30 years of AIDS: remembering how it began - from those who were there

A huge red ribbon in San Francisco to mark the 30th anniversary, installed by over 100 community volunteers. Image courtesy of San Francisco AIDS Foundation (www.sfaf.org)
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Sunday June 5 sees the 30th anniversary of the first reports of the disease that later came to be known as AIDS.

At the time no one could have anticipated the scale of the epidemic that was about to emerge, or the global significance of the cases that were being reported among young gay men in California and New York.

The emergence of the epidemic was a shocking, epochal event, and it had a devastating impact on gay communities and injecting drug users in North America.

Glossary

safer sex

Sex in which the risk of HIV and STI transmission is reduced or is minimal. Describing this as ‘safer’ rather than ‘safe’ sex reflects the fact that some safer sex practices do not completely eliminate transmission risks. In the past, ‘safer sex’ primarily referred to the use of condoms during penetrative sex, as well as being sexual in non-penetrative ways. Modern definitions should also include the use of PrEP and the HIV-positive partner having an undetectable viral load. However, some people do continue to use the term as a synonym for condom use.

case report

Describes the medical history of a single patient.

Pneumocystis carinii pneumonia (PCP)

Pneumocystis carinii pneumonia is a form of pneumonia that is an AIDS defining illness.

Kaposi's sarcoma (KS)

Lesions on the skin and/or internal organs caused by abnormal growth of blood vessels.  In people living with HIV, Kaposi’s sarcoma is an AIDS-defining cancer.

pneumonia

Any lung infection that causes inflammation. The infecting organism may be bacteria (such as Streptococcus pneumoniae), a virus (such as influenza), a fungus (such as Pneumocystis pneumonia or PCP) or something else. The disease is sometimes characterised by where the infection was acquired: in the community, in hospital or in a nursing home.

But it was the responses of the communities affected, and of the medical professionals who cared for the first people diagnosed with AIDS, that set the tone for the global response to AIDS for the next 30 years.

It was a response emphasising human rights, compassion, solidarity, activism and generosity, and without it, the global epidemic of HIV and AIDS might have been handled in a much more punitive and authoritarian manner.

Therefore, we have chosen to commemorate the 30th anniversary of the first case report by collecting together resources that illuminate the early days of AIDS.

The links below will lead you to testimony from people who lived through the early years of the epidemic, many of them central to the early responses in the gay communities of North America.

The first report of AIDS cases – Pneumocystis pneumonia in five young men, June 5 1981. The first case report.

A Cluster of Kaposi's Sarcoma and Pneumocystis carinii Pneumonia among Homosexual Male Residents of Los Angeles and Orange Counties, California, June 18, 1982; the first strong endorsement for the view that AIDS was caused by a sexually transmitted agent.

We Were Here –an award-winning documentary on the early years of AIDS in San Francisco and the city’s response.

The History of AIDS: Emergence and Origins of a Modern Pandemic, by Mirko Grmek. Still the best book on the early history of the epidemic, now available in large portions through Google Books to read online.

Gay Men’s Health Crisis: Dr Lawrence Mass, one of the six founders of Gay Men’s Health Crisis, New York’s first AIDS organisation, reflects on the origins of the organisation in the activism of its six founders.

AIDS begins to emerge in new populations: Dr John G. Bartlett looks back at the emergence of AIDS in injecting drug users in Baltimore, and his efforts to establish a clinic to provide care at Johns Hopkins University.

How to Have Sex in an Epidemic: the first safer sex advice, authored in May 1983 by New York activists Richard Berkowitz and Michael Callen. The leaflet set the tone for gay community responses to safer sex worldwide. You can also watch an interview with Richard Berkowitz and Dr Joe Sonnabend, their medical adviser, about the origins of safer sex advice, on YouTube from Jean Carlomusto’s film Sex in an Epidemic.

San Francisco AIDS Foundation: a video on the impact of AIDS in San Francisco since 1981 and the civic and political response to AIDS in the city.

The San Francisco AIDS Oral History Series:  a unique archive of interviews with people involved in the early years of AIDS in San Francisco; the sequence of interviews on the medical responses is available here.

AIDS @ 30: Media Coverage From the Early Days: a collection of TV broadcasts from the 1980's, compiled by The Body.