Table Of ContentFIGHTING
FOR OUR
LIVES
Nick Cook grew up in Bathurst, moving to Sydney in 2009 where
one of his first experiences of the gay community was marching in
the ACON Sydney Gay and Lesbian Mardi Gras float. They dressed
him as Tchaikovsky but he declared he was Oscar Wilde instead. He
has been a journalist, professional writer and media manager in a
variety of positions. He currently lives on the Central Coast with his
wife and two young children.
‘ACON emerged in 1980s to give leadership in the Australian
struggle against HIV/AIDS. Soon that challenge expanded to a
myriad of new controversies: gay rights, drug use, sex work, trans
and prisoner experience. Nick Cook chronicles the terrifying early
years of the HIV epidemic, identifying heroes and villains. And
the story continues to this day to call forth our “better angels”.’
The Hon. Michael Kirby AC CMG, Past Justice of the
High Court of Australia and Patron of the Kirby Institute
To all the people affected by HIV/AIDS who refused to be
defeated by it, who rose up to create a new model of public
health and a better society.
Especially dedicated to those who did not
live to see what they helped achieve.
FIGHTING
FOR OUR
LIVES
The history
of a community
response to
AIDS
NICK COOK
A NewSouth book
Published by
NewSouth Publishing
University of New South Wales Press Ltd
University of New South Wales
Sydney NSW 2052
AUSTRALIA
newsouthpublishing.com
© Nick Cook 2020
First published 2020
10 9 8 7 6 5 4 3 2 1
This book is copyright. Apart from any fair dealing for the purpose
of private study, research, criticism or review, as permitted under the
Copyright Act, no part of this book may be reproduced by any process
without written permission. Inquiries should be addressed to the
publisher.
ISBN: 9781742236766 (paperback)
9781742244761 (ebook)
9781742249261 (ePDF)
A catalogue record for this
book is available from the
National Library of Australia
Cover design Sandy Cull
Internal design Josephine Pajor-Markus
Cover image Shutterstock/koosen
Printer Griffin Press
All reasonable efforts were taken to obtain permission to use
copyright material reproduced in this book, but in some cases
copyright could not be traced. The author welcomes information in
this regard.
This book is printed on paper using fibre supplied from plantation or
sustainably managed forests.
CONTENTS
List of Acronyms vi
Foreword vii
PROLOGUE: Lest we forget 1
CHAPTER 1: Bracing for the storm 9
CHAPTER 2: United we stand … 32
CHAPTER 3: Learning curves 68
CHAPTER 4: Leader of the pack 100
CHAPTER 5: Meeting at the margins 123
CHAPTER 6: Positive power 143
CHAPTER 7: United in anger 183
CHAPTER 8: Into the valley of death 213
CHAPTER 9: Light at the end of the tunnel 265
CHAPTER 10: Brave new world 306
CHAPTER 11: Broader horizons 328
EPILOGUE: Moving forward, looking back 354
Acknowledgments 363
Index 364
LIST OF ACRONYMS
Acquired Immune Deficiency Syndrome (AIDS)
AIDS Action Committee (AAC)
AIDS Coalition to Unleash Power (ACT UP)
AIDS Treatment Action Coalition (ATAC)
Australian Federation of AIDS Organisations (AFAO)
Bobby Goldsmith Foundation (BGF)
Community Support Network (CSN)
Gay-Related Immune Deficiency (GRID)
Gay and Lesbian Injecting Drug Use Project (GLID UP)
Health Education AIDS Liaison (HEAL)
Human Immunodeficiency Virus (HIV)
National Advisory Committee on AIDS (NACAIDS)
NSW People Living with HIV/AIDS Coalition (PLWHA (NSW))
vi
FOREWORD
We are now entering new territory in the struggle against HIV, a
struggle that is far from over. As we plan for the future it is crucial
that we have a deep understanding of the past. Everything that exists
today stands on foundations built by those heroes who came together
in the early days, at a terrifying time when everything they cherished
was at stake. We must ensure their sacrifices and achievements remain
part of our cultural legacy, and not just because we all owe it to them.
Their story is dramatic and fascinating, as you will soon discover, but
it is also incredibly important to our communities today.
There are lessons that can be drawn as we move forward, the
most vital being the root cause of their success. They were able to
build something unprecedented, an organisation that was guided
and managed by the communities it was designed to serve, and we
must always remain true to that original vision.
This project has evolved significantly since it was first discussed
in 2017. It was originally going to be a simple history of ACON
(AIDS Council of NSW), but we realised there was a bigger story
that needed to be told. It has become an examination of the broad
community movement that gathered in response to HIV/AIDS,
looking at the impressive contribution of organisations such as
the NSW People Living with AIDS Coalition (now called Positive
Life NSW), Community Support Network, Bobby Goldsmith
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FIGHTING FOR OUR LIVES
Foundation, ACT UP (AIDS Coalition to Unleash Power), Sydney
Gay and Lesbian Mardi Gras and others.
Meanwhile, we decided to end at the year 2000, giving us the
space to properly tell the dramatic story of those first two decades.
That was also the year that ACON expanded our services to other
health issues facing our communities, while keeping the HIV
response at our core.
Writing history is always a fraught operation. You only need to
look at the newspapers each day to know it’s impossible to find the
absolute truth about any subject. This becomes ever more difficult
when looking back through the decades. Memories differ, opinions
vary, sources contradict each other and there are inevitably gaps in
the material available.
Sadly, this applies to our story more than others because so many
of the key figures did not survive the epidemic. There are bound to
be flaws in our attempt to recount the events of that highly emo-
tive period, but that does not make the exercise any less valuable.
We believe the heart of the story has been accurately captured and
vibrantly told.
The research behind this history is both extensive and thorough.
Author Nick Cook has read the papers from every single ACON
committee meeting from the period covered in the book; every single
issue of crucial publications such as Sydney Star Observer, National
AIDS Bulletin and Talkabout ; all of the available newsletters from
important organisations and projects such as Fun and Esteem, Com-
munity Support Network and the Sex Worker Outreach Project; all
of the relevant interviews from the National Library’s AIDS Oral
History Project; boxes upon boxes of correspondence between var-
ious stakeholders; a vast range of contemporary media reports; and
much more besides.
Thousands of pages of notes have been gathered, carefully
arranged by subject and date, which now form an invaluable
viii
Foreword
historical resource in their own right. All of the documents and pub-
lications have also been digitised. One of the particularly touching
elements has been the collection of obituaries ACON placed in the
Sydney Star Observer.
Perhaps most importantly, lengthy interviews have been con-
ducted with those who lived through the darkest years of the epi-
demic. They have been heavily engaged throughout the entire
process, reading and commenting on the various drafts as they have
been written. It has been a truly collaborative journey – marked by
occasional disagreements – that is very much in the spirit of the orig-
inal community organisations.
To appreciate the book you are holding, it is first important to
understand what it is not. This is not a comprehensive account of the
HIV/AIDS epidemic in Australia. That would require several large
volumes and – a sad reality – it would likely be read only by a few.
Our guiding motive for this book has been to ensure younger
generations within our communities, as well as people in main-
stream society, are aware of the dramatic struggle that took place
throughout the 1980s and 1990s. In creating a history to engage
the broader public, we have focussed on a relatively small group
of people. They are no more deserving of recognition than many
others, though the contribution of each of them is impressive. They
were mostly chosen because they were the people who we know the
most about, whose stories we could tell in the most vivid detail.
It is hoped that their experiences can be seen for what they are:
a microcosmic indication of what entire communities were going
through at the same time.
To the thousands of people who deserve recognition but have
not been named, we express deep regret. ACON and the other
community organisations were not created by a small elite, but by
a vast group of volunteers, staff members and supporters. The same
goes for the many politicians, public servants, scientists and medical
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FIGHTING FOR OUR LIVES
professionals who deserve more recognition than we have been able
to give them in this history. Everything ACON are today, everything
they will ever achieve, was built off the back of your selfless efforts.
To all of you, we say thank you.
Worthy of note in ACON’s history and development is the
enduring relationship that has existed between ACON, successive
NSW governments and the NSW Ministry of Health. It is this rela-
tionship, which extends far beyond the traditional funding relation-
ship between government and non-government provider, which has
been, and continues to be, one of our greatest strengths. Our work
has been underpinned by respect, understanding, collaboration and
partnership, spanning policy development and program delivery. We
will always be grateful for placing our communities’ expertise, and
voices, central to the NSW HIV response, and we have never under-
estimated how meaningful and unique this approach is.
As we enter our thirty-fifth year, ACON is a strong, resilient and
important organisation to so many. We form an incredibly valuable
piece of ‘architecture’ in the state and national health landscape. We
have provided help and assistance, care and compassion, and kind-
ness and hope to many in our communities, and we have also shaped
local, national and global health policy and practices.
This history has helped us find the lessons of the past, which will
help us as we move into the future. New technologies offer previ-
ously unimaginable hope, but also make the task more complex than
ever. ACON are taking on a continually broader range of services
and responsibilities, but HIV remains at the core of our mission. Our
fight is far from over. We will never forget what it took to get us here,
nor will we allow the sacrifices of others to be wasted by accepting
complacency.
As you read this history you will feel a wide range of emotions,
particularly witnessing traumatic events that would be unthinkable
today. For those of you who remember those awful times, we hope it
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