Aids: the epidemic that changed Britain
Forty years ago, the UK found itself in the grip of a virus that killed thousands of people and sparked fear, confusion and prejudice – HIV. Janet Weston explores the Aids crisis as it unfolded throughout the 1980s, and how it transformed attitudes about everything from sexuality to healthcare
In the early 1980s, reports of a strange new disease began emerging from the United States. It was picked up in the British gay press – Gay News ran a story in November 1981 under the headline “Gay cancer or mass media scare?” – but relatively few people noticed. Even among those who did, confusion and doubt reigned: weren’t these tales of a “gay cancer” just fear-mongering, a backlash against the gains of the fight for gay liberation in the 1970s? How could a disease target gay men, anyway?
Such suspicions were not without good reason. The medical profession had a difficult history with people who didn’t conform to heterosexual norms: less than 10 years earlier, homosexuality had still been categorised by the internationally influential American Psychiatric Association as a mental disorder. And when it came to Aids, the lack of knowledge about its cause or mode of transmission led to wild speculation. One theory linked Aids to the use of “poppers”, a recreational drug popular on the gay scene; another proposed that Aids was the end point of too many sexually transmitted infections.
The picture grew still more complex as the symptoms associated with this new illness were also identified both among injecting drug users and people with the blood-clotting disorder haemophilia, including women and children. By July 1983, there had been 14 reported cases of Aids in Britain, all among men. Most were gay, including one man who also injected drugs, but the group included another who had been receiving treatment for haemophilia in the form of blood products. Just two months later, the number had risen to 24, and included a woman and a second man with haemophilia.
As numbers of diagnoses in the United Kingdom started to rise sharply, the deaths began. Many people died very soon after diagnosis, as an array of opportunistic infections took advantage of their weakened immune systems. Terrence Higgins died in July 1982, one of the first deaths in the UK attributed to Aids. His partner, Rupert Whitaker, recalled asking the doctors whether Higgins’ death could have been caused by the strange “American disease”, but was dismissed out of hand: he was not family, so they couldn’t tell him anything. It wasn’t until a few years later that he found out they expected him to die soon, too.
Men and women who had begun to see the impact of this disease first-hand devoted themselves to taking action
In the aftermath of Higgins’ death, his friends joined with Whitaker to set up a trust in his name to provide information and education in this information vacuum – and to provide support and services for people affected by Aids. In those frightening early years, charities such as the Terrence Higgins Trust led the charge. Men and women who had begun to see the impact of this disease first-hand devoted themselves to taking action. As well as fundraising, they gathered and shared the latest information, often looking abroad for insights from countries with more advanced epidemics. Volunteers and activists also campaigned for accurate media coverage and government attention, and ran phone lines and community centres to provide counselling and advice.
Dread of infection
Given the uncertain and rapidly changing state of knowledge about Aids, it was often difficult to know what advice to offer. If this really was a sexually transmitted disease, then perhaps abstinence was the answer – but with a newly self-confident gay community and a flourishing scene in many of Britain’s cities, this hardly seemed realistic. There was an idea that condoms might reduce the risks, but it was far from certain, and there were fears that condoms might give a false sense of security. Campaigners and volunteers struggled to decide on the best line to take.
Even so, given the paucity of medical knowledge, many of these volunteers were better informed than the average doctor or nurse. In fact, many people with Aids in the 1980s knew more about their condition than their own clinicians, and some clinicians were willing to listen and learn. The idea of patients as participants in or even consumers of healthcare, whose experiences and views should be valued by biomedicine, had been building since the 1950s and was given a huge boost by patient expertise and advocacy during the first decades of HIV and Aids.
With no known cause, no certainty over the mode of transmission, and all early signs indicating that Aids was invariably quickly fatal, the dread of infection was overwhelming. Nurses recalled being scared of their patients, caring for them in isolation while wearing two sets of gloves and gowns, using disposable cutlery and plates and burning bedsheets after use. “Nurses didn’t even touch a patient’s notes (which had ‘Infectious’ written at the top) without gloves,” one recalled. “It was just horrendous.”
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Life and death on the margins
The virus causing Aids, now known as HIV, was identified in 1984. Soon thereafter a test for HIV antibodies – indicating exposure to the virus – was approved for use in the UK. The ability to test individuals, including those showing no symptoms, was transformative in terms of gathering data about the epidemic, but the results were alarming. Initial testing revealed that perhaps as many as three-quarters of people with haemophilia already had HIV, as did some of their sexual partners.
Haemophilia was commonly treated with products generated from blood donations from large numbers of people, and around 1,200 people in the UK with haemophilia were infected with HIV in the 1980s. For the press, they were the “innocent victims” of the virus.
That label naturally also served as a reminder that there were supposedly “guilty” ones, too, and fear quickly turned into hostility and discrimination. Those affected by Aids were mostly gay men, with drug users the second-largest group. These were already marginalised communities who could easily be blamed for their own misfortune, and Aids soon became deeply stigmatised: a marker of deviant living. Some of those with Aids were glad to be informed that their condition had finally led to a form of cancer, because at least cancer was something that you could tell people about without shame.
In Edinburgh, heroin use had become particularly prevalent in the early 1980s; testing carried out by one doctor, Roy Robertson, revealed that more than half of his patients were HIV positive. The scarcity of needles and syringes, which were often seized by police, meant that drug users shared and repeatedly reused their injecting equipment, and infection had been spreading rapidly.
Public health policy regarding drugs in Scotland underwent a dramatic shift in response, with attention turning to ways of minimising the harms of drug use instead of insisting on abstinence. It became a priority to reduce injecting drug use as much as possible, for example by prescribing methadone to those addicted to heroin, and for those who continued to inject, to provide sterile equipment. The anxiety surrounding HIV/Aids and its high profile made such radical policy changes possible.
The availability of a test for HIV brought its own problems, though. Many people were tested without their knowledge and permission, misinformed of the meaning of their test result, or not told at all. Eighteen-year-old John Campbell, who would later set up the Coalition of People Living with HIV and Aids and advise the government on HIV in prisons, had been arrested in 1986 for “male importuning” and was tested on arrival into prison. But the charges were dropped, he was released, and he had no idea that he had tested positive for another 10 months.
Fear and loathing
The profile of HIV/Aids increased in the second half of the 1980s. Many people in the UK had remained entirely or mostly oblivious to the unfolding disaster, but this soon changed. Although emerging research indicated that HIV could not be transmitted by casual contact, such as a handshake or a shared cup, a lot of the media coverage became increasingly hyperbolic. “I’d shoot my son if he had Aids, says vicar” ran one lurid headline in The Sun in October 1985. Such coverage often quoted the extreme views of people from all walks of life, from publicans seeking to ban people with Aids from their establishments, to the chief constable of Greater Manchester who said that people with Aids were “swirling around in a human cesspit of their own making”.
The fact that people with HIV or Aids might hold down jobs seemed particularly horrifying. Newspapers anxiously reported that people with HIV or Aids might work as airline cabin crews, bus drivers, teachers – or most worryingly of all, as doctors and dentists. Many people with, or suspected of having, HIV or Aids were fired: the Terrence Higgins Trust dealt with about 100 cases of employment discrimination each year.
This period has been characterised as one of “wartime emergency”, with mounting panic finally leading to government action. The Conservative government appointed a cabinet committee to tackle Aids in autumn 1986, and on 21 November there was an emergency debate in the House of Commons. Opinions diverged dramatically, between those favouring regulatory measures such as quarantines and compulsory testing, to those who preferred a more liberal approach, including the promotion or provision of condoms and guarantees of confidentiality for those testing positive.
Perhaps most memorable, in terms of government response to the crisis, was the nationwide health education campaign launched in January 1987. In the face of a significant lack of enthusiasm from then prime minister Margaret Thatcher, this included television spots, billboards and a leaflet for every household. Actor John Hurt lent his voice to the now-notorious television advert. Over footage of the word “Aids” being chiselled into a tombstone, he intoned: “If you ignore Aids, it could be the death of you. Don’t die of ignorance.”
This campaign has often been remembered as a success. It was a clear sign of action, and expensive too, costing around £20m. Polls afterwards suggested that viewers felt more confident of their understanding of Aids, and ultimately, the worst predictions for the epidemic in the UK did not materialise. However, the campaign also relied heavily upon generalised impressions of death, disaster and doom, doing little to dispel rumours or to educate and help those already affected or most at risk. Artist and activist Leigh Neal received her diagnosis just as these adverts aired; she remembered their clear message that Aids meant death, and the environment of fear and hostility that this created towards her – including bricks thrown through her window.
For those who were not white gay men, this lack of information and support could be particularly acute. The later 1980s saw the creation of more specialist advocacy and support groups to fill these gaps. One of the founders of Positively Women, a group set up in 1987 by and for women with HIV, remembered feeling “doubly isolated” in most HIV/Aids support groups, as a woman and a former drug user. Mainliners, a support group run by and for HIV-positive drug users, was founded in the same year.
So, too, was the Broderip Ward at Middlesex Hospital in London: a specialist ward for those with HIV and Aids. It was opened by Princess Diana, who took pains to shake hands multiple times with patients at the ward before the cameras, without wearing gloves. Garnering huge press coverage, many recalled this as a vital moment, helping to dispel some of the myths swirling around Aids at the time.
This ward and others like it represented greater resources and medical expertise dedicated to HIV and Aids, but also many more people suffering and dying. Specialist wards could provide a sense of community and even fun, in dark times. HIV nurse Barbara von Barsewich described one patient, “a tall, Italian, glamorous man who came out of a side room [in the ward] at night-time in a blue ball gown and six-inch heels... he swung around and just looked so gorgeous. And then he started coughing up bits of his lung... It was just so hard. It was so painful. You knew exactly what was happening.”
Love and loss
For the most severely affected communities, the extent of the loss in the late 1980s and early 1990s was overwhelming. Julian Hows recalled the deaths of four lovers over these years. One was passionate about cars and was eventually driven to hospital by Hows and friends in a Mercedes-Benz, borrowed for the occasion. As they arrived at the hospital and opened the car door, Hows remembered: “A really nice nurse said, ‘You realise your friend has gone.’” He had died on the journey.
For the most severely affected communities, the extent of the loss in the late 1980s and early 1990s was overwhelming
Gay men and their friends experienced years of countless funerals, with social circles of young people all but obliterated. At many of these funerals, it remained taboo to mention Aids. Many families felt, as writer and activist Simon Watney put it, “condemned to silence, to euphemism”.
In the mass media and popular discourse, Aids stubbornly remained something that happened to “other people”. Generalised fears became more deeply racialised, as news emerged of the epidemic’s disastrous spread and possible origins in Africa. Continuing the tradition of self-help and community organising among those affected by HIV and Aids, volunteers set up the Black HIV/Aids Network in 1989 and began to deliver literature, films and services specifically addressing black and Asian people in the UK.
Towards the end of the 1980s, activism surrounding Aids reached a high point. Members of the newly formed London branch of ACT-UP – the Aids Coalition to Unleash Power – organised a series of eye-catching protests designed to attract headlines. Targets included Australia House, in response to new laws requiring immigrants to take an HIV test, and Pentonville Prison, where helium-filled condoms were released to carry leaflets about Aids over prison walls.
The London branch of ACT-UP soon disbanded, though, and in the 1990s Aids gradually disappeared from the headlines. The arrival of much more effective drug treatments from the mid-1990s onwards transformed HIV into a chronic but manageable condition. And, although there had previously been a great deal of interest in deploying insights from history to understand and contextualise responses to Aids, historical attention to the epidemic also waned.
HIV/Aids had transformed attitudes, practices and policies around sex and sexuality, drug addiction, activism and community-building, as well as hospital hygiene, clinical research and doctor-patient relationships. As the sense of urgency and, later, the memory of the epidemic began to fade, not all of these changes were sustained. Roy Robertson, still working in addiction studies in Scotland, reported that HIV had reappeared in a vulnerable population of injecting drug users in Glasgow in 2015, in a political and policy context that bore striking similarities to that of the early 1980s.
Four decades on from the first diagnoses and deaths, there is now a resurgence of interest. Oral history projects are springing up, and new research is beginning to investigate less well-known experiences. There is a campaign for a public memorial to the lives lost to Aids, and a clear desire to ensure that all the losses and gains of those years are not forgotten. After all, a generation of people diagnosed in the 1980s are now the first people with HIV to reach retirement age. The history of HIV/Aids in the 1980s is still unfolding.
A global concern: key moments in the world’s battle with HIV/Aids in the 1980s
United States 1981Clinical reports began to describe clusters of a rare type of pneumonia and other unusual infections among gay men and then injecting drug users, in California and New York. News of this novel disease was picked up by the gay press. Different names and possible explanations were floated and the term “Aids” was coined in 1982, but the original idea of a “gay plague” proved difficult to dislodge.
Cuba 1983The government set up a National Aids Commission and ordered the destruction of all blood products imported from overseas. Law 41 was passed, giving the Ministry of Public Health power to enforce the quarantining and mandatory treatment of anyone affected by diseases deemed to pose significant community risk. The first case of HIV was diagnosed three years later, and the quarantining in sanatoria of anyone diagnosed with HIV or Aids began. This remained in place until 1993.
Zaire 1984Research in Kinshasa provided strong evidence of the transmission of HIV between heterosexual couples. Here, there were just as many women with HIV or Aids as men. These findings were not easily accepted by the scientific community but were finally published in The Lancet. The prospect of a global epidemic affecting not only gay men, drug users and haemophiliacs, but also heterosexual couples, began to stir more governments to action.
Netherlands 1984A drug users’ “union”, known as a junkibonden and active since 1980, began to provide sterile needles and syringes to injecting drug users in Amsterdam. Initially introduced to tackle the spread of hepatitis B through shared needles, the scale of needle provision was stepped up considerably in light of HIV and Aids and eventually received government funding. The union published literature by and for drug users, and offered peer support and advice on safer injecting.
Senegal 1986The first cases of Aids were reported. This was a different and less virulent strand of the virus, first identified in West Africa by Senegalese researchers the year before. It brought international recognition and encouraged national political attention to HIV and Aids. Rates of infection remained consistently low, thanks not only to the different viral strand, but also factors including the legalisation and regulation of sex work and high safety standards concerning blood products, both of which pre-dated the epidemic.
USSR 1987The first Aids-related death was recorded, a few years after Russia’s health minister declared that it was a “western disease” that would have no impact on a country without drug addicts or prostitution. There were more than 500 known cases by 1990, but the Soviet authorities emphasised that most of these were foreign nationals. A few years after the collapse of the USSR, reports of rapid HIV spread emerged: by the mid-1990s Russia was said to be on the brink of a vast epidemic.
Japan 1989Haemophiliacs infected with HIV filed lawsuits in Tokyo and Osaka, demanding compensation from the government and pharmaceutical companies. Contaminated blood products imported from the US meant that around 40 per cent of Japanese people with haemophilia were infected with HIV. This “tainted blood” scandal dominated headlines and perceptions of HIV and Aids in Japan: plaintiffs and their families finally received a formal apology and compensation in 1996.
Janet Weston is assistant professor at the London School of Hygiene and Tropical Medicine
An episode of the BBC Two series Saved by a Stranger covered the HIV/Aids crisis. You can catch up with that on the BBC iPlayer