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A Legacy to Remember 2021 International AIDS Candlelight Memorial

As part of Melbourne's International AIDS Candlelight Memorial (IACM), streaming online on Sunday 16 May 2021, we invited our Keynote Speakers, Professor Suzanne Crowe AM, one of Australia’s leading HIV clinician and researcher, and Judith Gorst, a long-time HIV Nurse, Counsellor and Family Therapist, who’ve worked together during the genesis of Australia’s HIV/AIDS epidemic to reflect on their time working at Fairfield Hospital’s Ward 4.

Fairfield Hospital’s Ward 4 was also known as the AIDS ward from the 1980s to the mid-90s. Housing and caring for countless men, women, families and communities affected by the grips of a deathly virus. Since the first media report of an unknown virus in Sydney Star in July 1981, our Australian community has lost a total of 6,845 people to AIDS. In this article, we capture some of the fears and lessons both women shared, at a time when the HIV virus was crippling our families and communities.

We caught up with Suzanne and Judith on a cold Thursday in early Autumn to remember the people we've lost in the past 40 years of HIV/AIDS epidemic.

Sitting across from one another and wrapped in warm clothes, Suzanne starts the conversation:

“Do you remember Ward 4, Judith?”

“Oh, yes,” said Judith, sitting still in her chair, “I have so many intense and powerful memories of those times. I’m thinking back about how desperately unwell the patients were at that time and how the virus affected them.”

“The way they lost their ability to walk, lost their ability to see, lost their ability to hold their bodily functions…I could also remember the scores of these beautiful, often, young gay men and seeing the suffering they’ve experienced…and to think about death at such a young age.”

“We went to so many funerals at that time,” said Suzanne.

“I know,” echoed Judith, her voice wrapped in grief.

Fairfield Hospital in the 1980s. Photo from Vice.

Reflecting on the swift and sudden shift of her career brought by HIV/AIDS, Judith then says, “In the early days, when I was in Fairfield Hospital, Ward 4 used to be for people who were staying for a very short time: people who had glandular fever, whooping cough, and these diseases that were relatively easy to treat, and all of the sudden, it was all filled with young men who were dying.”

Judith then adds, “It was a very tough time. I think often about the dignity and trying to help people how to tell their families and discuss their diagnosis with their partners when an HIV diagnosis equated with a death sentence. These are young people having to face things that are outside the normal course of someone’s life”

“That’s right,” said Suzanne, “but there was a culture of care in Fairfield. There was no discrimination among the staff or in any of the people who worked in the wards. I remember thinking how so much of that fear was underpinned by the lack of knowledge about HIV.”

“Part of that culture of care was breaking down the traditional hierarchy between doctors, nurses, and patients. We were all learning together. We were all working together. There’s a legacy thanks to the very well educated and informed patients who were not only asking questions but telling us how they want to be supported. That was an important lesson in the medical sector.”

Judith agrees and adds, “and it was such a steep learning curve in terms of the point of view on how to manage the infection, or even the lack of knowledge that I had at that time supporting people from the LGBTIQ+ community, people who injected drugs…marginalised and stigmatised groups of people.”

Both stressed that collaboration and consultation were paramount to a period when no biomedical intervention was in sight. Drug trials were common at that time; however, most made people sick or worse.

Ian Gust and Suzanne Crowe at Fairfield Hospital in 1989. Image from Vice.

“We did so many trials back then,” said Suzanne who worked very closely in research, “but there was so little we could offer and there was still no treatment that was safe for the virus, so we were basically left with trying to provide support, friendship, compassion, kindness, respect, treating people with dignity and helping them deal with family issues right until the end.”

Thinking of another marginalised group, Suzanne remembers the several women living with HIV who were diagnosed at a time when HIV was mostly associated with gay men: “it was a tough time for women living with HIV. We couldn’t enrol them in clinical trials for any treatment because they were mostly, if not all designed for men, and they were treated as if they were gay men. But it was so different in so many ways. They probably had questions around pregnancy, but we didn’t know the risk at that stage.”

Out of curiosity, Judith then asked, “what were some of the things personally and professionally that you took at that time?”

“Personally,” Suzanne pauses for a brief second, “those days were really tough emotionally. I think I gave up trying not to cry. I learnt that you can still be professional and provide care and support through a few tears. I think they understood that as well.”

Suzanne adds, “For me, I feel like I have been living and breathing HIV since the days we started the HIV Clinic. I feel honoured to be a part of it, right from the beginning, back in the days when there was a lot of fear and then excitement when AZT came in, and the disappointment when people became resistant to some of these treatments. Then it was 1996 when we had the breakthrough on effective treatments and we now have PrEP, and most people living with HIV can now live normal lives.”

Judith smiles back at her then adds, “We were doing something that mattered and so important at that time. When so little was known, and there was so much stigma and so little can be done that it was so important to try and make things a little bit better. Experiencing it and seeing the level of HIV stigma really made me think about my own beliefs and values differently. How we as individuals and as a society can form opinions, and how these opinions can be unhelpful on the broader perspective on other human beings.”

“There’s so much legacy from the HIV epidemic,” said Suzzane.

There’s so much legacy.

On Sunday 16 May, from 5 - 6PM, join us as we join organisations worldwide to raise HIV awareness and remember the friends and family we have lost to AIDS. Spend the evening with the warmth of your community and commemorate four decades of love, loss and resilience.

Cover Photo: A block from the AIDS quilt, Photography by Powerhouse Museum ©