Levelling HIV support for the trans community

Brighton alumna Juno Roche (Critical Fine Art Practice BA(Hons) 1998) is a trans activist, who received the Blair Peach Award for her outstanding contribution to equalities. She has also appeared on the Rainbow List, the World Pride Power List and was recently shortlisted for Campaigner of the Year by the EDAs. Juno will be a guest speaker at the university’s Trans Conference in July, and ahead of the event, she kindly took the time to share a candid insight into her campaigning work about the impact of HIV on transgender women.

From worldwide data, we know that transgender women are disproportionately impacted by HIV. Some data suggests that 19% of all transgender women are HIV positive. In areas where there are concentrated populations of say, trans sex workers, it is far easier to be accurate about the numbers of this key population who are positive and therefore to direct research and public health funding and campaigns to support them.

Sadly, though, even when there is adequate data to show that trans women are greatly impacted by HIV, there is seldom targeted research and/or money to combat and support.

Less than 1% of all research funding is targeted to investigating and resolving this shocking fact. Far too frequently, transgender women are recorded as MSM (men who sleep with men) and therefore any research is structured around an entirely different key population; the results often only show that under these terms, transgender women appear non-adherent and as poor research subjects.

As a transgender women who is also HIV positive and who engaged in sex work, I can clearly state that my experience was very different to many others who became positive around the same time as I did, in the very early 90s, and that the set of life experiences I had, that meant I was marginalised and exposed to great risks, needs exploring on their own terms.

What we do know about transgender people in this country is largely based on anecdote and guesswork. We are perceived to be a depressed community and therefore there is a presumed linear thread to both risk taking and an unhealthy lifestyle. This has some truth embedded within it but so far research has been conducted using ill-fitting frames of reference and an often emotive language that does not hold up to implementing structural and systemic change.

Sadly the research on transgender men is almost entirely lacking (echoing the research on lesbians, bisexual women and HIV), and has its basis in a sexist notion that somehow trans men have an inextricable link to the ‘risks of women’ and are therefore not a key population. There is a wider notion that trans people as a generic group are not actively sexual. This utter misinformation is creating its own risk structures.

Currently, there is a real trend to include transgender women (especially) within emerging narratives (pre exposure prophylaxis (PrEP) for example), but the inclusion is without data and therefore we are fragile words within the narrative because our needs, desires and risks are yet to be documented in any meaningful way thus leaving us almost the ‘babies in the bath water’.

My work is about bringing together some of the most incisive and experienced research minds in this field with campaigners, activists and media representatives in order to begin the conversation around the creation, collection and understanding of research which looks at the transgender community, our lives, HIV and holistic wellbeing.

You can read more about Juno and her work here.