“My own PrEP journey was a very short lived one indeed,” Greg Owen, aged 35, tells me. Along with his friend Alex Craddock, Owen has created the website iwantprepnow.co.uk, which aims to collect all the information people need to understand and start taking Truvada, the daily prevention pill that protects gay men from contracting HIV when they practice condomless sex.
It all started one evening last year, when Owen managed to get hold of two months supply of Truvada from a HIV positive friend who had changed his medication. “I decided that I would document my experience: every sexual encounter, chill-out, sex party and screen for STIs every month, for six months, and write my Truvada diary,” he explains. But then something life changing happened: “The next morning I hopped on a bus to have a HIV test to confirm that I was negative. I had written the opening section of my PrEP journey by the time I had arrived at the clinic. 20 minutes later I was diagnosed as HIV positive. The irony! So I started a HIV diary instead.”
Owen’s subsequently brave disclosure of his status on social media led to a slew of enquiries about PrEP. He and Craddock responded by setting up their website. In the US there had been much in the media about Truvada, but little noise had been made about it in the UK. The two men were on a mission to raise awareness about what they saw as a revolutionary drug. “We’ve now started asking the important question...Why have we still not got PrEP on the UK's National Health Service? What is the real issue here? Gay men have gone out there, found the information they needed, educated themselves and each other on PrEP and its benefits. There’s a real demand for it.”
Truvada is already available in the US, and people are able to claim through their medical insurance and the Gilead co-pay scheme, but it is not available in most other EU countries (except France). In Germany and the Netherlands there are restrictions on importing generic versions of the pill. Consequently, people are importing their PrEP to the UK and then travelling to collect it or arranging to have it forwarded on.
Feedback from iwantprepnow.co.uk has been so good that several high profile UK sexual health centres are about to begin collecting information from their patients who are buying generic PrEP online,” Owen tells me.
This info will include the specific online seller, ease of obtaining orders and most importantly a record of the efficacy of these generic drugs being purchased through TDM (Therapeutic Drug Monitoring) - a blood test that measures the level of drugs (active protection) in a patient’s system. The information will be fed back to Owen and Craddock, thereby allowing them to offer their site users a constantly reviewed reassurance when purchasing through their listed sellers.
There is no doubt in Owen’s mind: PrEP is “a game changing HIV prevention tool.” But it also comes with much controversy. Users have frequently - and publicly - been labelled ‘Truvada Whores’, with critics of the drug claiming that it encourages irresponsible sexual behaviour. Has Owen encountered any hostility?
“Yes. I remember one guy in particular who jumped on one of my conversations on Facebook and accused me of 'just wanting an excuse to bareback'. You can imagine my reaction...He was PrEP shaming, slut shaming and bareback shaming me. He hadn't quite grasped that it is too late for me to take PrEP, and didn't know that I'm HIV positive. When I told him that I'm positive his whole attitude changed. Suddenly I was allowed to promote and push for PrEP because it wouldn't make me personally start to, or have found an 'excuse to bareback.’”
Owen firmly believes that these kind of reactions must always be challenged - but he goes further: “We need to start to try to unlearn everything we were forced to learn in fear during the AIDS days of the 1980s and start to put those concepts and emotional reactions to bed now.”
Re-thinking sexual behaviour in a rapidly changing landscape is imperative, he stresses: “This is about what safer sex and HIV prevention is today, in 2016 - not what it was 30 years ago, or even just five years ago.
“It's complex, it's a big ask,” he concedes, “but I believe we can do it. And it starts with this...The moment you are about to judge another person or shame them - just stop. Don't do it. Instead of telling people what they should and shouldn't do sexually, instead simply ask them what they actually, honestly do sexually.”
I point out that while PrEP protects against HIV, it does not prevent other sexual infections - which are rising dramatically among men who have sex with men.
“Other STIs have been increasing steadily since the mid 90s,” he replies, stating that I should read his blog for his feelings on this topic. I am directed towards an article, which clearly states that “PrEP is designed and is amazingly effective at protecting you from HIV – nothing else.” He concludes by saying: “So please stop and think about this before screaming about ‘other STI’s’ when discussing PrEP. In my experience people who want PrEP don’t want it to START barebacking – they want it because they ALREADY ARE barebacking.”
But what is his personal attitude towards condom use, I press. Is this method of “safer sex” now outdated? Have people told him that they would prefer the alternative offered by PrEP?
“This is a tricky one. I'm conflicted. I have had to toe the line with debate and watch what I say so much over the last year, in particular because I am so closely associated with PrEP here in the UK - because PrEP and getting people to think about it and accept it was my priority, I've had to act within what is best for the campaign.
“I really think that it's very personal and should be assessed, discussed and decided upon on a person and situation specific basis. Personally, I will always want the person/people I am having sex with to be comfortable and at ease. If that means wearing a condom then that's cool. If it means no condom then it's a decision we make together.”
Encouraging an open and frank discussion around these issues is vital for Owen. The profile of iwantprepnow.co.uk is now so prominent that Owen and Craddock will be attending an international conference on HIV treatment and prevention in Brussels at the end of this month. “We will be trying to work with people across Europe and the rest of the world this year to offer support and try to help make PrEP available anywhere that it's wanted or needed,” he adds. “It's going to be a busy year!”
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