PrEP4love: rebuilding a community

PrEP4love

(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

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Continue reading “PrEP4love: rebuilding a community”

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HEP C – and you

hepatitis-c-paper

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”