The compassion and love of Sydney’s local heroes and the evolution of their 40 year fight against HIV
Sydney’s eastern suburbs were hit hard by the AIDS crisis but also led the fight against the disease and the associated stigma. Campaigner David Polson looks back on the dark days.
Wentworth Courier
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The history of HIV in Sydney’s east is full of extreme heartbreak but also extraordinary triumph.
This remarkable part of Sydney was at the forefront globally in creating an affirmed gay culture, and leading the way internationally in HIV prevention and the distribution of affordable drugs to control it.
As a young medical reporter on a Sydney newspaper, I documented this history as it unfolded.
Recently I met up with David Polson of Potts Point to remember. A fun-loving man in his 60s, wearing cool pink glasses – a nod to his mum Norma – he was diagnosed HIV+ as a young man in 1984.
He still recalls vividly the sensation of falling down into a big, black bottomless pit: “It was a death sentence. There is no other way of describing it. You were being told you were going to die.”
And indeed, many did. By 1985, 4500 young NSW gay men, mostly from East Sydney, were infected. Death stalked them. From 1983 to 2005, 3060 died of HIV/AIDS.
Of course, Polson didn’t die: “But my diagnosing doctor said: ‘You must only tell one or two really trusted friends.’ That was to protect me.”
Such was the fear and loathing of HIV/AIDS, the stigma associated with itwas a bigger risk to Polson’s life than the disease itself.
Gay men lost their jobs, were kicked out of housing and shunned by their families.
Gay bashings and murders, which police turned a blind eye to, were common. (A new NSW commission is now investigating the unsolved murders of 88 gay men between 1970 and 2010.)
That attitude has changed. We celebrate gay marriage. Our biggest party, the Sydney Gay and Lesbian Mardi Gras, contributes an estimated $40m to the NSW economy annually.
But the first march, in 1978, was for human rights – including the right to have male gay sex, which wasn’t decriminalised until 1984, without going to jail for it. It started as a celebration but quickly turned to horror as police detained and bashed with impunity.
Then in 1981 the rumour of a disease killing gays began, turning into reality for St Vincent’s, Darlinghurst, in 1983 when it admitted its first HIV/AIDS patient.
Polson says he owes his life to the late UNSW Scientia Professor David Cooper, then a young St Vincent’s immunologist.
Sadly, Cooper died in 2018. But he left behind an astounding legacy of internationally significant HIV studies and founded the National Centre in HIV Epidemiology and Clinical Research in 1986, renamed the Kirby Institute in 2011.
It continues its tradition of global firsts today, for example reporting in 2018 evidence the use of preventive medication PrEP caused a one-third decline in new HIV infections.
St Vincent’s responded quickly to the medical needs of its “gaybourhood”. The Sisters of Charity who ran it were fiercely loyal to their marginalised communities, even though their Catholic Church condemned homosexuality.
“They were breathtaking these women. They stood up against discrimination and really enacted their faith,” says Stephen Oldham, Australia’s fist clinical nurse consultant in HIV palliative care.
The fact that St Vincent’s created the position shows the commitment it was making. Oldham, now living in northern Queensland, trained at pioneering London HIV/AIDS hospitals during the 1980s before joining St Vincent’s.
“When I came out to my parents they showed nothing but love, a vast contrast to the experience of many gay young men I nursed, who couldn’t tell their parents and died alone.
Back in 1983, with great foresight – and the trust of the gay community – Cooper invited gay men to join the Sydney AIDS Prospective Study. Soon 1000 men enrolled.
“I didn’t have nursing skills and I wasn’t a doctor. But I knew taking part in David’s research was a way of making a contribution,” says Polson. “Of those 1000, 386 of us ended up testing HIV+ and only 28 of us survive today.”
Polson went on to participate in 28 clinical trials with Cooper: “It’s something I credit with saving my life.”
Listening to us at the next coffee table, Annie, a nurse, turns with tears in her eyes: “Thank you for being involved in those studies. They saved so many lives. My brother Anthony died within three months of contracting HIV, in 1989, from pneumocystis pneumonia.”
Pneumocystis pneumonia was often the main killer, allowed in by the compromised immune system. Anthony’s three months from diagnosis to death was typical. Like the experience of another young man with pneumocystis who let me meet him as he lay dying in St Vincent’s. He wanted to share his story to show his humanity.
As I donned protective clothing, the nurse attending said sternly: “You’re not wearing this to protect you from him. You’re wearing it to protect him from you because he has no immunity.” A reverse of the use of Covid-19 PPE today.
By 1987 in NSW it was clear HIV/AIDS was not just a disease of gay men: 252 people in the wider community had it.
So the National Advisory Committee for AIDS produced the Grim Reaper ads, created by Siimon Reynolds. These only ran for six weeks but are still vividly remembered 35 years later. The campaign was designed to shock Australians into awareness of the need for safe sex.
It was supported with a massive information campaign and swung the Australian community behind eradicating AIDS. We became one of the most successful countries in the world at containing the spread.
“Australia built its response to HIV/AIDS from the grassroots up, not from the top down,” Bill Bowtell, a key adviser on HIV/AIDS to the Australian government explained in a recent paper.
This included safe sex campaigns, needle exchanges, financially subsidised antiretroviral medications, anonymous HIV testing and the involvement of affected communities in planning – now internationally recognised as ‘The Australian model’.
The AIDS Council of NSW (ACON), established in 1985, took a big role in shaping this model. Today, it’s still a global leader in community health, inclusion and HIV responses.
When Bobby Goldsmith of Surry Hills was dying of HIV/AIDS, his friends organised a roster of carers, so he could live – then die – at home, in 1984. From this grew the Bobby Goldsmith Foundation, Australia’s longest-running HIV charity. A similar program is the Albion Centre’s Ankali Project, and there were others.
Most of the people Oldham was discharging at that time were going home to die but hospitals won’t discharge a person to die in isolation at home.
“I could ring them and say: ‘We’re discharging someone home tomorrow and he’s got no one, nothing.’ And they’d be on to it straight away.”
They provided food, clothing, cleaning and companionship.
By 1994 antiretroviral treatments had reduced deaths from HIV/AIDS by 38 per cent.
Anna Thornton, today director of nursing of St Vincent’s Health Network, was involved in the hospital’s nursing programs from the 1980s and watched as needs changed.
“By 1996, 1997, we had a very large cohort of young men in hospital who had HIV dementia. They were often so young – 25, 35, 45 – but needed care and looking after.”
Loss of memory, difficulty thinking and loss of motor skills were typical of their symptoms, she explains.
As lifespans increased, long-term palliative care offered at St Vincent’s Sacred Heart hospice played a vital role for dying HIV/AIDS patients. This helped develop new palliative care practices.
And then HIV/AIDS care evolved again, from supporting people dying to supporting people with a chronic illness.
To this day there is a strong Pride identity within St Vincent’s.
The Bobby Goldsmith Foundation points out that today more than 70 per cent of its HIV+ clients are over 50. Some suffer premature ageing, and higher rates of rare diseases, such as clonal haematopoiesis. The unique dementia associated with HIV also has its own burdens, so research, treatment and management must continue.
“The love that dare not speak its name” now shouts proudly. But compassionate love, ‘caritas’, also has a powerful place in this story – although that may be just semantics. After all, love is love, and that is all that matters.
HIV Testing Week, held in the first week of June, aims to increase the uptake of regular HIV testing. More information is available at seslhd.health.nsw.gov.au. Details on local HIV testing sites are available at endinghiv.org.au
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