At the bottom of page 36 of the 2011 Annual Surveillance Report on HIV and STIs there's a footnote. By the end of 2010, 30,486 people had been diagnosed with HIV in Australia. Most - 27,701 (over 90%) – were men, with another 2,459 women. The footnote explains why these figures don't add up: they include 250 diagnoses for which no sex was reported, and 76 people whose sex was reported as transgender. This article is about that footnote, and the people it does or does not represent.
An article about transgender women and HIV in Australia risks becoming an article about emptiness, because very little has been written about HIV and transgender women – or transgender people in general – in this country. Transgender academic Roberta Perkins completed a national needs assessment of transgender people in 1994. Funded by the Commonwealth Department of Health and auspiced by the Australian Federation of AIDS Organisations, this was a major study of transgender health with 146 participants from around Australia, which is no small achievement. But most of its recommendations were ignored, and there has been no comparable research since. The 2007 Tranznation report surveyed 253 transgender men and women from around Australia and New Zealand, but did not collect data about HIV or sexual health.
The paucity of research is disappointing, as transgender people are at increased risk of acquiring HIV. Some of the statistics from around the world about HIV prevalence among transgender people – which usually relate to transgender women – are frankly alarming. In the US, one study estimated HIV prevalence among transgender women at 27.7 per cent. In other countries, particularly in the developing world, it is even higher. These high levels of HIV are usually attributed to the extreme social and economic marginalisation of transgender women, who have high levels of engagement in sex work – often the only work available to them. It seems unlikely that prevalence would be as high among transgender women in Australia, simply because levels of HIV in Australia as a whole are comparatively low – only a fifth of those in the United States, for example. Yet it is impossible to be certain, because there is little research and what data is available is of poor quality.
So what can we say for certain, about transgender women and HIV in Australia? In short, the answer is ‘very little’. The footnote in the Kirby Institute’s 2011 Surveillance Report mentions 76 diagnoses of HIV where the sex of the patient was listed as ‘transgender’ have been made in Australia. This figure is almost certainly incomplete, for a number of reasons. First, it is not clear whether these 76 people are men or women. The notification forms that doctors complete when they make a diagnosis of HIV do include ‘transgender’ as an option, which makes them quite progressive in comparison to most forms, but they don’t differentiate between transgender men and transgender women. This is because the subtleties of the distinctions between ‘male’, ‘transgender woman’, ‘transgender man’ and ‘female’ - with their corresponding variations in bodies, stages of transition and identity – are too complicated for a simple notification form. However, it’s likely that most – possibly all - were transgender women. Available studies of HIV among transgender populations from around the world indicate much higher levels of prevalence among trans women than among trans men. This also makes sense in cultural terms, as transgender women may have a background in the gay community, whereas transgender men often have a background in the lesbian community. Transgender women are also more likely to engage in sex work. Together, these two factors make for a higher level of HIV risk among trans women.
The second limitation of the surveillance data is that transgender status has been included on notification forms only since the early 1990s. It seems that some cases were recorded before this, but not all; one study, conducted in 1990, of 77 transgender women in Sydney found that 15 had HIV. The 2010 Surveillance Report records 23 deaths among transgender people;  those that died are likely to have been diagnosed earlier. This figure, incidentally, translates to 0.3 per cent of AIDS deaths in Australia.
More importantly, HIV surveillance forms are completed by doctors rather than patients. Of course doctors talk to their patients, and rely on the information they are given. But they don’t always ask, ‘are you male or female?’, particularly when the answer seems obvious. Yet the correct answer is not always obvious and with high levels of discrimination in health services, transgender people may choose not to disclose.
For these reasons, it is not possible to ascertain the incidence of HIV among trans women with any certainty. Prevalence is even more difficult, because the size of the transgender population is basically unknown. Estimates of the prevalence of transsexualism vary enormously, largely because of the very different criteria used to define a ‘transsexual’, and there have been no real attempts to count the transgender population in Australia.
Those studies that do exist often focus on a particular service or location, such as the number of transgender people attending a particular service. For instance, in 2007 the Sydney Sexual Health Centre (SSHC) audited its case files to find transgender people who had attended the service over a 16 year period. It found just 40 transgender people (36 women and 4 men) had attended the service, out of over 70,000 clients seen during the period. The researchers acknowledged that not all transgender clients would have been identified in case notes, and not all would have disclosed their transgender status, but the actual number would still have been quite small.
Nonetheless, the researchers were able to make some interesting observations about their transgender clients. They called the transgender group ‘dichotomous’, because fully half of the transgender women reported having no sexual contact in the previous twelve months, whereas the other half had disproportionately high rates of injecting drug use, high numbers of sexual partners, and high rates of sex work. Forty four per cent of the transgender women had done sex work at some point, and 28 per cent were working when they visited the service. This proportion is almost identical to that reported by Perkins in 1994. Perkins called sex work ‘a fact of life’ for many transgender women, who suffer extreme social and economic marginalisation. She reported that transgender sex workers are more likely to rely on street-based work, less likely to use condoms consistently, and more likely to suffer sexual or other assaults.
It is this group of transgender sex workers who concern HIV educators. Four of the women in the Sydney Sexual Health Centre study were HIV-positive, though there was no record of how they acquired HIV. In fact, this information is not recorded in epidemiological reports. The mode of transmission in cases of HIV among transgender people is usually listed as ‘undetermined’, because of the difficulties of determining whether sex was 'male-to-male' or 'heterosexual'. With such limited information, and such a small group, it's almost impossible to detect trends. HIV services may be justifiably concerned about high levels of risk behaviour among some transgender sex workers, but it's important to be cautious in making generalisations about transgender women as a group, or even transgender women with HIV.
For those transgender women living with HIV, isolation is a big problem. Jan, an HIV-positive trans woman interviewed for this article, did not access HIV services at all, saying, 'It's all about the gay guys. There aren’t really a lot of services for women with HIV and the ones that are there don’t really make you feel welcome. And the gay guys definitely don’t, so you are really on your own.’ However, she did have a regular GP, who worked from a high caseload practice in the inner city, and said, ‘They know their stuff and they treat you pretty well.’ The Tranznation study also noted that transgender people were very appreciative of those doctors who were considered supportive.
However, Jan avoided GLBT services, citing bad experiences. 'A lot of places say they are GLBT but they don’t really do anything for trannies,' she said. 'They don’t make you feel comfortable. It’s stressful and I come away feeling worse than when I went there. I don't want that.' More worryingly, Jan reported that 'trannies don't go to those services'. This suggests that marginalisation of transgender people is a problem not confined to the mainstream community.
By contrast, Jan spoke highly of the Gender Centre in Sydney, though it is not actually an HIV service. The need for specific services for transgender people was cited by Perkins in 1994, but the Gender Centre remains the only funded service in Australia specifically for transgender people. With little change over that time, it seems likely that transgender women like Jan will remain a footnote to the story of HIV in Australia.
 Kirby Institute for Infection and Immunity in Society (2011) 'HIV, viral hepatitis and sexually transmissible infections in Australia: Annual Surveillance Report 2011', p. 36
 Perkins, R., (1994) ‘Transgender lifestyles and HIV/AIDS risk’, AGPS, Canberra.
 Couch, M. et al. (2007) ‘Tranznation: A report on the health and wellbeing of transgendered people in Australia and New Zealand’, Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne.
 Herbst, J. et al., (2008) ‘Estimating HIV Prevalence and Risk Behaviours of Transgender Persons in the United States: A Systematic Review’, Aids and Behaviour, 12: 1-17.
 San Francisco AIDS Foundation (2009) ‘HIV Evidence Report: Transgender Persons and HIV’, p. 1
 Personal communication, Ann McDonald, Kirby Institute, 20 January, 2012.
 See Herbst, et al. It is worth noting, however, that studies of transgender populations often don’t include transgender men at all.
 Alan, D., Gold, J., Gunnan, J. (1990) ‘Transsexuality and HIV antibody seroprevalence: a study of risk factors’, Venereology, 3, 100-102
 National Centre in HIV Epidemiology and Clinical Research (2010) 'HIV, viral hepatitis and sexually transmissible infections in Australia: Annual Surveillance Report 2010', p. 4
 See Couch et al. pp. 30-37
 Hounsfield, V., et al. (2007) ‘Transgender people attending a Sydney sexual health service over a 16-year period’, Sexual Health, 4, 189-193
 Hounsfield et al. p. 191
 Perkins, p. 34
 Perkins, op. cit., p. 42
 Perkins, op. cit., pp. 34-42
 Personal communication, Ann McDonald, Kirby Institute, 20 January, 2012.
 Couch et al. p. 33