Articles
Terry Higgins: 30th anniversary
Terry Higgins (pictured) died 30 years ago today – on 4 July 1982. It’s impossible to say for sure that he was the first gay man to die of AIDS-related illness in the UK, but he was certainly among the first.The Londoner was aged 37 when he died, and had been suffering from ill health for up to two years before his death. At the time, his doctors were unable to determine what was wrong with him. Despite attempting to treat individual symptoms, he continued to decline, before finally succumbing to pneumonia.
His death was a devastating blow for those who knew him. A group of his closest friends, including his then boyfriend, Rupert Whitaker, Martyn Butler and Tony Calvert, decided to honour Terry by setting up an organisation in his name. The Terrence Higgins Trust was born – initially with the aim of raising money to fund research into the illness that had killed Terry. To mark the anniversary of Terry’s death, the Terrence Higgins Trust is launching a new campaign to highlight their work. David Hudson chatted with Tony Calvert about his memories of Terry, and the early days of the Terrence Higgins Trust, and then to Sir Nick Partridge, Chief Executive of the Trust since 1991, about how its work has evolved over the last 30 years.
Tony Calvert
How did you know Terry Higgins?
I met Terry in a bar in Soho in Wardour Street around about 1976, and we became friends. And a little time later, around 1978/79, he moved into my flat in Kensington, and we shared a home together there. We were never lovers, but close friends.
What are your overriding memories of him?
A very loving and very kind man. Very good to his friends. He was about ten years older than us, as a group of us friends. We used to all go to Heaven – myself, Martin, Lenny and Tom – lots of us at the time. He was like a mother to us, really, at times. He’d cook food for us at the flat, make sure all the shirts and T-shirts were ironed. A fun-loving guy. Certainly the best friend I ever had.
How did you learn of his illness?
Terry and myself moved to Amsterdam in 1980. We had a flat and some work there for a while. Terry came back early in the year and I came back a bit later. When I came back we were living together in Barons Court for a short time, and that’s when he started to fall ill. He was getting body rashes. His weight went from over 13 stone down to 10 stone in maybe 18 months, and I was forever taking him to the doctor and to the clinic. He was having night sweats and couldn’t sleep. He couldn’t swallow food. And we just didn’t know what was going on. The doctor didn’t know. And then we were in Heaven one night. It was just after my 26th birthday, around April time in 1982. Terry collapsed on the dancefloor. We all got him up and we took him straight down to St Thomas’ hospital. We were asking the doctor questions all the time. About a week before he died, the doctor said that they had determined that there he had a parasitic pneumonia, and that they were dealing with that the best way they could. They were also looking into information coming from America, from the East Coast of America, that there was a virus affecting people.
What was his approach to his illness? Did he think it was something serious?
He didn’t know. A week or so before he died, he was very frail. I went up to see him in the hospital, put him into the wheelchair and wheeled him to the TV room. And he still wanted his cigarettes, so we went on to the stairwell of the hospital for his cigarette, which he could hardly smoke. I said “The doctor’s telling me it’s a form of pneumonia.” My brother had died of pneumonia many years before that as a baby, and I’d thought, you know, with medical advances, that they could deal with that, and it wouldn’t be such a problem, and Terry was such a strong guy. We had no idea at the time that it was so serious, that it was life-threatening.
When did you make the connection with Terry’s death and with what was beginning to become apparent in America?
In 1982. We’d set up the Trust. I can remember being sat with Martin [Butler] in his flat in Limehouse, because I’d just moved up to Westferry Road, and we sat there and discussed what we could do. And Rupert Whittaker, who was Terry’s boyfriend. We decided to set up what we called the Terry Higgins Trust, and after a short time time we decided to change that to Terrence, as it sounded a little better. And we organised events, and we had wonderful support from people like the Black Cap, the Vauxhall Tavern, Spatz, and Bang and Heaven in particular. And the drag queens. They would do benefits at the Black Cap and various venues. Collection boxes were here, there and everywhere, although I have to say that there were quite a few places that wouldn’t accept them at the time. The stigma was there. They didn’t want to have a collection box on their bar that talked about people dying. It was a difficult time.
And what was the actual thinking behind launching the Trust?
The initial idea was to raise £100,000 to plunge straight into research. Intensive research. Because we couldn’t sit down and do nothing. We really couldn’t. We had to get up and do something. And of course, people all around us were going through these same symptoms, and the more it became apparent as to what this was, the more it spurred us on to actually get out and do more about it.
As a gay man, can you tell us what it was like at that time? Was it very scary?
Very scary. I can remember, in 1986, I lost a close friend of mine, Charlie, and I was sitting in my bath on the eve of my 30th birthday. Charlie had been dead 3-4 weeks at this point, and I thought “Will I be here in ten years’ time? Will I be here in five years’ time?” And I really didn’t believe that I’d be here. You didn’t believe that. You know, I was safe, but we were still all wondering how it could be contracted. We didn’t know all the facts. So yes, it was a terrifying time, especially when you’re young. I mean, I was 30 years old, and when we’d set up the Trust I was 25/26, Martin was a couple of years older, and Rupert was even younger – about 19 or 20. We were all scared. Everyone was scared. I can recall going into the Coleherne bar, after not being in there for a couple of years, and seeing people that I hadn’t seen for a while – not friends but acquaintances, and them saying “Oh, I’d thought you’d died.”
Martin had this too, we all had it, the founders, and I said, “Well what made you think that?”, and they’d say “Because you were the Terrence Higgins Trust so we thought you had AIDS and were dying”! Tsk! No, we’re still here! And I’m glad that I’m here now, and about what the Trust has done, and what they continue to do.
Sir Nick Partridge
Sir Nick Partridge joined the Terrence Higgins Trust in 1985, and became Chief Executive in 1991.
How has THT grown in the last 30 years?
Terrence Higgins Trust was wholly volunteer-run from 1982 to 1985. I joined as one of the first full-time staff members in 1985 when the budget for the Trust was about £30,000 for the year. Now, partly through merger, we’ve grown to a budget of £20million. Of course, what you’ve also got to remember is that the epidemic has also grown over that time. So we’ve gone from one person to 100,000 people living with HIV in the UK – 25% of whom don’t know that they have HIV yet.
We now have 32 service centres around England, Scotland and Wales, and most of those have their own history. For example, our centre in Brighton was the Sussex AIDS Centre until it, with along with a number of other regional AIDS organisations merged with us in a groundbreaking merger in 1999, which was in response to the huge change in needs of people with HIV, and which came about as a result of the introduction of highly effective treatments in 1997.
How has the nature of the work of the Terrence Higgins Trust changed in the last 30 years?
It’s changed almost wholly and often. One of the key achievements of the Terrence Higgins Trust is its ability to continually change as the epidemic has diversified, as the needs of people with HIV have changed, and as prevention has continued to develop and change over those 30 years. So we now provide a much wider range of services, which include sexual health services, and our pioneering HIV fast-test clinics, were the first organisation to offer gay men a rapid HIV test, with results in 20 minutes, in community settings, which most sexual health services now offer. I think the big changes are, firstly, that we’ve had generation after generation of people coming on to the scene needing new prevention messages in a different way, and there’s a lot more work to be done on that. The second big change, obviously, is the transformation and development of drug therapy, which now means that if you’re diagnosed promptly after infection, and you go on to treatment at the best time, you’re likely to live almost as long as someone of your age who is HIV-negative. That’s the key reason why the third big change, which is in HIV testing, is so important. It can save your life. Regular and routine HIV testing is so very important and easy to do.
What would you identify as the biggest challenges in the fight against HIV?
I think it’s how we continually refresh prevention campaigns. And how we remember the scale of the epidemic amongst gay men. It has a hugely disproportionate impact on gay men, and it’s the single biggest health issue that gay men face.
Has the work of THT been hampered by cutbacks in grants and funding?
We have, along with all charities, have to work doubly hard to maintain and grow our voluntary income and our charitable income, and we really do need the continued support and encouragement of the LGBT community, to volunteer, to fundraise, to support out work. But the biggest impact, actually, is on people with HIV, who are now all part of the big benefits review and the reductions in their benefits that they’re likely to see over coming years.
If there was a message that you’d like our readers to take away from this feature, what would it be?
We all should be so proud of what Terrence Higgins Trust has achieved over the last 30 years. There is still so much to do particularly in prevention, in regular and routine HIV testing, and in confronting stigma and discrimination – as that is the one thing that hasn’t changed over the past 30 years.
To find out more about the Terrence Higgins Trust – for HIV information, or to donate or volunteer – go to www.tht.org.uk
Posted: 4 July
