2015 has been quite a year. A brilliant year of developments on PrEP (HIV prevention) and deconstructing HIV stigma.
It hasn’t been an easy year by any stretch of the imagination and I’ve had a few personal curve balls thrown in for good measure. But such is life.
I want to take a moment to look back on our progress particularly in the PrEP arena.
At the start of 2015 there was a considerable amount of noise being made in the US by Damon L Jacobs and his facebook crew of PrEPsters in the PrEP Facts:Rethinking HIV Prevention group. This family of HIV prevention enthusiasts, users and advocates is currently sitting at a substantial tally of 12,500 people. The group’s significance within and contribution to the PrEP community even caught the attention of WHO (World Health Organisation) this year.
But here in the UK it didn’t seem like we were making that much noise at all. There were a few random mentions from scene magazines and the odd share of an article here and there. I shared and posted as much as I could find and it was being well received as a concept.
I felt reassured that PrEP would catch on here in the UK when it was made available. I was perhaps a little too naive in making that presumption at that point. In hindsight, it was being well received as a concept because it was nothing more than that.
A concept. Not a practice or an option that was available or likely to be available in the near future.
I know this now…but I didn’t know it back then. Discovering hostility towards PrEP was unexpected and came with a hefty emotional price tag for me.
My own PrEP journey was a very short lived one indeed! Late one Tuesday evening (11th Aug). I managed to get hold of 2 months of Truvada from a HIV positive friend who had changed his meds. I decided that I would document my experience, every sexual encounter, chill out, sex party and screen for STIs every month for 6 months and write my Truvada Diary.
The next morning I hopped on a bus to Dean Street Express to have a HIV test to confirm that I was HIV negative (last tested negative Easter 2014) 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 that put an end to my PrEP diary. Instead I began writing my diagnosis diaries – This is Me part 1, part 2 and part 3.
My public disclosure on social media and the subsequent publishing of my diaries raised my visibility and awareness of PrEP and the immediate necessity for it so much that I just couldn’t cope with the amount of enquiries that I would receive on Facebook, Twitter and email.
This is when the option of importing generic PrEP was brought to my attention and really took hold. After a few
discussions with my buddy Alex Craddock and meetings some knowledgeable friends, the idea for www.iwantPrEPnow.co.uk was born.
We were going to build a website with all of the info you needed on PrEP and with links to buy genuine and legitimate generic PrEP from trusted sellers. We knew the website would take us about 4-5 weeks to build in our free time so we set about that with immediate effect.
What I identified I could do in the interim between that point and our launch was to raise awareness and test the waters. I want to gauge exactly what the feeling towards PrEP was.
We would be making access to PrEP a reality and not just raising awareness of some unobtainable new HIV prevention concept.
The reaction was not what I expected and not what I wanted to deal with at that time in my life but there wasn’t much choice.
PrEP was being smacked down quite regularly and quite aggressively.
Here I was, a very newly diagnosed HIV positive gay guy being berated and attacked for pushing for PrEP.
It was a little heartbreaking.
Why couldn’t these people see the potential of PrEP?
Why were they so averse to the idea?
I realised I had to reconcile that within myself and find a way to relate and connect to these people. The solution presented itself quite clearly and promptly. Just be honest. Just tell your story.
No one wants to catch HIV. There is a tool that is almost 100% effective at protecting you from HIV.
I managed to get hold of it. But I was a few months too late. Just state the situation and leave it there.
It seemed to work.
I was also aware that people don’t like to read pieces of text. Especially on something they are not too interested in. So I went with some very simple, very basic images. I am no graphic designer! These memes were created on an app on my iPhone. And here they are…
It passed by without too much controversy. That wasn’t to last! Next up was a play on Apple’s incredibly irritating auto-correct of the work fuck to duck! If you use the word fuck as much as I do then this little text amend is DUCKING annoying…
Again, I thought this was palatable. It’s a blue duck – who can have an issue with that? Quite a few people it would seem! Instantly the cries sprang up of
“Are you saying we should abandon condoms?”
“This is totally irresponsible and reckless of you”
“You are sending out the wrong message here Greg”
“What about other STIs. PrEP doesn’t protect you from those”
I wasn’t really prepared for that reaction and I hadn’t formulated a response. Little did I know that a few short months later I would be so sick and infuriated by that ‘other STIs’ question that I would have lost my patience and found the balls to write an article titled ‘Fuck other STIs’. But at that moment it shook me a little so I tried to dampen the argument with this.
It immediately silenced those critics. So we were learning and we were on to something. By introducing the word ‘extra’ into the positioning of PrEP we could get people to start thinking about PrEP itself and not what using it implied – ie abandoning condoms. I tested it out with the next image.
This one went down really well! The very same people who were busting my ass over the barebacking rubber duck were now on board and thanking me for behaving responsibly with a healthy and inclusive message. So I took it a step further.
Then I put PrEP in the tool kit.
It seemed too simple but it really was that straight forward. Use the word ‘extra’. Make PrEP an additional tool and position it with condoms – not instead of. People stopped trying to run me out of town! But again, I had a feeling that would be short lived. We hadn’t introduced the sexual element yet. So I ran with this.
As expected the pitch forks came out again.
What is it with people in the UK and the horror that sets in when something appears to be sexual? I’m still getting my head around that one.
But now the comments coming in were accusing me of trivialising safer sex by releasing the sexy Smurfs. In fact that couldn’t be further from the truth. PrEP is HIV safer sex. So is condomless sex with a HIV positive undetectable guy.
At that point I realised that I wasn’t ever going to be able to please everyone. So I stopped trying.
And that was liberating! For the sake of the objective at hand I decided to revert (temporarily) to inoffensive, non-sexual subject matter.
The lightbulb was safe and for some reason people liked it. It’s one of my least favorites. I had given up trying to predict what would and would not be received well! The watch was up next.
When this image went out on Twitter a good friend and colleague from a HIV charity tweeted me to say that he loved the image but that it was factually incorrect.
PrEP is not here as it is not accessible yet.
Little did he know that in a few weeks PrEP would be here and accessible through www.iwantprepnow.co.uk – admitedly not for free but it was here! The images were getting a fair amount of attention now and I started getting requests. Here are a few of the requests.
I know this tag line is from Sesame Street but it kind of worked here.
Who knew gay men loved The Smurfs, The Muppets and Sesame Street?
And it was no surprise that the Diva went down well!
Then I changed the direction slightly as the reaction towards PrEP warmed.
This next image has the wrong tag line again – my mistake. ‘You Got a Friend in Me’ is from Toy Story. The song from Aladdin is ‘You Ain’t Never Had a Friend Like Me’. I didn’t think it was that big of a deal until I happened to catch Aladdin on television a few days ago and watched Genie and Aladdin in that number and in fact – you ain’t never had a friend like PrEP!
The set isn’t complete without drawing a little attention to slut shaming….
And realising that the way a person chooses to protect themselves from whatever is and always should be totally their choice and they should be fully supported in the choices they make for themselves.
Recently I have been able to release a few images that need no disclaimers or pacifiers.
It’s nice to see David Cameron get involved with PrEP…
And push it real good…
The website www.iwantPrEPnow.co.uk has even been discussed at BHIVA by Dr Mags Portman.
At BHIVA’s European HIV Hepatitis Co-infection (EHHC) Conference by Dr Andrew Hill.
In my opinion this year has seen the UK MSM community stop slut shaming and challenging the benefits of PrEP. In the summer most of my conversations about PrEP were loaded with shaming, ridicule, dismissiveness, divisive statements, fear, resistance and a lack of knowledge.
Today with just 2 weeks left of 2015 I can tell you that the amount of interaction and conversations I have with people about PrEP has more than doubled – perhaps even tripled.
Now those conversations are predominantly from people wanting PrEP now with well constructed questions on the finer details and specifics of being on PrEP or preparing to start PrEP.
This is amazing. We have turned a corner and the road ahead looks promising. 2016 is going to be a very exciting year.
Merry Christmas and a happy new year!