Dealing with stigma and raising public awareness in the early days of AIDS in the UK

As part of our ongoing collecting focus on the history of HIV and AIDS, in 2025 we undertook two oral history interviews with key figures in the UK response to HIV in the 1980s: Professor Dame Anne Johnson and Lord Norman Fowler. 21 July is Zero HIV Stigma Day, and we reflect on the content of these interviews.

Prof Anne Johnson became aware of the first cases of AIDS in the UK when she was doing her master’s degree in public health. She was the only applicant for a lectureship specialising in the epidemiology of AIDS with Drs Mike Adler and June Crown at the Middlesex Hospital, London in 1983, and was told at the time that studying HIV might ruin her career. She notes that in 1982 the prevalence of HIV in stored blood samples at the Middlesex Hospital was 3% but by 1984 it had risen to 18% and most of this epidemic was hidden, as people were scared to come forward for testing because of the stigma of the disease and association with homosexuality. In addition, some of those infected were at the asymptomatic stage of the disease.

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“Well, my first real memory of going to a lecture about AIDS, HIV was actually before the virus was named, it would have been in 1983 at the London School of Hygiene where I was doing a masters in Public Health as part of my high professional training in medicine. And of course, the first case of AIDS, described 1981, so this was a couple of years later, and at that time there was a lecture from the Communicable Disease Surveillance Centre, then run by Spence Galbraith and I think the first probably dozen or so cases of AIDS in the UK were presented at that meeting, and I remember the lecture theatre being absolutely stuffed to the guns, people sort of had a, you know a, fascination and a fear as well of the disease at that time”

“I was involved in studying the epidemiology of HIV so as part of my public health training I really wanted an academic job and as things happen, quite by chance, I met somebody who knew someone who was working for a professor called Mike Adler at the Middlesex Hospital who still remains a great friend of mine and has been a mentor and guide throughout my career. And he was looking for someone to train in public health alongside June Crown who was subsequently the president of the faculty, then it was called the faculty of community medicine I think, which is part of the RCP. And they were looking for a lecturer to study the epidemiology of HIV and sexually transmitted diseases, and I think I was the only applicant, and that was for two years as a lecturer and the rest is history”

“And what we then came to discover from our research at the Middlesex (Hospital), is that through anonymous unlinked testing, the first tests of stored blood samples for HIV, we could show that in 1982 already the prevalence, the proportion of people infected coming into the clinic at the Middlesex Genital and Urinary Medicine centre was 3% in 1982 and by 1984 that had risen to about 18%. So that is a massive incidence of new infections, most of which was hidden because of course the initial phases were often asymptomatic or non-specific. So not only was there a massive hidden epidemic going on, which was so common, but because of the stigma, of course people were not coming forward; they were frightened to be tested; there was a stigma around testing; there were issues around insurance and so on. So the stigma was incredible and that has changed dramatically in the last 40 years.”

Prof Johnson became involved in leading in the National Survey of Sexual Attitudes and Lifestyles, and this research is still ongoing showing that public attitudes have changed hugely in the intervening years¹. She took part in the national public health campaign launched by the government in 1987 to raise awareness and educate the population on spread of the disease. From a government perspective this was led by Prof Donald Acheson who was appointed Chief Medical Officer in 1983, just as AIDS was emerging. He worked with Norman Fowler who was Secretary of State for Social Services from 1981 to 1987 in Margaret’s Thatcher’s government. Fowler had difficulty in persuading Margaret Thatcher of the importance of, and necessary information that should be disseminated by the campaign. This antagonism for the campaign centred of the description of risky behaviour, Thatcher being concerned that it would teach young people of risky sexual practices that they wouldn’t otherwise know about.

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“I mean honestly one of the chief opponents was Margaret Thatcher, and it’s not good to have the Prime Minister against you when you’re doing a campaign of this kind. Her argument was, that we were going to teach young people things that they knew nothing about and were never likely to come across, which is sort of an objection you can make to any public health campaign. So we had to contend with that, and it’s a long story of how we did it.”

Norman Fowler confirmed in his interview that Donald Acheson was keen on a straightforward honest campaign. Finally, working with Willie Whitelaw, chair of the Cabinet committee, they got the campaign approved. The first advertisements ran in newspapers in March and April 1986. These were followed in 1987 by the AIDS: Don’t Die of Ignorance campaign which was the biggest UK public health campaign ever mounted. Two iconic television advertisements were produced – the ‘tombstone’ or monolith advert with voice over by John Hurt, and the ‘Iceberg’ advert in which the word AIDS in giant print was shown beneath the surface of the water. The primary focus of the media campaigns was to educate and have impact. Fowler suggests they were not intended to scare, but many people today remember the tombstone and doom-ridden intonation in the advertisement as frightening.

The wording of the televised advert says of AIDS ‘It is a deadly disease and there’s no known cure. The virus can be passed during sexual intercourse with an infected person. If you ignore AIDS, it could be the death of you'. This was accurate at the time, but almost 40 years later the progress made in HIV medication means that HIV infection has become a chronic disease, not a death sentence, and 97% of those diagnosed and on treatment are virally suppressed so can’t pass it on.

Alongside the newspaper and TV campaign, a household leaflet² circulated to homes explained clearly ‘The true picture about AIDS is that at the moment relatively few have the virus in this country. Those most at risk now are men who have anal sex with other men. Drug misusers who share equipment. Anyone with many sexual partners. And sexual partners of any of these people. But the virus is spreading. And as it does the risk of having sex with someone who is infected increases.’ Suggested further sources of information included the Terrence Higgins Trust, which played a major role in producing targeted information and offering support from 1983 onwards.

Back in 1987 feedback from the public was positive Fowler notes, and they were not outraged as some had feared.

Transcript

“The feedback from the public from memory was ok. I mean one of the initial fears was that the public would be outraged, well the public in general weren’t outraged they thought it was quite sensible. I mean they quite liked the idea that someone was actually taking this seriously. But it was one of the problems of this area that we should have done more consistent polling. What I would have liked, loved, to have done what we missed out on doing, I’d left by this stage, was having a survey of the whole campaign carried out objectively which would have been brilliant but there was no chance of, you know, getting that passed the Prime Minister.”

Government archives are now accessible for the period detailing Acheson’s and Fowler’s role, and there are government papers showing Margaret Thatcher’s strong opinions in the handwritten marginalia. Prof Johnson viewed these documents at the National Archive Centre ahead of giving the Harveian Oration in 2022 on ‘Pandemic HIV and its legacy for medicine and global health’³, and describes Thatcher’s attitudes to the Sexual Health Surveys and advertising campaign.

Transcript

“Of course I gave the Harveian oration on this work and for that I went down to the National Archive to look at the then Prime Minister Margaret Thatcher’s papers, which was a fantastic moment in my life. Because I had never really understood the story behind the survey being banned. So I was able to find in the archive, her papers and the papers that had gone to her by civil servants. And history comes alive, moments, I relive those moments seeing her handwritten writing, quite neat and legible, in the margins about her views about the sex survey being carried out and her views about the public health campaigns. And she really thought this was an intrusion and I could probably find the words for you precisely but she made it, she didn’t want there to be public funding of the, that no government funding would be, should be spent on such a survey because this was, you know, politically inappropriate and scientifically inappropriate. So that was a real moment, and there were a lot of annotations actually on several aspects of the epidemic in those papers and on other documents that were produced.”

Impact of the campaign

After the 1987 campaign a Gallup Poll showed that 98% of the public were aware of how AIDS was transmitted. There is evidence of a significant effect on infection rates as in 1990 these were below those in similar nations, such as France and the USA.

Attitudes today

Prof Johnson reflects on the situation today¹. Attitudes have changed but some stigma persists. The involvement of the gay community in the Terrence Higgins Trust and other patient led organisations over many decades, and powerful impact of the ACT-UP activist campaigns have had substantial positive effect compared to the dark days of the 1980, and care for HIV has been revolutionised in the UK.

The story is not currently encouraging elsewhere in the world as the abolition of USAID and other initiatives have affected multiple HIV studies, and preventative and treatment plans in Uganda, South Africa, Tanzania, Kenya, Zimbabwe, Democratic Republic of Congo, and South Sudan across Africa, and also in Ukraine. The aim is to mitigate loss in funding by a shift to localised/Government to Government aid.

Lord Norman Fowler still works as a UN Ambassador for HIV/AIDS and comments on the US administration’s defunding actions, and current attitudes and the cuts in overseas aid in the UK.

Transcript

Interviewer – “Having stepped down as speaker in the House of Lords, are you an ambassador for HIV and AIDS, how is that working now for you and what does it involve you doing”

Fowler – “Well it was working ok, but now of course the real problem is now we don’t know quite where we are with the amount of aid which going in internationally. And I think well basically we are in a problem now, potentially a serious problem, and in some countries very similar to the problems that we had earlier on in this country. I don’t, you can’t simply switch off a programme and pretend it doesn’t have any impact, it does. It’s got to be a consistent programme, particularly when you’re dealing with issues like dissuading people to get tested in the first place, which you know, we succeed a little in doing. But there are governments who are simply opposed to it all and are not prepared to, not prepared spend money on it or resources on it but are positively opposed to the whole thing. So we are back to square one, and with Trump’s changes the amount of money going into AIDS has reduced substantially already, I don’t know how long he’ll stay, but it’s quite likely to have a permanent effect.”

Anita Simonds, Harveian Librarian and Sarah Lowry, Oral History Officer

You can find out more about the history of HIV and AIDS as well as about the current landscape by listening to this episode of the RCP Medicine Podcast. The full interviews with Dame Anne and Lord Fowler are available via our library catalogue.

1. UK Data Service. National Survey of Sexual Attitudes and Lifestyles. https://datacatalogue.ukdataservice.ac.uk/series/series/2000036#abstract [Accessed 20 July 2026]

2. Douglas E. World AIDS day 2025. RCP museum blog 1 December 2025. https://history.rcp.ac.uk/blog/world-aids-day-2025 [Accessed 20 July 2026]

3. Johnson AM. Pandemic HIV and its legacy for medicine and public health. Clinical Med 2023:23;106-14. https://rcp.soutron.net/Portal/HeritageLibrary/en-GB/RecordView/Index/95929 [Accessed 20 July 2026]

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