When Alex was living in Cardiff in 2017 he was able to take pre-exposure prophylaxis, more commonly known as PrEp – a drug readily available in Wales that reduces the risk of getting HIV during sex. But when, in 2018, he moved to London, he was turned away from multiple sexual health clinics, which said they were oversubscribed with men trying to access the drug.
“I became much more anxious about my sex life again and was paranoid every time I’d meet with a new man,” the 27-year-old tells HuffPost UK. “It’s crazy that it’s not on the NHS. I genuinely think if it was a drug aimed at straight people it would already be being given out like the pill is to women.”
PrEp is available nationwide in Scotland and through uncapped trials in Wales and Northern Ireland, but access remains severely more limited in England, where an NHS trial launched in 2017 with a cap of 10,000 places.
Although NHS England increased places in the PrEp Impact Trial to 13,000 participants in summer and recently said it hopes to extend this to 26,000 before 2020, it is yet to confirm when these places will become available – or what will happen when the three-year trial is up.
Around 40% of trial clinics across England are currently turning away gay and bisexual men due to oversubscription, according to the Terrence Higgins Trust. Six men who’ve failed to access PrEp have told HuffPost UK the experience has left them feeling “depressed”, “anxious” and “frustrated”.
Charities have also warned that some men who were unable to access PrEP through the NHS trial have now contracted HIV. PrEp is a pill designed to be taken before sex – either as a low daily dose or higher targeted dose up to two hours before sex, then a further tablet after sex. It works by blocking HIV if you’re exposed to it, before it has the chance to infect you.
The main brand of PrEP used is called Truvada, which contains Tenofovir and Emtricitabine, (drugs commonly used to treat HIV), but there are also other versions of PrEp supplied through online pharmacies.
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Mark, 36, from Manchester, describes being turned away from clinics participating in the trial in Manchester, Liverpool and Birmingham as frustrating.
“I felt really disheartened and, I suppose, like it had made a mockery of the people who had done all that campaigning for the trial to happen,” he says.
Ryan, 26, from Hertfordshire, was also surprised how quickly places filled. He says he and his partner both tried to call separately as soon as PrEp became available in their area, with no luck. The pair are in an open relationship, so Ryan says they wanted to take part in the trial to “keep ourselves and each other safe”, but being unable to do so has been stressful, especially for his partner.
“As he suffers from anxiety, especially in regards to his health, catching HIV is a particular worry of his,” Ryan explains. “We use the standard precautions of course, but PrEP would definitely make our sex lives much easier and stress-free.”
Oversubscription, as well as rigid criteria, is preventing some men from accessing the drug. The trial focuses on people considered at “high-risk” of exposure to HIV. According to the Terrence Higgins Trust, this includes: Cis men who have sex with men and trans women who are HIV negative and have had condomless sex in the past three months and think they will again in the next three months.
People who are HIV negative and expect to have sex without condoms with an HIV positive partner/s who is/are not on effective medication.
People who don’t meet the first two descriptions and might be having heterosexual sex, but have been clinically assessed as being at a similar high risk of becoming HIV positive.
Todd Foreman, 45, who’s based in London, is now purchasing PrEp from abroad after being turned away from the trial. He thinks the criteria is unfair.
“I’m quite concerned that they are only offering spaces on the trial to people who have already engaged in unprotected sex,” he says. “What about people who have consistently used condoms but want to access PreP as an option? The logic seems to be that you have to have already put yourself at risk before they will allow you on the trial and that isn’t how it should work in my opinion.” Stuart Gray, 48, has also tried and failed to access PrEp in Wigan, Liverpool and London, where he now lives. He says being unable to access PrEp has impacted his mental health.
“It makes me worry for my health and makes me very anxious and often depressed,” he says. “I am a diabetic with other health issues and I struggle to get an erection and use an injection to get hard. I lose this if I attempt to put on a condom. This is why I have bareback sex [without a condom] and would prefer PrEp as protection.”
Having access to PrEp would also offer an extra layer of reassurance to men like Adam Almeida, 23, who is from Ontario, Canada, but now lives in London. Almeida decided to start taking PrEp after speaking to a HIV campaigner who told him “sometimes condoms can break – and it’s a moment that could change your life forever”.
Adam called multiple clinics in London but was told they didn’t have trial places, but PrEp is available for free to under 24s in Ontario, so he’s arranged for a prescription through his old GP. “Now my dad has to go to the pharmacy in order to pick up my medication and fly it over here to London,” he explains. ”It’s ludicrous that this is the most simple solution.”
So why isn’t PrEp as widely available in England as it is in other countries? Like most things, it comes down to money.
“The funding of PrEP in England is a sorry saga,” suggested a recent editorial in the Lancet journal , citing NHS England’s 2016 statement that it would not fund PrEP because disease prevention fell within the public health responsibilities of local authorities, even as those authorities resisted due to budget constraints. In subsequent legal actions, the courts ruled that NHS England could fund PrEP, but the matter still isn’t fully resolved. “Although it is now clear that funding should no longer be an obstacle to universal access, to date there seems to be no resolution among health authorities for how to fund long-term PrEP roll-out in England,” the Lancet article concluded.
Charities including the Terrence Higgins Trust and Stonewall have praised NHS England for saying it will expand the PrEp Impact Trial in principle, but say that we now need action.
“Words alone will not unblock this current impasse that we find ourselves in,” Ian Green, chief executive of Terrence Higgins Trust tells HuffPost UK.
“We are still waiting for the places to be made available and there is no timetable to say when, in reality, we can expect to see these extra places locally. Put simply, this delay is impacting more and more gay and bisexual men who are at increased risk of HIV. ”
Laura Russell, head of policy at Stonewall, adds: “While we’re pleased the government are committed to expanding the PrEP trial in principle, we need to see urgent action to make this a reality. Gay and bi men are currently being turned away from clinics – with some going on to be diagnosed with HIV.”
The PrEP Trial Board has said it is currently assessing the trial’s capacity for expansion. It will then be for individual local authorities to decide how many additional places they wish to take up and to give the green light to clinics to expand recruitment. Pride + Prejudice: Think We’re Living In A Post-Homophobic Society? You’re Wrong
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John Stewart, director of specialised commissioning at NHS England, tells HuffPost UK: “Through the PrEP trial, over 10,000 people are already receiving access to this important HIV prevention measure.
“The trial researchers have submitted a case for increasing trial places and NHS England will play its part in delivering on this recommendation by committing to fund additional places in line with existing funding arrangements.
“This will help ensure the learning from the trial is robust enough to fully inform the planning of a national PrEP programme in partnership with local authorities for the future, as well as protecting more people from HIV right now.”
If a national programme happens, it could make a huge difference for men like Alex, Todd, Mark, Ryan, Stuart and Adam.
“If it was available nationwide on the NHS, I’d feel much more assured that this disease, which has haunted gay men for decades, is being tackled once and for all,” says Alex. “It would show that there’s a conscious effort being taken to eradicate it. It would make me feel freer.
“To be honest, it wouldn’t change my behaviour much – but it would mean that, when I do meet a new guy, I could do so without this lingering paranoia about this disease that has killed so many gay men.”
*Surnames of some interviewees haven’t been published at their request to protect their identity.