← Duologue with Leslie Heaney
Duologue with Leslie Heaney
Putting Diabetes Out Of Business - feat. Allison Aston, Dr. Natasha Leibel, and Lynn Starr
00:51:52
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- [00:05]
Leslie Heaney
Hello, everyone. This is Leslie, and you're listening to the interview with Leslie Heaney. November is National Diabetes Awareness Month, and I wanted to do an episode about diabetes because I have several close friends whose children have been diagnosed with type 1 diabetes within the past 15 years. When I was growing up as an old lady, as I am now, I knew of one girl at my school, in my grammar school, who had type 1 diabetes. But it seems as if today the disease is much more prevalent, and the statistics around it are pretty staggering. One in 300Americans will develop diabetes in their lifetime, and one in 15 will if they have a family history of the disease. And as I just mentioned, in my own personal experience, it seemed to me that the cases of type 1 diabetes were on the rise in America. And after doing this episode with these superstars who are on the front lines trying to eradicate the disease, I was correct in my assumption. Cases of type 1 diabetes in America are on the rise, and there's no known cause. So in this episode, I speak with three incredible women who, as I mentioned, are on the front lines working to eradicate this disease. Allison Astin, Dr. Natasha Leibel, and Lynn Starr. Allison is a parent of a child with type 1 diabetes, and through her work at Veronica Beard and as the sort of head of their VB Gives Back program, she has raised hundreds of thousands of dollars for diabetes research. Dr. Natasha Leibel is a superstar diabetes doctor and the director of the Pediatric Diabetes program at Columbia University Irving Medical Center. And last but certainly not least, is Lynn Starr, who is Breakthrough T1D's chief global advocacy officer. And both Lynn and her daughter are type 1 diabetics, having been diagnosed as adults. So in this episode, I speak with Allison and Dr. Leibel and Lynn star about what it's like to be a parent with a child who's managing the disease. We talk about current treatment options, and then we talk about the exciting new therapies that are delaying the onset of diabetes and the groundbreaking research that could lead to the eradication of this disease. We should all learn more about diabetes. We should all work to get involved in this fight. Just anecdotally, I've noticed over the past 15 years having friends go through it, they're making such incredible strides and gains towards finding a cure. It's a really exciting time to be a part of this fight, and this episode will not only inform you about diabetes, but also, I hope, inspire you to help get involved and help this group of incredible people find a cure. So nice to see you all here. Thank you so much for joining. We have Dr. Natasha Leibel, Lynn Starr from Breakthrough, and Allison Aston, who is very involved in raising awareness and funds for diabetes and has a child who has type 1 diabetes. So just so delighted to have all of you here today for this very important conversation during November, which, as I know you all know, is Diabetes Awareness Month. So I'm so excited to be sharing this information with our listeners. I thought it might be helpful, Dr. Leibel, to start off with you, if you could just sort of set the table for listeners and explain, because I think there is some confusion among laypeople about diabetes type 1, type 2, if you could talk about that and talk about any known causes.
- [03:54]
Dr. Natasha Leibel
Sure, sure. Well, thank you so much for having me. So diabetes is a condition when the body's blood sugar goes too high. So throughout evolution, right. Our bodies have been developed in such a way to keep our blood sugar in a very tight range. So 70 to 140 milligrams per deciliter is really where the blood sugar should live in very scientific terms. So diabetes is when the blood sugar goes above the normal range. And our blood sugar is controlled by this hormone called insulin, which is produced in a cell called the beta cell in our pancreas. And that beta cell is the only place in our body that makes the hormone insulin. And when it's released, it is released in response to the food, predominantly carbohydrates that we eat. And insulin's role is to allow the sugar in our bloodstream to enter our cells where it's used for energy. So type 1 diabetes occurs when the beta cell no longer is able to produce insulin. And we call type 1 diabetes an autoimmune condition, meaning that for some reason, our body has attacked those beta cells so that they no longer make insulin properly. And why this really happens is not fully understood, and I'll talk about that more in a minute. Type 2 diabetes generally occurs when we can make enough insulin in the beta cell, but the cells in our body are actually resistant to that insulin. So the cells don't open their door to let the sugar in, despite the fact that there's a lot of circulating insulin. And this is what we call insulin resistance. And it's very tightly linked to excess body weight. Now, type one in the past has been thought of as being what we call a juvenile disease, meaning it happens in children. It used to actually be called juvenile diabetes, but half of all cases diagnosed every year are actually in adults or people over the age of 18. And type 2 diabetes does occur sometimes in adolescence, but is predominantly found in adulthood. So why type 1 diabetes occurs, as I mentioned, is not really fully understood. We know that people who get type one tend to have a genetic profile that predisposes them to developing it, and then something in the environment. What that is, we don't know, triggers that attack on the beta cell. And we do know that developing type 1 diabetes is never anyone's fault. It does not come from ever eating too much sugar. That does not cause type 1 diabetes. And it is really, unfortunately, nothing that we can prevent at this point. What we can do is actually in high risk people, meaning people who have a family member that has Type 1, we can screen those family members to check for their risk of developing it, but unfortunately, at this time, we cannot prevent it.
- [07:02]
Leslie Heaney
You know, I've got. Sorry to interrupt you, Dr. Leibel, in the middle of a thought, but, you know, is there a rise in the number of cases of type 1? You mentioned that half of the individuals who are diagnosed are over the age of 18. I anecdotally, Allison, being one, have four people friends of mine and two very close friend of friends of mine whose children have type one. And I don't recall, when I was growing up, I knew of one girl who'd gone to my school who had type 1 diabetes. Is it on the rise?
- [07:34]
Dr. Natasha Leibel
It absolutely is. So there are about 37 million people in the country living with diabetes. About 5 to 10% of that number have type 1 diabetes. And it is on the rise. Again, no one is really sure why, but it absolutely is. And it's particularly rising quickly in very young children. So children under the age of six years old, we're seeing more young children being diagnosed with type one.
- [08:03]
Leslie Heaney
And for people who are listening, who have children or for themselves, because you mentioned adults are also half of the group that is being diagnosed with Type one. What kind of symptoms should people be looking for?
- [08:16]
Dr. Natasha Leibel
That's an excellent question. So the symptoms are pretty classic. It's what we call polyuria, meaning going to the bathroom too much, peeing too much, polydipsia, drinking too much and polyphagia. These are. It's being extremely hungry. And generally what we see is that people are very hungry and they're eating constantly, but they're losing weight. And the reason that they're losing weight and drinking so much is that, remember now their blood sugar is high. The sugar is being filtered through their kidneys, where the kidney can't hold on to all of it, and it pulls water with it into the urine, basically. Is making your urine. And so all the calories you're eating, all the sugar is actually just going into the urine. So you're losing weight, very thirsty, and peeing a lot. Those are the typical symptoms. If it's left undiagnosed for too long, you can actually go into a critical phase of type 1 called diabetic ketoacidosis. And that's an extremely dangerous, life threatening condition where the acid in your body builds up too high and unfortunately can have very unfortunate consequences.
- [09:24]
Leslie Heaney
I think without jumping around too much to just sort of continue the conversation there a little bit, I think that that was one of the things that your daughter Audrey had. Am I right about that? That she was very close to. Dr. Leib will repeat that. It's called ketoacidosis.
- [09:41]
Dr. Natasha Leibel
Diabetic ketoacidosis.
- [09:43]
Leslie Heaney
Yes.
- [09:43]
Dr. Natasha Leibel
And it's a life threatening condition.
- [09:44]
Leslie Heaney
And.
- [09:45]
Dr. Natasha Leibel
And I just want to mention. And you cannot live without insulin, so. Insulin is necessary to live. So diabetes is a condition, when not properly treated, either the blood sugar goes too high or too low. Those are. Those are life threatening situations.
- [10:02]
Leslie Heaney
Allison, is that. Am I wrong about that? I recall that.
- [10:06]
Allison Astin
No, no, that's exactly. That's exactly correct. Actually, Audrey was at camp exactly three years ago, July 3rd. We got a call where they thought she had a very, very severe stomach virus. And it was like, you know, until those Covid days where you're like, really? Is she your patient zero? After six days of, you know, isolation. And they're like, yeah, yeah, she's our patient zero. I'm like, okay, all right. And then very, very quickly, six, eight hours later, she collapsed and she was rushed to the er. And, you know, at this point, we're still thinking maybe it's an appendicitis, maybe it's something else, because, you know, she had been exhibiting all the signs that Dr. Leibel had been talking about. And, you know, before going to camp, we didn't pick up on any of them. Drinking too much, peeing too much, all of that, you know, those were all signs that were visible. She was skipping meals, she had headaches. You know, it was from her. So we excused so much of it. And then on this fateful day, you know, when she did collapse and it was very serious and she was unconscious, and, you know, they brought her to the yard. They were still running tests. They didn't know what was going on. And this one doctor said, you know what? Let's finger prick her. And she had been there for a good 20, 30 minutes at this point. And they did. And right away, within seconds, we knew it was type one. She was immediately helicoptered to pediatric icu, where she, you know, embarked on this journey. And as parents, we had no idea what was going on. We literally had no clue what type 1 diabetes was. I had heard about it, you know, in the back of my mind, but never, ever had that experience firsthand within our family or, you know, immediate friend group. And so, yeah, it was a fateful day. And I'm happy to say that that was our first day. And we live on to tell the tale.
- [12:23]
Leslie Heaney
Well, I mean, I seem like I'm a bad luck charm because I happened to be with you when you got the phone call from Cam. And I just remember, just. And then the days that followed, just, you know, that. And I'm sure, Lyn, we're going to get to you, too, that you had that experience with your own daughter and with yourself, just sort of that initial shock and awe. And then the learning curve that occurs. Right. For people who are diagnosed, because there's so much that goes into managing it, which kind of gets back to the importance of us finding a cure here, because it is so life altering. Dr. Leibel, for people that have it, what are the treatment options? We know that it's this lack of insulin production. What does the treatment look like today?
- [13:08]
Dr. Natasha Leibel
Sure. So the only treatment for type 1 is injecting exogenous insulin. So you have to take insulin to live, and that is the only treatment. There are no alternatives. There is no. And there was no other treatment. People ask, but this is the only one. So.
- [13:28]
Leslie Heaney
And it.
- [13:29]
Dr. Natasha Leibel
It's very burdensome, it really, to take care of your diabetes well, to be in good control, to keep your blood sugars under good control, you. You have to take insulin before every single time you eat, and you have to know what your blood sugar is throughout the day, make sure it's not going too high or too low. So there's two ways that our insulin is given. It can be given it via injection with an insulin pen or a syringe, or we have insulin pumps, and pumps are small devices that have little catheters that are inserted under the skin, and this allows for little boluses of insulin to be given every time you eat, or if you have a high blood sugar and these catheters are changed out every two to three days. So the appeal of the pump is that you don't have to give injections to yourself five, six, seven times a day every time you eat. Most people with type 1 or many people Especially in this country, are wearing also what we call continuous glucose monitors, or CGMs for short. And these are little devices, they're like the size of a quarter. They stick onto your skin and have a small, very small catheter also that goes right onto the skin and reads your blood sugar every five minutes to your phone, can read to your parents phone if you're a child and your parent wants to follow your blood sugars. And the most advanced technology Today are these CGMs speaking to the pump. So the. Via Bluetooth, the CGM will read to the pump what the blood sugar is. And that pump, based on if your blood sugar is rising or dropping, will give you more or less insulin. It still requires the user to get involved and to take a bolus if they're going to eat, et cetera. But it does allow for overall, I would say, better glucose control.
- [15:15]
Leslie Heaney
And how long has that technology been available? Because I'm there just by watching friends who've been back to, you know, doing the shots and having a, you know, there were these Labrador dogs that you, I'm sure you can still get them. You probably don't need them now with all this technology, but that could help smell when your blood sugar dropped and then let someone know because, and I know, Lynn, you've probably been through this with yourself and your child. And Allison, I know has with, with Audrey is just monitoring in the beginning. I think you're. You as a parent are monitoring constantly. Right. Because you just don't want to get it wrong and you want to make sure that you're there. But do these kind of take the place of that?
- [15:52]
Dr. Natasha Leibel
Yes. So, I mean, prior to CGMs, I mean, we had parents who were checking their child's blood sugar by finger prick every hour for 24 hours a day. I mean, I think to let a child go to sleep and not know what their blood sugar was is one of the most unnerving experiences as a parent. And most parents who have a child with diabetes have spent some sleepless years. And so CGMs, because they alarm if your blood sugar is dropping too high or too low, at least can reduce some of that. These very new devices, what we call hybrid closed loop, where the CGM reads to the pump, I would say, have been around for about five years or so.
- [16:32]
Leslie Heaney
Anyone who has children knows the newborn phase. It's kind of like we block it out just so we can get on with our lives, because it's so traumatic. But being up every two hours to feed a child or three hours that stress is nothing compared to the stress of having to check your child's blood sugar. Because if you get it wrong, Right. Or you're not monitoring it, there can be, you know, some serious consequences.
- [16:53]
Allison Astin
Yeah. I mean, there is. There is no getting it wrong. Right. I mean, Dr. Leibel is our. We're so lucky to have Dr. Leibel in our lives. And she was there on Audrey's first day, and she's been there ever since. And, you know, I mean, the first years are like. I mean, I was a deer in headlights, really. My husband and I were both deer in headlights. We didn't really understand what was happening. And I remember Dr. Leibel saying, well, we got to teach you to walk before you run. So do you remember that Dr. Leibel, I mean, Cathy, she's like, you're going to test her blood sugar every few hours before she works out, after. Before a meal, after a meal, after a workout, you know, and it was like this real understanding that we got around how different activities, how different foods affect the body, and you really start to, like, kind of understand that in a very slow way. And then when we were introduced to the glucose monitor, that was like a. Ah, you know, that was like that alleviated a lot of, you know, the math and the monitoring, because it happened very automatically. And then all of a sudden, she got this pump and it was like, I mean, Jesus had arrived. Right? I mean, it was. It was life changing. And then, you know, you start to realize that technology we are now very accustomed to three years in, you know, never. Never happened. Five years prior. Like, you know, Lynn. Lynn can talk about, you know, the early days and. And with her daughter, you know, like, we didn't. They didn't have that. And. And so I'm so grateful for the technology because it enables us to, you know, just kind of go through our day with a little bit of reprieve. It doesn't. It doesn't change the, you know, extensive nature of the disease. Right. She still has to do all her things, and we still have to monitor and keep track, but it really is a life changer in terms of being able to breathe at night, you know.
- [19:19]
Leslie Heaney
As a parent, and to give her some autonomy. Right. And, you know, independence. That's part of it, I think, when they get to be teenagers is you. Again, I just observed this sort of from the sidelines. But you want them to be able to go to that sleepover or go, you know, live their life. But so this technology allows them to do that. So, Lynn, you yourself have type 1 diabetes. You've probably lived through all of these. You probably have a Labrador sitting under your desk right now. I mean, tell me.
- [19:51]
Lynn Starr
You may not have a Labrador sitting under my desk right now for many reasons.
- [19:54]
Leslie Heaney
But I was going to say I have two at home if you need, you know what, you want one just.
- [19:57]
Lynn Starr
I have. Elaborate. She'll do.
- [20:00]
Leslie Heaney
Okay.
- [20:02]
Lynn Starr
So I have been in this role as Breakthrough T1D's chief global advocacy officer for about a year and a half. But as you say, I'm not new to type 1 diabetes, and I'm actually not new to this organization either. When I was first diagnosed 35 years ago at 27, and as Dr. Leibel said, about 50% of people who are newly diagnosed bar belts. So I was 27. My great endocrinologist, my Dr. Leibel said to me, I was a young lawyer here in Washington, D.C. my family wasn't here. I didn't know many people. He said, you have to get involved with breakthrough T1D, which was then called JDS, or Juvenile Diabetes foundation, subsequently became JDRF. And so I did, and I jumped in, and this organization really became my family and my support system. And I'm eternally grateful. I stayed very involved in this community. My whole career has been in advocacy in Washington. And so when this opportunity to actually join presented itself, I couldn't look away. And it's so incredible to be doing this work. The leading global taekwondo diabetes research and advocacy organization. Two weeks after I started, two weeks after I started, my daughter was diagnosed. We can't make it up, right? At 27, almost to the day when I was diagnosed, her doctor did a random test. And, you know, this happens a lot, Dr. Wood. Well, I'm sure you can speak to this, Jamie. My daughter called me and said, mom, I have pre type 2 diabetes and I have to see a nutritionist. There's a lot of misdiagnosis of type 1 diabetes being diagnosed as type 2 diabetes. And I said, yeah, you don't have pre type 2 diabetes. And sure enough, it was type 1 diagnosis. And so she now also is on insulin. Her experience was so different than mine. And I'd be happy, if you're interested, to talk about what it was like 35 years ago when I was diagnosed compared to what Jamie's experience is today. It's not easy. It's still incredibly challenging, and it's still incredibly dangerous. And I think as part of diabetes awareness months, it's important for people to understand that the technology has improved dramatically. It's become easier. But the challenges are still real and profound and the life threatening nature of this disease is still very real. So our mission at Breakthrough T1D is advancing life changing breakthroughs to cure, cure, prevent and better treat type 1 diabetes. So this past summer, you may have heard of our organization as jdrf, which as I said was Juvenile Diabetes Research Foundation. We changed our name. We changed our name because about 50% of newly diagnosed people are adults and juvenile diabetes isn't a thing. Actually, we used to think it was a thing that type 1 diagnosis was only in kids, but now we certainly know better and we needed a name that reflected our entire community, that brought the whole community in to the work and advocacy and research that we're funding and to feel a part and represented. And so Breakthrough also really represents the actual work that we're doing advancing life changing breakthroughs. We've had an incredible response to the name change and this was an incredibly exciting time in type one research advocacy. And I'm happy to talk to you about some of the exciting things that are happening right now. The type 1 diabetes.
- [24:03]
Leslie Heaney
Yes, and I want to hear all about that. I do want to, though. I mean, I'm really struck by what you just were explaining about your daughter being diagnosed at the same age that you were. And Dr. Leibel, you said earlier that Lynn, maybe you know this too from all the work that you're doing, obviously with Breakthrough. You know, you mentioned there might be some genetic component and then environmental factors might turn it on. Lynn and Jamie, I hope you're in some sort of a trial. I feel like just because being mother, daughter and then being the exact same age is, you know, have you identified a gene or a link or so.
- [24:40]
Dr. Natasha Leibel
One of the things about diabetes that's very important to understand is that it's, there is not one gene that causes type 1 diabetes. There are many genes that are contributing to the risk and to why people get Type one. And that's something that I think also makes it difficult in terms of, you know, curing it. But one thing we can do is screen family members for the, what we call the antibodies. The antibodies are a sign that those beta cells are under attack. So as I mentioned, type one is what we call an autoimmune condition, that the body is now attacking those beta cells and there are markers of that attack and you can measure those in people. And people who have a first degree family member with type one are at an increased risk of developing type one. So it's about one in 300 in the general public and about one in 15 if you have a first degree family member. So there is a worldwide study going on that is looking at screening first degree family members. And you might ask, why do this? Right? Why would we do this? And one is that if you know your risk, you hopefully can prevent, for example, what happened to Allison's daughter, right, where you get very sick and you end up with a life threatening diabetic ketoacid doses situation. And secondly, there are clinical trials and even one drug that is trying to slow the progression to full blown diabetes. So these are all things that are going on in sort of the scientific world that are really important for people to understand.
- [26:22]
Lynn Starr
If I can jump in here for a minute because this is actually an incredible advance. So we talk about preventing type 1 diabetes and the first FDA drug that delays onset of type 1 diabetes was approved last year. It's called Tzealt as its formal name. This drug, it's a 14 day infusion, it delays onset for about two to three years. Now that's not preventing it from ever onsetting. But in note, you can have a soft landing. You will not, you won't have diabetic ketoacidosis. Dka, you'll know when, you'll have a continuous glucose monitor, you'll know when you're going to have a need for insulin. You can participate in clinical trials. As Dr. Leibel said, that really can help advance the science around this. And you can just have peace of mind for a longer period of time. If you have a small child, two to three years. Allison, I'm sure you would say if you could have delayed the need for insulin for two to three years, you would have taken it. And this is an incredible advance and this is the kind of science that Bradford T1D is funding, that our government is funding through the special Diabetes Program, which contributes a lot of money towards type 1 diabetes research. There are really exciting things on the horizon. So early detection and screening is a thing now and it's important for people to know about that and be able to take advantage of it. It's no more than a fingerprint. I wish.
- [28:06]
Allison Astin
Yes. I mean, I mean it's interesting but like when you don't have any family history and when you. Like we didn't have any family history. So when even just now you do. No, we. Now we do. But you know, to be able to even just educate, you know, like, like the fact that the cam didn't realize her water bottle was like a 40 liter, like, I mean she was drinking a gallon of Water a day. Like, the signs were all there, and yet nurses missed it. Even the first ER, for the first two hours missed it. And so there, you know, if you don't have a family history, it's still one of those things where we need to get the message out, like, what is type 1 diabetes?
- [29:04]
Lynn Starr
Why?
- [29:05]
Allison Astin
You know, it's like everyone understands celiac and everyone understands, you know, thyroid disease, you know, and yet type 1 is one of those things where people are still eluded. We were fully in the dark. And, you know, I mean, she had gone to her doctor six weeks prior to July 3rd, and so I know that she was healthy and then she wasn't. Right. And it's very, you know, for families who don't have the history, it's very. It's confusing.
- [29:42]
Lynn Starr
We think there should be just screening as a matter of course. Right?
- [29:46]
Allison Astin
Totally.
- [29:47]
Lynn Starr
There's a lot of clinician education that has to happen here. Dr. Leibel, I don't have.
- [29:51]
Leslie Heaney
Well, I was going to ask you both Lyn and Dr. Leibel. You know, with that test you mentioned, it's just a fingerprint. A finger prick, rather. Is it something would. Audrey had. She had that. You know, they go into the pediatrician and they'll have the eye test or they'll. They'll do a finger prick for something else. I forget what it is. Would this be something that would have been picked up six weeks prior? You would have seen that she was becoming. To be resistant at that point.
- [30:14]
Dr. Natasha Leibel
So that's a very good question. And I think exactly what Allison. I also want to go back to. What Allison is saying is. So we hear this all the time because it's so true. Most people who are diagnosed with Type one have no family member who has type one. Right. That is by far the norm. Whereas type two is very different. And often Type two, everyone in the family has type two, so they're not so shocked when it shows up as a diagnosis, but in Type one, they normally don't. The issue is that antibody screening, which is really the way you have to do the diagnosis, just doing a random blood sugar is not usually going to catch it. That's not a safe way to try to screen the population for Type one. So it really is this antibody testing, and I think it will get there. It is not there yet for prime time for general pediatricians to be screening children for this. And I don't know, Lynn, if you would agree with that. I think we're on the cusp of possibly being able to do some form of population testing. It's very expensive, and the results need a lot of interpretation.
- [31:24]
Lynn Starr
Well, it's definitely not there in terms of pediatricians doing the screening. And I'm sorry if I didn't mean a blood sugar glucose level.
- [31:33]
Allison Astin
No, I know you didn't.
- [31:34]
Dr. Natasha Leibel
Right. It can be done with a fingerprint.
- [31:35]
Lynn Starr
The antibody test can be done with just fingerprint, and you collect a little bit of blood in a tube.
- [31:41]
Dr. Natasha Leibel
I knew that's what you meant.
- [31:42]
Lynn Starr
Yeah, that's what I was referring to. But there is great accuracy now on the screening and early detection, and we're definitely advocating for. For more screening. And there's a new bill in Congress now that would. It's called the screen for Type 1 Diabetes act that would put $5 million a year for five years to the CDC to create an education campaign to increase awareness about the availability of type 1 screening and early detection. It's not like what we used to think about. One day you don't have type 1 diabetes, the next day you have type 1 diabetes. There are stages of the development of the disease, and if you can catch it at an early stage that this is developing, you can take action. You can prevent dka, you can delay the onset, you can participate in clinical trials. These are all really significant and profound developments. And more will be coming. This is just the first onset delay therapy that's been approved by the fda, but there are more in the pipeline now, so this is exciting.
- [32:48]
Leslie Heaney
Tell us about the work that you mentioned. I know you talked about maybe lobbying for Congress or talking about that bill and them allocating more funding to the cdc. Tell us about the other work that Breakthrough does. Because just again, anecdotally, watching friends who've been involved with the organization, it is a family. I mean, they feel so passionately about it. They engage in fundraising. It's really. And it really provides an outlet and a venue for people to get involved, for families to get involved in. To make a difference in a way that I haven't seen other organizations engage families.
- [33:26]
Lynn Starr
For sure. When you meet someone with type 1 diabetes, whether your child has it or you live with it, as we say out in the wild, there's an immediate connection because we get it and we get it here at Breakthrough T1D and our whole community, I personally, our quote. Alison, I'm sure you feel it too. The connection is profound. And so the work we do, and it's immediate.
- [33:53]
Allison Astin
It's immediate. To your point, when you meet someone whose daughter who they themselves, it's like you have this instant connection. Absolutely, yeah.
- [34:05]
Lynn Starr
For Sure. I have so many stories I could tell. Our time is limited, so I'm not going to digress into some personal connection stories, but it really is amazing. So what we do at breakthrough T1D is we fund research and we fund advocacy. We fund the work that researchers are doing. So the more money that we can put towards type 1 diabetes research, the more research there will be. A big part of what we do is fundraising. We have 29 chapters across the country who all engage in a range of fundraising activities. Allison is particularly involved right now in a gala event that will be happening on November 14th. And we're so grateful for your work on that, Allison. We have walks around the country. We have bike rides around the country. There are tons of opportunities to participate as a contributor, a supporter of breakthrough T1D. But also through advocacy, we have a grassroots volunteer army spread out all over the country, really all over the world, that helps amplify our policy positions as we advocate to government, Congress, regulatory agencies and people can sign up to become a breakthrough T1D advocate. You just go to our website, breakthrough T1D.org advocacy, and you can sign up. So what does that mean? You'll get updates on our policy positions. You'll get action alerts to contact your member of Congress, and I'll talk about one of the specific ones that is out there now. You'll have opportunities to help support our mission. So fundraising is a big part of what we do. Breakthrough T1D has contributed over $2.5 billion since 1970 towards type 1 diabetes research. But we can't do it alone. So we advocate for government funding in the US but also around the world to support this research. And we were one of the leaders in creating a congressional program called the Special Diabetes Program, Bipartisan program started in 1997. $3.5 billion has gone to type 1 diabetes research through this program. This is really significant. The SDP Special Diabetes Program. Help fund TZL that delays the onset. Help fund the automated insulin delivery system that Dr. Leibel talked about, where our pumps can communicate with our CGMs. We can't do it without this government funding. We can't do it without our supporters contributions, but we can't do it alone. So this government funding is really significant, and it's expiring at the end of this year, at the end of December. So we are right now in a huge push to be sure that Congress extends and ideally even increases the SDP so that we can continue to put these kind of funds towards this critical, critical Research. So that's a big priority of anfortinhal. I mentioned the screen for type 1 diabetes act. We're very engaged in insulin affordability to be sure that everyone who needs it has access to affordable insulin. That's a big priority for our organization. And again, the screening and early detection awareness is a big part of our work right now.
- [37:37]
Leslie Heaney
Could I ask about that accessibility piece? Lynn, does insurance cover this more modern technology, monitoring technology for diabetics, the pump and the.
- [37:47]
Lynn Starr
Yeah, so a lot of what we do is about access to ensure that people have access. We have a whole team that works just on access. They work with insurance companies, they work with employers to be sure that the policy grants are favorable for people with type 1 diabetes. We were able to secure Medicare coverage for automated insulin delivery systems, which was a huge.
- [38:11]
Leslie Heaney
Oh, that's terrific.
- [38:12]
Lynn Starr
And something that we worked so, so hard on. So access is a big priority for us here at this organization. Most plans will cover. We also need to ensure that there's choice because as these things have come to market now there are multiple options for them, which is amazing. You know, breakthrough T1D played just a huge role in getting these through the fda. And so for us now to see that this market has developed so significantly is quite gratifying and so important for our community. So it's access and choice are really critical to the work that we're doing now.
- [38:48]
Leslie Heaney
Is the research looking at what turns it on? Because we. Dr. Leibel, you mentioned like sort of the. It's beginning to block. I don't want to get the science wrong. Is it. It's not a beta blocker, but you're, you know, is it looking at that.
- [39:00]
Dr. Natasha Leibel
Environmental factor or trying to figure out what the trigger is triggered that starts that autoimmune attack on the beta cell. And many studies have been done looking at this and there is no clear answer here. Many, you know, including early cow's milk, including viruses, including hygiene hypothesis, all these ideas that are, you know, possible that there, there are viruses that start to trigger. It's just not totally well known.
- [39:30]
Lynn Starr
No, it's not. But the research in cures therapies is really the highlight right now and so incredibly exciting.
- [39:40]
Leslie Heaney
When you say cures therapies, you mean the delaying of the onset?
- [39:43]
Lynn Starr
No, no, no, no, no. I mean developing insulin independence so that we no longer have to inject insulin, that our bodies start making insulin again. We are at a golden age of science around this. In the last two weeks, I visited two different labs that are making insulin producing cells. They're making insulin producing cells that could then be implanted in an individual with type 1 diabetes and make that person insulin independent again. One company, Vertex, just announced that they're going into what's called their pivotal trial, Phase three trial at fdn. They've already been through two phases for this drug therapy, this, cell therapy. This is the trial that post this, you apply for approval from the fda. This is the first time in history that a cell therapy that does this has gone to this phase at the fda. So this is an incredibly exciting time in the science. We know science and researchers will find a Cure for type 1 diabetes, but advocacy is going to bring it to the people who need it. This is a two part project, right? The science without the advocacy and access, this may be too strong, but is almost meaningless if the people who need it can't get it. So this is the work that breakthrough T1D is doing across the board, funding the research, funding the advocacy so that we can tie it up in a bow and be done with this. Which is what we all want, right? I mean, we all really want that. Sorry, Dr. Leibel, you'd have fewer patients and we might not have taken a break or two of it.
- [41:33]
Leslie Heaney
I want to put you out of business, Dr. Leibel.
- [41:36]
Allison Astin
Yeah, I know, but I, you know, you know, can I just say, I mean, I think that one of, you know, the hardships is that people who have type one, right? I look at my daughter and she walks around and she walks proud and she has this and she, you know, like, like Lynn, you know, just gets it done. And like Lynn's daughter and like all of Dr. Leibel's, you know, patients, they walk around and they get this done whilst, you know, conducting their lives. And that is the part that I am in awe of, that you have to live your life like the way you want to live it, right? Like going after your dreams and studying and pursuing all your passions. And yet you have this whole other side of you that is a priority because if it's not, you don't live another day, right? And that to me, her father and I are always looking at her in such awe. I mean, really, like awe like that you, you do everything that you do and you manage, you know, whole diabetes. And I think that that's one of the things that's a problem. It's not like you walk around looking sick. You don't look around, you don't walk around looking like you need help. Like these millions of people are walking around living their lives, doing their thing and they're managing it at such a high level because they have this whole other life saving thing that they got on the side. I mean, that's the most amazing thing to me.
- [43:25]
Lynn Starr
And I think that's really personality, man.
- [43:30]
Allison Astin
It's so true.
- [43:31]
Lynn Starr
People with type 1 diabetes have to make, I think the number's higher, but have to make 180 decisions a day. More people without type 1 diabetes. I have told the numbers higher, but yeah, and that's why cures are really.
- [43:44]
Leslie Heaney
What are so important.
- [43:45]
Lynn Starr
What is guiding us to, you know, until we get to cures, we need to improve lives for people with type 1 diabetes. And we're working hard on that. But the end game is cures and taking off our pumps while it's so great we have them, nobody says, yeah, I would love an insulin pump, can I have one like. But that's why we're doing what we're doing.
- [44:04]
Leslie Heaney
But besides the decision making and the, just the stress of it and the, and the monitoring and all of that, it also is putting a stress on your, on your body. Right? You know, I think that's part of it. For people who are not as closely, you know, have a personal experience or know someone who has it, think, oh, gosh, well, diabetes is managed. Like, we don't have to worry about focusing on diabetes awareness or finding a cure because they have insulin pumps and it's inconvenient, but you know, it's fine and it's not, I mean, it's, it's life altering. And it also, you know, I think in Dr. Reliable you could speak to this. I'm sure Lynn and Allison, you could too. But it's also putting a strain on your body having type one or type two.
- [44:47]
Dr. Natasha Leibel
Well, first I just want to go back just to say what Allison was saying and I, her daughter and my patients, my other patients are really my inspiration in life for what I do because they are living their life with such grace under this burden and just as you said, going about their day to day life and they, they're just so inspirational. So really. And our dream, you know, at the Naomi Berry Diabetes center here is that one day we become a bowling alley. That's what we always say, right? We're just hoping one day that the doors can close. That truly is our dream. But I think that, you know, with people with type one, yes, they can keep their diabetes in good control and try to avoid the long term complications, but the burden of doing so is very high. And if your blood sugar is not well controlled, the long term complications do include the very unfortunate consequences of blindness, of amputation, of heart disease, stroke, nerve damage. These are all, you know, consequences that were at one point inevitable and in the era now of the technology we have, are preventable. But it is a tremendous burden.
- [46:00]
Leslie Heaney
Type 2. We didn't get to type 2 at all. I just want to. You mentioned, Lynn, that your daughter was misdiagnosed as having type 2. There are, I know of people who have been told by doctors that they're on the cusp. Is type 2 diabetes reversible? If you have it, or once you have it, can you not go back? What is the science with that?
- [46:22]
Dr. Natasha Leibel
So type one is not reversible and it is not curable. Type two, the way I like to explain it to patients who have type two is that it can go into remission, okay. So that you can, your blood sugar can go down low enough into the normal range for a long enough amount of time that you always have it, but you're able to manage it in sort of an easier way because you're.
- [46:49]
Leslie Heaney
Still making insulin, right? That was the distinction.
- [46:51]
Dr. Natasha Leibel
Yes. It's an extremely complicated, and I, I think, you know, very complicated situation. In the beginning of type 2, they're generally making enough insulin. If you have it for long enough, you actually often stop making enough insulin. But that's probably beyond the scope of sort of what, what you, you want to know about.
- [47:09]
Leslie Heaney
But yeah. So, Lynn, with all of your work that you're doing with breakthrough, people that are listening, that want to get involved, that want to help, and with all the advocacy with this, wanting to continue this initiative with the government and have them. Are you asking Congress to re up for a certain period of time with that funding initiative? Tell us about that and tell us.
- [47:32]
Lynn Starr
What people do with government funding. Generally. It is challenging situation. Very. It's complex. And as we now look to a new Congress, it's likely to become even more complex. So we would love a multi year renewal of the Special Diabetes Program at an increased amount. But government funding lately in the past few years has been done through what's referred to as a continuing resolution, which extends the existing government funding for a period of time. So if there's a continuing resolution, a cr, the current Special Diabetes Program will be extended. We certainly hope, and we expect for however long that continuing resolution is in place. But ultimately our hope is to have a multi year renewal so that we don't have to every six months or even every year go back and push for this. The good news is we have Widespread bipartisan support. Irish are all bipartisan. Type 1 diabetes doesn't discriminate. It doesn't pick Republicans. It doesn't pick Democrats. If anything, men have a little bit higher incidence than women. But, you know, everyone who knows someone with type 1 diabetes, and most people do now are supportive, and even if they don't know someone, are supportive of our mission, of our work, and encounters of the special diabetes program.
- [48:59]
Leslie Heaney
Well, for everyone listening, I know you can go to Breakthrough's website, right, to get more information about that or to sign up.
- [49:05]
Lynn Starr
If you go to breakthrough t1d.org advocacy, you can sign up to become one of our grass, part of our grassroots army, part of our grassroots advocacy team. And that I would love everyone who's listening to do that, for sure.
- [49:22]
Leslie Heaney
And then Dr. Libel, if you have a family member that has diabetes, you should get screened as a takeaway.
- [49:32]
Dr. Natasha Leibel
I believe you should. Yes.
- [49:33]
Leslie Heaney
Yeah. And that's how it's talking to your.
- [49:36]
Dr. Natasha Leibel
Endocrinologist, what the screening entails and what it tells you.
- [49:40]
Leslie Heaney
And.
- [49:40]
Dr. Natasha Leibel
Yes.
- [49:41]
Leslie Heaney
Okay. Well, thank you so much, all of you, for taking the time. It's an important month. It's a very important topic. And I am. I am just so impressed by this community. I'm so impressed by the incredible work that you've done. Again, I've just had another close friend like Allison, whose daughter has Type one, and I've watched all of the incredible advances that have occurred over the past 15 years in her treatment. So, Lyn, what Breakthrough is doing is working. And, Allison, all the work that you do to raise money for this incredibly important organization is paying in dividends. So keep up the good work. Dr. Leibel, I mean, I hate to say it. We do hope your office becomes a bowling alley. And, you know, we're. But in the meantime, you can go.
- [50:29]
Allison Astin
In there any day.
- [50:31]
Dr. Natasha Leibel
Yeah, exactly. That's right.
- [50:33]
Leslie Heaney
But in the meantime, we're so, so thrilled that you're there on the front lines being such an incredible guide and doctor for all of these children and adults who have. Who have Type one. So thank you all so much for joining. Alison, thank you for coming in at the last minute live from London. So thrilled to see you all and really appreciate you being on the podcast today.
- [50:56]
Lynn Starr
Thank you.
- [50:56]
Allison Astin
And thank you to you, Leslie, for highlighting this in such an important month. And really, this is all about awareness, and thank you for your dedication to your community and your friends and everything that you scan for. So thank you.
- [51:16]
Leslie Heaney
Oh, love you. Stop it. Stop it. You're going to make me cry in the podcast that brings us to the end of this episode of the interview. A huge thank you to Allison Astin, Dr. Leibel and Lynn Starr for joining, and as always, thank you all again for listening. If you enjoyed this episode, I hope you'll rate and review us on Apple Podcasts or Spotify or wherever it is you get your podcasts. A new episode is released every Wednesday and until then, this is Leslie and thank you for joining the interview.