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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THT/IWPN Funding Announcement 

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I am delighted that the Terrence Higgins Trust through the Lighthouse Fund are partnering with iwantPrEPnow to offer a more structured and robust online and telephone support service to people accessing PrEP or interested in PrEP.

Personally, this modest funding marks the end of my “PrEP in the wild” days. This project will allow me to make working on PrEP my paid job. We still need to secure some further funding to enable it to become my full time job but at least now I can put in place some firm working hours and a manageable workload. This project will put the focus back on the work and highlight the work that still needs to be done to secure a full and equitable PrEP provision in the UK and beyond.

We begin planning this week. As well as online support (virtual clinic) we will be organising a series of events to outreach to other disproportionately affected and at-risk communities that have not been as equally represented thus far. These events will aim to educate and support.

I’m looking forward to working on PrEP in a more formalised setting.

Greg Owen

Co-founder

iwantPrEPnow

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

 

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”

HEP C – and you

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HEP C (also known as HCV ie HEPATITIS C VIRUS)

I asked a cross section of 50 of my Facebook friends the following questions…

  1. How you feel about HEP C?
  2. How you would feel if you caught it?
  3. Do you know anyone who has it?
  4. Would you sleep with someone who told you they have it?
  5. Would you tell your family and friends if you caught it?

I also requested that they didn’t google or research it.

I was interested in honest, unprepared answers and opinions including those that were uniformed or based on stigma. On the whole the general responses were the same. It didn’t seem to matter who I was speaking to.

In broad terms almost all 50 people said that if they met someone they really liked who had HEP C or if their partner contracted it during their relationship then they would find a way to make it work.

They all suggested that they would learn more about HEP C and how it is passed on, what the infection risks were and keep themselves and their partner safe and healthy.

This struck a chord with me.

It made me look at the data a little more carefully. General knowledge of the virus did vary significant from the various different types of people I asked.

Not surprisingly gay men were more clued up about HEP C facts than any other group.

Also HIV positive men seem to also have a good understanding of HEP C facts. From further research I learned that there are a lot of ‘co-infected’ guys out there (guys who are both HIV and HEP C positive) there is no link to suggest that HIV positive people are more susceptible to catching HEP C. There is evidence however to suggest that these figures go hand in hand as HIV positive guys have regular blood tests which test for HEP C as standard.

Apparently there are twice as many people in the UK living with HEP C as are living with HIV.

We just don’t know it yet because they aren’t being tested therefore aren’t being diagnosed and in very basic terms may still be passing on the virus. This poses a very real and serious public health concern.

What interested me most about the apparent willingness to self-educated ones self on the A-Z of HEP C if ‘a partner or someone I really liked’ caught it was that as people and especially gay men we are so capable of doing a bit of research and taking precautions to keep ourselves safe and protected if it is spurred on by a love for someone else but we can’t seem to get clued up and take these precautions for the love of our own selves?

While it is indeed heartwarming that there is that compassion out there, it is slightly concerning that people aren’t being smart or kind with themselves first. And of course there is a difference between negotiating HEP C within a relationship and negotiating it with a random fuck off Grindr. And here is where stigma rears its ugly, bastard head once again. A significant proportion of gay men will drop another guy straight away if the guy either discloses that he is HEP C positive or if the guy had disclosed and it’s worked it’s way through the gay grapevine.

One young guy I spoke to who is co-infected explained to me that his HIV is rarely a problem but telling people he has HEP C has pretty much destroyed his sex life. No one will have sex with him.

And this really hit home for me and most likely all of you reading this. As gay men (rightly or wrongly) so much of our lifestyle and some of our self worth is based on our sexiness and our confidence levels are kept high by being reminded that we are sexy and desirable…you only have to look at the amount of time wasting, ego hungry guys on Grindr that are on there for nothing more than to watch their inbox light up with the “you’re hot” reassurances.

So HEP C it seems can really fuck a guy up…sexually, socially, emotionally and mentally – long before it will medically or physically.

But don’t despair guys, this is not a doom and gloom story. It is however a situation that requires a bit of work…from us all!

Let me break it down for you in simple pieces so we’re all on the same page.

1 – there is existing treatment(s) for HEP C. It’s called Interferon (plus a handful of other drugs that sometimes go along with Interferon). These treatments do work but not in everyone and not in all cases and it comes jam packed with a long list of ACTUAL, not possible but actual and unpleasant the side effects. It isn’t so good for people living with or prone to meant health problems either.

2 – there is a new treatment/cure for HEP C called HARVONI or Sofosbuvir. Pamela Anderson has just announced she has been cured using this treatment. This is where part of the work is required.  is new and not available to everyone through the NHS yet. In fact it is really only available (again through a fight) to the most ill and dying. There is a case to argue that if you are HEP C positive you shouldn’t have to wait until your liver is damaged or littered with tumours before you get access to this drug.

This drug is expensive. It was originally pitched to the NHS at a cost of £50k to treat a single person.

It is almost 100% effective in almost 100% of people with little to no side effects and can cure you in 3-4 months. There are a few drug interaction issues with people on HIV meds but these can be addressed and worked around. I personally have spoken with 2 co-infected guys that are now on HARVONI. So there is a solution.

3 – regardless if you are HEP C positive or HEP C negative…HEP IS YOUR ISSUE! I’ll explain. It seems that most people don’t bother to educate themselves on HEP C, risks of transmission, impact onto health and treatments available until they actually have HEP C (as is the case with HIV too) but look at it like this…if there are all these people out there that have HEP C and don’t know or do know but can’t access the new drug to get cured then your chances of catching HEP C are high and higher than any of us currently know. But by encouraging people to get tested and be responsible and safe or get the new drug HARVONI / Sofosbuvir and get cured then the number of people out there with HEP C who are able to pass it on is reduced and therefore your likelihood of ever catching HEP C is also reduced in accordance.

It’s called ‘Treatment as Prevention’

And it’s the strongest case we have to argue and push for the new drug to be made available to EVERYONE – IMMEDIATELY. Extending that concept…if there is a cure that is available TO EVERYONE and isn’t very taxing on the body. Then the comfort of this knowledge should surely help us to reduce the fear and stigma of HEP C. That is if we choose to, we first of all have to be open, supportive and kind to each other, empowering us all to get tested regularly, to get treated early and to keep each other safe and happy.

Like I said – this is not a doom and gloom story…but it is a situation that requires us all to put a bit of work in!

Look after yourself and look after your mates…’mates-mates’ or ‘play-mates’ show them all some love and consideration equally.

Stay happy . Stay healthy Continue reading “HEP C – and you”

INTERVIEW: Sherry Vine on her Truvada parody

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New York based drag artist Sherry Vine released an unapologetic ‘no holes barred’ musical parody about PrEP and boy did she split opinions!

Her opening lines are

Hey all of you gays.

Dont be so be depressed, missed out on the days when they had bareback sex.

You want to experience au-naturel anal play?

Well now you can throw all of those condoms away.

Just take a Truvada.

Here is her video. And we brought her some of your questions…

We got in touch with the Tinkerbell of Truvada and asked her to spill the beans…

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What are your personal views on PrEP?

I want to begin this discussion by saying we are neither condoning nor condemning but merely starting a conversation as refracted through our specific brand of (whacky) humor.

You have certainly split opinions within the PrEP community. Was that your intention?

We had no intention of doing something simply for shock value… and believe it or not I wanted to do something that wasn’t about sucking cock or poop and had a little more substance than the majority of the videos I have done.

A few people have commented on the video’s apparent lack of diversity and representation of people from minority groups can you discuss?

Well, those people should go back and look again. Other than me (a middle-aged Jewish man in a dress) the rest of the cast is actually diverse.  50% of the guys in the video are people of color.  And to that point, this video was made on a shoe-string budget in a small corner of the world and cannot under any circumstances be all things to all people regarding this very massive issue of HIV/AIDS & PrEP.

How did you construct this piece? Was there a lot of medical research involved?

Yes. I researched PrEP on the internet (and if it was on the internet it must be true, right?!)  But in all seriousness, I sit on the Board of Directors of The Research Foundation to Cure AIDS (RFTCA) and this has been part of our on-going discussion.

Beyond laughter, what was your goal in producing the video and in hindsight do you feel you accomplished it?

I felt passionate about the topic and as I stated above, I wanted to start a conversation and I guess, since you are asking me these questions, it has.

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Do you think this piece glorifies or promotes bareback sex?

Oh my God, I hope not.

Have you come up against much backlash?

I actually expected more. The majority of the comments and feedback have been overwhelmingly positive and many people have actually thanked us for doing it.

What were your reasons for doing it?

Again, as I said above I wanted to do a piece about something that was important and being of a certain age and watching my friends die of AIDS this is clearly a very important topic not just to me, but to all of us. The queens need to be aware that this is a multi-faceted issue.  If there is any hint of skepticism (which we did not intentionally infuse into the video) it comes from my own personal question around anything that seems like a ‘magic bullet.’

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Who are your inspirations?

It literally changes daily.  Constants are any/all the ladies of rock… Debbie Harry, Siouxsie Sioux, Pat Benetar and of course my biggest influence, Carol Burnett.

What are your thoughts on the changing face of the gay scene since the explosion of hook up apps?

Go for it. If I were 20 years younger I would be on them too.  The only aspect I don’t appreciate is when they are sitting in the front row of my show on Grindr and Scruff. Lol.

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Do you see yourself as a role model, and if so what would you like people to take from your work?

No, I do not see myself as role model.  And all I want is for people to laugh.  Take a break from life and laugh… and sometimes (like with this video) think a bit.

Some of our buddies who are quite visible within the PrEP community think it’s brilliantly funny, cheeky and very well put together. A  few have commented that the great thing about the video is it’s all true and perhaps that’s why people criticize it. Except for the organ failure – which isn’t a thing. They’d like to know why did you include that when the rest is so clever and factual?

First of all, I am a drag queen not a physician.

However, it is listed as a possible side effect.

http://www.ehealthme.com/ds/truvada/multi-organ+failure

Are you a natural blonde?

There is absolutely nothing natural about Sherry Vine.

Would you say you identify more with Madonna or Courtney Love?

 

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Sherry identifies with both!

How will you contribute to world peace?

The ICSPM… the International Cock Sucking Peacekeeping Mission

What’s your message to Vladimir Putin?

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Putin Girl, relax.

Donald Trump’s hair! And go….

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Mr. Trump, please take a trip to Wigs Plus on 14th street and tell them Sherry sent you.

Do you think your video will trivialise the serious conversations around PReP which are hitting headlines at the moment?

Nope. It shouldn’t effect anything. It should (or rather could be) used as a catalyst for further conversation, discussion and education. The video does not say to take it or not to take it… It’s looking at all angles.

From a purely musical perspective this may seem a good way to challenge prejudices but do you think in some quarters this will only enhance stereotypes of gay men who bareback and further divide the community?

I don’t think of LGBT or MSM as one single all encompassing community.  It is a large population of people and as such (although the video deals specifically with gay men) like HIV/AIDS, the access to, use of and education around PrEP is a global issue. 

Do you think major HIV/AIDS organisations will agree with messages about throwing away condoms in favor of PrEP?

That is not the message!  Part of the tone and sense of humor is satirical and ironic.  I, personally, am in no way saying to throw away condoms.  In fact, my understanding is that the safest most effective way to reduce chance of transmission is the combo of condoms and PrEP.

So there you have it folks! Miss Sherry Vine laid bare. Her objective was to raise awareness and encourage dialogue. On those fronts I think she certainly succeeded!

Follow Sherry on Twitter @MissSherryVine

Continue reading “INTERVIEW: Sherry Vine on her Truvada parody”