Jul 29, 2024

Breaking Through

By Karuna Meda | Illustrations by Sol Cotti

Jefferson researchers inform evidence-based guidelines for transgender patients.

Lilly McBride was twenty-six years old when she came out as transgender, though she had known for years that something felt different. When she was younger, she observed the changes happening in her male body and longed for them to be more like her female peers. “It’s painful to think that for more than half my life, I was never me.”

Her journey of transitioning involved many components — building a supportive social network; seeking out counseling; and using fashion and makeup to express her identity outside of the gender binary. She also sought out gender-affirming hormone therapy to achieve desirable physical characteristics.

Throughout this experience, she became aware of the challenges that both transgender patients and health providers face in having open dialogue about care. She’s taken part in clinical trials, including here at Jefferson Health, as well as education efforts in her own community to further the understanding of gender-affirming care.

But Lilly makes the caveat that not all transgender people seek hormone therapy or gender-affirming surgery, and that routine health care is just as important. In a report from the Center for American Progress, nearly half of transgender people — and 68% of transgender people of color — described having experienced discrimination from a medical provider.

This dissuades many transgender people from going to the doctor, jeopardizing essential screenings and follow-ups. On the provider side, a lack of training means that many doctors, nurses and administrative staff don’t feel adequately prepared to provide culturally sensitive care for transgender patients.

At the heart of inclusive care is that an individual is truly seen — seen by their doctor, care team and the community.

- Dr. Yehia

Lilly McBride

Research into Improving Gender-Affirming Care

Several researchers at Thomas Jefferson University and Jefferson Health are working to bolster evidence-based approaches and provide education for patients and providers in two central areas of concern for the transgender community: HIV therapy and cancer care. The approaches used in these studies all fall under the umbrella of gender-affirming care.

Gender-affirming care, as defined by the World Health Organization, is a range of social, psychological, behavioral and medical services “designed to support and affirm an individual’s gender identity.” The World Professional Association for Transgender Health (WPATH) outlines well-established, evidence-based guidelines on who can access what form of gender-affirming care, and when they are eligible to receive it. The WPATH, along with every major medical and mental health organization in the U.S. — including the American Medical Association and the American Psychological Association — recognizes that gender-affirming care is medically necessary.

This care is embodied in Jefferson Pride Care — Haddonfield, a multidisciplinary LGBTQIA+ affirming practice and the first of its kind in South Jersey. It joins Jefferson Einstein Philadelphia Hospital’s Pride Care at Community Practice Center, which has been providing care for over a decade. Many patients who have sought care at these clinics identify as transgender, and the stories from patients and doctors alike reflect the impact of inclusive care. In a recent article on Jefferson Health’s Living Well blog, Dr. Baligh Yehia, president of Jefferson Health, explains that, “At the heart of inclusive care is that an individual is truly seen — seen by their doctor, care team and the community. Inclusivity is about feeling welcomed, valued and respected, no matter where you’re from or who you are. This is a core value of Jefferson: putting people first.”

Research has shown that gender-affirming care can improve well-being in transgender individuals. Last year, a multicenter U.S. study funded by the National Institutes of Health and published in the New England Journal of Medicine found that 315 transgender and non-binary individuals experienced significant improvement in gender dysphoria, and sustained improvements in depression and anxiety over two years after starting gender-affirming hormones. It was the largest study of its kind, with the longest follow-up, and it supported previous evidence from numerous studies in transgender individuals.

“If I could wave a magic wand and feel safe in my body, I would do it in a second. But it doesn’t work like that,” says Lilly.

The work of Jefferson researchers is critical in addressing knowledge gaps, because they define what gender-affirming care is, and provide clarity on the range of approaches it includes, and their benefits.

A Life-Threatening Choice

“I am considered an “elder” in the transgender community. There aren’t that many of us because so many perished during the AIDS epidemic,” says Lilly, who came out as transgender in 2010. According to the World Health Organization, transgender women are 49 times more likely to be living with HIV-1 than the general population, and have a higher prevalence than transgender men. This reflects factors like stigma, discrimination, negative healthcare encounters and limited access to health care.

Antiretroviral drugs help keep HIV-1 from developing into AIDS. However, transgender women living with HIV-1 infection often worry that antiretroviral drugs will interfere with their hormone therapy.

In one study, 57% of transgender women with HIV-1 reported this concern to their healthcare provider, with 40% citing it as a reason to not use antiretroviral drugs, hormone therapy, or both.

“It’s hard to pinpoint the exact origin of this belief,” says clinical pharmacologist Walter Kraft, MD. “But it means that some transgender women are skipping their HIV meds. Even one missed dose can drastically reduce the level of drug in the body needed to keep the virus in check.”

“There are so few studies that have examined this interaction specifically in transgender women,” says Edwin Lam, PharmD, who worked with Dr. Kraft to study this topic during his research fellowship. “This lack of robust data means we don’t have clear guidelines to offer to our transgender patients.”

To address this gap, Dr. Lam and Dr. Kraft embarked on a clinical trial to assess how the two types of drug interact. They assessed two antiretroviral drugs (doravirine and tenofovir disoproxil fumarate) with feminizing hormone therapies (17ẞ-estradiol and spironolactone), which had not yet been studied together in transgender women.

The goal of the Phase 1 trial was to study this interaction in healthy transgender women, so as not to put those living with HIV-1 at any risk for drug resistance. Recruiting volunteers was impeded by the COVID-19 pandemic, and the team had to try several outreach approaches – social media, targeted marketing campaigns and apps like Grindr. It was through these channels that Lilly learned about the trial and volunteered as a participant.

Her role as an activist in the Philadelphia LGBTQ+ community was critical in recruiting more volunteers for the study. “She gave us so many great suggestions for reaching the transgender community,” says Courtenay Fulmor, the research nurse coordinator for the study who was responsible for patient screening and education, "including cultural and community service events and support groups." But, even with these efforts, there was one major aspect of the study that gave potential volunteers pause.

“To participate, women had to agree to a drug wash-out,” says Kevin Lam, PharmD, another research fellow who continued the project after Dr. Edwin Lam (unrelated) took up a new position. “This means that volunteers had to stop whatever hormone therapy they were on so they could get a uniform dose of hormones while in the clinic, along with the antiretrovirals.”

“For someone to stop the medication that was helping them in their transition — it’s a lot to ask for,” says Lilly. “It was not a pleasant experience. I started to feel this incongruent connection between myself and my body. Masculine features started to reappear, which was very dysphoric and distressing.”

The trial managed to recruit eight healthy volunteers, including Lilly, which was adequate for a drug interaction study. By comparing the levels of each drug in each participant’s blood throughout the study, the researchers could see that there were no changes in the effectiveness of any of the drugs. Most importantly, they saw no clinically significant interaction between the antiretrovirals and feminizing hormones.“

This data gives transgender women the confidence to stay on their HIV medication,” says Dr. Kraft.

For Lilly, participating in the trial was all worth it. “No one should have to make the choice between two life-saving drugs.”

Training Cancer Care Doctors in Inclusive Care

Another area where education can have a life-changing impact on patient outcomes is cancer care. The combination of increased risk factors (like HIV, smoking and alcohol use), lack of access to health care and mistrust of providers contributes to poorer outcomes in LGBTQ+ cancer patients. In fact, one study showed that transgender people may be diagnosed at later stages, be less likely to receive treatment and have worse survival for several cancer types, compared to cisgender patients.

A critical step in improving outcomes is cancer screening. However, there are no guidelines specific to the LGBTQ+ population, which leads to uncertainty for both providers and community members. A 2022 study led by Nicole Simone, MD, the Margaret Q. Landenberger Professor and a researcher at the Sidney Kimmel Comprehensive Cancer Center, surveyed over 400 LGBTQ+ community members and found that over half of the respondents were not certain what cancer screenings should be done and at what age they should begin. Half of the respondents also reported that emotional distress prevented them from seeking cancer screening, citing fear of discrimination and lack of training among physicians and nurses. These concerns are not unfounded. In fact, a subsequent study in 2023 by Dr. Simone and colleagues surveyed 355 providers nationwide and found that only 28% reported previous LGBTQ-related training and 71% agreed their clinics would benefit from training.

“Better training and education have the potential to improve consensus among physicians about cancer screening for this population,” says Dr. Simone. “It would take out a lot of guesswork.”

AnaMaría López, MD, another cancer physician and researcher the Cancer Center, was part of a research team that recently created and tested the Together-Equitable-Accessible-Meaningful (TEAM) training program to educate cancer teams across the country to improve culturally competent care for sexual and gender minorities. Healthcare providers spent approximately a year participating with the TEAM training, learning about inclusive care and understanding the facilitators and barriers to implementing initiatives for equitable care. These initiatives ranged from creating inclusive signage in clinics to asking patients their preferred pronouns.

“It may seem like a simple question, but without asking our patients how they identify we can’t screen patients for the right things or provide them with appropriate care,” Dr. Lopez says.

Just last year Jefferson Health began collecting demographic information on patients’ sexual orientation and gender identity in its medical records. Dr. Lopez says it’s a first step to ensure transgender people are no longer invisible in research and care.

At the end of the TEAM training, the 28 participants had significantly improved clinical knowledge and behaviors around cancer care for sexual and gender minorities. However, the team is now creating a new tool to assess how meaningful the improvements are to patients. “It will need to be a mutual, ongoing education,” says Dr. Lopez.

Lilly agrees. “The transgender community needs doctors and researchers as allies. We’ve had to fight just to be seen and heard and accepted. We just want to be cared for.”

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