Mark Reid is been a key part of WAAC since its inception. So much of WAAC’s work and history exists because of the contribution of him and so many others. We asked Mark to speak at our launch event on 15 September and he was kind enough to share his knowledge and passion with us. Below is his speech with mild formatting changes
“As one of the people who was at the original community meetings way back in 1983, when we started hearing about a new disease that we had very little information about and also I suppose, as the longest serving former staff member, I have been asked to share some words about the history of WAAC and the HIV pandemic that has brought us to today.
When I talk to people about my own personal journey of living with HIV for over 35 years and my involvement in both local and national organisations I am reminded that are so many important things to reflect on and talk about.
The history of the pandemic here in WA and the history of WAAC is one that is of course interwoven and has many highlights but has also come with its challenges and heartbreak along the way.
I, of course, could not really do the history justice, unless we had 3 or 4 hours together to talk about all of the milestones and amazing things that WAAC has achieved over the past 36 years and I am sure you do not want to have to listen to me take for that long!
It is a history that is littered with so many positive stories but also with sadness at the number of people that we have lost along the way and some of the battles that we have had to wage, especially in the early days to educate and to be able to care for people in our community.
The beginnings of WAAC
To begin I need to take you back to 1983 and 1984 when we started to hear about GRID (gay related immune deficiency) and this disease that there was not much information about. With some of the earliest infections in Perth and a community not really knowing what to do, community meetings were held to try and chart a way forward.
These early meetings were called by GAGS (Gay Activities Group Services) and CAMP Inc. to engage the community. They were held at the State Library and attended by over 300 people. They were filled with concerned community members who were scared and unsure of the evolving pandemic and how to deal with it moving forward.
It was fortunate in those early days that GAGS was there, because they took money that they had been fundraising to seed fund the establishment of the WAAC. In May 1985 WAAC was born and the very first Coordinator of WAAC was hired.
Des Perry and two other staff were the initial trail blazers in setting out the vision and establishing WAAC as the community organisation to lead the HIV response in WA.
WAAC’s early days
Those early years were filled with activism on many levels.
The core of the work that was done centred around education and prevention but in those early days a large focus was also on care and support.
We have to remember that this was a time when there were no treatments on offer and when people were presenting, they often presented when they were really sick with a range of opportunistic infections and the only option was to try and treat with established medications and make them comfortable before they died.
After Des Perry left WAAC, Michelle Kosky stepped into the role of Executive Director and this time saw funding begin from the government for the first time and then in 1989 that was further enhanced with the release of the first National HIV/AIDS Strategy.
Early WAAC milestones
I want to highlight a few milestones that I know had an impact on me.
One of the things that we have not been very good at doing is retaining and documenting our history. This history is important to remember and has built solid foundations that has enabled WAAC to evolve into the organisation it is now coming back to.
We worked very hard in those early days to work with hard to reach communities, to establish the first needle syringe exchange programme and to set up and run care teams to ensure that people with HIV did not have to die alone in hospital but could come home and be cared for.
Care teams were a huge part of the work that WAAC did in the early years and saw teams of up to 40 volunteers trained by Silver Chain, RPH and WAAC to be able to offer care to people who were very unwell but who had little or no other support in their lives.
In those early days there was much disinformation and stigma and ignorance around HIV and we had families who disowned their children when they found out that they had an AIDS diagnosis and were left to fend for themselves.
Care team members came in and did the shopping, the cleaning, bathed, fed, cooked and offered emotional support to people with HIV at their most vulnerable. They made a huge impact on people’s lives and end of life care.
During that time we had over 15 or 16 different care teams working at any one time with over 250 volunteers. With the amazing coordination of staff at WAAC this was a service that really did have a huge impact.
Death was something that we had to deal with weekly and the impact on people was huge.
These times were difficult for all of us who were committed to supporting, caring and being there for our friends and family. The community grief was immense and saw the start during that time of the annual Candlelight Memorials.
We originally started having them in the grounds of St Mary’s Cathedral as Ward 10, which was where people with HIV were located, had a balcony that overlooked the grounds and so people in hospital could be a part of it.
But after two years the attendance of people in the community grew so large that we could no longer hold the event there. We would still meet there but then we would walk up to Forrest Place to hold a vigil with music, speeches, candle laying and the chance to reflect and remember people who we had lost in the previous twelve months.
Some of those vigils saw over 500 people attend and they were incredible gatherings of a community that was dealing with so many challenges but through it all was united together.
This was also the time that Perth Body Positive started, that would then evolve into People Living with HIV/AIDS WA. As a peer-based organisation that ran a drop-in centre for people with HIV and those affected by the virus, this was an organisation that worked side by side with WAAC. Even though there were at times some very robust discussions about how each group were doing their work and what they saw as the most important things to focus on, we always aimed to work together and create a united front to try and achieve the most positive outcomes for positive people in WA.
Educating the community on HIV
The landscape in those early years also involved the establishment of a public speaking program. The opportunity to engage with the general community to try and education them on prevention and safety became a cornerstone of the work we did.
Those talks would be given to schools, universities, businesses and any other group who wanted to learn more about HIV but more importantly had the chance to hear from a person living with HIV. We recognised early on that putting a face to the pandemic was an important tool in education.
I think I started going to schools talking about living with HIV in 1988 and along with Diane Lloyd and Luke Coomey did hundreds of talks in Perth and the regions. Those were challenging and interesting times but we all felt like we were making a difference in getting in the community and doing our bit to educate and inform.
The early days also saw the establishment of the AIDS Line (now the HIV Information Line) and we had a team of trained volunteers and staff who took calls. When it was first launched we were receiving hundreds of calls a week.
It became very clear that the pandemic was not just all about gay men and that more women were presenting to WAAC for support.
These were both positive women and also women who had positive children. These were the days when the future was not certain for many of these women and the issues they were dealing with in terms of their finances, wellbeing and emotional needs for the future of their children were central to them. There was a lack of information for women with HIV because most of the research that was being done was focusing on men.
Antiretroviral treatments come to Perth
With the introduction of AZT [azidothymidine] to Perth, there was the beginnings of hope that treatments might begin to play a role in moving HIV from being seen as a death sentence.
Those early AZT trials were horrendous! If you were accepted into the trial you were expected to take 1200 mg of AZT every 4 hours, which meant waking up in the night to take the medication. The side effects were awful and it was horrible to watch the impact it had on people who were already, in many instances very unwell.
If you can imagine already having 2 or 3 opportunistic infections and being incredibly unwell and then having to take 4 tablets every 4 hours, setting your alarm for doses in the middle of the night and then dealing with the severe side effects, you can begin to understand the harsh reality of those early days of treatment and what people were dealing with.
1994 saw the establishment of the Other Voices program in Gay Men’s Education that provided ongoing social space for young men to participate in gay education courses. Then the Youth Sexuality Project was born and the Freedom Centre became an important all genders space that got its own premises and recurrent funding.
1996 saw Highly Active Antiretroviral Treatments (HAART) discovered and trialed. This 3 drug therapy was quickly incorporated into clinical practice and saw impressive benefits for all who went on it. With a reduction in AIDS diagnoses, deaths and hospitalisation. We all know how much this has evolved and the incredible move forward there has been with treatment options for people with HIV here in WA.
The vital impact of fundraising for WAAC’s work
I would be remiss if I did not mention the important role that fundraising has played for WAAC over the past 35 years. With those first seeding donations from GAGS to the Black Dance Parties that began in 1988, the Perth Food and Wine Fair that ran for 4 years and then to STYLEAID that ran for 20 years, WAAC has had a commitment to diversifying its funding stream through fundraising so that it can participate and perform a range of functions that are not covered by its funding from the Government.
Speaking of this, many of the education campaigns that WAAC created over the years were funded this way and one of the most important and well-crafted campaigns was the Slip Slop Slide campaign. It was the first WA based campaign to be taken up nationally. It was the first time that the rest of Australia sat up and took notice of the work that we were doing here in WA, because up to that time most of the national campaigns were coming out of Sydney and Melbourne, even though we were creating many of our own innovative campaigns through the work of the Gay Men’s Advisory Committee.
WAAC has often taken the lead in recognising and establishing education and campaign work over the years. This has included the KISS project – Keep It Safe Summer, for leavers at various leaver events in Perth, the cyber reach online outreach project, the relationships campaign, the love bug tour – a road trip through the Midwest, northwest to provide sexual health messaging to rural and remote communities and the safe sex no regrets campaign that was rolled out on television and in cinemas in 2007 and 2008 for the first time in over a decade.
Then in 2010 there was the establishment and opening of the M Clinic. With the hard work of Ben Bradstreet and then WAAC CEO Trish Langdon, the vision of a sexual health clinic exclusively peer driven for men who have sex with men to be tested for STI’s was born. This was the first clinic of its kind in Australia and would soon outgrow its first premises as it became an integral tool for men to look after their sexual health.
Contributions of staff and volunteers
WAAC has been very fortunate to have had some of the most amazing people work on the staff of the organisation over the years. Each one brought a unique perspective and experience and we were very fortunate to have had a number of Executive Directors and CEO’s over that time who with the help of the Board of WAAC (in its different iterations) helped to shape how we moved forward as an organisation. As I mentioned before Michelle Kosky played such a significant role for a long time in those early years and she was followed by Chris Carter, Mark Goggin, Trish Langdon and Adam Bury. Each of those people left their mark on the organisation and did some ground-breaking and important work for WAAC.
There are of course so many other highlights in a 36 year history and I am sure any of you who have been a part of WAAC for any length of time would have your own memories of a variety of different things that we have been able to achieve.
It is important that we do not forget the road we have taken to get us to where we are today and as we move forward into new and exciting times we must remember how we got here.
The road has not always been an easy one and it has been filled with challenges that have had people in the community questioning the validity of WAAC over the history of the organisation and certainly the last few years has seen that become more evident, but with the appointment of Lisa Dobrin as CEO, we have finally seen a refocus and a reengagement with community that gives me great hope for the organisation moving forward.