HIV prevention drug, PrEP, has been heralded as a potential game changer in the battle against rising transmission rates among gay men, yet the NHS continues to deliberate on whether to make it available. Chris Godfrey caught up with the duo behind the new PrEPster.info website, Will Nutland and Marc Thompson, who intend to take the fight for PrEP access into their own hands.
Hey guys, tell me a bit about yourself and how you got into campaigning for PrEP access?
Marc: We’ve both been working in sexual health promotion for over 20 years. We met when I was director at Big Up, and Will had started at THT, where we both later worked together. I’ve always had a focus on HIV, men who have sex with men, and black and ethnic minority communities. Right now I am the national coordinator of Project 100 at Positively UK, providing peer support to people living with HIV across the country.
Will: I’ve been an HIV prevention activist since the late 80s. I set up a community gay men’s health project in Norwich, before moving to London to work at THT where I was head of health promotion. It was there that Marc and I both started the first PEP awareness programme. Now I’m a social researcher and just finishing my doctorate exploring PrEP in men in London.
Why is PrEP access so important?
M: I really believe PrEP is a game changer in HIV prevention. We’ve been using a range of HIV prevention strategies, with mixed success, for 30 years. With the right information and support, PrEP is another prevention tool that gives those most at risk more choice. HIV prevention has for too long felt like the responsibility of the person living with HIV, particularly since we understand that taking anti-retrovirals and being undetectable means you aren’t infectious. PrEP levels the playing field, making prevention a shared responsibility between HIV positive and HIV negative people.
W: Agreed, it has so much potential – not only in preventing new HIV infections, but in reducing stigma and fear around sex. Every person I know who is using PrEP has said the same thing: “taking PrEP reduces my anxieties about HIV”.
How would it have changed your life?
M: If PrEP had been available before I was diagnosed HIV+ in 1986, I would definitely have taken it. As a young, black, gay man who’d left school at 16 I ticked all the boxes of someone with higher HIV prevention needs and therefore at greater risk of infection. I wasn’t always able to negotiate safer sex or access condoms. Quite simply, having PrEP would have stopped me becoming infected, saved me years of dealing with HIV stigma and worrying about transmission.
What do you hope to achieve with your new initiative?
M: It’s been sometime since we’ve seen a grass roots, community led HIV prevention programme, so PrEPster is much needed. We hope that PrEPster.info will be part of the bigger push that ultimately leads to PrEP being available on the NHS to those who need it most. I hope that it will educate, inform and raise awareness about one of the most significant developments in HIV prevention in 30 years. Relevant and appropriate information and education on sexual health has been absent from the scene for a while. PrEPster.info also calls on people to agitate for PrEP, so I hope it lights a spark of activism in the community to demand more.
W: The website builds a ground-swell of people who will understand the importance of PrEP and will want to take action to make access happen. As we’ve been developing the website we’ve been working with people who have previously not known about PrEP and are now out talking to their friends about it and lobbying for it.
What do you think the biggest challenge will be in securing access to PrEP?
M: There is a real thirst for more information and access to PrEP but I think the biggest challenge will come from in and outside of the community. People who think condoms are and should be the only prevention tool, the bureaucracy of the NHS and the worry about cost.
W: Even if a decision is made for PrEP to be made available on the NHS, local authorities in England (that have a responsibility for public health) will still have to plan for and commission the PrEP ‘wrap-around’ services that sexual health clinics will provide – such as regular HIV tests. Few local authorities are planning for that and there’s certainly the potential that some will say “we’re not paying for this”. That’s why one of PrEPster.info’s actions is lobbying Directors of Public Health and asking them what they’re doing to plan for PrEP. Local authorities might be the biggest challenge.
• For more information about PrEP and the fight to make it available, visit www.PrEPster.info
