Improving type 1 diabetes screening awareness among women [PODCAST]

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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. They dutifully took me to my pediatrician, and 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. But it was a pretty traumatic entrance to a chronic disease for my family and for, you know, my nine-year-old self at the time.

And from there, I embarked on life with the sort of unrelenting chronic illness, which has changed drastically over the thirty years that I’ve had it, mostly for the better. And undoubtedly, it inspired me to pursue a career in pediatric endocrinology. I think I tried to stay away from it, actually, for a while. I think that I tried to pursue anything else and dabbled with the idea of heme-onc and nephrology. But ultimately I ended back in peds endo and thought that if there was a silver lining to this, it was that my own experience might be able to help pediatric patients. I had personally struggled a lot with the disease in my teenage years and my early twenties, with denial and not really wanting to take care of myself in the way that was required. And so I pull from those experiences in clinic with my patients.

And then 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 oversee 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. You know, type 1 impacts almost two million Americans, right? 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? I mean, of course it’s impacted by diet and exercise, but the genetics of type 1 are different, given that it’s an autoimmune disease. And 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 twenty, 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, you know, their whole introduction to their care is altered and not optimized for type 1 diabetes. So we’re just doing a lot of work to try to spin the story in the right direction.

Also, a 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, right? People start having symptoms and very quickly they may devolve into diabetic ketoacidosis, or 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 lay people and in the medical profession, is that there are three stages of type 1 diabetes. The first two actually roll out silently under the surface. This was kind of put out into the academic sphere in 2015 with a big publication by the American Diabetes Association to define 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 ever become abnormal and people ever have to experience symptoms or the ill effects of undiagnosed type 1 diabetes.

Kevin Pho: So just a follow-up to that, as listeners know, I’m an internal medicine physician, so I see, of course, patients in the adult stage. If I have a patient in front of me who is a newly diagnosed diabetic, are there any questions I can garner or ask in a history that may make me suspect that this was a 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 they created a sort of mnemonic for consideration of patients in front of you. One is age, right? 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, I think, historically is one of the considerations, although with the obesity epidemic, it makes it a little harder to kind of put people in buckets of type 1 or type 2 simply based on BMI. Other comorbidities, like medical history: If there’s a history of any autoimmune disease, but most pointedly autoimmune thyroid disease, either Hashimoto’s or Graves, or something like celiac disease, which tend to cluster in the same sort of family as type 1 diabetes, you would want to consider the possibility of an autoimmune form of diabetes like type 1. Either personal or family history, right? They could have their own history, or it could run in the family. Those are all considerations for obtaining diabetes autoantibodies, which are their own blood tests, right? Their serum tests that can be ordered through commercial labs or through other research studies. They’re pretty widely available, and there are five total autoantibodies that can be ordered. If two or more are positive, that means that 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. You know, I am clearly steeped in type 1. I live with it. I’m a pediatric endocrinologist. My other gig is making sure that other clinicians understand type 1. And despite all of that and my intimate awareness of this disease, when it came to screening my own children. Because I have type 1, my children are at up to fifteen times increased risk of having type 1 because of my history. They’re five and seven years old. It’s just a matter of taking them for a blood test, right? But I hesitated, and it took some soul searching for me to kind of figure out why I was hesitating.

I think that type 1 diabetes, more so than a lot of chronic illnesses, brings with it some heaviness, some guilt and shame, and the idea that it’s, even though it’s nonsensical, right, especially as clinicians and scientists, we know that we don’t have any control over passing our faulty genes on. But there’s still this feeling of guilt, especially for me, that came along with screening my kids and potentially uncovering their own risk of developing type 1. It didn’t mean that I wasn’t always worried about it. It was just kind of like opening Schrodinger’s cat, opening it and confirming, right, that it was true. I should be ashamed to say that it took years for me to be OK with screening my kids, and it was my husband who turned to me and 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 steps and prepare and ensure that they have the best possible outcome.” And I know all of that, right? But it took this sort of conversational slap in the face for me to be like, “No, this is right. I need to get over my own emotional hump.”

But I’m not the only one, right? I talk to parents in clinic all day long about screening their family members, and some are very gung-ho and information is power from the get-go, and they want to do it and they want to take it on. And others, like me, really shy away from it because they’re scared. And so it’s an interesting topic for me, and it’s especially interesting layered on top of what the field of endocrinology is trying to do right now, which is raise awareness about these earlier stages. It’s a hot topic for research and for development of how we can target, you know, the autoimmune nature of the disease rather than putting an insulin Band-Aid on, you know, the ultimate, unavoidable sequelae.

So in this vein, there is a survey conducted by Beyond Type 1, which is a patient advocacy group specific to diabetes, with a large focus on type 1 diabetes, and it was commissioned by Sanofi. It basically polled a thousand adults living with type 1 and a thousand caregivers of those under eighteen living with type 1 about their awareness and thoughts and feelings about screening. I was very interested in this because, you know, it’s close to home. And it turns out, and maybe I’m also looking at this a little biased because I am a female, but it did show that women in particular lagged behind men with their awareness that autoantibody screening for type 1 is even available. They were less likely to get screened themselves. They were more likely to become aware of their own diagnoses only after their symptoms had already started. You lose a lot of time and the ability to properly prepare for the chronic disease. And then they were also more likely to have regrets once they did learn of the option and, you know, kind of saw how life played out for them. They were more likely to have regrets about not getting screened sooner and said that, you know, their life could have been different.

A lot of people end up with the onset of an unforeseen diagnosis of type 1. They end up changing big aspects of their life around it, right, because it just turns everything upside down, whether it’s work plans, vacation plans, hobbies, or relationships. It can really have a far-reaching ripple effect on someone’s personal life, And so it was pretty telling, the survey. And so I am on this mission to get the word out and to make as many people as possible aware. A lot of that starts with us, right, with the clinicians, because we have these trusting relationships with our patients and can really be a positive influence in that space.

Kevin Pho: So give us a sense of the gender disparity you mentioned. You mentioned that women were less likely to be screened for type 1 diabetes. About how much less likely compared to men?

Shara Bialo: Yeah, so almost half of women consider themselves very proactive, but about 80 percent of women did not screen, versus close to 70 percent of men. They also were less likely to be aware. Only 22 percent were aware, and close to 40 percent of men were aware of it. So there just seemed to be some significant differences there. More of them regretted it, not in such huge margins, but about 71 percent of women regretted not taking the test versus about 65 percent of men. Equal numbers say their life would have been different, but nearly all of the women said that their health would have improved, and they would have recommended it for others in higher numbers. About 60 percent of women said that they would recommend getting an autoantibody test to understand their risk versus about 45 percent of men. And so it seems to be avoidable, right? I think that at the end of the day, patients 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.

And speaking of misconceptions that you brought up at the beginning of our talk, the other one is what screening even entails. I think a lot of doctors hear “screening” and they’re like, “Oh, I screen all my patients,” because they order, you know, an annual A1C, or they’re getting, you know, a fasting glucose along with, say, a lipid panel. And that’s great, right? Assessment of blood sugar is great, but it’s only going to catch someone in the later stages of disease, right? Best-case scenario, in stage 2, where you have classic dysglycemia. Worst-case scenario, in stage 3, where you already require insulin. So stage 1 is silent in every sense. There are no blood sugar changes. You don’t feel anything, but your autoantibodies are positive. So layering on autoantibody testing for those with a family history, or those with a personal or family history of autoimmune disease, has the capacity to catch many more people in the earlier stages and give them options for how they want to, you know, roll out their life with type 1.

Kevin Pho: And in general, if one were to screen with an autoantibody test, what age would they start screening?

Shara Bialo: That’s a great question. This is still an active area of research. We’re still learning a lot. A lot of the large-scale studies that have taken place, both domestically and internationally, have been conducted in younger populations. So we have a lot of data around children, and the idea that screening at ages 2, 6, and kind of close to 10, if you do all three, will catch about 80 percent of cases of type 1. If you only screen at, you know, one or two of those ages, the percent goes down a little bit. It’s possible that adults who develop type 1 will have already had seroconversion, right, that appearance of autoantibodies in their blood, as children. But the problem is we just don’t know for sure. So if there’s an adult with a significant, you know, with a family history of type 1, either first- or second-degree relatives, or, again, that autoimmune history, it’s worth screening them at least once, I think. And I think there’s a lot more that’s going to come out to know when it is safe to stop screening. You know, at what point do we know that, OK, this person hasn’t developed autoantibodies and we know they’re not going to? Those are still big question marks that we need to explore.

Kevin Pho: And in terms of the autoantibody test, what’s the specific test that we order?

Shara Bialo: Yeah, great question. So there are five autoantibodies that are available. Four of them are actually recommended by the American Diabetes Association. The reason they left off the fifth one is that it’s a little bit of an older assay, not as reliable. But the four that they recommend are insulin autoantibody, or IAA, as it sometimes shows up in EMRs; glutamic acid decarboxylase, or GAD, autoantibody, which tends to be a pretty commonly known one, right? A lot of clinicians know about GAD. It’s not specific to type 1; it can be positive in other autoimmune conditions, but it counts, if positive, as one of the two autoantibodies. There’s also islet antigen 2, or IA-2, which is specific to type 1, and zinc transporter 8 autoantibody, which is also specific to type 1.

The fifth one is ICA, which is one of the first autoantibodies ever discovered, and again, just a little clunky in terms of how the assay is conducted, and it’s not as easily reproducible. And so it’s out there and it’s able to be ordered, but the data don’t support it as much as the four that we just mentioned. LabCorp and Quest and commercial labs do offer the ability now to cluster these labs under different titles, like diabetes autoimmune panel or islet autoantibody screening, different names. So usually searching either type 1 diabetes or autoantibody can pull up a lot of these 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 targeting women, because they’re, on the whole, screened less often than men.

Shara Bialo: Yeah, exactly. So just a lot of, well, clinician outreach, because I do think awareness is important overall, but for women in particular, certain congresses and conferences that attract more females, getting the word out, and in certain forums for articles and podcasts. You know, trying to take a varied approach. People get their information in such different ways now: snippets on social media, or podcasts like this, infographics. It’s such a fast-paced world that getting the information out in different ways and in different markets is going to be key. And I think that, you know, it’s the patients themselves, too. Once they have an experience or they realize that this is a possibility, they become advocates, and then we are empowered to talk to their relatives, their female relatives.

I think that it’s hard, especially for women. I think a lot of it is the mental load that comes along with just, you know, say, being a mother or being a spouse or a caretaker of, say, aging parents, not to minimize the role of men in the family unit at all, because, you know, we all know and love many significant members of our family. But there seems to be, historically, this mental load that falls on women, and when it comes to screening and getting family members screened and making appointments and, you know, following through, oftentimes it does land on the matriarch of the family. And so I think validating that and providing information in a way that is easy to digest and absorb and follow through on is going to be key.

There are testing options as part of large research studies like TrialNet or ASK out of Barbara Davis in Colorado, where, if you have a family history, and some studies don’t require a family history, you can have a test mail-ordered to you for free to conduct in the home, right? You don’t even need to make your way to a commercial lab to have that done. So it’s just socializing all of the different ways to get this accomplished. Obviously, the easiest way would be if you’re seeing your, you know, for your annual physical, or you’re taking your kids for their annual checkups ahead of school, or getting labs for any other reason, to layer it on. But there are many different ways to pursue this if one’s interested, and I think just making it as accessible as possible is going to be the key.

Kevin Pho: We’re talking to 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, let’s end with some take-home messages that 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 can have any ill effects on the body and the family. It’s a blood test that can detect those autoimmune roots, and it just gives people options and empowers people to take the appropriate steps to live well with type 1 diabetes. If there’s a family history, there’s an up to fifteen times increased risk of getting diagnosed with type 1, so that would be low-hanging fruit to consider testing, family history of autoimmunity. But always keep in mind that 90 percent of people who are diagnosed with type 1 each year do not have a family history. So I think we’ll eventually need to make our way to broader screening.

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

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