I saw the advertisement for the office administrator post at the Terrence Higgins Trust in 1985. My father told me it would be a mistake to apply for a job there since once it was on my CV it would blight my future career. I went ahead anyway. By then, there was a clear sense of foreboding among gay men in Europe. The number of people diagnosed in the US was doubling every six months and, to use Larry Kramer’s words, the body count was rising. There was controversy still about how HIV was transmitted. Could you catch it through kissing? Through oral sex? Through mosquito bites? Through a simple touch? We were quite rightly fearful of a new infectious disease and outraged that governments around the world were ignoring it. Society split between those who saw the need for care and compassion and those who wanted to distance themselves and ostracise people with HIV. I knew which camp I wanted to be in. At the start the Terrence Higgins Trust, like Gay Switchboard, was wholly volunteer-run.

Most of the people involved were volunteers in their twenties and thirties and had scant understanding of how to work with health services, social services, local and central government, how to raise money, how to apply for grants or even how to become a charity. It was a steep learning curve. When Gay Switchboard had applied for charitable status a few years earlier, the charity commissioners rejected their application on the basis that, in their view, the provision of support and information to homosexuals was not an appropriate charitable activity. THT learned from that and, when it applied for charitable status in 1983, instead of emphasising the gay community, it hinged the application on its support for people with AIDS.

  We may have lacked experience but we did have a blueprint. In the US, gay organisations had already pioneered the buddy system to support people abandoned by their families, and that became the living heart of THT. We shamelessly stole from the training manuals our American colleagues had devised, and assigned volunteers to local groups, each covering a different area in London. As soon as the call from a hospital came in, a suitable buddy volunteer would be briefed. Incredible friendships were created as a result. There was very little money. A grant had been secured from the Greater London Council (GLC) under Ken Livingstone – Red Ken, the right-wing press called him – to fund my post and that of Janet Green, but the Conservative-run Westminster City Council led by Dame Shirley Porter took the GLC to court to prevent the money being paid.

They were extraordinary times. When the London Lighthouse ran out of money in 1987, Ian McEllan did his Talking Shakespeare solo show for weeks, giving all the proceeds to the Lighthouse. Similarly for THT: we were saved by an astounding level of support from drag queens like Lily Savage, who put on benefits for us in pubs and clubs and, later, theatre people and musicians like Elton John. Without them, the charity would not have survived. 

Soon we had the helpline, buddy group, health promotion group, a counselling group, a welfare rights group, a medical group whose task was to interpret the latest developments in scientific understanding of the virus, a legal group who fought cases of unfair dismissal, and an interfaith group which provided a space for gay men and women of faith to come together. It produced, for instance, a leaflet Is The Chalice Safe? setting out the facts of HIV transmission for people worried they might pass on or pick up the virus if they participated in Holy Communion. There were always arguments, egos, squabbles over funding and priorities, and sometimes the steering committee meetings went on long past midnight as people jockeyed to promote their particular corner, but it was an extraordinary blossoming of community activism. We broke new ground in finding ways to get the message across about safe sex, knowing we would be listened to in a way a government campaign might not be. No gay men used condoms in 1980, but many, many did so by 1985. Our health promotion group provided leaflets promoting condom use and, as a side benefit, we saw a dramatic drop in cases of gonorrhoea, syphilis and other sexually transmitted infections. It’s something we should always be immensely proud of as a community, because not only did we change risky sexual behaviours, we also started the country talking about sex in a way it had never done previously.

There was a mistaken belief before AIDS that sex had become safe for the first time in human history, with the Pill to prevent pregnancy and antibiotics to cure most STIs. But now sex was dangerous again, and the only way to eliminate the danger was to talk about what goes on in the bedroom, gay or straight. At that point, we began to realise how little we knew about the sex lives of gay men. If you are going to deliver effective health campaigns around sex or, indeed, drug use, you have to root those in evidence and prioritise the greatest risks. It caused huge and often hilarious rows in our meetings, because each thought his own sex life represented what the majority of gay men did. So we carried out surveys and asked people to keep diaries, to gain a better understanding of the wonderful diversity of gay men’s sexual behaviour – how many were in long term couples, how many serially monogamous, and how many partied wildly with lots and lots of different partners – not nearly as many as you might imagine from press reports! I’ve always loved the fact that THT never lost its sense of humour and was never anti-sex.

AIDS brought together gay and lesbian communities in a way not seen previously. You have to remember that gay men and women had very different histories and there’d been few places where their interests were seen to coincide – indeed there was an element of traditional misogyny among some older gay men. But so great was this crisis that lesbians saw gay men needed help, as did many sympathetic straight people, and came forward. All of us, I think, were afraid AIDS might be used as an excuse to roll back the small advances in equality we’d gained, which helped forge the alliance between lesbians and gay men.

 

 As a result, we were able to build on what had been learned from the feminist health movement in the 1970s, which aimed to de-medicalise services like maternity care and gynaecology and make them more responsive to women’s needs. The best of the doctors and nurses we dealt with understood immediately that, without listening to what people with AIDS were saying, it would be much harder to come up with treatments or care that worked. We were also fortunate that, although the Department of Health was deter- mined not to be seen as kowtowing to a bunch of gay men, the Chief Medical Officer at the time, Donald Acheson, was an epidemiologist and sympathetic. He gave me his private telephone number and told me to call him at home, so civil servants in the department couldn’t listen in. We also had a sympathetic response from the Secretary of State of Health, Norman Fowler, who set up a separate Cabinet committee on HIV to take decision-making away from the cabinet as a whole, and the baleful influence of Margaret Thatcher.

There were those in the gay community who thought we’d lost our radical edge and shouldn’t be cosying up to the Establishment but, to be effective bringing about change, you can’t remain on the outside lobbing hand grenades in. If you are to have a long term, determined and effective response, you have to occupy some of the central ground, to win the respect of decision makers in government and the professions.

As we grew as an organisation and became more professional, some of that initial improvisatory spirit had to fall by the wayside. There were clashes: it’s heart-breaking to have to agree a policy on the number of funerals staff can attend in paid time, or deal with disgruntled volunteers when unions quite sensibly insisted we institute a no-smoking policy in our new building: “We’re giving you our time and now you say we can’t smoke. It’s AIDS killing us, not the odd cigarette in the office.” But the commitment of both staff and volunteers was extraordinary, a life-affirming response to the cruel and hostile circumstances in which we found ourselves. Funerals became celebrations of life, where the instruction was to wear something bright, not black. Funerals with glitter balls. Funerals where the coffin slid through the curtains accompanied by a joyous disco track. I like to think we played a part in changing the way many funerals are now conducted in the UK. The wakes were amazing, though new dilemmas emerged – what’s the etiquette of cruising at a funeral? 

  The lowest point was, for me, 1993. As well as funding difficulties, the results of the first international clinical trial into the efficacy of AZT, the main treatment at the time, were really disappointing. The numbers dying, and the numbers diagnosed each year, were increasing. You couldn’t travel to the US if you had HIV. Everything seemed to be going the wrong way. Yet still we soldiered on. Little did I know that less than three years away was a real breakthrough in terms of treatment, one that would completely reverse the curve. The only sadness was that it would come too late for so many. Now I know that we helped bring that about. Between 1983 and the late 1990s, close to 300 charities were set up in the UK with HIV and AIDS as the core of their work, offering a real diversity of service provision. Together, we managed to change the public understanding of what it means to be gay, and build the case for equality – and if you’d told me in 1985 that, one day, I’d be able to marry my long-term partner, Simon, I’d have thought you a lunatic. We should be immensely proud of all that we achieved.