Transforming Lives

With so much talk about aging with HIV, how does the conversation change when gender identity is added to the mix?

Unfortunately, the data around life expectancy and transgender women are shaky at best—and there is painfully little information regarding any aspect of transgender men’s experience with HIV, much less how they age with HIV. But here are some things we do know: Transwomen are 49 times more likely to become HIV-positive than the general population, have high rates of being positive and not knowing it, and are less likely to be connected to consistent HIV care.

Granted, the same factors that make transwomen more vulnerable to HIV transmission are also the same barriers that keep them out of the health care system, and threaten their lives overall.

“Higher rates of violence, poverty, homelessness, discrimination, and incarceration are structural barriers that many transwomen face on a daily basis,” said Cecilia Chung, senior strategist at the Transgender Law Center in San Francisco.

“Even with a rise in trans visibility, stigma, fear, and isolation are also factors, especially among communities of color,” she added. “I still see transwomen afraid to walk into HIV clinics because they don’t want anyone else to know their business.”

Realistically, these structural fissures cannot be fixed overnight (especially when LGBT/HIV organizations don’t always prioritize trans issues). But while advocates continue to work on the grassroots and policy levels, there are actions medical providers can take right now to help extend the lives of transgender women living with HIV.

Understand HIV-positive transwomen’s priorities

Too often, medical professionals believe that HIV treatment is most important to clients living with HIV, when that isn’t always the case. The Transgender Law Center’s 2016 Positively Trans survey, which collected data specifically from transgender individuals living with HIV across the U.S., found that HIV treatment was fifth on respondents’ lists of priorities.

“Gender affirming health care, personal care, mental health, and hormone therapy were more important than antiretrovirals,” stressed Chung, who worked on the survey and is also a transwoman living with HIV.

This is why physicians need to listen to their patients more often, stressed Kate Franza, assistant director of behavioral health and community programs for the Asian & Pacific Islander Wellness Center in San Francisco.

“We must ask them more often what they believe is their greatest need in that moment, instead of having our own ideas of what they need,” she said. “This is about creating a partnership and respecting people’s life choices.”

Link hormone therapy to HIV treatment

Given that hormone replacement therapy (HRT) is important, providers should be able to provide HRT and HIV care simultaneously, said Magda Houlberg, MD, chief clinical officer at Howard Brown Health in Chicago, where this is mandatory practice.

"Getting to one appointment is hard enough, but then to say, ‘You have to come back to get hormone treatment with another clinician’ isn’t fair. Providers shouldn’t get to opt out; it should be standard," Dr. Houlberg stressed.

Most important, Franza points out that HIV treatment shouldn’t be a prerequisite to get HRT either.

"How can you think about treatment if you don’t feel good in your body or comfortable in your clothes? If a client wants to talk about hormones first and not treatment, we shouldn’t refuse them," she said.

Don’t think ’cause you’re an LGBT clinic, you’re culturally competent

Thankfully, more and more LGBT clinics across the country have growing trans-specific programs with support groups and drop-in services that offer food vouchers, health care, hot meals, and clothing. But just like traditional medical settings, these clinics also need to work on cultural competency.

"I’ve gone to my HIV clinic in Atlanta and the front desk staff has misgendered me or referred to me as the [male] name on my insurance card," said Jennifer Barnes, a woman of trans experience who was diagnosed with HIV in 2011. Barnes often wonders: "How hard is it to read my chart and see the name I go by?"

Sadly, these types of experiences, from the front desk to the exam room—even in LGBT- and HIV-specific clinical settings—are not new or rare. "So many transwomen come to these clinics having already experienced a lifetime of medical trauma, and this can retraumatize them, break trust, and push them further out of care," Franza said.

Other ways for clinics to address this disconnect are implementing more education on trans issues for staff, cultivating trans leadership, and hiring more trans employees in all areas of service, including clinical settings. Yet, Houlberg points out that diversity among medical staff is hard to come by.

"Medical providers need to reflect the population, and right now most medical schools just don’t," she admitted. "There just isn’t enough diversity in these settings, and it’s a real problem."

In the end, Franza points to her robust client base of positive transwomen over 60 as proof that it’s possible for transgender women to live a long, prosperous life. But medical providers have a part to play in that—and it’s pretty basic.

"It’s important to be kind and open without judgment," said Franza. "That is truly the best way to serve our community."