Medical Responses to AIDS
By late 1984, it was felt that medical expertise on AIDS should be concentrated in just a couple of designated hospitals. The Victorian government decided to provide inpatient facilities for AIDS patients at the Royal Melbourne Hospital (RMH) and at Fairfield Infectious Diseases Hospital (Fairfield). The government also established three outpatient clinics for patients with AIDS-related conditions (ARC) or patients who thought they might be at risk of AIDS. These were at the RMH, Fairfield and the MCDC.
The MCDC by then had become extremely busy. To create more space, the HCV refurbished a large store room at the back of the Little Lonsdale Street building, converting it into the AIDS Referral Clinic. Once people became familiar with the new clinic, in order to reduce stigma we dropped ‘AIDS’ from the name. In addition, the HCV provided funding for a part-time medical officer position, and a full time nurse/counsellor position to service the clinic. Peter Hayes was the successful applicant for the latter position.
The Minister for Health, David White, came to the MCDC early one evening in April 1985 to open the referral clinic officially – the first minister in living memory to cross the threshold. He didn’t stay long, but the very fact that he was there sent a strong signal that the government was doing something about AIDS. The minister’s visit was a considerable morale booster for my staff. We remembered that back in 1981, when asked a question about the MCDC on the floor of parliament, the then Minister for Health was unaware that his Health Department even had a public clinic for STIs in Melbourne!
The government provided funding so that both HIV antibody testing, currently being trialled at the Virology laboratory at Fairfield, and the expensive T cell testing could be done on blood samples from outpatient clinic patients who were deemed at risk of AIDS or ARC, thus allowing accurate assessment of their HIV status and their immune function. We no longer had to depend on David Jose’s skin tests.
From the day it opened, the newly-created AIDS Clinic at the MCDC was well utilised. Anxious gay men fronted up for HIV antibody testing, and, if found to be HIV positive, for immune function testing. They also sought counselling from Tom Carter and Beth Hatch, our contact tracer/counsellors, and from Peter Hayes our new AIDS Clinic nurse, who had had eight years’ previous experience in community nursing with the Geelong and District Nursing Society. It is a notable fact that, at the time of writing, Peter still continues as a counsellor supporting clients at the Melbourne Sexual Health Centre in Carlton. Counselling patients who were entirely well, but had a positive HIV antibody test, was extremely difficult for doctors and counsellors, not to mention the poor patient himself, because we were all uncertain at the time exactly what this meant in the long term.
* * *
1Amyl nitrite and other chemically similar nitrites were available in little bottles, over-the-counter, in sex shops. Sniffing or inhalation of these chemicals caused dilatation of small blood vessels throughout the body and resulted in a short-lived ‘high’ during sexual intercourse. They were especially popular with gay men because the chemicals also caused relaxation of the anal sphincter muscles making anal intercourse easier for the receiving partner.
2Ian was later to distinguish himself as the inventor of the vaccine against the human papilloma virus and as an Australian of the Year.
Chapter Nine
The HIV Antibody Test and Its Controversies
Late in 1984, following work in the United States that paved the way, the virology laboratory at Fairfield Hospital, under its director, Dr Ian Gust, developed an ‘in-house’ test which allowed blood to be tested for the presence of HIV antibodies. A positive test meant a patient had been infected with HIV. A standardised test was not likely throughout Australia for several months (and in fact wasn’t widely available until mid-1985), but at that earlier stage Ian Gust wanted to test blood from as many at-risk patients as possible. I was keen to help him, but in my enthusiasm for this medical advance, I did not think through all the implications of the test as carefully as I should have done. This point is best illustrated by recounting here part of a presentation I made at a meeting in Sydney in 1989:
In September/October 1984 when Fairfield Hospital’s Virology Laboratory first developed its own HIV antibody test, I was asked as Director of the Melbourne Communicable Diseases Centre (the Sexually Transmitted Disease Clinic) to allow blood drawn from homosexual men for syphilis or Hepatitis B serology to be also tested for HIV antibodies. I agreed to this, so for about one month every ‘gay’ specimen of blood was tested (without the patient’s knowledge). A few weeks later I was presented with the names of about ten individuals whose blood had tested unequivocally positive. I was placed in a quandary, but finally decided that it was my duty to inform those patients. I did this personally (with the backup of the Clinic’s trained counsellors), because I believed, as it had been my decision, I should take the responsibility. I have had few more salutary experiences in my professional life, because I learnt first hand exactly what having an HIV antibody test means to a patient, and exactly what implications a positive result carries with it. I also learned that testing without prior counselling and consent is at best poor medical practice, and at worst a considerable and unjustifiable infringement of a patient’s rights.’3
I remember some of the patients found positive as a result of this ‘experiment’ needed ongoing counselling for many months. One patient, whom I saw years later with an AIDS diagnosis, told me that being tested without his knowledge or consent was one of the most confronting things that had ever happened to him in his life.
After that costly mistake, I realised that my staff and I had to develop a firm policy on HIV antibody testing. We had to think through the advantages and disadvantages of the test for a patient. If a test was negative, the major advantage for that patient was the knowledge that he was not infected with the virus responsible for AIDS.4 We could then educate and counsel him about avoiding infection in the future. ‘Use condoms, reduce your number of sexual partners, and don’t share needles and syringes.’
In that case, it could be argued, with justification, that something good for the public health of the community had been accomplished.
But for the patient (and the health professional), when the patient’s test was positive, major disadvantages existed. Not only did the patient have to cope with the knowledge that he had been infected with a potentially lethal virus, but neither patient nor doctor knew what his future prognosis would be. Was progression inevitable? Would he eventually develop AIDS or an AIDS-related condition? Could anything be done to stop the progression? We know the answers to those questions now, but in 1985 there were no known answers. It was all very unsatisfactory.
There were major social disadvantages of a positive test as well. There was already stigma and discrimination towards people infected with the virus, not just confined to gay men and intravenous drug users. One little girl, Eve van Grafhorst, infected through a contam-inated blood transfusion at birth, was barred from attending pre-school in a NSW country town. So great was the discrimination and feeling against her that her family was forced to flee to New Zealand, to the everlasting shame of the Australian public. People testing positive for HIV antibodies were to find that there were implications for work, life or travel insurance, housing, and future overseas travel. Patients and doctors needed to consider these matters carefully. And of course there were serious implications for the patient’s past, present and future sexual partners.
At the MCDC, my staff and I decided to adopt a conservative policy towards the HIV antibody test. We let it be known that the test was available at the Clinic (and at Steamworks and Club 80). We would offer the test to all those ‘at risk’, but we would ensure the patient was acquainted with the advantages and disadvantages before making a decision. It was to be the patient’s decision entirely; staff were not to put pressure on the patient. Postponing a decision on the test was entirely reasonable if the patient was unsure. It was a different matt
er if patients were ill with possible AIDS or an AIDS-related condition. Only in those cases would we actively encourage the patient to be tested, because then the test would be an aid to diagnosis. Every patient who chose to have the test had to come back in person to receive their result, preferably from the clinician who had seen them the first time; we would give no results over the phone.
This policy increased the consultation time with gay patients, sex workers, intravenous-drug users, and the ‘worried well’. The approach added to the workload for Tom and Beth (our two contact tracer/counsellors) and Peter Hayes, the AIDS clinic nurse, because many patients wanted the opportunity to talk the whole issue through – time the doctors and other nurses were not able to give in a busy clinic. Surprisingly, despite the drawbacks and disadvantages of the test for the individual, a significant proportion of gay men, at the clinic, at Steamworks and at Club 80, decided to take the test. Sadly and inevitably, a significant proportion of those tested came back positive.
I and other clinic doctors soon recognised that several gay patients had an AIDS-associated condition known as PGL – the persistent generalised lymphadenopathy syndrome – with symptoms of night sweats, weight loss, diarrhoea, and clinical signs of enlarged lymph nodes in the neck, armpits and groin. These patients were HIV antibody positive, so they were definitely infected with HIV, and they had a mild to moderate degree of immune deficiency, but not yet severe enough for them to develop an opportunistic infection or cancer. Thus, they did not yet have AIDS. There was little we could do for these patients, except provide symptomatic relief, counselling and regular monitoring of their T cell counts.
In late 1984, a young gay man was considerably more unwell when he presented to the MCDC. He had a cough, massive weight loss and oral thrush (candidiasis).5 The doctor who saw him referred him to Fairfield Hospital for admission and assessment. He was found to have PCP,6 thus making him the first diagnosed AIDS patient at the MCDC. Fortunately, his episode of PCP responded to treatment. We saw him regularly thereafter, and he lingered on for a year before succumbing to another AIDS-defining condition while at Fairfield.
Then, in early 1985, I diagnosed my first patient with AIDS. He was a good friend and his story set the pattern for so many others who were to follow over the next decade.
James
In February 1985, I led a new patient into an examination room at the MCDC. He was a handsome young man, but you could see from his expression that he was anxious. Although he was much younger than Michael and I were, over several years we had come to consider him a good friend. That morning, unannounced, he had turned up at the clinic and demanded to see me. ‘You’ve never been here before. You can’t just walk in and expect the Director to see you,’ they’d said to him. ‘He’s very busy this morning.’ But James had been insistent. He claimed I was a friend. Eventually, they’d come and asked. When they told me who he was, I’d said yes at once.
‘What is it James?’ I asked, taking care to hide the concern in my voice. ‘Why have you asked to see me?’
Without speaking, he turned and looked at me. Wiry black curls surrounded his finely featured face but his expression was anguished. Undoing his belt in one swift movement, he dropped his trousers and with a trembling finger pointed to two black spots on his right thigh.
‘David, what are these?’
I bent down to look more closely and touched the skin lightly with my fingers. Nestled among the black hairs of his thigh were two round and slightly raised marks like squashed blackberries.
‘How long have they been there, James?’
‘Oh, I don’t know … I guess two months.’
‘Are there others?’
‘Maybe one on my arm.’
He rolled back the sleeve of his T shirt and there, clearly outlined on the white skin over the biceps, was another smaller, purplish spot. A small shiver ran down my spine. They were new to me but I recognised these spots. The current medical literature was full of such pictures.
‘James, I’ll have to examine you properly. Strip down to your underpants and lie on that couch.’
I took my time, and examined him carefully. James was a fine specimen of young manhood. I had seen his body, clad only in a towel, the standard dress at Steamworks, most Wednesday evenings for the last few years. He’d lost weight recently. And, there were the black spots, some swollen glands under his arms, and a spray of fine snowflakes on the mucous membrane of his mouth and palate.7 It all added up. He had AIDS.
His troubled eyes caught mine as I bent over him.
‘David, is it … ?’
His lower lip quivered and his eyes welled up. I felt a wave of compassion, but I had to be honest.
‘James, yes, I think it might be something called Kaposi’s sarcoma.’8
He gasped:
‘Kaposi’s sarcoma! That means AIDS, doesn’t it?’
‘That’s true, if it is KS, James. I may be wrong. I need to take some tests.’
‘What sort of tests?’
‘A blood test for the AIDS virus9 and another to test your immune system. And, if you can cope, I’d like to cut off one of those spots and send it for pathology. It won’t hurt, I’ll give you some local anaesthetic.’
He winced, but agreed to have the procedure.
As I worked, I tried to act as if I was in control – the reassuring doctor.
‘I mean to get a specialist at Fairfield to see you, James, just as soon as these results come back. There’s new treatments for KS in the States. They’re looking good. The doctors will know all about it at Fairfield.’
‘Can’t I just see you here? Can’t you treat me?’
His usual self-confidence had deserted him this morning. James looked like a scared school boy. I felt another pang of sympathy for him.
‘No, sorry Jamie. I don’t have the facilities here, and I’m not that sort of specialist. I’ll be sending you to see Dr Anne Mijch. She’s lovely, really kind, and knows her stuff.’
I dropped the excised black lesion into a jar of formalin, and James managed a weak grin. ‘One spot gone, Dr David. Couldn’t you cut them all off this morning?’
‘I could, but it wouldn’t be much use. Without proper treatment, new ones would soon come back.’
I rang Fairfield and spoke to Anne while he dressed. She arranged to see him in a fortnight when James’s results would be available. I told her James was a personal friend of mine.
‘Oh, I’m so sorry, David,’ she said.
James sat hunched in the chair beside me, looking at the floor.
I put my hand on his shoulder.
‘Hang in there, mate,’ I said gently, ‘we can get through this.’
He looked up; his blue eyes met mine. He was trying to draw hope from me, from my expression, from my hand on his shoulder. He dashed away a tear.
‘I was so afraid of this.’
‘I know, Jamie. We all are.’
I wrote down the time and date for his appointment.
‘Is there anyone you can talk to, James? A friend, or a relative?’ He shook his head.
‘There’s no-one. No-one in my family knows I’m gay. I’ve a few gay friends you know – boys from Steamworks – but I couldn’t trust them with this. Everyone’s so shit scared …’
I added my address and home phone number to the piece of paper and handed it to him. ‘Well, don’t rush into telling anyone. You can contact me any time, day or night. And you know Michael, my partner. If you’re okay with me telling him, then you can use us as support.’
‘I would really like that, David. Thanks.’
He stood to go.
‘I’ll phone you as soon as I have results. Meantime, take care and remember you’re not alone. I’m in this with you.’
There was a fleeting smile, then I stood too and enfolded him in a long, hard hug.
With a lump in my throat, I watched him leave. It was lunchtime; the consultation had been lengthy. I heard laughter in the staff tearoom. For once,
I bypassed it and shut myself in my office. I sat quietly for several minutes, head in hands.
I’d been expecting this for so long. I knew there were likely to be Steamworks’ clients who would develop AIDS, but why did it have to be a friend? I really liked James. He was such a happy, gregarious, and uncomplicated young man. And, that sexy grin! We’d met four years before, when I first started doing blood tests at Steamworks. James came from a Maltese Catholic family. He lived on his own in a tiny apartment in Kensington; Michael and I had been there once for his twenty-fifth birthday party. He was unskilled, and worked on the production line in a factory. His social and sexual life cen-tred on the sauna, where he was immensely popular. James liked sex, liked slightly older men, and he liked a good chat. Every Wednesday evening, he dropped by to talk and gossip with us while we waited for clients.
Tell Me I'm Okay Page 11
