History of HIV & AIDS in the UK 1981-1995
This is the first of two pages that document the history of AIDS in the UK. It covers the period between 1981 and 1995, and focuses on the changing events and attitudes that shaped the early response to AIDS. The second page addresses history from 1996 onwards.
AVERT.org also has pages on the global history of AIDS.
1981 History
Following reports that a number of young gay men in the US had been inexplicably dying from rare illnesses, a 49 year-old man was admitted to Brompton Hospital in London suffering from PCP, an uncommon infection that almost always occurs in individuals with a weakened immune system. His condition rapidly deteriorated and he died ten days later. Doctors suggested that this man, who had travelled to the US, might represent the first case of such a condition in the UK.1
1982 History
In September, the US Centers for Disease Control and Prevention (CDC) first used the term Acquired Immune Deficiency Syndrome (AIDS) to describe the new illness that was by now affecting not only large numbers of gay men, but also haemophiliacs, drug users and other Americans.2
One of the earliest UK AIDS patients, Terry Higgins, died. A group of his friends subsequently set up the Terry Higgins Trust, the UK’s first AIDS organisation.3
There had only been seven reported cases of AIDS in the UK at this point, compared to over one thousand in the US.4
1983 History
It was discovered that a number of people in the UK had developed AIDS following blood transfusions. This problem particularly affected haemophiliacs, whose condition made them dependent on blood products. The Mail on Sunday ran a story about ‘killer blood’ in UK hospitals, describing how two male haemophiliacs had discovered that they had AIDS after routine blood transfusions.5 On TV, a Horizon programme entitled “The Killer in the Village” and a Panorama special on AIDS were both screened. The British media were starting to pay more attention to AIDS.
By June, epidemiological studies in the US had led researchers to conclude that AIDS was “most likely to be caused by an agent transmitted by intimate sexual contact, through contaminated needles, or, less commonly, by percutaneous inoculation of infectious blood or blood products. No evidence suggests transmission of AIDS by airborne spread.” They also suggested that AIDS may be transmitted from mother to child before, during, or shortly after birth.6
In the UK, although the blood transfusion cases had widened public perception of who was vulnerable to AIDS, it was clear that those affected by it in the UK at this point were mostly homosexual, and that many had a history of sex with US nationals.7 A number of newspapers ran articles that labelled AIDS ‘the gay plague’.8 In July, there was discussion in the House of Commons after press reports suggested that the large number of gay men planning to attend a forthcoming festival could pose a public health risk:
“Scottish health experts are worried that the Edinburgh international festival next month may become a breeding ground for the spread of the mystery disease acquired immuno-deficiency syndrome” - The Times, July 1983 9
In the same month, Dr Tony Pinching and his colleagues at St Mary’s Hospital in London released preliminary results of a study of 97 gay men in the capital. The study showed that a high proportion of these men had immune cell abnormalities, and a decreased ability to fight off disease. It was believed that these abnormalities might represent a latent phase of AIDS.10
The Scottish Health Monitor was set up to co-ordinate Scotland's response to AIDS. It was the country's first national AIDS charity.11
In August, the Terry Higgins Trust was reborn as a formal organisation, changing its name to the Terrence Higgins Trust.12
In September, people who were thought to be particularly susceptible to AIDS, including gay men, were asked not to donate blood.13
By October 1983 there had been 17 reported cases of AIDS in the UK, compared to 2,868 in the US.14
1984 History
The health service was still ill-informed and ill-equipped to deal with AIDS. Patients were isolated in hospitals and faced the dehumanising experience of ‘barrier’ nursing, where everyone who came into contact with them had to wear hats, gloves, masks, gowns and aprons.15 16
In April, news reached the UK of research by the American scientist Robert Gallo indicating that a virus called HTLV-3 was the likely cause of AIDS, and that tests for the virus would soon be available.17 18
In Wales, the Cardiff AIDS helpline was established to offer support and advice to people with AIDS. It was based on an existing telephone service that had been provided for gay men since the Seventies. The Sussex AIDS Centre was also set up in Brighton, developing out of a Body Positive group and a local gay helpline. The fact that groups such as these were beginning to appear outside of London, where the UK response to AIDS had so far been based, was evidence that AIDS was affecting an increasing number of people in the UK.19
In November, an article published in The Times demonstrated that AIDS was still largely synonymous with homosexuality and promiscuity in the eyes of the public:
"AIDS horrifies not only because of the prognosis for its victims. The infection’s origins and means of propagation excites repugnance, moral and physical, at promiscuous male homosexuality – conduct which, tolerable in private circumstances, has with the advent of “gay liberation” become advertised, even glorified as acceptable public conduct, even a proud badge for public men to wear”20
By the end of 1984 there had been 108 cases of AIDS and 46 deaths in the UK.21
1985 History
Body Positive London, the first UK self-help group for people affected by HTLV-3 and AIDS, was founded in London.22 Support groups were in their infancy in London and non-existent in most other parts of the country.
In February, the Royal College of Nursing predicted that the number of infections in the UK would rise to one million by 1991 if current trends continued.23 This prediction coincided with an increased newspaper interest in AIDS that continued throughout the year, as public concern intensified. Firemen were told by officials at the Fire Brigade Union not to give mouth-to-mouth resuscitation to anyone who might be gay, in case it was possible for HTLV-3 to be transmitted in this way.24 A number of parents kept their children home from school when a nine-year-old haemophiliac pupil tested positive for HTLV-3, and was allowed to continue attending lessons.25 Passengers on the Queen Elizabeth 2 cruise-ship cut their holiday short when it was discovered that a passenger on-board had AIDS, and the crew were criticised for keeping his status secret. One passenger told reporters:
“This dreadful thing has cropped up and we’re not even told about it. It’s terrifying to think this guy could have been talking to me, or we could have been drinking in the bar”26
Misconceptions about what AIDS was and it could be transmitted were so widespread that they even filtered into the medical world; some surgeons, physicians and gynaecologists still believed that the virus could be transmitted through everyday, non-sexual physical contact.27 Efforts to eliminate these misconceptions were not helped by the atmosphere of panic that the tabloids were perpetuating. However, the media coverage of AIDS was not entirely negative; some articles did recognise that much of the fear surrounding AIDS was unnecessary:
“[There is a] thin line between complacency and hysteria when dealing with AIDS. It is undoubtedly a serious disease which will probably kill 5,000 people by 1991. At present a vaccine looks a fairly far-off prospect… But equally AIDS is not a plague”28 - The Observer, 24th February 1985
In May, the first official guidance to doctors and surgeons dealing with AIDS was issued.29
The Health Minister, Kenneth Clarke, enacted powers to detain people with AIDS in hospital against their will, despite the recommendations of leading medical experts who felt that this measure might deter some people from coming forward for treatment.30
In September, testing for HTLV-3 was introduced. It was offered at GUM (Genito-Urinary Medicine) clinics and certain other clinics as arranged and publicised by the District Health Authority. Health Authorities were asked to provide counselling services to people who tested positive, as well as their families and friends.31 At the same time, UK blood transfusion centres began routine testing of all blood donations. The heat treatment of all blood products to inactivate any traces of HTLV-3 was made compulsory.32
In the same month, the Health Minister announced the provision of new grants totaling £900,000 to combat AIDS. This was in addition to the one million pounds that had already been allocated over previous months to implement HTLV-3 testing. Despite these grants, many hospitals complained that they still needed much more funding to help them cope with AIDS. One doctor at St Stephen’s hospital in Fulham said:
“Our AIDS Laboratory is short-staffed. It cannot deal with the demand for [HTLV-3] antibody tests. We can’t even afford the kits, we haven’t got enough staff to administer them… At the moment, we only have one trained counsellor for over five hundred patients.”33
By December, the Government had realised that more funding was needed, and announced a further allocation of £6.3 million for the fight against AIDS – including £2.5 million for the London hospitals which were bearing the brunt of AIDS cases; £2.5 million for a public health education campaign; £750,000 for the screening of blood donations; £270,000 for haemophiliac centres; and £100,000 for the training of AIDS counsellors within the NHS.
The Government also set up the Expert Advisory Group on AIDS (EAGA), a non-departmental, non-statutory public body, that was to meet three times a year and provide ‘advice on such matters relating to AIDS as may be referred to it by the Chief Medical Officers of the Health Departments of the United Kingdom’.34
By the end of the year, 20,303 cases of AIDS worldwide had been reported to the World Health Organisation. Of these cases 275 had occurred in the UK.35
1986 History
Following debate about whether it should be referred to as HTLV-3 or LAV (the name favoured by French researchers), and recognition that both terms referred to the same thing, the name HIV (Human Immunodeficiency Virus) was internationally agreed upon to describe the virus that causes AIDS.36
In February, the Government launched the UK’s first AIDS public information campaign, publishing the message ‘Don’t aid AIDS’ in full-page newspaper adverts.37
In Scotland, it had become clear that areas such as Edinburgh and Dundee had a high prevalence of injecting drug users with HIV. A report suggested that the percentage of injecting drug users in Edinburgh with HIV could be as high as 85%. There were reports of gatherings of 1,020 injectors where one syringe and one needle were shared.38 In response, the UK’s first needle exchange was opened in Dundee, followed by a number of others around England and Scotland. In London, the Kaleidoscope needle exchange was founded as part of a wider church-based project, and in Liverpool the Maryland Street needle exchange began operating from a converted toilet within the Mersey Drug Training and Information Centre.39 An advertising campaign was initiated, based around the message ‘Don’t inject AIDS’.40
The National Blood Transfusion Service distributed a leaflet which stated: “The infection which causes AIDS can be passed by intimate contact from one person to another”. Some people argued that, instead of ‘intimate contact’, a phrase which referred directly to sexual activities should have been used, as this would have been much more accurate and caused less confusion. The fact that the Blood Transfusion Service felt the need to compromise on the language that they used was indicative of British society’s uneasiness when talking about sexual issues, something that many felt needed to change before public AIDS education could be effectively implemented.41
The Royal College of Nursing ruled that nurses who refused to care for people with AIDS could be found guilty of unprofessional behaviour and disciplined. In Wales, nurses at Prince Charles Hospital in Merthyr Tydil threatened to take legal action against Mid-Glamorgan Health Authority if it did not agree to inform them when they were treating AIDS patients.42
A group of friends started to plan the London Lighthouse, a care centre for people with AIDS, after the death of a friend made them realise the inadequacy of the medical care that was available. However, their plans faced a hostile public reaction:
“A group of residents started lobbying local councillors and sent out a petition with 800 names to the local authority demanding that the ‘hospice’ plan be rejected. One of the leaders of the opposition group publicly declared: ‘I don’t mind people who get AIDS through a blood transfusion being treated, but I’m not sorry for the drug addicts and homosexuals who get it’.”43
Thankfully, this hostility received widespread condemnation in the media and actually served to sway public opinion in favour of the charity. Members of the community who supported the plan started a counter-petition, which received an impressive 3,600 signatures.
The AIDS charity AVERT was founded, and released a joint campaign pack with the National Union of Students (NUS) which denounced the way that the media had been covering AIDS. It gave examples of some terms that had been used in UK newspapers to describe AIDS: ‘The Gay Killer Bug’, ‘The Frightening Scourge of Our Times’, ‘Monster in Our Midst’, ‘The March of The Gay Plague’ and ‘Acquired Immoral Deficiency Syndrome’.44 Gay men were particularly dismayed at the way that they had been presented by such phrases:
“Whoever first decided to label it the ‘gay plague’ had a good ear for an alliterative headline but little sense of truth or decency. When will the newspapers… wake up to the fact that gay men, along with haemophiliacs and intravenous drug users, are victims of this terrible disease rather than its perpetrators?” - Chris Smith, Labour MP45
The National Union of Journalists (NUJ) responded to such concerns about press coverage by distributing a leaflet entitled ‘Reporting AIDS’ to working journalists. It urged journalists to be accurate, respect privacy, avoid sensationalism and make their coverage more positive when reporting AIDS stories.46
By the end of the year, there were signs that perceptions of AIDS in the media and the pubic were changing, and that most people now acknowledged that it did not just affect minority groups:
“The time when the average Spectator reader could think of the AIDS epidemic as being someone else’s problem is past. The disease has spread beyond the high risk groups in which it started and is no longer confined to homosexuals, drug addicts, prostitutes and the victims of contaminated blood transfusions” - The Spectator, November 198647
This same article in The Spectator recognised that a lot of confusion had been caused so far by the imprecise use of terminology in the media when reporting AIDS cases. For instance, it pointed out that the term ‘AIDS virus’ is invalid because AIDS is not a virus. Articles such as this, which recognised that AIDS is not confined to minority groups and paid more attention to the correct use of terminology, signalled the start of a wider ‘normalisation’ or ‘mainstreaming’ of AIDS in the UK. AIDS was no longer conceived of as ‘someone else’s problem’, but as a public health crisis that required a universally sympathetic response. Mainstream attitudes towards AIDS were becoming more respectful and compassionate.48
However, prejudice was still rife. In the same month as this article was published, there were calls for James Anderton, the Chief Police Constable of Greater Manchester, to step down after he made the following comments at a national conference of police officers called to discuss HIV:
“I see increasing evidence of people swirling about in a human cesspit of their own making… We must ask why homosexuals freely engage in sodomy and other obnoxious practices, knowing the dangers involved.”49
A Cabinet Committee on AIDS was set up under the Chairmanship of William Whitelaw, the Deputy Prime Minister. Its first meeting was held on November 11th.50
In December, Radio One launched its ‘Play Safe’ AIDS education campaign with a 48 minute documentary that promoted safe sex. Throughout the campaign, listeners were encouraged to access a telephone helpline with any enquiries or concerns that they had. Originally this number was serviced by other helplines, such as the Gay Switchboard, Scottish AIDS Monitoring, and the THT helpline. But it soon became clear that a more mixed group of telephone advisers would be more appropriate; most of those calling in for advice were heterosexual, while the advisers from the aforementioned organisations were predominantly homosexual. More importantly, it was realised that there was a lot of demand for the helpline and that a bigger operation was needed in order to adequately service the TV ‘AIDS week’ that was being planned for the new year. As a result, The National Advisory Service on AIDS (NASA) was formulated by the BBC and the Broadcasting Support Services. More commonly known as the National AIDS Helpline, the service offered advice, information and support to anyone concerned about AIDS.51 52
1987 History
The Government continued its prevention campaign, posting leaflets with the slogan ‘AIDS – Don’t Die of Ignorance’ to all of the 23 million homes in the country.53 The ‘Tombstone’ and ‘Iceberg’ adverts appeared on TV, overseen by the Health Education Authority (HEA), which was set up in 1987 to provide public information on HIV and AIDS as well as other health issues. Robert Gallo, the American scientist who co-discovered HIV, praised the UK Government’s AIDS campaign, stating that:
“It is a model for other countries, including my own, of aggressive public education.”54
Between the 27th of February and the 8th of March, there was a television ‘AIDS week’ in the UK. The BBC and ITV simultaneously broadcast a programme entitled ‘AIDS – The Facts’, as well as a number of similar programmes. The campaign successfully captured the attention of both the media and the public. The phone number of the National AIDS Helpline was advertised throughout the week.55 56
The drug azidothymidine (AZT) was made widely available for use in the treatment of HIV, after the results of previous US trials indicated that the death rate among HIV patients treated with the drug was significantly lower than it was for those receiving no treatment.57 However, AZT had severe side effects and was very unpredictable in the way that it affected different people. Many people taking the drug suffered so badly from these side effects that they stopped taking it; they felt that their quality of life while on the treatment was so bad that it simply wasn’t worth it. The feeling among the AIDS community was one of disappointment and desperation:
“When people with HIV came through the door of the lab I could almost touch their anger. But I realised that the anger was not really about Wellcome or me, but about their mortality. They were frustrated, and saying, ‘Please, please what can I do?’ These were genuine cris de Coeur.” - Professor Trevor Jones, director of research at the Wellcome Trust58
The National AIDS Trust was set up to co-ordinate voluntary-sector AIDS work.59
Princess Diana opened the first specialist UK HIV hospital ward in Middlesex, making a point of not wearing gloves when she shook hands with AIDS patients. This was widely reported in the media. One of the patients stated:
“She still shook my hand without her gloves on. That meant more to me than anything else… It proves you can’t get AIDS from normal social contact”60
In November, Channel 4 broadcast the documentary ‘AIDS: the Unheard Voices’, in which Dr. Peter Duesberg and other scientists questioned the idea that HIV was the cause of AIDS.61
The number of AIDS cases reported worldwide was now 71,751, with 1,170 in the UK.62
1988 History
A world summit of ministers of health was held in London, with the aim of discussing a common international AIDS strategy. One outcome of this meeting was the London Declaration on AIDS Prevention, which emphasised education and the need to protect the human rights and dignity of people with HIV.63 It was also at this occasion that the World Health Organisation declared its intention to promote an annual World AIDS Day, starting from December 1st 1988.64 The meeting was opened by Princess Royal (formerly Princess Anne), who upset many people involved in AIDS education when she stated that:
"the real tragedy concerns the innocent victims, people who have been infected unknowingly, perhaps as a result of a blood transfusion … but possibly, worst of all, those babies who are infected in the womb and are born with the virus."65
The suggestion that there were ‘innocent victims’ seemed to imply that there were also ‘guilty’ ones. This was an unfortunate choice of wording and demonstrated that there was still a lot of social misunderstanding about AIDS in the UK.
The 1988 Local Government Act was passed. In Section 28, it forbade the promotion of homosexuality by local authorities, stating that no local authority was permitted to:
- Intentionally promote homosexuality or publish material with the intention of promoting homosexuality.
- Promote the teaching in any maintained school of the acceptability of homosexuality as a pretended family relationship.66
While theoretically this legislation did not directly apply to school governing bodies or teachers, the unclear nature of the Act led to a lot of misunderstanding and many teachers subsequently avoided talking about homosexuality for fear that they might be doing something illegal. Some gay support groups in places such as colleges and schools were closed, following confusion about their legality.67
The London Lighthouse, a residential and support centre for people with AIDS, was officially opened by Princess Margaret.68
Following debate about the effectiveness of AZT, and whether it should be used in the early or late stages of HIV infection, a three-year Anglo-French research trial known as the ‘Concorde trial’ was initiated. Half of those who enrolled were given AZT while the other half was given a placebo. The trial was controversial, and a number of gay activists criticised it as unethical.69
1989 History
An American AZT trial that had been running parallel with the Concorde trial was ended, after it was found that the progression of AIDS was slowed significantly when the drug was used. However, UK researchers continued with the Concorde trial, arguing that there was still a need to expand upon the data established through the US trial. There was continued debate between researchers in the two countries about the ethics of risking people’s lives for the sake of a trial. A clause was introduced to allow patients in the advanced stages of infection access to AZT even if they had previously been taking a placebo.70
The UK Government Cabinet Committee on AIDS was disbanded, because it was felt that it had achieved its main objectives.71
1990 History
There was increased discussion in the UK about whether there would ever be a heterosexual epidemic because of the difficulty of female-to-male transmission of HIV.72 73
In June ‘The AIDS Catch’, another TV programme questioning the orthodox view that HIV is the cause of AIDS, was screened. It provoked a hostile response amongst the AIDS community.74 Many people felt that it was factually inaccurate and sensationalist, and caused distress to both people living with HIV and campaigners who had worked hard to promote AIDS prevention in the UK .75
The Prime Minister, John Major, announced that the Government would pay £42 million compensation to haemophiliacs infected with HIV and their dependants.76
1991 History
The largest peak in requests for HIV testing in the UK occured in January, when the character Mark Fowler was diagnosed HIV-positive on the BBC television series EastEnders.77
In June, the results of a study carried out in 1990 were published. The study found that one fifth of gay and bisexual men attending GUM (Genito-Urinary Medicine) clinics in London were infected with HIV. The figure was 4% outside London. It also found that the prevalence of HIV amongst injecting drug users surveyed was 1.1%, and that the prevalence among pregnant women receiving antenatal care was 1 in 515.78
Freddie Mercury, lead singer with the British rock group Queen, announced that he had AIDS:
“Following enormous conjecture in the press, I wish to confirm that I have been tested HIV positive and have Aids. I felt it correct to keep this information private in order to protect the privacy of those around me. However, the time has now come for my friends and fans around the world to know the truth, and I hope everyone will join me, my doctors and all those worldwide in the fight against this terrible disease."79
The day after releasing this statement, Freddie Mercury died. He was thought to have had AIDS for two years. A widely admired performer, his death drew attention to the AIDS crisis both in the UK and abroad, and perhaps helped to reduce prejudice as people realised that HIV could affect anyone, including a figure whom they idolised and respected.
1992 History
The Department of Health made it an offence to sell, advertise or supply HIV antibody testing kits for use at home.80
The Times ran a series of articles written by Neville Hodgkinson, a medical correspondent who controversially challenged the orthodox view that HIV causes AIDS.
"But suppose the researchers are looking in the wrong place. Suppose HIV doesn't equal AIDS. Then we will have witnessed the biggest medical and scientific blunder this century.” - Neville Hodgkinson, The Times 199281
A number of other British newspapers joined in the discussion, as did all sorts of organisations and activists who had something to say on the issue.82
"But what if HIV does cause AIDS? What effect will such articles have on attempts to inform the public on safe sex, or on the people who are suffering from AIDS and taking anti-HIV drugs?" - The Independent, 199283
The Freddie Mercury tribute concert for AIDS awareness was held at Wembley Stadium and attended by 72,000 people, raising around £20 million for AIDS charities.84 Queen’s hit single ‘Bohemian Rhapsody’ was re-released and the initial proceeds - around one million pounds - were donated by the band to the Terrence Higgins Trust.85
1993 History
During January, 116 new cases of AIDS were reported in the UK, bringing the cumulative total to 7,045. One in six of these new cases were acquired through heterosexual intercourse.86
The preliminary results of the Concorde trial were released.87 They indicated that while AZT did help to slow the progression of AIDS, it was only effective when taken in the later stages of infection, and had no benefit when given to those in the early stages of infection.88
There was a media outcry after the revelation that a number of doctors in England had continued to practice medicine despite knowing that they were infected with HIV.89 The Government responded by issuing new guidelines, which stated that health care workers who were thought to have been exposed to HIV must seek medical advice and testing.90
The radio DJ and comedian Kenny Everett announced that he was HIV positive, as did Holly Johnson, former lead singer with the group Frankie goes to Hollywood.91 92
The UK Coalition of People living with HIV was launched in London. It aimed to unite people living with HIV in the UK through campaigns and research.93
The 1993 Education Act made sex education in schools statutory, including education about HIV, AIDS and other sexually transmitted infections. However, it also removed references to HIV and AIDS from National Curriculum Science, and gave parents the right to withdraw their children from sex education entirely.94
1994 History
The Department of Health vetoed an AIDS campaign promoting safer sex and condoms, developed at a cost of £2 million, on the grounds that it was too explicit.95 The HEA, who had planned the campaign, also produced a book entitled ‘Your Pocket Guide to Sex’, aimed at 16 to 25 year-olds. The book caused outcry in the media, and the Government subsequently banned it.96 Its author, Nick Fisher, could not believe how the country had reacted:
“I don't believe this government has teenagers' interests at heart, it has become a political exercise to be seen to be stamping on things that are considered rude. Have they actually thought about how many teenagers are getting pregnant, how many are screwed up because they don't know whether they are gay or straight, how many are not using condoms because they don't know where to buy them or how to use them properly? If people are so messed up about sex that they deny its existence on such a massive scale, then there really is something wrong.”97
In February the British filmmaker Derek Jarman died of AIDS. He wrote in the preface of his autobiography:
"On 22nd of December 1986, finding I was body positive, I set myself a target: I would disclose my secret and survive Margaret Thatcher. I did. Now I have my sights on the millennium and a world where we are equal before the law."98
1995 History
By the end of 1995, the overall total of reported HIV infections in the UK was 25,689. The number of reported AIDS cases was 11,872. Of this number, approximately 70% were known to have died.99
In November, the drug saquinavir was made available to people who had failed on other antiretroviral drugs, and the practice of combining it with other drugs was permitted. This was the first protease inhibitor to be made available on such a basis in the UK. Protease inhibitors are drugs that inhibit the action of an HIV protein called protease, and so slow the replication of HIV. As the UK moved into the second half of the Nineties, there was optimism that this new form of treatment could bring enormous benefits to people living with HIV.100
A second page looks at the history of AIDS in the UK from 1996 onwards.


SIDA & VIH






