On July 30, the U.S. Women and PrEP Working Group held an informational webinar on PrEP and transgender women. The webinar featured panelists within both medical and transgender communities. Among the topics discussed were possible reasons that PrEP is not widely used and potential ways to increase its use.
Manju Chatani-Gada, co-coordinator of the U.S. Women and PrEP Working Group, said the group "came together right when the FDA was about to approve Truvada for PrEP. … There was a real need for a national response from women to ensure that PrEP research and rollout addressed women's concerns as well."
Zil Goldstein, a family nurse practitioner at Beth Israel Medical Center and the clinical director of Persist Health Project, described what PrEP does. Goldstein said, "Basically, when you take Truvada, which is a medication that we can use to treat HIV, when you're HIV-negative, it can dramatically reduce the risk of getting HIV."
Yet, many transgender women who could use PrEP are not using it. A statement made by Prudence Mendiolaa peer health navigator and research assistant at Friend's Research Instituteimplied that stereotypes about PrEP may be one reason it isn't widely used. "When I had first decided to use it, I got some reactions that were pretty negative," she said. "[Such as] anyone who's using PrEP is just using it as an excuse to be riskier." In reality, Mendiola said, PrEP is simply another tool she uses to stay safe.
But there is another reason PrEP isn't being used. Goldstein said, "We, as a [transgender] community, do not trust health-care providers." A Lambda Legal 2012 study found that more than 65 percent of transgender individuals reported that their health-care providers were unaware of their health-care needs and almost 8 percent reported that their providers were physically violent.
And there are other issues that strain the relationship between providers and transgender individuals. Cecilia Gentili, the trans health coordinator for the APICHA Community Health Center, said, "Agencies and medical providers have usually the tendency to associate transgender folk … with HIV and nothing else. … I had to go the emergency room a couple of times and, instead of being evaluated for whatever my problem was at the time, I was given the HIV talk."
Goldstein said, "In the context of PrEP, we're looking at both being transgender … and then we're looking at what is still, in lots of places, seen as a fringe prevention method." Mendiola added, "[Doctors] are liable for what they do and … they're just unwilling to provide something that they don't have all the information on."
The panelists also felt it is important that the transgender community take part in clinical trials of PrEP and that these trials address the many other needs of the community. Gentili noted problems such as entrance into the workforce, access to medical care, and violence and discrimination as areas of particular concern.
Bob Bucklew, chair of the Research Priorities Working Group at Community Partners, said the community is now included in every step of the research process. Community Partners provides recommendations to the National Institutes of Health Division of AIDS to ensure that transgender individuals are involved. Among their recommendations are: involving transgender people in all protocols, providing responsiveness training and resources to community advisory boards, ensuring uniform data collection that allows a full description of gender, and supporting research on transgender unique issues.
The Division of AIDS Cross-Network Transgender Working Group is tasked with addressing these recommendations. Rona Siskind, a member of the Cross-Network Transgender Working Group and liaIson to Community Partners, said, "To date, the working group has developed and advocated for use of a common template for data collection using a two-step approach which separates gender identity from sex at birth." The template offers a number of options for both sex and gender and also allows people to write in their own terms.
Two studies currently in development have purposefully included transgender women. The study HPTN 081/HVTN 703 looks at the safety and efficacy of a vaccine. It includes about 3,900 volunteers, including transgender men, transgender women, men who have sex with men, and at-risk women. The study HPTN 083 compares Capotegravir with daily oral Truvada. It is enrolling about 4500 individuals including transgender women, cisgender men, and men who have sex with men. In addItion, about 12 percent of participants in the study MTN 017 identified as transgender women. The study results are expected in early 2016.