Imagine every sexual encounter you had carried the risk of a life-threatening illness. One of life’s fundamental processes bringing with it a stigma of a potential lifelong disease. For most heterosexual people in the UK, this is just a hypothetical. For men who have sex with men (MSM), it’s an all-to-familiar situation.
Imagine that one day you were told that there was an effective, affordable solution to this problem . You’d never have to worry about HIV in the bedroom again. You could have sex without ever thinking about disease, illness and death. The psychological relief would be unimaginable. Now imagine you’d been told that the NHS wasn’t going to give you that solution. Once again, sex becomes a threat, rather than a treat. This is the reality that unfolded for thousands of MSM on Monday 21st March 2016 after NHS England failed to recommend that HIV Pre-exposure Prophylaxis, or PrEP, should be available for them to use.
The concept behind PrEP will be familiar to any woman who takes the contraceptive pill. By taking Truvada before exposure to HIV, transmission can be prevented in the same way that the pill prevents a woman becoming pregnant. Most commonly, PrEP takes the form of a daily pill, but it can come in the form of gels, injections or implants.
Dr. Will Nutland is a PrEP user and researcher from the London School of Hygiene and Tropical Medicine. Sitting in the classroom he’s been teaching in all day, he says he’s been taking PrEP for 10 weeks. He buys it from India at a cost of just over £1 a day, compared to the thousands of pounds a private prescription would cost in the UK. “I think we’re at a moment of generational change. We could be significantly turning around HIV in this country if we had a well-thought policy on PrEP.”
Watch the video to find out more about PrEP.
Dr. Nutland’s confidence comes from the results of both his own research into PrEP and the results of a pioneering clinical trial. The PROUD trial compared rates of HIV infection in two groups of MSM; one who used PrEP immediately, and a second group who’d wait a year before starting. PrEP was so astonishingly effective that it was deemed unethical for the second group to wait a year before starting their treatment.
Given these results, many were expecting NHS England to recommend the rollout of PrEP across the NHS. One notable example was The Lancet, one of the world’s most respected medical journals. Instead, NHS England has made £2m available for additional testing into the cost-effectiveness of PrEP. Jane Ellison MP, Minister for Public Health said questions remained about how to integrate PrEP into existing sexual health services.
Nutland doesn’t mince his words when talking about NHS England’s decision. “To be honest, I think it’s a complete sham. We’ve been led to believe we were part of an NHS England process – it turns out to have been a complete waste of time.” He’s not alone in his criticism. Ian Green, CEO of the Terrence Higgins Trust, a leading HIV charity, called the decision “arbitrary and ill-thought.” Dr. Michael Brady, medical director for the same charity said: “it isn’t hyperbole to think about defeating HIV in a generation with PrEP.”
Many public figures shared their outrage on social media:
— Dr Christian Jessen (@DoctorChristian) March 23, 2016
— Caroline Lucas (@CarolineLucas) March 22, 2016
— Catherine West (@CatherineWest1) March 21, 2016
NHS England’s decision has understandably upset many people. MSM are the only group in which HIV infections are rising. The situation is particularly dire in London where one in 11 MSM are HIV positive. In fact, London’s MSM population has such high rates of HIV that 45% of all MSM with HIV in the UK live in London, and half of all new diagnoses happen within its 32 boroughs.
Dr. Nutland tells me of the changes he’s seen in London’s gay scene over the years. “You used to go out in Soho, and over a night you’d see leaflets, posters, outreach workers. On multiple occasions, you’d see messages about safe sex. There’s so little of that now.” He is confident in the reason for the change: money. HIV prevention programs have had their funding slashed in recent years, while the control of sexual health services has been passed to cash-strapped local councils. These councils have also railed against NHS England calling them “wholly inadequate“.
Whatever the reasons for the myriad problems in HIV care among London’s MSM population, one thing remains clear: they will not be quiet. MSM have long had to fight against the sclerotic nature of healthcare policy-makers to get their voice heard. ACTUP, a direct action group, forced the hands of the pharmaceutical industry and government in developing coherent policy on AIDS in the early days of the pandemic. This action continues today.
In the days since NHS England’s decision, a parliamentary petition about PrEP has been signed by over 10,000 people, guaranteeing a response from the Government. A protest at NHS England’s headquarters is planned. PrEP activists have been vociferously condemning the decision on national media. When you consider a near-foolproof way to prevent HIV has just been denied to the group most at risk of infection, and on a questionable basis, it’s easy to see why. It’s even easier to understand when you combine it with a background of continuing discrimination and ever-decreasing funding for MSM healthcare.
For a more detailed discussion of PrEP, watch Dr. Nutland’s TEDx talk (NSFW):