ADA reflections: underrepresentation in diabetes research

All my life, I’ve struggled with completing ethnicity demographic information. At first, it was on standardised academic exams, then college applications, and since my type 1 diabetes diagnosis, health surveys and questionnaires. With a Filipino-American father and Chinese mother who was a Vietnam war refugee, I never quite fit into one box.

Clicking either Filipino or Chinese feels like a conflict of which one I am “more.” Clicking Asian feels minimizing because I don’t represent Japanese, Korean, Malaysian, Thai, Hmong, and so many other Asian cultural identities. Clicking “Other” feels like an outside group that doesn’t matter and doesn’t deserve a label.

So when I saw more sessions on underrepresented communities and health disparities in diabetes at the American Diabetes Association (ADA) 84th Scientific Sessions, I was very excited to see that this topic is gaining traction and hopeful that change is coming.

Diabetes advocate Crystal Ngo Diaz attended ADA 2024 as a #dedoc° voice. One of her highlights was seeing sessions underrepresented communities and health disparities in diabetes on the conference’s agenda. Source: Crystal Ngo Diaz

BMI guidelines: new revisions to reflect a diverse world

The Asian population is a very heterogeneous group from over 50 regions of the world, speaking over 100 languages/dialects. Epidemiological studies of the Asian population have shown a higher distribution of abdominal/central adiposity for any given BMI, and given this, the Asian population has a higher risk for diabetes at the same BMI compared to Europeans.

Graphs showing BMI criteria and cut-points for non-Asian populations vs Asian populations. Source: Crystal Ngo Diaz

Historically, BMI screening cut-points for overweight and obesity have been based on data from people of European descent to define normal weight/overweight/obese and thus risk for metabolic disease including diabetes. To combat this, the World Health Organization (WHO), International Diabetes Federation (IDF), and ADA have recently revised their cut-points for overweight and obesity for Asians to screen at BMI of 23 kg/m².

Including underrepresented populations in research

Additionally, updated guidance in medical and science journals has been developed. The Lancet Group encourages the inclusion of people from minority racial/ethnic populations in research and discussion of the wider context of socioeconomic or other structural drivers of racial/ethnic health disparities. JAMA recommends clearly defining groups labeled “Other” and prefers terms such as underserved and underrepresented over the term “minorities.”

Making sure trials and research are more diverse is a step in the right direction, writes #dedoc° voice Crystal Ngo Diaz. Source: Crystal Ngo Diaz

In clinical practice, healthcare providers should have a greater awareness of the increased risk of diabetes and metabolic disease at lower BMI but still also be aware of the heterogeneity among Asian populations. Race-conscious medicine teaches how racism determines illness and health and encourages providing support to overcome structural barriers to health.

Despite these hopeful developments and discussions, there is still so much work to be done. The Diabetes Control and Complications Trial (DCCT), which has informed nearly every treatment guideline and recommendation establishing the standard of care for T1D, was 96% white. And in the hot new TN10 trial for Tzield, 100% of the participants who received Teplizumab were white!

There continues to be an underrepresentation of our community in diabetes research, especially in pilot research when the focus group is small but powerful as it formulates future research directions. There also very heavily continues to be aggregation of demographic information.

Diversity in diabetes research: what next?

Overall, I am hopeful that more equitable and inclusive diabetes research is coming soon. There is still much work to be done but we’re stepping in the right direction. As we continue to engage with the community, I urge readers to be an ally to underrepresented communities in the diabetes space and save space to uplift their lived experiences. As always, thank you to #dedoc° for providing a platform for me to share my story.

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