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.”

#TasP vs #PrEP


I have a few issues with treatment as prevention (TasP). More specifically I have issues with Public Health England trying to pass off the recent drop in HIV as predominantly due to TasP and other mutlifactorial approaches including more regular HIV testing. I have issue with this for several reasons. Here they are:
In the U.K. we have excellent free HIV care. We treat people living with HIV because we have to – otherwise we’d die. Simples. But when I start seeing bodies like PHE tagging substantial drops in HIV to TasP over PrEP my bullshit alert goes into overdrive. We have to treat people living with HIV or we’d die, I’ve said that already but how convenient is it for people managing budgets to then attribute drops in diagnoses to this ‘treatment’ – VERY! If you can spin this shit you remove the need for an appropriate prevention budget/spend. Which hasn’t been upscaled in years as it is. It was lacking years ago – it’s even more lacking today. I’m not buying that. And I will challenge anyone who tries to spin this. 

Then by focusing on TasP rather than PrEP we are ignoring a very key fact. The HIV epidemic in the U.K. is not being driven by HIV+ people. Let me explain, the majority of people diagnosed with HIV in the UK are on treatment and virally suppressed. We’re talking 80%-95% depending on which aspects you look at. That means that HIV in this country is being driven by “HIV negative” people. Or more accurately people who have seroconverted since their last HIV test and are unaware. I saw some data over the last few days that suggested the average HIV test lapse times are 2 years. Treatment as prevention is not gonna help here! PrEP will! PrEP is and PrEP scaled up WILL!
Then there is this suggestion with a focus on TasP that us people living with HIV are somehow responsible for managing HIV prevention for our sexual networks and our communities- WE ARE NOT! Our treatment needs to be first of all seen and respected as treatment. NOT PREVENTION. It is each HIV negative person’s responsibility to maintain their HIV negative status. I say that as a person living with HIV who embraces and encourages TasP but also as my former HIV negative self too. It was always my responsibility. It is yours too. 
And on the topic of more regular HIV testing for super high at-risk people! Wise up! If you gave these people PrEP you wouldn’t need this!! We could then focus on other STIs and actually we could maybe focus on other stuff above and beyond “disease” and “infection” and “prevention” and “risk” we could actually maybe start to look at the person and ask about feelings and worth and HEALTH. 
Finally all this only works for people linking into care. What we have done here in the U.K. with self sourcing PrEP is we have created a community health care system. I genuinely believe we are reaching people who can’t or don’t want to link into care. This is a double edged sword. It creates as many concerns as it does reassurances. But ultimately we are missing an opportunity here. Online and self managed sexual health is they way forward. It is the ONLY way some people will be able to or want to engage with sexual health. Why are we not building on this?

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.

SIGN UP FOR TRIAL UPDATES

Click here for NHS England statement

Twitter: @Greg0wen

 

Fragile and Fabulous

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Hola

It’s been a while since I wrote something. So here we go. Let’s jump right in.

Today I had a Facebook messenger chat with a very lovely friend. My friend who we will call Jay for the purpose of this article expressed that they were in an episode of painful anxiety. Our conversation progressed and Jay was clearly anxious about being anxious and afraid to ask for help.

I was really touched that Jay was being so brave as to admit that they were struggling. It’s really important for Jay to maintain a buoyant level of mental health for work and also we ALL need that just to function the way we want.

The overriding tone of the conversation was:

“I know I am struggling”

 

“I know I need help”

 

“I’m afraid to ask for help and I’m afraid to even talk about this”

 

“The stigma surrounding mental health is crippling”

 

I think we can distill that last comment down to a universal:

 

“The stigma surrounding any taboo issue is crippling for anyone experiencing that issue”

 

One thing I have learned over my 36 years and particularly over the last year is that no one likes or responds well to being ‘told’ what they ‘should’ do. I actively try my hardest not to use the word ‘should’ or instruct people. Instead I find asking questions and sharing my own experiences are the best I can offer.

I realised that I was going to take a plunge here with Jay.

I was sectioned a few years ago.

There you go. I said it.

I could hear how frightened Jay was to ask for help and I was trying to explain that the alternative to asking for help (as difficult as asking might be) is always worse. I figured that in a round about way not sharing my own history of bumpy mental health was in effect compounding the issue currently being faced by Jay and by many other LGBTQI people in the same situation as Jay.

So let’s just talk about that whole ‘being sectioned’ thing.

I talk about a lot of very personal things. But disclosing that I had being sectioned, until today, was not something that I was comfortable discussing.

Very few people know I went through that experience and it is probably one of the very few things in my life that I have (had) shame about. I’m using had in brackets because part of this disclosure is an attempt to alleviate that shame. I was also embarrassed about the experience and I was worried that people would judge me. I was concerned that people would observe me differently and perceive my current actions today through the tint of ‘mentally unwell’. Mental health is fluid.

I think I have arrived at a point now in my life where I don’t give a shit about that anymore. I simply don’t care about what other people think of me and what my lived experience has been. I cannot change it. Sometimes life is a bit shit. I can tell you this though: opening up and sharing and discussing the shitty bits of your life when you think they might be of use or comfort to your friends really does help take the sting out of the shit.

Here’s the story as an overview….

I was in a very toxic relationship and found myself on the receiving end of quite a lot of mental and emotional abuse…the abuse wasn’t limited to that…it became physical abuse and in one particularly bad episode I sustained a broken collar bone which required surgery and some metal work. A hook, a plate and 3 screws to join the collar bone back to the shoulder.

Even at the hospital I wouldn’t admit to what was going on and covered for him. Social services were alerted despite my protests and again I lied to them.

In the run up to this I had being lying to everyone around me so much that I became exhausted lying and just hid myself away from friends and family so I wouldn’t have to waste my energy lying.

A dangerous position to put yourself in if you are experiencing domestic abuse!

When I was released from hospital the next day after my surgery I was in an excruciating amount of pain. I went to my doctor and was prescribed Tramadol. Then a whole load of shitty things happened.

I think in a nutshell I just broke.

 

I didn’t sleep for 4 days as I was having what I suspect was anxiety driven gastro problems and was throwing up every hour or so. I didn’t react too well to the Tramadol either. In fact the Tramadol lowered my epileptic threshold and I had a seizure on day 5. I don’t remember any of it.

I woke up in Guys and St Thomas, again in agony. The lactic acid in my muscles from the seizure felt as though I’d been hit by a truck. I had also broken one of my front teeth/veneers.

I was still unbelievably trying to front the whole “I’m OK” routine. I quite obviously was as far from OK as you can be!

And I was about to get a whole lot less OK!!!!

At that time I had a severe phobia of sorts of hospitals. My brother lost both of his legs in Afghanistan in the February of that year (2011). My fracture and seizure occurred in the December of the same year and I associated any hospital or clinic with the trauma of going through that experience with my brother. At first sitting with him in critical condition in the ICU and then the even more intense experience of finding myself on a whole ward with other very young men (100’s) all in a similar or worse condition than my brother. It was extreme.

So to wake up and find myself bedridden in a hospital was breaking point. A few hours after waking up I started to experience post seizure psychosis. On reflection, it was much more. It was the start of a total breakdown.

The psychosis and paranoia got rapidly worse and things escalated very quickly. I tried to leave the hospital was but restrained by 2 security guards. I was dripping with sweat and trembling. I was contained in a psychiatrist’s office while a 2nd psychiatrist was summoned from another ward or hospital to approve my being sectioned under the mental health act. It requires 2 doctors to do this.

I was then sedated and sent via ambulance to Lambeth Hospital. To wake up in a psychiatric ward was possibly one of the most terrifying experiences of my life!

I was so fucking confused and I remembered only flashes of what had happened and I couldn’t tell if my recollections were dreams or reality. Incredibly frightening.

I know we are not supposed to use the word ‘crazy’ as it is a stigmatising word. But all I could think of as soon as I was aware enough is….I am not crazy.

I was on the ward for about 5 days. The details of those 5 days are a bit too much for this article. Suffice to say it was not an enjoyable 5 days. And I was still fronting. Every visiting session with my family and my fiance or the consultants were spent convincing them that I was OK. At that point though it was survival instinct. Anything to speed up my discharge. Of course none of those people were buying my act. In fact the quote that sticks in my head from one of the doctors was

“Yes, he is making a great recovery and seems to be displaying signs of his true personality and person. He is getting better but he is displaying signs of being ‘a little too well’. He does seems to be an ‘other people focused person’. He is expressing distress at having put his family and partner through this experience. It this usual for him?”

 

So I wasn’t fooling anyone. I’m going to wrap up this piece now. I’ve had a sudden pang of reconnecting with the intense emotion of that experience.

This is kind of a cautionary tale I suppose but more than that, it is a message. Do not be afraid to ask for help.

Do not be afraid to say “I’m not OK right now and I’m struggling”.

It has taken me a long time to learn how to say those words and ask for help. I haven’t fully arrived there yet but I’m getting there.

I will end with the scholarly words of Jessie J.

“It’s OK not to be OK”

 

Thank you Jay for inspiring me to be a little more honest today. x

 

 

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”

Order PrEP t-shirts

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I have created this post with links to buy our PrEP t-shirts in the interim to our shop feature launching on the new iwantPrEPnow which will be live in the next few weeks.

Very straight forward system.

Step 1:  Select the style you would like (the only colour available is black).

Select the size you would like and send those details to this email address iwantprepnow.co.uk@gmail.com

Include your postal address and the name that appears on the PayPal account you will be using.

Step 2: Click here to be directed to our donate button where you can make your payment.

I have kept the pricing really simple.

  • £20 per t-shirt
  • £25 per item on t-shirt dresses (women style option 3 and 4)
  • Plus £2 P&P (UK) or £5 outside UK

 

All options (only available in black)

 

Mens/unisex

 

Style ref: Men 1 

Size: S/M/L/XL/XXL

Price £20

basic boy

Fabric weight: 190 gsm

Material: 100% ringspun semi-combed cotton.

Fitted cut. Taped back neck. Ribbed collar. Twin needle stitching. Unbranded size label at neckline.

Style ref: Men 2 (in black)

Size: S/M/L/XL/XXL

Price £20

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Fabric weight: 150 gsm
Material: 100% ringspun semi-combed cotton.

Taped back neck. Tubular knit. Rib neckline and armholes. Twin needle stitching.

Womens

 

Style ref: Women 1 (in black)

Size: XS/S/M/L/XL/XXL

Price £20

w1

Fabric weight: 165 gsm
Material: 96% cotton/4% elastane single jersey.*

Stretch fabric for a modern fit. Enzyme wash. Soft feel. Single jersey. Longer length. Soft stretchy ribbed collar. Twin needle stitching.

Style ref: Women 2

Size: S/M/L/XL

Price £20

w2

Fabric weight: 145 gsm
Material: 100% combed ringspun cotton.*

  • Relaxed fit.
  • Longer body length.
  • Side seams.
  • Twin needle hem.

Style ref: Women 3

Size: S/M/L/XL

Price £25

w3

Fabric weight: 110 gsm
Material: 100% ringspun cotton

  • Taped back neck
  • Self fabric wide neckline
  • Kimono sleeves
  • Longer body length
  • Twin needle sleeves and hem

Style ref: Women 4

Size: S/M/L/XL

Price £25

w4

Fabric weight: 180 gsm
Material: 100% cotton.

  • Single jersey
  • Scoop neck
  • Cover stitched sleeves and hem

 

I will place the print run with the printers once I have 20 orders. Delivery time (to you) approx 3-4 weeks.

Greg