I’ve been beginning to feel disenfranchised with the larger HIV charities. HIV infection rates are up, community engagement is lacking. But here come the personal activists…

Today, December 1st 2013, is World AIDS Day. In fact it’s the 26th World AIDS Day, the first one took place in 1988.  Many of you reading this wouldn’t have even been born in 1988 – I myself was only three years old, but it’s as valid and necessary today as it was when it first started. Whilst I recognise that World AIDS Day is an international event, for the purpose of this piece (and to not go on forever) I’ll be focusing on the UK.

In 1988 AZT had, just the previous year, been approved for the treatment of HIV. The first drug approved to treat HIV. It’s an unpleasant and highly toxic drug that was initially conceived to treat cancer. People diagnosed HIV-positive back in 1988 were almost certain to progress to AIDS and large swathes of those who did faced an unfortunate and untimely death.

Fast forward 25 years and it’s 2013. People diagnosed HIV-positive in the UK today, assuming that they’re diagnosed reasonably early, can expect to live just as long as their HIV-negative friends. We have excellent understanding of the virus, dozens of treatment options – some just one pill a day and HIV-positive parents can have HIV-negative babies naturally.

But not all is rosy. New HIV infections are, in fact, on the rise in a big way. Last year 6,390 people in the UK were diagnosed HIV-positive, 3,250 of those were MSM (men who have sex with men) – 51% of all HIV diagnoses. That is the highest number of HIV diagnoses recorded, in one year, ever. Let’s just read that again shall we? Twenty odd years on from the “AIDS epidemic” of the 80s and 90s we’re still recording record high levels of new HIV diagnoses.

Some of the increase has been attributed to testing, in fact the number of people tested in 2012 was 13% higher than the previous year. That’s great, an increase in people testing is something we should definitely encourage, but what it’s showing us is that there are even more people out there living with HIV than we’d ever thought. Current figures from Public Health England suggest that there are 100,000 people living with HIV in the UK, but 22,000 of those don’t know that they’re infected.

That means that out of the 100,000 people living with HIV in the UK a whopping 1 in 5 are walking around completely unaware that they’re infected. Some people can live for up to ten years before their health declines are they’re eventually diagnosed – but by this point it can often be too late to help them, all the while they’re passing on the HIV to those that they sleep with. An estimated 80% of all new infections are caused by the 20% who don’t know that they’re infected.

Then there’s stigma. I was diagnosed HIV-positive two and a half years ago and in that time I’ve been unfortunate enough to encounter all manner of stigma. I’ve been shunned by dates, abused on line, berated by HIV/AIDS denialists, insulted by doctors and shamed by GUM advisors. But I think the tide may be starting to turn.

When I took to twitter in August 2011 looking for support after my diagnosis there were almost no publicly positive people. But little by little that’s starting to change. Over the last year or so I’ve seen more and more people, like myself, feeling able to be open about their HIV status online and I feel lucky to consider some of these people friends.

I’ve started, lately, to feel more and more disenfranchised with the big HIV charities. It feels more and more like they’re just pumping out the same tired rhetoric that they have done for years, whilst at the same time managing to engage less and less with the people actually living with HIV. Recently I attended the UK’s biggest HIV conference, I was floored by how few patient or community representatives were actually there – but then I remembered how difficult and convoluted the process to get there was. It was almost like they didn’t want us there.

These charities should be falling over themselves to snap up the new wave of confident and open HIV-positive people online. It’s us using the services, it’s us living with HIV – so surely we should have a say? Surely?

I founded, and run, beyondpositive. We’re run by people living with HIV for people living with HIV. We offer a space for those who feel comfortable talking about their life with HIV to share their story and help others who may be struggling with their new diagnosis or continued life with HIV. It’s proving incredibly popular with the community and more people are adding their stories every day. The HIV charities must be knocking at your door to help support you in running such an invaluable tool I hear you cry, but oddly not. I don’t believe that there’s any malice behind this but more a fundamental disconnect between the charities and the community that they’re there to help. It doesn’t have to be this way.

I sincerely hope that come next World AIDS Day I’ll be able to sat here telling you that things have changed. That we’re seeing better community engagement and that HIV diagnoses are falling. We can but hope eh? Either way we’ll still be here, banging our drums – you can count on that.



  1. Well said Tom. It is truly uplifting to have young people like yourself speaking out openly about living with HIV. Unfortunately up here in Stoke on Trent…I seem to be very much a lone voice. But I have been impressed by the interest taken by local media in the last few years.

    Keep up the good work!


  2. Tom what an excellent and a well written piece,you have managed to put into words what many in HIV community feel, however,are unable to express. You are an inspiration to the young HIV community and put many of us older ones to shame. Well done!!


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