“As I reflect on ACON’s 40th anniversary, 1985 is probably the same year that I acquired HIV (although I did not know that at the time). Today, in 2025, this year marks my 30th “anniversary” of nearly dying from AIDS-defining PCP. Fortunately, I was brought back from the brink at Concord Hospital: that was the good news… the bad news was that my life expectancy at that time was two or three years at best.
It was shortly after beginning to recover with friends and then moving back home that I first encountered the AIDS Council of NSW (now, ACON). The wonderful Tess Ziems came to my home to assess me for Community Support Network (CSN) care and support. Living on my own and still too weak to stand up in the shower, the prospect of receiving practical care at home with essential cleaning, shopping, and cooking was simply wonderful. I was immensely grateful to welcome CSN volunteers to help me continue living independently. Their cheery, non-judgemental, no fuss approach was so much appreciated. I have never forgotten those early days of my HIV/AIDS journey.
So much has changed for me over these past 30 years – especially the fact that I am still alive and now identify as a “long-term survivor”! My early experiences of efforts to treat my HIV were mixed: AZT monotherapy was no picnic but bought valuable time. Many prophylactic medicines were used to help ward off the “nasties”, like toxo. I participated in several clinical drug trials to support ongoing research efforts. However, unlike so many of my contemporaries (who I still miss to this day), I managed to survive until the treatment revolution of combination therapy commenced. The first generation of these ARVs did pose challenges: the daily pill burden (40+), spontaneous but unpredictable explosive diarrhea made for added anxiety when thinking about leaving home, as well as complicated medication regimes (with specific timings before/after food). In those days, drug companies would hand out promotional timing beepers to set medication reminders: during support group meetings, a cacophony of beeps would periodically ring out summoning people to their meds!
Again, ACON played a special part in my connection with others: a highlight was the weekly safe sex packing group sessions. Surrounded by a mountain of condoms, lube sachets and cardboard packaging we would chat and assemble these essentials for fun times (not always imagining that we might again participate).
Having been shunned by my “blue chip” employer, who could not wait to get rid of me – minus a permanent disability benefit because the company conveniently had an “AIDS exclusion clause” in their superannuation scheme – I wanted to reengage with society, but not the for-profit variety. Hence, I began several years first volunteering with and then working for HIV care and support NGOs, including NorthAIDS, Stanford House and, eventually, ACON.
Yes, due to successive treatment regimens, and the unfailing dedication of my doctor, I was still alive. I joined the ACON CSN staff team. Back in 1995, I would not have thought it remotely possible that I might one day be on the other side of the CSN office desk! Years of working in the HIV sector have been an utter revelation and a constant education. It was truly humbling to see at firsthand the challenges of my peers living with HIV, often confronting issues that had never come my way. I well remember visiting the homes of those reaching out for CSN support – many appeared somewhat shame-faced with their predicament of having to seek assistance, some saying “surely, there must be others more in need of support than me”. Yet, these people were precisely those for whom ACON’s CSN was designed.
I am now retired (again!), but since AIDS 2014 in Melbourne, I have volunteered around the world at several HIV/AIDS conferences: it is always a pleasure to see ACON staff presenting at important sessions, showcasing ACON’s pioneering work on the world stage.
I sometimes hear the word “legacy” being used in a disparaging way: outdated, irrelevant, old hat, obsolete etc. ACON’s HIV care and support work, such as CSN is a proud legacy: in the sense that it is something that remains from an earlier time, and is still needed. However, the work is not yet over: those of us now ageing with HIV (once thought impossible) are a reality and we have ongoing and additional health and wellbeing challenges in need of ACON’s continued efforts.
I likely will not see ACON’s 50th anniversary but applaud the contribution to the needs of people living with HIV over these past 40 years. Thank you, ACON.”
