HIV and transgender issues at AIDS 2014

IAS 2014 graphic 2Simon Collins, HIV i-Base

Where available – and information is scare even from resource-rich countries – data increasingly report very high rates of HIV in transgender people, especially those who have sex with men. The lack of data is itself a key priority for trans activists, as “without data we remain invisible to services and providers”. [1]

It is therefore appropriate that transgender people are one of the five groups that are the focus of the WHO consolidated HIV guidelines for key populations. The other four are: men who have sex with men, people who inject drugs, people in prisons and other closed settings and sex workers. [2]

In this article, the term trans* is used to refer to someone who identifies as a sex or gender that is different to the one they were assigned at birth.

At the launch of the WHO guidelines, Kate Montecarlo Cordova from the Association of Transgender People in the Phillipines, talked about the high vulnerability and specific health needs of transgender people. In many countries, the prevalence of HIV among transgender women is as high as or higher, than among men who have sex with men.

For example, in a meta-analysis published in 2013 of 11,066 transgender women from 14 countries – the US, Asia-Pacific (6), Latin America (5) and Europe (3) – the pooled HIV prevalence was 19·1% (95% CI 17·4-20·7). This proportion was similar independent of setting: 17.7% in ten low- and middle-income countries and 21·6% in five high-income countries. This data produced an odds ratio for being HIV positive in transgender women (compared with all adults of reproductive age) of 48·8 (95% CI 21·2-76·3). [4]

Although data and research are still limited, this trend appears to be slowly changing. A global search for “transgender AND HIV” on PubMed presented at the IAS conference in 2012 reported finding 98 results for 2010-2012, compared to only 65 results from 2007-1009 and 18 results from 2002-2006. [5]

This article briefly reviews the studies presented at the conference and link to interviews with two delegates who are working to ensure even greater presence of trans issues at the meeting in Durban in 2016.

To inform the new guidelines and as a result of its Civil Society Reference Group, WHO worked with trans people on a small qualitative survey (34 people, 14 in-depth interviews). The result stressed that transgender people’s needs should be seen as separate from those of other populations (particularly independent of MSM with whom they are usually grouped). Guidelines should include a specific review of evidence and values and preferences, and a specific brief on young transgender people.

The new WHO recommendations are an important first step – but they are also dependent on supportive legislation (especially to tackle violence), decriminalisation, community empowerment and health services that are available, acceptable and accessible.

Criminalisation and the very real threat of violence were common themes in many of the sessions discussing transgender issues, including a symposium in the main programme on criminalisation, which is also available as a webcast. [6] The criminalisation session included legal case examples from the US, India, Nepal and Uganda.

Manisha Dhakal from Nepal focused on examples from the Nepalese legal system, which has a 100-year old code against “unnatural sex” (undefined in terms of specific activity) that is often misapplied and misused against transgender people, especially if they are sex workers. Trans* men are threatened with human trafficking charges if they have relationships with women. Both the police and judiciary lack understanding and transgender people who are the victims of crime are often punished rather than supported. More positively, in 2007 the government granted rights to transgender people including passport recognition for “other” gender status. There is some movement towards a same-sex relationship law and issues surrounding sexual orientation and gender identity policies are addressed in schools and universities. [7]

The issue of funding to enable adequate and sustainable development of trans* communities – directly related to the capacity to sustain this critical work – was the focus of another satellite (co-sponsored by amfAR, the American Jewish World Service (AJWS), and the Global Action for Trans* Equality (GATE). [8]

Although limited material from the meeting is available – a missed opportunity that is frustrating for many of these sessions – the presentation by Joe Wong, Asia Pacific Trans Network (APTN) is available online. [9] This talk summarised the findings from an extensive survey of 340 trans* and intersex groups globally, most of which work locally (only 22 work regionally and 6 work globally). Of these groups, 313 were mostly, or exclusively, comprised of HIV positive people.

The resulting 32-page report covers human rights violations against trans* and intersex people, key milestones for organising including the importance of being trans*-led (reported by 198 groups), current and future funding, and recommendations. Although the greatest number of groups came from the US (n=100), 54 organisations were based in Sub-Saharan Africa and 51 were from the Caribbean, Central America and South America. Median annual budgets (91 organisations) were less than US $5,000 (including 66 unfunded groups), and were lower for trans*-led groups. Only seven organisations have a budget higher than $1 million. [10]

Other notable sessions covering transgender issues in the AIDS 2014 programme include:

  • An oral abstract session (abstracts, slides and webcasts all available) with presentations covering HIV risk in transgender communities, disclosure and persecution, ART support and housing. [11] This session included a webcast on the positive effect of progressive Argentinian legislation that supported transgender identity and rights that within one year and directly lead to greater empowerment through schools, education, work and civil society. The webcast is essential viewing and a model for the future. [12]
  • A peer-led workshop on trans* men who have sex with men – a group that are rarely considered in HIV-related and LGBT-produced health resources. [13]
  • A presentation on trans* women and drug use by Nyah Harwood from the Centre for Social Research in Health at the University of New South Wales and the International Network of Women who use Drugs. The lack of scientific data in this talk was directly related to transgender people not historically having an assigned epidemiological category: “The norms of sex and gender that underpin most existing research methodologies constitute trans people as invisible and therefore erase them, characterising the lives of trans women with extraordinary physical and structural violence”. [14]
  • A focus on sex work among transgender women as part of the Lancet special issue on HIV and sex work. [15] Despite higher HIV risk, there are almost no interventions focused on this population and changes need to be grounded in empowerment and led by communities. This presentation pointed out the lack of data on the risk related to gender-related surgery.
  • On a policy level, at another satellite meeting on sexual and reproductive health and rights, organised by the International Planned Parenthood Federation (IPPF), Leigh Ann van der Merwe, a transgender woman from South Africa, stressed the importance of including sexual and gender minorities in the post-2015 Millennium Development Goals, as part of a platform that also included young people living with HIV, sex workers, and people who had experienced gender-based violence. [16]

A quick search of the AIDS 2014 online programme found 28 sessions and 105 abstracts with the word transgender. This compared to 19 sessions and 135 abstracts from the Washington conference in 2012.

But, although this year the IAS conference included transgender issues throughout the programme and in more sessions, the presentations were overwhelmingly in the community-based satellite meetings rather than the main conference, or in the Global Village – the community counterpart to the more sober scientific and policy sessions. Very few sessions were webcast.

Sometimes the IAS World AIDS Conference can be seen as two separate meetings. It is not unusual – and always disappointing – to hear that someone has been so busy with one venue that they hardly left it to interact with the other. The crossover should be the point of the conference. If not, the benefit from community networking is unlikely to affect the research and policy agenda and, conversely, researchers will remain too removed from the people whose lives they hope to change with their work.


Perhaps the most positive presentation was the results of legal changes in Argentina, which dramatically affected the quality of life for transgender people and showed the importance of policy changes.

Similar changes should be easy in the UK, yet many NHS services including HIV clinics do not cater appropriately for transgender people. Trans* people are invisible in sexual health and HIV data collection and do not receive appropriate informed services.

For example, we have no real statistics in the UK for how many trans* women and trans* men are HIV positive. At present the only dedicated community-led sexual health, HIV and holistic well being service for transgender people is a weekly clinic at at 56 Dean Street in Soho called cliniQ. [16]

Michelle Ross, co-founder of cliniQ commented that: “We are proud of our achievements, but we are not proud to be the only such service. There needs to be a European, UK response on HIV in trans* communities that has parity to the excellent work being done in the US by Centre of Excellence and people like JoAnne Keatley”.

“Some of the very real barriers as to why many trans* people do not access mainstream sexual health service; are issues of being mispronouned, misgendered, and lack of awareness of trans* health needs. Sexual health services in the UK are gradually and slowly becoming aware of how much this is a concern. This is mainly through the activism of some trans* people who are committed to bringing an awareness of the issues of HIV and holistic sexual health by providing community led, culturally appropriate services for trans* people, partners, and families. Trans* people’s issues on HIV are global issues of human rights and equality.”


  1. JoAnne Keatley, director of the Centre of Excellence for Transgender Health at University of California, San Francisco; and co-chair of the International Reference Group on Transgender People and HIV (IRGT). Interview at AIDS 2014. (24 July 2014).
  2. WHO. Policy brief: Consolidated guidelines on HIV prevention, diagnosis, treatment and care for key populations. (July 2014)
  3. Montecarlo Cordova K. An often forgotten key population: issues for transgender people. Non-Commercial Satellite SUSA31. Launch of the WHO consolidated Guidance on HIV prevention, diagnosis, treatment and care for Key Populations. 20th July, AIDS 2014, Melbourne. (PowerPoint slides)
  4. Baral S et al. Worldwide burden of HIV in transgender women: a systematic review and meta-analysis. Lancet, 2013, 13:214-220. (PDF)
  5. Keatley J. Epidemiology of HIV in transgender communities. Bridging session TUBS01 (24 July 2014). IAS 2012, Washington. (Session) (Webcast)
    Criminalization of key populations: how to respond to HIV? Symposia Session MOSY04.
  6. Dhakal M. Moderated discussion: the impact of law enforcement on human rights. MOSY0403. AIDS 2014, Melbourne. Webcast link. (at 17 minutes)
  7. The Impact of HIV funding on trans* communities: keeping human rights central to the HIV response. Non-Commercial Satellite MOSA04. (21 July 2014), AIDS 2014, Melbourne.
  8. Wong J. The Impact of HIV funding on trans* communities: keeping human rights central to the HIV response. Non-Commercial Satellite MOSA04. (21 July 2014), AIDS 2014, Melbourne. (PowerPoint slides)
  9. Global Action for Trans* Equality (GATE) and American Jewish World Service (AJWS). The state of trans* and intersex organizing: a case for increased support for growing but under-funded movements for human rights. (January 2014). (PDF)
  10. Unpacking risk and HIV in transgender communities. Oral abstract session WEAD03. 23 July 2014, AIDS 2014, Melbourne.
  11. Aristegui I et al. Transgender people perceptions of the impact of the gender identity law in Argentina. 20th IAS conference, 20-25 July 2014. Oral abstract WEAD0303. (Abstract) (Webcast)
  12. Same-sex attracted trans-men: inclusion, participation and health promotion. Community Skills Development Workshop MOWS12. 21 July 2014. AIDS 2014, Melbourne.
  13. Harwood N. Transgender and drug use. Presentation TUSY0306. Symposia Session TUSY03: Women drugs users: our voices, our lives, our health. Direct webcast link:
  14. Poteat T. Sex work among transgender women: HIV risk, prevention, and interventions. Part of the Lancet Issue on HIV and Sex Workers, Symposia Session TUSY04. 22 July 2014. AIDS 2014, Melbourne. Session: (PowerPoint slides)
  15. van der Merwe L. Importance of key population / engagement to promote sexual and gender rights in local country/region. Non-Commercial Satellite SUSA15. Gender, HIV and SRHR in the post-2015 framework. 20th July, AIDS 2014, Melbourne.
  16. CliniQ at 56 Dean Street clinic in Soho, London.

Links to other websites are current at date of posting but not maintained.