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Positively Trans Survey Looks at Lives of Transgender People Living with HIV


The Transgender Law Center (TLC) released in March 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.TLC, working with a national advisory board of trans community leaders and 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.

"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 TLC senior strategist Cecilia Chung, who developed the survey.

Transgender women are known to have among the highest rates of HIV infection worldwide. One meta-analysis found that 22% of trans women in the U.S. are HIV-positive, while a global meta-analysis found that 19% 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 assigned sex at birth was different from their current gender identity -- were recruited through existing networks and clinics serving trans people with HIV. A total of 157 respondents completed the survey, coming from 35 states and Puerto Rico.

Survey Findings

  • Most participants (84%) were trans women or on the transfeminine spectrum, while 12% were transmasculine.
  • Most were in the 26 to 55 age range, though 9% were age 25 or younger and 11% were older than 56 years.
  • Participants had identified as transgender or gender non-conforming for a median of 5 years longer than they had been living with HIV (17 vs 12 years), indicating that they generally became HIV-infected while identifying as trans.
  • Approximately one-third each were African-American, Latina, and white (26%, 33%, and 32%, respectively; 20% did the survey in Spanish.
  • 42% lived in the south, followed by the west (29%), northeast (14%), and Midwest (13%); 70% lived in urban areas, 14% suburban, and 16% rural.
  • Although nearly two-thirds of survey respondents had at least some college education, a majority were low-income, with 65% making less than $23,000 annually and 43 percent making less than $12,000.
  • 41% had a history of incarceration.
  • 41% respondents reported going 6 months or more without medical care since their HIV diagnosis.
  • 20% said they did not have health insurance coverage.

Going without medical care was often due to cost or fear of discrimination or mistreatment by providers. About a third of respondents thought they had been denied care due to being transgender or gender non-conforming, while 20% said they were denied because they had HIV.

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.

HIV-related discrimination was their top legal priority (69%), followed by employment discrimination (65%), discrimination in public accommodations (59%), issues with identification documents (59%), and housing discrimination (54%).

The report offers 5 recommendations for initiatives to overcome barriers to care and access to legal rights for transgender people living with HIV:

  • Legal and rights-based advocacy training programs designed specifically by and for transgender people living with HIV;
  • Support systems for transgender people living with HIV who have experienced discrimination, and for those who anticipate discrimination, to be able to access care and services without fear of mistreatment;
  • Identification and development of economic initiatives to relieve the financial barriers and stresses that limit access to care, for all transgender people living with HIV with particular attention to the needs of transgender people of color;
  • Focused anti-discrimination interventions and training in gender-affirming care in healthcare facilities, combined with ongoing accountability processes to correct discriminatory actions;
  • Healthcare and service provider education and support to address the mental health needs, including the effects of trauma, of transgender people living with HIV.

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," the report says. "[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."

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

Future reports from the survey will look at relationships between health outcomes, stigma, experiences of violence, viral load suppression, immigration, and participation in social change activism.

"Though the survey, the collective voice of trans people living HIV assert their priorities in health care and their policy priorities," said Chung. "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."



Transgender Law Center. Positively Trans: Initial report of a national needs assessment of transgender and gender non-conforming people living with HIV. March 24, 2016.