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Board-certified pediatric endocrinologist, field medical director for type 1 diabetes immunology (T1D) at Sanofi, and T1D survivor Shara Bialo discusses the article, “Improving type 1 diabetes screening awareness among women is critical. Here’s why.” In this episode, Shara explains the importance of early T1D screening, shares personal insights from her experience as both a doctor and a mom, and discusses key statistics revealing the gender gap in screening awareness. The conversation highlights the emotional impacts of T1D on women, the benefits of early diagnosis, and the need for tailored education strategies. Listeners will gain actionable takeaways on how improved communication and proactive health care practices can empower women to better manage their risk of developing type 1 diabetes.
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Transcript
Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome Shara Bialo. She is a pediatric endocrinologist. Today’s KevinMD article is ”Improving type 1 diabetes screening awareness among women is critical: here’s why.” Shara, welcome to the show.
Shara Bialo: Thank you. It’s so lovely to be here.
Kevin Pho: All right. So let’s start by briefly sharing your story and journey.
Shara Bialo: Yeah, so I’m Shara. When I was nine, I was diagnosed with type 1 diabetes. My story, I don’t think, was altogether unique. I presented with the typical symptoms: the drinking, the peeing, the weight loss. We didn’t have type 1 in the family.
My parents weren’t sure what was going on and dutifully took me to my pediatrician. Outpatient labs were ordered. I went home to take a nap and did not wake up from that nap. I had fallen into diabetic ketoacidosis. My father had to carry me into the emergency room, where luckily pediatric endocrinology was able to meet us because of the prior questioning and seeking of medical care.
It was a pretty traumatic entrance to a chronic disease for my family and for my nine-year-old self at the time. From there, I embarked on life with this sort of unrelenting chronic illness, which has changed drastically over the 30 years that I’ve had it, mostly for the better.
Undoubtedly, it inspired me to pursue a career in pediatric endocrinology. I think I tried to stay away from it actually for a while—pursued other areas, even hem/onc and nephrology—but ultimately ended back in peds endo. I thought that if there was a silver lining to this, my own experience might be able to help pediatric patients.
I personally struggled a lot with the disease in my teenage years and early twenties, with denial and not really wanting to take care of myself in the way that was required. So I pull from those experiences in clinic with my patients. A couple of years back, I had the opportunity to expand my reach by joining Sanofi as a T1D immunology field medical director, where I oversaw and worked with a team of people who help educate other clinicians about early type 1 diabetes detection and intervention.
Kevin Pho: All right. So before we talk about the article, what are some of the most common misperceptions—or misconceptions—that you hear about type 1 diabetes?
Shara Bialo: Yeah, there are many. Type 1 impacts almost two million Americans, but so many more are impacted by type 2 diabetes. So oftentimes there’s this misunderstanding that type 1 is similar to type 2. It is autoimmune in nature, right? Of course, it’s impacted by diet and exercise, but the genetics of type 1 are different, given that it’s an autoimmune disease.
Because of that, and because of this additional misconception that it only impacts children, it actually can be diagnosed at any age—and over half of new cases are diagnosed over age 20. Because of those two points, it’s often misdiagnosed in adults. About 40 percent of adults with type 1 are told initially that they have type 2 diabetes, and then their whole introduction to their care is altered and not optimized for type 1 diabetes.
We’re just doing a lot of work to try to spin the story in the right direction. Another misconception about type 1, or maybe just a misunderstanding or a gap in knowledge, is that it feels like it comes out of the blue. People start having symptoms, and very quickly, they may devolve into diabetic ketoacidosis. If they’re caught early enough, we can avoid that, but they definitely need insulin, and they’re usually pretty sick when they’re identified.
What a lot of people don’t realize—both laypeople and those in the medical profession—is that there are three stages of type 1 diabetes that actually roll out silently under the surface. This was first defined in 2015 in a big publication by the American Diabetes Association, detailing stages 1, 2, and 3. But it’s just not widely known or accepted yet that we have the opportunity to catch the signal of that autoimmune destruction of the beta cells before blood sugars become abnormal and before people experience symptoms or the ill effects of undiagnosed type 1 diabetes.
Kevin Pho: So, just to follow up on that, as listeners know, I’m an internal medicine physician, so I see patients in the adult stage. If I have a patient in front of me who is newly diagnosed with diabetes, are there any questions I can ask in the history that may make me suspect this was previously undiagnosed type 1?
Shara Bialo: Great question. This is also an area that the American Diabetes Association is putting a lot of effort into educating on and even created a sort of mnemonic for it. One consideration is age—if they’re on the younger side, you always want to consider type 1 diabetes, even though it can be diagnosed at any age.
Body habitus is another historical consideration, although with the obesity epidemic, that’s becoming less useful. Other comorbidities, like a history of autoimmune disease—most pointedly autoimmune thyroid disease (Hashimoto’s or Graves)—or something like celiac disease, which tends to cluster in the same family as type 1 diabetes, would also raise suspicion. Either personal or family history of these conditions could be relevant.
Those are all considerations for obtaining diabetes autoantibodies, which are blood tests that can be ordered through commercial labs or through various research studies. There are five total autoantibodies that can be ordered, and if two or more are positive, that means you have a diagnosis of autoimmune type 1.
Kevin Pho: All right, your KevinMD article is titled ”Improving type 1 diabetes screening awareness among women is critical: here’s why.” Tell us more about this article for those who didn’t get a chance to read it.
Shara Bialo: Yeah, so it’s a little bit personal. I’m clearly steeped in type 1; I live with it, I’m a pediatric endocrinologist, and my other gig is making sure other clinicians understand type 1. Despite all of that intimate awareness, when it came to screening my own children—because I have type 1, my children have up to a 15-times increased risk of developing it—I hesitated. They’re five and seven years old; it’s just a matter of taking them for a blood test. But I hesitated, and it took some soul-searching to figure out why.
I think type 1 diabetes—more so than a lot of chronic illnesses—brings with it some heaviness, guilt, and shame, even though it’s nonsensical. Especially as clinicians and scientists, we know we don’t have any control over passing faulty genes on. But there’s still this feeling of guilt, at least for me, that came with screening my kids and potentially uncovering their risk. It didn’t mean I wasn’t always worried about it; it was just like opening Schrodinger’s box and confirming it.
I should be ashamed to say it took years for me to be OK with screening my kids. My husband finally said, “It’s our job as parents to give our kids every possible advantage in life, and screening for type 1 diabetes is one of those advantages. Knowing earlier empowers us to make moves and prepare them to have the best possible outcome.” I already knew this intellectually, but it took that conversation for me to realize I needed to get over my own emotional hump.
I’m not the only one. I talk to parents in clinic all day long about screening their family members. Some are very gung ho—information is power—and they want to do it. Others, like me, shy away because they’re scared. It’s an interesting topic for me, especially layered on what the field of endocrinology is trying to do right now: raise awareness about these earlier stages. It’s a hot topic for research and for developing ways to target the autoimmune nature of the disease rather than simply putting an insulin bandage on the unavoidable.
In this vein, there was a survey conducted by Beyond Type 1, a patient advocacy group with a large focus on type 1 diabetes, and it was commissioned by Sanofi. It polled 1,000 adults living with type 1 and 1,000 caregivers of those under 18 with type 1 about their awareness and feelings regarding screening. I was very interested in this because it’s close to home. It showed that women in particular lag behind men in their awareness that autoantibody screening for type 1 is even available. They were less likely to get screened themselves, more likely to learn of their own diagnoses only after symptoms had started—which means losing a lot of time to prepare—and then they were also more likely to have regrets once they did learn of this option.
A lot of people end up changing big aspects of their life around a new diagnosis—work plans, vacation plans, hobbies, relationships—because it turns everything upside down. The survey was pretty telling, and I’m on a mission to get the word out and make as many people as possible aware of this, because a lot of it starts with us as clinicians. We have these trusting relationships with our patients and can really be a positive influence.
Kevin Pho: Give us a sense of the gender disparity you mentioned. You said that women with type 1 diabetes are screened less often—by about how much compared to men?
Shara Bialo: Yeah, so about half of women consider themselves very proactive, but about 80 percent of women did not screen versus close to 70 percent of men. They were also less likely to be aware—only around 22 percent of women were aware of testing compared to about 40 percent of men.
More of these women regretted not having it done, though not by huge margins: about 71 percent of women versus 65 percent of men. Nearly all of the women said their health would have improved if they’d known earlier, and about 60 percent said they’d recommend the test to understand risk, compared to about 45 percent of men.
So it seems avoidable. At the end of the day, people will make the decisions that suit them best, but they should at least be offered and made aware of the option to detect the disease. Another misconception is what screening even entails. A lot of doctors assume they already screen because they order an annual A1C or a fasting glucose along with a lipid panel. That’s great, but it will only catch someone in the later stages of disease—best case, stage 2 with classic dysglycemia; worst case, stage 3 where you already require insulin. Stage 1 is silent in every sense—no blood sugar changes, no symptoms, just positive autoantibodies.
Layering on autoantibody testing for those with a family history or personal history of autoimmune disease can catch many more people earlier and give them more options for how they want to roll out their life with type 1.
Kevin Pho: And in general, if one were to screen with an autoantibody test, at what age would they start?
Shara Bialo: That’s a great question, and it’s still an active area of research. A lot of the large-scale studies, both in the U.S. and internationally, have been done in younger populations, so we have more data around children. The idea is that screening at ages 2, 6, and close to 10—if you do all three—catches about 80 percent of cases of type 1. If you only screen at age 10, or only one or two of those ages, the percent goes down a bit.
It’s possible that adults who develop type 1 will have already had seroconversion (the appearance of autoantibodies in their blood) as children, but we just don’t know for sure. If there’s an adult with a significant family history of type 1—either a first- or second-degree relative—or a personal or family history of autoimmune disease, it’s worth screening at least once. We’ll learn a lot more as research progresses, like when it’s safe to stop screening. Those are big question marks we still need to explore.
Kevin Pho: And in terms of the autoantibody test, what exactly should we order?
Shara Bialo: Yeah, great question. There are five autoantibodies available, though four of them are recommended by the American Diabetes Association. The fifth is less reliable. The four are:
- Insulin autoantibody (IAA)
- Glutamic acid decarboxylase (GAD) autoantibody
- Islet antigen 2 (IA2)
- Zinc transporter 8 autoantibody
The fifth, ICA, was one of the first autoantibodies ever discovered, but the assay is not as easily reproducible. Commercial labs like LabCorp and Quest do offer panels that bundle these under different names, like “diabetes autoimmune panel” or “islet autoantibody screening.” Usually searching for “type 1 diabetes” or “autoantibody” can pull up the options.
Kevin Pho: So, tell us some paths forward that you’re seeing or that you’re working on, in terms of that type of messaging—not only screening for autoantibodies but perhaps specifically targeting women, since they’re screened less often.
Shara Bialo: Yeah, exactly. It’s a lot of clinician outreach because I think overall awareness is important, but for women in particular there are certain conferences, forums, and podcasts like this, plus social media and infographics. It’s such a fast-paced world that we need to get information out in a variety of formats to different audiences.
Once patients themselves have an experience or realize this is a possibility, they can become mini-advocates and talk to their relatives, especially female relatives. I think it’s hard for women because of the mental load that often accompanies traditional roles—being a mother, spouse, or caretaker of aging parents. That’s not to minimize the role of men, but historically the mental load can fall more on women. When it comes to screening, getting family members screened, making appointments, and following through, it often lands on the matriarch. Validating that and providing information in a way that’s easy to digest and act on is key.
There are also testing options through large research studies like TrialNet or ASK (out of the Barbara Davis Center in Colorado). If you have a family history of type 1—and some of these studies don’t even require that—you can have a test mailed to you for free, so you don’t have to go to a commercial lab. Socializing all these different ways to get testing done is important. Of course, it can also be done at annual physicals or children’s checkups. Making it as accessible as possible is going to be the key.
Kevin Pho: We’re talking to Shara Bialo. She’s a pediatric endocrinologist. Today’s KevinMD article is ”Improving type 1 diabetes screening awareness among women is critical: here’s why.” Shara, let’s end with some take-home messages you want to leave with the KevinMD audience.
Shara Bialo: Excellent. So, type 1 diabetes is an autoimmune disease that can be detected before it causes any ill effects on the body and the family. A blood test can detect those autoimmune roots, which gives people options and empowers them to take steps to live well with type 1. If there’s a family history, there’s up to a 15-times increased risk of getting diagnosed with type 1, so that’s low-hanging fruit to consider testing. Also keep in mind that 90 percent of people diagnosed with type 1 each year do not have a family history, so I think we’ll eventually need to move toward broader screening.
Kevin Pho: Shara, thank you so much for sharing your perspective and insight. And thanks again for coming on the show.
Shara Bialo: Thank you.
