Making a Statement

Released in May, “Endocrine Health and Health Care Disparities in the Pediatric and Sexual and Gender Minority Populations: An Endocrine Society Scientific Statement,” was a featured session on the last day of ENDO 2023. Endocrine News spoke to some of the authors about these updated treatment protocols.

Year after year, the Endocrine Society’s Annual Conferences have proven to be an ideal venue to expound upon the Society’s own statements and treatment updates. ENDO 2023 was certainly no exception, as the final full day of the event saw a presentation devoted to a new Scientific Statement on healthcare disparities in often underserved sexual and gender patient populations. 

The Statement, “Endocrine Health and Health Care Disparities in the Pediatric and Sexual and Gender Minority Populations: An Endocrine Society Scientific Statement,” was initially published online in the Society’s Journal of Clinical Endocrinology & Metabolism in May.

This Scientific Statement expands the Society’s 2012 statement by focusing on endocrine disease disparities in the pediatric and sexual and gender-minoritized populations, including pediatric and adult lesbian, gay, bisexual, transgender, queer, intersex, and asexual (LGBTQIA) people. The writing group focused on prevalent conditions such as growth disorders, puberty disorders, bone conditions, diabetes, and obesity.

“I am thrilled to see the Endocrine Society’s commitment to equitable health care with this broadened Scientific Statement,” says first author Alicia M. Diaz-Thomas, MD, MPH, a pediatric endocrinologist at the University of Tennessee Health Science Center in Memphis, Tenn., and chair of the Society’s Committee on Diversity & Inclusion. “This statement provides a foundation to build and grow our training, research, clinical, and advocacy endeavors in endocrine health disparities.”

Capturing an Expanded Worldview

Fatima Cody Stanford, MD, MPH, MPA, MBA, associate professor of medicine and pediatrics at Harvard Medical School and an obesity medicine physician at Massachusetts General Hospital, chaired the session at ENDO 2023 and is co-author of the Statement. She tells Endocrine News that while it was challenging to distill a very dense Scientific Statement with more than 500 references into a small session, they were successful in highlighting key points and changes that have been made since the 2012 statement on which [ Sherita Hill Golden, MD, MHS, of Johns Hopkins University School of Medicine in Baltimore, Md.] was senior author. (Golden retained senior authorship of the current Statement.)

“[Golden] brought in different people that had different perspectives like myself, specifically speaking to the obesity piece of the puzzle and experts like [Joshua Safer, MD, executive director of the Mount Sinai Center for Transgender Medicine and Surgery in New York], who deals with gender minorities and touching on things that if you look back at 2012 weren’t as in vogue I would say in terms of the conversation in endocrinology,” Stanford says. “As we’ve expanded our worldview, our goal was to capture that.”

Empathy Amid Politicization

Unfortunately, that expanded worldview carries with it a rise in unnecessary politicization of people’s health, especially in already marginalized communities. Stanford says the Statement authors were mindful and inclusive when writing the draft and displaying the piece at ENDO. “I don’t think there was anything specifically that would’ve triggered any controversy other than people not believing that we should even talk about gender minorities or people that don’t believe obesity is a disease still,” she says. “In the endocrine community, if we have a great understanding of the complex pathophysiology of these diseases, much in a way that we don’t see as much in other specialties, we should be more understanding.”

And ultimately, understanding is the linchpin of this work. No two people live the same lives, and people from some communities might not even speak the same language. Something as simple as translated signs in the office could make a difference. For Stanford, the patient’s voice is the most important in the room. Stanford points out that her patients have a disease she doesn’t have – obesity — so she can’t pretend to share their everyday experiences. But she can listen.

“Something as simple as, ‘Oh gosh, I came in, and Dr. Stanford, I realized that when I got to the waiting room, there wasn’t a seat for me,’” she says. “And you’re like, ‘What? There’s not a seat?’ And then, you realize that the seats are confining. I would make sure my space, when a person enters who has obesity, reflects a space where they’re able to come in, have a seat — they can be weighed respectfully; they have appropriately sized gowns. I listen to them; I understand how to inform my space that it’s a comfortable environment, and they’re willing to come back because they feel like they matter.”

And that understanding will need to extend outside the clinic into studies where subjects are recruited to reflect the heterogeneity of ethnic groups. Researchers tend to lump groups together, which makes sense because the participants from ethnic groups show up in smaller numbers or they’re not recruited as robustly, and to power studies appropriately, researchers will put them all in one category. But a non-Hispanic Black population might include descendants of the enslaved, Haitian Americans who immigrated, or second-generation Nigerian Americans.

“In the endocrine community, if we have a great understanding of the complex pathophysiology of these diseases, much in a way that we don’t see as much in other specialties, that we should be more understanding.”  — Fatima Cody Stanford, MD, MPH, MPA, MBA, associate professor of medicine and pediatrics, Harvard Medical School; obesity medicine physician, Massachusetts General Hospital, Boston, Mass.

“I think we need to be thoughtful if we want to recruit individuals from different backgrounds by going to where they exist and live and eat and pray,” Stanford says. “It’s going to take diligent effort, and I think it’s going to take a diverse workforce of knowing how to go to where people are. As a Black woman born and raised in the South, I know that many of my community – descendants of enslaved — spend quite a bit of time in the faith-based community. That would be a good place for me to go, but that may not be the same for Cape Verdeans, who are very prominent here in Boston. I’ve not lived the experience of being from that community, so I wouldn’t be the best person to inform how we recruit and retain those individuals. We need to be thoughtful in that in that respect.”

Overcoming Biases

This Scientific Statement is almost two months old and will likely be updated again in another ten years. In the meantime, Stanford encourages endocrinologists to take the Harvard Implicit Association Test, which can reveal preferences for things like racial, ethnic background, or body type. “Many people have blind spots and say, ‘Oh, I don’t have any biases.’ But by the very fact that we’re human, we have biases.”

The first step in solving any problem is admitting there is one. Stanford says she hopes this Statement gets people to know where they may have their deficits. “And when you look at yourself, begin to recognize, ‘Wait a minute, I can do better. And then by that, I can do better for my research subjects, my patients,’” she says. “If you collectively do both, you can do better for both groups.”

Bagley is the senior editor of Endocrine News. He wrote about a new approach to treating hypothyroidism in the July issue.

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