Black transgender women have very high rates of HIV in the United States, but due to discrimination, poverty, and violence, they face many challenges receiving health care services. As more resources for HIV vaccine and cure research have been promised through the newly announced federal "Ending the HIV Epidemic" plan, increasing participation of transgender individuals in vaccine research will be a high priority. The HIV Vaccine Trials Network (HVTN) recently reported an increase in research engagement from black and Latinx participants in recent years. Despite this overall increase of people of color, black transgender women are still disproportionately missing from HIV vaccine trials, according to HVTN researchers.
"For us who focus on HIV prevention research, it is paramount that we go where the epidemic is in this country," said Michele Andrasik, Ph.D., M.S., M.A., Ed.M., director of social and behavioral sciences and community engagement at HVTN. "For our next efficacy trial, we are proactively searching for sites to build capacity in the places where we know the epidemic is most impacting people, and that's in the South, where it disproportionately impacts black and brown folks."
Andrasik's 2013 study, published in Prevention Science, conducted focus groups in four cities (Atlanta, Boston, Philadelphia, and San Francisco) with transgender women to explore barriers and ways to facilitate participation in HIV vaccine research trials. The study found that creating cultural competency training for research staff, creating trans-friendly environments, having protocols that focus on transgender-specific issues, and better data collection and tracking of transgender individuals would help facilitate better enrollment and engagement of transgender women in HIV vaccine trials.
One of the findings in the study was that transgender women are often talked about as "men who have sex with men (MSM)" in Centers for Disease Control and Prevention (CDC) data, community-based organizations (CBOs), and health care settings, which means that they don't often feel seen or welcome. When discussing previous experience with research projects happening in Atlanta, one study participant explained, "It's all MSMs, and most [transgender] people don't consider themselves men havingsex with men. And I heard of one that was for women, but is it for the trans [women]?"
For these kinds of experiences of being lumped in with "MSM" in public health epidemiological data and having to educate providers and researchers, many transgender women who might otherwise be interested in participating in research may not choose to participate.
"It's very difficult to go to a health care provider, especially [one] who is not centered around trans health -- and we have to sit and educate and dispel myths about our community before we can talk about the reason why we're there, which can be life-threatening," explained Carmarion D. Anderson, executive director of Black Transwomen, Inc. in Dallas.
This leads to a deep-seated distrust from community members.
"The mistrust is killing my sisters -- and that is unacceptable," Anderson said.
"As researchers and as health care professionals, we need to look at where the disparities are and how we can position ourselves in those spaces to address not only the larger HIV epidemic but disparities within the epidemic," Andrasik said.
A recent meta-analysis from the CDC showed that about 14% of transgender women in the U.S. are living with HIV, which is lower than previous estimates. However, the study found that racial disparities in HIV rates among the community are high, with 44% of black and 26% of Latina trans women living with HIV, compared to 7% of white trans women.
Andrasik argues that researchers need to think not just about the bottom line of enrollment and clinical research endpoints, but how the lives of the participants outside of the research trial matter.
"The people who are at highest risk for HIV who are in our efficacy trials," Andrasik said, "are the folks who are experiencing more marginalization -- because their very experience of marginalization is what puts them at greatest risk. So they may have more challenges and more life circumstances that prevent them from participating. It's important for us to know that and to be aware of what those are to effectively address those, to ensure if people want to be a part of the research [they can be]."
"We now have to combat a society that is against us on many different levels," added Anderson. "And now we are being asked to pay close attention to a certain area of our health, and all we're saying is that we need x,y, and z. We need housing. We need food. We need proper transportation. We need policy."
But Andrasik also believes that transgender women can and do participate in trials, and the systemic barriers should not be a reason to avoid proactive measures to include them.
"Many people do want to be a part of the research for altruistic reasons," she said. "They see how it impacts their community, and they want to be part of the solution, so our goal is make sure they can be part of the solution without creating any undue stress on their lives."
Community-based organizations such as those run by leaders like Anderson are vital to the research, Andrasik said. CBOs and their constituents often can help identify the research question, support the methodology process, collect and analyze data, and write up results in articles.
"It's incredibly important when you have the results not to just publish them in a peer-reviewed scientific journal or present them at scientific conferences," she offered. "But one of [the] things we do is -- in partnership with our community colleagues -- we identify other avenues of dissemination of information such as CBO newsletters, at town halls or health fairs. Not only understandable at a lay person's level but also interesting and engaging. I think there's no way we can do that without our community partners," she said.
Andrasik sees other benefits for the trans community and other marginalized communities who participate in clinical research trials.
"First of all, research educates the local community," she said. "All of the community engagement efforts that we do focus on educating the community. Not only we are doing [this] in vaccine research but HIV prevention, period. People [who] are actual participants in this research study get top-of-the-line medical care and medical services. And it links not only to education, but resources."