Riding the Waves in Uncharted Waters: Excitement and Hope for Transmasculine People in HIV Research
I cried listening to Dr. Tonia Poteat’s CROI 2016 plenary presentation in February, HIV in Transgender Populations: Charted and Uncharted Waters. A few times, actually. I could barely believe—after being left out for so long—that transgender men were finally being recognized and highlighted as an important population for scientists to include in future HIV research.
I began a passionate quest to advocate for the inclusion of trans men in HIV prevention studies exactly one year ago at last year’s CROI (one of the biggest annual HIV research conferences in the U.S.). There I learned that trans men who have sex with men (MSM) had been excluded from every clinical efficacy trial of PrEP (which is still true to date). Since that time, I have made it my mission to speak up for the inclusion of underrepresented populations in HIV research, and to do my part to overhaul the systems that have caused this, and other, scientific injustices to occur.
This year at CROI, during a plenary session to a packed auditorium, Dr. Poteat made groundbreaking strides by devoting a portion of her presentation to discuss trans men who have sex with men (MSM). She highlighted the importance of including this minority segment of the MSM population in HIV research.
Then, for five precious seconds, Dr. Poteat stood in silence and compelled every researcher, every scientist, every doctor, every journalist—every person in the room—to face the image of Lou Sullivan, a gay trans man and activist who died of AIDS-related complications in 1991. By quoting Mr. Sullivan and allowing him to deliver a message on behalf of the trans MSM community directly, she made time for the audience to consider the impact of unexamined, misinformed beliefs and stereotypes about gender and sex.
“I took a certain pleasure in informing the gender clinic that even though their program told me that I could not live like a gay man, it looks as if I’m going to die like one.” –Lou Sullivan, gay trans activist, 1951 – 1991
I’m amazed how much our community has accomplished in pursuit of Lou Sullivan’s dream—for the recognition and inclusion of transmasculine people in the global HIV conversation in just one year. It gives me hope that transmasculine people might one day be recognized by doctors and by the HIV community as real people, fully deserving of dignity, love, and evidence-based healthcare.
We are making exciting progress on this front, and moving from conversation to action. This past year, an antibody-mediated HIV prevention trial called The AMP Study became the first study of its kind to include trans men and people with non-binary genders.
Despite this progress, Dr. Poteat made clear we still have much to learn and do. When discussing HIV risk among transgender people, she noted, “I’ll begin with transgender men because that’s actually where we have the least amount of data.” She then summarized the entire topic in less than a minute of speech—not because HIV among trans MSM isn’t a serious concern, but because trans MSM simply aren’t being included in studies or appropriately characterized in data collections.
I followed up with Dr. Poteat to ask what, if anything, she might have added to her presentation about trans MSM if she’d had more time to speak.
“All the questions I named that are unanswered are unanswered for all trans people,” Poteat shared, emphasizing that there is still much we need to learn about trans women and HIV but that the existing, better-characterized HIV crisis among transgender women does not justify the erasure of another potential HIV crisis among transgender MSM.
Data collection procedures, and the definitions used by state health departments to categorize people’s risk, are part of the problem, said Poteat. “Sexual orientation and gender are helpful markers,” Poteat said, “but they don’t tell us what we need to know about a person’s real health concerns.”
As one example, a common assumption is that lesbians have little or no risk of contracting HIV. There’s a world of difference, however, in HIV risk for a lesbian couple when one or both women are transgender, compared to a lesbian couple in which both women are cisgender. In this case, and others, asking a person’s gender identity (woman) or sexual orientation (lesbian) may not give all the information needed to accurately assess HIV risk.
Another problem is the binary assumptions about human bodies that guide HIV research (which warrants another discussion of its own). Briefly though, we need to recognize that if we’re basing risk on the body parts a person has and uses for sex—we’ve got to get it right.
Trans people may or may not have a penis or vagina. And we can’t assume that a person has only one or the other—they might have both; they might use both or neither during sex; or they might have neither. We also can’t ignore the fact that many people are born with genital configurations that don’t conform to cis male or cis female norms. According to the Intersex Society of North America, one out of every hundred babies is born with bodies “that differ from standard male or female.”
This shows us that data collection methods must do a better job of accurately reflecting the reality that human bodies come in all different forms, and that HIV risk may be better tethered to behavior over body. We’re not going to be able to answer questions about transgender and other gender–expansive people and HIV if we aren’t asking the right questions to begin with.
“We don’t even have snapshots of basic behavioral information,” said Poteat. “I think we really need that.”
As a gay transmasculine person, there’s a lot I’d like to know about my sexual health, risk for HIV, and PrEP that future research still needs to answer. In the meantime, I’m excited that we’re finally part of the conversation—and I’ll do my part to continue adding to it.
Brandyn Gallagher, Executive Director of Outshine NW, is a Seattle-based activist and community servant who has devoted his life to redistributing happiness by raising awareness about HIV, stigma, social justice, and the struggles of queer and trans people in pursuit of equitable healthcare access.