\u201cThat\u2019s my memory of the time \u2013 that even though this horrific thing was happening, I met some of the funniest people I\u2019ve ever met in my life who were comedic geniuses,\u201d Johnston says.<\/p>\n
\u201cI realised well before I\u2019d started writing that if I didn\u2019t have humour and joy, it was just going to be too turgid and just really unreadable and uninviting.\u201d<\/p>\n
Johnston was transported back to this era during the pandemic, prompting him to start thinking about writing of those lost in the crisis.<\/p>\n
\u201cWhen COVID happened, and we started hearing all this language again of people testing positive, seroconversion, viral loads, splashed on the television and across newspapers again, it made me really recoil,\u201d he says.<\/p>\n
Of course, despite the happy memories \u2013 Johnston recalls the \u201cincredible village atmosphere\u201d and freedom that came from working in a predominantly gay and lesbian populated-suburb (the \u201cgay ghetto\u201d as many referred to it) \u2013 his job put him on the front line of the crisis.<\/p>\n
Related Article \u201cWhen I started doing research and went through the gay papers, the pages of obituaries every fortnight was startling. I\u2019d forgotten how many there were and how many of them were people who came to the pharmacy,\u201d he says.<\/p>\n This year marks the 30th anniversary of the introduction of highly active retroviral therapy (HAART), a potent combination of drugs that became the new standard of care for the treatment of HIV.<\/p>\n Unlike previous antiretroviral drugs \u2013 to which the virus became resistant, and which often came with crippling side effects \u2013 combination therapy proved highly effective, transforming HIV from a death sentence into a manageable, chronic condition.<\/p>\n \u201cJust seeing people getting better was incredibly rewarding,\u201d says Johnston, who worked in the pharmacy for more than a decade.<\/p>\n \u201cHIV wasn\u2019t cured, but it\u2019s not often you see in a pharmacy that kind of blooming again of people going from literal skeletons to quite chubby young men. That was a privilege to see.\u201d<\/p>\n Since the start of the epidemic<\/a> in 1981, there have been an estimated 84.2 million HIV diagnoses<\/a> around the globe, and about 40.1 million deaths due to AIDS-related illnesses.<\/p>\n Associate professor Bridget Haire, from the University of New South Wales\u2019 School of Population Health, has worked in HIV and sexual and reproductive health for decades. She describes the shift as \u201cbreathtaking\u201d for the lives it saved.<\/p>\n According to the Kirby Institute, AIDS-related deaths in Australia peaked between 1994<\/a> and 1995<\/a>, before dropping sharply from 1996.<\/p>\n Globally, AIDs-related deaths increased through the 1990s<\/a>, peaking in the mid-2000s with almost 2 million annually. That toll has since halved.<\/p>\n Since 1996, antiretroviral therapy (ART) has grown increasingly sophisticated compared to the complex regimen required of patients at the beginning.<\/p>\n \u201cIt was a bit of a full-time job,\u201d says Haire.<\/p>\n \u201cWith one of them, you needed to be drinking about three litres of water a day. With the first one that was released in Australia, its bioavailability wasn\u2019t great. You had to take it at really strict intervals, and you were asked to take it alongside grapefruit juice.\u201d<\/p>\n Standard ART today requires just one pill a day, similar to the government-subsidised pre-exposure prophylaxis (PrEP), which is the standard preventative medication for HIV.<\/p>\n Related Article Last year, the first twice-yearly injectable, lenacapavir<\/a>, was approved by the Therapeutic Goods Administration for use in Australia as a form of PrEP and treatment, though it\u2019s not yet available on the Pharmaceutical Benefits Scheme (PBS).<\/p>\n The life expectancy<\/a> of those taking ART has increased substantially in the three decades since its introduction, while the therapy has virtually eliminated partner to partner transmission<\/a>.<\/p>\n Indeed, in 2016, the campaign U=U, or Undetectable=Untransmittable<\/a>, marked another milestone in our understanding of HIV \u2013 that if a person is on an effective antiretroviral treatment for HIV, they will reach an \u201cundetectable\u201d viral load and be unable to transmit the virus to sexual partners.<\/p>\n Today, an estimated 40.1 million people globally live with HIV and an estimated 30,890 in Australia<\/a> (28,940 diagnosed, 95 per cent of whom receive antiretroviral therapy).<\/p>\n Australia has aligned its national framework with that of the United Nations\u2019 global targets to virtually eliminate HIV<\/a> as a public health threat by 2030, although a UN report last month warned decades of progress were at risk as global funding dropped by one-fifth in 2025<\/a>.<\/p>\n \u201cIn 1996, we didn\u2019t know that completely suppressing a person\u2019s viral load really would stop transmission,\u201d says Haire.<\/p>\n \u201cIt\u2019s hard to underestimate how important that is \u2013 for a person living with HIV in 1995, you would think, \u2018OK, I\u2019m really likely to die of an AIDS-related condition sometime in the next 10 years\u2019.\u201d<\/p>\n \u201cNow, the knowledge that if you are taking your pills correctly \u2013 and that\u2019s not such a hard thing to do \u2013 your viral load is undetectable. You can\u2019t transmit. That is such a huge weight off people.\u201d<\/p>\n Australia\u2019s HIV-response has often been hailed as world-leading, which Haire puts down to the mobilisation of community.<\/p>\n \u201cThe medicine has been absolutely extraordinary. But the medicines themselves aren\u2019t effective without a context \u2013 which is about government putting policies into place and funding for community organisations that ensure that there can be informed and respectful partnerships between communities and researchers,\u201d she says.<\/p>\n For Johnston, one of the period\u2019s legacies was a reframing of how we think, and talk, about disease more broadly.<\/p>\n \u201cHIV forged the concept of living with HIV\/AIDS rather than being a victim, which was a huge rhetorical shift,\u201d he says.<\/p>\n \u201cAnd that rhetoric has been taken up by breast cancer, bowel cancer, every psychiatric illness, all of those diseases have taken up that notion, and I don\u2019t think that\u2019s ever been fully acknowledged of where it came from.\u201d<\/p>\n It\u2019s been heartening too, to see his novel resonate with younger generations.<\/p>\n \u201cThe number of people and the full spectrum of queer people who came to a book fair I was at, who were genuinely interested in [the book], were interested to find out the history and admitted that they didn\u2019t know much about it, that was just really warming for me,\u201d he says.<\/p>\n In 1998, Jacob Boehme was just starting his career at Sydney\u2019s NAISDA, the country\u2019s premier performing arts college for Aboriginal and Torres Strait Islander young people, when he was diagnosed with HIV.<\/p>\n \u201cI was just a little 20-something dance student having a gay old time in Sydney, and at the tender age of 24 I noticed that I had a cold that I couldn\u2019t shake for months,\u201d he recalls.<\/p>\n It was during a traditional dance class, facilitated by Aboriginal elders, that he first realised something might be wrong.<\/p>\n \u201cAunty Peggy stopped me, and said, \u2018Come and sit here\u2019. She started doing traditional healing over me. Her and Aunty Mona started to sing over me,\u201d recounts Boehme.<\/p>\n \u201cAt the end of it, she turned around and said, \u2018Everything\u2019s red, I can\u2019t help you, you need a western doctor.\u2019\u201d<\/p>\n For Boehme, when a teen venturing out underage to Melbourne\u2019s gay nightlife, the disease had always been a spectre.<\/p>\n \u201cI was sh-t scared of HIV ever since I was like 13 when the bowling alley ad with the Grim Reaper<\/a> came out. And I was well aware of my sexuality by then,\u201d he says.<\/p>\n Later in Sydney, he was introduced to Anthony, the partner of a dancer friend, who had been diagnosed with HIV and committed suicide not long after.<\/p>\n When he received his own diagnosis, Anthony and the Grim Reaper ad of his youth came hurtling back.<\/p>\n \u201cI thought, \u2018Get ready for an early death. There goes the idea of having a relationship or a marriage.\u2019 I just started saying goodbye to all of that.\u201d<\/p>\n \u201cWhat I\u2019d only ever seen in media was lots of stories about gay men who had sex and died, and I wanted to see a story about a gay man who fell in love and lived.\u201d<\/p>\n Jacob Boehme, an Indigenous, gay artist living with HIV<\/p>\n Boehme\u2019s experience was common for those diagnosed with HIV before ART, which was Coined Lazarus Syndrome<\/a> after the biblical figure Jesus raised from the dead. Many weathered the whiplash of facing certain death before reckoning with a second chance at life.<\/p>\n In 2017, Boehme premiered his solo show Blood on the Dance Floor \u2013 an exploration of what it means to be an HIV-positive, gay, Indigenous man.<\/p>\n \u201cWhat I\u2019d only ever seen in media was lots of stories about gay men who had sex and died, and I wanted to see a story about a gay man who fell in love and lived,\u201d says Boehme, who conceived of the show in the years leading up to this 40th birthday.<\/p>\n Today, alongside work as a writer, director and choreographer, Boehme facilitates Mob+<\/a> a First Nations HIV peer program supported by Living Positive Victoria.<\/p>\n \u201cThere has been a lack of resources or focused response on getting HIV treatment messaging directly to First Nations communities,\u201d he says.<\/p>\n \u201cThere needs to be targeted messaging that is translated so that people can understand it, other than a poster or digital campaign. It needs to be sitting down yarning [for example].\u201d<\/p>\n Like Boehme, Richard Keane, chief executive of HIV not-for-profit Living Positive Victoria, was diagnosed with HIV young, aged 19.<\/p>\n Related Article \u201cI wasn\u2019t very experienced in the ways of the world and really a little bit naive. I didn\u2019t have a whole lot of self-confidence. So in some ways I was quite a vulnerable young person,\u201d he says.<\/p>\n \u201cI was just starting uni, and I thought, \u2018Well what\u2019s the point of finishing that?\u2019\u201d<\/p>\n Then, aged 23 \u2013 just four years after his own diagnosis \u2013 he lost a partner to AIDS-related illnesses, alongside many close friends.<\/p>\n \u201cI was very, very lucky,\u201d says Keane.<\/p>\n \u201cI set myself an internal deadline of reaching 30. And here I am at 56 today.\u201d<\/p>\n \u201cIt\u2019s hard to explain what a life-changing thing [ART] was because I was so concerned about forward transmission of HIV that I would only ever have sexual relationships with other positive people.\u201d<\/p>\n Slowly, Keane has come to terms with a long life ahead of him.<\/p>\n \u201cThere was this sense of relief… I am so grateful every day and I sit here now 37 years later and I just can\u2019t quite believe, to be perfectly honest with you, that this is how my life would go,\u201d he says.<\/p>\n Diagnosed in 1989 before the advent of combination therapy, Keane, like many other community members, put his body through the rigours of trials for early experimental drugs.<\/p>\n He lives with the permanent side effects from some of these experimental drugs, including peripheral neuropathy, a kind of nerve damage that causes pain, numbness and tingling in the arms and legs.<\/p>\n![\"In](\"https:\/\/www.newsbeep.com\/il\/wp-content\/uploads\/2026\/08\/388538aaf5c5acbd521738c0e4c9a08a263aa221.jpeg\")
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Greg Johnston and Rafal Hechmann at Sharpe\u2019s Pharmacy on Oxford Street, Darlinghurst c. 2003.Courtesy of Greg Johnston<\/p>\n![\"Jacob](\"https:\/\/www.newsbeep.com\/il\/wp-content\/uploads\/2026\/08\/38487e18b628a0581a6af7e3929a2b898f8450d3.jpeg\")
Jacob Boehme, a Narangga and Kaurna man and dancer and choreographer, was diagnosed with HIV in 1998 aged 24. Ruby Alexander<\/p>\n![\"Boehme\u2019s](\"https:\/\/www.newsbeep.com\/il\/wp-content\/uploads\/2026\/08\/0d22047b6fdcd6ec6137323750f4714aa32d75a9.jpeg\")
Boehme\u2019s Blood on the Dance Floor at Sydney Festival in 2017.<\/p>\n![\"78ers](\"https:\/\/www.newsbeep.com\/il\/wp-content\/uploads\/2026\/08\/c88bf8a93dc16d70bc018a4b33a6aef928343393.jpeg\")
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Living Positive CEO Richard Keane was diagnosed with HIV at the age of 19.Joe Armao<\/p>\n
![\"Mithrani\/Mithra](\"https:\/\/www.newsbeep.com\/il\/wp-content\/uploads\/2026\/08\/5e1d0de0bec70c73cf4fb0b9a554cf796cb1b8c0.jpeg\")
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