In 2013, Sadiq Ali was 24 and had just moved from Scotland to London. During a trip to the sexual health clinic, Ali was asked if he'd like to take part in the trial of a drug called Truvada , for use as a pre-exposure prophylaxis (PrEP). In other studies, Truvada had proven highly effective in preventing the transmission of HIV."I said no," Ali tells VICE. "I thought if I was on something that meant I couldn't catch HIV, I'd have unprotected sex more often. But then I went and had unprotected sex anyway, so I changed my mind and decided to go back to the clinic and get the medication."
Ali started taking PrEP but, a month later, he was diagnosed with HIV. He had contracted it just before starting the medication. "If I hadn't backed off, I would most likely be HIV negative," he says.
For others on the trial, the drug was effective and, overall, PrEP was found to reduce the risk of HIV infection by 86 percent. This backed up what had been shown in other studies: PrEP could be game-changing. Life-saving.However, last week, NHS England slammed the breaks on the roll-out of drug, saying in a statement that "NHS England is not responsible for commissioning HIV prevention services".The news came as a shock to HIV charities which had been led to believe that the NHS would fund PrEP if it was effective. The National Aids Trust branded NHS England "deceptive", while the British HIV Association said it was "deeply concerned".HIV affects people of all genders and sexual orientations but around 40 percent of new diagnoses in the UK will be men who have sex with men. In the UK, one in 20 gay men is HIV positive and, in London, the number rises to one in 10. So, alongside HIV charities, it's the LBGT community that has been at the forefront of the battle for PrEP. Reacting to the announcement, the Terrence Higgins Trust expressed "shock and disbelief".Given the relative cost-effectiveness of PrEP, in comparison to the price of putting someone on antiretrovirals, people are asking what really lies behind NHS England's decision.
Looking back, Ali says it was internalised stigma – a kind of self-slut-shaming – that stopped him from taking PrEP in the first place. Could these deep-rooted ideas about sexual morality filter through to high-level decision making?
Yes, says James Berry, 25, a maitre d' in a London restaurant. "The NHS England decision is, in all likelihood, rooted in the antiquated mentality that perceives gay men as walking acts of sodomy, our sex lives just a game of Russian roulette."Berry says he'd take PrEP in a heartbeat. "I'm not exactly having reckless sex – I've always been so paranoid of getting STIs, I've always demanded condom use – but I live in London, I'm a sex-positive twentysomething, so why wouldn't I want to take PrEP?"Sean Mooney, 27, agrees, saying he'd use PrEP if it were available on the NHS. "I don't think there's a gay man who doesn't worry about getting HIV. PrEP would take away that anxiety. Condoms can break or slip off, they're not perfect."
Mooney believes there's an element of stigma behind the NHS decision. It wouldn't be the first time healthcare is skewed in favour of the heterosexual population he says, pointing out that teenage girls are immunised against HPV but not teenage boys, leaving gay and bi men at risk of developing rectal cancer. "There's institutionalised bias in favour of straight people," he says.Greg Owen, an HIV-positive activist who runs PrEP information site IWantPrEPNow.co.uk, agrees.
"Nowhere is it more important to deconstruct stigma than when it involves health," he says. "The LGBT community, and especially men who have sex with men, have lived in fear of HIV/AIDS for 30 years now. For the first time since the epidemic we have the tools available to live free from fear of HIV. We need our government and our healthcare system to embrace that."Not everyone believes that the NHS England decision was fuelled by prejudice, but the feeling of disappointment is unanimous."The members of the NHS England board who decided this action I think genuinely care about the health of gay men and other high risk groups," says HIV consultant, Jake Bayley, pointing instead to "the fragmentation of the commissioning process". However, Bayley says, "I personally think [NHS England] have let a lot of people down with this decision."Like other people VICE spoke to, Bayley compares PrEP to the contraceptive pill. "We need to rethink the way we approach HIV prevention and PrEP is definitely a big part of the new prevention landscape. It can be likened to taking the oral contraceptive pill for women in the 1960s where unwanted pregnancies were dramatically reduced as it enabled people to take control of their sex lives."As with the advent of the pill, an undercurrent of judgement around PrEP is apparent, affecting the way it's talked about, even by those whose peer groups are deemed "at risk".
"About a year ago, one of my friends got PrEP somewhere and, at first, there was a bit of slut-shaming," Mooney says. "People thought 'Oh you just want to have bareback sex all the time', but then people started realising it's empowering to have another string to your bow when it comes to sexual health."PrEP is already available in the US, Canada, France, Israel and Kenya. As the UK is left in limbo, people are taking their health into their own hands, finding the drug through other routes.Stephan Bee, 31, buys generic PrEP online, without a prescription. "I'm fortunate to be able to afford this," he says. "Not everyone can. But the word of generic PrEP is slowly circulating. Every day I have guys on dating apps asking me where they can buy it."For now, NHS England has said it will provide £2million over two years to trial PrEP with another 500 gay men at high risk but the gesture is a drop in the ocean. In the same period, an estimated 5,000 gay men will become HIV-positive."While we wait for PrEP to be made available, thousands of gay men will become infected with HIV," says Matthew-Hodson, chief executive for the gay men's health charity, GMFA. "It's hard not to feel there's an undercurrent of homophobia in this decision. […] It does feel that, if HIV wasn't transmitted largely through anal sex among gay men, the group most likely to acquire HIV in the UK, the decision may have been very different."
@frankiemullinSign the petition here.More from VICE:How Gay Men Learned to Stop Worrying and Love SemenThe First HIV-Fighting Drones Have Been Deployed in AfricaWe Need Gay Sex Education in Schools Now More Than Ever