Revealed: The new front in Sydney’s 40-year HIV battle (2024)

The nondescript Parramatta offices housing the new western Sydney outpost of Australia’s oldest gay community-founded HIV charity is only a short drive from Cumberland City Council chambers, the scene of impassioned protests this week over a children’s book depicting same-sex parents.

While the activities going on behind the facades of the Bobby Goldsmith Foundation and Cumberland City Council appear worlds apart, they are now the unlikely fronts in a widening cultural divide between the inner city and the greater west in Sydney’s four-decade-long battle against HIV, hom*ophobia and discrimination.

“Strangely, I think a lot of the issues – the stigma, discrimination and isolation – which our generation faced, are now confronting people with HIV in those diverse communities in the west that have probably never been to Oxford Street,” foundation co-founder and Bobby Goldsmith’s former partner Ken Bryan told the Herald at the charity’s 40th anniversary on Thursday night.

Goldsmith’s niece Jen Hanco*ck recalled how her family, who “loved Uncle Robert unconditionally”, had to keep his HIV diagnosis a secret because of the discrimination and shame that followed the virus at the time.

“He was such a wonderful, fabulous man; it was a really awful situation for all of us,” she said.

While there is still no cure for HIV, with modern drug therapies it is no longer a death sentence and transmission is on the brink of eradication within Sydney’s established gay communities.

However, in the cultural, religious and ethnic diaspora of Greater Western Sydney, the statistics tell another story.

An estimated 28,870 people were living with HIV in Australia at the end of 2022, according to data from the Kirby Institute. About 10,755 were estimated to be in NSW.

Last July research from the Kirby Institute showed new HIV infections in Sydney postcodes with the highest proportion of gay men had dropped 88 per cent since 2010, but alarmingly, there was a much smaller decline of 31 per cent in Sydney’s outer suburbs.

“You walk outside Darlinghurst and much of the understanding of HIV is still stuck in 1984. The fear and stigma is at that same level and that means the level of disadvantage is enormous,” said Barbara Luisi, manager of the Multicultural HIV & Hepatitis Service, which is focused on shifting the HIV conversation among migrant communities to being a “health issue that affects us all”.

“There are already fundamental barriers like language, trying to understand our complex health system … and then to have stigma, shame and embarrassment, that just creates a perfect storm,” Luisi said.

“Geopolitics means migration is dynamic and ever-changing. We see people turning up to clinics with AIDS defining illnesses – that should not be happening in Australia in 2024, so it’s great [that] organisations like BGF are mucking in.

“You see things like the book ban, but rather than a knee-jerk reaction, I also see an opportunity for diverse communities to work together, to create a deeper understanding of each other, just as we did in 1984 when the gay community became our greatest ally in the battle against HIV.”

Public servant Bobby Goldsmith, one of the first victims of the virus at just 38, was a local hero within Sydney’s tightly knit gay scene. A keen recreational swimmer, he won 17 of Australia’s 21 medals at the inaugural Gay Games in San Francisco in 1982.

“I had been reading about his success, and then I met him at Club 80 one night,” Bryan said. “He really was the love of my life. He taught me so much about compassion during his final weeks; he taught me about confronting death with grace and good humour.

“Towards the end, we wanted to do something for him and that’s how the fundraiser started, to raise enough to buy a TV and VCR. Hundreds of people turned up, it was overwhelming. We ended up raising $6000, which was a lot more than we needed, so we started BGF. The community was responding to a crisis when the world felt like it was turning away from us.”

Over the years, using its annual “Bake Off” cake competition and celebrity fundraisers, BGF has drawn everyone from Jeannie Little and Bernard King to Malcolm and Lucy Turnbull into its orbit. It helps provide support for people facing an HIV diagnosis.

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Today the charity has an annual budget of more than $5 million and, just as HIV’s impact is shifting, so too is BGF’s focus, with a raft of programs, ranging from financial support to social connection, across a wider range of communities than ever before.

“There is going to be another generation or two of HIV impacting on people’s lives. Our primary role is providing support with compassion, solidarity and inclusivity,” BGF chief executive Nick Lawson said.

“We’re also trying as best we can to change the perception and concept of HIV in Australia. A lot of people ask if it is ‘still a thing’ and for a lot of people – 29,000 across Australia – it still is. The old days of the grim reaper have never been well rebutted, but it would be great to finally break down all that stigma and discrimination for good.”

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