Trevor Banthorpe started to worry when he heard the timbre of Ken’s cough.
Ken was prescribed tablets by his doctor that were used to treat asthma, but the diagnosis didn’t seem right to Banthorpe. He had heard that cough before, and he knew he needed to do some research.
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“This is back in the day before Google, so I went to went to the library and said I was going to look up what these pills were for,” Banthorpe told i. “What I actually did was look through the medical dictionary and look up Aids, and every box was ticked.”
He fought back the tears. The last time he’d heard that cough, it was from the mouth of his dying friends.
“I found this out on a Saturday. He had an appointment at the hospital at 9am on Monday. By midday he had been admitted into hospital and he was wired up to a drip.”
His partner Ken was diagnosed with Aids in 1990. After five years of fighting illnesses like cancer and PCP, which had been brought about by the disease, he was readmitted to hospital for the final time in 1995.
Banthorpe, who was diagnosed as HIV positive shortly after his partner, is one of the men who survived the crisis, known as “the forgotten epidemic”.
The illness has been brought into renewed focus by hit TV series It’s A Sin, with those who managed to survive sharing the panic, frustration and lifelines that grounded them through the tragedy.
A Stateside virus
Concerns that a virus was affecting men who had sex with men started to register in 1981, when the first cases of “Gay-Related Immune Deficiency” (GRID) were identified in the United States. In 1983, scientists discovered the virus that causes Aids, and named it HTLV-III.
“From 1981 to 1983, we didn’t know what was causing it,” said Lisa Power, the co-founder of Stonewall and a former volunteer for the Lesbian and Gay Switchboard. “We just knew that there was this strange thing whereby young gay men were dying of things that people didn’t die of if you were that young.
“Young gay men were dying of illnesses like pneumonia, or Kaposi’s sarcoma, a rare type of cancer caused by a virus that affects the skin and mouth,” she added.
Jonathan Blake, 71, was one of the first people diagnosed with HIV in London in 1982. He was told he had the illness when it was named HLTV-III, at Middlesex Hospital at the age of 33.
“I was in San Francisco, a very dear friend of mine got married. I visited the bath houses, which were still functioning, but there did seem to be a kind of unease. One started to hear things, but in a way it didn’t completely connect,” he said.
Power said: “You had to ring the Gay and Lesbian switchboard if you wanted to know where the gay pub was in the town or anything like that, so American tourists would turn up in London with our phone number.
“They’d ring and I can remember saying to them, ‘You can go to these pubs, but if you open your mouth you won’t get laid because nobody is sleeping with Americans’.”
‘I just collapsed’
When Blake learned of his diagnosis in the first stages of the crisis, doctors told him he would have months left to live.
“I was completely winded,” he said. “I was given this terminal diagnosis and then basically told ‘but you can go home now’. I was 33 years old, and it’s like my life was finished before it even started.
“I went back to my flat in the East End, shut the door, and just collapsed. I cut off all my friends, I didn’t get in touch with people. It was awful.”
Banthorpe was living in Norwich when he first heard about the illness in 1982. Perplexed by the illness, doctors restricted visitation rights for patients, plunging them further into isolation.
“All of the time that he was alive, my focus was on Ken. He didn’t want to tell his friends and family, so I respected his wishes.
“When I handed Ken over to the paramedics, I then became an observer. And that’s when I completely fell apart. The following morning he passed away. We’d only been together a couple of years.”
For Ian Green, who turned 18 in 1981, the fear of contracting the virus meant he tried to avoid sex altogether.
“I was terrified of having sex for years,” said Green, now the CEO of the Terrence Higgins Trust. He lost four close friends during the crisis. “I used to vow never to have sex again, and obviously that didn’t last long. When I did have sex, I was wracked with guilt and foreboding that this was a time that I was going to contract HIV.”
When he went for his HIV test in 1984 at Leeds General Infirmary, he was “full of fear”.
“I used to give a false name to the clinic and call myself Luke, because that there was a real concern that I had about the test being put on my medical records which could affect your right to insurance,” Green said.
“You had to wait up to three weeks to get your results, but I remember it like it was yesterday. There’s the trauma of the wait before you had to go back and get the results. It was a long and painful wait, and it was absolutely traumatic.
Green found out he was HIV positive in 1996. “It was a bit of a relief because at least I didn’t have to worry about the fear of contracting HIV anymore. I’d been worried about it for 10 years. It was almost a bit of a weight off my shoulders in a really bizarre way.”
For Marc Thompson, who was a young Black gay man who was diagnosed with HLTV-III at the age of 17 in 1986, the rules extended to not having sex with white men.
“There was an idea that HIV didn’t affect us. I knew nobody in my community with HIV, it was very much over there,” he told i.
“I found out I had HIV the year after I came out as gay. I went to take a test, thinking I’ve had a couple of partners and I remember thinking that they’re well and they haven’t died, so I’ll be fine. I had a lunch date booked the day I got the result, because I was so convinced that it wouldn’t be me.
“I sought counselling myself, and I visited drop in centres but from about 1986 to 1989 I had nothing – no counselling, no therapy, no formal support, no treatment. I just had my mum,” he added.
By the end of 1984, there had been 108 Aids cases and 46 deaths in the UK. By 1987, 1,000 balloons to commemorate the first World Aids Day were released on 1 December, roughly matching the number of recorded UK Aids cases that year.
But in an era of institutional homophobia, reports of a “Gay Plague” in the tabloids ostracised Aids victims. Gay men could have sex legally once they reached 21, and the introduction of Section 28 in 1988 forbade the discussion of LGBTQ+ orientations and relationships in the local government and the classroom.
Men struggling to come out for fear of rejection were reluctant to share their diagnosis until they had no choice.
“Sometimes, the first time their families would know they were gay was when they were in a hospital bed dying,” said Power.
“I’ve been to funerals where the family had tried to pretend that the boyfriend who their dead son lived with didn’t exist.
“Parents did burn the possessions of their children, if they’d died of Aids. Undertakers did refuse to provide a funeral for people with HIV,” said Green.
“Many of the churches were incredibly supportive, but not all of them, and there were some priests who refused to provide funeral services for people with HIV. Medical professionals were really scared themselves and reacted in a really unprofessional way.”
The death of young men with HIV like him haunted Thompson. “People always ask me, ‘Did you go to lots of funerals?’ And I didn’t. I generally didn’t go to loads of funerals and I used to feel terrible about that.
“But every single week, I’d go to a drop in centre. I would see people who are wasting away, and they would get increasingly worse, week after week, and then they would deteriorate, and then the next time you visited, they wouldn’t be there. And as a young man who was also positive, I was constantly faced with that being my reality.
“It was really scary because I knew that death was one thing, but it was seeing the wasting, it was seeing the illness, and it was knowing that there was a world outside of those safe walls to treat and give a shit about us – that was the hardest part.”
Aids: Don’t Die of Ignorance campaign
As the epidemic grew, former health secretary Norman Fowler floated the idea of a national campaign to educate the UK about the disease.
In 1986, the Government launched a campaign with the slogan “Aids: Don’t Die of Ignorance” that saw millions of leaflets distributed to households about the illness. But the apocalyptic campaign, accompanied by an advert showing the creation of a gigantic tombstone, has been ingrained in the psyche of survivors.
“When the government first decided they needed to have a national campaign, Margaret Thatcher wanted it to be posters on the back of toilet doors in public toilets, because that was her understanding of how you dealt with venereal diseases,” Power said.
“She was horrified by the idea that there would be a national campaign on television talking about HIV and Aids, but they got it in. But the leaflet had to use a lot of euphemisms – a leaflet that went into every home talking about homosexuals – and at the switchboard we got a whole load of calls from very puzzled lesbians going, ‘Does this mean me?’
“I will never forget the phone call I got from an old lady who was genuinely worried that her cat might get Aids if it bit a gay man,” said Power. “Everybody got into a complete state.
“But the leaflet did list our number, and that gave young people worried about coming out, or HIV and Aids, a lifeline. Our calls rose dramatically. For a decade we ended all of our calls with ‘While we have you, can I just talk to you about Aids?’”
Even among the community, people were perplexed over how HIV spread. “I had one dear friend, who whenever I would go eat with her, always kept a special pair of cutlery,” said Blake.
“People didn’t believe that Aids existed,” said Power. “Some thought it was a government plot of some sort, or they thought that the pills were all a big pharma plot.
“I can remember being in huge rows at Switchboard between people who believed the stuff they’d read in left wing papers about it being a government plot to stop gay men having sex. They were saying we must all go out and have sex as an act of defiance, but fortunately they weren’t getting a lot of traction.”
A ‘hope and a prayer’
Amid the saddening prognosis, there were HIV positive people who defied the odds.
After six months passed and he was still well, Blake threw himself into activism to keep busy. “I had some tentative outings to East London bars skulking in the shadows. I acted like a modern day leper,” he said. “I was reading a copy of Capital Gay, the big newspaper at the time, and I decided to gird my loins and go to a nuclear deterrent protest.
“I arrived at Russell Square tube stop and I could see the coach outside Gay’s The Word on Marchmont Street. I just thought what am I doing here, and I turned on my heels to flee.
“This voice said ‘Hello, my name is Nigel, who are you?’, and I kind of stopped in my tracks. There was this this guy who was wearing green wellington boots, ochre and crimson pantaloons and had a mop of black curly hair. I said, ‘I’m Jonathan’. And we just spent the day together. I mean, it was just amazing. We still live together, and that’s 38 years on,” he added.
Blake’s activism has been immortalised in the film Pride, where his role in the Lesbian and Gays Support the Miners was brought to screen by Dominic West.
Thompson relied “on a hope and a prayer” to get through the illness, with no treatment available for the condition until 1988.
“When I was diagnosed, I was studying A Levels. I was meant to go to university, and I had all my family activities plans mapped out for me. I’m the first born boy in a Caribbean family, and my parents had quite high expectations of my future. All of those plans were taken away from me in five minutes,” the co-founder of Prepster and BlkOutUK said.
“I dropped out of college, very quickly. I started to work, and I started to learn a little bit of money,” he said. “I did all the things a 19-year-old should do, and I lived my life. I had to battle a lot of demons because it got out that I was positive, and my friendship group, the small black gay community in which I existed and socialised and found love – they found out about my status and it became something that was gossiped about very frequently,” he added.
He became involved in the Naz Project and other Black activist groups addressing HIV and Aids in the community.
“I was this young Black gay man that felt that other Black gay men didn’t get what I was going through. HIV organisations were essentially broadly white organisations in everything but name, and they weren’t meeting my needs either. I would go along to meetings and I would be the only Black man there, or I would be youngest person there and the only one that was well,” Thompson said.
“I knew that I needed to speak to my community. African people who had the virus were being delivered food like tins of beans and sausage and mash. They needed West African food because that’s their diet. We stepped in and we created that.
“I don’t expect a white British gay man who comes from the Isle of Wight to think, ‘I should make some fufu and some plantain’, because it’s not his cultural reference. But where we missed out was we weren’t having conversations with each other about the virus,” he added.
‘The side effects from antiretrovirals were horrendous’
In the late eighties, the first waves of treatment were being trialled in the UK. The first of these was AZT, or azidothymidine, which was originally developed in the 1960s by a US researcher as way to treat cancer.
In March 1987, when AZT was available on prescription for the first time, almost everyone with Aids wanted to take it, as did many who had tested positive for HIV. A three year UK-French trial of the drug was underway. Results showed that more people got Aids and died on Concorde than on any previous trial.
“In 1986, I was asked if I would join a Concorde trial, said Blake. “One half would get the placebo, and the other half gets the drug. I just said, ‘Are you going to pair us up with someone who has got a similar build or metabolism to me, with one of us with the drug and the other with the placebo?’ and they went, ‘Oh no that’s far too complicated’.”
“I just saw red. I told them if they couldn’t be bothered to do that, I can’t be bothered to do their trial.” Blake said walking out of the trial is “one of the reasons I’m still here”.
“In that trial, we were given three grams of this drug. When it was phased out, the dosage was 1.25 milligrammes,” he said. “It was given to a lover and a very dear friend of mine. People would would obviously grab anything. They were desperate,” he added.
When antiretroviral drugs became available in 1996, Blake’s health had dipped, and he had no choice but to start combination therapy.
“I started taking all these pills. By the third week of no changes, I wondered why I had those pills on me,” said Blake. “I woke up the morning of fourth week, I had got so much energy it was unbelievable. It was like Lazarus raised from the dead. I went out and laid a patio, something I had never done in my life.”
When Green was diagnosed in 1996, he entered a drug trial for antiretrovirals shortly after his diagnosis. “That was a real advance, but then the side effects from antiretroviral medications were absolutely horrendous,” he said.
“I remember skin rashes, diarrhoea, nausea, just the side effects from the medication. Psychologically, you think you’re going to take a tablet and it was going to make you better. Actually you took a tablet and it made you feel absolutely awful. That lasted for a couple of years, and the side effects diminished over time,” he added.
Thompson started treatment 15 years after his diagnosis. “In early days of treatment, they were quite horrendous. They would change an individual’s body shape. You experienced weight loss around your jaw and all that kind of thing. I mean I’ve been able to get through the years without being visibly HIV positive.
“But I didn’t, I tolerated the treatment, and that was great and for a few years I stayed the same way. Medication gave me power,” he added.
The treatment became available for Banthorpe shortly after Ken’s death. “Quite frankly, if Ken had survived another six to 12 months he’d probably still be alive today, because the effects of the medication that became available shortly after his death,” he said.
“We didn’t know how just how groundbreaking the medications were at the time, but at least five years down the line from then. They were just meant to prolong your life,” he added.
Surviving two pandemics
The widespread use of highly active antiretroviral therapies (HAART) since 1996 averted many deaths among HIV-positive gay men, and it resulted in a large reduction in Aids cases.
Since then, medical advancements mean HIV positive people in the UK can take three tablets a day on ARVs. When this treatment is taken, they cannot pass the virus on.
Men who have sex with men can also mitigate their risk of contracting the virus by up to 89 per cent if they take PrEP.
Now, these men who were given as little as three months to live are living into their fifties, sixties and seventies – and they have survived two pandemics.
The survivors speak positively and openly about their diagnosis, and they are championing the goal for the UK to have zero HIV transmissions by 2030.
“It’s only in the last 10 years that I’ve thought I might kind of have a normal life,” said Blake. “I’m now 71, and before that, I was just about seeing through the next day.”
Green added: “In a time when we’re in another global pandemic, perhaps that will resonate a bit more with people because they will have the an understanding of the very real impact of a pandemic on wider society today, and perhaps they can reference that back to HIV.
“Things have changed so much, and that’s something we should celebrate.”
“Everyone thought no-one cared about the eighties and Aids, but It’s A Sin turned that completely on its head,” said Power. “Everybody in the community is even going, ‘Jesus we never knew all of this,’ and I’m going ‘Never knew about it? We all lived through it’.
“I haven’t got HIV, but my whole life has been consumed by this virus at times. I’m not a martyr. I’m just really angry that it’s something that we know how to deal with, and it should be gone by now,” she added.
“HIV gave more to me than it ever took away from me,” said Thompson. “It spurred me on to save my life, and it spurred me on to do good for my community, and it gave me a focus.
“The reason I’m angry today is because men who look like me and love like me are 15 times more likely to get HIV globally than white gay men. So, I’m angry because we don’t put enough effort and energy into fixing that.
“I’ve met so many incredible, amazing, inspirational people who live with HIV and do the work, in spite of all of the things that they face. Although we’ve got ‘treatment U equals U’, and we’re all living these fabulous lives, a lot of us are still carrying thirty years of stigma on our shoulders,” he added.
Banthorpe is keen to point out the stigma still attached to the condition today. “At the beginning of the Brexit debate, Nigel Farage said he wouldn’t allow people with HIV into the country.
“HIV needs to be understood, believed. and accepted in order and in order to share to break down that stigma and and to break, because the stigma also means that people don’t get tested often enough.
“Once Covid started off, I sort of laughed and said, ‘That’s not good. I can’t go through this again’. And, as in a similar way like when it’s with Covid, I didn’t think I would be living through a second pandemic, never mind a first.”
HIV positive people who take ART treatment cannot pass on HIV to other people. More information can be found through this page.