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HIV-Positive Trans Women Worry About Side Effects of Taking Hormone Therapy and HIV Treatment Together

July 25, 2017

Attendees browse poster presentations at IAS 2017 in Paris, France

Attendees browse poster presentations at IAS 2017 in Paris, France (Credit: ©IAS/Steve Forrest/Workers' Photos)


Transgender women shoulder a disproportionate burden of the HIV epidemic. More than 20% of transgender women in the United States are estimated to have HIV, yet transgender people routinely face discrimination in health care settings, with 28% reporting harassment at a doctor's office.

Now, a new survey of transgender women in Los Angeles may point to health consequences among this marginalized population. According to the survey, which was sponsored by the National Institutes of Health (NIH) and the pharmaceutical company Gilead, many transgender women worry about the harmful side effects of taking hormone therapy and antiretroviral therapy (ART) at the same time, prompting some to stop treatment.

Worryingly, too few of these transgender women took their concerns to their doctors, instead navigating complex medication regimens on their own. The survey comprised 87 transgender women receiving services at a community-based AIDS organization. Their average age was 45 years old, 62% were Hispanic, 54% were HIV positive and 69% were taking hormone therapy. All the HIV positive people surveyed were on ART.

Although the majority of transwomen surveyed were taking hormone therapy, about 25% were doing so without a doctor's supervision. In addition, the transgender women with HIV were far more likely to use hormone therapy outside the health care system. Only 13% of HIV-negative transgender women reported using hormone therapy without supervision, compared with 34% of those with HIV.

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In past surveys, transgender people have reported an impossible catch-22 when it comes to seeking medical care. According to a 2011 survey, 19% have been refused care at a doctor's office -- stigma and discrimination that force many to make important medical decisions alone.

According to the recent Los Angeles survey, many transgender women with HIV worry about harmful drug interactions from taking ART and hormone therapy at the same time. This concern led 40% of those surveyed to stop taking medications as directed. Only 49% brought their concerns to a health care professional, while the rest navigated the problem outside the health care system.

Because transgender people are woefully underrepresented in clinical research, the scientific community knows very little about the potentially dangerous drug interactions of hormone therapy and ART. There is evidence that some antiretroviral drugs can have harmful interactions with female contraceptives (the pill), which contain similar drugs as hormone therapy, although far more research is needed on hormone therapy and ART specifically.

Transgender women have a high risk of HIV, and therefore play a critical role in ending the epidemic. Numerous studies have demonstrated that people who take ART consistently cannot transmit HIV to sexual partners. If transgender women were given the appropriate tools to take ART every day while simultaneously expressing their gender identity through hormone therapy, they could live healthy lives while also helping prevent the spread of the virus, researchers argue.

According to the NIH press release on the survey, study leader Jordan Lake, M.D., of the University of California Los Angeles David Geffen School of Medicine, noted that, although transgender women are "a critical population in HIV care, very little is known about how to optimize co-administration of ART and hormonal therapies in this population."

"This study suggests this void of information may mean some transgender women forgo life-sustaining HIV medications, identity-affirming hormone therapy or some combination of the two. By exploring the extent to which this is happening, we can find ways to better serve this population," Lake's comments in the press release continued.

Lake will continue this research into transgender women, hormone therapy and ART at the University of Texas health Science Center at Houston.

Sony Salzman is a freelance journalist reporting on health care and medicine, who has won awards in both narrative writing and radio journalism. Follow Salzman on Twitter: @sonysalz.

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