Trans and Gender Diverse People in HIV Data

By Teddy Cook, Co-Chair, (Peer Advocacy network for the Sexual Health of Trans Masculinities)

Information in this blog was originally presented at the Australia Federation of AIDS Organisations (AFAO) Members Meeting, 24-25 July 2018.


“There has probably never been a population both more heavily impacted and less discussed at scientific meetings than the transgender population around the world. – Dr Tonia Poteat, Conference on Retroviruses and Opportunistic Infection (CROI), 2016


Trans and gender diverse people experience multiple barriers to HIV prevention. Methodology prevents their appearance in research and surveillance systems, while the health workforce’s awareness of the needs of trans and gender diverse people is generally poor. Transphobia often magnifies this problem. Trans and gender diverse people are under represented in health promotion work. There are also the legal barriers that trans and gender diverse people can experience in affirming their gender.

There is a fast growing need to improve this predicament and gain a fuller picture. Globally, around 19.1 per cent of transgender women are living with HIV. There is limited empirical evidence of HIV experience among transgender men and no data about HIV experience for non-binary people. Fewer than 40 per cent of countries report that their national HIV/AIDS strategies address trans and gender diverse people.

A recent analysis of the Australian Collaboration for Coordinated Enhanced Sentinel Surveillance of Sexually Transmitted Infection and Blood-borne Viruses (ACCESS) finds that of 1,117 people identified as “transgender”, 327 (29 per cent) were women, 370 (33 per cent) were men and 420 (37 per cent) did not have their gender identity captured. Of these patients, 3.8 per cent were HIV positive. The HIV prevalence among trans women was 4.5 per cent, among trans men, 2.5 per cent, and among those ‘unspecified’, 4.6 per cent.

It is likely that this does not reflect the true number of trans and gender diverse people attending sexual health clinics due to poor recording of trans experience, including a lack of specific data relevant to non-binary people. It is also worth noting that sexual health clinics tend to attract people at higher risk of transmission, which means these estimates may not represent the general population of trans men and women. Further, two sexual health clinics with large caseloads of trans people were not included in this analysis.

Risk factors for HIV acquisition are varied. It has been shown that receptive vaginal sex can pose different level of risk for trans women, depending on who they are having sex with. Stigma, discrimination, and social exclusion from employment and education also increase the risk of HIV. Although not a direct risk factor, trans women are more likely to report sex work than cisgender women and more likely report injecting drug use than cisgender gay and bisexual men. An analysis of the Sydney Gay Community Periodic Survey found trans male participants reported HIV risk similar to cisgender men.

Research into trans women’s experiences in Australian men’s prisons found incarceration increases the risk of HIV including physical and sexual violence. It must also be noted that a substantial population of trans men are men who have sex with men but also that many trans women exclusively have sex with other women (trans and cis) meaning risk cannot be seen as universal across the trans and gender diverse community.

Action is required across the HIV response to provide effective HIV prevention for trans and gender diverse people. This requires appropriate gender indicators in data collection, including amended HIV notifications forms, recognition of trans and gender diverse people as a priority population in the National HIV Strategy and the development of clinical guidelines and training for inclusive care. Trans and gender diverse people must also be meaningfully included in decisions about the HIV response.

The shifting landscape of the HIV sector presents opportunities to revitalise the response, to better include trans and gender diverse people. This process may provide a model for parallel work in other Australian jurisdictions or among other priority populations.