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Pediatric endocrinologist Shara Bialo discusses her article, “Why type 1 diabetes screening should be part of back-to-school.” She highlights that back-to-school visits are a critical window to screen for type 1 diabetes (T1D), a disease where sixty-two percent of new cases currently result in life-threatening hospitalizations. Shara shares her personal perspective as both a doctor and a mother with T1D, addressing the guilt and stigma that often stops parents from screening for autoantibodies. The discussion emphasizes that ninety percent of diagnoses happen with no family history, making universal awareness and early detection vital to preventing complications like diabetic ketoacidosis. Learn how a simple conversation during a routine checkup can change the trajectory of a child’s health.

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Transcript

Kevin Pho: Hi. Welcome to the show. Subscribe at KevinMD.com/podcast. Today, we welcome back Shara Bialo. She is a pediatric endocrinologist. Today’s KevinMD article is “Why type 1 diabetes screening should be part of back to school.” Shara, welcome back to the show.

Shara Bialo: Thank you. Thanks for having me back.

Kevin Pho: All right. Tell us what your latest article is about.

Shara Bialo: I am a senior medical director of T1D Immunology at Sanofi, and I am a board-certified pediatric endocrinologist. I live with type 1 diabetes. This topic sits at the intersection of my personal and professional life. This article is about leveraging opportunities to talk about the risk of type 1 diabetes.

Kevin Pho: You point out in your article that 90 percent of new diagnoses for type 1 diabetes have no family history. Tell us more about the context of what that statistic means.

Shara Bialo: That is a myth buster because most people think that type 1 diabetes only runs in families. That is not true. It is true that a family history of type 1 confers up to a 15 times increased risk for family members who aren’t yet affected. However, of the 64,000 new-onset cases that we see a year, 90 percent of them feel like they are coming out of left field.

They have absolutely no idea where this came from. They may have a family history of autoimmunity, and that is an important clue when we see people clinically to surface the topic of type 1 diabetes risk. But the vast majority have no idea where it came from.

Kevin Pho: Tell us a common scenario where someone would first find out they had type 1 diabetes.

Shara Bialo: By and large, people are presenting clinically, which means that they are developing signs and symptoms of hyperglycemia: frequent urination, frequent thirst, and maybe some weight loss. Upwards of 60 percent of kids and somewhere around 20 to 30 percent of adults are presenting in diabetic ketoacidosis. This is when the body has absolutely no insulin left to utilize glucose as fuel and starts burning fat for energy and creating ketones as a byproduct. That throws off acid-base balance and throws people into diabetic ketoacidosis, which is really a crisis scenario.

That is how people are presenting. However, when we think about type 1 diabetes clinically, that is actually the third stage of development. It actually develops over multiple stages prior to that which are asymptomatic and silent. These can be detected with autoantibody testing through blood testing.

Kevin Pho: Around what age do people develop clinical symptoms for the first time for type 1 diabetes?

Shara Bialo: The highest incidence is around 10 to 14 years of age. However, it can happen at any age. If you look at the curves, 10 to 14 is where it peaks, and then it comes down. It starts to rise again after age 40 to 50 or so. We are seeing older adults being diagnosed with type 1. I think it is very common for them to be misdiagnosed as type 2 given that type 2 is a lot more common in adulthood. But there are some clues to consider autoantibody testing for the purpose of differentiating type 1 from type 2.

Kevin Pho: In general, how is type 1 diabetes screened for?

Shara Bialo: It is not happening in a widespread way right now. It is becoming a hotter topic, and it is definitely present in guidelines that endocrinologists follow, like the American Diabetes Association or ISPAD, which is the International Society for Pediatric and Adolescent Diabetes. Actually, just last month at EASD, which is the European Association for the Study of Diabetes, Breakthrough T1D presented a consensus guidance on screening regarding who should be screened and how often. They really made a case for population screening.

I think we will probably have to work toward that if we are going to identify the vast majority of people who present with type 1. Screening as a recommendation has not yet found its way to the U.S. Preventive Services Task Force or American Academy of Pediatrics guidelines. But it is definitely being discussed more frequently.

Kevin Pho: In the article, you talk about your own personal story about screening your children for type 1 diabetes. Tell us more about that.

Shara Bialo: I am an open book. As a parent, I was very hesitant to screen my own children. We hear families talk about not wanting to open that Pandora’s box. I talk about it in terms of Schrödinger’s cat. If you open it, you know for sure what is there. It may be this self-fulfilling prophecy. I felt that same fear and guilt that my families describe in the clinic, which is worry that my children would face the same challenges that I do living with type 1 diabetes.

Even though it is not rational, there is this associated guilt over the fact that it would be coming from me if they have a risk of developing type 1. Ultimately, I got past that with the thinking that screening isn’t so much about predicting doom or assigning blame. It is about giving our family time to prepare as well as information and options for how to manage a diagnosis earlier without having to deal with it in a crisis situation.

Through some hand-holding with my husband and my family, I did get my kids screened. Luckily, knock on wood, they were negative. I think I underestimated the relief in not detecting autoantibodies. I don’t feel like we lend enough attention to that. I will continue to get them screened because screening is not a one-and-done. Autoimmunity can develop over time. I feel much more confident moving forward that, heaven forbid we were to detect autoantibodies, we would be able to manage it on our own terms and on our own timeline. That would convey an almost 100 percent lifetime risk of developing clinical type 1, but we could take advantage of research or earlier monitoring to avoid things like DKA. There are many advantages that come with just knowing earlier.

Kevin Pho: Just give us a basic primer on type 1 diabetes. It is of course more of an autoimmune phenomenon, so give us the different ways that we could screen. You mentioned autoantibody screening, so tell us more about that test.

Shara Bialo: A lot of people think type 1 and they think of blood glucose. That is not wrong, but by the time your blood glucose is abnormal, there has already been damage on a baseline level. We have the opportunity to catch it even earlier by not relying on blood glucose changes. We can catch it before blood glucose changes even come to pass by measuring autoantibodies.

Type 1 diabetes, as you mentioned, is an autoimmune condition. It is where the immune system goes a little haywire for reasons we don’t quite understand yet and starts attacking the beta cells in the pancreas, which are responsible for insulin production. The signal for that is positive diabetes autoantibodies.

The autoantibodies themselves are not the problem. It is like a check engine light. The light is not the problem; it just signals an issue underneath. The autoantibodies are available to measure through commercial assays like Quest or LabCorp. You can also go through large-scale research studies like TrialNet or the ASK Program out of the Barbara Davis Center in Colorado, which stands for Autoimmunity Screening for Kids. You can mail-order tests to your home in order to test for these autoantibody levels.

There are a variety of different ways to check for autoantibodies. The main idea is that if two of the four available autoantibodies are positive, that conveys an almost 100 percent lifetime risk of developing clinical type 1. That really makes the diagnosis of type 1 diabetes regardless of what the blood sugar is. If your blood sugar is normal but you have two autoantibodies, that is the first stage of type 1. As the blood sugars become mildly abnormal or dysglycemic, that is stage two. Stage three is when you become grossly hyperglycemic, and that is the type 1 that we are all familiar with. But we have this latency period before the development of those clinical signs and symptoms where we can act and potentially change someone’s course with type 1 in a very positive way.

Kevin Pho: Now are you advocating for screening the general population or more targeted screening? Are there any risk factors that could portend a potential diagnosis of type 1?

Shara Bialo: If we turn to the last page of the book, hopefully we will get to population screening. With 90 percent not having that family history, I think that is the only way that we are going to help the highest number of people. However, we are not doing anything right now. I think we do need to start somewhere, and it makes sense to start with the lowest-hanging fruit.

The lowest-hanging fruit will be people with first- or second-degree relatives with type 1 diabetes. The other branches that are a little bit lower on that tree are a personal history of autoimmune disease, especially thyroid disease like Hashimoto’s or Graves’ disease, or celiac disease. If there is a personal history of those, or even if that runs in the family, that lends itself to a risk of developing type 1 that really comes close to having a second-degree relative with type 1.

The risk is pretty significant. Those data are only now being published, and we are learning more about what it means to have another autoimmune disease and then develop type 1 later. I think that is where to start. Endocrinologists are taking this on with more and more gusto, but they are limited to the patients that are already in their practice for other reasons, like autoimmune thyroid disease or type 1. They are counseling them to screen their family members. I think ultimately we will have to land at primary care and pediatrics to start to spread this message as a part of preventative care along with well-child checks or end-of-year visits.

Kevin Pho: You mentioned also the role of schools. You mentioned that there are some state laws that encourage type 1 diabetes education in schools. Tell us about those states and those initiatives.

Shara Bialo: This actually started in California thanks to a family who was motivated to advocate after their child unfortunately developed a terrible outcome from undiagnosed clinical type 1 diabetes, having fallen into DKA and not survived. It started as a measure to see the signs of clinical type 1—the drinking, the thirst—and to not chalk it up to other reasons like the flu. That was already in place in school systems to see the signs of type 1 within California.

Now that the word is getting out about the benefits of early detection of type 1 even before symptoms arise, there are efforts to piggyback right on those existing bills. They say: “Yes, learn the signs. But did you know if you have this increased risk in the family, you could catch it before signs even roll out or before DKA could even occur?”

That spread, and it is making its way through legislation on a state-based method. It depends state to state what it looks like. The common thread in all of it is that the Department of Education could take this information and decide to post it on a website or disseminate it at the beginning of school. There are some states where school nurses are taking this on robustly and providing proactive education. It will look different state to state. I think public health messaging is hard, and it takes all hands on deck. Schools are a great place to start.

Kevin Pho: What is the main message that you have for parents who may be listening to you now? Is this something that they should ask their pediatrician about? If their pediatrician doesn’t screen for type 1 diabetes, how should they approach their health care professional?

Shara Bialo: Partnering with the primary care team and the pediatricians is a great idea. If they are not familiar, it gives them a chance to learn about it, and chances are they are familiar because of the rollout of education that has been occurring over the last few years related to this topic. Sometimes people are met with confusion or misunderstanding, and they will get a lab for an A1C if anything. That is not really going to detect diabetes in the earliest stages.

Self-advocacy does become key, especially if you are someone whose family is highly impacted by autoimmunity or by type 1 in particular. It does sometimes require some self-advocacy. That is where there are some people taking action into their own hands and going toward these research studies where they can order kits themselves to the home. There are commercial options for ordering testing independently for diabetes autoantibodies. There are lots of choices for people who are interested in understanding their risk and acting early.

Kevin Pho: So what do you see in the pipeline going forward in a foreseeable future when it comes to screening type 1 diabetes? Are you seeing any potential initiatives when it comes to changes in guidelines? What is coming down the pipeline?

Shara Bialo: It is definitely a hot topic right now. I have been attending pediatric endocrine conferences for over a decade, and in the last three years, it has definitely become a common topic in sessions and in symposia. I do think it is gaining speed and gaining momentum. The professional societies that pertain to diabetes are on board, and I think that invariably and inevitably will trickle into primary care and more general preventative care.

There have been conversations with the larger institutions and societies. I know that patient advocacy groups like Breakthrough T1D have escalated this to the U.S. Preventive Services Task Force. There are advocates in the field who are appealing to the American Academy of Pediatrics. Hopefully, we will hear some positive outcomes from this. It is an exciting time, and it is definitely something to be aware of and to take seriously.

Kevin Pho: We are talking to Shara Bialo. She is a pediatric endocrinologist. Today’s KevinMD article is “Why type 1 diabetes screening should be part of back to school.” Shara, let’s have some take-home messages that you want to leave with the KevinMD audience.

Shara Bialo: My message is simple: Really just consider making type 1 screening a normal part of preventative care. We are at the end of the year now, and end-of-year appointments are sometimes one of the few times that clinicians get to see their patients or families. That moment can really change everything. A quick conversation could prevent a life-threatening hospitalization six months from now and give parents and families time to prepare and monitor. Really, it just comes down to educate, advocate, and empower. It is about understanding the responsibility and power we have as clinicians to help families understand their risk and take action early.

Kevin Pho: Shara, thank you so much for sharing your perspective and insight. Thanks again for coming on the show.

Shara Bialo: Thank you. I appreciate the platform.