Tell Me I'm Okay

by David Bradford

  ‘Yes, sure, Doctor. I certainly don’t want PCP. If you say that works, then I’ll happily take your advice.’

  The months rolled past. Ronald visited me regularly and just as regularly his T cell count dropped a little further with each three-monthly test. As often happened with my patients, we became friendly. The more I saw of his work, the more I came to appreciate what a gifted artist Ronald was, and that he was a warm, intelligent human being. Ronald remained generally well, but there were tell-tale signs of HIV progression: he was losing weight; he had bouts of oral thrush (candidiasis) and needed regular anti-fungal medication for it; he had frequent attacks of non-specific diarrhoea; and he said he felt more easily tired. Even painting was becoming an effort. Despite his strong, positive outlook, he had days when he felt depressed. I promised that as soon as I saw anything in the medical literature that suggested a definite advance, I would ensure that he had as early access as possible to any new drugs.

  In mid-1996, when I read about the development of protease inhibitors and the viral load tests becoming available in Australia, I discussed these new advances with Ronald at length. At last, he declared himself willing to try the new HAART combination therapy. It came none too soon for him. His T cell count had fallen dangerously low, to 50; his viral load was over a million and he was clearly unwell. Virtually as soon as we were able to sign him up under a special access scheme he commenced the new combination treatment. Under the scheme, Ronald had to sign a document, waving all claim against the drug company concerned if something went wrong.

  I remember Ronald telling me of a dilemma he had about that time. He had been offered a commission – I think a large mural at the airport – that would require some months of work. In view of his precarious health, he didn’t know whether he should accept, or in fact, whether he would live to see it through. What did I think he should do?

  ‘Do you want to do the work, Ronald?’

  ‘Yes, definitely! It’s a great opportunity. And I’ve already planned it out in my head.’

  ‘Do you feel strong enough to make a start?’

  ‘I think so, David.’

  ‘Look, human life is uncertain, anything can happen at the best of times. I might drop dead before your next appointment, who knows? If you want to do it, I think you should just go ahead.’

  I have to admit I was more confident in what I said than in what I felt. I had no guarantee Ronald would tolerate the new treatment without unpleasant side effects, and I had no assurance that he would respond well. I need not have worried. Ronald’s response to HAART was little short of miraculous. His viral load dropped from over a million to an undetectable level in the space of two months, and his T cell count started a long, slow climb to safer levels. He gradually gained weight and energy and began looking well and fit again. Improvement was not without cost, however. In the first few months on the new combination therapy, Ronald did have some difficult side effects. These included bouts of diarrhoea, night sweats and a very unpleasant attack of herpes zoster (shingles). In the longer term, peripheral neuropathy became an ongoing problem for him, legacy of his exposure to the AZT-class drugs. He still experiences troublesome numbness, tingling and pain in his extremities.

  Ronald continued to see me in the clinic and we remained good friends. When the clinic moved to the Doll’s House in 2001, I obtained permission from the Health District to commission Ronald to do a painting for the new clinic. I feel proud that his painting hangs still in the sexual health clinic in North Cairns.

  Ronald and I also share a personal story, which had an unexpected outcome for me, as you will see. One morning he came into the clinic to get his latest results, looking mischievous. ‘Well,’ he said cheekily, ‘aren’t you going to give me my results, Dr Mary Bradford?’

  For once I was speechless. I hadn’t been called Mary Bradford since my last year at Manly Boys High School.

  Ronald hastened to explain. He had been in Sydney since our last consultation, finalising a commission with a children’s book publisher for a story he was to illustrate. He had lunch with one of the firm’s editors, and over the course of the meal the editor asked him why he didn’t move to Sydney instead of remaining in the Far North. Ronald replied that among other reasons, he didn’t want to leave his doctor with whom he had established a good relationship. The editor idly asked the doctor’s name, and when Ronald responded, the editor gave a cry of surprise and exclaimed, ‘Not Mary Bradford, surely?’

  The editor had been one of my four close friends at high school, all of whom I’d lost touch with. Subsequently, I was able to resume contact with them after almost fifty years. Ronald assured me that my secret nick-name was safe with him.

  I have stayed in touch with Ronald, even after I retired from full-time work. Since 1996, Ronald has prospered. He has achieved a colossal body of work and has a firmly established and richly deserved reputation as an Indigenous Australian artist. At the same time he has worked part-time in health promotion in the field of Indigenous sexual health in Far North Queensland. He has become an exceptional role model for his own people.

  Ronald’s health has not been without problems in recent years. He developed kidney stones due to one of the more recent drug combinations which predisposes patients to their development. In addition, Ronald also developed gall stones and stones in his salivary glands, and has had several hospital admissions for these complications. Despite these problems, Ronald remains hopeful and positive about his future. He is now on a single tablet per day containing three active anti-HIV drugs which are working well. However, Ronald tells me that every day when ‘he pops a pill’, it brings to mind the sad memory of his close circle of friends, all of whom died of the disease.

  Ronald owes his life to the timely availability of effective anti-HIV medication. I am sure his tenacity for living and his dedication to art played a major role in keeping him alive, against all odds, until the new treatments were available. Ronald is a living embodiment of how the medical management of HIV has changed for the better since 1996.

  Retirement

  In 2004, I decided to retire from full-time work and relinquish my position as Director of Sexual Health. I was sixty-three and mindful of the example of the physician, Sir William Osler, who held the view that doctors should not hang on forever, but retire early to make way for the younger generation. It was time a more youthful mind than mine should face the challenges of sexual health in Far North Queensland. Queensland Health procrastinated for a year before filling my position, but eventually appointed my former assistant from Carlton, Dr Darren Russell, in my place. I was pleased with the outcome, and continued doing part-time relieving work at the Cairns Clinic until 2013.

  HIV since 1996

  HIV infection has become a medically manageable condition. The initial three-drug combination therapy was highly effective in sup-pressing HIV in its replication cycle in the body. However, the early three-drug combinations had problems: complicated dosing schedules, confusing interactions with foods and other medications, and unpleasant side-effects. With the older anti-HIV drugs, side-effects were also extremely common. There were immediate ones like nausea and vomiting, diarrhoea, headaches and skin rashes. And, there were longer-term ones like painful peripheral neuropathy, unsightly loss of subcutaneous tissue in the face and limbs (lipoatro-phy) and abnormal fat deposition (lipodystrophy) causing ‘pot bellies’ in the abdomen and ‘buffalo humps’ on the back of the neck. There was also a tendency to develop diabetes, and, though rarely, a potentially fatal complication called lactic acidosis.

  In the following years, research into HIV drug therapy intensified. Clinical trials proliferated. Our clinic in Cairns became part of a network of community-based clinical trial centres around Australia. New drugs with less troublesome side-effect profiles and easier dosing schedules came onto the market. Drugs of different classes that acted in different places in the HIV life-cycle were developed. It was a major advance, too, when dual drug combinations bega
n to be combined in one tablet. In 2006, two drug companies combined forces and produced a three-drug combination called ‘Atripla’. This single tablet needed to be taken only once daily. My HIV patients in Cairns benefitted from all these new developments, as did patients throughout the rest of Australia and, gradually, throughout the world.

  There was one obvious fact, but one we had to stress again and again with patients. Triple combination therapy would not work if you did not take the medications reliably. There was little room for error. I tried to illustrate this fact by analogy. I used to say to patients that the three-drug combinations were just ‘keeping a lid’ on the virus. They did not eliminate the virus completely. It was always there bubbling away underneath the lid. Missing a few doses was equivalent to ‘lifting the lid’. It allowed virus to escape. Escaped virus was free to multiply in the body, where it was exposed to low, but no longer suppressive, concentrations of drugs. This created ideal circumstances for drug-resistant mutations to develop. Repeated missed tablets meant that the triple drug combination the patient was taking would be gradually rendered ineffective because of viral resistance. In practice, this happened with tiresome regularity in patients who, for one reason or another (because of side-effects or just being forgetful), were not able to take their medications as prescribed. Now that drug dosage is easier to manage and side-effects are relatively uncommon (and much milder when they do occur) poor adherence to medication is less of a problem.

  In Australia, the prognosis for a person well established on anti-HIV treatment is rather better today than the prognosis for someone on treatment for diabetes. There is no reason why the life of a person with HIV should be of poorer quality, or of lesser duration, than anyone else’s.

  HIV Prevention – TasP, PEP and PrEP

  There have been advances too in the prevention of HIV infection. Condoms are no longer the only option, although they still play an important role. Patients on three-drug anti-HIV medication whose viral load becomes consistently undetectable have been shown not to transmit HIV to their sexual partners. If the virus is undetectable in the blood then in general it is undetectable in other bodily fluids, including genital secretions.

  TasP, which stands for ‘Treatment as Prevention’, seeks to exploit this recent finding. If everyone infected with HIV in a community is started on effective three-drug combination therapy at diagnosis, they will no longer constitute a risk for transmitting virus to their sexual partners. In theory, over time, HIV should die out. But, for TasP to work in any given community, it presupposes three things: that everyone infected has been tested and knows their HIV status, that everyone HIV positive takes effective treatment from the time of diagnosis, and that everyone on treatment is fully compliant with their medication schedule.

  There are other preventive strategies: PEP (post-exposure prophylaxis) and PrEP (pre-exposure prophylaxis). PEP is well-established and widely used; if a patient has a risky exposure, PEP involves prescription of a combination of anti-HIV drugs for a month. Risky exposures include unprotected, receptive anal or vaginal sex, needle-sharing among intravenous drug users, or a deep needle-stick injury in a health care setting. These exposures obviously need to have been with a known HIV positive person, or a person likely to be at risk of HIV. Clinical experience with PEP in these situations has shown it to be effective at preventing HIV infection, providing the medication is commenced within seventy-two hours of exposure. PEP is available free of charge in Australia at all emergency departments and sexual health clinics. Side-effects to the anti-HIV drugs used in PEP occur in some people. People who have had a significant risk exposure to HIV often experience a high degree of anxiety, and this in itself may predispose them to experiencing side-effects with the medication.

  Pre-exposure Prophylaxis (PrEP) is a more recent innovation. A patient at high risk of HIV infection takes a two-drug combination of potent anti-HIV drugs continuously. Examples might be: a very sexually active, HIV negative gay man with multiple partners, or the HIV negative sexual partner of a known HIV positive person (i.e. an HIV negative person in a so-called ‘sero-discordant’ sexual relationship). Clinical trials have shown that, with good compliance with medication, over a period of one to several years, patients taking PrEP have about a ninety percent risk reduction of acquiring HIV. Side-effects from the commonly used medications are uncommon. At present, there are a series of clinical trials in Australia, through which a limited number of gay men can obtain PrEP free of charge. Those not on the trials have to pay for their own PrEP medication, which is prohibitively expensive for most people. A cheaper option is to buy and import generic drugs online, using an Australian doctor’s prescription. If ongoing clinical trials demonstrate that PrEP continues to be safe and effective long-term, it is possible that PrEP drugs may be licensed for this purpose by the Australian Pharma-ceutical Benefits Scheme in the future.

  Medical science has made great gains in the treatment and prevention of HIV infection. People in many countries around the world have been able to benefit from these advances. However, HIV infection is by no means beaten. The epidemic in many developing countries is not over. Unfortunately, neither a therapeutic cure nor an effective vaccine is available at the time of writing.

  The Legacy of the AIDS Epidemic

  At the beginning of the 1980s, most doctors thought we had infectious diseases under control. Our medical armamentarium was impressive. We had antibiotics, antivirals, antifungals, anti-protozoal agents, and vaccines for common infections. Devastating epidemics seemed to have become a thing of the past, except perhaps in some resource-poor nations. But infectious disease physicians knew otherwise, and vainly fought a battle to teach their colleagues to be more respectful for the capacity of micro-organisms to threaten health. The coming of HIV/AIDS put a stop to complacency, while subsequent epidemic outbreaks like SARS, Ebola, and bird-flu have kept us reminded of our vulnerability.

  For medical practice, HIV threw up profound challenges. Firstly, it challenged our ways of approaching and taking histories from our patients. Doctors of all varieties and specialties had to accept that understanding the social, sexual, workplace, recreational drug-using, and behavioural histories of our patients was vital if a sound diagnosis was to be made. Doctors had paid lip-service to holistic history-taking, but in practice, doctors thought they could second-guess what behaviours the patient in front of them might engage in. The amazement that greeted the news of some well-known celebrity developing AIDS or dying of the disease was not confined to the general public – health workers in the field often showed the same incredulity. Unexpected positive HIV tests and diagnoses of AIDS in people least suspected of having the virus began to occur frequently in both hospital and private practice. Sometimes, the diagnosis of AIDS was delayed for an unacceptable length of time in a patient with a set of puzzling symptoms, simply because the treating doctors could not bring themselves to accept the possibility of HIV infection in that particular patient.

  Secondly, the coming of HIV infection made clinicians, and those in charge of blood banks, aware that they could no longer be careless in their handling of body fluids and tissues, nor in the sterilisation of needles and syringes. Health practitioners began using disposable, single-use needles and syringes, and accepted the concept of ‘universal precautions’, i.e. that whatever their apparent risk, every individual patient must be regarded as potentially infected with HIV or another blood-borne virus like hepatitis B or C. The aim of universal precautions was to limit spread of infection to healthcare staff, to other staff in medical establishments, and to other patients. It had to apply in the drawing of blood, in the safe disposal of needles, in surgical and obstetrical procedures, and in blood bank practice. Such universal precautions should have been applied earlier because the highly infectious, blood-borne virus hepatitis B had been known since the early nineteen-seventies. But, it was the coming of the lethal HIV virus and AIDS that finally brought about long-overdue change in practice.

  One can
only hope that the third area of medical practice that changed with the coming of HIV/AIDS will be a lasting one. It may be the most important legacy HIV has left us. I speak of the change in medical practice from a doctor-driven style of practice – the old traditional ‘doctor knows best’ – to a style of practice where doctor and patient develop a genuine partnership. No longer should a doctor dictate from a position of authority what tests a patient should be subjected to, what information she or he is given (or not given), or what treatments they should follow. In the eighties and nineties, AIDS patients, especially those coming from the vocal gay community, refused to be dictated to. They educated themselves about HIV/AIDS and often knew more than some of their doctors. They demanded access to the latest drugs, they questioned the tests they were undergoing, the treatments they were prescribed, and the manner in which they were looked after in clinics, hospitals, or at home in their own beds. They were trail-blazers for the HIV patients who were to follow. More than that, they blazed a path of medical practice for future patients with non-HIV conditions. They made it common practice for patients with any medical condition to expect that they could have substantial input, if they should so choose, in their medical management. They made good doctor-patient communication the norm, instead of the exception. In addition, those early AIDS patients demanded the right of their non-biological families, their partners and their lovers, to be included in the medical decision-making. All these new gains have been for the greater good, both for future patients and for the medical profession as a whole. It is an ill wind that blows no-one any good, and doctors have learned valuable lessons since the coming of AIDS.

  HIV/AIDS taught me and many doctors on the front line professional humility. There is no more salutary lesson for a doctor than to have to accept that there is nothing curative to be done for a patient. It taught me to listen carefully to patients facing a mortal illness, to take into account their needs and desires, and to manage them medically as they wished to be managed, not as I, or a medical textbook, might dictate that they ought to be managed. Often it meant literally venturing into the unknown for both doctor and patient.