My response to The Irish Times PrEP piece

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On Thursday 20 April The Irish Times published an article Anti-HIV Drug Removes Personal Responsibility

This article was positioned as an opinion piece and one thing we can be sure of is that opinions have no place and hold no authority over facts based evidence. Presenting accurate facts and providing an opinion based on those facts is fully acceptable but this article failed to deliver that.

Several HIV experts and organisations including Professor Chloe Orkin for BHIVA and Dr Paddy Mallon for UCD School of Medicine have already highlighted the inaccuracies and errors in the very damaging statements made by the journalist.

I will be speaking from a community perspective. As co-founder of the world’s highest traffic and most widely used PrEP website, I am dismayed that a publication such as The Irish Times would run such a piece. As an advocate and activist who identifies as a gay man I accept that our community and its members will have differences of opinions on PrEP, HIV prevention and sexual health initiatives. It is concerning that rather than reach out and share learnings and experiences this journalist instead chose to write what appears to be a click bait vanity piece. This is not responsible. This is not community. This is not healthy. This is not contributing anything of worth to the debate.

Fear based messaging has never worked. It will never work. No one responds well to being judged, shamed or blamed. To further muddy the waters and confuse sound HIV prevention with moralising and toxic internalised personal issues is damaging and indicative of a lack of understand of self and of the complexities of gay life and sexuality on a community wide level.

“What I fear at the moment is a resurgence of the old “gay plague” rhetoric of the 1980s whereby gay and bisexual men are viewed as irresponsible and apathetic in relation to their sexual health.
What PrEP is in danger of promoting, in my view, is a policy of play now, pay later which the gay population can ill afford to embrace.”

We really need to work on deconstructing this concept that at some point we will “pay” for being gay. Being LGBT+ is not wrong. Living as our true authentic selves and all that comes with that, including enjoying the sex we choose is not something we are ‘afforded’ that must be charged back to us at some point. It is what we deserve. We are different as LGBT+ folk but we are not ‘less’. Different does not mean we aren’t equal.

Setting up arguments like these about “being responsible” creates a double bind. The notion that if I get HIV I’m irresponsible, if I try to prevent myself from getting HIV (using THE most effective method) I’m irresponsible.

And as if to clarify completely for anyone who is unsure: the journalist’s closing paragraph is a total contradiction in itself and of his entire ‘opinion’.

“The danger lies in transferring responsibility for risky sexual practices on to a tiny pill taken once a day rather than making informed choices and encouraging a culture of prevention rather than cure.”

I second Professor Chloe Orkin’s proposal below:

“I therefore propose that we [BHIVA] submit for publication a letter of clarification to better inform your readership of the latest evidence and guidance around PrEP.”

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NHS to fund PrEP for 10,000 people

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I’ve been inundated with lovely, supportive messages and congratulations all night and all morning.

There are a lot of questions about this PrEP implementation study that people quite rightly would like answers to.

The leading question at the moment is “Why do we need another trial?”

It’s a very valid and justified question and indeed echos what I have been screaming most of this year. This study will investigate how we put PrEP to use in a real life setting as a national public health intervention. Previous studies like PROUD and IPERGAY helped us understand that PrEP works really well, if taken as instructed.

This trial is about how we roll PrEP out.

My initial reaction was: It’s a start.

It’s not ideal but it’s a start.

I welcomed the announcement but I feel the need to publicly ask more questions because ultimately it means that we still have no proper PrEP commission for 3 years and the rest of the world is looking to us so we need to keep them and their agendas in the equation too.

I want to see something built into this that really tackles and addresses inequalities and recruits those that really need PrEP but aren’t able to afford it or don’t know about it.

What inevitably will happen is a mass migration of PROUD study participants and those users currently self-sourcing or utilising PEP as PrEP to populate this allocation. I’m committed to not further perpetuating the health and HIV prevention inequalities of other at risk groups outside of London and urban MSM (men who have sex with men).

I want a dedicated focus on BAME (black and minority ethnic groups) and trans* people.

I also want a clearly laid out and confirmed willingness from NHS England and Public Health England to proactively review this trial after 12 months with a view to finding budget for an additional contingency of a further 5000 (or more) participants. What I don’t want is to find ourselves 18 months in and at our capacity and then having to get into the whole wrangle, negotiating, feet dragging and complacency yet again. That would really stall the momentum that we will have gathered.

I think 10,000 participants is better than what was originally offered in the spring but we can always do more. Australia have expanded their PrEP trials. This can be done.

As a result of this provision we are going to see the number of new HIV diagnoses drop, of that there is no doubt. What I don’t want to happen at that point is for the focus to then shift to those achievements and ‘laurel resting’ to begin. Instead it should be an incentive and motivation to do more.

This announcement feels like a change in gear. It feels like an investment in actually trying to end new HIV infections in the UK instead of what we have previously seen from our health care system which has been lack lustre firefighting and band aid prevention.

I want NHS England to commit to a full commission by the end of this trail now so that we don’t have a repeat of what we saw with PROUD and their participants being exited from a study with no further access to PrEP. This needs to be in place and functioning long before the end of this trial so we have a seamless crossover for participants.

Those are my initial thoughts. I am meeting with our steering group and the larger United4PrEP coalition group this week and we will have plenty to discuss. I will update you all with more information when it is available.

iwantPrEPnow and PrEPster are fully committed to working with NHS England and Public Health England to make the best of this opportunity and we hope to be closely involved with the planning and workings of this trial.

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Click here for NHS England statement

Twitter: @Greg0wen

 

Don’t let the silence do the talking

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Today was a weird day.

I have grown incredibly attached (emotionally I guess) to someone lately. That was very unexpected for me. The guy has a boyfriend. We are friends. It was safe for me to grow fond of him because there wasn’t much at risk, or so I thought. I was kind of aware that we have been pretty inseparable and to date we have not had a fall out. A few disagreements – yes but a very symbiotic dynamic which gives full licence to both to pull the other up when he is misbehaving or making less than ideal choices. Until today…

He was pissed off with his boyfriend (rightly or wrongly) it isn’t my business nor my place to get involved. But it was incredibly uncomfortable for me to spend time in their company when my friend was giving his boyfriend the silent treatment. I had a bout of the giggles. Not because I thought it was funny or was belittling their situation but because I was nervous, anxious and uncomfortable.

I was suddenly reminded and almost transported back to my younger days and particularly my teens being subjected to my parent’s quite toxic and often vicious, damaging and destructive behaviour towards one another.

I pulled my usual ‘fixer’ moves of trying to cajole my friend into a brighter more jovial mood while it was just him and I and before his boyfriend returned to join us for dinner. Trying to make light of the tension and pandering to my friend’s mood. Hey! We’ve all been there! When we just want to make a retaliation of some sort to ease our rage. But my friend went on the proper silent treatment! Literally being asked a question and blanking the enquiring party.

I cannot tell you how utterly, cripplingly, uncomfortable this makes me. I then got caught in the crossfire of a scenario that was totally of my own creation but that I quite honestly did not see as an action that would cause offence or grievance. I borrowed my friend’s phone as my battery had died and I couldn’t be arsed to boot up the laptop. I took a selfie (for a reason) and tweeted it to me from his Twitter. No big deal right? Wrong!

When dinner had ended (I left the table early as the pregnant silences were far too laden in tension for me to bear) I went to the living room to DM said friend on Twitter to ask him if me doing his ironing would cheer him up and snap him out of his mood. Only to find myself blocked from his Twitter and unfriended on Facebook.

It literally felt like a punch in the stomach. An instant dull ache hit me in a really deep part of my gut. I was so confused. It later transpired (after a very heavy handed and unwarranted warning against sending further unauthorised tweets from his phone) that if I did that again I would be permanently blocked. Now usually most of you would expect me to fly into trademark ‘Greg Rage’ and tell him about himself. But instead I was so embarrassed and more so hurt that he would behave like that towards me that I just sat there and took the dressing down and looked at him hoping that he wouldn’t see the flash of red that was now burning my cheeks.

I am totally sure none of this was his intention and knowing that this upset me in this way will probably upset him too. But it made me think. Really think about the cycle of hurt we sometimes get caught up in and how previous emotional scars re-open to bleed even years later.

I spent 7 years with a partner who was irrationally angry and moody far too often and for prolonged periods. Most of these feelings he would direct at me, sometimes directly which wasn’t pleasant but more often passively. This guy (as much as I still love him) had the ability to lower the mood of our whole home without saying a word or without even being in the same room as me. He just had a way of hitting me where it hurt. It wasn’t nice and it broke me a lot more than I realised at the time. My friend’s actions and behaviour today (although nowhere near on the same level or with the same intentions) pulled me right back to that place in my life. I could almost physically feel my past and long since shelved pain and distress again and it freaked me out.

I’m guessing he behaved this way because of something from his past that has informed him to act this way. So I’m not judging him or criticising him. Merely observing that for whatever the reasons from both of our past experiences – today wasn’t a good day.

I am aware and reflective and open enough to notice these things in myself and question them but not everyone is. I was definitely in flight or fight mode as a result of today’s events. Instead I chose neither and opted for silence and avoiding eye contact or further interaction while my emotions settled. That is unusual for me. I’m glad that is what I opted for but the reason I wrote this and the thought that crystalised was this…

What if in these situation we did choose to fight or fly? What further damage does that create and how much does that compound the existing issues and give rise to a cluster of future issues until you have an emotional minefield of issues and triggers to navigate.

The answer and the solution seems quite simple to me. Just to sit down and talk, quietly and graciously. And while I say the solution seems quite simple, I mean that…in so far as the thought…the concept…now putting that into practice is a whole lot harder and takes some balls and some skills and also the knowledge that you are loved and supported and afforded the compassion to be allowed to say you’re pissed off about something or that perhaps you fucked up. That requires trust, kindness and bravery from all parties. Sometimes those things aren’t on offer or aren’t felt enough from and by each other.

I’m sure tomorrow will be a brighter day and I am glad I have somewhere to put my thoughts in order via these posts. That is also something that I find hugely beneficial and productive. Having to think about situations and my feelings in a little more detail in order to structure a decent sentence and blog piece allows me to tidy up my mind (and my heart). I recommend it.

x Continue reading “Don’t let the silence do the talking”

YOU ARE GLASS

Spoken word piece by Greg Owen ‘performed’ at Let’s Talk About Gay Sex And Drugs on Thursday 12th May 2016

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YOU ARE GLASS

 

When first we met, I saw you but I looked right through

You were just there

Standing still

Strong

But a little wrong

I walked past you many times

Until one day

Something I could not feel – pushed me from behind

I saw you right up close. So close  – I only saw the flaws – the bubbles from the blow

I could only see as much of you

As the frame of my own view

But when I backed right off, then I began to notice

Notice the rest of you

Stepped away until I saw the all of you

We never touched

Did not connect

I dared not rest my hand upon the pane

Did not leave the mark of the moisture from the softness of my finger tips

Which were now softer – warmer – wetter than I had ever known before

Now I’m seeing you, not seeing through

The glass is suddenly brand new

I turned my back then turned it back

Now it was not you that I could see

But me

My reflection

There was a  flash

I could only see the light

My eyes began to burn

It was so bright

But I could not turn

And I would not fight

The light began to dim

Refocus my eyes on him

Now all I could see was us

Not a 2 – but a me in you

No force from behind

Shared pull from the front

I approached again

This time I put my tips upon you – so cold

Instinctively contracted back

The composition again – was new

I see the tiny printed dots – my fingers had left on you

I didn’t like the mess –  didn’t like I’d left a mark

So came to you again – to fix the messy smudge

I watched myself grow larger in your reflection until my mouth aligned with the mess

I blew – the intention – hit you

We  clouded up

Gray, steam and heat

I could not see the mess  or us

The heat cooled, retracted in

I watched it shrink and fade and disappear

It all became quite clear

There was – the mess

There was – that part of you

There was…my reflection

And in it all lay us – a possible perfection

It started to look pretty

So I put my fingers on your surface yet again

Saw them leave their mark

It was becoming art

But our creation got too brave – too fast – a little stark

One more reckless swipe

I caught a chip –

Sting

Bleed

Drip

Drip

Fuck!

Trip

Now trip

Fell through

Straight through you

You smashed – I crashed

Right down to the floor

With pieces of you embedded into my flesh

I panicked- what had I done?

Scrambled on my knees

To try to pull all those sparkling shards of you back into one place

I clawed too hard and my fingers bled –

Now part of me streams over the broken pieces of you

Everything was raw and everything was red

I had to stop

I crawled away and slumped

To where I first saw myself in you

But you were no longer there

You were lying bloody on the floor

There was an us no more

Parts of you embedded in my flesh – part of me streaming over the broken pieces of you

YOU ARE GLASS

*I wrote this piece for David Stuart. Thank you for being brilliant! x

Continue reading “YOU ARE GLASS”

Love Love Love

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I’m in love. I’m in love with many things. The renewed and vibrant community that has suddenly sprung up right before my eyes. And the lovely dalliances with  some of my heroes that I recently learned were actually just PEOPLE too. I will not hide that I am talking about David Stuart and Sheena McCormack and Pat Cash, on Pat what a blinder to have a buddy who inspires you from his truth and raw innocence all tainted with naughtiness… WATCH OUT FOR PAT.

I fell in love very recently. I didn’t mean to, I didn’t want to. He has a boyfriend. They live together and they seem happy. It’s an open situation with them. And I celebrate everyone’s own definition of themselves and their love. I honestly really do. But with this situation I had a problem. If I were in an open relationship (FYI – Don’t think I could be….I have insecurity and worth and anxiety issues. I’m not strong enough for that)

 

If I were in an open relationship I think I would be cool with my boyfriend fucking other people. But what I wouldn’t be cool with is my boyfriend developing an emotional attachment and investment in another person. I would be uncomfortable with that. But that is what has happened. We fell asleep on the sofa – this is about heart not cock.

 

I have fallen in love with Pablo. And Pablo isn’t even his real name. I made a choice to hide him from the craziness that is my life right now.

But I fell and I fell hard and why????? I’ll tell you…

 

My heart was wrapped up and hidden away as damaged goods…to be rolled out in a cheap sale…..But then he came along and made my heart dance. Continue reading “Love Love Love”

PrEP4love: rebuilding a community

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(Image credit and campaign link: Chicago PrEP Working Group  www.prep4love.com )

Something has become increasing and beautifully apparent to me over the last 6 months and especially the last week. We have shifted a gear. For a while we lost a sense of our community, our brotherhood, sisterhood, sibling-hood. Regardless how you define our community, what can’t be argued is that we suffered for a while. We kind of lost ourselves and each other.

The reasons why aren’t important but the impact and implications are. I think we became unkind to each other and to ourselves. We are seeing the real-life manifestations of that right now. We are in a painful and dangerous chemsex culture. Our number of new HIV infections are rising. Year after year.

I think we lost a little bit of hope.

But there is new hope, fresh passion and most importantly LOVE. We’ve started to find our way back now. And I have to tell you a part of the catalyst for this inspiring and encouraging shift is PrEP. My experience is this…

WE DIDN’T HAVE MUCH OF A COMMUNITY. We found one online through social media (a new and incredibly powerful new medium for community to thrive) then we actually managed to take that community and those friendships off-line and into real life. What was hugely important was that Pat Cash and David Stuart offered some of us a safe and loving space in the form of their monthly Let’s Talk About Gay Sex and Drugs.

I will tell you how this has all played out for me… when I was diagnosed as HIV positive I refused to suffer in a world I didn’t like and to do so in silence. Instead I saw that PrEP would have as much benefit for me personally as it would for everyone else negative and positive.

What PrEP does is remove the fear.

And without fear stigma starves. And that’s what is starting to happen. Investing in PrEP and my community totally helped me to accept my HIV positive status knowing that it wasn’t gonna kill any bit of me, who, what or how I am.

Today I bumped into 2 PrEP buddies in Brixton. There were lots of warm hugs, plenty of banter and excited and animated talk about PrEP and HIV and our other mates. I was a little overcome. I suddenly realised that I am surrounded by countless gorgeous gay men, not afraid to reach out to each other, not afraid to offer support, not afraid to ask if you are OK, not afraid to say they are scared or in love or having great sex.

This is the kind of amazing sibling love and community spirit that I was surround by in my teenage years. This is what I sorely missed. And I actually cried today. Because this is the community love, respect and sexiness that has returned.

We are not alone.

We are family and we look after our own. But gay men are also great at integrating these days and they have a fair bit of fight and love to extend that approach to everyone. #PrEP4love #whereisPrEP

This blog has been verified by Rise: R245f8c54c83dcbdd55e17e5812b052e2

Continue reading “PrEP4love: rebuilding a community”

PrEP 2015: a very blue year

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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.

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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…

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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…

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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.

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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.

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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.

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Then I put PrEP in the tool kit.

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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.

smurf

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.

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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.

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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.

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I know this tag line is from Sesame Street but it kind of worked here.

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Who knew gay men loved The Smurfs, The Muppets and Sesame Street?

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And it was no surprise that the Diva went down well!

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Then I changed the direction slightly as the reaction towards PrEP warmed.

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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!

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The set isn’t complete without drawing a little attention to slut shaming….

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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.

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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…

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And push it real good…

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The website www.iwantPrEPnow.co.uk has even been discussed at BHIVA by Dr Mags Portman.

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At BHIVA’s European HIV Hepatitis Co-infection (EHHC) Conference by Dr Andrew Hill.

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And most recently Alex Craddock (iwantPrEPnow co-founder) featured on Channel 4 News alongside our PrEP siblings and their site PrEPster

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!

Continue reading “PrEP 2015: a very blue year”