This Isn't Just Research, It's Our Lives: Centering Trans Stories in HIV Treatment and Prevention
I have told the story of my body and its history to countless medical providers since coming out as trans in 2011. Realizing that my providers knew very little about my health needs after coming out, I began developing and facilitating trans health trainings in my community. I learned the latest statistics, frameworks, and health disparities by sleeping, eating, and breathing trans research studies. As a trans person, I am fueled to understand these studies so I can take control of my health in a world where more than 50% of transgender people have to teach their medical providers how to care for their health . As a trainer and educator, I am required to keep informed on the most current data regarding transgender people and our health to teach providers the most effective ways to care for trans patients.
But I have been growing increasingly frustrated with the lack of institutional foresight on prioritizing research specific to transgender people and our experiences with HIV. Transgender people are living with or at significantly higher risk of contracting HIV than the general population. But research on trans experiences of HIV is only just gaining momentum in large research institutions. Predominant research institutions rely on large sample sizes to conduct research on distinct populations. Trans people are not seen as a large population so are not studied, leaving small community non-profits and academic departments to lead the charge. These efforts are dependent on funding opportunities, which for HIV research are delegated to communities that have the greatest need as demonstrated by data. Trans research finds itself in a dilemma: if we don't have the funding to conduct the studies then we can't collect data to demonstrate the need for the funding. It's a vicious cycle and seemingly impossible to break.
However, the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) have taken a critical first step by recognizing trans people as a population that requires focused research efforts. Eliseo Pérez-Stable, director of the National Institute on Minority Health & Health Disparities at the NIH, recently designated sexual and gender minorities (SGMs) as a health disparity population for research efforts, which has the potential to expand more research efforts into the trans community.
Meanwhile, the CDC recently released an issue brief detailing guidance on HIV prevention and care for transgender people in the US . As part of their High-Impact Prevention approach, the CDC outlined a series of steps they will be taking to improve access to HIV care and prevention for transgender people as part of the National HIV/AIDS Strategy (NHAS) for 2015-2020. The NHAS identified transgender women as a high-risk population but failed to include concrete indicators for addressing HIV as it affects trans people, according to the National Center for Transgender Equality. The CDC's recent guidance states that they will be working with partners to develop new prevention programs and adapt existing ones to better assess the impact of HIV on transgender people.
The CDC guidance includes advancing HIV prevention research to adapt prevention programs for trans populations. Piloting trans-focused research is a necessary step since existing HIV research studies do not sufficiently address the HIV concerns for the trans community. Current large-scale HIV research studies of HIV prevalence or exploration of new prevention tools, such as PrEP, tend to lump trans women in with men who have sex with men (MSM) and leave trans men and non-binary people hiding in plain sight. Researchers assume that trans women face similar risk as cisgender men who have sex with men and that trans men face similar risk as cisgender women. These assumptions oversimplify the realities of trans health. Trans people do not always have access to the same resources that the general population may have to preventive services or treatment. Trans people partner with and have sex with partners of all different gender identities; and some trans people may face HIV risk from injecting drugs or street hormones rather than their sexual behaviors.
I have found that these unique concerns become a central part of the HIV conversation when trans people are treated as research experts on our community and not just as research subjects. I'm currently working with trans men who have sex with men and some of their larger concerns come from competing priorities unique to transgender people, such as the desire to focus on transition-related care before even thinking about HIV prevention or treatment. Researchers at The Center of Excellence for Transgender Health are currently exploring how gender affirmation (the desire to have one's gender identity socially, legally, and medically recognized) affects HIV risk behavior for transgender women of color. The Transgender Law Center's Positively Trans (T+) project just completed a national needs assessment of trans people living with HIV, specifically looking at the impact that trans-related and HIV stigma have on HIV treatment adherence. These research efforts put trans researchers at the helm and ask critical questions that are not considered crucial in mainstream HIV studies but are absolutely central to how transgender people experience access or barriers to HIV treatment and prevention.
Increased and more focused research on trans-specific HIV issues has immense implications for improving the health of trans people. More accurate data can lead to the development of more effective prevention programs, innovative trans-specific approaches to antiretroviral therapy, and demonstrate evolving HIV needs in the trans community going forward.
Our experiences of stigma and discrimination, the stories we tell about the ways we inhabit this world as trans people are real and always have been. Research efforts serve as documentation for what is already happening in our lives and our communities. Conducting research has the power to shift the culture, using data to tell stories and validate the challenges we face as a community. In the coming months, I urge the CDC and the NIH to remember to center trans people in these HIV treatment and prevention research efforts by hiring trans researchers, building into existing trans HIV research, and providing trans community leaders with a seat at the decision-making table.
Because to us, this isn't just research. These are our lives. Let's keep the stories going.
Emmett Patterson is a program associate and trainer at AIDS United.