In the 1980s, ACON was an organisation that was desperately wanting to not exist, Australian Federation of AIDS Organisations executive director Don Baxter recalled this week.

Speaking at an event on Tuesday celebrating ACON’s 21st anniversary, Baxter reflected on the early days of the HIV epidemic in Australia.

As death rates among gay men soared, community health activists like Baxter hoped for an early cure that would make organisations like ACON superfluous.

Two decades on, AIDS groups are discussing the epidemic’s first 25 years and its next 25, as ACON chief executive Stevie Clayton told the crowd on Tuesday night.

There’s no end in sight, she said.

Advancing treatments have transformed HIV in Australia since ACON was formed after the so-called Fighting For Our Lives meeting in February 1985. ACON has in turn broadened its focus beyond HIV.

As the organisation looks to the future, the challenge is continuing to educate the community about an epidemic it hoped to farewell years ago, just as improved treatments make HIV much less apparent.

In some ways the task was much easier then than it is now, Baxter, a former ACON president, told Sydney Star Observer this week.

Then it was very obvious what was happening to people who were becoming infected. And now that’s not the case.

We actually seriously thought all the gay businesses -“ which were very recent in those days -“ and the gay media would disappear because the people who were producing them would die.

That was a very powerful call among gay men in those days. That’s not the situation confronting ACON or anyone now.

Stevie Clayton agrees, saying Australia’s impressive HIV response has paradoxically made fighting the epidemic tougher.

Whilst it gets worse and worse in the rest of the world, the response in Australia in containing the epidemic has been so successful that it’s probably its own worst enemy, Clayton said.

Most people in Australia outside of people who are infected think that it’s not an issue here. Trying to maintain some focus on it is a real challenge.

The arrival of combination HIV therapies in the mid-1990s, and other treatment advances, have also exposed ACON to other challenges.

As HIV-positive people live longer and healthier lives, ACON has had to begin addressing new health issues.

In 2000 the organisation changed its named from the AIDS Council of NSW to ACON, reflecting the changing epidemic and wider health demands.

The move drew some criticism, but the organisation believes its decision to widen its scope was the right one.

Continuing on that path is ACON’s 2006-2009 strategic plan, officially launched at the 21st anniversary event on Tuesday. Its priorities include mental health, and alcohol and drug use, alongside HIV/AIDS.

Dr Robert Finlayson, director of Taylor Square Private Clinic and an HIV doctor for 25 years, says the changing epidemic will continue to pose new challenges for ACON.

One example is the ageing HIV-positive community.

As well as coping with newly infected people, both young and old, [they’re] going to have to look at ageing and all its problems, plus HIV on top of that, Finlayson said,

We haven’t got that much firm knowledge about how that is going to progress.

The need for more funding also looms, as ACON’s work touches on new areas. ACON plans to seek more money from the federal government -“ and from the community itself.

We do get government funding for some services, but there are other really important services that aren’t funded, Stevie Clayton says.

And they’re not going to happen unless people are willing to donate and help us to build those programs.

One option is a user-pays system for some services, where clients pay what they can afford. A similar model for ACON counselling services for non-HIV-positive people has already shown success.

ACON also needs to do more to engage people who are not connected with the community, according to another speaker at the 21st anniversary event.

High Court judge Michael Kirby told the event ACON had to do things differently to reach out to new audiences.

ACON in the decade ahead has to find a way to reach out to them.

ACON has also been accused of not responding quickly enough to some other health issues, an assessment Stevie Clayton says is accurate.

We’re quite good at looking at research and listening to the community and working out there’s a need to do something, she said.

But then between that and getting out a campaign or a resource, there can be quite substantial delays, and we want to fix that.

I think it’s really clear that we haven’t responded as fast with a comprehensive program around crystal meth, and we should have.

We’ve done what we could have within our available resources and knowledge and skills, but we clearly should have found a way to do more, bigger, better, and faster.

Despite the regular criticism of the community’s peak health organisation, Don Baxter believes history will judge ACON favourably.

He says its ability to build partnerships with government, other community groups and the health sector have played a crucial role in NSW’s HIV response from the outset.

You can actually see some of the benefits of that in Sydney being one of the very few major Western or developing world cities that appears to have stabilised HIV infections among gay men.

I think that close working partnership is a really big achievement.

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