There is no data showing the number of trans people living with HIV in the UK. Globally, UNAIDS estimates that trans people are 49 times more at risk of living with HIV than the general population and that 19% of the worldwide trans population is HIV positive.
Public Health England (PHE) produces annual reports on HIV in the UK, but it is largely silent on trans people, dividing the approximately 100,000 people living with HIV into men who have sex with men (MSM), heterosexual women and heterosexual men. Thousands of trans people have been recorded as MSM, reflecting the outdated understanding of gender when HIV sampling began. We need better data collection so that resources can be appropriately apportioned and the needs of trans people met.
Existing data on trans people living with HIV comes largely from Latin American, Caribbean and Asian countries. These countries lack effective healthcare systems and legislative rights encompassing trans people. Trans participants in surveys are often sex workers. These factors give a distorted view around trans people and HIV in the UK.
Furthermore, the existing data only discusses trans women living with HIV. We need to know if there are trans men and intersex people living with HIV in the UK and how their needs differ.
I spoke to the trans activist and writer Juno Roche, who is HIV-positive.
‘If I’m going to die,’ she said, ‘then I’m going to die with a degree.’
It is only by listening to HIV-positive trans voices that we can start to understand their experience. Juno has been HIV-positive since the early 90s and is now a leading trans campaigner, advocate and writer.
Juno’s journey with HIV is inspiring. Juno was diagnosed with HIV 25 years ago when she was a student. Following her diagnosis, Juno’s university asked her to leave. She refused to quit.
Juno had received a DS 1500 form, entitling her to six-months’ death benefits, so it is no exaggeration to say that many of the institutions and organisations supporting her were expecting her to die.
Juno went through a period of addiction, but during this time she fought for the rights of HIV-positive people. Her activism was born from the raw need to survive. Juno’s empowerment lies in her battle with HIV, which has made her the person she is today, and in her acceptance of her status.
Two issues emerge on treatment and prevention of HIV for trans people in the UK. Firstly, many trans people are apprehensive about the medical system and, in particular, sexual health services.
When she was first diagnosed, Juno recalls, ‘I would walk into an HIV clinic and all they would see is sex work.’
Many medical professionals still lack awareness on trans issues. Juno recounts one doctor saying, ‘I’ve never looked at a trans vagina.’
Awkward situations may also arise where an individual is recorded as one gender in medical records, but they present as another. Given the level of distrust, it is unsurprising that many trans people are among the 40% of people who are diagnosed late with HIV every year.
Secondly, many trans people, at some point in their lives, seek affirmation of their gender identity through sex. Trans women are and want to be perceived as feminine.
Juno, with great candour, says that there was a time when she ‘never said no’ to sex and was reluctant to insist on safer sex, as she was unsure how the other person would react.
Michelle Ross heads ClinQ, a sexual health and wellbeing service for trans people. On Mondays and Thursdays CliniQ have a therapy centre. The horror of seeing friends dying of AIDS galvanised her to work in HIV prevention. She set up CliniQ about 10 years ago.
Michelle describes CiniQ as ‘founded, developed and delivered by trans people’.
Michelle’s goal is to make HIV prevention inclusive of trans people. On a busy evening the clinic might see 30 patients. It is a microcosm of good practice.
CiniQ uses a two-stage data collection process, taking into account where gender is different to that assigned at birth. Hopefully, one day, this will be rolled out across the NHS, although Michelle reiterates the lack of awareness she still encounters around gender identity within the NHS and continued resistance to moving away from a binary approach.
Our understanding of gender has evolved, but with the exception of pockets of good practice, such as CliniQ, trans people living with HIV are not getting the services they need. Misunderstanding and stigma is most pronounced for trans people living with HIV.
Activists, health professionals, politicians and the public in general, must start taking trans people into account, including those living with HIV.