Largest ever survey of trans people in the United States reveals stark health and HIV realities

26 May 2017

Disturbing patterns of mistreatment, discrimination, violence and harassment, with knock-on impacts on health and HIV risk, have been revealed by the largest ever survey of transgender people living in the United States of America (USA).

Two faceless girls embracing on steps with rainbow flag stamped on hand.

Startling health and economic disparities between transgender people and the rest of the US population have been brought to light by the US Transgender Survey (USTS), an anonymous online study of more than 27,700 trans people.

HIV prevalence stood at 1.4% of respondents — nearly five times the rate in the US population as a whole (0.3%). A staggering one in five (19%) Black trans women who took part in the survey were living with HIV. American Indian (4.6%) and Latina (4.4%) women also reported higher rates. Of those living with HIV, 87% were on antiretroviral treatment compared to the US’s national treatment rate of 94%.

Mara Keisling, Executive Director of the National Center for Transgender Equality, the organisation that conducted the survey, said: “Despite achieving some significant policy advances and increased visibility over the past few years, transgender people continue to face enormous obstacles in almost every area of their lives…This survey demonstrates that there is a lot of work ahead to achieve simple parity and full equality for transgender people.”

The survey paints a troubling picture of the impact of stigma and discrimination on the health of many transgender people in America. A third (33%) of those questioned had experienced at least one negative health care situation in the past year which acted as a barrier to treatment. Common experiences were being refused treatment, being verbally harassed, physically or sexually assaulted, or having to teach the provider about transgender people in order to get appropriate care. Transgender people of colour experienced deeper and broader patterns of health discrimination than white respondents and the US population as a whole.

Respondents also reported substantial economic barriers to receiving health care such as financial constraints and lack of health insurance.

Experiences of harassment and violence, both of which compound HIV vulnerability, were reported at alarmingly high rates. Nearly half (47%) of respondents had been sexually assaulted at some point in their lives and 10% had been sexually assaulted in the past year. Around 13% of respondents who were ‘out’ or perceived as transgender while in school reported being sexually assaulted as students. More than half (54%) had experienced some form of intimate partner violence.
The survey’s results also demonstrate a clear association between HIV risk and economic instability, housing instability and poor education, with high levels of poverty, homelessness and sex work reported.

Nearly one-third (29%) of those taking part in the survey were living in poverty, with roughly the same proportion reporting experiencing homelessness at some point in their lives.

One in eight (12%) reported engaging in sex work for income at some point in their life, and 5% had done so in the past year. 32% of respondents who were living with HIV and 29% of undocumented residents had participated in sex work in the past year – substantially higher rates than among other respondents. Transgender women of colour reported higher rates of sex work in the past year, particularly Black transgender women 24% of whom had engaged in sex work for income in the past year.

An overwhelming proportion of those who had engaged in sex work – nearly nine out of ten (86%) – reported high rates of police harassment, abuse and mistreatment, including violence and sexual assault. More than half (57%) of all respondents said they would feel uncomfortable asking the police for help if they needed it. Respondents who were held in jail, prison, or juvenile detention in the past year faced high rates of physical and sexual assault by facility staff and other inmates.

The USTS, which was released in December 2016, serves as a follow-up to the US’s groundbreaking 2008–09 National Transgender Discrimination Survey (NTDS). Authors of the USTS hope it will provide researchers, policymakers, and advocates with a better understanding of the experiences of trans people over time. For those working in America’s HIV response, it provides important evidence to inform the implementation of effective HIV prevention, treatment and care programmes for this key population.

Current trials of new prevention technologies such as self-testing for HIV, treatment as prevention and pre-exposure prophylaxis (PrEP) have largely excluded transgender people, or have not included them in a meaningful way. A literature review focusing on the use of PrEP for trans people published by the Journal of the International AIDS Society in October 2016 urged those implementing PrEP progammes to “better consider and address trans women’s unique barriers and facilitators to uptake and adherence.”

The USTS’s authors hope their findings will provide this key insight. Sandy James, USTS’s lead author, said: “We hope that the survey’s breadth and in-depth examination of transgender life in the United States will serve as an important resource that prompts dialogue and leads to a greater understanding and acceptance of transgender people.”

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Written by Hester Phillips