I thought about the implications: if James could develop AIDS, then it could happen to anyone at Steamworks. His behaviour was no different from any other gay man at the sauna. It was no different from what mine had been before I met Michael. We were all at risk. The new HIV antibody test had been available at the MCDC for three months now, but I still hadn’t plucked up courage to have the test myself. I realised that I might find KS spots on my own skin next morning in the shower – James’s diagnosis made this possibility real and immediate.
I trembled for the future. Was James just the first of many? Was my practice now to become an endless succession of gay men turning up with AIDS, just as James had done this morning? Was my lot going to be to provide a medical service for my patients as they gradually became weaker, and eventually died because their immune systems had shut down completely? What a grim outlook I was facing.
Inevitably, there were existential questions: Why was this happening now? Why gay men? Where would it all end? Would there ever be a cure? With my Christian fundamentalist background, an unwanted question came to mind. Was this, as American evangelists were claiming, a judgement on gay men from an angry God? Irritably, I dismissed the thought. AIDS was no more a judgement on gay men than was any other STI. AIDS, however terrible, was caused by a virus. The evidence for that fact now seemed beyond doubt. As such, the way was open for scientific research to find answers. Medical science would one day unravel this new viral infection and a treatment would be found. Somewhat cheered with that thought, I got up from my desk and went back to re-join the life of the busy clinic.
My worst fears were realised for my friend. James did not do well. His HIV antibody test was positive: his T cell count was low, around the 250 mark.10 As expected, the skin lesion I excised proved to be KS. Anne Mijch started interferon treatment and the KS responded for the first six months, but then new lesions began to appear. Anne tried a combination of radiotherapy and excision of the prominent skin lesions. But, the T cell count continued to fall and James lost more weight. He had to give up work and go on a disability pension. Although he managed a trip to Malta before he became really ill, his course was all downhill.
Michael and I did what we could for James. He often came home for meals. I remember he attended my forty-fourth birthday party in November 1985. He’d now resorted to wearing long-sleeved shirts and long trousers to hide the disfiguring purple spots, and he’d become quiet and withdrawn. I remember talking to him in our back garden that evening as the party went on inside.
‘I feel so hopeless, David,’ he said. ‘You and Dr Anne have been wonderfully kind, but I know you can’t really do anything more for me now.’
He broke down and cried as I held him there in the quiet of our backyard. I cried too because I knew he was right. With all the technology of modern medicine available to us, we doctors were powerless to cure him. We were unable even to slow down the course of the disease from which he was suffering.
A year later, James’s lower limbs became swollen and ulcerated because of the sheer number of KS lesions. The disease process had involved the lymph nodes in his groin so that lymphatic drainage from the legs was impeded, further adding to the swelling. He was soon bedridden and began to suffer a great deal of discomfort. By then, I had left the MCDC and had started in general practice, and I was his treating doctor at home until he died.
Eventually, James told his family about his sexuality and his diagnosis. His sister, with whom he had been very close, and his brother-in-law, were supportive and helped explain the situation to his devout parents. But, his sister had two small children and couldn’t provide a home for James. Thankfully, a very kind, somewhat older gay man – a good Catholic – opened his house, and undertook to care for James for the rest of his life.
Towards the end, members of the Catholic Church moved in to reclaim one of their own. Peter Hayes, a nurse from the MCDC, and nursing nuns provided home nursing care. Whenever I visited there was at least one nun praying at the bedside beside James, and I often ran into a young Catholic priest whom James’s gay friend had recruited to look after his spiritual needs.
Did ministrations of priest and nuns ease James’s passage out of this world and give him peace at the last? I cannot say, but I know James fought for life every inch of the way, with fearful desperation. Every time I visited there was always terrible dread etched on his once handsome face. I never saw anything approaching that horror with other AIDS patients. It was extraordinarily heart-wrenching.
On my last visit, James’s deathbed was like some medieval scene. Candles were burning, a priest knelt at the head of the bed, and there was a row of praying nuns down each side. Despite hefty doses of morphine, James was restless and unable to settle. On that last visit, Anne Mijch, a practising Catholic, attended with me. She, like all his friends, had fallen victim to his charm and didn’t want to lose contact with him completely after his discharge from Fairfield Hospital. We increased the dose of morphine, but there was little more we could do. As Anne and I left, she whispered to me, ‘If you are brought up from childhood to believe that God is a stern father figure, it’s no wonder you fight until your last breath to resist going to meet him.’
James died a few months short of his thirtieth birthday. On a bleak afternoon in mid-May 1987, I attended a thanksgiving mass for his life, held in a Catholic church in Hawthorn. There was the usual strange mix of gay men, awkward in their suits, and grieving, sometimes bemused family members – a scene that, over the next few years, would become so familiar at countless AIDS funerals. But, unlike many such funerals, James’s family, and the Catholic priest and nuns, made no attempt to gloss over the fact that James had died of AIDS. The printed Order of Service mentioned it several times, and we were led in prayer for people currently suffering from AIDS. James’s Maltese family seemed to accept – even welcome – the presence of his many gay friends. Towards the end they played a recording of one of James’s favourite songs from the musical Victor/Victoria:
Crazy world, full of crazy contradictions like a child
First you drive me wild and then you win my heart with
your wicked art,
One minute tender, gentle
Then temperamental as a summer storm,
Just when I believe your heart’s getting warmer,
You’re cold and you’re cool,
And I like a fool try to cope, try to hang on, try to hope.
Crazy world, every day the same old roller coaster ride, But I’ve got my pride,
I won’t give in, even though I know I’ll never win;
Oh how I love this crazy world.
I was asked to give the tribute at the end of the service. I remember saying that James was a man who represented ‘the best that Australia and Malta could produce’. It was a privilege to have been his doctor and his friend. Then, somewhat uncertainly, as my voice was breaking with sadness, I managed to read the first few stanzas of Dylan Thomas’s ‘Do not go gentle into that good night’. Many of James’s gay friends and lovers broke down and wept openly as I finished the reading.
* * *
3The meeting was arranged by the Australian Doctor’s Fund. My account is available today on the internet, from where I retrieved the above quote, under the heading AIDS and the Health Professional Summit Conference, 1989.
4This was providing there was a clear ‘window period’, with no risky exposures for three months before the test.
5Candidiasis, or ‘thrush’, is a fungal infection commonly occurring in the vagina of reproductive women and in the mouths of infants. In adults, persistent candidiasis in the mouth is often indicative of an impaired immune system.
6PCP = Pneumocystis carinii pneumonia, the commonest opportunistic infection occurring in patients with AIDS in Western countries.
7This is the typical appearance of oral thrush (candidiasis).
8Kaposi’s sarcoma (KS) before 1980 was a rare cancer. After 1980, it began to appear commonly as an aggressive
cancer in gay men when they had developed the immune deficiency associated with HIV infection. In 1994 it was discovered that KS was directly caused by a sexually transmitted virus – the human herpes virus 8 (HHV8). Thus HHV8 became another opportunistic infection associated with HIV and one that led to the development of KS.
9Dr Robert Gallo had recently developed the human T cell lymphotropic virus-III (HTLV-III) antibody test in the USA. Later it was renamed the HIV antibody test. In late 1984, the Fairfield Hospital Virology Department developed its own in-house test and we were able to send blood from the MCDC for testing. A positive HIV antibody test indicates the presence of HIV infection.
10T cell count was the colloquial term for the T4 helper cell count (now referred to as the CD4 count). T4 helper (CD4) cells play a vital role in cellular immunity. The T cell count is a test of immune function. A fall in the T4 helper cell count indicates immune deficiency. In the healthy adult there should be more than 500 T4 helper (CD4) cells per ml of blood. Throughout this text, for simplicity, I will simply call this test the T cell count.
Chapter Ten
The Queensland Babies
Although it was not as bad as in some countries, there was undoubtedly an ongoing hostility in Australia towards gay men, brought about by AIDS and the publicity surrounding the condition. This was given expression in the tabloid press, but was also displayed in the general community at large, and in small sections of the medical, dental and nursing professions. In some Australian States, most notably NSW, homosexual behaviour was still illegal. It was unclear in those early years just what form a concerted response from public health authorities might take; there was wild talk in the popular press about ‘quarantining all gay men’. There was ample cause for gay men to feel paranoid and under threat.
At the end of 1984, things became worse. There was high drama about AIDS, fanned by media sensationalism. In November, on the eve of a Federal election, the media reported that four babies in Queensland had died of AIDS after receiving blood from a single (gay) blood donor. In response, the Federal Minister for Health, Neal Blewett, called an emergency meeting of state health ministers. They agreed upon a set of measures to control the spread of the virus:
•Blood donor exclusion guidelines – no longer could anyone in a high risk group for AIDS donate blood.
•Provision of Commonwealth funding immediately for development of standardised blood tests for HIV infection (the HIV antibody test) in one specified laboratory in each state and territory, so that blood donors and people at risk of AIDS could be screened and tested.
•Upgrading the existing NH&MRC Working Group on AIDS to a National AIDS Task Force. The Task Force would still be chaired by Professor David Penington, but would now report directly to the minister.
•The establishment of a new, widely representative National Advisory Committee on AIDS (NACAIDS), chaired by media personality Ita Buttrose. NACAIDS would include medical and legal experts, representatives of the gay community from State AIDS Councils, representatives of the Haemophilia Foundation, sex worker support groups, drug user organisations, unions, and health consumer groups.
There were calls, in some quarters, to shut down gay saunas or bathhouses. This measure had been put into effect in San Francisco and New York City. Opponents of closure, like the outspoken gay man Bobby Campbell in San Francisco, argued that there was little logic to the idea. We knew by now that it was unprotected anal sex that led to spread of HIV among gay men, not the presence or absence of bathhouses. Besides, public health authorities could target bathhouses for disseminating preventive health messages. They were popular and gay men spent many hours there, so their clients were potentially a captive audience.
I was strongly opposed to the idea of bathhouse closure, as was the Victorian AIDS Council. I knew gay saunas and Club 80 (a sex club) in Melbourne were popular, and that they provided safe meeting places for gay and bisexual men. The management of the largest, most well patronised establishments – Steamworks and Club 80 – had proved accommodating right from my earliest contact with them. They had allowed safe-sex posters to be displayed prominently, and for condoms and water soluble lube to be freely available. With the backing of my boss, Dr Graham Rouch, Deputy Director of Public Health, I publicly supported the VAC’s stance. I am quoted in the earliest book for the general public about AIDS in Australia, where I give my opinion on what would happen if gay saunas were shut down:
If gay men were obliged to take to the parks and toilets, the opportunity for doctors and health educators to get their message across in those circumstances is virtually impossible.11
In my opinion, the shutting of gay saunas was one of those measures dear to the hearts of politicians – not necessarily an effective action, but one that made it appear as though something was being done.
Despite the media frenzy after the Queensland babies dying of AIDS, in general, public health officials in Australia adopted a restrained and common-sense approach to the unfolding epidemic. Gay saunas and other sex-on-premises venues were not closed down, on the condition that management and staff were willing to co-operate with public health authorities.
With the new knowledge that AIDS was due to the virus HIV, and the development of the HIV antibody test, the picture was becoming confused. People, and especially some sections of the media, had difficulty grasping the difference between AIDS and HIV infection. Liang’s case might help illustrate the true situation.
Liang Receives a Positive HIV Antibody Test at Steamworks
A holiday in Melbourne on a tourist visa came as a breath of fresh air to Liang, a young Chinese man from Kuala Lumpur. He enjoyed his stay so much that, when his visa expired, he just never went back to Malaysia. Instead he simply disappeared into the ambience of Melbourne’s gay scene, and particularly into the embrace of a series of older gay men who liked young Asian men. He managed to obtain work at a factory in North Fitzroy that didn’t ask questions about valid visas, but paid a very poor wage for the privilege of keeping their eyes closed and their mouths shut. Liang was not the only undocumented worker employed there.
Michael and I first met Liang one Wednesday evening at Steamworks in late 1986, not long before I resigned my position at the MCDC. He was a slim, shy, and very eager-to-please man about twenty-two years old. There was an air of boyish innocence about him that was endearing. He was not unwell and had no symptoms of any STIs, but he came into the office at Steamworks and asked for blood tests ‘for everything’. After education and counselling, Liang was still adamant that he wanted an HIV antibody test included. Two weeks later he returned for the results, and I had to tell him that he was HIV positive. He looked a bit stunned, but took the news well. He was pleased when I made arrangements for him to come into the MCDC the following week for a full sexual health check-up, so that we could reconfirm his HIV test with a second blood sample, and get his T cell count done.
Liang was confirmed to have HIV infection, as a second blood test was HIV antibody positive. His T cell count was depressed at 320, so there was evidence of some immune deficiency, although he had no symptoms or signs of illness. At this early stage, he did not have AIDS and he was keen to do whatever he could to maintain his health. I gave him advice about nutritious diet and healthy lifestyle, advised him to make sure he only had safer sex, and suggested he should attend the clinic once every three months for regular T cell count testing. We seemed to have established good rapport, so I told him I was leaving the MCDC in the near future but he would be very welcome to come and see me at my new private practice in Carlton, in the New Year, if he would like.
When Liang came to see me at Carlton early the following year he had no money to speak of and, of course, did not have a Medicare card, but he insisted on paying for his consultation. So he could save face, I told him I would charge him ten dollars per visit. Any pathology he might need I would arrange to be done through the MCDC, so it would cost him nothing. I knew this was an unsatisfactory arrangement for the long-
term, because it depended on the good-will of the staff at the MCDC. It also depended on me personally taking his blood samples across to the MCDC at lunchtime – thirty or forty minutes I could ill afford out of my busy day.
Liang remained well, although his T cell count slowly declined. Late the following year, an AZT clinical trial started at Fairfield.12 The trial was for people like Liang with HIV infection and a T cell count between 200 and 500, but who were otherwise well.13 I arranged to see Liang at one of my weekly outpatient clinics at Fairfield and enrolled him into the AZT trial. He must have been randomly assigned to AZT rather than a placebo, because he did very well almost immediately and his T cell count stopped declining. He was absolutely religious in taking his tablets on time and followed the requirements of the trial protocol to the letter. The clinic at Fairfield was convenient for him, too, as he lived in a rooming house in Clifton Hill not far away. He put on weight, felt stronger, looked healthier and became very cheerful and enormously grateful to me and the Fairfield staff. He was so boyish and lovable that a few of the older outpatient nursing sisters fussed over him tremendously.
He continued on the trial for more than a year – until the axe fell. Officials from the Immigration Department visited the dodgy factory in North Fitzroy one afternoon and rounded up the undocumented workers. I first heard of it when one of Liang’s older gentleman friends came to see me at the clinic in Carlton and told me, with tears in his eyes, that Liang was locked up in the Maribyrnong Immigration Detention Centre and was due to be deported back to Malaysia in three days’ time.
Tell Me I'm Okay Page 12
