Truvada, a form of PrEP. Photo via Wikimedia
“I’ve been HIV-positive for 25 years,” says Juno Roche. “But as far as statistics go, I’m invisible. A few years ago, I noticed one of my prescriptions still had “male” on it. They still had me down as a man who sleeps with men.”
UK-specific data on HIV positive trans women like Roche simply doesn’t exist. “No data is presented for transgender people,” reads the last Public Health England report into HIV transmission. Given that, globally, trans people are an estimated 49 times more likely to have HIV, the emission is serious.
As you read this, the UK is waiting for the NHS to reveal its latest decision on the rollout of Pre Exposure Prophylaxis (PrEP), Truvada, a drug that’s been shown to reduce the risk of HIV infection by 86 percent. In both the PrEP trials and the literature that followed, the focus was almost solely on cis, gay men. In the fight to be included, trans people stand alongside cis women, who are also noticeably absent from HIV campaigns.
Men who have sex with men (MSM) make up around 40 percent of new HIV diagnoses in the UK, so it’s logical that this group should have a central place in campaigns. Likewise, people of black African ethnicity are at higher risk and are, rightly, targeted by sexual health campaigns. However, campaigners believe the silence around other groups is dangerous.
Roche isn’t sure of the exact time she became HIV-positive. She sold sex during her 20s, to support a drug habit. She says that, for her, a desire to be accepted sexually had a direct impact on the level of risk she took. “You’re terribly vulnerable because, if you try to affirm your gender by sex—which I certainly have done—you become less keen to create boundaries like asking people to use condoms.”
“As chaotic as my life was then, if there had been a campaign which talked about a prevention for HIV, I would have sought it out,” she continues. “I was terrified of contracting HIV but knew I was at risk and that partners—paying or not—wouldn’t always use condoms.”
Sophie Strachan, is an HIV activist and trustee of the Sophia Forum, which campaigns for the meaningful involvement of women living with HIV in research, policy, and healthcare. As a woman living with HIV, Strachan says she often feels “secondary” when it comes to HIV/AIDS prevention.
“A significant population is being excluded,” she says. “Women are left behind in the response to HIV, yet we make up just over half the number, globally, of people living with HIV. There are 22,500 women with HIV in the UK.”
Being omitted from campaigns, Strachan says, means that “women of all ages and diversity are walking around just not believing they’re a risk group when it comes to HIV.”
“I’m seeing women who are presenting at hospital with acute, AIDS-defining illnesses—because there’s been a missed opportunity with their GP or because they’ve had undiagnosed HIV for a long time—just completely shocked that this is happening to them,” Strachan says.
Clinical trials across the board have traditionally been made up of cis men. As a consequence, there’s a lack of data around the way HIV and HIV medication affects women’s bodies.
When women are mentioned in relation to HIV, the focus is often on childbearing and the risk of transmitting HIV to the fetus. There’s also an automatic assumption that everyone is cis and heterosexual. Women who have sex with women have been largely invisible in the response to HIV/AIDS, and data remains as low for them as for trans women.
“It doesn’t come into the conversation that lesbian and bi women are even a number in the global epidemic of HIV,” Strachan says.
Crucially, for women, HIV can be both a cause and a consequence of gender-based violence. A recent report revealed that in the UK, 80 percent of women with HIV have experienced violence (the number is 89 percent globally).
Given these additional risks, Strachan says she’s disheartened at the lack of women-specific campaigns. PrEP would be an ideal additional choice for women unable to use condoms or for those who want to become pregnant. For vulnerable women, PrEP could be life-saving because, unlike condoms, it is personally controlled.
At CliniQ, a sexual health center for trans people, operating from London’s Dean Street Clinic, co-founder Michelle Ross says that invisibility in HIV campaigns is a huge problem.
“If you think of the campaigns that are going forward around access to PrEP, there’s very little awareness about the issues for trans women and trans men, or for cis women,” Ross says. “It reaffirms that people are invisible and therefore you don’t count. If you’re already a stigmatized community, it reinforces this. What’s really important is seeing someone you can relate to, hearing about health issues that relate to you.”
Related: Watch our documentary about Truvada, the revolutionary new drug that can prevent HIV
Outside spaces like CliniQ, visiting the doctor may already be an ordeal. “I was talking to a trans man who has a vagina and a penis, and they said that they’ve had people run out of the room when they went for a cervical smear,” Roche says. “Are you going to go back when that happens?”
Ross says that HIV campaigns need to address the specific needs of the trans community. “What I’d like to see is culturally aware terminology, especially around HIV meds,” she says. “There can be a real concern for some trans people that HIV meds are going to mess with your hormones. If you’ve reached a place where you feel more comfortable with yourself because of the hormones you’re taking, undoing that can have a really negative effect.”
For its part, PHE says it’s aware of the issues and is taking steps to fill in the data gaps. Valerie Delpech, Head of national HIV surveillance HIV and STI Department told VICE, “Public Health England has been working to improve the recording of gender identity among those attending for NHS HIV care. We are now rolling out a new reporting system across England, which includes an option for people to self-identify as transgender or non-binary.”
Earlier this month, the Sophia Forum called for PrEP to be made available for everyone who needs it. The statement was backed by organizations including ACT UP London, Body & Soul, Global Network of People Living with HIV, National AIDS Trust, and Positively UK.
High profile PrEP activists—who are mainly gay, cis men—agree that this isn’t a case of us versus them. As Greg Owen, an HIV positive campaigner and founder of I Want PrEP Now says, “Our approach to PrEP and HIV prevention needs to be the same as the virus’s approach to us: i.e., it doesn’t give a shit who you are. The clue is in the name: Human Immunodeficiency Virus. If you’re human this is your issue. PrEP needs to be access for all.”
Follow Frankie Mullin on Twitter.