The Oakland-based Transgender Law Center recently released the first report of findings from its Positively Trans survey, which aims to learn more about the lives and experiences of transgender people living with HIV.
"Through our research, we are making it clear that transgender people, and particularly transgender women of color, face unique challenges in living with HIV, and we must be at the table when policy and funding decisions are made," said Transgender Law Center senior strategist Cecilia Chung, who is HIV-positive and developed the survey.
Working with a national advisory board of trans community leaders, TLC, with support from the Elton John AIDS Foundation, launched the survey in response to the structural inequities that drive the high rate of HIV/AIDS and poor health outcomes among trans people. The first report was released last month.
Transgender women are known to have among the highest rates of HIV infection worldwide. One meta-analysis found that 22 percent of trans women in the U.S. are HIV-positive, while a global meta-analysis found that 19 percent of trans women were living with HIV. Very little is known about HIV rates among trans men.
To learn more about health and legal priorities and barriers for transgender people living with HIV, a needs-assessment survey was conducted online in both English and Spanish in the summer of 2015. Transgender participants �" defined as people whose sex assigned at birth was different from their current gender identity �" were recruited through existing networks and clinics serving trans people living with HIV.
A total of 157 respondents completed the survey, coming from 35 states and Puerto Rico. Most (84 percent) were trans women or on the trans feminine spectrum, while 12 percent were trans masculine. Most were in the 26 to 55 age range, but 9 percent were age 25 or younger and 11 percent were older than 56. They had identified as transgender or gender non-conforming for a median of five years longer than they had been living with HIV (17 versus 12 years), indicating that they generally became HIV-infected while identifying as trans.
Approximately a third each were African-American, Latina, and white, and one in five did the survey in Spanish. About 40 percent lived in the South, followed by the west (29 percent), northeast (14 percent), and Midwest (13 percent); 70 percent said they lived in urban areas.
The first survey report shows that trans people living with HIV face numerous challenges. Although nearly two-thirds percent of survey respondents had at least some college education, a majority were low-income, with 65 percent earning less than $23,000 annually. More than 40 percent had a history of incarceration.
Asked about their most pressing health concerns, respondents prioritized gender-affirming and non-discriminatory health care, hormone therapy and its side effects, and mental health care �" all considered more urgent than HIV treatment. In particular, many respondents were concerned about how hormone therapy might interact with antiretroviral drugs.
Two out of five respondents reported going six months or more without medical care, often due to cost or fear of mistreatment by providers. A fifth said they did not have health insurance coverage and a third thought they had been denied care due to being transgender or gender non-conforming.
Survey respondents said that HIV-related discrimination was their top legal priority (69 percent), with discrimination around employment, public accommodations, identification documents, and housing coming close behind (ranging from 54 to 65 percent).
In the face of systemic threats and barriers, "the impact of HIV on the transgender community cannot simply be addressed by programs that work to affect individual behaviors," according to the report. "[W]e must address the systemic barriers our community members face �" and the complex interactions of these systems �" to reduce HIV risk and increase access to care and other resources for trans people living with HIV."
Going beyond facts and figures, the report offers recommendations for initiatives to promote transgender health and legal rights, including rights-based advocacy training, development of support systems for those who face discrimination, economic initiatives to help overcome barriers to care, and provider education about gender-affirming care, and the mental health needs of transgender people with HIV.
As a companion project to the survey, TLC has started offering digital storytelling workshops for transgender people affected by or living with HIV. The full report and videos are available online at http://www.transgenderlawcenter.org/programs/positively-trans. Future reports from the survey will cover stigma, interaction with law enforcement, and substance use.
"Through the survey, the collective voice of trans people living HIV assert their priorities in health care and their policy priorities," Chung told the Bay Area Reporter . "It is a perfect opportunity to invite them to the table to offer their response to the epidemic. The data will hopefully change minds while the digital stories will help change hearts. I hope our providers and funders are paying attention."