history of HIV/AIDS
by John Illman
Terry Higgins' death on 4 July 1982 was the first in Britain to be officially attributed to AIDS – and marked a turning point in medical history. Angered by his 'unsympathetic' treatment by doctors, a group of his friends formed a trust in his memory to provide support for people with HIV/AIDS.
© www.johnbirdsall.co.uk
The Terrence Higgins Trust, which quickly established itself as one of Britain's leading charities, commemorated the 20th anniversary of his death with a major programme about the history of AIDS and the trust itself. The trust has played a prominent role in promoting 'patient power'. It is part of an international lobby which has been a catalyst not only for thousands of advocacy groups for HIV/AIDS patients, but also for those with a wide range of other diseases – from depression to breast cancer.
This seems all the more remarkable in light of the initial hysterical reaction in the early 1980s against people with HIV who were judged 'to have brought AIDS upon themselves'. With no effective treatments available, many feared that they would be left to slowly die – victims of discrimination as well as disease.
virus of fear and hysteria
Hostile reaction came from unlikely quarters. Clergymen were reported to be turning away people with AIDS for fear that any contact would be dangerous. Doctors refused to carry out post mortems. Nurses were told that they must be prepared to nurse AIDS patients or face disciplinary proceedings. Fire fighters refused to carry out mouth to mouth resuscitation. Prison officers refused to allow the movement of prisoners with HIV/AIDS either in or out of Chelmsford prison. The Home Office was asked to segregate all homosexuals and drug addicts. Police in Scotland burnt and compressed a car that had been stolen by a suspect believed to be HIV-positive. Parents of children at a Hampshire primary school kept them at home to avoid exposure to an HIV-positive nine-year-old boy with haemophilia. Dons at an Oxford college banned a centuries old tradition of passing a 'loving cup' of wine around the table at the college's annual dinner, even though there was no scientific evidence that HIV could be spread in saliva.
AIDS was proclaimed as the wrath of God on homosexuals. James Anderton, Chief Constable of Manchester and a born-again Christian, condemned modern society as a 'swirling human cesspit' and AIDS as 'a self-inflicted scourge'.
Cardinal Ratzinger of the Roman Catholic Church described homosexuality as an abomination, recalling the destruction of the biblical citizens of Sodom and Gomorrah as a punishment for licentious behaviour. Cardinal Basil Hume insisted that 'people must cut out sexual permissiveness and promiscuity if the AIDS epidemic is to be contained'.
the strong medicine of patient power
Despite the vehemence of such attacks, the HIV/AIDS lobby united to make HIV/AIDS a prominent political issue. The initial impetus came in the early 1980s from the AIDS Coalition to Un-Leash Power (ACT-UP) which campaigned for more resources and support for sufferers.
Acclaimed as the most significant 'direct-action' campaign in the US since the anti-Vietnam war movement in the 1960s, ACT-UP was arguably the single most important development in patients' rights in the 20th Century. Dr Cathy Read, author of Preventing Breast Cancer: The politics of an epidemic, said: 'The successes of AIDS activists convinced breast cancer survivors of the powers of political action. Not only have women adopted similar lobbying tactics. Many now talk of 'coming out' when they tell family and friends of a breast cancer diagnosis.'
the struggle for gay rights
What made ACT-UP such a success? One of the early AIDS activists, Larry Kramer, the Oscar-nominated screenwriter of Ken Russell's Women in Love, observed: 'The group is, for me, infinitely moving because it is composed mostly of such young people.
'These are men and women, some barely in their 20s, who have a comfort with their homosexuality that I never had at that age… and a desire to be politically active that, at such a young age, for such large numbers, is actually historically new and important in the struggle for gay rights.'
The AIDS movement quickly became international and expert, with many patients knowing as much as doctors about new treatments both here and abroad. In Britain, Julian Meldrum, then editor of Body Positive Newsletter, said: 'You still get people saying the NHS is the best system in the world – usually people who don't know about other systems. Our patient groups know that the French, for example, have much better access to anti-viral treatments much earlier, and that the death rates in France have fallen faster. The diagnostic access is better. The hospitals are better.'
the activists and the first treatment for HIV/AIDS
The patient power revolution had a major impact on the British pharmaceutical industry. As Director of Research and Development at Wellcome (now called Glaxo SmithKline) in Britain in the early 1980s, Dr Trevor Jones was responsible for developing azidothymidine (AZT), the first treatment for HIV/AIDS.
The development programme was put at risk because, for the very first time, a group outside the medical profession and the pharmaceutical industry was challenging the protocols of clinical trials.
Recognising that the new medicine might do some good, they did not want to be kept in the dark about the design and structure of the trials. Dr Jones took the unprecedented step of inviting a group of AIDS activists into the research laboratories because volunteers had been mixing the active drugs with placebos – compromising the scientific basis of the trials.
He faced vehement opposition from colleagues, but says: 'We had to do it. When the activists arrived, there was anger, but the anger was basically a cri de coeur. They were saying: "Help me. I have a problem and you may or may not be able to help. But it's my life, and I want to be involved in the decisions." That changed the way we thought about things.'
denying patients information: official NHS policy
'From that moment, I knew we must involve patients. It reminded me of my first job in pharmacy, when I put labels on bottles stating: "Tablets to be taken three times a day". If a patient asked what the tablets were, I was supposed to say: "I'm not allowed to tell you."'
Yes – denying patients information used to be official NHS policy. It is not so long ago that hospital notes were stamped: 'Not to be seen by the patient'.
The Department of Health is now inviting patients to join the NHS information revolution and become so-called 'informed' or 'expert patients'. The Terrence Higgins Trust has played a major role in this revolutionary change, but it still has a long way to go in realising one of its initial aims – eliminating discrimination. The dramatic hysteria of the '80s may have evaporated, but in a report in November 2001, Prejudice, Discrimination and HIV, the trust reported that one in five people with HIV had experienced discrimination because of their HIV status within the previous 12 months.
Mary, for example, shared a house with three women. Returning home she found every cup and plate in the house had been broken and put in the bin. One of her house-mates had found out that Mary had HIV and this had been her reaction.
However, if Terry Higgins had developed HIV/AIDs today, it is extremely unlikely that he would be treated in the same unsympathetic way as he was in the early 1980s. Things have moved on – thanks to the trust which keeps his name alive.
Advances extend far beyond sympathetic treatment. HIV/AIDS treatment has been revolutionised – thanks to combination therapy, known as HAART (highly active Anti-Retroviral Therapy). Studies have shown that three-drug combinations of anti-HIV drugs are much more effective than one drug or two drugs.
Before the introduction of combination therapy about five years ago, some people with HIV 'blew everything' in the belief that it was an automatic death sentence. One man in his early 30s, a former secretary, expected to die within two years of developing full blown AIDS.
He recalled: 'I had no dependants and I didn't want to die with savings in the bank. ' Supplementing his savings with a bank loan, he went to Europe, the Middle East, Far East and travelled extensively in the USA.
Then he returned home to die, his funeral arranged down to the last detail. But the characteristic violet skin lesions of Karposi's sarcoma, an AIDS-related illness faded. Rather than dying, he looked slim and fit, and was soon visiting the gym at least twice a week.
What difference has HAART made to life expectancy? A Terrence Higgins Trust spokesperson said: 'It's hard to say. We don't know what the long-term effects of these drugs will be. They were only introduced about five years ago. Although the effects of the new combinations have been dramatic, there are already people who are resistant to all the available combinations.
'Another complication is that newly infected people develop drug resistant strains. It's as if the virus is trying to keep one step ahead of science. But in their turn the researchers are trying again to turn the table against the virus.'
key dates in the history of HIV/AIDS
1981: The Morbidity and Mortality Weekly Report (MMWR) from the US Center of Disease Control in Atlanta reported that a rare form of pneumonia had killed five young gay men in Los Angeles.
1981: A survey of blood samples of 100 gay men at St Mary's Hospital, London, showed many immune cell abnormalities. The men showed a decreased ability to fight off disease.
1982: Death of Terry Higgins: the first Briton whose death was attributed to AIDS.
1982: Formation of Terrence Higgins Trust.
1983: First British cases of AIDS among patients with haemophilia, a rare blood disorder: they received contaminated blood products.
1983: Publication of the first scientific paper describing the AIDS virus.
1985: At a time when there were only 108 confirmed cases in Britain, the Royal College of Nursing forecast that a million people in Britain would develop AIDS unless current trends were checked.
1986: The International Committee on the Taxonomy of Viruses recommends the use of the term human immunodeficiency virus (HIV).
1986: The first government AIDS campaign is launched in Britain in the form of full-page national newspaper advertisements.
1987: More than half the people with severe haemophilia in Britain, France, West Germany and Australia are reported to have been infected by HIV. In the US the figure is close to 100%.
1987: The first HIV/AIDS drug, azidothymidine (AZT), is launched in Britain.
1993: UK launch of Positive Lives – a unique photographic exhibition showing different images from around the world of people with and connected to HIV/AIDS.
1996: Introduction of 'combination therapies' resulting in a dramatic increase in the life expectancy of people with HIV/AIDS.
1999: An estimated 2.6 million people were reported to have died from AIDS in 1999.
2000: Prince Charles visits London Lighthouse, the pioneering, purpose built, palliative care and support centre for people with HIV/AIDS.
2000: The Public Health Laboratory Service estimated that the number of people living with diagnosed HIV infection was rising by at least 10% a year.
2002: The Terrence Higgins Trust marked 20 years of HIV and AIDS in the UK with a variety of events and activities.
2003: UN Secretary General Kofi Annan warns that the world is losing the war against Aids. 5 people worldwide die of AIDS every minute and it is estimated that 42 million men, women and children are living with HIV/AIDS in the world today.
help and info
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organisations
Terrence Higgins Trust
52-54 Grays Inn Road
London WC1X 8JU
Helpline: 0845 1221 200 (Mon-Fri 10am-10pm, Sat-Sun 12-6pm)
E-mail: info@tht.org.uk
Website: www.tht.org.uk
Offers a wide range of free and confidential services for people with HIV, including specialist advice and representation on welfare rights, housing and legal matters, practical help and befriending.
Positively Healthy UK
1 Princes Street
Richmond TW9 1ED
Tel: 020 8977 4411
E-mail: info@posh-uk.org.uk
Website: www.posh-uk.org.uk/homepage.html
Founded in 1986, this is a gay men's holistic HIV/AIDS charity, managed and run by its users who are all HIV positive or diagnosed with AIDS. They run various HIV-related projects, support groups and workshops and there is lots of reading material available on the website.
Sexual Health Line
Tel: 0800 567 123 (24 hours)
Textphone: 0800 521 361
Gives confidential advice and information about STIs or any other aspect of sexual health. Can also tell you where to find local sexual health services.
websites
ACT UP – AIDS Coalition to Unleash Power
www.actupny.org
ACT UP is a diverse, non-partisan group of individuals based in New York, united in anger and committed to direct action to end the AIDS crisis. ACT UP advises, informs and demonstrates.
aidsmap
www.aidsmap.com
Information, news and resources for people with HIV and AIDS, community organisations and professionals. Features extensive information on treatments plus a searchable database of HIV clinics in the UK.
All-Party Parliamentary Group On Aids
www.appg-aids.org.uk
Founded in 1986 with the stated objectives of raising awareness in Parliament, encouraging balanced policies and acting as a bridge with the HIV sector.
AVERT
www.avert.org
Contains HIV and AIDS statistics, information for young people, personal stories, a history section, information on becoming infected, a young and gay section, and free resources. Features an article called HIV & AIDS: Stigma and Discrimination.
Condom Essential Wear
www.condomessentialwear.co.uk
For more information on condoms, sexual health, how to protect yourself from STIs and how to find your nearest GUM Clinic.
Metromate
www.metromate.org.uk
London's sexual health directory for gay men. Includes a comprehensive list of helpline numbers.
The National AIDS Trust (NAT)
www.nat.org.uk
Aims to promote a wider understanding of HIV and AIDS, develop and support efforts to prevent the spread of HIV, and improve the quality of life of people affected by HIV and AIDS.
NHS
www.nhs.uk
The official gateway to National Health Service organisations on the Internet. Includes a guide to the NHS outlining what patients can expect, and a section called Patients' Voice.
reading
The Expert Patient by John Illman (Association of the British Pharmaceutical Industry, 2000) |
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The No Nonsense Guide to HIV/AIDS by Shereen Usdin (Verso Books, 2003) |
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HIV and AIDS in Africa: Beyond Epidemiology by Ezekiel Kalipeni, Susan Craddock, Joseph Oppong and Jayati Ghosh (Eds) (Blackwell Publishers, 2003) |
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What If Everything You Thought You Knew About AIDS Was Wrong? by Christine Maggiore (Independent Publishers Group, 2000) |
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(updated May 2003, resources updated February 2005)
