Positive Life NSW

ACTUP. Photo: Ed Aspinall
Garry Wotherspoon looks back over the last twenty five years of HIV/AIDS in Australia and asks what lessons we have learned.

Just over a quarter of a century ago, Australia reported its first case of HIV/AIDS in Sydney. It was November 1982. And, just on twenty years ago, Positive Life (then PLWA) was formed, also in Sydney. It is an appropriate time to reflect on what we have learned during a generation of living with what was once called ‘the gay plague’: how it impacted on Australia, and how we responded.

Medical advances and a new confidence?

It wasn’t as though Sydney-sider’s haven’t endured and survived epidemics and pandemics in the past. There was smallpox in 1789, a measles epidemic in 1867, the Scarlet Fever epidemic of the 1870s, another smallpox epidemic of 1881-82, the Asiatic Flu Pandemic of 1890-91, the plague in 1900, and the ‘Spanish flu’ epidemic of 1918-19. All of these affected thousands of people, and sometimes the death rates were high. But from the early 20th century, a range of medical advances, including the use of antibiotics -sulphonamide (in the 1930’s) and penicillin (in the 1940’s), inoculations and vaccinations (such as the Salk vaccine for polio in the 1950’s) and strict quarantine regulations, led to a belief that medical science had at last got ‘disease’ under control. After World War II, Australians began to believe that these epidemics were a thing of the past and they would no longer face the diseases that had been common killers for their parents and grandparents.

Then along came HIV/AIDS – the ‘gay disease’

While we now know that HIV/AIDS is an infection contractible by anyone, it was first recognised amongst gay men, both in the USA and in Australia. No one knew what it was, how it was transmitted, or how to deal with it. Known initially as GRID (Gay Related Immune Deficiency), it was first thought to have something to do with the ‘homosexual lifestyle’. In NSW at that time, sex between men was illegal, and gays were still a little-known and less accepted minority in our multi-cultural society. This allowed the bigoted and prejudiced to start attacking ‘gays’. Moral pronouncements abounded, and there were calls for gays to be locked away; for Mardi Gras to be banned; for gays not to be allowed to travel in or out of the country; and for all gay venues to be closed. Media coverage didn’t help. Late in May 1983 the Daily Mirror ran the headline ‘AIDS: The Killer Disease that’s expected to sweep Australia’, while even The Medical Journal of Australia, in its June 1983 issue, showed on its cover a skull and an X-ray, and carried the headlines ‘The Black Plague of the Eighties...perhaps we’ve reached a situation like this to show us what we’ve known all along -depravity kills! Depravity?’

Gay men, depravity, HIV and fear

With no cure or vaccine in sight, HIV was seen as a death sentence. When several babies in Queensland contracted HIV and died, public opinion, fanned by hysterical media reporting, turned heavily against gay men. In those early days, fear and prejudice against gay men increased. Homophobia became more overt, and there was an increase in ‘gay’ bashing. Gay men may have noticed a distancing by their neighbours. Even in hospitals, people with HIV/AIDS sometimes found their food left outside the door by fearful staff. Even friends began to treat us cautiously, and death notices became a weekly reality in the gay papers. It certainly affected how people with HIV saw their own prospects. In the face of such negativity, many people with HIV and a perceived sense of looming death sold up everything, and enjoyed the proceeds with what was left of their life.

Community response

In the early 1980s, Sydney’s gay world was far more open and active than it was a mere decade before. There was an overwhelming response from within public health issue. The AIDS Action Committee was formed in mid-1983; it became the AIDS Council of NSW (ACON) the following year. It provided the basis for coordinating the gay community’s responses to AIDS, and later widened its activities to deal with all those affected by the disease. Death notices continued to appear. There were multiple responses from the gay community as it struggled to cope with the epidemic. It tried to get police assistance to stop poofter-bashing; it helped individuals bring cases before the state’s Anti-Discrimination Board; and a wide range of community based support services were established, to deal with various aspects of living with HIV/AIDS. These services included: specialised counselling services; ‘carers’ to help people with AIDS and AIDS-related issues; housing services; collectives to buy cheap bulk medications; and fundraising events. Non-gay people with HIV were not so well-served and indeed it was often on the basis of some of these groups that later, wider support services were built. Yet still the death notices continued to grow.

The genesis of partnership

The growing magnitude of the disease meant the gay community struggled to have enough resources to cope. Increasingly it turned to government for support. At the same time, governments (both state and commonwealth) became aware of the magnitude of the problems they were facing -both as a public health issue and as a social concern. They increasingly turned to the gay community, both for relevant information about ‘gay lifestyles’ and to utilise -and build on -the support networks already established. When HIV spread into the wider community, with awful social ramifications, the problem became more urgent. In July 1985, a newly-diagnosed three-year-old girl was banned from attending her local pre-school at Gosford, after fearful parents threatened to withdraw their own children if the girl was not removed. In the absence of a cure a national education program responding to HIV/AIDS was a key priority.

National campaigns, education and activism

The gay community helped to establish better education programs (about all aspects of HIV and AIDS). Some of these -like the Grim Reaper campaign -were highly controversial, but reflected the knowledge at the time. As more became known about HIV, and how it was transmitted, more targeted campaigns were developed. Indeed, as a result, an improvement in the level of sexual knowledge, not only in the wider community but even in schools had been achieved. As Time magazine reported, “condoms and sex [are] discussed openly on television like recipes on a cooking show”. It also made the following perceptive -and ironic -summation: “What liberals in large parts of the western world have advocated in vain for decades, fear of AIDS has achieved in a couple of years”. This was certainly the case in Sydney.

Driving many of these developments, was a major resurgence of political activism, both to fight for the interests of gay men and people with HIV/ AIDS. This resulted in bridging the gap between the gay movement, activists and the wider gay community. Out of this growing communality, activists were able to set up two very important groups – PLWA (People Living With AIDS as it was then) and ACT-UP (AIDS Coalition to Unleash Power). Faster access to medications, more research on the side effects, better treatment, and education programs targeting the wider Australian community, were on the agenda of those initial activist groups. Yet still the death lists grew.

Effective treatment and normalisation

Then in the mid-1990s, the whole scenario changed. Treatments improved dramatically, providing multiple combinations of effective antiviral HIV drugs. No one knew what the long-term impacts might be. Some of those side effects are still an ongoing problem today. PLWH/A NSW (as it had become) and ACT UP continued to fight to ensure that people living with HIV and AIDS were consulted about policies and campaigns, and better access to the new drugs.

Over the years, there has been a drop-off in concern about HIV, both among those likely to contract it, and even among those living with HIV. Nowadays, many of us trust our doctors to be up-to-date with the latest information, and provide us with the medications when we need them. HIV perhaps no longer has the centrality in the lives that it once did. We can get on with our lives. But there might be a downside too. The end of the ‘death sentence’ for people with HIV was achieved by the actions of communities, governments and educators working in partnership. But most importantly – I would argue -was the role of the activist, who kept our concerns on the agenda. With HIV increasingly viewed as a chronic illness, HIV is no longer a rallying point? Has the need for an HIV identity begun to wane? Only time will tell. However, a good measure of acceptance for people with HIV is whether disclosure is still an issue. Until disclosure IS no longer an issue... this question remains.

So what have we learned?

So we look back and see what lessons we can learn. One lesson is that, without adequate knowledge, fear and prejudice can take hold. Medical science did not initially provide answers about the ‘cause’ of HIV and ‘mode of transmission’. Health authorities were responsive to political pressures and demagogues could no longer determine public policies. Additionally, public health services were not geared to deal with the onslaught of a new epidemic and affected communities needed to be ready to respond and protect themselves.

Within the HIV community and the wider Australian community, (including the gay community), the role of HIV education was an important part of demystifying HIV/AIDS. Education should be based on rationality and reason: we have got to where we are today by respecting the importance of evidence, both from medical research and from our own experiences.

Also learned, is the importance of working together within our own community, with other communities (lesbian, CALD, indigenous, etc) and governments that have the resources to deal with such issues. It was the courage of people with HIV and AIDS, their willingness to be frank and open at a time when it was considered either foolish or dangerous to do so, that helped so dramatically in those early years. Having a focused HIV community, able to speak and act for us, still remains important, even essential. Indeed, who better than people with HIV to articulate our concerns to the wider world?

And if we continue to believe in that, we need never give up hope.