As a board-certified pediatric endocrinologist, the field medical director for type 1 diabetes immunology (T1D) at Sanofi, and someone who was diagnosed with T1D as a child, it’s fair to say that much of my life has revolved around the disease.
I could recite the risk factors for T1D in my sleep; I’ve seen first-hand the perils of an unexpected T1D diagnosis—including diabetic ketoacidosis (DKA); I’m keenly aware that those with a family history of T1D are up to 15 times more likely to develop the disease themselves; and I know just how important T1D autoantibody screening can be in helping to identify a person’s risk of developing the disease, even before symptoms occur.
And yet, it may surprise you to learn that for years, I struggled with getting my own children screened for T1D. As a doctor, I knew it was important. But as a mom—as their mom—I avoided it, filled with tremendous guilt and shame at the prospect of passing my disease along to them (unfounded as that obviously is).
Eventually, I did screen my children for T1D and am so thankful I made that decision when I did. But this experience brought to light a very unsettling reality: living with T1D can have an emotional impact, and if I—a medical professional and someone who is acutely aware of the benefits of T1D screening—struggled with the decision to do so, how might others feel?
This realization becomes even more complex when you consider that many people aren’t aware that T1D screening even exists—particularly women. In fact, according to a subgroup analysis of a survey conducted by Beyond Type 1 and commissioned by Sanofi, while nearly half of women with T1D (48 percent) considered themselves proactive about their health, only one in five screened prior to their diagnosis. What’s more, the findings showed men were both more likely to know that T1D screening exists and more likely to have become aware of their diagnosis before their symptoms started.
Why does this matter? Because not knowing you’re at risk of developing a serious disease like T1D can have impacts. In fact, according to the survey, women with T1D were more likely than men with T1D to say their lives would have been different (86 percent vs. 84 percent) if they’d learned sooner about their diagnosis, and 97 percent of women with T1D said their overall health would have improved had they known sooner about their risk of developing the disease.
This is why, as a health care community, we must do more to recognize this unseen burden and improve our efforts to educate the public—and women, in particular—about the value and importance of T1D screening. We can’t let lack of information or awareness be barriers. We must lead from the front and be more proactive in discussing T1D screening with individuals at risk who walk through our doors.
As HCPs, this is our vocation: to empower people with the tools they need to take charge of their own health. We have a responsibility to create an environment where individuals, regardless of age, gender, or background, feel comfortable expressing their concerns and understand their options. We must keep lines of communication open during annual doctor’s visits to ensure that we’re 1) listening for and addressing potential risk factors for type 1 diabetes and 2) advocating for the importance of early screening. And in this pursuit, there’s always more work to be done. Each and every day, we must come to work thinking creatively and innovatively about how to bridge longstanding divides impeding knowledge-sharing and, perhaps most critically, driving necessary and timely action.
Of course, as I write this, I also recognize that education is not a one-size-fits-all effort, so it’s critical we tailor our education to reflect women’s multifaceted experiences—as mothers, daughters, aunts, and sisters. We must advocate for them and ensure they have the knowledge and resources that allow them to prioritize their health and the health of those they love and care for. Thankfully, by using education to help bridge longstanding awareness divides, I’m confident that we as HCPs can create a future where people can reduce their likelihood of experiencing the unexpected impacts of a T1D diagnosis.
Background and methodology
The Cost of Not Knowing survey, from Beyond Type 1, was commissioned by Sanofi and conducted by Wakefield Research. The Cost of Not Knowing was conducted via two survey instruments—one among 1,000 US adults with type 1 diabetes and a second among 1,000 US caregivers to children under the age of 18 with type 1 diabetes, between March 15 and March 29, 2024, using an email invitation and an online survey. The findings in this document reflect the subgroups of women (n=499) and men (n=500) living with type 1 diabetes.
Results of any sample are subject to sampling variation. The magnitude of the variation is measurable and is affected by the number of interviews and the level of the percentages expressing the results. For the interviews conducted in this particular study, the chances are 95 in 100 that a survey result does not vary, plus or minus, by more than 3.1 percentage points from the result that would be obtained if interviews had been conducted with all persons in the universe represented by the sample.
Beyond Type 1 and Sanofi do not provide medical advice, diagnosis, or treatment—information is provided for educational purposes only. Your doctor is the best source of health information. Talk to your doctor if you have any questions about your health or treatment. The survey was conducted anonymously. Respondents were not made aware of the survey sponsor, and no personally identifiable information (PII) about the respondents was shared with the survey sponsor. Respondents were incentivized for their participation, in keeping with best practice for opinion research.
Shara Bialo is a pediatric endocrinologist.
