States, supported them. While patent exclusivity lasted, the companies charged as much as they could for the drugs.
In wealthy countries, the public health services were simply buying the drugs for AIDS patients at the astronomical prices. But in Africa – where the huge majority of the world’s people with AIDS and HIV live – prices were a death-delivering obstacle. Only the miniscule number of people with AIDS who could afford to pay the cost of combination therapy from their own pockets stood to benefit from the new treatment. The breakthrough was perfected just as the epidemic was starting to show its most catastrophic effects in central and southern Africa. Yet the benefits of treatment were denied to those most desperately in need.
In this setting my own position was one of exceptional privilege. My job as a High Court judge paid well. At the end of 1997 my High Court job was paying me pre-tax just less than R30 000 per month [the equivalent of roughly US$4 000]. This was much less than leading lawyers earned in private practice. But it was about eight times the average salary of employees in the business sector – and almost thirty times the average monthly income of all South Africans taken together. This put me in an income bracket beyond the dreams of most of Africa’s 700 million people – and also of most of the continent’s thirty million people living with AIDS and HIV.
So I had choices – the choices that relative affluence conferred. The question was how to exercise them. Apart from my visits to Dr Johnson I was – with his conditional support – seeing a homoeopath. Sensibly, although disavowing the primacy of conventional Western medicine, she recognised that homoeopathic treatment could have limits. She made few promises. ‘I can keep you free from infections. And I will certainly try to keep your immune system as healthy as possible. But if the virus becomes too strong for my remedies, you will have to turn back to conventional medical treatment.’ For ordinary infections, she gave me remedies free from antibiotics that not only seemed to heal but also comforted. In the six years I’d been seeing her, I felt I had benefited.
But my panting breath and my clogged throat showed that homoeopathy had not managed to stop the virus from running rampant through my body. So the big decision was whether I should start with antiretroviral drug treatment. I was what AIDS specialists called ‘treatment-naive’. My body had never been exposed to any AIDS drugs, and seldom to any antibiotics – I was an ideal candidate for successful treatment.
At my last meeting with Dr Johnson, in September, my CD4 count had for the first time dipped below 200 – a clear sign of imminent AIDS. (The CD4 count of a normally healthy person is well over 800.) At this time Dr Johnson warned me: ‘If you want to carry on seeing how long you can manage without starting on the antiretroviral drugs, that’s fine. But as your doctor my formal advice to you has to be that you should start medication now.’ He treated me as a well-informed patient with the ability to make my own choices – and wanted me to have maximum freedom. So he gave me all the facts I could possibly need to make an informed choice. (Sometimes he gave me too many. He had the alertness of a puppy, and its eagerness. Sometimes I couldn’t deal with it. I wanted him to stop showing me how up-to-date he was. ‘I am not here as a judge or lawyer or policy-maker. I am a patient! I want solace and guidance – not expositions of virological learning or the latest treatment breakthroughs!’)
Given my doctor’s on-the-record advice, why was I so reluctant to start treatment, especially when it was showing such promise? One reason was the side effects I knew that I could expect. The drugs are immensely powerful. They have to be. Powerful enough to reach into the abstruse corners of the body’s genetic mechanisms, where HIV replicates, to put a stop to its machinations. So powerful that in doing so they unavoidably affect other body functions – upsetting the digestive system, causing painful nerve abreactions (tingling, numbness) and redistribution of body fat. Rare toxic reactions, some even fatal – when patients or their damaged livers just cannot tolerate the force of the drugs – gave me additional pause.
I also feared something starker: that the drugs wouldn’t work for me. Dr Johnson told me that his colleagues in rich countries were reporting success rates of about 70 per cent. Wonderful. But this also meant that for almost one-third of those starting on treatment in 1997 the drugs did not work. What if I was amongst them? Reported success rates on antiretroviral therapies are now well over 90 per cent – partly because many of the first patients who started on combination therapy in the mid-1990s had in desperation tried each of the drugs one by one, making the adaptive virus wary and resilient to any further onslaught. In Africa that problem barely existed. But in 1997 doctors didn’t fully appreciate the importance of ‘drug naivety’. So the thought of treatment failure chilled me, dragging me from exhausted sleep at four in the morning to blinking wakefulness in the dark. What if this was it?
To postpone starting on the drugs delayed constructive action. But it seemed to keep hope alive. And, until now, apart from increasing tiredness, I wasn’t actually showing any symptoms. I relied on the grinding treadmill of work in the Johannesburg High Court as an ally. As I grew more tired, I worked harder to try to keep up. And that, I reasoned, was why I was getting more tired. The self-deception was neat (denial comes in many forms). As long as it wasn’t AIDS.
But on the stairwell on Tuesday morning 21 October 1997 this reasoning fell apart. I was critically short of breath. And even though I had stayed up late working on my draft judgment the night before, this, I knew, was not from overwork. Dr Johnson asked me to take my shirt off. I sat with my legs dangling uncomfortably over the edge of his high examination table. Carefully pressing his stethoscope to the front and back of my chest, he listened to my breathing. ‘You don’t need to listen,’ I tried to keep it light. ‘I can tell you that it’s PCP.’ In Africa the main killer of AIDS patients is tuberculosis. In the 1980s, among the gay men of North America, it was PCP – pneumocystis carinii pneumonia. An ordinary fungus, commonly found in the lungs of humans and mammals, causes it. Most toddlers in most families have been exposed to pneumocystis. To healthy adults it can do no harm, lurking in the lungs without causing any noticeable trouble.
But to malnourished youngsters – and to adults suffering from immune debilitation – it can be fatal. The latent, harmless infection flares up into a rare type of pneumonia that before AIDS was virtually unknown. Unless treated, the pneumonia is lethal. The website of the United States Centers for Disease Control (CDC) still intones with simple bluntness that in such cases ‘increasing pulmonary involvement leads to death’.
But PCP is difficult to diagnose – especially in an otherwise healthy, strong adult. Although my body’s increasingly unsuccessful struggle with the virus had wasted away 10 kg, I still had 85 kg left – leaving even my tall, 193 cm frame hardly skeletal. Certainly I was thin – ‘overworked’ of course – but I by no means seemed AIDS-wasted. No one seemed to think I had AIDS. Only the previous week in a lift crowded with judges on their way to court a colleague, burly herself, had commented how thin I was. ‘Are you dieting?’ she challenged as I stuttered. She would have been appalled to know the truth. Just as appalled as I felt as Dr Johnson rubbed his stethoscope bup-bup-bup over my chest. He looked worried but uncertain. ‘It seems like PCP, Edwin,’ he said. ‘But we’d better send you for X-rays.’
After court the next afternoon I found myself in the waiting room of a radiology practice in one of Johannesburg’s smart private clinics. I’d spoken to no one about my incipient diagnosis. As the registrar called the cases and my colleague and I disposed of appeal after appeal, I tried to still my panic every time the thought came up. My life seemed to be fracturing in two. In one, I was a working part of the justice administration in newly democratic South Africa – an extraordinary privilege for anyone – even more so for a white person privileged by apartheid, who had thought that democracy would never happen. Judges faced enormous challenges. A fearsome crime wave was beginning to make the public, black and white, sceptical about the principles underlying our ambitious constitution. Were the new rights benefiting only criminals? Despite the clamour, President Mandela’s government, and that of his successor President Mbeki, remained true to their commitment to constitutionalism. Judges and the constitution
