A giant quilt of names and faces fills two walls of the gallery. It’s the opening night of The Huxleys’ Wrap Your Troubles in Dreams exhibition at the Fremantle Arts Centre in November 2024.
A meandering crowd of socialites and arty types work their way through the different rooms of the gallery where photographs, videos and installations created by Will and Garrett Huxley hang. Later in the evening the duo will take to the stage in their elaborate costumes to perform a slow version of Sylvester’s disco hit You Make Me Feel (Mighty Real).
The names and faces on the giant hanging quilt include Larry Levan, Herb Ritts, Kenny Everett, Sharon Redd, Timothy Conigrave, Willi Ninja, Patrick Cowley and Leigh Bowery.
“What connects all these people together?” a woman standing nearby loudly asks her friend. “I can’t figure out the link.”
An acquaintance is nearby; he rolls his eyes.
I don’t know every name on the quilt, I promise myself I’ll learn more about the life of Cookie Meuller, Peter Tully, Brad Davis, Antonio Lopez and David Wojnarowicz – just some of the names and faces that are unfamiliar.
But there’s more than enough names to quickly realise they’re all people lost to AIDS. Among them many personal heroes, Derek Jarman, Alvin Ailey, Fela Kuti, Ofra Haza, and that disco legend – Sylvester.
This memorial highlighted fabulous famous people died after contracting HIV, most at a time before treatments and medications improved. But the virus has taken many more. Each year at the AIDS Candlelight Memorial we remember all of those who are lost.
As you walk through the WA AIDS Memorial in Robertson Park it’s the names of the equally fabulous, but maybe not as famous that are remembered, Dale, Peter, John, Neville, Chad, Ray, Terrilee, Andy, Scott and Graham are among the names engraved.
Knowing where you’ve been is essential to understand where you are going
Recently in our LGBTIQA+ communities we’ve had some opportunities to look back on the journey we’ve been on for more than forty years. Some of us were here when the journey began. For others we’ve always been on this journey. Thankfully, for many, the darkest part of the journey is something that is in the past, before they were even born.
This year marks the 40th anniversary of WAAC, formerly the WA AIDS Council. It’s provided a timely pause to recall the journey so far, celebrate achievements, and take stock of the work that lies ahead.
During the recent Boorloo Heritage Festival a timeline of the organisation’s history was created by young archivists working with the WestPride Archives.
As the archivists in their twenties were searching through WAAC’s decades of posters and flyers for different promotional campaigns, they were discovering much of the material was from the 1980s and 1990s – most of them were born after this millennium.
Their exhibition laid out the many steps we’ve trodden as a community, the roadblocks, the wrong paths, the detours and distractions. The achievements have been many.
Another event at the festival saw now retired Dr Martyn French recall the scientific steps and medical responses to tackling HIV, with the Royal Perth Hospital taking on a world-leading role.
Dr French talked about how the creation of multi-disciplinary teams had been a key factor in developing an effective response for those who found they were HIV positive at a time when medications had lots of side effects and could only delay a patient’s death for a matter of months or years.
Heartbreakingly, Dr French shared a story of a patient whose death came maybe not from the virus, but the stigma that surrounds it. So afraid was she of people finding out she was living with HIV, she refused to take any medication out of fear it would lead to a discovery of her status. She died, but Dr French notes that her story allowed medical professionals to understand just how powerful the stigma around the disease could be.
Virtual elimination of HIV in Australia is in sight
In 2024 the Australian government launched the Ninth National HIV Strategy with Health Minister Mark Butler restating Australia’s commitment to eliminate blood borne viruses and sexually transmitted infections by 2030.
Under the previous strategy the rates of HIV transmission in Australia had dropped significantly. The introduction of better medications and treatment regimens means people living with HIV now face a chronic, but manageable, disease.
More importantly, the introduction of PrEP treatment, the process of taking a daily pill that stops those at risk from contracting the virus has had a huge impact on cases in Australia.
Butler and the government’s HIV Taskforce set the 2030 target that the Minister described as “ambitious but achievable”.
“Our goal is virtual elimination of HIV transmission in Australia.” he declared.
A three-pronged vision was laid out. HIV transmission is virtually eliminated in Australia. Everyone has access to safe, affordable and effective HIV prevention, treatment and care, and all people living with HIV live well, free from stigma and discrimination.
If virtual elimination is achieved, it will mean that for the first time in over four decades HIV will no longer be considered a public health challenge. It will require that there are 90% fewer diagnoses of HIV than 2010.
Australia is well on the way to reaching the goal. Between 2014 and 2023 Australia nearly halved the number of new cases. In 2023 there 722 notifications of HIV, with cases among gay, bisexual and other men who have sex with men still making up a significant part of the population.
While treatments have improved, there is no cure for HIV. Scientists around the world continue to strive for that elusive goal. There will always be some new cases of HIV, but virtual elimination means no more that 90 cases per year.
Who do we need to reach, and who must we not forget?
When Western Australia marked World AIDS Day last year, Dr Daniel Vujcich from WAAC spoke about the goal of virtual elimination, and asked people to think about the 90 people in 2030 who still might be receiving a positive diagnosis.
“They will not be statistics. They will be people.” he said.
He identified six groups of people who are likely to be within that cohort of 90. Those which may be hardest to reach and support in the push to achieve the 2030 goals.
People born overseas, unfamiliar with the health system, who may encounter a health system that does not speak to their fears or meet their needs was one group. Men who have sex with men, but do not identify as being gay or bisexual were also on the list.
Women would still be getting HIV, because the rollout of PrEP treatment has been focused on those most at risk, gay and bisexual men, and the other men who have sex with men.
First Nations people, and those experiencing homelessness and poverty would still be overly represented, and most alarmingly – people who’ve just never gone and got themselves tested. For those people they are potentially losing the opportunity to take advantage of the life-saving treatments, late diagnosis means people are more likely to have advanced complications that are much harder to treat.
The Last Mile
Running a marathon, connecting phone cables, or online shopping, all face the same challenge. In supply chain management it’s recognised that the last part is the hardest.
To finish a marathon, you need to run all 26.2 miles, and afterwards you’ll still need to walk home.
Online suppliers know that even if they can get your attention, persuade you to select some goods, guide you through the checkout process, and have the good in stock in a warehouse, they still have to get it delivered to you – and that last bit is the hardest part of the process.
The phrase ‘The Last Mile’ grew out of the telecommunications industry where they discovered connecting individual properties to networks was the most challenging task.
In the journey of HIV, Australia is looking down The Last Mile. Which why we adopted the phrase for this new series of reports that will explore how the goals of 2030 can be achieved.
This will be a Solutions Based Journalism project. The goal is to interrogate the challenge, explore the data, hear the stories and experiences and present the ideas and practices that will hopefully lead us to all achieving the 2030 goals.
Contact
Graeme Watson
Co-editor
graeme@outinperth.com
