Changemakers: How Greg Owen powered England’s fight against HIV

Earlier in September former Welsh rugby captain Gareth Thomas went public about living with HIV. Days later, Queer Eye star Jonathan Van Ness told the world that he was diagnosed with the condition seven years ago. Nearly 102,000 people in the UK have HIV – but that number would likely be much higher without the furious activism of Greg Owen.

His efforts set off a chain of events that ultimately saw an English court rule that people must be able to get PrEP (pre-exposure prophylaxis) through the NHS. It’s a preventative pill that protects HIV-negative people from contracting the virus nearly 100 per cent of the time, even without practising safe sex. And getting it to the UK was a fight.

The eldest of six children, Owen grew up in west Belfast until 1998 when he moved to London to attend drama college. It wasn’t until 2012 when Owen heard about PrEP online, after it was approved by regulators in the US. A few years later, he was working part-time in a bar, recently out of a long-term relationship and homeless. He decided he should start taking it to make sure he was protected.

“The only way to get it in 2015 was to go to a sexual health clinic and say that you were possibly exposed to HIV to get PEP [which can sometimes stop someone developing an HIV infection after being exposed],” says Owen, now 39 and working with the Terrence Higgins Trust to increase access to the medication. “One of the pills in that treatment is the one we use for PrEP. So you would go and claim the false risk, get the drugs then throw half of it away.”

Instead, a friend offered him some leftover Truvada, the branded PrEP pill, so Owen made plans to drop by a sexual health clinic for a test – necessary before someone starts on the preventative medication. It came back HIV positive.

Great comment by @Greg0wen about need for #PrEP for women and sex workers at #FTC2019. Listen to him talk about importance of #PrEP4women on #aidsmapLIVEpic.twitter.com/G10nIkua7s

— Susan Cole-Haley FRSA (@susancolehaley) September 11, 2019

Feeling overwhelmed, he called friend Alex Craddock, who was already taking PrEP after getting it free of charge while in New York. “I was trying to find PrEP while he was trying to find a way to stay on it. We thought, why the hell are we having to jump through loopholes and try to help each other when it should be the NHS and HIV organisations? We were really angry.”

They turned anger into action. With no website-building experience between them (“We used the template of an opticians’ website, just took the eye icons off it”), Owen and Craddock spent the next seven weekends building online PrEP information and buyer-seller hub iwantprepnow.co.uk, which very quickly took off.

And others mobilised. Owen, Craddock and around 80 other campaigners and organisations joined forces as #United4PrEP. NHS England claimed that the responsibility for PrEP provision was with local government; they disagreed. So charity National AIDS Trust (NAT) stepped out from under the United For PrEP umbrella and took the NHS to court.

The last public awareness campaign we had was those tombstone adverts in the Eighties

“Austerity. I get it. Public services were being cut everywhere,” Owen says. “But a lifetime of care for someone with HIV can cost up to £360,000.

“Then you look at the type of people who HIV disproportionately affects and you see there’s more to it than money. Gay men, people who inject drugs, some trans women, black and brown communities, all the people who typically aren’t centred in our system. HIV is hugely political.”

The NAT won; NHS England appealed. Judges ruled in favour of the NAT a second time. The NHS would have to make PrEP available.

“But you can’t really enjoy it,” Owen says. “You’re know that real-world delay means people like me, people who I love, people I don’t even know, are becoming infected with HIV while you mess around with this.”

Since the win, NHS England has been enrolling thousands on its PrEP Impact trial. Earlier this year, it was announced that the need for the medication had far outstripped what experts predicted, so places on the trial would be doubled to 26,000. New government figures show HIV diagnoses at their lowest level since
the millennium.

Owen is gearing up for when NHS England moves beyond the trial phase to routinely commission PrEP, which will “involve a lot of work to get people who are self-sourcing on to the NHS”. Otherwise, he wants to take a step back from being the face of PrEP; he reckons it’s someone else’s turn.

How can we tackle the stigma around HIV which, if caught and treated, doesn’t change a person’s life expectancy?

“Education is key,” Owen says. “The last public awareness campaign that we had was those tombstone adverts in the Eighties. I don’t know how we can re-educate people on what it’s like to live healthily with HIV today when the last touchstone that people have is that.

“We need sex education on a broad scale that teaches everyone about HIV, whether they’re from an at-risk group or not. That’s when the stigmatisation starts to drop, and that’s one thing we could do really easily. And we’re not.”

We want you to nominate someone you think is going to be making a difference in 2020. Find out more about how to put the most inspiring thinkers, agitators and innovators forward for our top 100 here.

Illustration: Matthew Brazier