The challenges and milestones

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01 Jun 2015

In the middle of 1981, an innocuous article appears in the Sydney Star Observer mentioning an unidentified illness affecting gay men in New York and San Francisco. Nobody knows what it is or what has caused it. Or, for that matter, what to call it (it initially goes by the acronym GRID — gay-related immune deficiency). It becomes known as Acquired Immune Deficiency Syndrome —  AIDS.

The first Australian case is notified at St Vincent’s Hospital, Sydney in October 1982. Australia’s first AIDS-related death occurs nine months later at Prince Henry’s Hospital, Melbourne. Australia quickly mobilises a national collaboration of governments, clinicians, researchers, community advocates and activists, policymakers, public health experts and — crucially — people with HIV.

“We were respected for our knowledge of what was happening in the epidemic and what needed to be done,” says Bill O’Loughlin, who has been living with HIV since 1982. The active involvement of people living with HIV (PLHIV) proves crucial to the Australian response.

As does the bipartisan approach adopted by political rivals Labor health minister Neal Blewett (pictured) and shadow counterpart Peter Baume (pictured). Blewett takes the lead on policy while Baume backs him up. “Peter Baume played a major role,” remembers Blewett. “He kept the recalcitrants on his side very much in line.”

Community action

Various communities start to pull together for a political response to HIV and, in 1983, AIDS Action Committees form across the country (later to become AIDS Councils). Organisations providing practical support are established, such as the Bobby Goldsmith Foundation (set up in NSW in 1984) and the David Williams Fund (formed in Victoria in 1986).

ACT UP (AIDS Coalition to Unleash Power) also emerges, protesting the delay in getting the few drugs available to those in desperate need. Pressure from the organisation — including a series of ‘die-ins’ — leads to a change in the rules allowing people to import unlicensed medication for personal use.

“Histories of HIV often make heroes of doctors and governments, and ignore the key role played early in the epidemic by communities at risk,” says Ross Duffin, former AIDS educator and activist.

Drug use
Australia introduces a pioneering needle and syringe program for injecting drug users; the scheme is rapidly rolled out across the country. With only 1.9 percent of HIV infections in Australia attributable to injecting drug use (IDU), the initiative has proven extremely effective. In contrast, the US has an IDU HIV infection rate of 20 percent.

It’s not long before it’s discovered that a retrovirus is the cause of AIDS. It is named the human immunodeficiency virus — HIV. But while the cause of AIDS has been identified, there is no cure, and no treatment. And in Australia between 1984 and mid-1985 there is a 540 percent increase in HIV infections.

“This period was one of the toughest times being involved in HIV care,” says Mark Bloch, who has been working in the sector since 1983. “Many of those who became positive in the peak period of the mid-1980s were becoming sick. There were so many lives cruelly cut short so young.” As the ’80s end, death rates skyrocket.

Fear of the unknown leads to mass misinformation, with people believing they can catch AIDS from kissing and hugging, or by sharing a water bubbler — or a toilet seat. “It was a scary and volatile time in the public’s understanding of the virus,” says David Menadue, who was diagnosed in 1984. In an effort to counter the ignorance, the government decides to run a public awareness campaign.

Grim Reaper
It features a television commercial portraying the Grim Reaper knocking down men, women and children like nine pins. Although later credited as helping to successfully manage Australia’s response to HIV, the ad proves controversial, as it is seen to contribute to the stigma surrounding people living with HIV/AIDS. “We could see the point of the campaign,” says Menadue, “but we knew it would increase people’s fears about people with HIV as much as their fears about the virus.”

One of the key challenges for the government is to keep the population calm. “Medical science in many ways was baffled in those early years,” says Blewett. “It had all the ingredients of a mass hysteria and some of the press encouraged that with ‘we’re all going to die’ sort of thing.”

“Some public health officials, media commentators, and the inevitable religious right attempted to regulate and contain people with HIV,” says Menadue. It is suggested that the details of everyone diagnosed HIV be compulsorily notified to the authorities — including addresses. In 1984, Adelaide’s Advertiser runs the headline: “Place AIDS victims in quarantine”.

With their immune systems severely weakened, AIDS patients display a vulnerability to opportunistic infections such as pneumocystis pneumonia (PCP), mycobacterium avium complex (MAC) and cytomegalovirus (CMV). “People would get mysterious conditions we had never heard of before,” says Menadue, “and the reality of AIDS became clear.”

Criminal law is used to prosecute people for potential exposure and transmission of HIV. Regulation varies across Australia.
“Criminalisation of HIV exposure and transmission were often determined by opinion rather than evidence,” says Anne Mijch,
who co-established Victoria’s first HIV/AIDs service in the 1980s. “A number of vulnerable individuals were caught in vendettas and incarcerated.” This connection between HIV and the law exacerbates the stigma and discrimination already associated with people living with the virus.

Eve van Grafhorst is one of the first Australian children to become infected with HIV via a blood transfusion. Eve is at the centre of a media storm in 1985 when she is banned from her kindy in Kincumber, NSW, amid fears she might infect other children. She is allowed to attend providing she wears a face mask. However, the van Grafhorst family are eventually hounded out of their home and resettle in New Zealand where Eve later dies, aged 11.

Kaposi’s sarcoma (KS) — a relatively benign cancer that tends to occur in older people — becomes synonymous with AIDS in the early 1980s, so much so it is dubbed the ‘gay cancer’. “There was a story in the Sydney Morning Herald describing a ‘gay cancer’,” says Duffin. “We constructed a lot of hilarity about the notion that cancers had a sexual preference and dismissed the story as trash.”

AIDS patients begin to present themselves at St Vincent’s Hospital in Sydney and Prince Henry’s Hospital in Melbourne with purplish-black blotches on their skin. “People would put make-up on to try and hide the KS lesions on their face,” says Bloch. “It was very painful to see friends and patients change from looking well to rapidly going downhill, wasting away.”

Candlelight memorials become an integral part of honouring and remembering those who have died of the disease. The first is held in 1985 when two men stand silently with lit candles in Melbourne’s city square. In 1988, the Australian AIDS Memorial Quilt is established and publicly displayed for the first time on 1 December (designated World AIDS Day the year before).

“The establishment of these AIDS memorials served an important service,” says John Rule, editor of Through our Eyes — a publication charting Australia’s HIV response. “The stigma surrounding HIV/AIDS meant there was no formal recognition of HIV/AIDS as a national tragedy, nor were there moves to commemorate formally those who had died from the virus in a manner that often occurs following events such as natural disasters or wars.”

“In the annals of AIDS,” says Geoff Honnor, an HIV-positive gay man, “1996 will always be the ‘protease moment’ — the year that the advent of effective treatment for HIV was announced.” The extensive uptake of HAART in Australia — highly active antiretroviral therapy (a combination of drugs that include protease inhibitors), brings, for the first time, real hope that the worst is over. “I had begun my first triple treatment. The impact was immediate and extraordinary,” says Andrew Kirk, living with HIV since 1984. “The dream that I had wished for, so many years, had arrived.”

With the development of new, more effective treatments, rather than a terminal illness, HIV becomes a manageable condition and positive people find themselves living longer. “People with HIV weren’t meant to live this long,” says 72-year-old Barry McKay, diagnosed in 1988. “Now PLHIV are being put in aged-care homes!”

But ageing with HIV presents its own unique challenges with evidence suggesting many positive adults are ageing prematurely and developing multiple chronic illnesses typically seen in the very old — such as cardiovascular disease, kidney disease, cancer, diabetes, osteoporosis, and neurocognitive disorders. “Things accelerate and explode a bit with HIV,” says McKay.

At the height of the AIDS epidemic, gay men are routinely persecuted; the disease is coined the ‘Gay Plague’ — a term the press seize upon. A moral panic ensues and gay men are blamed for bringing AIDS upon themselves. AIDS is the “wrath of God”. GAY becomes an acronym for “Got AIDS yet?”

There emerges a clear distinction between innocent AIDS patients (those who medically acquire the disease) and the guilty — gay men. In 1984, Brisbane’s Daily Sun runs a story sympathising with a haemophiliac husband who transmitted HIV to his wife and unborn son. “What makes this case even sadder,” writes the author, “is that the mother and father are decent folk. They did not contract the disease through the kind of sexual lifestyle most people rightly avoid.”

Queensland babies
Four babies in Queensland die from contaminated blood transfusions in 1984. The tragedy heightens the fear of AIDS and inflames anti-gay rhetoric when it is discovered the blood donor is a gay man. The fact he did not know he had the virus (antibody testing for HIV isn’t introduced in Australia until 1985) does nothing to quell the antagonism.

The babies’ deaths lead, in March 1985, to Australia becoming one of the first countries in the world to adopt universal blood screening procedures for HIV. Gay men are automatically outlawed from donating blood.

The ’80s and ’90s see a series of high-profile AIDS-related deaths. Hollywood leading man Rock Hudson (pictured) is the first celebrity to publicly announce that he has AIDS shortly before succumbing to the disease in October 1985. Queen front man Freddie Mercury, pianist Liberace, Russian ballet dancer Rudolph Nureyev and Australian entertainer Peter Allen are also mourned by fans.

Silence = Death
Originating from ACT UP New York, ‘Silence = Death’ becomes internationally recognised as a popular slogan of the AIDS era. It protests both taboos around discussion of safe sex and the unwillingness of some to resist societal injustice and government indifference.

“Few people wanted to publicly admit that they were HIV-positive in such a hostile environment,” says Menadue. “People with the virus didn’t see themselves as having any particular rights or identity. We were a silent part of the epidemic until a few brave people started to speak up and change things.”

Today, effective treatment means HIV is no longer a death sentence. And studies show PLHIV who maintain an undetectable viral load present little risk of transmitting the virus onto a negative partner. “What we are seeing,” says Andrew Grulich, an epidemiologist who has worked in HIV research for more than 20 years, “is treatment as prevention (TasP) works.”

Unprotected sex
For more than 30 years, condoms remain at the forefront of Australia’s HIV prevention strategy. Recent studies, however, seem to suggest gay men have tired of the message. The Annual Report of Trends of Behaviour 2013 found that over the past decade the number of gay men having condomless sex in Australia has grown — especially among the under-25s. And results from Queensland’s Gay Community Periodic Survey released in March this year found 41 percent of men reporting condomless sex with casual hookups.Rather than complacency — as has been suggested — this trend perhaps reflects the variety of safe-sex options available to gay men today.

Much has been discovered about the human immunodeficiency virus over the past 30 years. Unfortunately, a medical cure remains a long way off. A ‘functional cure’, however — where HIV is suppressed to such an extent that it no longer warrants treatment — seems more likely. 

“A functional cure may be closer than thought, at least for some,” says Professor Sharon Lewin, one of Australia’s leading
HIV scientists. “Certainly, very early antiretroviral therapy (ART) can profoundly reduce the size of the viral reservoir, but much work is still needed to understand and eventually eliminate long-term reservoirs that persist on ART.”

Wonder drug
Various treatment developments (such as HAART and single-tablet regimens) have made headlines over the years. Today, all the talk is of Truvada. In trial after trial, when used as a pre-exposure prophylaxis (PrEP), Truvada proves to be highly effective in reducing the risk of transmission of HIV.

There are currently three Australian PrEP trials underway. If results echo trials overseas, Truvada as PrEP could be available here by April 2016 — if not before.

In July 2014, Melbourne hosts the 20th International AIDS Conference. With more than 16,000 delegates from 200 countries converging on the banks of the Yarra River, AIDS 2014 is the largest health conference ever held in Australia. At the conference a pledge is made — by every state and territory health minister — to eliminate all new HIV transmissions in Australia by the end of 2020.

Yearly diagnoses
The annual number of Australian HIV diagnoses peaks at more than 2,000 in 1987. After which, rates of infection begin to decline. And in 1999, Australia records its lowest annual number of HIV diagnoses since national notifications were introduced. Since then, year-on-year, HIV diagnoses have been gradually increasing. Today, they remain at a 20-year high with 1,236 cases recorded in 2013. By 31 December 2013, 35,287 cases of HIV have been diagnosed in Australia since 1982.

Otherwise known as AZT, zidovudine becomes the first HIV treatment available for use in Australia. “The promise of AZT was ultimately a let-down,” says Duffin. “At the doses used, it produced considerable side-effect problems and HIV was able to quickly develop resistance.”

With a plethora of drug regimens available, the HIV landscape today is vastly different to that of the ’80s. Thanks to the
development of effective ART, PLHIV are now living well and living longer with a life expectancy close to that of the general population. 

“Today, we actually have the scientific knowledge and potent, well-tolerated treatments to give us the opportunity to revolutionise treatment and prevention of HIV,” says Bill Whittaker — one of the architects of Australia’s response to AIDS. “We have made enormous progress. So much so, that the prospect of an AIDS-free generation is for the first time being contemplated.” An ambition simply unimaginable 30 years ago . . .