From the crisis era of the 1980s to today being Australia’s leading LGBTQ+ health organisation, ACON is marking 40 years of advocacy and community care.

By John Burfitt

Few of the courageous people who in 1985 founded ACON – then known as the AIDS Council of NSW – in a time of crisis and an environment of fear could have envisioned the all-encompassing health organisation it is today marking its 40th anniversary.

As the outbreak of HIV spread throughout the early 1980s, claiming lives and devastating LGBTQ+ communities across Australia, ACON quickly took on the role of offering leadership, guidance and support to the NSW community desperately attempting to navigate the uncertain landscape the virus had forced upon it.

Four decades later, ACON is marking its ruby anniversary milestone with a community engagement program.

ACON President Justin Koonin says this is a time to remember the people who came together to create an organisation that changed lives since the day it opened.

“This is a story of celebration of how much can be achieved when a community works together against what would have seemed almost insurmountable odds throughout the 1980s and ‘90s,” he says.

“All ACON achieved throughout that time, and how it has evolved since, is worth celebrating. One side of turning 40 is looking back to pay respect to all that went before, but the other is to look ahead to see what the organisation can be into the future.”

The community rallies and ACON is born

When the AIDS crisis swept the world in the 1980s, it was a time of loss and grief. With life-saving treatments well over a decade away, it was also a time that for many posed little hope.

“There were the first reports coming out of the United States of this mysterious illness that gay men were contracting,” Robert French, Vice President of ACON from 1986 to 1987, says. “It then became more prescient in Australia, so we knew there was something out there, but we weren’t quite sure what it was.”

Various community groups rallied to provide care and support for people living with HIV, to educate on safer-sex practises and lobby governments for funding. It was the Hawke Government’s Federal Health Minister Neal Blewett who announced resources would be available, but the government would only deal with one organisation.

It was at a community meeting in February 1985 at the NSW Teachers Federation that the various organisations agreed to form the AIDS Council of NSW, under a banner bearing the motto ‘Fighting For Our Lives’. French recalls it was a difficult period due to the “turf wars” between the groups.

“It was once said that dealing with NSW was like trying to herd feral cats!” he says. “But when all the deals were done, and we had the AIDS Council of NSW, it was a pivotal moment. I recall making the comment, ‘I wish you would now all get on with it’.”

Many of those leading the fight had previously been involved in the Gay Liberation movement in the 1970s, French adds. “That was an important factor behind the commitment of the people involved in ACON. There was a job to be done. We weren’t thinking we were brave or gutsy. This was our crisis, and we had to deal with it.”

As the crisis expands, ACON makes its mark

In 1987, ACON opened its first official office in Surry Hills in Sydney, and in the following years, opened regional offices in the Hunter, Northern Rivers, and Illawarra.

Founding member Don Baxter was elected president in 1987 and was Chief Executive from 1990 to 1996, which marked some of the most devastating years of the pandemic. In a previous interview, Baxter said ACON’s services in this era saved “countless lives.”

“When ACON was formed, it was during a period of hysteria, fear, grief, sadness and trauma – many people, mostly healthy young men, were getting sick and dying. Emotions ran high but we rallied together.”

As the pandemic spread, so did ACON’s programs and advocacy like the ‘Make AZT Available’ rally, and contributing to Australia’s first National AIDS Strategy. ACON also launched an extensive range of sexual health campaigns, fundraising and awareness initiatives like the Red Ribbon Appeal and youth-support programs like Fun & Esteem. In 1990, ACON began to actively include women in its campaigns to reflect the diversity of people affected by the pandemic.

Robert French recalls ACON’s early sexual health education campaigns were so confronting that they attracted widespread attention across the community.

“The condom campaigns really got the message through and were vitally important in stopping the progress of the virus,” he says. “ACON was leading all that and it was one of the great early successes.”

The tide turns with new chapters for the community and ACON

A turning point arrived in the mid-1990s when ACON played a significant role in early trials of Anti-Retroviral Therapy (ART) medications, which offered life-saving treatments to combat HIV. 

“That was such a tumultuous time because as we had more people living longer with HIV, ACON’s client base was getting bigger, and responding to the pandemic became much more complex,” Stevie Clayton, ACON’s President from 2000 to 2012, says.

“This created the right environment for ACON to start broadening LGBTQ+ programs to address a wider range of issues and get more people engaging with the organisation.”

Such issues included women’s health, domestic and family violence, drugs and alcohol, mental health and Aboriginal & Torres Strait Islander health. To reflect this expansion, in 2007 the name changed from the AIDS Council of NSW to simply ACON. 

“Once we made that decision to become that broader organisation, we looked at what all the research was telling us, and found a huge amount of unmet needs,” Clayton says. “The first step was deciding what kind of resources we could deliver and how to build a wide range of specific programs.”

In doing so, ACON strengthened its position as Australia’s preeminent LGBTQ+ health and wellbeing organisation, which not only catered to community needs but also became a powerful advocacy force dealing with state and federal governments.

Julie Mooney-Somers, an ACON board member for over a decade from 2012 to 2023, recalls the changing nature of ACON during this era as “dynamic.”

“It didn’t feel like anything I had seen before from a health organisation,” she says. “ACON had grown into this place with great confidence about connection to its community. Seeing how it did that, particularly with a strong lesbian health strategy, was really powerful.”

In 2013, ACON launched one of its boldest ever initiatives – the Ending HIV campaign, with a focus on eliminating HIV transmission in NSW, and transmission rates have been on a downward trend since. The following year, ACON moved to its current Elizabeth Street premises.

Current ACON CEO Michael Woodhouse states ending HIV is something he once would never have imagined. 

“It is possible,” he says. “We will, of course, continue to provide excellent services and support for people who are living with HIV, but it’s possible to get there.”

Modern-day ACON: an inclusive organisation making an impact

In more recent times, ACON launched social inclusion initiatives like Pride in Diversity and Pride in Sport, and played a key role in the promotion and implementation of pre-exposure prophylaxis (PrEP), rapid HIV testing, community-based testing, early HIV treatment and Undetectable equal Untransmissible (U=U) as part of the ongoing campaign to end HIV transmission.

ACON also launched TransHub, a platform for trans and gender diverse people, their loved ones, allies and health providers.

“Gender affirming care is one of the most important issues facing our community, and we know it saves lives,” Woodhouse says. “Trans people need to have their healthcare needs met, and a way to move through the world in a positive and happy way.”

This year, ACON opened the Kaleido Health Centre, which made history as Australia’s first integrated primary health care service for NSW’s LGBTQ+ communities.

Justin Koonin says the 40 year anniversary celebrations are an important time for reflection but adds the organisation can not afford to become complacent.

“You can never take your foot off the accelerator as we need to make progress for everyone,” he says. “I’d like to ask the community how we can take all we’ve learned and now be part of a much broader equity for all Australians. That’s where I hope ACON is heading.”