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Episode 60- SCREEN FOR T1D. And a new drug that can delay symptoms for 3 years!?
231 Plays2 months ago
We chat with Dana! She is a Research Nurse Practitioner (ARNP). Dana has provided care for many children and adults participating in type 1 diabetes research in Seattle (at the Benaroya Research Institute, which does TrialNet screening and studies). We chat all things screening, why its important, how to do it, and what can be done if you or a loved one have antibodies!
TrialNet has a fun detective-themed activity for families interested in learning more about T1D and risk screening. It has a detective theme with puzzles revealing the five autoantibodies associated with T1D. Follow their Instagram @trialnet to learn more!
TrialNet: https://www.trialnet.org/
Instagram: https://www.instagram.com/typeonetogether/
Tiktok: https://www.tiktok.com/@typeonetogether
Website: www.typeonetogether.com
Team Together: https://www.typeonetogether.com/teamtogether
T1D Diagnosis: Made Simple (The Course): https://typeonetogether.thinkific.com/courses/t1ddiagnosismadesimple
T1D Babysitter List: https://stan.store/typeonetogether/p/t1d-babysitter-resource
Amazon Storefront: https://amzn.to/3VaKSD0
Super Parents Community: https://honeyhealth.app.link/28gQmJjyDsG
Facebook Group: https://www.facebook.com/groups/typeonetog
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Transcript
Introduction & Dana's Work
00:00:23
amandacberg
I'm so excited. Today we have Dana with us who has type one herself. She works in research, has done a lot with type one screening and with trial-net specifically. um So Dana, welcome to the show.
00:00:35
Dana VanBuecken
Thank you. It's nice to be here. It's nice to meet you guys.
00:00:39
amandacberg
Yes, thank you so much.
00:00:39
amanda
So nice to meet you. We love trying to love working with them. Um, I've actually done the at home test kit on my, my, well now she's three.
00:00:50
amanda
God, she's three today, you guys. But when she was two, um, and luckily, you know, fingers crossed it stays this way, but no antibodies to, to start, but yeah.
00:00:51
Dana VanBuecken
and we yeah
00:00:51
amandacberg
happy breathing
00:01:02
Dana VanBuecken
i How did that go?
00:01:03
amanda
Yeah. She crushed.
00:01:05
Dana VanBuecken
How did the at home test kit go?
00:01:07
amanda
It was great. You know, I ended up doing a video of like tips and tricks on if you're going to be doing it at home on a young child. I will say like, I'll put it out there obviously that I am a nurse.
00:01:15
amandacberg
Happy birthday.
00:01:17
amanda
So I have background and blood draws on young children. And so that helps, but I just sat her up on the counter to allow gravity to kind of help.
00:01:29
amanda
And, um, you know, yeah, everything was easy peasy for the most part.
00:01:35
Dana VanBuecken
No, that's great. That was my, i I have five kids. So I, the older four, we went to a clinical site and I had them screened there. The um youngest one, I did the same thing. I did at a test kit at home and we turned on the movie. So I don't even think she knew that she was being screened.
00:01:56
Dana VanBuecken
um
00:01:56
amandacberg
That's the best.
00:01:57
Dana VanBuecken
Yeah, and not my youngest, sorry, I have a new youngest, my fourth born.
00:02:01
amandacberg
You're new, youngest.
00:02:02
Dana VanBuecken
Yeah, so that's my new favorite way to do screening is at home with a movie on maybe like a juice box or something so they're distracted and she didn't didn't realize it was happening.
00:02:07
amandacberg
Yeah.
00:02:10
amandacberg
Yeah.
00:02:12
Dana VanBuecken
so
00:02:13
amandacberg
That's amazing. That couldn't be me when I was little. I was terrified. And of course, I was the one who had to cut all the needles. But OK, yeah.
00:02:18
Dana VanBuecken
Oh.
00:02:20
amandacberg
So speaking of both of us living with type one, tell us a little bit more about yourself and how you got into what
Dana's Diagnosis Journey
00:02:25
amandacberg
you're doing now.
00:02:26
Dana VanBuecken
Sure, so I am also living with type 1 diabetes. um I have had it for 17 going on 18 years now, and I found out at 22.
00:02:37
Dana VanBuecken
So now you all know that I'm almost 40 years old. i You can do that that easy math.
00:02:39
amanda
yeah ah
00:02:41
amandacberg
you
00:02:42
Dana VanBuecken
um Yeah, 40 in February, which is another you know milestone. But yeah, I was right out of college, ah started having classic type 1 diabetes symptoms.
00:02:53
Dana VanBuecken
um just drinking water from the faucet. Every time I took a shower, I was so, so thirsty. um I was working at a physical physical therapy office as a PTA and I had to take a break to use the restroom every 30 minutes.
00:03:02
amanda
Ha ha ha!
00:03:08
Dana VanBuecken
And my boss was like, what are you know, what's going on? I thought I had a UTI. um And so I went into urgent care really for like UTI symptoms.
00:03:20
Dana VanBuecken
and found out that I had type 1 diabetes at Urgent Care. um At that point, I had lost, gosh, close to 20 pounds in a couple of months.
00:03:31
Dana VanBuecken
So of course, you know, the first thing that they thought was that I had an eating disorder
Family Support & Independence
00:03:35
Dana VanBuecken
or, you know, something else was going on.
00:03:35
amanda
man
00:03:37
Dana VanBuecken
um But my blood sugar was up. It was almost 300.
00:03:40
amanda
No.
00:03:43
Dana VanBuecken
And yeah, those those classic diabetes symptoms I was eating so much sugar. I was eating um a fun, fatty cake. I don't know if you know the fun, fatty cakes with the rainbow sprinkles and rainbow frosting.
00:03:52
amandacberg
Yeah.
00:03:54
amanda
Oh
00:03:55
Dana VanBuecken
I was eating one of those every day.
00:03:57
amanda
my god.
00:03:57
amandacberg
Wow.
00:03:57
Dana VanBuecken
ah Yeah, which was terrible.
00:03:58
amandacberg
ah
00:04:00
Dana VanBuecken
But at first I was like, this is amazing. I'm staying so fit and you know I can shit into my clothes and I can eat this cake.
00:04:05
amanda
ah
00:04:08
Dana VanBuecken
And i I was also training for a race. So I thought maybe i was you know it was the two miles of running that I was doing.
00:04:14
amanda
Yeah, yeah.
00:04:15
amandacberg
Yeah.
00:04:15
Dana VanBuecken
you know, it wasn't that. um But yeah, so that's how I was diagnosed. um Pretty classic story. I was very far from home. I had just
Type 1 Diabetes Research & Hope for a Cure
00:04:26
Dana VanBuecken
moved to Washington State. um And my family was all back in Colorado. So for my parents, it was incredibly hard. I actually recently had a ah chat with my mom about what this was all like for her.
00:04:40
Dana VanBuecken
um Because even though I was 22, I was still her baby. I was still leaving Colorado for the first time and living on my own.
00:04:46
amandacberg
Yeah.
00:04:47
Dana VanBuecken
And she said that she really just wanted to bring me home, um but she didn't feel like she could say that.
00:04:51
amanda
Mm.
00:04:54
Dana VanBuecken
And I'm so glad that she she didn't. right She's never made me feel like I can't do something because of my type 1 diabetes. Both of my parents are are fantastic about that.
00:05:04
Dana VanBuecken
um So they didn't want to clip my wings, but I've only recently learned what, what all of this was like for her, having an adult child with type one, um, who's living thousands of miles away with, you know, I had two roommates who I'd just recently met and they had to come on board and learn how to do glucagon and what a low blood sugar looks like. And, and, um, I just didn't have family support right there. So yeah.
00:05:32
Dana VanBuecken
Uh, that's a little digression, but my parents are the best. They've truly always ah empowered me and made me feel like I can keep doing life.
00:05:36
amandacberg
enough
00:05:40
Dana VanBuecken
I can live in a different state with two brand new roommates and type 1 diabetes, and it's going to be okay. Um, you know, even though in their bathroom, behind closed doors, they were freaking out, I'm sure.
00:05:51
amanda
Yeah, of course.
00:05:52
amandacberg
Yeah, that's a lot.
00:05:52
Dana VanBuecken
So yeah.
00:05:54
amanda
um And you were in you're in Washington tin state for what reason? Did you have a job or sorry? Did I miss that?
00:06:00
Dana VanBuecken
So. Yeah, that's a great question. I followed a boy. ah So that's the real answer. We're married now he's downstairs or out on a walk with our daughter.
00:06:10
amanda
Oh, perfect.
00:06:11
amandacberg
so worth it
00:06:12
Dana VanBuecken
But yeah, I followed my college boyfriend.
00:06:13
amanda
and yeah
00:06:15
Dana VanBuecken
He's a couple of years older than I am. So when I graduated, um and he was living out here, I got a job out here and wasn't ready to like live together or commit. So I was living in a house full of of young 20 something women um and dating Nick.
00:06:30
amandacberg
So
00:06:31
Dana VanBuecken
So
00:06:31
amanda
Nice. Awesome.
00:06:32
Dana VanBuecken
Yeah.
00:06:32
amandacberg
Amazing.
00:06:33
amanda
Okay.
00:06:33
amandacberg
I feel like, yeah, I was gonna say when it comes to research research stuff I'm so curious to hear about your journey there because as someone who's grown up with type one I kind of have been like
00:06:33
Dana VanBuecken
and like
00:06:35
amanda
Go.
00:06:44
amandacberg
I don't know, I just kind of avoid really reading into the research and listening to it. And I feel like I've been told year after year, curious, coming, all this stuff is coming. And I'm just like, yeah, yeah, okay. Like I'll believe it when I see it kind of thing. And I know there's a lot of great research happening because there are big things coming out, especially with technology and with screening and then, you know, different options after screening and things like that.
00:07:09
amandacberg
So I'm curious about your side of it since I don't really dive in as much as maybe I should.
00:07:15
Dana VanBuecken
sorry Sure, sure. And I think probably everyone who has a connection with type 1 diabetes has heard that we're five years out from a QR at some point, right?
00:07:23
amandacberg
right
00:07:25
Dana VanBuecken
We've all heard it. I think people usually mean well when they say it. They're, you know, trying to give us hope, but I don't think we're probably five years out from my cure, guys, but we are making tremendous progress.
00:07:34
amanda
Mm-mm.
00:07:37
Dana VanBuecken
um For me, my endocrinologist, his name was Earl Hirsch, he just recently retired, um and I just stalled when he retired because he'd been my endo for 17 years.
00:07:45
amanda
Aww.
00:07:49
Dana VanBuecken
But he was very cute into diabetes research. um just abreast of the the latest clinical trial developments, what was available, what has already been looked at, what works, what doesn't.
00:08:02
Dana VanBuecken
And so since he was my first caregiver or provider, um I always kind of had an ear open to research in that world.
00:08:07
amandacberg
One more.
00:08:12
Dana VanBuecken
um And I also, I think because I was going into nursing school, it was a little bit easier for me to pay attention to that, right? Because I was learning about therapies in school that are used for cancer or, you know, other things.
00:08:26
Dana VanBuecken
And then I would recognize those names when I heard the same therapies being used for type 1 diabetes.
00:08:28
amanda
Mmm.
00:08:32
Dana VanBuecken
um I also, I feel like anyone with type 1 or with a connection to type 1 at some point in time will realize that all of the tools we have right now are available because someone participated in research, right?
00:08:51
Dana VanBuecken
um I have a T-Slim pump.
00:08:51
amandacberg
Yeah.
00:08:53
Dana VanBuecken
I love my pump. I only have it because a host of people were willing to sign up for a clinical trial with that pump to show that it was safe and effective. Um,
TrialNet & Risk Screening
00:09:03
Dana VanBuecken
same thing with insulin, right? Over a hundred years ago, Leonard Thompson, 14 year old boy and his parents signed up for a clinical trial with something called insulin because they thought that it might help him. Um, and I think about that all the time. How scary that must have been to be the first person, right? To receive something that had never been given to people before. And now we'll look at all of the insulins that we have because of him. Um, I think it's really easy to think of the doctors, right?
00:09:32
Dana VanBuecken
Frederick Banting and Charles Best and to give them accolades but also they couldn't have made any progress without their trial participants. So that's humbling for me and I think it's in front of me all the time when I put my CGM on or when I refill my pump with my Novolog insulin that works so much better than the dinosaur insulins we had 50 years ago, right?
00:09:43
amanda
Thank you very much.
00:09:54
amanda
Hehe.
00:09:55
Dana VanBuecken
Like i'm I'm so grateful for it and it also reminds me that I I just want to pay it forward, right? Like I'm so reliant on all of these things to be able to live the life that I live.
00:10:09
Dana VanBuecken
um And it's a good life. And I owe it to hundreds of trial participants um that were willing to sign up.
00:10:16
amandacberg
I love that perspective.
00:10:16
Dana VanBuecken
So I i think that's why I love research.
00:10:20
amanda
I know, yeah, I was gonna say that's a really unique and really beautiful perspective on like all of these trials, because I will say that there's, there can be an air in the community of like, another trial, another trial, seriously, like just get it together, figure it out.
00:10:20
amandacberg
Yeah.
00:10:38
Dana VanBuecken
Sure, and I feel that too sometimes.
00:10:38
amanda
And it's Sure, sure, sure. But it's like, it's, we are so ready, but it's like, not that simple.
00:10:42
Dana VanBuecken
We're ready. We're ready for the cure.
00:10:46
amanda
And it just takes so long. It takes someone who is very, very willing to subject themselves to something that's never been studied before.
00:10:49
Dana VanBuecken
Right?
00:10:55
Dana VanBuecken
Yeah.
00:10:55
amanda
And that's, yeah, what an eyeopening way to explain that.
00:10:59
amandacberg
Mmhmm.
00:10:59
amanda
Um, so what day?
00:10:59
Dana VanBuecken
Yeah. Well, it's important to zoom out too. Oh, sorry.
00:11:02
amanda
Yeah. Oh no, you're good.
00:11:03
Dana VanBuecken
um
00:11:04
amanda
Please go.
00:11:05
Dana VanBuecken
No, I was just going to say, i for thousands of years, there was nothing you could do, right?
00:11:09
Dana VanBuecken
Like, we are living in this little tiny bit of history where we have an understanding of what diabetes is, what causes it. We know what insulin is, and we have all of these tools.
00:11:09
amanda
Yeah.
00:11:20
Dana VanBuecken
But for thousands of years prior to that, people would get type 1 diabetes, and it was a death sentence. Like, it was going to kill you.
00:11:26
amanda
Mm-hmm.
00:11:29
Dana VanBuecken
um So zooming out, I want a cure too. I'm ready. anne my pump tube being pulled out last night and I woke up with a blood sugar of 250, you know, like all of the things.
00:11:37
amanda
Oh no. No, yeah.
00:11:40
Dana VanBuecken
It's a hassle. um Nobody enjoys all of the things you have to do to take care of your diabetes. But zooming out, we're, I feel so privileged that we live in this point in history and not 200 years ago.
00:11:54
amandacberg
Yes.
00:11:54
amanda
Yeah.
00:11:54
Dana VanBuecken
So we are making progress. It's just not as fast as we would like. I know, I hear you, Raquel, I hear you.
00:12:00
amanda
Hehehehehe.
00:12:01
amandacberg
Yeah. I mean, I don't really hold on to that hope, to be honest, and I'm okay with it. I feel like I'm at a really healthy place in my relationship with my diabetes and how I manage it. And I also just feel so lucky because like we were talking about before we got on, just since you and I were both diagnosed, so much has changed.
00:12:12
Dana VanBuecken
Yeah.
00:12:17
amandacberg
And so I only think it's going to get better in the next five, 10, however many years.
00:12:17
Dana VanBuecken
yeah Yeah.
00:12:21
amandacberg
And I think I'll be fine. Like I'm not expecting to have a cure in my lifetime because I don't think that really serves me. And if it does come along, then cool. But.
00:12:29
Dana VanBuecken
and
00:12:30
amandacberg
I'm not holding out hope for it necessarily. I think that's a whole other conversation. like There's so many reasons why Kira may or may not even come.
00:12:36
Dana VanBuecken
and know
00:12:36
amanda
Yeah.
00:12:36
amandacberg
um But I do think being able to participate in research, at least for the technology and other things that can help us, it's so worth it.
00:12:42
Dana VanBuecken
Right.
00:12:44
Dana VanBuecken
right
00:12:44
amandacberg
So I love that.
00:12:45
amanda
So worth it. Yeah, I'm curious. ah What does your day to day look like working for trial net? Like, yeah.
00:12:53
Dana VanBuecken
Sure. So I work with trial net, not necessarily for trial net.
00:12:57
amanda
OK, OK.
00:12:59
Dana VanBuecken
So I work up at Benaroya Research Institute in Seattle. and we collaborate with multiple groups on clinical studies. um Most of them are focused on autoimmune conditions.
00:13:11
Dana VanBuecken
So we obviously work with type 1 diabetes a lot, but we also work with participants who have MS or lupus, or um we did the Pfizer trial when it was we were deep in 2020 and COVID, right?
00:13:24
amandacberg
And then.
00:13:27
Dana VanBuecken
Because that was related to the immune system. um TrialNet's fantastic. I've worked with TrialNet for over a decade. and our We've got multiple kind of hats that we wear for TrialNet. One is that we offer screening. so People who have a relative with type 1 diabetes, and that can be a first or second degree relative, can come in to have autoantibody testing done. so um just rewinding a little bit. What we know from having screened over 240,000 relatives of people with type 1 diabetes through trial net is that if you have a relative, your risk of getting type 1 diabetes yourself is 15 times greater than that of someone walking around in the general population. um So said another way, if you encounter any person on the street, their chance of type 1 diabetes will be 1 in 300.
00:14:19
Dana VanBuecken
If you have a relative, your chance of type 1 diabetes is 1 in 20. So it is pretty significantly increased. And we can identify with a certain degree of precision which of those relatives will progress to type 1 diabetes by testing them for these autoantibodies. We test for five different autoantibodies. And they're little proteins that become present in your blood when there's an autoimmune process.
00:14:44
Dana VanBuecken
um, attacking those beta cells in your pancreas. So for some people, we've been able to identify those autoantibodies a decade before they develop symptoms of type one diabetes. So it really gives people a heads up, right? Um, to know if they've got these autoantibodies in their system. And we also with the ability to detect these autoantibodies have, uh, been able to stage type one diabetes. Have you guys heard about diabetes staging? Is that something that that's familiar?
00:15:12
amandacberg
Not much, a little bit.
00:15:12
amanda
Um, yeah, yeah, not a ton. I would love a thorough explanation, please.
00:15:17
Dana VanBuecken
Yeah, I can give you a and nut a nutshell explanation. um So we we test for those five autoantibodies. Stage one diabetes is when we see at least two of those autoantibodies present in the blood. It can be any two of the five, but we don't see any changes in blood glucose yet. So someone's fasting blood glucose will be fine. Their A1C will be fine. They're not going to have any symptoms of diabetes.
00:15:42
Dana VanBuecken
But because those antibodies are present, we consider that to be stage one diabetes. Almost 100% of those people will eventually progress to symptomatic type one, um even though we are not seeing any changes yet. In stage two of type one diabetes, we do start to see some changes in glycemia.
00:16:02
Dana VanBuecken
Um, so maybe that, you know, A1Z is creeping up a little bit or the fasting blood glucose is creeping up a little bit. Um, if we do a glucose tolerance test, their blood glucose is going to shoot up and not come back down to normal the way that it should.
00:16:16
Dana VanBuecken
Um, so that's called stage two. Those people don't have a clinical type one diabetes yet. Uh, not usually going to have any symptoms. They probably don't even know that they have abnormal glycinia.
00:16:16
amanda
Mm.
00:16:31
Dana VanBuecken
Right? And then stage three is what we think of as type 1 diabetes generally. um You have those classic symptoms, the polyuria, polydipsia, weight loss, um you know, blurred vision, headaches, all of the symptoms that you guys are very aware aware of. um And then you do also see those changes in A1C, changes in fasting blood glucose that fit ADA criteria for for type 1 diabetes. So,
00:16:57
Dana VanBuecken
That was my nutshell explanation. The hope is that we can catch people in tight or stage one of type 1 diabetes and try and help them not to progress as quickly to stage 3, where they've lost a significant enough amount of beta cells that their body is not able to regulate their blood sugar the way it should.
00:17:17
Dana VanBuecken
Does that make sense?
00:17:17
amandacberg
OK.
00:17:18
amanda
It makes total sense. I'm curious for the listeners. I'm sure they're thinking, okay, let's say another one of my children is in stage one.
Therapies & Innovations in Diabetes Treatment
00:17:32
amanda
What is available to prevent it, not prevent, because I know that we can't prevent once once it's like, you know, started, right?
00:17:32
Dana VanBuecken
Sure.
00:17:42
amanda
but To delay it so much that like they really don't have to worry about it for many, many, many, many years is, are there trials that are proving, you know.
00:17:52
Dana VanBuecken
Yes. So there we have one therapy that has been approved to treat people who are in early stage diabetes. It's actually approved for people who are in stage two. um So they're a little bit closer to that clinical diagnosis than the people in stage one. That therapy is called to plizomab.
00:18:11
Dana VanBuecken
It's been approved for, let's see, it was November of 2022 when the FDA first said, okay, this is something that is effective and we can use this for type 1 diabetes.
00:18:17
amanda
Good.
00:18:23
Dana VanBuecken
um So we've had that available for a couple of years. When we gave that immunotherapy to people with stage 2 diabetes, um we only gave one 14-day course.
00:18:35
Dana VanBuecken
So we brought these people in. we brought them to the clinical site every day for 14 days. They received an infusion of Toplizumab and then we followed them for a few words years afterwards. And what we saw is that the people who received the active Toplizumab had did ah a delay um in symptoms of diabetes or a delay to progression of that stage three type one diabetes by about three years.
00:18:59
amanda
Mm.
00:18:59
Dana VanBuecken
So it did kick the can down the road. It was effective. in turning off that attack of the beta cells so that they would be able to last longer. They did eventually develop symptoms, right? So that's the only thing that we have that's FDA approved right now. um With that said, there are dozens of other immunotherapies that we're looking at.
00:19:23
Dana VanBuecken
um We've had at least eight that have shown to be effective in clinical trials but aren't approved um because the level of efficacy just doesn't warrant that approval yet.
00:19:34
amanda
Mm hmm.
00:19:35
Dana VanBuecken
But we always, always, either through trial net or through other programs, have um studies that are enrolling participants trying to see if we can find other immunotherapies that might but better preserve those beta cells.
00:19:47
Dana VanBuecken
So, yeah.
00:19:48
amanda
Yeah, so that was my other question is it sounds like this is the teasy old, right? I'm not going to even try, okay, that you're talking about to put to plismat.
00:19:54
Dana VanBuecken
This is teasy old. Yeah. Toplizovab is teasy old. same Same thing.
00:19:57
amandacberg
Mm.
00:19:57
Dana VanBuecken
Yeah.
00:20:00
amanda
So that delays the onset by i I don't know like it slows down the immune systems attack is that what it does is there a different study that preserves and strengthens or potentially restores those beta cells, so it's like doing the opposite thing or working on the, you know, yourself.
00:20:09
Dana VanBuecken
Yeah.
00:20:20
Dana VanBuecken
Sure. So we are doing so much, not not specifically at BRI, but the research community in general is doing so much um to kind of work on that side of the equation.
00:20:31
Dana VanBuecken
So I think Toplismab addresses one part of the problem, right? We need to figure out how to turn the immune system off toward those beta cells so that they won't be destroyed.
00:20:39
amanda
Mmhmm. Yep.
00:20:41
Dana VanBuecken
We also need to figure out how to replace the beta cells that have already been destroyed. um So I don't have you guys heard of the Vertex trial?
00:20:50
amanda
Yes.
00:20:50
Dana VanBuecken
This is one that I'm really excited about.
00:20:51
amandacberg
you
00:20:52
Dana VanBuecken
So um there's a doctor, his name's Doug Melton. He's got two kiddos with type 1 diabetes. I mean, they're adults now, but two adult children living with type 1 diabetes.
00:21:02
Dana VanBuecken
And he has devoted his whole career to trying to find a way to cure their type 1 diabetes. And he's done that through stem cell research. So what he is working on is taking stem cells and stimulating them to become beta cells.
00:21:20
Dana VanBuecken
They're not exactly like the beta cells that we have in our body, but they function in the same way.
00:21:25
amanda
Mm.
00:21:25
Dana VanBuecken
um And that when the blood glucose rises, they secrete insulin. Those beta cells are usually infused through your port of portal vein that runs up into your liver and they're happy in your your liver.
00:21:37
Dana VanBuecken
They can live there. get all of the oxygen and nutrients that they need and excrete their waste. i So that trial has been underway for a few years now and it has been pretty effective. you should I encourage you to look up the results of the study um because the people who have received these infusions of beta cells, many of them are able to come off of insulin and have A1Cs that are within normal range. um The problem is that these beta cells are foreign to the body
00:22:10
Dana VanBuecken
And you still have that autoimmune process going on, right? um In addition to the fact that these are foreign cells. So all of these people in the Vertex trial do need to be on immunosuppression for the rest of their lives if those beta cells are going to continue to work.
00:22:22
amanda
Mm-hmm.
00:22:26
Dana VanBuecken
So we have a two-pronged problem.
00:22:27
amandacberg
Okay.
00:22:28
Dana VanBuecken
We need to find a targeted immunotherapy, right?
00:22:30
amanda
but Yeah.
00:22:32
Dana VanBuecken
That's not going to be a big gun immunotherapy um and cause systemic immunosuppression for the rest of your life and put you at risk of illnesses, right?
00:22:35
amanda
him
00:22:42
Dana VanBuecken
And then we also need to find beta cells um that are sustainable, that, you know, can be available to the millions of people that live with type 1 diabetes um and can be easily produced in the lab. So he is making tremendous ah progress in that research. They're right now trying to make the beta cells invisible to the immune system by modifying the proteins on the surface of the beta cells.
00:23:08
amanda
Ooh.
00:23:11
amanda
Yeah.
00:23:12
Dana VanBuecken
So it's really, really cool stuff. um There are other groups working on you know encapsulated beta cells. Can we take the beta cells and put them in a device that will protect them from the immune system?
00:23:25
Dana VanBuecken
um But, I mean, I'm probably not supposed to say I'm the most excited about the Virtex study, but I feel like since I'm not working on it, I'm not employed at all by Virtex, I can say that, as someone who is living with type 1 diabetes.
00:23:29
amanda
Yeah.
00:23:31
amandacberg
but
00:23:37
amanda
yeah
00:23:40
amanda
Yeah.
00:23:40
Dana VanBuecken
yeah
00:23:41
amanda
I think that's what the community is most excited for. Cause I don't know that everyone knows all of those in a degree details, but the story that is going around is that a few people are insulin independent after having stem cell transplants, which is just crazy.
00:23:56
amandacberg
Well.
00:23:56
Dana VanBuecken
which is, can you imagine, right?
00:23:57
amandacberg
Maybe, no.
00:23:59
Dana VanBuecken
It's amazing.
00:24:00
amanda
Yeah.
00:24:01
Dana VanBuecken
And I mean, we see that with pancreas transplants too, right? We've been able to do pancreas transplants since the sixties. Um, but again, you need those big gun immunosuppressants for it to continue to work.
00:24:14
Dana VanBuecken
Usually those only work for 10, maybe 20 years, if you're lucky. um And we honestly just don't have enough pancreases to transplant into all of the people with type 1 diabetes.
00:24:27
Dana VanBuecken
There's no way. We probably do 1,500 of those transplants in the US s a year.
00:24:33
Dana VanBuecken
And that's, you know, ah it's a joke fantastic for those 1,500 people, but it's a drop in the bucket um when it comes to treating everyone with type 1.
00:24:33
amandacberg
Okay.
00:24:39
amanda
Yeah.
00:24:40
amandacberg
yeah
00:24:43
Dana VanBuecken
So,
Personal Testing & Early Detection
00:24:44
Dana VanBuecken
yeah.
00:24:44
amandacberg
So as someone living with it yourself, have you screened your own kids? How do you feel about all of that?
00:24:49
Dana VanBuecken
one So I, my husband and I were actually just having a conversation um last night about the fact that he is a very offensive problem solver and that he likes to think about all of the potential things that can go wrong and likes to make plans for them just in case they go wrong.
00:25:09
amanda
Yeah.
00:25:09
Dana VanBuecken
And I'm usually more of a defensive problem solver and that I am very comfortable playing whack-a-mole like when a problem comes up, like then it's going to get my attention.
00:25:09
amanda
Yep.
00:25:10
amandacberg
And.
00:25:18
Dana VanBuecken
And I feel like I'm that way in every realm, except for with my health. And I think it's obviously like having a little bit of PTSD from this diagnosis that I wasn't expecting.
00:25:30
Dana VanBuecken
Um, so I definitely fall into the defensive problem solver camp when it comes to screening my kids and or offensive problem solver camp. Sorry, not defensive.
00:25:40
amanda
Yeah, I know what you mean. Yeah.
00:25:43
Dana VanBuecken
Um, for me, it's helpful to know. ah whether or not my kids have antibodies, what their risk is. um Again, if you have a relative with type 1 diabetes, and all of my children all obviously do, your risk of diabetes is 1 in 20, or about 5%. I've got 5 kids, so the math is not really this simple, but my risk of having a child with type 1 diabetes is more like 25%, right? Because there are 5 of them.
00:26:13
Dana VanBuecken
um So for me, before I screened them, anytime one of them would go to the bathroom more than once in an hour, anytime they seemed like they were really thirsty anytime or really hungry, um anytime they weren't gaining weight as much as I thought they should be at their yearly checkup, I would think, oh my goodness, it's type 1 diabetes. And I would be chasing them around with my glucometer trying to test their blood sugar so that I could just reassure myself
00:26:44
Dana VanBuecken
Um, and they don't appreciate that.
00:26:45
amanda
Mm-hmm.
00:26:46
Dana VanBuecken
At least my children don't appreciate being chased around and trying to, you know, get a heel stick so I can do a blood sugar.
00:26:47
amanda
definite
00:26:48
amandacberg
But...
00:26:53
Dana VanBuecken
Um, so for me, it was helpful to bring them in to have them all screened so far. They're all negative. Um, I haven't been able to screen my seven month old yet because you have to be at least two years old.
00:27:07
Dana VanBuecken
Um, and my daughter was, she was. really young when we screened her so it's something I probably need to continue to do. TrialNet as of late has started offering re-screening every two years to kids that initially screen negative for autoantibodies so it is something that you can come back and recheck. And for me again I want all of the information so that's something that our family will be doing.
00:27:32
Dana VanBuecken
um I was telling Raquel, there are some families who are more defensive problem solvers and they don't want to know what the autoantibodies are.
00:27:40
amanda
Mm hmm.
00:27:43
Dana VanBuecken
And if the child develops, is going to develop type 1 diabetes, they want to find out when they develop symptoms. And so I respect that there are different ways of looking at this.
00:27:53
Dana VanBuecken
um For me, since I'm very much in the trial net world, I know, you know, we've done lots of research that shows that if you can save beta cells and keep them functioning even for two or three years longer, um like we did with the Toplism Ab study, there are long-term benefits. So people will be less likely to have severe hypoglycemia.
00:28:15
Dana VanBuecken
um, less likely to have neuropathy or nephropathy or some of those diabetes complications that I know a lot of us hear about and worry about.
00:28:17
amanda
Mm hmm.
00:28:23
Dana VanBuecken
Um, so for me, I want to know as soon as possible when those antibodies, if those antibodies pop up. And then now we have tools that are fingertips, uh, where we can do something about it.
00:28:35
Dana VanBuecken
My kids might be eligible for TZ-old for Toplizumab so that we can kick the can down the road. Um, I know my, at least my six year old would do much better with diabetes if we could kind of wait a few years until she's a little bit more mature and can understand it better.
00:28:49
amanda
Mm.
00:28:52
Dana VanBuecken
Even three years would be a big difference um for her.
00:28:53
amanda
Yep.
00:28:57
Dana VanBuecken
And then, yeah, there are all always clinical trials that I would like to at least have the option of participating in. I want to know um what they might be eligible for, if there's something that would be a good fit.
00:29:10
Dana VanBuecken
um Yeah, I just want to know what all of my options are and be on top of the ball.
00:29:14
amandacberg
Yeah.
00:29:15
Dana VanBuecken
Again, in this one area of my life.
00:29:17
amandacberg
OK.
00:29:18
Dana VanBuecken
ah Yeah.
00:29:18
amandacberg
I have a question. and I'm curious if you know. So you say like if you have a relative, your risk goes way up. What's considered a relative? So I have, I think, a third cousin and a second cousin.
00:29:26
Dana VanBuecken
yeah
00:29:29
amandacberg
I like didn't grow up seeing it all, but I now know they both have type 1. They're both on my dad's side, which I know it's more common to go through the dad's side than the mom, but maybe you can speak to that too.
00:29:33
Dana VanBuecken
um
00:29:38
amandacberg
But like what is considered a relative? Did you have anyone else in your family? like I'm kind of curious, selfishly.
00:29:43
Dana VanBuecken
Yeah, so no, that's a great question. um For trial net purposes, we consider first and second degree relatives to fall under that umbrella of, um you know, who's going to increase your your risk.
00:29:58
Dana VanBuecken
So that can be obviously mother, father, children, siblings,
00:30:01
amanda
you
00:30:02
Dana VanBuecken
um grandparents would be second degree, aunts, uncles, cousins. Third degree does not fall under those two umbrellas.
00:30:10
amandacberg
and tomorrow
00:30:10
Dana VanBuecken
So for trial net purposes, you wouldn't qualify to screen um based on that a third cousin, I think you said.
00:30:13
amandacberg
Yes, yes.
00:30:19
Dana VanBuecken
But there are, I mean, there are also services that are offering antibody screening to people in the general population that don't have first or second degree relatives.
00:30:29
amandacberg
Okay.
00:30:29
Dana VanBuecken
um There's a company called Enable Biosciences, and they'll send a test kit to anyone. um And then if you test positive through Enable Biosciences program, TrialNet will bring you on board, do a confirmatory testing, show that yes, in fact, you really do test positive for these antibodies.
00:30:46
Dana VanBuecken
And then you have TrialNet monitoring services and clinical trial um screening available to you as well. So it's very cool.
00:30:52
amanda
I love that.
00:30:53
amandacberg
Okay.
00:30:53
amanda
That's so cool. Okay. so So I then have a question for our family dynamic in relation to, you know, being more likely to develop it.
00:30:57
Dana VanBuecken
Yeah.
00:31:04
amanda
So we don't have type one on either side of the family, like for as far back as we can go, you know, um that we're aware of at least.
00:31:05
Dana VanBuecken
No.
00:31:09
Dana VanBuecken
No.
00:31:14
amanda
And so our daughter is the first one on both sides to have developed it. Does that still put our younger daughter who was antibody negative at the standard higher risk because her sister has it? Or do you think that her sister, my daughter who has it, it was like a total fluke environmental kind of situation?
00:31:37
Dana VanBuecken
Yeah. It's a, it's a good question. Um, with type one diabetes, there is some level of genetic risk, right?
00:31:46
amanda
and
00:31:46
Dana VanBuecken
Genetic predisposition to developing type one. And just based on the fact that their siblings, your daughter is at increased risk, right? Because she's going to have, there are a host of high risk genes, um, that predispose for type one diabetes.
00:31:55
amanda
Mm hmm.
00:32:02
Dana VanBuecken
If you've got two siblings, they're both going to have that background genetic risk. um And the other thing that is kind of wild to me is that 95% of people who are diagnosed with type 1 don't have any family history.
00:32:17
Dana VanBuecken
of diabetes. It's only 5%, right, that are like, Oh, yeah, my aunt had this or my my grandpa had this. um But for most of us, it's a shock. It comes as a shock. You're the first person you're an in and of one in your family with this new chronic illness. And that was definitely that was the case when I was diagnosed. I will say my one of my cousins has been diagnosed since then at a similar age um to when I was diagnosed.
00:32:43
amandacberg
Mm.
00:32:45
Dana VanBuecken
And her diagnosis looked very different than mine because we all we had been through the ropes once, right?
00:32:51
amanda
Mm hmm.
00:32:52
Dana VanBuecken
We kind of knew what it was. We knew that there was risk in the family. A lot of my cousins, my siblings had been screened. um She had not yet been screened. So it it was still a bit of a shock to her that it was her.
00:33:05
Dana VanBuecken
um And, and she's doing him great. But for us, like there has since been one other person, but I know I'm, I'm unique in that. I'm in the 5%. So yeah.
00:33:16
amanda
So interesting.
00:33:18
amandacberg
Yeah, it's weird to think about like, not just my own kids, but also potentially my sister's kids and that kind of thing.
00:33:24
Dana VanBuecken
ran
00:33:24
amandacberg
Do you have the data around like the likelihood of it when you look it up and you hear so many things passed around in the community about like, if you're the father, you're this much likely compared to if you're the mother, like, is there some way to clear that up?
00:33:33
Dana VanBuecken
ah
00:33:37
amandacberg
I feel like I get so many different answers.
00:33:39
Dana VanBuecken
You get so many different answers. i I mean, is there data? Yes. Is it conflicting? Sometimes.
00:33:46
amandacberg
Okay.
00:33:47
Dana VanBuecken
We do know if you have a twin with type 1 diabetes, your risk is going to be much higher than if you have a sibling who's not a twin with type 1 diabetes.
00:33:57
amanda
you
00:33:57
Dana VanBuecken
um And interestingly, that goes for fraternal and identical twins. Obviously identical twins will have more risk.
00:34:02
amandacberg
when
00:34:05
Dana VanBuecken
than fraternal twins, but fraternal twins will still be at greater risk of type one if one twin also has type one diabetes. So there's something going on during pregnancy, right? Or something in the placenta that's that's causing increased risk as well.
00:34:19
Dana VanBuecken
um But yes, i the closer degree of relative you are, the higher your risk is going to be just based on the fact that you're going to share more of that genetic predisposition.
00:34:26
amandacberg
yeah facebook Okay.
00:34:32
Dana VanBuecken
Yeah.
00:34:33
amandacberg
Wow. That's so interesting and like scary, but I try not to think about it too much for my future.
00:34:35
amanda
So interesting.
00:34:38
amandacberg
And I love that. Yeah.
00:34:39
Dana VanBuecken
and Well, I love your perspective because you said even though you're not hopeful that there will be a cure, even maybe even in your lifetime, you can live a good life with type 1 diabetes, right?
00:34:47
amandacberg
Yeah. That's fine. Right.
00:34:51
Dana VanBuecken
And your kids. can like If I did not think that my children would be able to live a good life with type 1 diabetes, I wouldn't have had children, right?
00:34:57
amandacberg
Yeah.
00:34:59
Dana VanBuecken
But I feel like I love my life. um I'm able to do everything that I want to do with type 1 diabetes. you know, we had we just had Olympians.
00:35:10
Dana VanBuecken
We were watching Olympians with type one diabetes. So I hear that it's scary and I relate to that.
00:35:14
amandacberg
Yeah.
00:35:17
Dana VanBuecken
Again, I was chasing my kids around with a glucometer because I'm worried about them getting type one.
00:35:19
amandacberg
Yeah. Yeah.
00:35:22
Dana VanBuecken
That said, I talked to them about the fact that if they get it, it's going to be okay.
00:35:28
amanda
Yeah.
00:35:28
Dana VanBuecken
And this is what we're going to do. And this is the tools that we have. And you can still do everything that you want to do in life
00:35:32
amanda
Yep.
00:35:35
Dana VanBuecken
with type one. You just have to, you know, work around it sometimes and wake up with 250 and replace your pump site and keep on moving.
00:35:35
amandacberg
yeah
00:35:38
amandacberg
Exactly.
00:35:44
amandacberg
Yep.
00:35:45
Dana VanBuecken
Yeah.
00:35:46
amandacberg
Awesome. Well, is there anything else you want to share regarding the benefits of screening, how people should get screened, or anything else you think people should know about research?
00:35:55
Dana VanBuecken
Sure. So um i I will just put out there that the easiest way to learn more because I know our conversation is not comprehensive, is to go to trialnet dot.org, www.trialnet dot.org. You can find where they are doing in-person screening if you'd like to go into a clinical site and have a blood draw done to look for antibodies, or you can find out how you can request a test kit to be sent to your home so that you can do, um you know, do the tests having your kiddo sit on their countertop and dangling her feet down, right?
00:36:29
amanda
Mm hmm.
00:36:30
Dana VanBuecken
um So that is the easiest way to find out more information. um There are also people available to chat with you if you maybe are ambivalent or you need more information, um and you can find their contact info at trialnet dot.org as well.
00:36:48
Dana VanBuecken
I'm trying to think if there's anything that I'm forgetting that that's really important for people to know. um
00:36:56
amandacberg
I love this conversation.
00:36:56
Dana VanBuecken
Yeah.
00:36:57
amandacberg
like I feel like I learned a lot about the potential future opportunities, which I don't usually think about, but when I actually think about the potential of the Vertex trial going through or anything like that, it's just, it's hard to wrap my head around, but it's very exciting.
00:37:01
Dana VanBuecken
it
00:37:10
amanda
yeah
00:37:11
Dana VanBuecken
It's very exciting. And I i mean, I'm a glass half full, eternal optimist. And sometimes that is not good for me. But I, I do think there will be a cure.
00:37:23
Dana VanBuecken
I don't know if it will be in my lifetime, but we are making so much progress. and We have so many incredible brains working on this and people fundraising for research.
00:37:34
Dana VanBuecken
um It's going to happen. I just don't know when.
00:37:39
amanda
Yeah.
00:37:39
amandacberg
Yeah.
00:37:39
Dana VanBuecken
I'm not going to promise in the next five years we'll have a cure, but I see we're making so much progress with these immunotherapies. We're making so much progress with the cell replacement therapies that we're going to get there.
00:37:52
Dana VanBuecken
um And maybe if I have a great grandchild who's diagnosed, they'll be able to, you know, go into the hospital for a week and turn things around and and leave without a g glucometer or a CGM or can't you imagine?
00:38:02
amanda
Oh my gosh, the dream. That makes me emotional thinking about that.
00:38:07
Dana VanBuecken
It would be amazing. That's my notes. Right?
00:38:10
amandacberg
Yeah.
00:38:11
Dana VanBuecken
it's It's going to happen.
00:38:12
amanda
Yeah.
00:38:13
Dana VanBuecken
um And I just think, like think of Leonard Thompson's parents a hundred years ago. They would be amazed at what kids can do um with diabetes right now and how we can monitor our blood glucose and the fact that we can track our children's blood glucose from our cell phone, from the comfort of our home and know how they're doing.
00:38:22
amanda
Yeah.
00:38:33
amanda
Mmhmm.
00:38:35
Dana VanBuecken
Like if we've made that much progress in a hundred years, we're going to make that much more progress in the next hundred years. We might be not alive to see it, but I'm hopeful that we are going to get there.
00:38:48
amandacberg
I agree.
00:38:48
amanda
Absolutely.
00:38:49
amandacberg
Wow. Well, thank you so much, Dana, for joining us and sharing your story and all about research. And thank you to TrialNet for partnering with us to spread this message too. I think it's so important. I feel so much more inspired to participate in research studies like I already tried to, but I want to try harder.
00:39:04
amandacberg
um There's a lot of opportunities out there and the cool thing is you can do all of them or sign up at least for all the different companies, not just one because they're all doing different research. um So of course, we'll link all of the trial and stuff below. You also can Thriveable is one that you can join um as well as Fieldwork. They're all really great research companies and a lot of them are incentivized and it's kind of just a win-win situation for everyone. So we'll link all of that stuff below and yeah, thank you so, so much.
00:39:33
Dana VanBuecken
Yeah, thank you.
00:39:33
amanda
Yes, thank you, Dana.
00:39:34
Dana VanBuecken
It was lovely chatting with you guys.
00:39:35
amanda
It was such a great conversation.
00:39:37
amandacberg
Talk soon.
00:39:37
amanda
Thanks.
00:39:37
amandacberg
Have a great day, everyone.
00:39:39
Dana VanBuecken
ah You too.
00:39:40
amandacberg
Bye.
00:39:41
Dana VanBuecken
bye.