September 16, 2020 05:01:51
A mystery figure walks through the streets of Sydney. (ABC Science: Ben Hay/City of Sydney Archives CC BY 4.0)
This man’s death was a mystery for more than a decade. Then a young doctor figured out what had killed him and rewrote Australia’s medical history in the process. We will probably never know how Harvey* caught the disease that killed him.He was 72 years old, lived on his own in central Sydney and had never travelled overseas.We don’t know a lot about Harvey. There is not a lot of detail about his life in case notes, no mention of next of kin or any hospital visitors. We don’t even know his real name.But we do know he became unwell in February 1981, when he started to feel tired, have night sweats, and lose weight. By July, he was short of breath and had developed a bad cough.His GP tried him on various medications but when none of them worked, he was sent to the Royal Prince Alfred Hospital.Harvey arrived there August 1981 — thin, frail and feverish.
The man became sick in 1981 and was sent to the Royal Prince Alfred Hospital. (Supplied: Mitchell Library, State Library of New South Wales and SEARCH Foundation (CC BY 4.0))
He arrived there thin, frail and feverish. (Supplied: Mitchell Library, State Library of New South Wales and SEARCH Foundation (CC BY 4.0))
The man had no visitors and no known family. (Supplied: Mitchell Library, State Library of New South Wales and SEARCH Foundation (CC BY 4.0))
For years, his cause of death was a mystery. (Supplied: Mitchell Library, State Library of New South Wales and SEARCH Foundation (CC BY 4.0))
Doctors noted he had an enlarged spleen and inflamed lymph nodes, but when they performed biopsies on both, neither test revealed much.Later, as Harvey’s condition got worse and he struggled to breathe, doctors took tissue samples from his lungs.He was diagnosed with pneumocystis pneumonia, a rare but serious lung infection that tends to affect people with weakened immune systems.The doctors then started him on antibiotics — but they couldn’t work out exactly what was making him so unwell.When he died of lung failure in September, seven months after falling ill, there were no contacts for the hospital to call.The cause of Harvey’s death remained a mystery for more than a decade. But his treating doctor, Barrie Mayall, kept the case notes in the top drawer of his desk.Then one morning, almost 12 years later, Dr Mayall received a call from a young medical researcher to say he’d discovered the cause of the man’s death — and in doing so, had rewritten the early history of HIV/AIDS in Australia.Early days of an epidemicAround the time Harvey was unwell in Sydney, a small cluster of similar, unexplained cases of pneumocystis pneumonia was also surfacing in Los Angeles, California.Five young, previously healthy gay men were diagnosed with the same rare form of pneumonia. By the time the cases were reported in June, two of the men had already died.Not long after, more unexplained cases of pneumonia began to show up among gay men, as well as cases of a previously rare skin cancer called Kaposi’s sarcoma.
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Case numbers in the US quickly grew, and by the year’s end, there were multiple reports of gay men with severe immune deficiency — some of whom had already died.Their deaths came as a shock to a community enjoying newfound, hard-won sexual liberation after decades of discrimination. In cities like New York and San Francisco, there was a vibrant and burgeoning gay scene.In Australia, male homosexuality had been decriminalised in South Australia, the ACT, and Victoria. And the Sydney Gay and Lesbian Mardi Gras was beginning to take shape. Phil Carswell, a gay activist and high school teacher living in Melbourne at the time, said homophobia was still rife, but the tide was beginning to turn.”You had the dark side of it, the stigma and discrimination … the risks of arrest and physical assault,” he says. “Apart from that, if you could dodge those bullets, then life was good.” But by 1982, news of the mysterious new illness circulating in the US had begun to make its back way to Australia.Qantas flight attendants told Phil and his friends that in America, gay men were getting sick.”They were describing … frailty, disease. People disappearing. Friends just not turning up anymore,” says Phil.”The change was like a change in the weather.”You felt the temperature go down and the black clouds started forming on the horizon and then suddenly it was pouring.” Australia’s first diagnosisBy September 1982, a little more than a year after those first reported cases in Los Angeles, 593 Americans had become ill and 243 of them had died.Media outlets began using the term GRID — Gay Related Immune Deficiency — to describe the new epidemic.But the illness wasn’t confined to the gay community: drug users, haemophiliacs, and blood donor recipients were affected too.And so the Centre for Disease Control in the US coined the term AIDS — Acquired Immune Deficiency Syndrome.In December, an American tourist reported to St Vincent’s Hospital in Sydney with a bad cough and other infections.
Doctors at St Vincent’s believed the American man was the first case of AIDS in Australia. (Supplied: AW Rosemen/City of Sydney Archives (CC BY 4.0))
Professor Ron Penny, who led the hospital’s immunology unit, sent blood samples to the CDC in Atlanta, where it was confirmed the man had AIDS. He returned to America in 1983 and died a few weeks later.It was the first time AIDS had been diagnosed in Australia. But was the American tourist actually the first person to be infected, as doctors believed?Spreading the messageFollowing the first, widely publicised case at St Vincent’s Hospital, a handful of AIDS cases were reported in Australia in 1983.Little was known about the disease and, in the absence of knowledge, fear and misinformation spread.Terms like “gay cancer” and “the gay plague” were splashed across newspapers. Some media outlets and politicians depicted gay men as irresponsible and immoral, and speculated that the illness was caused by “lifestyle factors”.With the death toll climbing in the US, and case numbers rising locally, leaders of the gay community in Sydney and Melbourne began to mobilise.”We booked the auditorium at the Royal Dental Hospital opposite Melbourne Uni, and we had a panel of eight doctors on the stage and over 400 people in the room,” says Phil.”It was the most number of gay people I’d seen in Melbourne in one place ever.”
Newspapers referred to AIDS as “the killer plague” or “the gay plague”. (Supplied: Australian Lesbian and Gay Archives)
An early meeting of activists: Phil Carswell (centre), with Adam Carr and Ian Hunter in 1983. (Supplied: Thorne Harbour Health)
An info night held at Melbourne’s Royal Dental Hospital in 1983 drew a huge crowd. (Supplied: Australian Lesbian and Gay Archives)
It wasn’t clear yet how AIDS was spreading, but community activists quickly got to work trying to spread the message: sexual contact and exposure to blood were risky.Weathering the stormBetween 1983 and 1985, HIV spread rapidly among 4,500 Australians, mostly gay men in the inner suburbs of Sydney and Melbourne.By then, researchers had identified the Human Immunodeficiency Virus, and it was clear that HIV — left untreated — was the cause of AIDS.Phil says the network of volunteer carers that had been set up to support people living with AIDS quickly became overwhelmed.”Some people just needed a lift down to the chemist … or their dogs walked, or food cooked,” he says.”But some were really sick and wanted to die at home, so the support workers did remarkable stuff — they cleaned up the vomit and the blood and the shit, and they made the house function.”This community response meant many people dying of AIDS were surrounded by support in their final days. It was a different picture to the lonely hospital bed where Harvey died of his illness.
Activists Bill Rutkin, Peter Lodden, Greg Tillett and Phil Carswell meet with federal health minister Neal Blewett (centre). (Supplied: Phil Carswell)
Australian health authorities, determined to not go down the same path as the US — where the situation was growing increasingly dire — placed the expertise of gay men and other people affected by HIV at the centre of the public health response.Instead of promoting messages of abstinence and ignoring the realities of how HIV was spreading, prevention and education became key pillars of the response.Community-led sex ed campaigns were launched, and needle and syringe exchange programs were introduced. Later, HIV testing and screening became widely available.
Instead of promoting abstinence, campaigns were more practical and realistic. (Supplied: Thorne Harbour Health)
Condoman was created by Indigenous sexual health workers for their own community. (Supplied: Australian Lesbian and Gay Archives)
Greg Tillett, the president of the AIDS Council of NSW, with one of the safe sex posters targeted at gay men. (Supplied: Australian Lesbian and Gay Archives)
Within a few years, Australia achieved one of the fastest and most successful responses to HIV/AIDS in the world.By 1986, rates of new HIV infections had dropped considerably, but it would take some time for the number of AIDS deaths to fall. “The individual grief [of losing] a close friend or lover was bad enough,” says Phil.”When you had an address book with most of the names scratched out, that’s when the cumulative loss really struck.”There was sadness by the bucketful.” Rewriting AIDS historyIn 1993, John Gerrard was working as a junior doctor at the Royal Prince Alfred (RPA) Hospital when he began a research project on pneumocystis pneumonia — which was, by then, strongly associated with HIV/AIDS.”It was the peak of the epidemic in Australia and as a young doctor, I was seeing pneumocystis pneumonia, mostly in young gay man, every day of my working life,” Dr Gerrard says.
John Gerrard was training to be an infectious diseases specialist in the 1990s. (Supplied: John Gerrard)
Going through old records of pneumocystis pneumonia patients seen at RPA, Dr Gerrard stumbled upon Harvey’s case. Reading the case notes, he thought Harvey’s symptoms seemed familiar.”I looked through the detailed description of this man’s illness … and I thought, ‘well, if this man had come to my hospital today, I would have no hesitation in saying that he had AIDS.'”But there was one small problem: AIDS wasn’t thought to exist in Australia when Harvey died.Fortunately for Dr Gerrard, some of Harvey’s tissue had been preserved from an operation he’d had a year earlier.Dr Gerrard contacted a French molecular biologist with experience in identifying HIV in tissue samples, and convinced him to take a look.”When he phoned me and told these results … I thought that it all suddenly makes sense,” Dr Gerrard says.”It was clear both from the clinical history and from the laboratory results that this man had, in fact, died of AIDS in September 1981 in Sydney.”Harvey became Australia’s earliest known case of AIDS, and pushed back the timeline of HIV in Australia by more than a year.Dr Gerrard managed to track down Dr Mayall, who had treated Harvey in 1981, but didn’t expect he would remember the case.”I telephoned him … and mentioned the story. He knew exactly what I was talking about,” Dr Gerrard says.It turned out Dr Mayall had written a manuscript about the case back in 1981, but had never published it.”He said, ‘I wrote that manuscript about this patient because I didn’t know what was wrong with him, and I thought we discovered something new and unusual.'”What we’ll never knowDr Gerrard published the discovery in the Medical Journal of Australia in 1994 — and in doing so, rewrote part of the history of HIV/AIDS in Australia.Yet still, most histories begin in 1982, with the case identified by Professor Penny.”Ron Penny described the case at the time … and was treating [patients],” says Dr Gerrard. “I was just a young doctor looking back at records and discovered this case a decade later.”
John Gerrard now works as the director of infectious diseases at the Gold Coast University Hospital. (ABC RN: Eliah Lillis)
Dr Gerrard’s work pushed back the timeline of HIV in Australia by more than a year. (ABC RN: Eliah Lillis)
His discovery was published in the Medical Journal of Australia, and rewrote the history of AIDS in this country. (ABC RN: Eliah Lillis)
Dr Gerrard did his best to find out more about Harvey, but didn’t have any luck.”We had no record of any relatives … so I don’t know if he had any in Sydney, or what became of them.”It’s unclear if Harvey’s case was an isolated one — whether, because he was old, he got sick and developed symptoms quickly — or if HIV was circulating in Australia earlier than previously thought.HIV/AIDS symptoms can take up to a decade to appear. It’s possible Harvey was just one of several previously unrecognised cases.While his HIV/AIDS diagnosis is the first known case in Australia, Dr Gerrard says he isn’t necessarily our “patient zero”.”We don’t know that he spread the virus to anybody else,” he says.”We’re not even certain how he acquired the virus. We’ll never know.”*Harvey was not the man’s real name.This story comes from Patient Zero, a four-part series on disease outbreaks. Listen for free wherever you get your podcasts.CreditsAuthor: Olivia WillisEditor and digital producer: Rosanna RyanExecutive producer: Joel WernerGraphic design: Ben HayPhotography: Eliah LillasArchival images of RPA Hospital: Mitchell Library, State Library of New South Wales and SEARCH Foundation, CC BY 4.0Archival images of St Vincent’s Hospital and Sydney street: City of Sydney Archives, CC BY 4.0Additional archival images: John Gerrard, Phil Carswell, Australian Lesbian and Gay Archives, Thorne Harbour HealthArchival video: Four Corners