Why I walk with Pride
Visibility. If I had to sum up why I walk in Pride in just one word, visibility would be the one.
I first walked in a Pride march during my Erasmus exchange year in Cologne back in 1998. Not long before I had come out as gay in my first year at university at Oxford Brookes. It was an experience I will never forget — an exhilarating feeling of freedom.
Further Pride marches followed in Oxford and in London, where I walked with Stonewall to protest for the equalising the age of consent and against the infamous Section 28.
There were numerous trips to London with friends to visit the bars of Soho and to watch Kylie, Steps, and numerous other acts that pop history would rather forget at G-A-Y at the Astoria. In my final year at Brookes, I became president of the LGBT society, and I wrote my dissertation about gay men in Weimar and Nazi Germany. I think you could say I was out and proud!
Renewed significance
At 9.30am on 2 January 2007 I received a phone call I will never forget. A panicky health advisor was calling me about an HIV test I had had before Christmas. She said I needed to come back in the next day for further tests. Happy New Year, Ant!
And so it was that I was diagnosed HIV positive a decade ago. Thankfully I had tested early and so medically I was OK. Mentally and emotionally, things were quite a bit tougher and I felt quite isolated for a time with few supportive friends. As accepting as the gay scene can and should be, it can often be very isolating to be a gay man living with HIV. The supreme irony is that it is estimated that around one in seven gay men in London is living with the virus.
The turning point came for me when I went along to a newly diagnosed group run by Terrence Higgins Trust (THT). Because of the amazing support I received, a few years later in 2010 I started volunteering with the charity. A few years on in 2013, I was elected to their board.
As I became more involved with the work of THT and found renewed confidence in myself, Pride took on a whole new significance for me. In recent years, I have walked in every London and Brighton Pride parade with THT.
I first heard about the concept of people with an undetectable viral load not being able to pass on HIV with the so-called Swiss Statement back in 2008. I had been living with HIV for about a year at that point, but I had not started medication. I started a few years later in 2010 and became undetectable within a few months. Even though I was not on medication and was not able to — or recommended to — start, it was hugely reassuring to me that I would not be able to pass on the virus after I did. I also knew that if I met another guy who was undetectable he would not be able to pass on another strain of the virus to me.
Actually, the body of evidence — around what has been dubbed #UequalsU [undetectable = untransmittable] by some activists — has been growing for the past 20 years. When the results of the large, international PARTNER study were released they were further proof of what I and many others already knew — I can’t pass on HIV.
I now have the infographic above with those PARTNER study results saved in my phone, as I often have to show it to sceptical or ignorant people I meet. Zero transmissions between the partners in that study is the proof that people successfully on HIV treatment cannot pass on the virus.
However, a survey by YouGov for THT has shown just 9% of the British public are aware of this fact. As I well know, this lack of up-to-date knowledge is fuelling stigma and discrimination, and preventing people from going to get tested. The fear and misinformation around HIV from the time when we had no effective treatment still pervades so much.
Even some people who are long-term diagnosed with HIV still struggle with this game-changing information, such are the emotional scars from the pre-medication era. Sadly, there are still so many ignorant people who do not even know that we have extremely effective treatment for HIV, let alone knowing about undetectability.
Meanwhile, one in seven people with HIV in the UK does not know that they have it. This means they are not getting treatment and they can still pass on the virus.
I am what I am — I am undetectable
Pride is all about visibility. It is one of the best platforms to make a big and bold statement. The most effective HIV and Aids activism of the late 80s and 90s came from the LGBT community. The recent film and book How to Survive a Plague detail the history of ACT UP [the Aids Coalition to Unleash Power] in the US. As someone who professes to be an HIV activist, I know I stand on the shoulders of giants. If it had not have been for groups like ACT UP, I do wonder whether I would be alive today — would we have such effective and life-saving treatment for HIV now? Would more people have died while those first antiretroviral drugs were still in development?
THT was set up in the memory of Terry Higgins — a gay man and one of the first people to die from Aids in Britain — by his partner and friends. I was proud to help champion improved access to PrEP [pre-exposure prophylaxis] at last year’s Pride events under their #United4PrEP banner.
PrEP is such an exciting development in the fight against HIV — it is where HIV-negative people use medication to protect themselves against the virus. It has been shown in a number of studies to be 86% effective — and in practice to be close to 100% effective if taken correctly.
For me, the Can’t Pass It On message for this year’s Pride events is the flip side of the same coin — PrEP as a means for HIV-negative people to protect themselves with antiretrovirals; treatment as prevention and an undetectable viral load as a means for HIV-positive people to stay healthy and to protect others. I am so looking forward to chanting that message: Can’t Pass It On!
- Find out more at tht.org.uk/cantpassiton and #cantpassiton. Every ‘share’ will help educate and change lives.
- An edited version of this post appeared on Middlesex University’s MDX Minds blog
HIV facts:
- HIV is a virus that attacks the immune system and weakens the body’s ability to fight diseases.
- An estimated 101,000 people are living with HIV in the UK and 6,000 people are diagnosed every year. Of these, one in seven are undiagnosed and do not know about their HIV infection.
- HIV treatment lowers the amount of virus in the blood to undetectable levels, which stops it from damaging the immune system, and means the virus cannot be passed on to other people.
- There is still a great deal of stigma about HIV. Stigma is damaging as it prevents people from getting tested, from accessing treatment and from living a happy and healthy life.
- The most common way HIV is transmitted is through sex without a condom.
- You cannot get HIV through casual or day-to-day contact. It cannot be transmitted through kissing, spitting, or sharing a cup, plate or toilet seat.
References:
Section 28 of the Local Government Act 1988 prohibited “promoting homosexuality by teaching or by publishing material” in England and Wales — it led to the founding of Stonewall, the LGBT equality charity, in 1989.
PARTNER study: Rodger et al for the PARTNER study group. Sexual activity without condoms and risk of HIV transmission in serodifferent couples when the HIV-positive partner is using suppressive antiretroviral therapy. JAMA, 2016;316(2):1–11
YouGov survey for Terrence Higgins Trust: Total sample size was 2,022 adults. Fieldwork was undertaken between 6 and 7 June 2017. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).