Providers work to improve care for trans people

Healthcare experts see need for expanded knowledge and experience in treatment

by Elaine Shelly

Henry Ng, MD, crosses a street in busy afternoon traffic after grabbing lunch while talking about caring for his transgender patients.

“It’s important to go beyond hormonal care and surgical care,” Ng says. “It’s about everything.”

Everything, for Ng, includes treating trans people in his dual roles as director of the Transgender Surgery and Medicine program and a primary care physician at the Cleveland Clinic Lesbian, Gay, Transgender, Bisexual Clinic. Ng promotes age-appropriate screenings for adults, such as cancer screenings, diabetes screenings and checks for high cholesterol. Ng attends to the anatomy his patients have at birth as well as their current anatomy. For example, if a patient has had their breasts removed, the patient still needs to be screened for breast cancer. Or, if a patient chooses to halt hormone therapy, their bone density and strength need monitoring.

Neurologist Mary Rensel, MD, became curious about improving care for transgender people as she observed a Mellen Center patient who started transitioning as an adolescent. The Mellen Center for Multiple Sclerosis is a part of the Cleveland Clinic in Cleveland, Ohio, where Rensel heads the Pediatric MS and Wellness program. Before transitioning, the patient would sometimes present as female with a traditionally female name and sometimes as male with a traditionally male name.

“I wanted to know more,” says Rensel. “I don’t know anyone who has a wide depth of experience (in treating transgender people with MS).”

Rensel’s curiosity led her to research and write “Recommendations to Address the Unique Clinical and Psychological Needs of Transgender Persons Living with Multiple Sclerosis” with other Mellen Center staff. The article is one of a few research articles on transgender people with MS and the first one that makes best practices recommendations in treating this MS population.

In the article published in 2022 in the International Journal of MS Care, the authors outline the case history of a pediatric MS patient who was treated at the Mellen Center. The patient was referred for psychotherapy to treat depression, anxiety and cognitive difficulties. During the course of psychotherapy, the patient, who was presenting as female at the time, expressed a desire to transition to male and did so several years later. The article suggests ways clinics and providers can make sure transgender people are welcomed and affirmed.

Lack of information
The Mellen Center has implemented the suggestions in the article, such as having gender-neutral bathrooms and making sure staff address patients in ways that are welcoming. Despite the article’s recommendations, there is often a lack of information specifically for trans people among other MS clinics across the country. The Neurological Institute at the Cleveland Clinic has information about hormone therapy and its impact on MS. The MS and Immunology Treatment Center at Cedars-Sinai has a link to a video with a diversity and inclusion statement that indicates healthcare professionals are interested in learning their patient’s pronouns. A study at the MS clinic at the University of California at San Francisco published in 2021 concludes that because of the lack of openness, inclusion and representation of sexual and gender minorities leave MS patients with unmet clinical and social needs.

Ng is acutely aware of the difficulties his patients face and tries to make sure they have a positive experience. Most of his patient’s past negative experiences stem from microaggressions, such as individual providers neglecting to use proper pronouns, as well as from macro aggressions, as in the systemic ways gender care is excluded.

“Education is super important to raise awareness,” Ng says of how he has worked to educate other providers and students who are entering medical careers.

For Ng’s transgender patients who opt for hormone therapy, Ng keeps an eye on the physical and metabolic changes that take place while using estrogens or testosterone. He also monitors other habits such as cigarette smoking.

More research needed
Ng says he has treated a few transgender people who live with MS. He says he knows of no current studies that examine the impact of hormone therapy on MS.

“There’s a whole lot to look at and know,” Ng says. “Quite frankly, there’s been a lack of interest [among researchers].”

Rensel added that hormone therapy using estrogens may increase the risk of autoimmune disease, but there may be benefits to hormone therapy that outweigh the potential risk.

Other studies, however, report that high levels of estrogen have been shown to have a benefit against MS. For people who have the relapsing-remitting type of MS, the hormones may make the relapses, when symptoms appear, less frequent.

“We have to consider the risk benefit,” Rensel says. “We have a lot of treatments to use for MS and we’re watching with MRIs. We have to honor [the patient’s] priority at the time.”

Despite the lack of research on transgender people, more health organizations provide affirming care and are held in account when they do not, Ng says. Because of this, he sees access to quality healthcare improving for transgender people.

“Our patients have more recourse,” he says. “It is important for them to know that they can advocate for themselves.”

Writer Elaine Shelly was diagnosed with MS in 1991.