This week I marked, celebrated, honoured – call it what you will – the 30th year since I was diagnosed HIV-positive. On 28 November 1986, at the tender but not-so-innocent age of 17, I got my test results and began a long journey that would witness death, disease, fear, ignorance, stigma, false starts and stops. I’d be part of a community torn apart then brought together for its own survival.
I’ve seen hope and despair in equal measure. The best of us and the worst. I’ve seen beautiful young people cut down in their prime and seen some of those same people recover, get well and regain their lives – and not only survive but strive.
We’ve come along since those dark times.
When I was tested, I was given pre and post-test counselling, had to wait two weeks for my results and then a further, agonising two weeks for a second test result to confirm what I already knew. Today, getting tested for HIV is simple, easy and accessible. A quick finger prick and you can get your results in 15 to 20 minutes. You don’t even have to visit a clinic if you don’t want to. Testing is done in bars and clubs by trained volunteers from many of the great LGBT and HIV organisations around the country. You can even get home testing and sampling kits so you can check your status in the comfort of your own living room, in front of RuPaul’s Drag Race.
When I received my diagnosis I was told I had anything between six months and two years before I’d develop full-blown AIDS, which would probably lead to my death. In those days, if you told somebody about your status you faced the risk of violence, of losing your home, being ostracised. There was also a great response from the community; we came together. But the fear was real. Today, things couldn’t be more different. If you receive a positive diagnosis in 2016/17 the prognosis is good. With the advances in HIV treatment you are likely to live to a ripe old age. The antiretroviral treatment (ARVs) people with HIV take to control the virus and reduce it to undetectable levels in our blood has also evolved. If you get a positive result you can start treatment straightaway if you want. Most people experience no side effects whatsoever and take just one pill a day. If we want to manage our HIV well, we adapt and incorporate it into our lives and get on with the day-to-day.
I spent most of my twenties, thirties and and early forties shit scared that I could pass HIV on to the guys I had sex with. One broken condom and it could be game over. In 2016, I no longer have that worry. Being on treatment and adhering to it, which means simply remembering to take my one pill, means I’m undetectable – and non-infectious. There have been several studies done in the past few years which revealed that if an HIV-positive person is on treatment and undetectable they can’t pass on the virus. The Partner Study in 2015 looked at 1,116 couples where one person was HIV+ and the other negative. Across 14 European countries, they had sex a total of 58,000 times without a condom and there wasn’t one infection. That’s right, zero infections. That’s great news. It showed that not only does HIV treatment keep people well, but it also reduces the virus to such low levels a positive person can’t pass it on.
We’ve got excellent HIV care in the UK and I’d recommend anyone diagnosed to engage with their health-care team. However, while most people get on with their lives, having HIV can bring its own stresses. Whether it’s worrying about the future, telling people, treatment, how HIV might affect work and relationships or dealing with the stigma that is still so prevalent, living with HIV might feel like a chore that you have to manage alone. Especially if you feel you can’t talk to your friends or loved ones.
Getting support can be really beneficial. HIV support has changed a lot in response to the changing needs of positive people. But also in response to cuts in funding. There are fewer voluntary organisations and those who do survive are helped by groups on shrinking budgets, which serve the needs of a community with higher levels of poor mental health, living in poverty and ageing. It’s shocking that we don’t yet have access to PrEP in th UK: We have the tools to prevent HIV in this country and we don’t deploy them in effect ways. We need access to PrEP on the NHS as soon as possible, and better sex and relationships education for young gay men.
One of the key things any gay man can do is to know their status and get tested regularly. Treatment works, and one of our great successes is that more men are getting tested. We are seeing undiagnosed infection among gay men decrease year-on-year. If every person living with HIV was aware they had it and were on successful treatment, the spread of the virus would slow greatly.
There is no denying the impact HIV has had on the LGBT+ community. However, sometimes you’d think it bypassed us here. There is still no national memorial in the UK to the many thousands who died of AIDS-related illnesses in those devastating years. Those men who were young were us. I knew people who would go to funerals every single week. The fear was palpable. World AIDS Day is about remembering those who have fallen. In the same way we remember those who died in war, we remember them. This is our war – and it still shapes who we are as a community today.
Marc Thompson is the national coordinator of Project 100 at Positively UK, a charity that provides peer-led support and information to people living with HIV. In his spare time he is a social justice activist and the co-founder of Prepster and a co-editor at Blackout UK. Follow him on Twitter @marct_01.
For more information about World AIDS Day visit worldaidsday.org.