How One HIV-Positive Man, Greg Owen, Became a Global Spokesperson for PrEP
by John Francis Leonard
Photographed Exclusively for A&U by Sean Black
What is that moment like? That moment that you realize that you’re not just an accomplished advocate for a cause you believe in, but that you’ve become its very public face. For Greg Owen, one of the U.K.’s most vocal proponents of PrEP, it was summed up in a recent very humorous and wry Tweet he wrote about no longer being able to hook up anonymously. It seems that all that any guy who he meets online wants to talk about is taking Truvada as a prophylactic. Great news for a cause in which he so passionately believes, but not always the greatest news for his sex life.
Greg grew up the eldest of six children in Belfast, Northern Ireland, at the height of the troubles. He remarks of it now that “my childhood was in the eighties and my teens in the nineties, it was very interesting to say the least.” He left Belfast behind in the summer of ’98 for drama college in London, graduating in ’01. In 2015 he found himself working in various bars and clubs and sleeping on the sofas of various friends. Greg knew many friends who had become positive and was well aware that he himself was at risk and decided to do something.
It all began with a new friend. Alex Craddock had recently returned from the states and filled Greg in on an amazing new prevention tool called PrEP. PrEP is a drug called Truvada, which has long been taken as part of HAART to suppress HIV in those who were already positive. It was now being prescribed as a prophylactic with up to a ninety-nine percent efficacy rate according to the drugmaker’s research, a significant improvement over the condom which can often fail and is not always used. It was a game changer in the U.S., but was not widely available in the U.K. Greg and Alex wanted to change that and started building a website in Alex’s bedroom that would educate people and enable them to obtain the drug privately. That website, IWantPrEPNow.co.uk, launched in 2015 with an initial 400 hits in the first twenty-four hours and the count ballooned from there, eventually being taken under the umbrella of the U.K.’s most prominent AIDS organization, the Terrence Higgins Trust, which provided access to much needed funding as well as legal representation. Due to his subsequent HIV diagnosis, it was too late for the drug to make a difference for Greg, but it ignited a passion. He saw little reason why, with a drug that was almost 100 percent effective in HIV prevention, there should be anyone, man or woman, receiving the diagnosis news he had.
But the drug still had to be obtained by purchasing it through private health insurance, an option not open to many. Britain’s NHS (National Health Service) provides medical care, including prescription drugs, universally. They had begun looking at PrEP in 2014, dragged their feet for two years and finally said no in 2016. They insisted in court that preventative care was the job of local government. Meanwhile, according to the Terrence Higgins Trust, an estimated seventeen people a day were becoming infected with HIV while PrEP was being delayed. PrEP was seen as a “lifestyle drug.” Even some prominent gay men saw HIV only in terms of reckless and irresponsible behavior. Why should government fund £450 a month to prevent it? Things are changing, trials have begun in limited circumstances, but activists like Greg still fight every day. He appears regularly on talk and news shows, informing the public about the fight for a drug that he believes all people should have access to. A documentary about Greg and Alex, and others, The People vs. The NHS: Who Gets the Drugs? aired recently on BBC2. He continues to run I Want PrEP Now and its website, building on its successes and enabling many to access this game-changing preventative care.
The news out of the U.K. concerning HIV and its treatment and transmission is remarkable. According to Public Health England, HIV transmission rates are down by a third nationwide, forty percent in London alone. A large percentage, ninety-six percent of those diagnosed (eighty-seven percent), are on treatment with ninety-four percent of those being virally suppressed. People are accessing testing and treatment in large numbers, but as Greg is the first to admit, it’s a group effort with many coming before him who fought on the front lines for this good news to be possible.
I recently spoke to Greg by phone from his home in London. One of the first things that struck me was the speed at which he talked. But what also struck me was just how much he had to say and the heart-felt passion which he has for the subject of HIV prevention. And it’s this focus on prevention that makes Greg so unique as a positive man. Not only prevention among his own demographic, but prevention amongst all key groups, some of whom aren’t seeing these recent successful numbers.
John Francis Leonard: What were your earliest experiences with HIV/AIDS?
Greg Owen: I tell this story sometimes when I do speaking events. My first memory was as a very camp kid. I used to do my mum’s hair and I did it quite well actually. My mom and dad were talking to my uncle at a family BBQ and somehow that came up in conversation. Someone asked who had done her hair that day and she said that Greg had done it and that maybe he’d be a hairdresser one day. My dad turned to her and barked, no son of mine is going to be a hairdresser and die young. There was a duality to that comment. I was very aware that something wasn’t sitting right with him. First of all the fact that I was gay and effeminate and the second thing, which I didn’t quite understand at the time, that that somehow meant death.
I make a joke of it now, I mean who were all these hairdressers dying of accidents at work? [Laughs.] But obviously he was talking about AIDS. That was the time of Rock Hudson and Freddie Mercury’s fight with the disease. So those are my earliest memories of HIV/AIDS—that my sexuality was very much entrenched in death and infection as far back as I remember. I also share a birthday with the late Princess Diana who had such a hands-on approach to AIDS patients at a time of great fear, so I always took an interest in her.
What brought you to your work in HIV prevention?
Early on, I had wanted to do a campaign about undetectable meaning untransmittable. I wanted to get involved [before my own diagnosis]. It involved people I was close to and people I would see out. I myself was out in and around SoHo, going to sex parties, and I would see a person who was recently diagnosed at one of those parties left alone in a corner or asked to leave the party altogether and my heart would break. Not just for that person, but for the people I loved who were in the same situation. I didn’t expect to become HIV-positive myself and be in the role that I’m in now, but even so all the crossroads in this journey and all the decisions I made made it incredibly personal for me.
Didn’t you initially want to go on PrEP yourself?
Yeah, that’s the whole story and kind of why I ended up as one of the most visible PrEP advocates globally, I guess. I had been looking at things [about PrEP] on Facebook from the States and had been thinking about it in 2014/2015. I was initially going to go to a clinic and use post-exposure prophylaxis (Truvada plus other medication). Then a friend of mine said that he had two months of Truvada [as PrEP] left and that I could have it after I posted on Facebook that I was thinking about PrEP and it was perfect and saved me from lying and getting PEP. I went to pick it up that weekend. Soon after, however, I myself was diagnosed HIV-positive after testing negative just earlier that same year. When I came off PEP, I had thought I was negative, but I came to PrEP just a little too late. [Editor’s note: To use PrEP effectively, it is important to first be tested negative and access it through prescription.]
Even though you yourself are already positive, the biggest drive for you is still prevention. Tell me a little more about your motivation as well as your fight for PrEP in the U.K.
It makes really, really clear sense to me and I think it’s something that a lot of people didn’t get when I first started. It was something that I was driven to do because I found that the situation that I found myself in was needless. It didn’t need to happen. I could see a solution that could prevent transmission, but not for everyone because everyone couldn’t afford to buy PrEP, so it wasn’t equitable. But it seemed to be the only solution when nothing else was on the table—so I acted out of necessity. So for me, it’s not a even a case of the fact that I myself can’t take it.
Also, what people didn’t get when I first started was that if you become HIV-positive, why would you not want to help other people to prevent the same thing happening to themselves? That was something that jarred me, that people would be surprised that this is my focus. But the important thing is that above and beyond the fact that this drug can prevent people from becoming HIV-positive, is that it reduces stigma. And if we’re reducing stigma and starting to have these conversations to remove this divide, and that’s the progression within our community—then it would make sense that in the general community, sexual, social and mental health would increase as well. I don’t see one standing in isolation of the other. It’s all part and parcel of the same package in addition to U=U [Undetectable=Untransmittable]. I have the access to incredible medication, which is lifesaving treatment, due to the people who came before me. So it makes sense to pay that forward myself. That’s why I do what I do.
With PrEP and U=U, the battle against HIV/AIDS has changed, what are your thoughts about that and why are condoms still such a sticking point for some people?
I hate that conversation about condoms! In the absence of any viable alternative, you really have to drive home the one tool we can use. Abstinence doesn’t work [because sexual people eventually have sex] and monogamy, if it even exists, is flawed, so we need to be real. The only tool in our hands and the only tool we could see in our hands during the sex we were having and the sex we were accountable for was the condom. So in the absence of any viable alternative, of course, condoms had to be emphasized and of course people had to modify their behavior. But I have a real problem with that because people didn’t always want to use those tools. Now that there’s a viable alternative, where we find ourselves [with PEP and PrEP] is in a biomedical age of HIV prevention. We have the tools and can have those conversations in our communities, with each other, and with our health care providers. And also, I think that if we instill in ourselves that condoms are the only safe way to have sex we are asking a generation, and I’m talking specifically about gay men now (particularly my own generation and above who lived through the actual trauma of a plague), to un-think everything they learned in a climate of fear and death to start to unlearn those things. Asking them to really get their heads around that. Then it’s not surprising that there’s pushback because generally most people act out of what they think is right or good. They’re behaving in a way that they think is the right way to behave. You’re almost asking people to go against what they feel is the right thing to do and that’s going to take some time and effort. But it’s not helped by muddying the conversation by always talking about other STIs or by always bringing morality, judgment, or sexual behavior into it. We need to separate that into two different conversations.
What do you see as the future of HIV care and prevention looking like? What are we looking at now as opposed to ten, twenty years ago?
I can tell you what is different now and I can tell you what I think is going to be different in the very near future. I’m new to this sector. I’m paying my dues to the people who came before me when there was no hope and nothing much to hope for. They did their best in very trying circumstances. We’re only beginning to see effective HIV treatment and prevention. Not too many years ago, we were seeing HIV rates rise and that’s changing now, changing quite rapidly. But the change is being driven by a decrease among gay and bisexual men, but not all gay and bisexual men, so there’s a huge inequity still there. The interesting thing for me, being the new kid on the block, is that this inequity thing is historical; it’s not going to be a quick fix, but that doesn’t mean that we don’t have the responsibility to fix it. The epidemic is about to change. That inequity is among black gay and bisexual men—they’re fifteen times more likely to be infected. But we have access to free healthcare here. In the States it might be driven by financial situations or access to insurance, even geographical concerns. But here in the U.K., we don’t have that excuse. It’s free healthcare to anyone who chooses to access it, so it’s definitely something cultural. It’s there for everyone and it’s our job to make sure everyone gets that care.
There’s a real problem here with late diagnosis and the black, African, heterosexual community is within that demographic. In the future, if we continue to see the drops in MSM over the coming years our jobs will still be really hard. It’s suddenly going to be an epidemic for women and people who have heterosexual sex who aren’t aware of the risks. It’s going to be much harder to target those groups and cost a lot more money and be a lot more resource heavy. But I think our work will change from quantity into quality. There’s going to need to be some very, very targeted work. And again, it’s not necessarily work that a white, cis, HIV-positive gay man should be doing for people who aren’t like me, but I’m happy to mentor and share knowledge and support. But these are the kind of campaigns and projects that need to be run and delivered by the people who they’re for. There’s only so much I can do. But I think that in the U.K. we’re at the cusp of the epidemic changing so it would make sense for us to invest in those other groups and those other communities and do some of that highly targeted work now so we’re ready when things do change in the very near future.
How is the battle with the NHS and full coverage of PrEP going? I know this has been a major focus for you and your organization.
Oh God! I just can’t! [Heavy sigh.] I’ve made a lot of noise, but I can’t take all the credit for that. There’s been a lot of effort including legal action. In Scotland, PrEP is free to anyone who needs it. In Wales, it’s an uncapped trial.
First of all, in Scotland, it’s only available in sexual health clinics, and we know here in England that women don’t really access those. So until it’s integrated into G.P. [general practitioner] services, reproductive health, and drug and alcohol treatment, it won’t make a difference. It’s the same in Wales. There’s no cap, but there are huge waiting lists for PrEP. In Northern Ireland there’s a trial, but again, you can only access it in one place and in one hospital. That’s a four or five-hour car ride every month for a lot of people. In England, we’re turning gay and bisexual men away from clinics with no PrEP and we know of many men becoming positive either because they couldn’t get it in time or they were turned away because there were no spaces. It’s a total mess. There are many men self-sourcing, many out of social conscience because they can afford it, so we don’t actually see accurate sales figures. But still many men can’t get on the trial and can’t afford to buy it themselves. In a nutshell, it’s a hot mess, makes no sense to me, and I could scream most of the time.
John Francis Leonard interviewed writer and producer Our Lady J for the November cover story.