Alive and visible: the establishment of People Living With AIDS Victoria

A major development during this period was the establishment of People Living With AIDS Victoria (PLWA Victoria), which later became People Living With HIV/AIDS Victoria (PLWHA Victoria) and is now known as Living Positive Victoria.

The forerunner to PLWA Victoria was the People Living With AIDS Project, which was established through a meeting of several different groups working with HIV positive people around support services and treatment access. People living with HIV/AIDS (commonly referred to as PLWHAs)27 had for several years been operating their own support groups, often with assistance from the VAC and GMHC. Melbourne Positive Friends was initiated by a counsellor at the VAC/GMHC, Eric Timewell, and one of his clients, Morden Rigg, in 1986.28 Since then a place on the VAC Committee had been reserved for an HIV positive person, with Martin Golding the first to fill the role. In the late 1980s PLWHAs began to raise the profile of positive people in the community and to establish more formal structures. One of these groups was the AIDS Resources Contact (ARC), which was set up using a grant received from the National Advisory Committee on AIDS (NACAIDS). The funds were used to employ a part-time coordinator, Sheril Berkovitch, who helped members of the group establish a newsletter for PLWHAs, run social gatherings, and publish an information booklet to be provided to people upon first finding out that they had been infected. The ARC also conducted a survey of 100 HIV positive people to ask what self-support initiatives they would like to see established – the first survey of its kind in Australia.29

A political action group was also set up by HIV positive people with financial support from the VAC/GMHC and the Australian Federation of AIDS Organisations (AFAO): the AZT Taskforce. The main aim of this group was to lobby for a promising new antiretroviral treatment known as AZT (Azidothymidine or Zidovudine, marketed as Retrovir) to be made available to any HIV positive person who wished to access it. It was announced in 1987 that preliminary trials of the drug had shown that it was capable of blocking the reproduction of the virus and by 1988 Adam Carr was celebrating the remarkable impact that AZT was having on the epidemic:

The pressure on AIDS wards at St Vincent’s and Fairfield has eased, the crowds at the outpatient clinics have thinned and many people with AIDS have gained weight, recovered their sense of wellness and found it possible to resume their lives and return to work. There are now a significant number of people with AIDS who are alive who would probably otherwise be dead.30

The long-term viability of this highly toxic drug was largely unknown, as was its effectiveness for antibody positive people who had not yet developed full-blown AIDS. In addition, it had been found to cause significant side effects in many people. David Menadue was one of the first people to take AZT and recalls that it ‘proved to be a bit of a mixed blessing … it was a pretty horrible experience and I ended up having to have blood transfusions because of it’. He and many others continued to take large amounts of the drug every four hours as directed, ‘hoping that they [would] carry on until the next best thing came’.31

Despite its limitations, however, AZT was the first drug to bring real hope that the development of AIDS need not be an imminent death sentence. Unfortunately, access to AZT was not easy. The multinational drug company that distributed the drug in Australia, Burroughs Wellcome, provided the drug at a cost of about $10,000 per patient per year.32 For many people with AIDS and AIDS-related conditions in desperate need of treatment, this was simply not affordable. In early 1991 the VAC/GMHC set up a ‘buyers’ cub’ that arranged for the importation of new drug treatments from the United States and sold them at a subsidised rate to clients with a health care card.33 While Burroughs Wellcome was pressured to lower the cost of AZT, the federal and state governments were also urged to find a solution to the problem. Although it was only active for a short time, the AZT Taskforce achieved significant media publicity, organised a candlelight rally to draw attention to the issue, and even succeeded in obtaining a guarantee from the Victorian Health Minister, David White, that anyone who met the Department of Health’s eligibility criteria for AZT would be able to access the treatment.34

AIDS Resources Contact and the AZT Taskforce came together with other groups, including VIVAIDS, HIV Anonymous and a People With AIDS group from Fairfield Hospital, to establish the People Living With AIDS Project.35 The main aim of the project was to set up a centre for people living with HIV, AIDS and AIDS-related conditions, as well as their partners, families and friends. The project soon became a working group of the VAC/GMHC, establishing connections with other groups in the areas of Support, Accommodation and Education. Project members Chris Carter and Bruce Belcher were nominated to the VAC/GMHC Joint Advisory Committee.36

Four members of the project received funding to attend the Third National Conference on HIV/AIDS in Hobart in August 1988. Linking up with other PLWHAs from VIVAIDS and Positive Women, the group made banners and badges proclaiming ‘Alive and Visible’, and took to the stage in the final session of the conference to openly declare their positive status and to protest the invisibility of the positive community. They called on HIV positive people sitting in the audience to join them on stage, and for many it was the first time they had openly declared their positive HIV status in public. This ‘mass coming out’ is remembered by people who attended as being a particularly moving and emotional moment.37 It brought together the many different people affected by HIV: gay men, drug users, people with haemophilia and men and women who did not identify with any of these communities, as well as their friends, families, lovers and supporters, ‘to form a new, united fellowship’.38 The ‘Alive and Visible’ action was a pivotal moment in the history of HIV/AIDS in Australia, with PLWHAs taking unashamed ownership of their positive status. Bev Greet recalls: ‘It was a crucial time for visibility of people with AIDS’.39 For Bill O’Loughlin, it was the beginning of a gradual emergence of positive people during the late 1980s: ‘That was the most striking movement that occurred within the community over those years’.40

The conference inspired the formation of a national body, the National People Living with HIV/AIDS Coalition (NPLWAC), now known as the National Association of People With HIV Australia (NAPWHA). The first ‘Living Well’ conference was held two weeks later at Fairfield Hospital and St Mark’s Hall in Fitzroy. It was organised with the help of 96 volunteers and was attended by 167 people living with AIDS.41 This conference resulted in the formal establishment of People Living With AIDS Victoria.

PLWA Victoria, which later became People Living With HIV/AIDS (PLWHA) Victoria, wished to be an independent group, but without government funding it also needed the support of the VAC in order to establish itself. David Menadue recalls the tensions and debates resulting from the suggestion that PLWHA Victoria become part of the VAC/GMHC: ‘anger was expressed by some that VAC/GMHC would bureaucratise a body which should be “self-empowering”’ and able to criticise the VAC/GMHC if necessary.42 Others, however, believed that PLWA Victoria had to work within the VAC/GMHC in order to build up resources, networks and political clout. PLWA Victoria consequently became a program of the VAC/GMHC, replacing the People Living With AIDS Project. An office was set up at the VAC premises in Collingwood in late 1988 and the program was run by a volunteer committee and one staff member, Peter Charlton.

Several people who had been involved with Melbourne Positive Friends formed the core membership of the PLWA Victoria program, including David Menadue, Bill O’Loughlin, Bev Greet and Alan Perry. Bruce Belcher and Chris Carter were also instrumental in setting up the program with Peter Charlton. Carter – who had been a passionate activist with the PLWA Project and a founding member of the VAAC – became the first convenor of the PLWA Victoria program. David Menadue remembers him insisting on using the phrase ‘living with AIDS’ in the group’s name, to emphasise that people with AIDS were not dying but continuing to live good and productive lives despite the health issues they faced.43 AZT Taskforce spokesman Steve Pizaro captured this message perfectly during the campaign to widen access to AZT when he said, ‘We appreciate all that is being done to make dying easier for us, but what we want is a chance to live’.44

Although they fought for the rights of positive people to be heard and to live valued and productive lives, several early pioneers of PLWA Victoria did not themselves live to see the later achievements of the organisation. Tragically, Peter Charlton lost his fight with AIDS in March 1990. He worked determinedly up until his death ‘to establish the organisation … and to fight for positive people’s right to have a say in the decisions which affected us’.45 Bill O’Loughlin recalls that Charlton was the first person within PLWA Victoria to die of AIDS, and that his death had a significant impact on all who were involved at that time:

The consequence of that was implosive for the organisation … You have people that are coming together to form a movement who, particularly back then, were facing the fact that they were soon going to die. There was a huge amount of anger and bitterness and resentment, and a huge amount of expecting the unattainable, and demanding things that were not possible.46

Chris Carter and Bruce Belcher died in 1990 and the Annual Report for that year, ‘Reaching Out’, was dedicated to the memory of Carter, Belcher and Charlton: three men who had been so instrumental in establishing a voice for people living with AIDS.


References


Melbourne Positive Friends

Melbourne Positive Friends march at the Sydney Mardi Gras, 1993. David Menadue is pictured front left.

David Menadue

Sheril Berkovitch and Alison Thorne

Coordinator of the AIDS Resources Contact, Sheril Berkovitch (left) with prominent activist and founding member of the VAAC, Alison Thorne, in 1989.

Photograph by Helen Pausacker.
Australian Lesbian and Gay Archives

Retrovir protest.bmp

ACT UP members protesting against drug company Burroughs Wellcome, the distributor of antiretroviral treatment Retrovir (AZT).

Tom Worsnop

Third National Conference Hobart

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. This ‘mass coming out’ was a pivotal moment in the history of HIV/AIDS in Australia.

Tom Worsnop

AIDS Walk 1989, Peter Charlton and Chris Carter

Peter Charlton and Chris Carter, founding members of People Living With AIDS, at the AIDS Walk in 1989.

Living Positive Victoria

Chris Carter, Peter Charlton, Caroline Hogg

Chris Carter and Peter Charlton, who were instrumental in setting up the PLWA program within VAC, with Victorian Minister for Health Caroline Hogg, c. 1988.

Phil Carswell / Living Positive Victoria

Living Well Conference Dinner

Bill O’Loughlin, Chris Carter, Elizabeth Reid and Keith Harbour at a Living Well conference dinner, c. 1988.

Melbourne Star Observer Collection, Australian Lesbian and Gay Archives