A terrible time for gay men

What it felt like during the rise of the AIDS crisis

As we mark LGBT+ History month 2024, with its focus on medicine, this article looks at one issue in particular: the initial response of the medical fraternity and the wider global community to the AIDS crisis.

In the early 1980s, it felt like attitudes were beginning to shift towards gay men, following the decriminalisation and the de-pathologising of sexuality. Medics finally accepted (at least officially) that being gay was not an illness, a personality disorder, or a perversion as it had previously been labelled. Then things started going horribly, horrifically wrong, and many gay men would never recover from what was about to happen.

It started with news about a disease that was affecting gay men in California. Between October 1980 and May 1981, five previously healthy young gay men were treated at different hospitals in Los Angeles, California, and two subsequently died. As this new unnamed disease began to spread, the press began to have a field day, and stigma began to surround this “Gay Plague,” this “gay cancer,” this “GRID” – Gay Related Immune Deficiency. Gay men became terrified that they might catch this dreadful new wasting disease which left the immune system completely battered, causing a particular cancer, and for many, resulting in an agonising and quick death.

In September 1982, the Centres for Disease Control (CDC) in America first used the term Acquired Immune Deficiency Syndrome – AIDS – to describe the disease caused by the HIV virus. By the end of that year, cases were spreading across Europe, then it was happening here in the UK. People started dying, and friends of friends suddenly became ill, and then died. It got to the stage where my friends were just waiting for it to be their turn. Some decided to party while they could, while others retreated, scared to go out. About half of those diagnosed were dying within two years.

Even though it was quickly realised that it wasn’t only gay men who were affected, it was gay men who were well and truly framed and blamed, The media had a field day, fuelling homophobia, and religious zealots proclaimed that this tragedy somehow served gay men right, and was God’s punishment for committing a mortal sin. Gay people were a threat to “innocent” people; for example, when it emerged that people who had received blood transfusions were developing AIDS, gay men were accused of affecting “innocent victims.”

The response of governments was initially appallingly slow, sparking campaigns and demonstrations led by the gay community, who demanded more investment for research and finding treatments. Meanwhile, the American media continued to plug that this was a niche disease, only affecting gay men. Negative coverage continued relentlessly, with headlines such as the Mail on Sunday‘s “Britain threatened by gay virus plague” on 6th January 1985. A plague, in the biblical sense, was a punishment sent by God. At the same time, Margaret Thatcher was busy working on Clause 28. The arrival of AIDS in the UK provided her with the perfect opportunity to capitalise on homophobia in order to push through this discriminatory legislation.

Studies revealed that family doctors and psychiatrists in western countries continued with their negative attitudes; an American study in 1986 showed that thirty per cent of doctors would not admit highly qualified gay students to medical school and forty per cent would not allow gay doctors to specialise in paediatrics or psychiatry. This was of course right in the middle of the AIDS crisis.

A global response to AIDS finally began to gather momentum at the end of the 1980s. The World Health Organisation (WHO) established a Special Programme on AIDS in 1987, and in 1988, declared the first of December to be World AIDS Day. In the UK, a controversial advertising campaign was launched. Anyone of my generation remembers the powerful and chilling television advert showing the falling tombstone, with John Hurt’s voiceover: “AIDS – don’t die of ignorance.” In 1991, New York artists created the red ribbon symbol, now synonymous with World AIDS Day. This was the first disease-awareness ribbon.

Campaigns became mobilised, health support became more holistic, and the London Lighthouse was launched, providing specialist respite care (now The Terrence Higgins Trust). I used to go there regularly for lunch; it was both a heart-warming and heart-breaking place to be, seeing men who were so ill, but being supported in a beautiful and inclusive environment. Pop stars, film stars and royalty got involved, including Elton John, Elizabeth Taylor, and Princess Diana, who made a point of being filmed touching people with AIDS to show it couldn’t be caught by skin-to-skin contact. Films were made about the plight of those infected with HIV, including Philadelphia in 1994 starring Tom Hanks.

Over time, negative attitudes towards the disease and by association towards gay people began to soften, although it was only when the disease started affecting more straight people that action seemed to really speed up.

Azidothymidine (AZT), the first antiretroviral medication, was introduced in 1987, but it took sixteen years from the emergence of AIDS until the effective and life-saving antiretroviral therapy (ART) appeared in 1996. Even then, the global rolling out of treatment took years, and most people receiving ART were from high-income countries, whereas most of the people with HIV were by then in low- and middle-income countries.

The period from 1996 when the treatment became available, up until the early 2000s, was the height of the loss of lives from AIDS, especially in Sub-Saharan Africa, where AIDS became the leading cause of death. That early association with the disease being branded a “gay plague,” and the stigma and shame that became attached to it as a result, had a huge impact on limiting what should have been an early global response. It wasn’t until 2005, with the creation of The Global Fund to Fight AIDS, Tuberculosis and Malaria, that the global response was properly mobilised, and HIV research become the largest in history for a single disease, until covid-19. However, time has not lessened the sting of the early decades of AIDS for many. More than seventy million people have acquired HIV since it began, and to date, about thirty-five million have died.

AIDS had a huge impact on all of the older men I interviewed. Every single one of them lost friends or partners. Nick described seeing his friend in a hospice as “looking like a zombie – one of the living corpses you see in the pictures from the Nazi concentration camps. Such a beautiful boy now skeletal and covered in lesions. Just too awful for words.”

For Alec, the experience of AIDS was even more personal. His partner Roger contracted HIV and developed AIDS. Alec turned to me, and said quietly, “I survived, and he didn’t.” This was at the time before safe sex. When Roger tested HIV positive, Alec took a test which came back negative. They asked if they should do anything differently, and were told “No, don’t do anything different,” so they carried on having sex with no condom. Then Alec tested positive too. There were no effective drugs – you either died quickly or you went on drugs and died slowly. After Roger's death, Alec moved to England, where he was fortunate enough to be part of the trial for a new cocktail of drugs that was not yet on licence in the UK.

Alec was one of two people I interviewed who lost their partner to AIDS. Dominic describes Justin as a stunningly beautiful and charismatic man. Dominic nursed him until the end, reflecting that if Justin had become ill a couple of years later, he may well have survived, as the triple combination cocktail of drugs which Alec had been lucky enough to trial was just becoming available.

When covid spread in 2020 and people began to lose loved ones, there were lots of vox-pop comments on how people had never dreamed that this kind of thing could happen, and how they’d never known anything like it. It was scary for everyone. We all clapped our carers and NHS staff, and we were all in it together, benefiting quickly from vaccines, developed after the worldwide collaboration of scientists and medics to perform

one of the most remarkable achievements in medical history. Older gay men have been there before, and how did the public, the media and the medical fraternity react then? Shamefully.

This blog is based on an excerpt from my book Bent Is Not Broken. Buy the eBook (various platforms) or get the paperback on Amazon via:

www.books2read.com/BentIsNotBroken

To read more about LGBT+ culture and history, and find out more about the author, head to www.bentisnotbroken.com