'I live with the scars': Why the fight against HIV is not over

Australia's fight against HIV is not over as new challenges disrupt progress Not long after Stephen Borg was diagnosed with HIV in 2007, he was given a warning that has remained lodged in his heart ever since. "I was told this is a diagnosis that perhaps someone cannot love you for," Mr Borg said. "That really sat quite heavily with me. "If someone was diagnosed with diabetes, you might get flowers or people coming to you with open arms. That's not often the case with an HIV diagnosis." The human immunodeficiency virus, or HIV, affects the immune system and can spread through body fluids. Left untreated, it causes acquired immunodeficiency syndrome (AIDS). As public attention has drifted toward other global health emergencies, those living with HIV, and the battle-hardened community around them, have fought tirelessly to achieve something considered internationally remarkable. Forty-five years since the first globally diagnosed case of HIV/AIDs — and more than 40 million lives lost — Australia stands within reach of virtual elimination of HIV transmission. But the fight is not over and the path toward that goal is not guaranteed. The United Nations last month issued a dire warning that "the world is on course for a resurgence of the epidemic". Experts now fear Australia's enviable position could be at risk. "Australia is on the precipice of achieving something that to the generation before us was incomprehensible," said Dash Heath-Paynter, CEO of Health Equity Matters, the national federation for Australia's leading HIV organisations. "It's almost like you can see the finishing line. But we can't get there with just a business-as-usual approach." 'I live with the scars' There is a moment in the infamous 1987 Grim Reaper advertisement where the nightmarish hooded figure crashes a black bowling ball of death into a mother, sending a baby flying from her arms. The government-funded HIV/AIDs campaign was considered so stigmatising it was later credited with contributing to greater violence against LGBTQIA+ people. David Menadue was one of the first Australians diagnosed with HIV in 1984. He watched on at the television ad with horror. "It scared people into thinking, what am I looking at? Am I looking at a ghost or are these people like this?" Mr Menadue said. "They became scared of people with HIV. It was very stigmatising." Fearful of the fear that surrounded them, and with no treatments available, he and a small community of people living with HIV turned to one-another for support. "We met in each of the group's homes from 1986 to 1993, which was a bad period," he said. "There was very good reassurance [in having] other people you could talk to." Those meetings were essential sources of connection and comfort, but they were also places where information was shared, emerging research discussed and advocacy initiated. The subject of death was nonetheless inescapable. "What we didn't expect was the level of mortality," he said. "Of the 33 people we had in that group from 86 to 93, there's only four people left. "That's a lot of friends to die and to have to attend funerals. Each time you think, am I going to be next? "I live with the scars even today." Amid the tragedy, communities like Mr Menadue's built what would become the foundation of Australia's response to HIV. A new report from Health Equity Matters argues that "from the beginning, the Australian response was strongly community-driven" and the basis on which "a policy architecture [has] been built upon ever since". "Community has been the most fundamental thing in my own survival," Mr Menadue said. Change and challenge While there remains no cure for HIV, the landscape for those with a positive diagnosis, those wanting to take preventative medication or those who simply want to get tested looks very different today. Antiretroviral therapy has seen HIV turn from the death sentence it once was to something that, for many, can be managed as part of a long and healthy life. The most recent data from the Kirby Institute found that of the estimated 30,000 people in Australia living with HIV, 97 per cent were receiving antiretrovirals. Almost all of those recorded a suppressed and undetectable viral load, meaning they are at zero risk of onward transmission. The local roll-out of pre-exposure prophylaxis – known as PrEP – has equally been heralded as a "game-changer". The HIV prevention drug was first added to the Pharmaceutical Benefits Scheme (PBS) in 2018. Sustained community advocacy has seen that access recently expanded to include non-Medicare card holders – an acknowledgement that transmission among non-citizens is just as detrimental to the Australian cause. "It was acknowledged that was a big gap in the response to HIV," said Chad Hughes, CEO of Thorne Harbour Health, an organisation once known as the Victorian Aids Council. "You can't leave anybody behind in that situation." Public health messaging also looks very different. Gone are the ghoulish mass campaigns, replaced by targeted and often in-place messaging. In Perth, the state's HIV advocacy group WAAC has run health promotion campaigns, pop-up testing and PrEP prescription services on-site at a popular male sex-on-premises venue. There are now vending machines in every state and territory that distribute free HIV testing kits. Positioned in discreet yet still easy-enough to find locations in university campuses and outreach settings, the vending machines have been predominantly accessed by people testing for HIV for the first time. In Melbourne, a peer-to-peer sexual health clinic called PRONTO is staffed by people from typically non-medical backgrounds. "What we don't want is someone to come in and behave like a clinician. We don't want [people] feeling like they're being clinically assessed," said Peter Locke, director of services for HIV clinical and community support programs at Thorne Harbour Health. Following three months of training, employees administer free rapid finger-prick and blood tests for HIV and STIs. The clinic's half-hour appointments – as distinct from typically shorter visits to a GP – also open the door to bigger conversations around sexual health. "They may come from a religious background or a cultural background where they can't disclose [their sexual activity] to their family doctor," said Mr Locke. "They may be married, they may be in a heterosexual relationship – they're having sex with men for a number of different reasons and they're just not going to disclose that [to a GP]. "A lot of GPs or nurses out there in the broader medical community aren't comfortable asking somebody. They'll make the assumption, 'oh, you're married, you couldn't possibly have HIV.' So they're not asking, are you having sex with men? Are you having sex with transgender people?" Australia 'not on track' for target Such initiatives have helped make Australia's aim of virtually eliminating HIV transmission a possibility. The current national goal is to reach that milestone by 2030. A look to recent history suggests that may not be straightforward. In 2014, the goal was to reach virtual elimination of transmission by 2020. By 2020, the then Health Minister Greg Hunt updated the target to 2022. It too was missed. In 2023, an HIV taskforce was established with the new goal of a virtual end of transmission by 2030. Despite the best efforts of many, and what those inside the sector call a "rare" level of multi-partisan support, new challenges are emerging that threaten to disrupt the progress. "We're not on track," said Dr Skye McGregor, an epidemiologist at the Kirby Institute. Anonymised data of HIV cases, which states and territories are required to provide to the Kirby Institute, show a consistent pattern. The number of cases among Australian-born men who have sex with other men, sex workers and people who inject drugs is broadly tracking in the right direction. It is in the roughly 30 per cent of cases involving people born overseas where more attention is needed. "We know that the decrease [in cases] has been far higher among Australian-born people reporting male-to-male sexual contact – far closer to where we would want to be at this point," Dr McGregor said. "But there's very different patterns in different populations. "We're fortunate that we're at the point of needing to understand every population because we have done so well." Chad Hughes, who has worked on HIV programs around the world for two decades, said the rise in cases among more recent arrivals to Australia can often be linked to countries with lower sexual health literacy. "A large proportion of newly diagnosed people in Australia with HIV are newly arrived people who are young, whose English is probably a second or third language, who often come as students from Southeast Asia or South America to our universities," he said. "They come from maybe conservative backgrounds where they live with their parents, they arrive in Australia and all of a sudden they are free to go and enjoy life and go to pubs and bars and saunas and have sex and do all the things that young adults want to do without their parents watching them. "But they don't have the knowledge and skills to protect themselves, so they're not using condoms necessarily, they're not on PrEP." There is now a concerted push among HIV advocacy groups to better target health messaging and support services to newly arrived communities. Marc Mendoza came to Australia from the Philippines in 1991 as a seven-year-old and grew up, by his own characterisation, "Aussie, Aussie." He was diagnosed with HIV in 2018. After living through "really dark days," he now volunteers as part of a support group for other people from Asian backgrounds who have tested positive. He said people in that community wrestle with a particular cultural stigma. "If their families already know they're gay, it's like this other dark secret that they've now got to keep,"Mr Mendoza said. Cuts and spikes The challenge becomes far greater beyond Australia's border. Cuts to global public health funding, like the Trump-ordered roll backs of USAID foreign aid programs, have seen access to HIV treatments and prevention rapidly diminish. Late last month in Rio De Janeiro, delegates at the World AIDS Conference were presented with a bleak picture. "Never has donor funding fallen so far, so fast, and those most vulnerable are already paying the price," International Aids Society President Beatriz Grinsztejn told the conference. There were 1.2 million new HIV infections in 2025, according to a UNAIDS report released at the Rio conference, of which 280,000 were recorded in Australia's neighbourhood of Asia and the Pacific. In global terms, Australia is responsible for the merest fraction of new HIV cases – just 757 in the most recent local reporting period of 2024. Those who work in the sector nonetheless believe the country is at a "critical time" and caution against thinking the fight against HIV is "over." "If you get [numbers] very low and then treat it as done, it will come back with a vengeance," Mr Heath Paynter said. "We need to be innovative and we need continued political will and investment." David Menadue remains proud of what the decades of community activism and advocacy have achieved. Now in his seventies, there might be a fragility to his movement, but there's a strength that refuses to leave his body. "I think some people think because I look unwell, I must be. But my actual physical health underneath is all right," he said. "I've got an inner strength, a resilience that all those years with HIV has probably given me. "I'm still here."