Please note that my use of language here is deliberate, and of-the-time! I make no apologies for it!

The one thing that really got my back up during the Coronavirus/Covid pandemic was that this was touted as the most devastating pandemic of our times. There was the occasional nod to the 1918 Spanish flu pandemic, but it was almost as if the 40-odd year whispers about the most devastating pandemic of the modern era…HIV/AIDS…had never happened. I looked at the worldwide death figures from Covid, approxiamately 7.5 million, with many millions more recovering from it. I then compare this to the death rates from HIV/AIDS over the last 40+ years which stands at over 43 million and still rising (630,000 in 2023 alone) despite modern treatments. The difference between the two pandemics is staggering! And of course, up until 1996 and the advent of HAART (Highly Active AntiRetroviral Therapy), your chances of recovering from AIDS was almost zero!

In this day and age, your chances of living with HIV with no serious illness implications, and by taking 1 or 2 pills a day, is very high. Yes, stigma and discrimination still exist, and I would never downplay that, but for the ease of maintaining good health for the lifetime you may have it for, there is little recognition now for the 40 year battle that led to now! Most people who seroconvert now, due in many respects to generational experiences, have no knowledge of the history of HIV/AIDS, and may never encounter a long term survivor who has lived that history!

So, why is HIV/AIDS history important? Well for starters, the response was nothing like Covid! HIV/AIDS has to be viewed in its main time setting of the 1980s/90s. This alone is a historically important era, as the LGBT community gained rights under the laws of many countries, where we finally came out into the open and proudly displayed our sexuality to the world. In retrospect, HIV/AIDS could not have picked a worse time to raise its head! It’s effects upon a newly openly emerging sub-culture were devastating, and in a world where hatred, misinformation, prejudice and stigma were still rife within the general communities we lived in, for many it was a rough journey from being closeted, to being “out”. So, just as my journey as a late emerging 26yo gay male, just starting out on my sexual awakening, little knowing that three years later both that journey and my HIV journey would go forward hand in hand, so the journey of the LGBT community would find itself both politically and socially intertwined.

From a community perspective, HIV/AIDS created an affirming group of mixed people. That here in Sydney we created what was an LGBT ghetto gave us great strength. The vast majority of this community lived in the Darlinghurst/Surry Hill/Paddington/Newtown/Kings Cross areas, and in many respects our services were centred in these areas. We had our bars, hotels and nightclubs; our own retail strip; cafes and restaurants; our newspapers; medical, dental and legal services; community and support groups. A self-contained community within the wider communit. There was a security and strength within this.

And this is where the strength of the community becomes historically important when HIV/AIDS appeared in the early 1980s. Despite knowing very little about the origins or eventual outcomes of what was to become a worldwide pandemic, the community stepped in early to put both political, medical and support mechanisms in place, as what started as a dribble of cases became a waterfall.

Out of our community of both positive and negative individuals, gay men and lesbians, we started negotiating with politicians to make funds available to help set up support mechanisms, and fortunately we had the very foresighted health minister Neal Blewett conferring with our community on strategy. As a country, we were among the first in the world to start taking the upper hand with HIV/AIDS,to attempt to minimise its impacts

We established what are now long-standing groups for both political clout, and support for those infected. ACON (AIDS Council of NSW), NAPWA (National Association of People Living with HIV/AIDS), BGF (Bobby Goldsmith Foundation), CSN (Community Support Network), ANKALI, PLWHA (NSW) Inc (People Living with HIV/AIDS), ASHM (Australian Society of HIV Medicine), Maitraya Day Centre, NorthAIDS, HALC (HIV/AIDS Legal Centre), NUAA (NSW Users and AIDS Association), ACTUP, and many other groups (even an AIDS bus at one stage) had their foundations in the 1980s/90s, and many still continue today within the framework of an evolving pandemic.

A lot of negativity also existed alongside this. Misinformation raised its ugly head even in our hospitals, leading to disgraceful headlines regarding full contagion gear, meals being left outside patients doors. Politicians like the Rev Fred Nile openly created fear and religious discrimination through misinformation. People in contact with HIV/AIDS patients wouldn’t touch crockery, cutlery, glassware, bed linen, toothbrushes. There was no open dialogue about those infected sexually, through blood transfusions, or needles. Safe sex messages became confused, and the badly timed Grim Reaper ad appeared. There was a perception of HIV/AIDS being a “gay disease” even when it crossed over into the straight community. Virus’s do not discriminate!

The community itself suffered innumerable and relentless loss as the pandemic ravaged our social circles. Funerals were daily affairs, our newspapers death notices took up pages. It politicised Mardi Gras! St Vincent’s Hospital established Ward 17 South as a dedicated AIDS ward, and set itself up as the premiere health care hospital, along with palliative care at the Sacred Heart Hospice.

Money poured in…not always political funding, but from within the community itself. Pubs ran auctions, and groups like BGF established fund raisers such as the Bake-Off. We had dedicated HIV GPs, and PBS funding for HIV treatments were established, so that care and treatments were always within the financial constraints of those on pensions. Government departments such as Centrelink, and the Department of Housing came on board with fast track pension approvals, and rental subsidies. Centres, such as the Dental Hospital set up trials. Clinics became specialised. We established memorials such as the Candlelight Vigil, the AIDS quilt, World AIDS Day, and the AIDS Memorial Garden in Sydney Park, so that grief could be openly expressed, never alone, but nurtured within a group setting.

This is why HIV/AIDS history in important, not just as to how a community responded to a seemingly chaotic pandemic, bringing all its diverse aspects together to create support and care, but how we, as individuals, have our seperate and diverse stories of how our lives were, in many ways, empowered and enriched within the structures we had created. Our lives, and deaths, mattered.

This history must never be forgotten. Recent pandemics such as Covid could have taken lessons from these pages of history. There is strength in community, provided we evade the negativity of exclusion, stigma and prejudice.

Sometimes, instead of looking forward, we need to look back.

Interestingly, from a historic perspective, there has never been a review, detailed study, or a commission into the handling of the HIV/AIDS pandemic. It would be fascinating to see what was revealed!

And over 40 years down the line from the first infections, we seem to be no closer to having a vaccine, or method of eradication! At this time, despite being able to suppress it using antiretrovirals, it would appear that HIV still has the upper hand!

Tim Alderman ©️2025