ball will
Scott Benner 51:23
ever came, Shawn you David tell you hey, it's gonna be Thursday. And all the sudden they're like, No, it's not Thursday anymore.
Jana 51:29
Yeah, they change times. They I mean, and then like, stupid stuff happened. Like, you know, the Texas snowstorm last January, February. Yeah, it like it booked back surgeries that week. So it bumps back everybody surgery, you know what I mean? The goods, they have one doctor that does the surgeries here. So there are four trial sites, not trial sites. But there are four offices across the country that are implanting people for this biocide trial. And so there's one in Atlanta, Georgia, and a couple in California, and then this one in Austin, Texas. And so if I had not lived in Austin, and this had not been my endocrinologist office, there's no way that I would travel to participate in this trial, because it's so invasive. And because there's so many visits, but like, with my mom and her primary progressive aphasia, there were clinical trials going on at various parts of the country. And we only did local ones here at the University of Texas, but I would have flown to Chicago. Now taking a person with dementia on a plane to Chicago is a bigger deal. But yeah, I and also, I mean, I guess, Scott, my sister in law works at NIH on brain cancer research, like clinical trials are just something that our family talks about on a regular basis. And,
Scott Benner 53:02
um, you understand the process and how right sorry, it is, and that it might not be as fruitful as you'd hope and things like that. But it's still important. Right? Yeah. Well, that's very kind of you. I appreciate you doing it. Thank you very much.
Jana 53:17
Well, you're very welcome. I don't feel like it's something kind of me, some of my friends are kind of like, just make sure you come off as sounding good. And like, you're not doing it selfishly. And unless
Scott Benner 53:29
there's this on the podcast.
Jana 53:34
They're like, you know, you really want this to work. And I'm like, Yeah, I want it to work. I mean, heck, it'll save my life. It may in the future, save. I mean, but both of my children have been through trial trial net, and don't have the antibodies, but you know, and like, it may say, the grandkids live, who knows? I do, it's gonna
Scott Benner 53:56
it at least make people's lives better. If it works. You know what I mean? Like in there, they're willing to, I mean, imagine like, every two years, you have a small surgery, like, you know, the surgeries, you explained, you were having a ton of stuff implant, but if you're just having one thing done, and then I don't know, you started noticing your blood sugar slipping two years later, and you went back in and they slipped another one in there. Like, I mean, I'd take that, that sounds pretty good to me. You know, it's not a cure, but it's a mean, if you don't have to manage insulin. You know, it's got to be the next best thing I would imagine.
Jana 54:30
Yeah, even even the amount of stuff inside me. I think if it was quick to start working and worked for a couple of years, I still think I would do it. And I think that I would do it again in two years. I don't know. If it took six months to ramp up how I would feel about it having to be replaced at two years and return all the time.
Scott Benner 55:04
Yeah, I wonder what they would do in that scenario? If there was a ramp up period, do that? Do you put one in it takes six months to work. And 18 months later, you put in the next one. And then six months later, you take out the first one, like, do you like overlap them? Or I'm assuming that's the kind of stuff they want to learn by doing these trials, too.
Jana 55:25
Yeah, and I mean, currently, their their game is saying that it would take, you know, eight or nine dose finding units inside of person. So eight or nine of these larger things inside of a person?
Scott Benner 55:39
Hmm, eight or nine of them? Yeah, this is still a ways off.
Jana 55:48
It's a ways off, but. And so you want to
Scott Benner 55:52
hear about what do I want to hear about God? And,
Jana 55:56
like, right now, can I fill the devices inside of me?
Scott Benner 55:59
Oh, my God, I was gonna ask you that I just been waiting. Okay.
Jana 56:03
So if you were to grab my love handles, you could feel three of them. And they, they're there, they feel like credit cards underneath the skin. And there's one side of me when you look in the mirror that you can kind of see I'm sticking out the other side, you can't and so that's kind of weird. Um, but it's only the ones that are implanted towards the back, the ones that are implanted towards the belly button, you can't tell it all and I have to press really hard to feel this. So um, you know, it's, it's odd, like, it's, it's way more odd than like wearing an omni pod. But it's also way less asked about than wearing an omni pod because nobody can see y'all.
Scott Benner 56:50
Does your husband feel them? That was 30 questions.
Jana 56:54
Yeah. So there are a lot of times that like, I'll be standing at the kitchen counter, and he'll walk by and like, grab me around the waist and I'll scream like, oh, sorry, I forget. Because he would press them in the wrong way. And it just kind of hurts or grabs a little. This has gotten better over the last few months. But at first it was actually sure. Yeah,
Scott Benner 57:14
yeah. It is actually improving as time goes on.
Jana 57:18
And the feel of them yet. Okay. Yeah.
Scott Benner 57:21
Okay. Um, wow, I would imagine. I would imagine that this is one of those things that people are going to listen to and think, Oh, my God, it's coming. It's coming. But I have to caution you like, just because this is happening doesn't mean something like this is a year away or two, this could still, you know,
Jana 57:41
this is still this is still those 10 years away, Scott, like, I know, when we did an info session with a group of people about this, one of the other people participating in the info session. And she asked, well, you know, when they come to market, will I get a discount for them? And I just kind of rolled my eyes because I was like, yeah, when they come to market 10 or 15 years from now, like, you know, this is not a fast process, you guys. But, like, the more participation out there, and the more it's known about the faster the process kind of gets, you know, I think personally, that it's going to take a long time, it's going to be hard to get people on board to try them out. But you're going to want those people's opinions that have that participated in the clinical trials when you go to actually market the stuff. You know.
Scott Benner 58:50
I get your point, though, I think you should have taken a piece of paper. I'm like, yeah, let me just make a coupon right now. Here you go. That's how you use that when it comes to market. Like you're, you're doing something for the future. It may not be for you. Right, yeah, you really do have to think about it that way. And it takes a special person to to have that thought and still want to follow through with it. You might not see yourself that way. But I mean, it's a big deal that you did this. And those other people as well. So I I loved it the beginning when you're like I can't tell you any proprietary stuff. I was like, you know, proprietary stuff, like Yeah, I'm just like, how would you know any of that? No.
Jana 59:34
I just I'm a lawyer, we like to throw around big words.
Scott Benner 59:38
So I'm gonna ask you now it's been in since the spring, are you using the same more or less insulin than before you had the procedure?
Jana 59:50
I have always fluctuated in the amounts of insulin that I use, and I still have fluctuations. There are some days that I'm like, Huh? I feel like I constantly need to have a pop tart in my hand.
Scott Benner 1:00:11
So sometimes said there's some days you feel like you're feeding your insulin. Yeah, gotcha. Well, that is that hope. Do you think that's anecdotal? I don't know. Yeah. Just hopeful. If you ever have like a hopeful feeling.
Jana 1:00:25
I mean, you can't do this and not have a hopeful feeling. You know,
Scott Benner 1:00:28
but has it happened to you one day where you woke up? And you're like, Oh, my God, I was low all night. This? Is it? Like, do you ever find yourself feeling that way? Oh, yeah.
Jana 1:00:34
I mean, especially, you know, there. And we have to turn in our total daily dose daily. And so it's on my iPhone, and it's, you know, a little chart and you can scroll back through and you can look at the mountains and the valleys of the total daily dose, and you're like, whew, it started going down a lot right here. And it's been going down for a number of days. And you're like, huh, like, Could this really like, get us there? And then you're like, I don't know.
Scott Benner 1:01:03
It goes back again. Like, maybe I just was like, my hormones or something changed for a week or something like that. i Is there anything? I'm not asking you that I should be asking you because I'm out of my depth here on this.
This may be the longest pause ever in the podcast?
Jana 1:01:25
Well, it's the longest pause today's podcast? No, um, I mean,
Scott, I, I don't think there's a ton of information that I can throw out there and be like, This is gonna convince people to do this or not convince people to do this. I will say this. If you have questions, and you want to participate, follow me on Facebook. Are you in the private message me? I am in your private group? Yeah,
Scott Benner 1:01:55
good. Well, when we put this episode up, I'll tag you in it. So that people, Okay, questions, if they'd like Juicebox Podcast, type one diabetes on Facebook, like that just went right into my little advice there. Yeah, that would be really cool. Actually, this will go up sooner than later, because it's timely. So I want to put it up. In that regard, I just, I really appreciate you coming on and talking about it. And being a proponent for, you know, trying to help I happen. You know, like I said earlier, because of some of the interactions I have with different entities, I'm aware of how difficult it is to get people to do these things. Right. And not even something to this degree, like, it's hard to get anybody to do anything. And, and there's answers and possibilities that exist out there that believe it or not, with your data will, will get us to things more quickly. And, you know, so if you can participate in anything like this, or you know, all the way down to, you know, anything from having something surgically implanted all the way down to T one D Exchange, or, you know, getting your information to trial that mate, which by the way helps you as well, you know, that it's it's got a bigger, more global value than you might anticipate. So that's
Jana 1:03:16
the things that you don't really think about are all those research offices that aren't on clinical trials.gov. You know, you've got the local race, endocrinologist research office that's constantly testing a new meter or a new product or whatnot. And, you know, I've been on the Omnipod for over 12 years, and I became allergic to the adhesive that they use on the Omni pod last summer, and joined all these Facebook groups that are like, allergic to the no one seems to be allergic to the Omni pod one, but people are allergic to the Dexcom one and two, the different ones. And Dexcom went out and had people test different adhesives for them. I'm like, Can Can only pot do that, please. Because right now I need stock in Johnson and Johnson hydrocele bandages to go under it as a barrier.
Scott Benner 1:04:06
For all that, have you ever tried just not cleaning it with alcohol too?
Jana 1:04:09
Oh, yeah. I've tried pretty much everything.
Scott Benner 1:04:14
I was gonna just say that. Pretty recently, a listener of the podcast sent me a picture and they were wearing like six Dexcom Dexcom G sevens up and down their arms. And they're like, look, I'm in an adhesive trial for Dexcom adhesive. And I was like, Oh, cool. Like, that's it. Why are you telling me? And she goes, she goes, I got the opportunity through the T one D exchange because I signed up because I filled out the survey. And then they reached out. They're like, do you want to do this too? And she's like, I could have just said no, but instead she's doing it. And another person sent me a picture at an airport. And I was like, What's this? And she's like, I'm going to participate in research. And I was like, again, I'm like, why are you telling me? And she said, I got this opportunity through T one day exchange and I was like, oh, cool, and I just heard from somebody the other day is like sitting on a mountain of like Amazon giftcards, because of T one exchange, so you can just fill out the survey, and be done with it. Or if there's other stuff and you're interested, that's how you find out about stuff like that. So that's, um, I don't know, by the way, you just got to keep going because people don't understand they don't realize how, how helpful they could be and how sometimes it's not a lot of effort to, to give a lot back so
Jana 1:05:27
well, and a lot of I mean, like clinical trials.gov Like yesterday, I went on there and typed out, you know, type one diabetes and put recruiting as the parameters. And there were 171 results of, of trials that are out there right now. And, like, the Juvenile diabetes Care Alliance claims that only 13 of those are, you know, for practical cures, and I'm like, well get people in whatever they're interested in being in right now. Would I sign up for an omni pod adhesive? Trial? Yes, it was your bed.
Scott Benner 1:06:01
Right? Yeah, it's something and then it's, it's even that much more focused for you. i Alright. Well, listen, you're very cool to do this. I appreciate you wanting to come on and talk about this. I'm going to I'm going to forever wonder what a person from Arkansas sounds like now like now I imagine it's just you and why is it not our Kansas? And I mean, don't you feel cheated if you're in Arkansas, they just took the word Kansas and put two letters in front of it.
Unknown Speaker 1:06:27
I'm sure you do. Like you know,
Scott Benner 1:06:29
what if you lived in Pennsylvania, would you be like what could like not come up with another one? You know what I mean? Like just one more word. That's all you had to do. Just sit there five more minutes and think of one
Jana 1:06:41
do you think it originally was? Oh, you are Kansas?
Scott Benner 1:06:45
Do you know Claire was first I have no clue. Kansas just take Arkansas and lop off the two letters in the beginning. And maybe and why would you name two places Kansas City that are so close to each other? What was wrong with people go fix it. Yeah.
Jana 1:07:10
Oh, okay. So just go flicks our blood sugar. That's all you got.
Scott Benner 1:07:14
Right now go figure out why people would make to Kansas cities and put them close to each other. I'll let you know when I get an answer.
Jana 1:07:21
It's been great to do this with you. You're a lot of fun. I appreciate you having me.
Scott Benner 1:07:26
Oh, that is nice. I am really amazing.
A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Kaipa pen at G Vogue glucagon.com Ford slash juicebox. you spell that GVOKEGL You see ag o n.com. Forward slash juicebox. Thanks also to touched by type one, find them on Facebook, Instagram, and it touched by type one.org. And don't forget t one D exchange.org. Forward slash juicebox. Go take that survey.
Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.
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