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HIV and AIDS history

Introduction

Some younger gay men do not have direct personal memories of the early HIV and AIDS crisis of the 1980s and 1990s, as they were either not born or were very young at that time. It’s with this in mind, MENRUS.CO.UK volunteers produced section on HIV and AIDS history in 2016 for you to explore, updated in 2025.

An overview

The first AIDS-related deaths in the UK were recorded in 1981. At the time, the cause of the illness was unknown, and it was initially referred to as GRID (Gay-Related Immune Deficiency), reinforcing homophobic stigma. HTLV-III (Human T-Lymphotropic Virus Type III) was one of the early names for HIV (Human Immunodeficiency Virus) when scientists were first identifying the cause of AIDS (Acquired Immune Deficiency Syndrome).

Scientists confirmed that AIDS was caused by HIV, a virus that damages the immune system. The renaming in 1986 helped clarify that HIV is distinct from other HTLV viruses and is specifically responsible for AIDS. 98% of people diagnosed with HIV to the end of 1985 fell into one of three exposure categories: gay and bisexual men, people who injected drugs and people with haemophilia receiving blood products (Factor VIII).

"Friends would disappear and you'd find out next club night that so-and-so was in hospital or had died. Friends with AIDS were telling their families, coming out at the same time. Lovers and partners were ignored and excluded from funerals, and sidelined by relatives. If you tested positive to HIV antibodies there was no treatment and so it was a death sentence especially if it was a late diagnosis. You learnt about the stages: persistent generalised lymphadenopathy (PGL), AIDS-related complex (ARC) and Acquired Immune Deficiency Syndrome (AIDS).

Young gay men were at the mercy of opportunistic infections: pneumocystis pneumonia, a life-threatening lung infection; cytomegalovirus that caused blindness; toxoplasmosis, a brain infection that caused seizures and coma; candidiasis, a severe mouth and throat fungal infection so you couldn't eat; and Kaposi's sarcoma - purple cancerous skin lesions that singled you out as an 'AIDS carrier'. We watched friends and lovers our age die in horrible ways, unimaginable today.

During visiting hours, gay men would create 'ant trails' to and from Broderip and Charles Bell AIDS wards at the Middlesex Hospital. Afterwards we'd go to the pub or a club to decompress or let off steam. We lived for the moment but, did so in fear, our lives a revolving door of hospital visits, funerals, activism, AIDS benefits and helpline shifts. Don't forget, there was also Thatcher, the miner's strike, Section 28 and an all time high unemployment rate. The weekly DHSS unemployment benefit or 'dole' for a single person was £20.65. Milk was 21p a pint, beer was 76p, and lager 86p.

Many of us lost whole friendship groups which had to be renewed, never knowing who would might be next. The camaraderie was intense. It was our lifeline, an anchor and survival mechanism. It's easier to look back now. I'm not sure what we're called today, elders or survivors, but there's a generation that continues to work through grief, loss and trauma." JDF, 2024.

The media, campaigns and helplines

Due to limited knowledge of the virus, misinformation and discrimination were rampant and by the mid 80s newspapers were ramping up their own narrative with such headlines as:

“Gay plague agony” (News of the World)
“Gay virus plague” (The Mail on Sunday)
"Gays in fear" (The Sun)
“Killer blood tests ordered at donor centres" (The Mail on Sunday).
“Cough can spread AIDS, warns Doc” (The Sun)
“It’s spreading like wildfire” (The Sun)
“Kiss of Death” (The Star)
“A million will have AIDS in six years” (Daily Mail)

These headlines were printed at a time when cases were rising rapidly, and awareness campaigns were barely off the ground. In 1986 the Department of Health and Social Security (DHSS) launched the AIDS education campaign, ‘Don’t Aid AIDS’ which had little impact. A year later in 1987, the government launched the 'Don't Die of Ignorance' or ‘Tombstone’ campaign delivering a leaflet to every household in the UK (the ad voiced by actor John Hurt). This was supported by the National AIDS Helpline though London Lesbian and Gay Switchboard was already inundated by calls and regional helplines were emerging such as Leeds AIDS Advice, and Manchester AIDS Line.

Section or Clause 28

Section 28 refers to part of the Local Government Act 1988 and widely considered to be one of the most pernicious and harming pieces of legislation to be passed by a UK government in recent decades, affecting the lives of LGBT+ people up and down the country and those charged with their care and education. It stated that local authorities in England, Scotland and Wales "shall not intentionally promote homosexuality or publish material with the intention of promoting homosexuality" or "promote the teaching in any maintained school of the acceptability of homosexuality as a pretended family relationship". It's sometimes referred to as Clause 28, eferencing Scottish legislation. The legislation came into effect under Margaret Thatcher's government in May 1988 causing organisations, to close, limit activities or to self-censor. This was due to uncertainty around what constituted the "promotion" of homosexuality, leading many teachers to avoid discussing the topic in any educational context including sexual health, safer sex and HIV prevention. It's path to repeal was sluggish at best but the legislation was eventually removed from the statute books in September 2003.

Section 28 | MEN R US

Things that happened

In 1983, BBC Horizon aired its documentary "Killer in the village"
In 1983, Lucozade re-brands slogan "Lucozade aids recovery" with "Lucozade replaces lost energy".
In 1984, Bronski Beat's debut album "The Age of Consent" with Jimmy Somerville.
In 1985, actor Rock Hudson died from AIDS.
Circa 1985-6, Margaret Thatcher opposed references to anal intercourse in public health material, fearing the proposed descriptions of “risky sex” would do immense harm to young teenagers.
In 1986, Manchester Chief Constable James Anderton remarks that homosexuals, drug addicts and prostitutes who had HIV/AIDS were "swirling in a human cesspit of their own making".
In 1987, Stephen Fry produced ‘Hysteria’, a comedy benefit for the Terrence Higgins Trust.
In 1987, Princess Diana opened the Broderip Ward at the Middlesex Hospital.
In 1987, "It's a Sin" from the album "Actually" was released by the Pet Shop Boys.
In 1987, the Vatican, under John Paul II, issued a document reinforcing the Church’s stance that moral behavior (chastity and monogamy) was the only acceptable way to prevent AIDS. Condoms were not promoted, even for HIV prevention, despite growing public health concerns.
in 1989, American photographer Robert Mapplethorpe died from AIDS.
In 1991, Freddie Mercury died from AIDS.

Treatments for HIV

In 1987, an early antiretroviral therapy (ART) was introduced with the approval of AZT (zidovudine). It was the first medication to show effectiveness in slowing disease progression though the side effects were horrendous. The arrival of HIV combination therapies by the mid-1990s were the game changer, dramatically improving prognosis and quality of life. Since the first cases of AIDS were reported four decades ago, the UK has moved from an epidemic and crisis to control with improved HIV treatments, HIV prevention, and ‘test a treat’ resulting in a significant reduction in new diagnoses. However, persistent issues remain such as stigma, late diagnoses, access to PrEP, and LGBT+ health inequalities.

HIV treatment | MEN R US

Living with HIV and deaths

As of 2022, approximately 107,950 people in the UK were living with diagnosed HIV and accessing care. This figure has been increasing over the past decade, rising by 34% since 2013. Note that these numbers represent those diagnosed; an estimated 5,200 individuals remain undiagnosed and are unaware of their HIV status. Determining the exact total number of AIDS-related deaths in the UK since the beginning of the epidemic is challenging due to variations in data collection and reporting over the decades. However, available data provides some insight, thank you Wikipedia:

By 1996, approximately 12,105 individuals had died from AIDS-related illnesses in the UK.
Between 1997 and 2012, an additional 2,450 deaths were recorded in England and Wales due to AIDS-related conditions.
From 2013 to 2018, estimates suggest that between 832 and 1,494 individuals died from AIDS-defining illnesses in the UK.

Combining these figures indicates that 15,387 to 16,049 people have died from AIDS-related illnesses in the UK up to 2018. It's important to note that these numbers are approximate, and the actual total may be higher due to underreporting or incomplete data in earlier years. Obtaining a precise cumulative total is difficult due to historical data limitations and changes in diagnostic criteria over time.

The shadow of HIV and AIDS

There is a collective view that says there a shadow over the lives of gay men today that can be traced back to the HIV and AIDS epidemic. The thinking progresses the idea that, though the epidemic peaked decades ago, its legacy continues to shape the lives of gay men today. The following notes are neither comprehensive or complete but hould provide an engaging springboard for thought and discussion.

The older
Many gay men who lived through the 1980s and 1990s were banished by their families, and lost entire friendship groups, partners and boyfriends to AIDS. Witnessing suffering and death alongside government neglect and homophobia caused trauma that still casts a shadow. Some gay men feel guilt over surviving while so many others died. Many had to suppress their grief due to the stigma and lack of public mourning; the same generation that fought for LGBT+ rights while simultaneously navigating a death sentence attached to their identity and sexuality. Even today, some struggle with trust, intimacy, and mental health challenges that stem from those years.

The younger
Even with the success of treatments and prevention, HIV still carries an emotional weight that younger men internalise through fear, shame, or avoidance of open conversations about risks and risk taking. Stigmatising language like “clean only” persists on hook-up and apps reinforcing the idea that HIV status defines worth. Some use chems as a way to find connection, boost confidence, escape loneliness, or trauma, often without realising the connections.

Stigma and rejection
Even though HIV is treatable, stigma remains deeply ingrained. HIV positive gay men can struggle with disclosing their status due to fear of rejection. Some HIV negative men refuse intimacy with those living with HIV even if they are undetectable, reinforcing the notion that they are "unwanted" and “undesirable”. HIV stigma still exists in workplaces, healthcare settings, and social groups, causing self-doubt and withdrawal. The shame that was instilled during the epidemic still lingers in cultural attitudes, hook-up culture, and social spaces, even among those who did not personally experience the crisis.

Generational divides and lack of shared understanding
A growing divide exists between older gay men who experienced the epidemic firsthand and younger gay men who grew up with effective treatments. Survivors can feel that younger generations do not understand or acknowledge the trauma they endured. Some feel burdened by the weight of history or feel disconnected from it, leading to guilt about their privilege of living in a time of HIV treatments. There are few spaces where younger and older gay men engage in dialogue about the epidemic, leading to a loss of historical connection and mutual support. This disconnect sometimes causes resentment, misunderstandings, and missed opportunities for healing and mentorship between generations.

Mental health struggles and loneliness
Even in the 21^st century, fear of HIV stigma in relationships persists, some actively avoid dating or sex due to self-doubt, shame, or anxiety. Older gay men living with HIV, especially those who lost partners during the epidemic, may experience loneliness and lack of community support. The expereiences and memories of growing up with HIV fear or dealing with stigma contribute to depression among gay men. Some turn to recreational drug use and chems (or alcohol) to cope with deep-seated trauma or rejection, which they may not even recognise as such. Even with greater awareness of mental health, the emotional toll of the epidemic is rarely discussed openly, leaving many to internalise their struggles in silence.

The cultural silence is deafening
Although dramas like “It’s a Sin” (2021) reignited public awareness of the HIV and AIDS crisis, some gay men still feel the epidemic is not discussed in sufficient depth or there needs some sort of truth and reconciliation. Younger generations are not necessarily actively encouraged to learn about their history which can lead to ignorance or apathy while older gay men avoid discussing it because the memories are too painful or no one is interested outside a sound bite. HIV is rarely acknowledged in the wider media, reinforcing the idea that it was a “gay disease” of the past. There is something about looking back in order to move forward. Unless we talk about it collectively we won't know. Without more open discussions, gay men continue to suffer in silence, unable to process the epidemic’s impact on their identity, self-worth, and mental well-being.

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More

Early days of AIDS crisis in San Francisco in 1982 | ABC7 News Bay Area | USA | 2 Dec 2020 | 3m 19s
The UK's forgotten epidemic: The fight against AIDS | Joe | UK | 18 Jun 2020 | 10m 18s
HIV/AIDS: The Plague Years | CDC | USA | 13 Aug 2020 | 21m 25s
Life Before the Lifeboat: San Francisco's Courageous Response to the AIDS Outbreak | UC San Francisco | USA | 28 Apr 2014 | 28m 56s

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