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

 

Protest of the Protest at Pride London

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Ok. I am not going to wade into this whole situation and involve myself in an ongoing back and forth as I am too busy actually working on a cohesive, focused and productive project for the provision of PrEP in the UK.

I will however make this statement and my opinion and position on this situation very clear!

I cannot support and will not condone this planned protest against Pride London.

I am so sick and tired of seeing sloppy protests for the sake of protest with no actual results. I question all of this. The intentions behind it, the drive to do it and the benefits (if any) to anyone.

This kind of ‘activism’ reminds me of puppies. You leave them alone in the house while you go to work and you come home to find they have shit all over the place. And they just sit there in the shit and mess and look at you. But that is puppies and they are cute and eventually they grow out of it.

Now that is not to say I am against protests. Far from it. But protests with a bit of focus and that get results.

When I see people ‘support’ or ‘protest’ a million causes I just shake my head! To me it just smacks of a lack of sincerity, a lack of authenticity, a lack of genuineness, a lack of personal identity, a lack of awareness and most of all a lack of focus.

And then I wonder why? Why are you doing this? I am looking on and just seeing these kinds of people pop up at this and that and post pictures of ‘look at me doing this’ or ‘look at me doing that’ – I am not fucking interested in YOU. You don’t need to try so hard!

I would much rather see your work and the results.

Let those speak for themselves. Get out of the way. YOU are not the important part of the equation. That is called ego. It is self-serving and self-indulgent and in fact it is the height of hypocrisy! Something you should be against.

As for protests. YES. Let’s protest like mad! I support protesting. I support it when it is needed. For example, for the jungle in Calais. Against neo-Nazi fascists. Calling out NHS England over PrEP. I use these 3 examples for a reason, if you physically can’t be in a place where people need our help or our actions then we should do all we can and protest here and where ever else we can and there in those places if we can get there. If you are faced with a group who want to literally kill you or an organisation that refuses to interact with you – you need to fucking protest.

You need to challenge this.

But your own community? For London Pride? Really? You think that is the right thing to do? An attack on a community event? YOUR community? That you are a part of? That you belong to? Is it not a much more positive thing to work with community members and leaders to actively create something that we are all proud of – together?

It is so ill thought out. And arrogant. And narrow minded.

Recently, I have been labelled an activist.

I hated the label! I rallied against it until I got tired asking to be called something else. I don’t identify as an activist because a handful of visible ‘activists’ give activism a bad image. I’m bored of it now.

 Let me just point out though that although I now accept that I am in fact an activist, do you know how I arrived here? What my first steps into involving myself with my community were?

Surprise, surprise as a volunteer/host for Pride in London!

If you are so fucking clueless that you can’t see that attacking Pride is cutting you off from the future and from those that are either just discovering our community or re-connecting with it then you need to wake up!

Our community has struggled enough of late with vanishing venues and a diminished sense of the ‘need’ for a community. Are you seriously going to try to attack the biggest gay day of the year here in the UK? Oh yes of course you are…because that is the best way for YOU to get some attention and further your own self-obsessed agenda!

Listen, I don’t disagree with a lot of the issues you have with ‘what Pride is today’. The corporate pink washing etc. But tackle those things not Pride. Organise your own event to address these. Or is it easier for you just to hijack other people’s events and momentum?

I can’t make myself any clearer. You need to take a fucking seat. Or here’s an idea…why don’t you FOCUS on what you are meant to stand for and what we desperately need now which is a strong, well organised HIV/AIDS activism group to tackle pharma and drug access, healthcare inequalities or heaven forbid focus some of that fucking energy on PrEP! On that you have been VERY lacking!

If this sounds harsh or confrontational then good! It is meant to be. We can ALL protest when something pisses us off so much that staying silent is no longer an option. I have just arrived at that point with YOU. Consider this the start of the protest against the protest. And prepare yourself. You haven’t seen me fight yet. If you want to experience that then carry on. But I’ll give you a tip. You are going to need to up your fucking game!

Don’t bother with the social media circus either. I’m not interested in it. I’ve said my piece and now I am fucking off out of this pathetic, petty, attention seeking stunt. Hopefully you’ll see a bit of sense or take a reality check at least!

With love and quite a lot of anger…

Greg Continue reading “Protest of the Protest at Pride London”

AIDS SHITS AND GIGGLES

Let’s Talk About Gay Sex and Drugs – ALIENS

Act Up London are an AIDS activist group billed on their facebook page as a diverse, non-partisan group of individuals united in anger and committed to direct action to end the HIV pandemic. Until recently AIDS activism was an ‘alien’ concept to me. However far from being the ‘angry’ bunch of individuals that I was expecting to encounter at this group, they were warm, open, welcoming and fun if not regularly fucking hilarious!

Last Tuesday afternoon on a mere 2 hours sleep after working all night at Popcorn at Heaven, I wearily made my way to Angel for the Act Up summer fair at the Positively UK offices. To say that I was less than my bouncy, usual self is an understatement. I was pro-actively 30 mins early for the 3pm kick off. As I posted my obligatory check in and promotional post on facebook, Dan Glass replied to the thread to let me know he was going to be fashionably late by about 20 mins so it was looking like the day was going to be a longer, more draining ball buster than it was already feeling like.

My brother had arranged to join the event after work to catch up with me and get a glimpse into what his ‘Social Outlier’ big bro actually got up to at these intriguingly ‘alien’ aids shin digs!

Towards the end of the meeting, after my brother a few other latecomers arrived and joined us, Dan Glass decided to throw another one of his impromptu icebreaker activities of name and statement rounds. The theme of this round was “state your name and something that no one else here knows about you”…

This is where hilarity broke out! I honestly almost pissed myself laughing…leading me seamlessly on to shit…Yes, shit. Tom our wonderfully fabulous cis-male joker proceeded to tell a story of when he found himself in KFC in Hackney – bursting for a poo that he had been in labour with all day. He deposited said poo in the KFC toilets, which he then tried to flush away. However the gods of the porcelain bowl were against him and the poo refused to go! So he flushed again further filling the blocked loo causing the monster poo to float up and over the toilet rim and land firmly at this feet – which he now takes the time to point out were dressed in 6 inch stilettos, below his ra-ra skirt! In a panic he decided to take action and leave the KFC, however as he opened the door the poo decided that it wasn’t ready to say goodbye to Tom just yet and surfed out of the loo and onto the main floor of the restaurant alongside six and a half foot Tom in heels and a ra-ra skirt!

Tom’s shit story seemed to have totally broken the ice beyond all expectation and we quickly arrived at sexual tales of the most graphic and amusing nature.

We soon arrived at my brother’s moment to share his name and chosen story, I was starting to feel nervous and uncomfortable! And I think he knew…He begins….

“Hi everybody, I’m Brendan and I’m Greg’s brother. And eh…I’m straight….And…”

He was then greeted with the not too unexpected heckles of “Ah ha!?” “Uh Hum!?” “Yeah! OK GUUUURL”

He continued “ Yeah so….I’m not really sure how sexual to go here…I have some right WRONG stories…but I dunno…”

I think the chorus then pitched in ad-libs to the effect of “go on straight boy…get nasty” and “wrong is always right gurl”

He continued…”Eh? Greg?”

I then shared a story about my brother that I maybe shouldn’t have but that was right for the moment and that he was gracious and sporting enough to allow me to tell. Bless him, I loved him for jumping in at the deep end so unconditionally and I was so proud of him holding his own and shining in a world so alien to him.

So as to keep with the tone and the theme of unapologetic sexual confessions…I admitted or bragged actually, to the group that I can suck my own dick… Which luckily I didn’t discover I could do until about 2 years ago…Otherwise I would never have got an education, got a job or left the fucking house! Mind you, though no one in THAT particular room knew this self-sucking selling point, a good proportion of Grindr and South London’s sex party fraternity DO!

Stepping into an arena that is alien and embracing people that may seem alien to us can reward us with the greatest gifts sometimes. Regardless of what gender we are, what colour, what religion, what sexual orientation or what status. Alien to each other or not, we are all joined by common ground by sex and sexuality. The ability to love and the need for love and of course the joy of being able to laugh with and at each other.

AIDS IS NOT ALIEN!

Thank you

*The audience then applauded

One more thing guys…I asked Pat Cash for 20 seconds more to speak with you after I finished my piece. He very kindly allowed me that extra time. That’s like gold dust at these events so I’ll crack on. I just wanted to take a moment to point out why groups like Act Up and events like  this are so import for us right now.

I had managed to source some Truvada to use as Prep that I was due to start taking this weekend. Now I’m well enough clued up on Prep to know that before you start taking it you need to make sure you are definitely HIV negative so you don’t cause yourself problems with creating drug resistance issues by taking Truvada if you are positive and don’t know it. So off I went to Dean Street to take my test to confirm I was negative so I could start taking the meds that would KEEP me negative. 20 mins after arriving at the clinic yesterday – I was diagnosed as HIV positive. The irony is not lost on me. This is why us coming together and sharing and making changes in our world is so important. Prep needs to be made available to everyone and now!!! So someone else doesn’t find themselves in my shoes.

I wore this vest for a reason…

hiv front HIV back

Last week this vest was ironic – this week it’s uniform.

STAND TOGETHER – MAKE A DIFFERENCE

Thank you

Continue reading “AIDS SHITS AND GIGGLES”