For two decades AIDS became my life; not just my professional life, but my personal life. In a drawer of my desk I have a diary. It’s a cheap paperback edition for 1993. Within its pages, in mid-1993, I recorded the names of all the patients I cared for who died during the first decade of AIDS. The number came to over 200. Inevitably, there were more that I had forgotten. Sadly, some of those whose names I recorded in 1993 have become nothing more than names to me now, because I can no longer picture their faces. But I do remember well those who were friends, those who were colleagues, and those whose fight against AIDS particularly inspired me.
The first news of the HIV tsunami which was to engulf Melbourne’s gay community and sweep away many of my patients, friends and colleagues, reached me in 1981, not in the pages of a medical journal, but in the form of a patient. A real smart arse, he arrived in my consulting room and asked to be checked ‘for everything, Doc – including the gay cancer and the gay pneumonia, please’.
He was very young – maybe twenty-two – and just back from a holiday in New York City where he’d done, as he expressed it graphically, ‘a lot of fucking around’.
I had been a little puzzled by his request, so I told him I wasn’t aware of any gay cancer or pneumonia, and that we had no tests for anything except the usual STIs. He’d looked at me pityingly and said, ‘You don’t know about it, Doc? Fuck! Everyone’s talking about it in New York. They say it’s from too much gay sex, too much amyl, and too much fisting. Some guys are shit-scared and have even stopped having sex.’
I remarked drily that it didn’t seem to have affected his behaviour much.
‘I don’t scare easy, Doc. And besides, you know the Yanks – always exaggerating things.’
Two or three weeks later an envelope containing a photocopy of the MMWR (Morbidity and Mortality Weekly Report) of 3 July 1981, produced by the Centers for Disease Control (CDC) in Atlanta, Georgia, arrived on my desk. One of the Public Health doctors in the Head Office of the Health Commission of Victoria (HCV) had kindly sent it, and he’d written an accompanying note: ‘Not sure how significant this might be, but thought you ought to be aware’.
The article described the first cases of what was later to be known as the Acquired Immune Deficiency Syndrome (AIDS). All the cases were homosexual men, so my smart-arsed patient wasn’t lying – something strange was going on in the United States. As Chief Venereologist for Victoria, it was clearly something I needed to be aware of.
Rumours were rife over the next twelve months. The gay grapevine is better than most. On Wednesday nights, during our syphilis blood testing sessions at Steamworks, people were increasingly asking about the gay cancer (or as it was being called in the US press: GRID ‘gay related immune deficiency’). A young immunology scientist, Ian Goller, was a regular at Steamworks on Wednesday evenings and always dropped in to the office for a chat. He was planning a year of further study in San Francisco. I remember our rather sombre discussion on the eve of his departure for the West Coast in 1982. Ian, resplendent in a jock strap – his invariable form of dress at Steamworks – made me a promise: ‘David, I’ll send you everything I can find.’
He was true to his word and over the next two years deluged me with AIDS-related pamphlets, newspaper cuttings from both gay and mainstream press, handouts he’d picked up on Castro Street in the gay quarter of San Francisco, and photocopies from medical journals. I still have some of them, and some are quite historic, like Larry Kramer’s front page article in the New York Native of March 14–27 1983:
1,112 and counting:
If this article doesn’t scare the shit out of you, we’re in real trouble. If this article doesn’t rouse you to anger, fury, rage and action, gay men may have no future on this earth … I repeat: our continued existence as gay men upon the face of this earth is at stake. Unless we fight for our lives, we shall die. In all the history of homosexuality we have never been so close to death and extinction before. Many of us are dying or dead already.
I perused Ian Goller’s scary missives from San Francisco with mounting disquiet. Sporadically, then more regularly, I came across ‘shock reports’ of ‘a gay plague from America’ in the Australian press. As Chief Venereologist for Victoria, I felt a heavy load of responsibility. This worrying thing was about to happen on my watch. If the gay community in America could be severely affected by the disease, the same could happen in Australia. Already, it might be taking an insidious hold on my gay patients, especially those who had been sexually active in the United States. The condition clearly was linked to sexual behaviour, and especially homosexual activity. Something needed to be done. It was one thing to feel something ought to be done, but in the face of considerable uncertainty among American researchers and clinicians, it was quite another to know what one should do.
One morning I had an unexpected phone call that offered assistance. A clipped, professional voice stated, ‘David Jose here. I’m an immunologist at Peter MacCallum Cancer Institute across the road from your clinic. I imagine you have quite a few ‘gay guys’ attending that centre of yours?’
I told him that he imagined correctly.
‘You may not be aware but there’s some rather surprising immunological findings coming out of the United States at the moment.’
Yes, of this I was all too well aware. Then a noticeable softening took place in the rather high-handed approach he’d taken thus far, ‘Oh good! Glad I don’t have to explain myself too much then. Perhaps we should meet for coffee in our cafeteria?’
I murmured, ‘I’d be only too glad to do so.’
The next morning I crossed Little Lonsdale Street and made my way to the staff cafeteria in Peter MacCallum Hospital.
David Jose was a pleasant fellow – intellectual, scientifically oriented – and curiously lacking in any prejudice towards the affected community, whom he constantly referred to as ‘gay guys’. He was keen to do an informal, pilot study. There was no specific test for AIDS itself, but immunological blood tests – T cell counts estimating the numbers of T4 (helper) and T8 (suppressor) cells in a sample of blood – could allow a diagnosis of immune deficiency if the T4 cell count was reduced. Such tests could be done at the Peter Mac laboratory, but they were expensive. We would need a grant and a formal study to access those. But David had an alternative idea.
There was a relatively inexpensive skin test that gave an indication of cellular immune function. He had one to show me – he pulled a rather ungainly-looking plastic device out of the pocket of his white coat. There were nine round cups with little spikes projecting from each. The little spikes were impregnated with various powerful antigens (including tuberculin as used in a Mantoux test) and the nine cups were pressed onto the skin of the inside of a patient’s forearm. You traced around the little circles with an indelible pen, asked the patient to come back in three days and read the result by gauging the degree of redness, swelling and hardness (or ‘induration’ to use the correct medical term) in each of the little circles marked out on the skin. Patients with normal immune function would have a marked response to a number of the individual antigens, while patients with significant immune deficiency often produced very little response to any of them. David asked:
‘How would you feel, and how do you think your ‘gay guys’ would feel about this skin test?’
I was very interested, particularly when David said he could supply the clinic with a number of these test devices for free – between fifty and one hundred, he thought. My staff and I would learn how to administer the test and we would record for David each participant’s response after three days. As a control, we would do some testing on volunteer heterosexual men as well.
For a period of six months beginning in late 1982 we carried out immunological skin testing at the clinic. The results were disquieting. More than a quarter of gay patients who agreed to be tested showed evidence of poor response to the skin tests, while heterosexual men almost uniformly had normal responses. David Jose was impressed.
/> The Black Plague of the Eighties
During this time, news arrived that the condition had reached our shores. The first patient with AIDS was diagnosed in Sydney in October 1982. He was a resident of the USA on holidays in Australia and was treated by Ron Penny, Professor of Immunology at St Vincent’s Hospital. Then, in July 1983, the first Melbourne patient, a local Australian man, was diagnosed and subsequently died of AIDS in Prince Henry’s Hospital. A slow but steady increase in AIDS diagnoses followed. The Medical Journal of Australia published several preliminary Australian case reports on 11 June 1983. The educational effect of these sober, scientific and factual case reports was offset by the sensationalist black cover of that edition of the journal. It depicted the chest X-ray of a patient with pneumonia and a skull above, with the glaring headline:
‘The black plague of the eighties’, and the caption: ‘Perhaps we’ve needed a situation like this to show us what we have known all along – depravity kills!’
Those years 1982 through to 1985 were troubling years for doctors dealing daily with gay men. The threat of AIDS was increasingly known. For any thinking gay man, the news from the USA was upsetting. Worry and anxiety were common and readily understandable. We gay doctors in Melbourne were worried enough ourselves, even though at the time we only rarely saw seriously unwell patients. But, we knew that our colleagues in Sydney, where the epidemic seemed to be a little more advanced, were diagnosing increasing numbers of cases. In Melbourne, it was rather like living through the early days of World War II in Britain – the so called ‘phoney war’. There was a major public health threat looming and we expected that eventually there would be significant numbers of cases. But, our numbers of AIDS cases in Melbourne remained small. None of us were certain what preventive action should be taken, as we did not know what the basic cause of the problem was. There were many rival theories. Excessive use of amyl nitrite,1 ingestion of foreign semen either orally or anally, or multiple sexually transmitted infections and/or bowel infections leading to ‘immune overload’ were all touted as possible causes of the severely damaged immune system characteristic of AIDS.
As the months passed, it gradually became clear that AIDS was not confined to gay men. Intravenous drug users, some people who had received blood transfusions, some heterosexuals (Haitians in particular), and people with haemophilia who had received Factor VIII transfusions, were reported to be developing AIDS in the United States. These facts suggested that the causative agent was a virus with similar transmission pathways to the hepatitis B virus (i.e. transmitted by sex and by blood).
In 1983, the National Health and Medical Research Council (NHMRC) established an Australian working group on AIDS under the Chairmanship of Professor David Penington, influential Dean of the Melbourne Medical School. The Working Group was composed entirely of doctors and medical scientists. Around the same time, the HCV, alarmed at the first death from AIDS having occurred in Melbourne, set up a State Ministerial Advisory Committee on AIDS, chaired by Professor Ian Mackay, an immunologist from the Walter and Eliza Hall Institute of Medical Research. This Committee too was made up mainly of doctors. As Director of the Melbourne Communicable Diseases Centre and Chief Venereologist for Victoria, I was invited to join the committee. We met monthly and at first the meetings were exceedingly boring. We knew so little. We discussed the latest medical and scientific reports from the USA, and information we were receiving regularly from some Sydney researchers. We provided what advice we could to the Health Minister as to how he should respond to letters flooding in to the Health Commission from interested organisations, concerned doctors, and the general public. We debated over and over the possible causes of AIDS. One elderly member of the Committee invariably went to sleep and snored gently in the corner. Despite the gravity of the public health risk we faced, we all felt considerable empathy with him.
In mid-1983, four gay men, including Phil Carswell, a school teacher, convened a meeting to try to address the increasing concerns of gay men in Melbourne. It was held one evening in the public auditorium of the Royal Dental Hospital, and the organisers had invited several members from the medical community to form a panel: a gay psychologist, recently returned from sabbatical in California; four gay general practitioners; Ian Fraser, a medical registrar from the Royal Melbourne Hospital assigned to the AIDS Outpatient Clinic2; and me. We were each invited to give a short presentation on what we knew about AIDS, its transmission routes, its prevention, and how we thought this new threat would affect the gay community in Australia. The auditorium was packed with gay men and lesbians. There were people sitting in the aisles and standing at the back. After the presentations, the meeting was thrown open to questions from the floor, most of which were unanswerable. Of course, the commonest recurring question was, ‘How can you avoid getting AIDS?’
In July 1983 we didn’t know for sure. The best answers we could come up with were to reduce your number of sex partners, and avoid having sex with Americans. For good measure we threw in that it was probably wise to avoid using amyl nitrite as a sex stimulant.
Despite the unsatisfactory nature of the factual information, the meeting was fruitful in that the community decided immediate action was required. The doctors on stage played no part in this decision, although we were all supportive. It was left to Alison Thorne, a well-known lesbian and gay activist, to issue an impassioned, rallying cry from the floor. A few days later in The Laird, a gay pub in Abbotsford, the Victorian AIDS Action Committee (which later became the Victorian AIDS Council (VAC)) was formed. Phil Carswell was elected the first president. From its inception, the Melbourne gay community gave a mandate to the VAC. Consequently, the VAC was able to speak with authority and to act on behalf of gay men. Gay men generally listened to what the VAC had to say. The organisation became widely respected throughout the gay and lesbian community and, over time, received grudging recognition within government agencies.
At the time, the Melbourne gay community was well served with a quality monthly magazine called Outrage. Adam Carr, a young gay journalist, was on the editorial staff and wrote regularly for the magazine. He had an incisive mind and took it upon himself to investigate AIDS. Adam had no medical background, but he was prepared to read widely and to interview doctors, medical researchers, public health officials and others, to gain as much knowledge as he could. Several times he interviewed me. I found his questioning direct and well-informed. Adam reflected his newfound knowledge in a series of regular articles in Outrage. In clear, non-sensational fashion he laid out the little that was known, what was suspected, the situation in America, preventive measures that could be taken, and practical things Melbourne gay men should be doing in the face of the impending AIDS epidemic. He also discussed the back-lash against the gay community that might be caused by AIDS. As soon as condoms were recognised as valid preventive measures, Adam advised condom use, and urged gay men to adhere to safer sex practices. His articles led to many Melbourne gay men avoiding infection. I believe his journalism saved lives.
After the Victorian state government’s Ministerial Advisory Committee had been meeting for a few months, a delegation from the new Victorian AIDS Action Committee arranged a meeting with Tom Roper, Victorian Minister for Health, and presented their case for a representative of VAAC to sit on the Advisory Committee. At first the minister refused this request, instead proposing the formation of a ‘liaison committee’. He decreed that three delegates of the gay community could meet with three designated members of his Advisory Committee at the end of each meeting. The Chairman Ian Mackay, Fairfield virologist Ian Gust and I were the selected individuals who would meet the gay delegation. I found that the liaison committee meeting was always more taxing than the main meeting. The gay men wanted to know the full content of our discussions in great detail, and posed tough questions that we had to take back to the next committee meeting. Everyone soon realised that this situation was ridiculous and unsustainable.
After eighteen months, the chairman man
aged to persuade the minister that a representative from the VAC should be given a place on the Advisory Committee. In all subsequent HIV/AIDS advisory committees in Victoria, gay men (and soon HIV positive people) took their rightful places as representatives of the main affected communities.
It is difficult at this distance in time to appreciate what a radical step this was. It was a huge triumph for consumer input and represent-ation in public health. It soon became standard practice that representatives of affected communities (gay men, people living with HIV, intravenous drug users, people with haemophilia, and sex workers) were included on State and Federal government AIDS advisory committees. Many old-school public health doctors distrusted this new approach to an infectious disease. They much preferred the traditional public health paradigm of mandatory testing, isolation, or quarantine of affected individuals, with rigorous case finding and follow-up of known contacts. Their view, which they argued strongly, was that ministers and politicians should take advice solely from doctors and medical scientists.
It was a major step forward when in late 1983 to early 1984, a virus was discovered to be the cause of AIDS. The virus had a number of names at first, depending on which laboratory (French or American) had isolated it, but it was the same virus, later called the human immunodeficiency virus (HIV). Clinicians no longer had to contend with crazy, rival theories of possible cause. Knowing that a virus was responsible meant researchers had something definite to work on. They could discover precisely how the virus was transmitted, could develop blood tests for its detection, could test drugs likely to destroy it, and might even be able to develop a vaccine against it. In fact, a useful and relatively inexpensive blood test for detecting HIV infection became available very quickly in research laboratories in the USA in early 1984. The test looked for antibodies to HIV in the blood stream of an infected patient. A workable theory about HIV and AIDS was then developed, a theory that has been proven to be fact over ensuing years. A person becomes infected with HIV, either through sex, or through blood contact, with an already infected human being. Their body responds by developing antibodies which unfortunately do not have any protective function, but can be detected with a blood test. The virus, HIV, targets specific white cells, the T4 helper cells (nowadays called CD4 cells), which happen to be absolutely vital to the body’s immune function. Over time, usually several years, the body’s T helper cells become depleted, and so the infected person gradually becomes immune deficient. At a certain point, usually when the number of T helper cells in the body drops below half the lower limit of normal, the HIV infected person becomes prone to one of a long list of possible infections (so-called opportunistic infections or OIs), or some specific cancers that can take advantage of the damaged immune system. When this happens the HIV infected person can be said to have developed AIDS.
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