A new era dawns

I’m different and the organisation is different. We’ve both been through some strange and unpredictable times. But we are both stronger. Perhaps what we are both learning, and I think learning well, is how to deal with an epidemic without the prop of a crisis.32

These are the words of Marcus O’Donnell, one of the organisation’s earliest education officers, reflecting in 1999 on the previous four years. In the aftermath of the review, while the VAC/GMHC was tentatively rebuilding and reviving itself, a scientist working in the United States, David Ho, had a breakthrough in HIV/AIDS research. Ho presented a paper at the Vancouver World AIDS Conference in 1996 on the effects of protease inhibitors and HAART (Highly Active Anti-Retroviral Therapy), suggesting that the combination of protease inhibitors with other HIV medication would be more effective in combating the virus. Kevin Guiney was at the conference and remembers, ‘they thought it was the Lazarus moment … David Ho thought they’d be able to eradicate HIV’.33 ‘There was an atmosphere of palpable excitement’, wrote Tony Maynard, VAC/GMHC Treatments Officer, in 1999, ‘as news spread of the reports of suppressing HIV viral replication to “undetectable” levels using three or more drugs in combination. Was a cure at hand?’34 Certainly everyone wanted to believe this was the case.

Thanks to the pioneering advocacy of ACT UP, along with PLWHA Victoria and the VAC/GMHC, the Baume Review released in 1991 ensured that even if drugs that were approved and available overseas were not yet approved in Australia, doctors could recommend their patients get special access to those drugs in cases of very serious and terminal illnesses. Many people living with HIV/AIDS in Australia took advantage of this and were able to begin the new combination therapy almost straight away. David Menadue was one of the first people to start on this new form of treatment.

We were able to bring them in on special access, and I was one of the first people to start on a protease inhibitor, it was a drug called Saquinavir. I remember the moment as almost a turning point in my life – it’s hard to believe a drug would give you that – I took it. And for the first month I was like, my body was saying thank you, this is magic, but it made me manic too. We started calling it ‘Princess Saquinavir’ because it made us feel like princesses. I would be up at one or two in the morning and you’d be ironing, or you’d go out and do some gardening, and people would think we’d all gone mad but in fact we’d gone mad in a positive way. Because our body was responding to the fact that there was less virus circulating; in fact within about six months you could see people putting weight back on. You could see people going back to the gym. You could see people going back to work. And this was just too miraculous for words. We called it the ‘Lazarus Syndrome’, of course it is. So for me that was a kind of glorious moment.

David Menadue, interviewed 2012

The effects of these new combination therapies on the people taking the drugs, as well as those in the gay and HIV/AIDS communities, were life-changing. David Ho’s original hypothesis was that through mathematical modelling and the multiple combinations of drugs, a suppression of viral replication would eventually lead to the eradication of HIV; permanently. As a result, wrote Tony Maynard, ‘people were prepared to tolerate unwieldy combinations of drugs that would completely suppress HIV replication to undetectable levels for about three years, if in the end eradication was possible’.35

A few short years later, however, the miracle treatment was taking its toll and revealing complexities initially unimagined. The drug regime was complex and demanding, with some people having to manage as many as 30 or more pills in one day. In addition, many of the drug combinations stopped working after a while and new combinations had to be tried. Alternative combinations, however, had to be carefully considered against the numbers of possible future combinations, should they continue to fail. The physical side effects were also difficult to cope with, including wasting or accumulation of fat, as well as high cholesterol and blood sugar levels. David Menadue was not alone in his encounter with this new drug routine, with many others enduring similar experiences:

The number of tablets we had to take and the many times we had to take them meant that we spent more of our day preoccupied with remembering to take pills. The Saquinavir regimen involved taking eighteen pills a day, on top of the other antivirals and the prophylactic drugs. My total pill count for the day was 34 and they had to be taken at different times of the day. When the Saquinavir stopped being effective for me, after about six months, I was placed on a new protease called Indinavir, which had the added complication of having to be taken on an empty stomach twice a day. Including pills I had to take with food, I was now taking pills five times a day and had to stop and start my eating to accommodate this routine.36

For many people living with HIV/AIDS this was a punishing routine and one that took great dedication to maintain. Treatment Officers at the VAC/GMHC reported an increase in people wanting to take a ‘drug holiday’ in order to give their bodies a break from the harsh side effects.

There were also dramatic psychological outcomes of the breakthrough new treatment. After years of fighting the disease, many people who had HIV/AIDS were simply exhausted and while it seemed like a miracle discovery to the wider community, the demanding new regimen meant that many just did not have the energy or stamina to continue with it. For others, it was a psychological uphill battle to adjust to the possibility that HIV/AIDS might no longer be a death sentence. Bill O’Loughlin recalls this experience:

Interestingly, I went on antiretrovirals in about 1996/7, and even though intellectually I knew that these were supposed to protect my health … it took me years, even after I’d been on HIV medicine, to begin to adjust to having a normal life. Whereas I’d been treated differently all that time before, and suddenly it was like, well now you get on with your life, and I didn’t know how to.37

By 1999, the VAC/GMHC reported that 30 per cent of people on the new treatment were onto their last available combination.38 The question of whether HIV would become a chronic, manageable disease was still unanswerable. However, the positive impact of combination therapies cannot be overstated. They provided a life and a future where previously there had been uncertainty and fear. It was an exciting and life-changing development, but one that came with many strings attached.

Continuing Care Unit

Despite the much-improved health of PLWHAs, high quality palliative and respite care was still needed. Although at the time of the closure of Fairfield Hospital, The Alfred Hospital made a commitment to building a new Continuing Care Unit (CCU) for PLWHAs, and despite a $2.4 million grant from the Department of Human Services being allocated to the new building, there were continual delays in its construction. In the meantime, those requiring care were accommodated at The Alfred’s Ward 3A, which an independent review described as ‘unsatisfactory and substandard’. The VAC/GMHC was particularly passionate about this issue, as the lack of a fully functioning CCU not only increased the pressure on the organisation’s already strained resources, but also ‘meant grossly inadequate facilities for people living with and dying from HIV/AIDS’.39 Through intensive lobbying by the VAC/GMHC in collaboration with other health and community groups, construction finally began in December 1999 and The Alfred agreed to provide patients with improved care arrangements until the CCU was completed. The new Continuing Care Unit, named Fairfield House, was opened by Victorian Health Minister John Thwaites on 19 November 2000, four years after the closure of Fairfield Hospital.40


References


Clinical staff Frocktails

Staff at the annual Christmas party, Frocktails, in 1996.

Bernard Gardiner

David Menadue undergoing treatment

David Menadue undergoing treatment at Fairfield Hospital in 1993, just before the arrival of anti-retroviral treatments.

Photograph by Mathias Heng. State Library of Victoria, H95.190/8

Protest for Fairfield House CCU

A protest over Fairfield House Continuing Care Unit (CCU) at The Alfred in November 2001. From left: Rob Knowles, MP; Barry McKay; John Daye, President PLWHA; Mark Riley, President VAC; and David Menadue, Vice President PLWHA.

Living Positive Victoria