Tell Me I'm Okay

by David Bradford

  At once, I wrote and faxed an urgent letter to the Immigration Department, detailing Liang’s medical condition and highlighting the fact that he had been voluntarily assisting medical research by participating in an important clinical trial at Fairfield, which should ultimately benefit Australian citizens. I asked for clemency for him so that he could remain in Australia on medical grounds. I pointed out that he had almost certainly contracted HIV in Australia rather than Malaysia and so, in a sense, was Australia’s responsibility. I asked my successor at the MCDC, as Liang was still listed as a patient there, and the Medical Superintendent at Fairfield Hospital, to write and fax letters of support to the Immigration Department as well, which they both did immediately. In addition, I penned a hand-written letter to the Minister for Immigration, whom I had met on one occasion, asking him to intervene in Liang’s case on humanitarian grounds.

  In the event that Liang probably would be deported, I tried to assemble as much trial drug (almost certainly AZT in Liang’s case) from Fairfield – and active AZT from returned supplies of patients who could not tolerate it – plus a good supply of Bactrim from the Fairfield and the MCDC pharmacies for prophylaxis against PCP.14 The next day, accompanied by Beth Hatch from the MCDC, both of us well armed with drug supplies, we took a visit to the Detention Centre for a farewell meeting with Liang.

  The Detention Centre was as forbidding as a prison, with razor wire and many locked doors. The staff viewed us with considerable suspicion, were unnecessarily rude, and took an age to check our drug packets. I have heartily detested the Commonwealth Immigration Department as an institution ever since that time. It entirely escapes me why Australia finds it necessary to treat undocumented immigrants as if they are criminals.

  It proved a sad little visit with Liang. He was upset, depressed and was dreading his return to Malaysia. We did our best to cheer him and I promised I would keep in touch with him by letter.

  The Immigration Department completely ignored our pleas. I heard nothing back from the minister, which upset me more than anything else, as I had thought he was a decent man. On the appointed day, Liang was duly deported. I wrote to him at the address he had given me several times, but it was many months before I received a tragic letter back, written in a shaky hand. The following are a few excerpts from it:

  For myself the situation is not good. This letter is written on the hospital bed. I was admitted to the Kuala Lumpur General Hospital last week. I have been having light fever continuously for 2 weeks before I came in. My weight has dropped to 48.5 kg (it used to be 60kg in Melbourne). My body gets weaker and weaker. My face is not very nice, becoming rough – very noticeable. I also lost my sense of balance at that time (during admission). My T4 count has dropped to 69. Two of the overseas trained doctors in AIDS are not around at the moment [he had written between Christmas and New Year] therefore those left do not know how to treat me.

  I hope you will not feel too bad about these (sic) news. Whatever is going to happen, is going to happen. Take good care of yourself and send my regards to Michael, Lots of love from Liang.

  The letter showed that by this time Liang had become severely immune deficient. His fever and loss of balance suggested that he had developed a brain or spinal cord infection or tumour, and that his HIV infection had now progressed to AIDS. The next communication from Malaysia came a few months later – a ‘Thank you Doctor’ card from Liang’s ‘cousin brother’, telling me that Liang had passed away peacefully and that his remains had been cremated the next day.

  There is little doubt that the outcome would have been the same, even if Liang had been permitted to stay in Australia. He would have eventually failed on his AZT therapy as all my other patients did at the time, but his cruel deportation denied him good palliative and terminal care at Fairfield Hospital. If he’d remained in Australia he would have undoubtedly died surrounded by his many friends from Melbourne’s gay community.

  The Australian Response to AIDS

  Many people made important contributions in those crucial early years. These individuals included public health officials in almost every state and territory, medical researchers, clinicians working with affected patients, virologists like Ian Gust, and immunologists like David Jose in Melbourne, Ron Penny and David Cooper in Sydney. But, if one person can be singled out for special mention in the handling of the HIV epidemic in Australia, it is the Federal Minister for Health, Neal Blewett. He mused somewhat ruefully on one occasion that, ‘What’s good for votes is bad for public health.’

  Despite that, he made good public health decisions even when they were hugely unpopular, like funding the provision of free disposable needles and syringes for intravenous (IV) drug users. The minister proved a steadying influence, taking advice from a variety of people, including members of affected communities, and set the scene for sound policy development. Dr Blewett was the right man for the right job at a critical point in public health history. His policy decisions were non-discriminatory, and he managed to persuade the federal opposition and the state governments (with the exception, at first, of Queensland and Tasmania) to support his approach – no mean feat in Australian politics on any controversial issue. Australians in general – and gay men in particular – owe him an enormous debt. AIDS in Australia was contained and controlled because of the climate of reason and rationality he created, as it was not in those early days in the UK or the USA.

  Bill Bowtell, a senior adviser in the Minister’s office, happened to be a friend of one of Melbourne’s gay doctors, David Plummer. At that time I had employed David for part-time sessions at the MCDC. As well, quite voluntarily and without remuneration, he used to assist Tom Carter with blood testing for syphilis and HIV from consenting clients at Club 80 on Friday evenings. In early 1985, David managed to organise an informal visit to the MCDC from Dr Blewett and Bill Bowtell. The minister sent a message that he would like to chat over coffee with any members of staff who wanted to give up their Saturday morning. At least seven members of my staff turned up, including David Plummer, Tom Carter and Beth Hatch (the clinic’s contact tracer/counsellors), and Ian Denham, a part-time doctor in the clinic and soon to become one of the two doctors for the AIDS Referral Clinic.

  The minister was friendly and relaxed, encouraging free and open discussion. The topics touched on were frank and explicit. We talked about gay men’s sexual behaviour and what went on in sex-on-premises venues and open-air ‘beats’. We discussed how some bisexual married men, or men with regular female partners, used ‘beats’ or male saunas to indulge in homosexual sex on the side, without their female partners being aware.

  We discussed the new antibody test and the difficulties convincing gay men to be tested. We suggested safeguards that ought to be in place in the administration of the test – especially, that some form of pre-test counselling should take place and that the test should only be done with informed consent. We told the minister about the responses of patients to a positive test result. We especially mentioned the middle-aged man who had committed suicide after a positive result. The minister asked how our (so far) small number of patients with AIDS and AIDS-related conditions were coping. It was an extraordinary morning in the Clinic.

  Developing Australia-wide Policy on the HIV Antibody Test

  Not everyone agreed with the measured approach to HIV antibody testing that we had adopted at the MCDC. Some public health authorities were strong advocates for testing, with or without patient consent. They argued that people with a positive result would not want to pass on their infection, so would refrain from unsafe sexual practices (or even ‘hopefully’ refrain from sex entirely). Knowledge of status, such advocates believed, would be a powerful motivator for responsible behaviour in future. Those of us with years of experience working in STI clinics had a less optimistic view of human nature and the motivating power of a positive test result.

  The strongest advocate for all gay men being tested was Professor David Penington. In June 1986, the second Interna
tional AIDS Conference took place in Paris. There were 2,800 delegates, which was a large medical conference in those days. A sizeable contingent from Australia went to Paris, including me and several of my STI colleagues from other capital cities.

  During one of the Conference breaks, Professor Penington summoned doctors working in Australian STI and HIV/AIDS clinics to meet with him. In a rather high-handed fashion, he laid down the law. He said it was mandatory that we administer the HIV antibody test to all gay or bisexual patients attending our clinics, with or without their consent. He claimed this was following best practice in public health. Our opposition to his proposal was vigorous and almost unanimous, with the Albion Street clinic in Sydney being the only clinic that backed Professor Penington. The rest of us argued that adopting his policy was one sure way of discouraging healthy gay men from attending public and private STI clinics. We thought that introducing coercive measures into clinics would rapidly destroy the trust that had been built up gradually – and painstakingly – between clinic staff and gay men over several years. To avoid being tested for HIV without their consent, they would simply refuse to attend, even when they had symptoms of a possible HIV infection or other STIs. And healthy, asymptomatic men, who with counselling might agree to be tested, would be put off completely. Thus, the ‘silent’ asymptomatic HIV epidemic in gay men would be driven underground. We added (quite correctly at the time) that there was no published evidence that knowing one’s positive HIV status motivated anyone to modify future sexual behaviours.

  Professor Penington was not accustomed to having his edicts challenged. But, a little shaken by such vigorous opposition the worthy dean acknowledged the loss of that skirmish and withdrew from the field. He was not finished with us yet though, and lobbied Health Minister Neal Blewett to intervene.

  In July 1986, not long after the Paris Conference, the minister convened a round table, one-day conference on HIV blood testing policy, held in Canberra. I was not a delegate to this meeting, as there were enough influential people to carry the day. Professor Penington, Dr Julian Gold from Albion Street and a few departmental public health officers were the only ones strongly in favour of routine testing for people with high-risk behaviours. The meeting attendees decided that ‘all individuals at risk of HIV and AIDS should be encouraged to seek confidential counselling … In that context, the option of testing may be raised with each individual presenting for counselling’.

  The round table conference concluded that routine HIV antibody testing, and testing without informed consent, were neither appropriate nor advisable in Australian medical practice. As a direct result of the conference, the minister directed Ita Buttrose’s NACAIDS Committee to produce guidelines on HIV testing for health professionals and patients, and that the guidelines should be available in pamphlet form for wide distribution – not just in STI and HIV/ AIDS clinics, but throughout hospitals and general practices around the country. At the next NACAIDS meeting, members voted that a small working party should be formed to carry out this task.

  I was surprised, given I was not a member of the NACAIDS Committee, to have a phone call from Ita Buttrose herself the next day asking me to chair the working party. She said we were to develop a health professionals’ pamphlet that explained the guidelines formulated at the Canberra meeting. As well, we were asked to write the content of an information pamphlet for patients contemplat-ing being tested. I could select the members of the working party myself, with Ita’s only stipulation being that I must include someone from Albion Street Clinic in Sydney to provide balance. She said she would be happy if other members came from Melbourne because it would minimise travel costs. I selected seven people for the working party: myself, Dr David Plummer and Dr Ian Chenoweth (two Melbourne gay doctors), Phil Carswell (President of VAC), Tom Carter and Beth Hatch (the contact tracers/counsellors at the MCDC) and Mark Anns (Albion Street’s psychologist). We held the meetings after work at the MCDC and communicated by tele-phone with Mark Anns in Sydney. For the last meeting, when the actual wording of the pamphlets was to be finalised, Mark flew down to participate in person.

  We debated the issues vigorously, and did our best to ensure that the health professionals’ pamphlet was true to the Canberra agreement and that it explained clearly that HIV antibody testing should only be performed after the patient had given properly informed consent. In the patient pamphlet, we tried to provide all the information known at the time about HIV infection, incomplete as it was, and to outline all the advantages and disadvantages of knowing whether your HIV antibody test was positive or negative.

  The working party was important because it set the ground rules for HIV antibody testing in Australia. Those ground rules carried over, largely unchanged, into the First National AIDS Strategy, which was endorsed by the Federal government, and eventually by all State and Territory governments, in 1989. Things have changed radically since then. The availability of highly effective, easy to take, side-effects-free, anti-HIV drugs makes HIV antibody testing a rational move for anybody who has been at risk. However, the core principles still hold good; there is still the need for informed consent before performing HIV tests. Phil Carswell wrote to me recently:

  We established the basic principles of properly informed, confidential and anonymous testing by medical staff who (supposedly) knew the importance of the result. We (also) pushed for only trained staff to do the test and give results (in person).

  The working party reported back to NACAIDS, and NACAIDS accepted our guidelines and the content of the pamphlets. The docu-ments were speedily printed and widely distributed; by the second half of 1987 they were in every clinic throughout Australia. The Victorian Government took our recommendations seriously and introduced regulations to the Health Act which made it mandatory that HIV antibody testing should be done by doctors, or by other health professionals, but only after they had undergone an accred-ited training course on the HIV antibody test and its use. Up until that time, ‘doctor knows best’ summed up the standard approach for all medical testing. The newly established principle of informed consent for HIV antibody testing was a fundamental change in medical practice for both doctors and patients.

  * * *

  11Brass and Gold: AIDS and Australia, Bay Books Sydney 1985: page 153.

  12AZT stands for azidothymidine, later called zidovudine or Retrovir, the first drug to show some effectiveness against HIV in AIDS patients in 1987. Used alone, it had a limited period of effectiveness (6–12 months). After 1996, when triple (three-drug) therapy for HIV became available, AZT initially formed one of the back-bone drugs of triple therapy. It is no longer used much, as it has several unacceptably toxic side effects.

  13Up to the time of this clinical trial, AZT had only been available for patients with an AIDS diagnosis, not for those who were HIV positive, but otherwise well.

  14This concept will be explained a little later in the text.

  Chapter Eleven

  I Leave the MCDC

  Towards the end of 1986, I found administrative work was taking up a good deal of my time. I felt that my skills were essentially clinical and the need for primary medical care for patients with advanced HIV infection would grow exponentially over the next decade. I therefore resigned as Director of the MCDC and Chief Venereologist for Victoria at the end of 1986 and bought a one-man general practice in Carlton from Rex Melville, a gay doctor who was moving to Sydney. His practice was composed predominantly of gay men, although there were also transgender patients, intravenous drug users, young people with mental health problems, and some – rather brave and non-judgemental – local people who merely used the practice for their basic medical care.

  When I opened the practice doors in Carlton, I had inherited about sixty known HIV positive people. None were seriously unwell. Most were moderately immune deficient, like Liang, with T cell counts in the 300–400 range. They used to attend every three months for continued monitoring. Over the next couple of years, the patients’ immune function
continued to worsen, with their T cell counts continuing to decline. Decline was the rule rather than the exception. It was frustrating because, until the AZT trial became available, there was absolutely nothing doctors could do about the situation. It was difficult to keep a hopeful approach when faced with a patient whose three monthly T cell counts, over a two-year period, dropped from say 350 to 150. I was never impressed that any of the standard advice we gave patients about healthy living had a significant effect. Some of my patients who continued to party, smoke nicotine and marijuana, eat junk food and overindulge in sex seemed to do just as well as those who led exemplary lives and obeyed medical instructions to the letter.

  By 1987, there was a little more motivation for patients to know their HIV status and to be monitored regularly with T cell counts. It was noticed that when the T4 cell count fell below 200, patients had a significant risk of developing PCP, the commonest opportunistic infection seen in Western countries. Clinical trials had shown that if a patient took one tablet daily of a cheap drug called Bactrim (or Septrin), PCP could be prevented. This prophylactic therapy wasn’t much, but it was better than nothing. It bought patients a slightly longer period of reasonable health.

  During the course of 1987, Dr Ron Lucas, senior physician at Fairfield, offered me the chance to do an outpatient clinic at the hospital twice a week. We agreed on a three-hour clinic on Wednesday evenings and another on Friday mornings. These clinics were for patients who had AIDS, AIDS-related conditions, positive HIV antibody tests, or just concerns about AIDS in general. As well, Dr Peter Greenberg (director of the HIV clinic at RMH) invited me to assist in a weekly outpatient clinic, as well as making me Honorary Visiting Venereologist to the hospital. I accepted both offers and employed a part-time assistant doctor to cover the sessions in my Carlton practice when I was away at Fairfield or the Royal Melbourne.