The Dawn of a Plague: the First Publications of HIV/AIDS
“You can’t go back and change the beginning, but you can start where you are and change the ending” — C.S. Lewis
We are living in the age of AIDS. The last four decades has marked a turning point not just in Medicine but challenged all social and political aspects of life. I wonder if there has ever been such a political disease or one with such wide ranging ramification: civil liberty, stigma, prejudice and access to healthcare.
The Age of AIDS dawned in the early 1980s. The first warning most doctors would have received was from a single case report. Case reports tend to focus on the weird and wonderful, cases with surprising twists and turns but with actual limited learning. That’s why case reports are at the bottom of the table when it comes to levels of evidence of research. However, this one was very different.
The Morbidity and Mortality Weekly Report (MMWR) has been published weekly by the Centre for Disease Control and Prevention (CDC) since 1950. Each week they release public health information, possible exposures, outbreaks and other health risks for health workers to be aware of. One case report in particular stands out out of all of their back catalogue. It was written by various doctors from the University of California, Los Angeles and Cedars-Mt Sinai Hospital, Los Angeles. It was published on June 5th 1981:
Pneumocystis Pneumonia (PCP) is a rare form of pneumonia caused by the yeast like fungus Pneumocystis jiroveci. The fungus can live in the lungs of healthy people without causing any problems so to see it in 5 otherwise healthy young (the oldest was 36) people was odd.
Whilst the MMWR of 5th June 1981 was the first clinical publication to mention this new disease there had been a newspaper article three weeks earlier on this rare pneumonia. The New York Native was a biweekly LGBT newspaper founded in December 1980. On 18th May 1981 their medical reported Dr Lawrence D. Mass wrote a short piece entitled “Disease Rumours Largely Unfounded.” Following a discussion with Dr. Steve Phillips from the New York Department of Health Mass concluded that there wasn’t enough evidence currently that PCP was predominantly affecting homosexuals or that the homosexual lifestyle was linked to the illness.
On the same day the CDC published the MMWR the Los Angeles Times became the first national newspaper to report on the emerging disease. Their article was titled “Outbreaks of Pneumonia Among Gay Males Studied”.
Less than a month later the MMWR published further cases of PCP as well as Kaposi sarcoma in 26 previously well homosexual men in Los Angeles and New York since 1978. Kaposi sarcoma is very rare form of cancer previously seen usually in older men of Jewish/Mediterranean descent. Again it was virtually unheard of it in young men. It was suspected that something was affecting their immune systems preventing them from fighting off infections and malignancy.
On the same day this second MMWR article was published The New York Times ran with the story as well.
At the time there were many theories as to what was causing the immune systems of patients to shut down. It was felt that it was linked to the ‘gay lifestyle’ in some way leading to the stigmatising description in the media of GRID (Gay-related immunodeficiency) first used in 1982. By 1983 the disease was linked also to injecting drug users, haemophiliacs who’d received blood products and Haitians. This led to another stigmatising phrase ‘the 4H club’ (Homosexuals, Heroin addicts, Haemophiliacs and Haitians).
In 1982 however, the CDC had actually given it a proper name: ‘Acquired Immune Deficiency Syndome’ or ‘AIDS’.
It was only in 1982, when the disease had been seen in heterosexual patients that an article was run in The Wall Street Journal on February 25th: ‘’New, Often-Fatal Illness in Homosexuals Turns Up in Women, Heterosexual Males.’’
The fact it was being transmitted to blood product recipients suggested the cause had to be viral as only a virus could pass the filtration process. In 1983 two rival teams, one American and one French, both announced they had found the virus causing AIDS with ongoing debate as to who got there first. Each team gave it a different name. In 1985 a third one was chosen: ‘Human Immunodeficiency Virus’ or ‘HIV’. By that time the virus had spread not just in America but in Canada, South America, Australia, China, the Middle East and Europe. Since 1981 worldwide more than 70 million people have been infected with the HIV virus and about 35 million people have died of AIDS.
The MMWR of 5th June 1981 is now widely recognised both as the beginning of the HIV/AIDS pandemic and as the first publication of HIV/AIDS. Although only a case report it shows the value of these publications at the front line. But it is Dr. Mass’s article which is the first publication of any type known worldwide. It is difficult not to feel sad looking back at those words realising how little people knew. How they couldn’t appreciate the scale of the problem, the dawning of the plague. But they are a lesson too. Only by recording and publishing the ‘weird and wonderful’ can we start to share practice, appreciate patterns and spot emergent diseases.
Thanks for reading
Originally published at mcdreeamiemusings.com.