HIV rates are increasing in the UK and there's a miracle drug that can hugely help prevent transmission so why don’t we offer it to the gay men that need it most?
Marc Thompson was a teenager when he was diagnosed with HIV in 1986. “I got infected because of a lack of information and knowledge. I didn’t have the tools to look after myself, I wasn’t empowered – so I made ill-informed decisions”.
Since then, he’s worked tirelessly as a community activist in the field of HIV prevention. “I think it’s really important that the voices of people living with HIV are heard in the prevention movement. Prevention doesn’t happen without us. I was talking to someone about PrEP the other day, and I said to them, if PrEP had been available thirty years ago, would you have stopped me from getting it? And they said, ‘of course not’. That’s precisely why we need it.”
PrEP, or pre-exposure prophylaxis, is a hugely effective method of preventing HIV. Sometimes known by its brand name, Truvada, PrEP is a pill you take daily. In the recent PROUD study, the largest study of PrEP in the UK, it was found to reduce the number of HIV infections by 86 per cent – making it more effective than condoms (given that condoms often break or aren’t used correctly). It’s been labelled as a “miracle” drug by HIV prevention activists and public health experts – but it’s still not available on the NHS.
Meanwhile, HIV rates in the UK continue to increase. According to the Terence Higgins Trust, 6,151 people were diagnosed with HIV in 2014, with those in the MSM (men who have sex with men) category most at risk. Seven gay men are infected with HIV in the UK everyday – and the vast majority of these cases could have been prevented with a combination of PrEP and sexual health education.
As is usually the case, it’s the vulnerable who are most at risk from contracting HIV – people who lack education, or who aren’t able to insist their partners wear condoms. And given that PrEP costs in the region of £400 to buy privately, there’s no way that a lot of people would be able to afford the drugs to protect themselves.
NHS England is currently undertaking a study to determine whether PrEP will be made available on the NHS to those who need it – but many within the activist community are frustrated that the authorities have been so slow, when PrEP has been around for years. After all, we provide the contraceptive pill free of charge – so why not treat PrEP like the contraceptive that gay men in high-risk groups desperately need?
Will Nutland is a PrEP activist and co-founder of Prepster, which lobbies for PrEP to be available on the NHS. He’s also currently taking PrEP. “I started my PrEP activism about three or four years ago, and the movement keeps growing”. He explains why PrEP needs to be available on the NHS. “The truth is that not everyone can use condoms all the time. We need to be targeting PrEP at the groups most at risk”.
I ask him whether he thinks that the stigma that still exists around HIV is one of the reasons that PrEP still isn’t widely available in the UK. “I don’t know if it’s necessarily about stigma, as much as it’s about sex. It’s the same sort of argument that was being made in the 1960s about the contraceptive pill, when people were saying ‘why don’t they just use condoms?’”
Sarah Radcliffe from the National Aids Trust tells me why it’s not as simple as just telling people to wrap it up. “Around 70 per cent of new infections in the MSM community are from people who aren’t diagnosed – meaning they don’t know that they have HIV. So if the person they had sex with was on PrEP, it doesn’t matter, because they’re protected. And there’s actually a relatively small group of men in the UK who are most at risk from HIV – so a targeted intervention of PrEP into this group would have a huge effect. You could effectively stop HIV in its tracks”.
One of the reasons that some don’t want to see PrEP introduced in the UK – aside from the fact that it will cost the NHS a fair whack – is that they feel it will encourage more people to have condomless sex. They argue that if gay men are on PrEP, they’ll become more ‘risky’ and this will cause STI rates to increase.
I ask Dr Michael Brady, a sexual health consultant at King’s College London and medical director of the Terrence Higgins Trust, whether this is true. “The evidence we have from the PROUD study is that there was no difference in the rates of STIs from the group that took PrEP and the control group. So taking PrEP didn’t lead to an increase in sexually transmitted infections. It’s fair to say that STIs were high in both groups, but that’s exactly why we need PrEP. Human beings are not always going to be 100 per cent perfect when it comes to condom use. And PrEP can give that extra level of safety”.
To find out more, I speak to Harry Dodd, a 25 year old Londoner who took part in the landmark PROUD study. “It’s not that I actively chose not to use condoms regularly, but from time to time I hadn’t. Admitting that was a reality was the first step. So often people tell themselves ‘well I use condoms most of the time’, or ‘I always ask his status first’. And it suddenly dawned on me the potential ramifications of the risks I’d been taking – it only takes the one time for your life to be turned upside down”.
For Harry, the impact of taking PrEP was more than just physical. “It changed my mindset completely. For the first time, I didn’t get a sense of fear or guilt after having sex. Being raised in the shadow of HIV – and growing up knowing I was gay – this disease has haunted my childhood and adolescence. Knowing that PrEP works if taken correctly provides me with a sense of reassurance and empowerment that I’m confident many gay men my age have never felt growing up in the shade of this terrible disease.”
Whilst Harry was fortunate enough to have been provided PrEP for free on a clinical trial, a growing body of gay men are buying PrEP online – and there’s no guarantee that the drugs they are buying work. Will Nutland is one of these men.
“I’m one of a body of international HIV activists who import PrEP from places like India and test it out. I take it for a month then go for blood tests to see if I have the right levels of PrEP in my bloodstream. If it’s working, I share the details on specialist Facebook groups so that other gay men can buy it for themselves.”
While he’s not had any negative side effects yet, when you buy any drug online there’s a risk that it might not be safe, or that the drug might not even reach you. “There are currently 13,000 members in a Facebook group who share information about buying PrEP online. One of the problems we’ve been experiencing lately is that the customs officials in countries like Australia have been seizing the drugs”.
The cost of buying PrEP from India works out at around £40 per month, so it can be a smart move – if you’re certain what you’re actually getting is PrEP. Dr Brady tells me that it’s frustrating to see people having to buy PrEP themselves online. “It’s unfortunate, because people shouldn’t have to go and buy it for themselves – it should be available on the NHS for everyone who needs it”.
‘Young gay men get a diagnosis and they go online and the first thing anyone asks them is whether they’re ‘clean’”
Moral arguments aside, there’s actually a compelling financial case for PrEP to be available on the NHS. It costs the NHS in the region of £300,000 to treat someone with HIV over the course of their lifetime. Whilst PrEP is expensive, no-one takes PrEP for their whole life – it’s not appropriate for people who are in monogamous relationships, or who aren’t particularly sexually active. When you do the maths, prescribing PrEP for a few years to a targeted group of gay men winds up a whole lot cheaper than treating those men for HIV.
In the face of all the overwhelming evidence to support PrEP being made available on the NHS, the Government is still dragging its feet. An evidence review is currently ongoing, but until the results of that are known, more men will continue to become infected with HIV. And while advances in modern medicine have made it possible for HIV-positive people to lead long and healthy lives, this doesn’t change the fact that it’s a life-changing diagnosis which is still, sadly, subject to huge amounts of stigma in our society, as Marc explains.
“I live with the stigma around HIV, and I see it. I work with people who are diagnosed with HIV every single day. And the stigma is real. I know people who have lost their homes, who can’t date, who are afraid to go online, who get abused on a regular basis. Young gay men get a diagnosis and they go online and the first thing anyone asks them is whether they’re ‘clean’. We may not be pushing people’s food underneath hospital doors anymore, sure. But HIV stigma is like racism – it’s much more insidious now, but it’s still powerful”.
Marc wonders whether discriminatory attitudes might be the reason PrEP is not already available to those in need. “If the tables were turned and HIV was a massive issue for the white, British heterosexual community, PrEP would have been made available a year ago. But it affects black Africans, and gays, so the message is ‘behave yourself and use condoms and stop having anal sex and you’ll be okay’”.
I asked the Government why PrEP isn’t more widely available yet, and – surprise – they told me that really we all need to be using condoms. In a statement, they said “"NHS England is looking at all the evidence, including cost-effectiveness to inform their decision about any programme. Consistent condom use remains the best protection against all STIs, including HIV." While I get that the NHS needs to review all the evidence before introducing new drugs, I can’t help but wonder whether the heterosexual community would ever be forced to buy life-changing medicine online from India in the same way.
Ultimately, the hope is that PrEP will be as revolutionary for the gay community as the contraceptive pill was back in the 1960s for straight women. As Harry explains, “we look back at the contraceptive pill as the breakthrough which lifted women from sexual oppression, fuelled the social revolution of the 1960s and empowered women for the first time to take ownership of their sex lives without fear. I believe PrEP represents a similar game-changer. It can bring reassurance to a community torn apart by HIV – while tackling its spread at the same time”. Put simply, PrEP may allow the gay community, for the first time in their history, to live free from fear – and that’s something worth fighting for.
If you want to find out more about PrEP, Prepster is a good place to start, or you can support the campaign to make PrEP available on the NHS here.