World AIDS Day is always a day of mixed feelings.
NOTE: This article was originally published on Jarrod Lomas’ Substack.
Grief and gratitude. Anger and resolve. A sense of how far we have come, and how much work is still in front of us if we are serious about no one left behind.
Australia has one of the most successful HIV responses in the world. That did not happen by accident. It came from community organising, activism, science, and governments that, at key moments, chose to listen to people living with HIV and the organisations that stood with them.
This year, as we mark World AIDS Day and ACON’s 40th year, it is worth taking stock of where we are, how we got here, and what it will take to actually finish the job.
Where we are now
The headline story is that Australia is still moving in the right direction, but progress is uneven.
Across the country, new HIV diagnoses continue to trend downward compared to a decade ago, though the slight increases of the last two years are a reminder that progress is never guaranteed.
The picture in New South Wales broadly follows that story.
New diagnoses remain relatively steady, most transmissions continue to occur among gay and bisexual men, and the vast majority of people living with HIV in NSW are diagnosed, on treatment and undetectable. That in itself is extraordinary progress.
Prevention efforts remain strong. Most gay and bisexual men in NSW report using at least one HIV prevention strategy. PrEP continues to be the most commonly used tool, and treatment-as-prevention remains a pillar of our response.
But the averages hide an uneven story.
Late diagnoses remain too common, especially among heterosexuals. And the decline in diagnoses among Australian-born communities has not been matched among people born overseas. If we are honest, HIV outcomes in Australia still depend on who you are, where you were born and what support you can access.
Forty years of ACON and community leadership
In NSW, you cannot talk about HIV without talking about ACON.
Incorporated in 1985 in the middle of crisis and fear, ACON became a lifeline. It helped reshape what a community-led health response looks like and has driven progress in HIV prevention, testing, treatment and stigma reduction for four decades.
Just as importantly, ACON has evolved – growing into a statewide LGBTQ+ health organisation supporting mental health, domestic and family violence, ageing, trans health, regional communities and more.
Forty years represents volunteers who cared for friends when no treatments existed. Passionate people who forced government action. Peer workers who helped people navigate diagnoses. Staff who fought for better services long before they were mainstream.
On World AIDS Day, saying “thank you ACON” is not enough – we need to back them now and everyday to ensure that they’re here for another 40 years and beyond.
Bobby Goldsmith Foundation: Care when no one else would
Alongside ACON, the Bobby Goldsmith Foundation stands as another pillar of the community response.
Formed in 1984, BGF is Australia’s oldest HIV charity. It began as friends supporting a young man, Bobby Goldsmith, who was dying of an AIDS-related illness. At a time when hospitals, governments and society were paralysed by fear, BGF offered care, dignity and support.
For over forty years, BGF has provided financial counselling, practical assistance, social connection, case management and emotional support for people living with HIV – especially those facing poverty, isolation or stigma.
Together, ACON and BGF show the truth of the Australian HIV response: when systems failed, community stepped up. Much of our progress lies with these organisations.
When governments do the right thing
Community leadership has always been the engine room of Australia’s HIV response. But government decisions still matter.
Some of the most important were made early.
The Hawke Labor Government’s adoption of the “partnership model” – bringing together government, clinicians, researchers, people living with HIV and community organisations a became one of Australia’s most successful public health frameworks.
Successive federal governments ensured new HIV treatments were rapidly listed on the Pharmaceutical Benefits Scheme, turning HIV from a fatal diagnosis into a chronic, manageable condition. Later, national health strategies embedded the science of treatment-as-prevention and undetectable equals untransmissible.
And in 2018, the Turnbull Liberal Government listed PrEP on the PBS, slashing the cost and making prevention widely accessible. It remains one of the most significant policy decisions in the history of Australia’s HIV response.
Bipartisan commitment has also mattered. The goal of virtually eliminating HIV transmission by 2030 has survived changes in government because both major parties have supported it.
At the state level, NSW has often led the country, spanning successive Labor and Liberal governments.
The NSW HIV Strategy set a global benchmark by committing to virtual elimination early. NSW funded rapid HIV testing through community organisations, launched the world’s largest PrEP implementation trial, and was among the first jurisdictions to formally endorse U=U in public messaging.
Across four decades, the pattern is clear:
When governments listen to evidence and follow community leadership, progress accelerates.
When they don’t, people get left behind.
“No one left behind” has to mean something
The Australian theme for World AIDS Day this year is “No one left behind”.
Those four words should unsettle us.
Because right now, we know exactly who is more likely to be left behind:
- People born overseas who face systemic barriers
- People in regional and remote areas
- First Nations communities
- Women, particularly heterosexual women
- People facing stigma or criminalisation, including sex workers and people who inject drugs
If “no one left behind” is going to be more than a slogan, policy and resources have to follow reality.
What more we need to do
A few thoughts.
Invest in community-led services.
ACON, BGF, NAPWHA and peer-led programs are the backbone of the response. Cutting them undermines the very thing that works.
Close the gap in testing and diagnosis.
Self-testing, GP education and culturally safe services must expand.
Make PrEP and treatment truly universal.
PBS listing changed the game, but many still struggle to access PrEP – especially people without Medicare or those facing stigma – plus, there are many communities where PrEP isn’t stocked at the local pharmacy.
Confront stigma.
Stigma drives people away from testing and treatment. It must be dismantled in policy, healthcare and community life.
Support long-term survivors and the people carrying this response.
Forty years of trauma, resilience and care deserve sustained support.
Remember, honour, act
World AIDS Day is about remembering the friends, family and community we have lost. Honouring people living with HIV today. And recommitting to a community-led, evidence-based, properly funded response that finishes what earlier generations started.
Australia has shown that it is possible to drive HIV transmission down. NSW has shown it is possible to exceed global treatment targets. ACON’s forty years show what happens when community, care and courage are taken seriously. BGF’s forty years show what compassion looks like when the world turns away.
The question for all of us, and especially for governments. is whether we are willing to ensure “no one left behind” becomes a lived reality.
On this World AIDS Day, we wear the red ribbon, we remember, and then we get back to work.
Learn more & resources –
World AIDS Day
ACON
Ending HIV (ACON)
Bobby Goldsmith Foundation
Positive Life NSW
National Association of People with HIV Australia (NAPWHA)
NOTE: This article was originally published on Jarrod Lomas’ Substack.
