History of PLWHA Victoria
As Presented in Looking Back - Moving Forward by: David Menadue
On a sunny day in July 1989 a group of people met at St Martin's Theatre in South Yarra to discuss setting up an advocacy group for people living with AIDS in Victoria. The idea had sprung out of the National AIDS Conference which had been held in Hobart that year - where a group of incredibly brave and visionary positive people walked up on stage at the closing plenary and announced that they were HIV-positive and that they were no longer content for positive people to remain an invisible part of the epidemic in Australia.
A member of this group was Chris Carter who was to become the first convenor of People Living With AIDS Victoria when it was established after that meeting at St Martin's. Two central people in coordinating that meeting were Peter Charlton and his partner Andrew Foster. Some of us at the meeting were positive, some were friends who just wanted to help positive people find their own voice in the epidemic. Chris Carter spoke about the need for a constitution and rules for the organisation and how important it was that positive people had control of the organisation themselves through as democratic structure as possible. Chris also suggested that we use the term “living with AIDS” to counter the view that everybody was “dying with AIDS”. There was no talk of any difference between people with HIV as opposed to AIDS at that stage: it was not to be until the early nineties that the Board of PLWA Victoria changed their name to People Living with HIV/AIDS Victoria.
Later that year in November the first “Living Well” Conference was held at Fairfield Hospital where positive people from around the country attended and the National People Living with AIDS Coalition (NPLWAC) was formed. This of course was to become the National Association of People Living with HIV/AIDS (NAPWA) in the early nineties – some of us still miss that catchy acronym which sounded a little like “nipple wack” or some sort of kinky s&m club!
1988—Early Advocacy Achievements
Early Convenors of PLWA Victoria included Les Taylor and Keith Harbour. Les was particularly well known for his efforts to get access to AZT for positive people. In those days the State Government had to find special funds for an experimental drug like AZT which did not have a licence for use in Australia. There was no Special Access Scheme for unapproved drugs as we have today. Les went on Good Morning Australia as one of the first openly positive people to appear in the media to that time. He spoke eloquently about the need for positive people to have access to the first drug that was known to have any anti-HIV properties. Les and Keith Harbour were also instrumental in getting the AIDS branch of the Health Department as it was then, to agree to fund a Community Centre for people with HIV. A positive woman, Deborah Gillies was employed by the Victorian AIDS Council to do a feasibility study into the Centre in 1989.
People with AIDS Victoria was given an office and staff member in late 1988 at the Victorian AIDS Council, then located in Johnston Street in Collingwood. Peter Charlton was our first employee and he worked tirelessly to establish the organisation, to get the Program Management Committee (PMC) working and to fight for positive people's right to have a say in the decisions which affected us. It was Peter Charlton who first talked me into becoming a part of the PMC when Keith Harbour was Convenor (having just stepped down after a very active period as President of VAC). I was still recovering from my first AIDS-defining illness, a bout of PCP, and I wasn't sure how much energy I had to put into the organisation. I was lucky enough to get better but during 1989 we lost Peter Charlton to the virus and a range of other key activists including Chris Carter, Les Taylor and Keith Harbour were to die over the next few years.
1989-93 - The Search for a Community Centre
In October 1989 I was elected Convenor of PLWHA Victoria and worked closely with Dean Michael as Coordinator, David Stephens as Information Officer (doing Positive Living magazine and the Speakers Bureau) and Barbara (can't remember her surname-sorry!) who worked on finding a site for the new Positive Living Centre. We looked at some thirty sites trying to find one that would meet stringent council parking and planning requirements. When we finally found one in Caulfield, on Dandenong Road, a huge hullabaloo was created by local residents who complained to Council about the likelihood of wild, drug-sharing parties, unsafe injecting behaviour (leaving needles over the fences) and too much extra traffic in the area. What they didn't say was that they were worried about land values and the thought that having an AIDS centre there might affect them.
In my first public statement as Convenor I held a press conference with well-known HIV community identity Joan Golding to try to put pressure on the Council to agree to our planning application and to de-bunk all those fears about us being a bunch of wild party animals! It attracted all the major TV stations and press and received a huge amount of publicity. The fact that people with AIDS themselves were prepared to stand up and challenge the local Council was part of the story. We lost the battle as Caulfield Council elections were the following month and councillors realised what a “hot potato” this issue was for their re-election! We did manage to find a far superior venue anyway – at 46 Acland Street, St Kilda and with a far more friendly local council as well. The Mayor John Spierings opened the Positive Living Centre in early April 1993. The Elton John Fund provided funding for the Centre's chairs, Julian Clary visited the Centre one day and helped with fundraising, and an enormous amount of support came from the HIV community (particularly through volunteer work) to establish the PLC as the hub for positive people and their friends for that time.
People Living with HIV/AIDS Victoria was still a program of VAC/GMHC at that stage and our program had the responsibility of managing the Centre in St Kilda. Program managers included Chris Gill, Bill le Neuf, Kirk Peterson and Barry Horwood. It soon became clear to the Program Management Committee that a significant amount of the time of the committee was taken up with PLC matters and the work of advocacy for positive people across the state sometimes had to take a back seat. This problem was partly addressed by setting up a separate PLC Committee but that still had to report back to the PMC for endorsement.
The program did have some major advocacy issues that we had to deal with at this time. These included the fight to keep Fairfield Hospital open when the Kennett Government started to make noises about that idea in 1994. After I stepped down from the role of convenor in 1993, Ian Cameron had the role for a year followed by James Nagle. Joe McCluskey took over after James's death. It was a difficult time for the organisation, with the high number of deaths at that time (there were no effective drug regimens available) and with the community anger over the threats to Fairfield. A group of positive people led by Bradley Engelmann had successfully managed to get elected to the Victorian AIDS Council Board in 1994. Engelmann became President and Nagle and then McCluskey Vice-President and there were a number of other PLWHA Vic Board members on both Boards.
1994 – Division on the VAC/GMHC Board
By the end of that Board's period of office in October 1995 though it was clear that a sharp division had developed in the Victorian AIDS Council Board over the future direction of the organisation. There was some dissatisfaction with the Executive at the time that led to an unpleasant spat in the gay press and in the HIV community. In the 1995 elections Joseph O'Reilly was to replace Engelmann as President of Victorian AIDS Council/ Gay Men's Health Centre (VAC/GMHC) but a factionalised Board still existed. The Board resigned, essentially over a failure to agree on which hospital (St Vincent's or the Alfred) should receive the carryover of services after the closure of Fairfield Hospital.
While clearly this was about the Victorian AIDS Council's governance and not PLWHA Vic's, our organisation was highly involved as we had several people on both Boards and ultimately VAC/GMHC was still in charge of us. A review of the organisation in 1995/6 recommended that major changes happen to the culture of VAC/GMHC. It was also recommended that PLWHA Vic become an independent organisation with its main role being advocacy for positive people. It was said that we should be there to monitor or criticise service providers - such as the VAC/GMHC - and to not do service delivery ourselves. This was the model for PLWHA NSW, which the reviewers felt would work in Victoria.
1997—New Constitution and Rules
Gary Glare was Convenor for a short period during the transition to a newly constituted PLWHA Victoria in 1997. The first President was John Daye plus a number of office-bearers including Greg Horn and myself. At the first public meeting to establish the revamped organisation held at the Royal Women's Hospital, a new Constitution and Rules were adopted. Our first Executive Officer was Bridget Haire. She set about working with the Board to establish the new ways for the organisation to function – including writing up a Memorandum of Understanding and a Funding and Services Agreement with VAC/GMHC. Funding was later granted by VAC/GMHC for a part-time Administrative Assistant and Speakers Bureau Coordinator – the first and only appointment to that position was Max Niggl (who continues to this day).
The difficulties with the concept of PLWHA Victoria being only an “advocacy” organisation have been clear to Board members right from those early days. Those of us who were involved with the old Program Management Committee that ran the Positive Living Centre (unfortunately not many people carried over to the new organisation) were angry and perplexed about the Review's recommendation that so much of the old organisation's resources were taken from us and given to VAC/GMHC. There was some acceptance of the need for change and some acknowledgement that managing the PLC had dented the organisation's ability to concentrate on advocacy issues. But we were unhappy to be left with such a small Budget and staff - initially only one staff member and later a part-time assistant. We wanted a Peer Support Officer and a Treatments Officer and a decent budget to work with. For a while we worked with very little and our relations with VAC/GMHC management were strained.
1999 – Increased Harmony and Achievements
Since the arrival of Mike Kennedy as Executive Director of VAC/GMHC in 1999, relations between our two organisations have improved remarkably and there has been a small but significant rise in resources including a part-time Treatment Policy and Education Officer (Alan Strum) appointed in the past year. In 1999, Mark Boyd followed Bridget Haire as Executive Officer and he was able to set up well-received initiatives for the organisation including developing the PLWHA Vic history exhibition Legends and magazine Poslink, getting funding for the PLWHA Bushwalking Project and the AIDS Trust grant for the Connect project. David McCarthy followed in 2001 and he managed to increase the media profile and community alliances of the organisation remarkably. Our current Executive Officer Mark Thompson was appointed in June this year.
The past few years have seen some highly commendable achievements for the organisation. They can be seen in the list of Major Achievements and Initiatives that are listed alongside. Some of these have included initiatives such as the Speakers Bureau, which educates school children and many others around the state about HIV/AIDS. It includes the Treatments Interactive Events that have produced a very successful format to educate and inform positive people over treatments and health promotion needs. Of our long list of advocacy achievements, we were particularly pleased to have obtained the promise by the then Health Minister John Thwaites not to introduce co-payments for medications at the Melbourne Sexual Health Centre. This major lobbying effort on our part, largely carried out by President John Daye, has saved positive people from what could have been a major increase in their health costs. Other lobbying efforts of note included stopping the introduction of co-payments at Dental Plus, ensuring that Fairfield House was built, achieving drug and alcohol staff and a psychiatric liaison staff position at the Alfred Hospital, negotiating for the introduction a New-Fill trial at the Alfred Hospital and managing to change a Federal Government policy which stopped positive people accessing Options Employment Services.
A Proud History
To look back at fifteen years of history for PLWHA Victoria, I think is to acknowledge an organisation that has made a big difference in improving the lives of positive people around the state through its advocacy, support and - it has to be acknowledged - service delivery. We help hundreds of positive people every year with a range of issues including housing problems, difficulties with medical providers, assistance through our Emergency Distress Fund, information and advice on the latest treatments, to name a few. We have a strong, respected community profile, are represented on major Government committees on HIV, gay law reform and health and play a major role on a national level with the National Association of People Living With HIV/AIDS. Positive people around the state can be proud that we have weathered some very difficult times, when so many of our number have died and it hasn't always been easy to maintain the energy and activist zeal which the organisation needs to survive.
We have survived though, and I can confidently say that, at this stage, the organisation is in as healthy and secure a place as it ever has been. I would like to give particular credit to our President John Daye for achieving this outcome, as I believe it is his leadership and hard work that has particularly helped the organisation to be in the strong position it is in today. The various Boards over the last few years have played a major role too as have our excellent Executive Officers and staff. It would be too much to wish PLWHA Victoria another fifteen years - we want the AIDS epidemic to be over much before that! But for as long as is necessary, may the organisation continue to fight hard to achieve fair and just outcomes for people living with HIV/AIDS in this state.