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

 

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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”

PrEP ain’t for you…or is it?

 

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Jake: I just wanted to ask a PrEP question.

Greg Owen: www.iwantprepnow.co.uk If it’s not on there I’ve failed. lol

Jake: You didn’t fail but I want an answer in slightly more detail. Event based PrEP. Say someone like me who never has unprotected sex… and I can’t remember the last time I slept with someone who didn’t know their qualified status… I don’t want or need to take PrEP. But say I wanted to try unprotected sex with my boyfriend or someone else on one occasion… so taking PrEP just when I needed it. Is this safe? Is it enough to stay neg. I just read all the options… and you say that taking a pill a day is the safest.

Greg Owen: I have a burden of responsibility to actively promote the safest – ie large study (PROUD) tried and tested daily method. That is why it is positioned like that on the site. The EBD (event based dosing) system has been trialled in France. It is called IPERGAY and yes – it is safe. Official figures suggest 86% reduced risk of HIV infection. However there are variables with this method and so therefore requires a conversation like this so that the PrEP user can be educated properly.

I don’t have capacity to do that with everyone and I really would want to because this method opens up the possibility of risks. I hate the word risk used alongside the word PrEP. The variables are the time between 1st dosing and actual sexual interaction (because studies and tests have found that there is not sufficient HIV protection in the anal tissue until about 8 hours after the 1st dose of PrEP) and you also need to address and fully understand doseage etc and by that I mean the number of pills taken, when and duration. And some people say that the study was based on the minimum amount of time and PrEP required for protection so you could expand on your protection by increasing the time between the 1st dose and sex and the length of time you dose after the sex.

The problem I have with this is that info gets relayed from gay to gay and gets muddled in the middle – a bit like chinese whispers. That makes me uncomfortable when the thing being jeopardised is a person’s HIV negative status.

Jake: I’ll refer other gays to your website – I promise.

Greg Owen: I don’t go into these details on the IWPN site for that reason. At the point when it becomes technical and requires someone of authority to advise on this method we direct our users to their local sexual health clinic to discuss it face to face with a clinician. You are a friend , someone I know personally which is why I am discussing it now.

Back to the point… with event based dosing you don’t have that 100% peace of mind that comes with daily PrEP. So in a way you are running the HIV gauntlet again and that negates one of the key benefits of PrEP. But EBD/IPERGAY is a tried and tested method and the whole point of what I do is to share information and although I don’t personally feel comfortable promoting this method of using PrEP, it still offers protection (up to 86% if used properly) that might very well work for someone and so I put it out there.

I guess it boils down to this – any HIV protection is better than none.

But for you Jake – I don’t think PrEP is perhaps the best thing. It’s people who are already involving themselves in high risk behaviour that need to think about it imminently.

If you like using a condom every time you have sex – stick with it. It’s working for you. 

Don’t muddle it. You have good condom adherence. I’m happy that is the case with you. I would be conflicted in advocating PrEP for you if it were to potentially diminsh your condom use.

Jake: Of course. That’s how I feel. It’s not an issue for me. But I’ve never had unprotected sex with my boyfriend. Just thought it might be nice to try. We both think that we’re negative and of course we both need to get tested. But it would be reassuring for both of us if we also did PrEP.

Greg Owen: I disagree. If that really is the case then you don’t need PrEP. Unless you – or you suspect your boyfriend is having BB sex and not being honest about it. If you aren’t and you trust he isn’t…get tested (full screening) and go for it. You really need to weigh up the landscape on a person (or couple) specific basis. If you don’t trust him and don’t wanna discuss that within your relationship there is another option. You can take PrEP on an EBD/IPERGAY system and just don’t tell him.

PrEP empowers the individual.

Jake: He’s not having BB sex. And he doesn’t lie to me. There’s absolutely no reason for him to lie because we’re totally open. That’s the sole purpose of having an open relationship, so that we don’t have to tell lies.

Greg Owen: If that’s how it works in your open relationship I’m happy for you. That is not the way it works in all open relationships.

Jake: Really?

Greg Owen: Yes – from my personal experience and from what I have ascertained through discussing sex and sexual behaviour with many different types of guys in various different situations.

Jake: Why not?

Greg Owen: I’m generalising now but here we go –

Gay men LIE (some not all)
Gay men take risks (most not all)
Gay men do not tell their boyfriends any of the above (some not all)

Also – I can’t imagine you would be too happy informing your boyfriend that you have had sex with me – a HIV positive guy. Protected or not, undetectable or not. You might not feel 100% comfortable telling him this and I understand that.

Jake: But that’s the structure of my relationship. We said we didn’t want any lies or games. So we’re open from the outset and we’re totally honest. It really works. I don’t understand being open and then lying about being open. Makes no sense.

Greg Owen: I agree Jake but you can only be accountable for yourself. You cannot control or dictate what another person does. Regardless if you have made an agreement or not. If your relationship is structured and works like that I am happy for you both. I’m just saying that some people find certain topics difficult to discuss with their partner. That’s why I mentioned the HIV thing as an example. You in effect removed his choice of introducing HIV into his sex life.

Jake: I totally don’t understand what you’ve just said to me. Introducing HIV to our relationship?

Greg Owen: My point is that some guys wouldn’t sleep with a positive guy and that is totally cool with me. If your boyfriend wouldn’t sleep with a positive guy – if that is just one of his sexual boundries and then you sleep with me as an extra in your open relationship, in effect you introduced HIV or more specifically a HIV positive sexual partner into the mix and I don’t think that’s 100% fair. You took a little bit of his choice away. Of course we are speaking hypothetically here as I don’t know your boyfriend or his opinions or prefernces on HIV positive sexual partners. But I find that when it comes to HIV – even though it’s ME that is positive and not you or your boyfriend, we all still need to mindful and considerate towards each other and that extends to how your boyfriend would feel about you having sex with a positive guy ie me. Regardless if you were at risk or not – which you weren’t because I’m undetectable and we wore condoms. I’m just saying some guys dont like it. And that’s not some strange manifestation of internalised HIV shame on my part. I have none. It’s just being considerate towards other people’s feelings. That’s all. I’m just trying to illustrate a point. Sometimes what we get up to in our sex lives isn’t always easy to discuss with one another for a lot of very understandable reasons.

Jake: Well, as I demonstrated. I’m not like that. But I might be introducing HIV every single time I have sex with another man. If I
sleep with a guy who doesn’t know his status though… which is more dangerous.

Greg Owen: Bingo! But an undiagnosed guy is not stigmatised. Even though 80% of new HIV infections come from undiagnosed ‘negative’ guys. You are preaching to the converted.

Let’s put it this way… when I was HIV negative I happily slept with HIV positive guys that I knew were undetectable and who I knew well enough to know that they took their meds regularly and I was even aware enough to try not to put myself in that position on the Tuesday after a Bank Holiday weekend when a HIV positive guy might have been out partying and high since Friday and not taken his meds for 3-4 days therefore resulting in a viral spike above the (generally accepted) 400 mark which starts to become HIV infectious again. I KNEW all of this stuff and I played by those rules ‘most’ of the time but I also slept with other ‘negative’ guys who were ‘definitely sure’ they were negative. I knew the risks and I took them. I’ve told you I can’t pin down the point when I contracted HIV but what I can categorically tell you is this….

I did not get HIV from a HIV positive guy…. I got HIV from a HIV negative guy!

Of course the exchange was from a person that had the virus in their system and technically was HIV positive but there is no doubt in my mind that he was still under the illusion that he was HIV negative.

So I get you. xx

Continue reading “PrEP ain’t for you…or is it?”

The Year of No Fear – HIV today

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What does it mean to be HIV positive today?  

I was diagnosed on 12 August this year and I was lucky. I was diagnosed in what I call ‘the year of no fear’.

Thanks to the PARTNER study and the PROUD study our HIV status, be it positive or negative has less potential to polarize and divide us. The PARTNER study showed that condoms were no longer needed to prevent HIV transmission so long as the HIV positive person had an undetectable viral load on HIV treatment (ART). The PROUD study showed that HIV negative men taking daily PrEP (Pre-Exposure Prophylaxis) were protected against HIV transmission, again even without condoms. For the first time in 30 years we truly have the opportunity to live and thrive as HIV equals.

So I was diagnosed as HIV positive and publicly disclosed my status immediately because I felt empowered by this knowledge and fearless because of these studies. Sure, there would be social hurdles but that’s the amazing part – I’m not a Scientist or a Doctor. They have done their bit by affording me these comforts. Now it’s my turn to do my bit. I’m just an everyday person with no clinical background but what I can do is change people and their preconceptions. I can – we all can.

But the opportunities expand well beyond just deconstructing stigma and establishing equality. We now also have the chance to start winning the fight against HIV and AIDS. It’s time to look to San Francisco for the beacon of hope and pioneering example.

San Francisco is the only city that have stabilised their number of new HIV infections. In the last 3 years they have delivered a 30% reduction. The reasons why are simple. TasP (Treatment as Prevention) where anyone diagnosed with HIV is on effective ART (Antiretroviral Therapy) and are therefore undetectable and non-infectious, combined with PrEP for HIV negative people. 

Always seemingly a step ahead, San Francisco embarked on their RAPID initiative, involving 39 men from July 2014 to December 2014, which implemented a process of treatment at point of diagnosis. This in effect speeded up the process of beginning ART (Antiretroviral Therapy), preventing people from falling out of the system by collapsing some of the steps of the care continuum. Thus reducing the window of onward transmission from infectious newly diagnosed patients.

In the UK the clinical benefits of earlier treatment were shown in an international study called START. It is undoubtedly one of the most important HIV studies of the last decade. It was designed to look at the benefits and risks of early HIV treatment (ART). The results were both exciting and reassuring for people living with HIV today. The following is from HIV i-Base.

Main findings include:

  • HIV treatment was safe for people starting HIV meds with a high CD4 count. Many people in START had a CD4 count above 800.
  • Early treatment led to fewer serious AIDS-related illnesses, even at high CD4 counts.
  • The biggest [negative/general health] impact from early treatment was expected to be on illnesses like heart, liver and kidney disease and some non-AIDS cancers. The opposite was true in that early ART reduced HIV-related illnesses. This is big news.
  • The results were similar in both low- and high-income countries. This should result in making HIV treatment more available in all countries.

Secondly, the results show that benefits of treatment and prevention overlap. Other studies have proven that treatment dramatically reduces HIV transmission. Now people using treatment as prevention (TasP) will know there are direct benefits for their own personal health as well as that of the community.

Ultimately, it’s not about us and our generation. I have two 5 year old nephews and I would love to think that by the time they are in their 20’s that we will have managed to reduce our number of new HIV infections in the UK to such a low level that neither of them need ever worry about contracting HIV as I have. It is for them and our children that we need to take responsibility and action now!

We need to manage and reduce this country’s alarming and unacceptably high number of new HIV infections. Let us put the focus back on the AIDS crisis. There is still an AIDS crisis. Not in this country, here in the UK we have a ‘new HIV infections’ issue – not an AIDS crisis. But in sub-Saharan Africa and even as close by as Eastern Europe and Russia they still have an AIDS crisis.

Our brothers and sisters before us did not die of AIDS so that we could become complacent with HIV and allow ourselves to be immersed in AIDS apathy. It started with them, it can end with us. We have the tools to stop and end HIV and AIDS. We need to use them. 

We can’t allow our privileges to diminish our responsibilities in this global healthcare issue.

Continue reading “The Year of No Fear – HIV today”

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”

INTERVIEW: A&U magazine speaks to GREG OWEN – The guy behind Equals=Equals

Hi Greg.

Thanks for taking the time to speak with our readers, most of whom are HIV-aware and involved in some kind of advocacy.

First, could you provide a short bio? What’s your advocacy background and anything else you’d like our readers to know about you?

I arrived at this point in my life, not through measured choice, I suppose I’m trying to make lemonade out of lemons. My life took a series of very unexpected turns. At the time, certainly not for the better, when the pain of that subsided and it started to hurt less and I began to find my feet… I decided to take ownership of things. Which has taken the shape of me fighting back, mainly against HIV and AIDS and the stigmas surrounding both. On my Facebook and Twitter I’ve had some lovely messages of “support and admiration” for my “bravery”. But I really can’t take credit for being “brave”. I’m just fighting back as much for me and my soul as for our positive friends and indeed our negative ones too.

What are the effects of HIV stigma, as you understand them?

HIV stigma and its impact, in my opinion is the root cause of the continued rising spike in new HIV transmissions among those HIV ‘hot spot groups’ that we are already aware of, i.e. gay men living in fast paced urban areas. But we’re now seeing a rising spike in various other demographics, like heterosexual women in the 50+ age bracket. The reason I attribute stigma as being at the core of this is because we’re all conditioned to believe that none of us should even be talking about sex, even though all of us are having sex. Somehow, even admitting that you’ve had a HIV test implies that you’re somehow unclean, dirty, irresponsible and reckless or a biological danger to those you are and have been intimate with.

Thirty-plus years on into the pandemic, HIV stigma persists. Why did you decide to focus on normalizing the conversation around sex and HIV for this social media campaign?

Unless we shock people into being desensitised to HIV we can’t hope to be able to encourage them to test regularly and make testing commonplace, without fear of judgment from others. The key here is that the people most likely to transmit HIV are those that don’t yet know that they’ve contracted it. Therefore, if we’re not testing regularly, diagnosing early and treating effectively – those most likely to pass on the virus, then we have no chance of tipping the scale on this alarming, seemingly relentless rise in new transmissions. Not many people know that we have the tools available now to actually make a huge impact in stopping new HIV transmissions. If you’re positive and on meds, taking them correctly and are undetectable, then it’s practically impossible for you to pass on the virus. In the same thread, those at high risk of HIV infection have access to/or soon will have access to PREP. This reduces the chance of contracting the virus (depending on which study you take your figures from), down to 5% – 15%. So the combination of treatment (for poz guys) and PREP (for neg guys) is a no brainer!

 How did you arrive at “Equals = Equals”?

I just think it works on a lot of levels. Mathematically it kind of works too. If we have something that’s positive, combined with something that’s negative, we neutralize that and they then become equal. And there in itself is a mission statement.

Was there a specific moment that sparked the idea for the campaign or a straw that broke the camel’s back where you said, “Okay, I need to do something”?

Yes, there were several straws and one tired ass camel!!! I suppose it was because I realised that there was sweet FA (Fuck All) that I could do about my life as I knew it, being turned upside down and basically taken away from me. Losing my fiancé and my home because he shut down and couldn’t cope with his recent diagnosis and me remaining negative.

When I accepted that I couldn’t change that. I slowly then began to realise what I could change is the world that he now has to live in as ‘the positive guy’. Being at sex parties or just out socially and bearing witness to some of the vile, heartless, cruel, passive attacks and active bullying that the positive guys around me were dealing with regularly, on a daily basis broke my heart a little bit more. And because my ex and I aren’t in touch anymore, it pained me so deeply to think that he was out there somewhere – alone, on the receiving end of that kind of unacceptable, archaic bullshit. Apologies for my colourful language, I’m Irish, we say it as it is.

What does Phase 2 and 3 involve, or do you want to defer talking about those until later?

I’m happy to chat about them now. I’d just like to take this opportunity to point out that Phase 2 and Phase 3 are hinging on Phase 1 being actioned and completed.

Hopefully the visibility that Phase 1 will create will provide a presence that should be easily approachable and more so easily contactable. Building on this, the ‘Equals=Equals’ Phase 2 will be a ‘drop in and a chat to a mate’ online support offering. Similar to that of an instant messaging service. The time when most people need to reach out and connect with someone that’s not in their inner circle/family/friends/partner or medical professional for advice and support, or just a chat about something non HIV related is in those first few weeks and months after a positive diagnosis, or whilst on PEP awaiting the results of that treatment. Ironically and cruelly, this is also the time when most people do not know who to turn to, or in actual fact have anyone to turn to for that support. They haven’t processed anything comprehensively enough, for them to be fear free enough of those stigmas and labels that will inevitably and irrevocably be thrown at them. This really is a short window period to help these guys and to maybe save a few lives and offer the support that to the best of my knowledge isn’t available, certainly not in this format. I have a Facebook inbox filled with 100’s if not 1000’s of messages back and forth from newly diagnosed guys needing someone to just talk it through with, poz guys that want to touch base about something, neg guys seeking information or advice and mixed status couples too. I can sometimes be online messaging and responding for 4-5hours and anytime of the day and night – luckily I sometimes suffer from insomnia so it’s a welcome distraction! But interacting with these wide range of guys on this level flagged up to me that there is most certainly a need for this kind of support to be made available in an extended, more structured fashion. I am after all only 1 guy on 1 Macbook!

Stage 3 is to build on what we have already achieved and step it up a notch by moving from offering online support to providing a space for people to come and find a sense of community somewhere ‘normal’ for want of a better word. When I say ‘normal’ I mean a place that they can find and invest in a community that is not directly or stereotypically associated with ‘the scene’. Where they can establish and invest in relationships and community – free from any stigma and any judgment. A place to just ‘be’. I think there will be a significant gearshift for Equals=Equals at this point as our focus widens and changes slightly. This kind of project I feel is of particular value to some of the younger community especially from ethnic or religious backgrounds where being gay is not accepted and the concept of them being gay and possibly HIV + would lead to serious repercussions. These are often the life blows that are the triggers for the journey to substance abuse, reckless behaviour, irreparable self-loathing and self-worth issues, and in more extreme cases homelessness and prostitution.

Is this U.K.-only (in terms of mailing out the T-shirts, etc.)?

Nope – the great thing about the T-shirt activity is that we have – or will have a fixed price per unit cost to produce each T-shirt. The only financial impact that we would then have to incorporate when going ‘international’ would be the increase in the cost of postage and packaging. So it is an activity than can be rolled out anywhere. And nothing would please me more than to see all sorts of people supporting this by wearing their Equal=Equals T-shirts, taking their photos and posting them online! In effect putting those 3 letters H. I. V. EVERYWHERE – from The Statue of Liberty to Sydney Opera House to The Great Wall of China and Big Ben!

The last thing I want to say is that although HIV and the impact of HIV bulldozing its way into my life almost ruined me and pushed me to a suicide attempt – thankfully a failed one. I now feel like I/we are already winning! HIV screwed up my life but I fought back with the help and support of friends, family and community. And I look at the all people this activity is already reaching out to and supporting and helping and I can see nothing but positive things! Excuse the pun! Taking ownership of HIV’s presence in my life has allowed us to start to claw back an advantage – even on some small level. For that I am very grateful.

Thanks guys for speaking with me and thanks for supporting Equals=Equals.

Big love.

x

Continue reading “INTERVIEW: A&U magazine speaks to GREG OWEN – The guy behind Equals=Equals”