Understanding the ins and outs of Type 1 diabetes and its stages is key in accurately screening for and managing the disease. In the first of a three-part series, we're joined by Associate Vice President of T1D Education and Clinical Implementation at JDRF and 2023 Diabetes Educator of the Year Anastasia Albanese-O’Neill, PhD, APRN, CDCES. In this episode, Dr. O'Neill talks about common misconceptions of T1D, as well as the stages of T1D and the importance of evaluating and understanding these stages when diagnosing and working with people and families affected by T1D. Educational grant support for this episode is provided by Sanofi. Learn more about T1D risk screening and additional resources on JDRF's website: https://www.jdrf.org/t1d-resources/t1detect/ Learn more and gain access to T1D screening kits via TrialNet: https://www.trialnet.org/ or ASK: https://www.askhealth.org/?_ga=2.144097589.1682361371.1702935724-1205645336.1702935724 Learn more about the Search for Diabetes in Youth study here: SEARCH FOR DIABETES IN YOUTH
Understanding the ins and outs of Type 1 diabetes and its stages is key in accurately screening for and managing the disease. In the first of a three-part series, we're joined by Associate Vice President of T1D Education and Clinical Implementation at JDRF and 2023 Diabetes Educator of the Year Anastasia Albanese-O’Neill, PhD, APRN, CDCES. In this episode, Dr. O'Neill talks about common misconceptions of T1D, as well as the stages of T1D and the importance of evaluating and understanding these stages when diagnosing and working with people and families affected by T1D.
Educational grant support for this episode is provided by Sanofi.
Learn more about T1D risk screening and additional resources on JDRF's website: https://www.jdrf.org/t1d-resources/t1detect/
Learn more and gain access to T1D screening kits via TrialNet: https://www.trialnet.org/ or ASK: https://www.askhealth.org/?_ga=2.144097589.1682361371.1702935724-1205645336.1702935724
Learn more about the Search for Diabetes in Youth study here: SEARCH FOR DIABETES IN YOUTH
Dana
Hello and welcome to ADCES' podcast, The Huddle: Conversations with the diabetes care team. In each episode we speak with guests from across the diabetes care space to bring you perspectives, issues, and updates that elevate your role and inform your practice. Today's podcast explores the latest in Type 1 Diabetes, separating fact from fiction, busting myths, and exploring the cutting-edge updates in the world of diabetes care.
I'm your host, Dana Moreau, Director of danatech, and I'm thrilled to be your guide on this journey through the complex and really ever evolving landscape of Type 1 Diabetes. One note before we start, the information in this podcast is for informational purposes only and may not be appropriate or applicable for your individual circumstances. This podcast does not provide medical or professional advice. Please consult your healthcare professional for any medical questions.
Very happy to introduce today's guest, Dr. Anastasia Albanese O'Neill, the Associate Vice President of T1D Education and Clinical Implementation at JDRF. Dr. Albanese O'Neill transitioned to a career in diabetes care, education, advocacy, and research in 2008 after her oldest child was diagnosed with T1D. She's also the 2023 ADCES Diabetes Care and Education Specialist of the Year. Anastasia, welcome to The Huddle.
Anastasia
Delighted to be here.
Dana
Okay, so today one of the key things we want to address is dispelling myths about type 1 diabetes. What are some of the common misconceptions or myths surrounding type 1 diabetes that you and others, you know, encounter in your practice, or honestly just out in the world in general?
Anastasia
Dana, thank you so much for that question. It's really important because if we think about type 1 diabetes in the United States, at this time it's only about 5% of diagnosed diabetes. And you are right, there are some really significant misconceptions.
Let me start with the first one, and that is age at diagnosis. You know, type 1 used to be called juvenile diabetes. Why? Because we only thought it was diagnosed in childhood. But the truth is, what we know, is that about half of people diagnosed with type 1 diabetes are diagnosed as an adult. So it is not a childhood diagnosis, it can strike at any age. We have volunteers at JDRF who have children who have been diagnosed at the age of 2 and at the age of 52. So we need not only people in the general public, but health care professionals to think about type 1 diabetes as a diagnosis that can affect people across the lifespan.
Number 2. Family history in type 1 diabetes is rare. When we think about type 2 diabetes, you can name all kinds of people in your family. Sisters, brothers, parents, aunts and uncles, grandparents who have type 2 diabetes. Not the case in type 1 diabetes. 90 percent of the time, there is no family history, which makes it even more important for health care professionals to get it right, the diagnosis, because people aren't thinking about it. It comes most of the time 9 out of 10 times out of the blue. And that is a challenge.
And I guess the third thing I will say is type 1 diabetes affects people of all colors, and we know from, uh, data from the Search for Diabetes in Youth study that the steepest increase is among, uh, children of color. And so, we need to be looking, again, not just, um, at, individuals of a specific race or ethnicity, but in everybody because this diagnosis can affect everyone.
Dana
I mean given some of these myths that you've just brought up, I imagine that maybe misdiagnosis, especially of older adults is It's maybe not common, but not unheard of.
Anastasia
It's more common than you think. A challenge again, sort of a legacy challenge in type 1 diabetes is because we've invested most of our research dollars in studying children and adolescents, we don't have a lot of data on adults. But what we do know from some recent publications is that about 40 percent of the time, people who are adults and actually have a diagnosis of type 1 diabetes are initially misdiagnosed with type 2. Think how dangerous this can be. People with type 1 need insulin. But in these cases, when they're misdiagnosed as somebody with type 2 diabetes, they're often given oral medications like Metformin or maybe Ozempic, and they become progressively sicker and sicker and may end up in the emergency room. For the population we do have data on, think about this: children and adolescents, one in two in the United States, a full 50%, and this is in the Standards of Care from the American Diabetes Association, are diagnosed in diabetic ketoacidosis, meaning they are very sick at diagnosis. So two things, we want to catch it before you end up in the hospital, and number two, we want to be on high alert in the adult population.
Dana
So it sounds like, Anastasia, that our knowledge of T1D continues to evolve. So my question for you is, I mean, what's next?
Anastasia
So it's not just about new devices and new ways to monitor glucose and automated insulin delivery. We also have learned a lot more about the history, the natural history of type 1 diabetes and how it progresses from a very early diagnosis into the need to replace insulin. So let's just review. We think type 1 diabetes has, people who are ultimately diagnosed have a genetic predisposition. But let me be clear, most people with that genetic predisposition do not go on to get a diagnosis. In fact, 9 out of 10 don't get diagnosed with type 1 diabetes. In fact, I'm walking around right now with type 1 diabetes genetic risk, but I don't have it. So many people have genetic risk out there in the world. We think that something in the environment triggers the immune system to attack the insulin producing cells in the pancreas and destroy them. When that process gets underway, we can use now, thanks to decades of research, a simple blood test to identify what are called autoantibodies that tell us that the immune system, again, has marshaled an attack and is actually destroying the insulin producing cells.
So we used to think, okay, you don't have type 1 diabetes, and now you do have type 1 diabetes, and you need insulin. Not correct. In 2016, a paper was published that described the stages of early type 1 diabetes and these are as follows: Stage 1 is two or more confirmed autoantibodies, but blood sugars are completely normal and the person has no symptoms. The only way we know that this attack is underway is by doing a blood test for autoantibodies. People move on to stage 2 when enough of the insulin producing cells have been destroyed for people to experience dysglycemia, or high blood sugars. And these can be detected using an oral glucose tolerance test. And then stage 3 is when a person has a classic diagnosis of type 1 diabetes. People in stage 2 also have no symptoms. But people in stage 3 are, as we would classically think of a diagnosis, that they are thirsty, going to the bathroom frequently, losing weight, and have very high glucose levels. So those are the stages of type 1 diabetes. Why does that matter? Well, the most important reason that it matters is because there have been a number of studies, both here in the United States and internationally, that have shown that if we screen you for type 1 diabetes risk as a child, and we follow you and provide you with some education, we can get DKA rates, which are now, remember, one in two in the United States, down to less than two percent.
And I want everyone listening to think about the impact of DKA. Expensive stay in the emergency room and likely the ICU. But more importantly, the trauma for the individual, the trauma for the family, and starting off with a new diagnosis in that context. We have a very powerful tool to eliminate DKA at diagnosis, but we need to screen.
Dana
Question about the stages. If someone is diagnosed with stage 1, are they definitely going to move into stage 3 at some point?
Anastasia
That's a great question. So, from the evidence, and again, 40 years of studies, and I'm happy to point our listeners to a number of them, including Teddy, Daisy, Frida, TrialNet, um, ASK. There's been a significant investment in this space. The answer, unfortunately, is yes. If you have two or more confirmed autoantibodies, your lifetime risk of progression to type 1 diabetes approaches 100%. The challenge is we don't know when. It might be in two months, it might be in two years, it might be at 20 years. But once we see two or more persistent autoantibodies, we know, again, that lifetime risk is 100%. We think the progression is quicker in very young children.
Dana
And it sounds like, I mean, the screening process is pretty easy. You're saying it's just like, is it a blood draw? Is it a finger prick? What does that look like?
Anastasia
Great question. It can be both. Um, so a couple of programs that I want to, uh, draw, uh, the listener's attention to that are really easy to refer to. The first is TrialNet. Many people have heard of TrialNet, but if you haven't, you should know about it. Go to TrialNet.org. Any first degree relative, ages 2.5 to 45, can be enrolled in this program. It's free, and they will screen you for autoantibodies. They can do it with a finger prick, a capillary draw, or phlebotomy, a blood draw. And they'll actually send a kit to your house, and you can go to a local lab and get the blood drawn. So it's not like you have to fly somewhere or drive somewhere to do it. They also screen second degree relatives. So remember, first degree relatives, parents, siblings, children. Second degree relatives might be grandparents. Grandchildren, more likely. And cousins, right? Aunts and uncles. So they will screen second degree relatives, but the age range is narrower, 2. 5 to 20.
And then I want to draw your attention, this next study is for anybody. So anybody ages 1 to 17 in the United States. So the parents would need to give consent. They will screen anybody, family history or not, for type 1 diabetes autoantibodies and also for celiac disease. And that's called the ASK study. And, um, you can find information about both studies. Might be easiest to go to the JDRF website, jdrf.org/t1detect. We try to keep up to date on any screening opportunities for health care professionals and individuals. So those are up there and you can easily link out and learn more.
Dana
Great. I didn't know though that that, uh, test for both, uh, type 1 as well as celiac existed, which makes so much sense because I know so many people with T1 who also have celiac or suspect they do. So whoever thought of that, nice job.
Anastasia
Some great scientific minds out there, so yes.
Dana
Again, that's so much new information about screening, but tell me more, I mean, really tell us what is the importance of knowing whether you're stage 1, stage 2?
Anastasia
I love that question, Dana. Let's keep it related to screening. So we do have research studies recruiting right now, literally as we are speaking, for people in stage 2 type 1 diabetes. Why are these stages important? I feel like I didn't share enough about that. Because if we discover people in stage 1. More importantly, probably stage two, who already have some changes in their blood sugar levels, right, and they have those persistent autoantibodies. There's a study recruiting right now that's funded by the National Institutes of Health called Stop T1D. If we can screen people in advance and we can identify them, we can move them into that study. The other important thing about screening, um, Dana, is that a lot of our research around therapies that change the course of type 1 diabetes, that protect the insulin producing cells in the pancreas, we, of course, like all clinical research, we initially test those therapies in healthy individuals who don't have type 1 diabetes, but then that next phase of study is with people at new onset.
Here's the key. Remember, the immune system is attacking and destroying those insulin producing cells, so if you're going to enroll in a study at diagnosis, you need to do it usually within the first 100, 120 days. If you wait for a diagnosis, and you're in diabetic ketoacidosis, and you're in the ICU, it's hard to be thinking about research. But if you've screened, you know you've got two or more persistent autoantibodies, you're under the care of a health care professional who is giving you advice. And then you find that you need insulin therapy, that you're in stage 3 type 1 diabetes, you need to replace insulin, that is a much better place to think about, do I or do I want to enroll my child in research?
So Dana, boiling it down to one sentence, what are the three primary benefits? First, we know from research, as we discussed, we can reduce the incidence of DKA at diagnosis from about 50% all the way down, in many cases, in many of our studies, to less than 2%.That's a tremendous benefit. Second, people can be introduced, especially if we pick them up when they have two persistent autoantibodies but they don't have to take insulin yet, we can introduce them to really important clinical research that can help us figure out how to prevent the onset of type 1 diabetes. And third, it gives people time to plan and prepare. Nobody wants a diagnosis of type 1 diabetes, but it's much better to have it occur in a way that's more managed than to end up in the ICU. And I know that because I lived it with my child. And so I really think it's important that we give people the time to get ahead of that diagnosis.
Dana
And I understand that with my son, we were probably about a week away from it. Uh, but with most of the people and friends I have with type 1 children as well, they definitely ended up with DKA. And uh, it’s a painful place and a scary place to be. All right, so before we end today, Anastasia, is there something that we missed, something that you really feel would be important for health care providers to know, I mean, about screening or again, other recent developments in type 1 diabetes?
Anastasia
Thank you for that question. I think that, I was trained as a nurse again back in 2007/2008 when I did my initial education. We weren't talking about continuous glucose monitoring very much. We weren't talking about automated insulin delivery. And we weren't, certainly were not talking about the ability to detect type 1 diabetes early and intervene. So I think for anybody out there who's listening and this is new information, it's a great opportunity to learn more. I know there are resources on the ADCES website and great opportunities at clinical conferences and for more online education. And if you are familiar with this information, share it with a colleague, because I cannot guarantee that everybody has heard of staging, has heard of screening, and has heard of these amazing new management tools we have in Type 1.
Dana
That's terrific. Well, thank you, Anastasia, so much for being our guest. And honestly, just thank you for everything you're doing. Please follow Anastasia on different social media platforms or on LinkedIn to know what she's up to. Literally on her LinkedIn profile it says, “on the hunt for a cure for type 1 diabetes”, which I love. So again, thank you so much, and I'm sure we'll have you back as a guest or we'll be seeing you in numerous other places in the future.
Anastasia
And thank you, for you personally and for ADCES for being a partner in this work because this requires a big team and I'm just grateful for the opportunity to share this information and to work with your extraordinary organization. So thanks for that.
Dana
We love it. Thanks Anastasia.
And thank you everyone for listening to this episode of The Huddle. Make sure to download the resources discussed on today's episode. You can find them linked in the show notes at adces.org/podcast. And remember, being an ADCES member gets you access to many resources, education, and networking opportunities. Learn about the many benefits of ADCES membership at adces.org/join.