Australia’s first AIDS-related death was in Melbourne in July 1983. Not only has the world changed considerably since then but the shape of activism has changed too. This 30th anniversary is an opportunity to look back on the history of HIV activism and consider its future.
The people who gathered together in the early and mid-1980s were part of a much less connected world. Their information came from overseas contacts, travel and gay publications. From 1982 onwards, overseas sources suggested that gay men were suffering mysterious symptoms of compromised immune systems. Growing numbers of men were being diagnosed with the previously rare form of cancer, Kaposi’s sarcoma, and other devastating opportunistic infections.
When HIV first reached Australia, activism was centred on AIDS Councils, which formed very quickly. These organisations were not exclusively gay and lesbian but their membership came from this community. The Victorian AIDS Action Committee (now the Victorian AIDS Council) met for the first time at Melbourne’s Laird Hotel in July 1983. Similar AIDS Councils were established in Queensland, South Australia, Western Australia, Tasmania, NSW and the ACT between 1983 and 1985. The Australian Federation of AIDS Organisations (AFAO), founded in 1985, served as a national umbrella organisation. These community-based organisations drew heavily from New York and San Francisco models.
Individuals from a wide range of backgrounds, including some marginalised groups, joined together to work with bureaucratic structures to formulate a response to HIV in Australia in the 1980s. Many of those dealing with the toll of the epidemic had been poorly treated by both government agencies and medical authorities in the past.
The Australian response to HIV in the 1980s has justifiably received much international acclaim.
Many of those who remember the early years of the AIDS epidemic reflect on the way that AIDS Councils were staffed by volunteers. In an oral history interview held by the National Library of Australia, academic and writer Dennis Altman
describes the individuals who led these Councils as ‘heroes’. The federal government was largely supportive of these organisations and was prepared to empower individuals to educate others about HIV.
During the 1980s and 1990s, office bearers in AIDS Councils, alongside community volunteers including many who were living with HIV, manned telephones and gave talks to organisations such as Lifeline and state and regional health services. Members of the heterosexual community, including some women whose sons had been affected by HIV, also gave time and energy as volunteers. There are numerous accounts of people across Australia doing what they could to assist, including bringing pots of soup into the headquarters of the Queensland AIDS Committee or spending days and nights caring for and nursing people dying of AIDS-related illnesses.
Ken, who was living with HIV in Brisbane in 1985, volunteered with the Queensland AIDS Council in that year. He told The Courier Mail that he was getting valuable support from the organisation, felt he was playing a supportive role to others and was, in turn, receiving friendship and feeling less isolated.
HIV activism in the 1980s focused on very practical concerns. The medical profession was still learning about the virus so the earliest activism in Australia centred on making information about HIV available and supporting those who were directly affected. Many of those who lived through these years describe the difficulties of losing friends and lovers, while attempting to manage their own health and educate others.
Despite living through a time many liken to a war in terms of the loss of lives, many HIV activists remember the 1980s as a time when a community pulled together. David Menadue explains that "the desperation of the times (the '80s) meant more hands were needed on deck to do things that governments had often not funded HIV organisations to do".
David continues: "HIV organisations depended on volunteer workforces and community involvement was high. People wanted to help and that included rattling the cages of government when they weren’t listening to the needs of people who were dying or providing resources to communities-at-risk to try to stop new infections."
Although Australian activists generally had a better relationship with the federal government than activists in the United States, tensions became more obvious as the epidemic continued. People who were living with HIV became increasingly concerned that their needs and concerns were not being voiced.
A very significant event for HIV activism occurred with the formation of the National Association of People With HIV Australia. The organisation can trace its origins to the 1988 national AIDS conference in Tasmania, when, during the closing plenary, 20 activists took to the stage and demanded that HIV-positive people be represented in the AIDS response.
It was the first time in Australia that a group of people stood up and self-identified as HIV positive. This action led to the establishment of the National People Living with AIDS Coalition (NPLWAC) – an advocacy organisation with the primary mission of increasing positive representation on a national level and which was later to become NAPWHA.
One of the major points of contention between Australian activists and government focused on access to HIV medications such as AZT. This medication was initially thought to slow the frequency and severity of AIDS-associated opportunistic
In 1990, the tension between AIDS activists and government erupted when protesters interrupted a speech by Federal Health Minister Brian Howe at the National AIDS Conference, demanding that the process of approving experimental HIV medications such as AZT be fast-tracked.
At that point AZT was given only to people with T-cell counts below 200. This contrasted with the US and Canada, where people living with HIV had access to the medication before they became sick. In Australia, people living with HIV were particularly concerned that access to medication was proving difficult and that HIV-positive people were not being given more agency in the process of medical treatment.
The American activist group ACT UP, which had been formed by Larry Kramer in 1987, addressed the concerns of many Australian activists and particularly those of people living with HIV. On 10 April 1990, more than 80 people met to form a Sydney ACT UP chapter. A number of people involved with this first meeting had attended an emergency drug meeting that had been called by People Living With AIDS (PLWA) NSW to discuss a lack of treatment and to urge the formation of ACT UP. Members of other marginalised groups, including sex workers, were also part of this activism.
The first Sydney ACT UP protest involved more than 50 members who demonstrated at the federal health department, targeting the Australian Drug Evaluation Committee, which was responsible for drug licensing and for AZT only being available for people with CD4 counts of 200 or fewer. Other chapters of ACT UP were launched in Melbourne, Brisbane, Canberra and Perth before the end of 1990.
ACT UP was highly active across Australia in the early 1990s, with a range of protests, actions and zaps that varied in size and impact. One of ACT UP’s major campaigns took place on 6 June 1991, designated ‘D Day’.
It was to draw attention to delays in the approval process for medication needed by people living with HIV. On this date, a series of coordinated protests took place across Australia. In the early morning, members of Melbourne ACT UP removed the flowers from the Melbourne Floral Clock, replacing them with white crosses. In Canberra, members of ACT UP held a candlelight vigil, stitched a memorial quilt panel and, most spectacularly, blew whistles in the House of Representatives, while two men jumped over the Public Gallery balcony into the chamber. Geoffrey Harrison, who was involved in the Canberra actions, recalls, "it was pretty amazing to see Parliament stopped". Collectively, the ‘D Day’ actions did generate considerable media attention both nationally and internationally and as Harrison remembers, "put our message out to other people".
ACT UP also drew attention to other issues, such as the treatment in the media of people living with HIV. In one press release from 14 August 1991, Sydney ACT UP asserted that "with a few outstanding exceptions, the Australian media has had a shameful record of reporting on HIV and AIDS issues. People Living with HIV and AIDS in Australia are daily insulted and disenfranchised by the media’s common use of terms such as 'AIDS victim', 'AIDS carrier', 'AIDS-contaminated blood' and worst of all, 'innocent victims'."
Throughout its most active period, ACT UP in Australia maintained strong links with the state-based AIDS councils and with activists who worked within bureaucratic structures. Many were involved in both AIDS councils and in ACT UP. Lloyd Grosse remembers using the office facilities of the AIDS Council of NSW to produce some work for ACT UP. In a notable campaign from 1991, members of ACT UP in Melbourne worked with members of the Victorian AIDS Council to protest the threatened closure of the Fairfield Hospital, which had particular expertise in HIV treatment.
By 1993 it became clear that the type of activism practised by ACT UP was in decline.
Emotional exhaustion had taken a toll on many members. Others had been affected by ill-health or had died. The 1991 Baume Report had appeared to address many of the concerns ACT UP held about the approvals process and access to medication for people living with HIV. The development of new antiretroviral drugs in 1994 and 1995 also provided new hope and changed the focus of AIDS activism in Australia. Finally, ACT UP in the US, which had provided a level of inspiration and a model to be adapted in an Australian context, was also on the wane.
Ironically, the success of ACT UP in achieving respect and inclusion for people living with HIV meant there was no longer a need for the organisation. Once people living with HIV had fought successfully for their inclusion and empowerment in the medical treatment process, the need for ACT UP receded.
Two of the most important shifts in HIV activism have occurred relatively recently. In 1994 and 1995, there was a significant breakthrough with the success of combination therapies, which greatly extended the life expectancies of many people. The remarkable growth of the internet since the 1990s has also changed the way people organise and support each other.
Some people criticise the state of activism in modern Australia, arguing that the country has become something of a ‘slacktivist nation’. Perhaps it is fairer to note that activism is still powerful but that its modus operandi has shifted. Many who were involved with AIDS councils, ACT UP or people living with HIV organisations in the late 1980s now use the internet for communication and support. Both Geoffrey Harrison, who was very involved with ACT UP in Melbourne, and Lloyd Grosse, who was involved with the AIDS Council of NSW and ACT UP, view the internet as a positive way of organising, maintaining contact with friends from the past, and reducing isolation.
David Menadue believes that activism is alive and well in Australia today. "If you accept that activism can be done within effective government-funded community structures. If you believe that true activism occurs when groups are completely independent of government and largely involves rallies and street protests, we are certainly failing on that score. I prefer the robustness of government-funded HIV organisations that have built up respect from governments and are able to push boundaries with them about the necessity to get effective messages across to affected communities."
The history of HIV activism in Australia is a remarkable one. It is a story of a marginalised group of people working closely with the federal government to achieve better outcomes for themselves and others affected by HIV. Activism has ebbed and flowed.
The initial years of the HIV epidemic saw a mass voluntary effort that deserves to be remembered. In 1988, the formation of the National People Living with AIDS Coalition (as NAPWHA was then known) gave HIV-positive people a forum in which to make their concerns and voices heard. By the 1990s, these voices were steering activism in a powerful and innovative direction. ACT UP offered a way in which to express their concerns and to lobby. More recently, advances in treatment options for people living with HIV and the internet have shifted the scope of activism. But it is clear Australia’s world-leading response has been driven by extraordinary individuals living through incredibly challenging times.
Dr Shirleene Robinson is a Vice Chancellor's Innovation Fellow in Modern History at Macquarie University. Her current research focuses on HIV and volunteerism in Australia. She wishes to thank Ross Duffin, Lloyd Grosse, Geoffrey Harrison and David Menadue for their generosity in sharing their experiences with her in 2012 and 2013.
Photos from top:
- Timothy Conigrave, Rob Lake, David Edler and Aldo Spina at an ACT UP rally in Sydney. Photo: Positive Life NSW
- D-Day protesters at Flinders Street Station on 6 June 1991 when members of ACT UP staged radical protests across the country, using the letter ‘D’ to represent the words deaths, drugs, delays and deadline. Photo: Australian Lesbian and Gay Archives
- Attendees at the third National Conference on HIV/ AIDS in Hobart in August 1988 took to the stage to openly declare their positive status and protest the invisibility of the positive community. Photo: Tom Worsnop
- Keith Harbour arrested on the steps of Parliament House, Melbourne during an ACT UP demonstration in 1990. Photo: Living Positive Victoria