Witness to AIDS. Edwin Cameron
was not technical: it was – jail or community service? My colleague and I both hesitated. Before hearing the appeal, we talked it through carefully. He tended to think we should confirm the magistrate’s sentence. This sort of fraud was serious. And insurance scams were mounting, costing honest consumers hundreds of millions in extra premiums. The courts needed to send a clear message to middle-class offenders – those who used paper, and the opportunities their relative affluence in a poor society offered them, to commit crime. Jail was not only for street thieves and housebreakers and robbers. ‘White collar’ crimes could and sometimes rightly should also land you in jail.
Despite this, my own initial inclination was that the jail sentence was unjustifiably harsh. Both of us were open to persuasion, and each felt that he could persuade the other. During argument the young man’s advocate urged us to set aside the jail sentence. His opponent from the state prosecution office defended it. After the arguments my sense that we should use our appellate powers to intervene clarified and firmed within me. I thought that the young man should get a crucial second chance. That evening I worked late to type up a draft judgment setting out the reasons why. Sitting at my laptop in my study at home I could hear my own breathing. My chest felt heavy, my breath short. But I had to finish the draft. Later, I fell into a damp, unrefreshing sleep. In the morning I handed my draft reasons to my colleague. When I saw him at tea just before my standstill in the stairwell, he promised to think it through.
Thoughts about this case, and others, were close to my mind. But as I leaned against the landing wall they threatened to recede beyond reach. I did not want to be falling ill. Not think myself ill. Not face death. Not face telling my colleagues – or having colleagues suspect, conclude – that I had AIDS.
My doctor’s receptionist fitted me in immediately after court that day. While I sat in the waiting room she brought me a mug of tea. Though it had cooled by the time I took it into the consultation room, I winced painfully as I took the first sip. My doctor picked this up immediately. He looked concerned. ‘That’s a sure sign of thrush right through your oesophagus, Edwin,’ he said. ‘It’s what’s making it so difficult for you to swallow. And it’s also why you’ve lost so much weight. Apart from what the virus is doing to your body, your system just can’t absorb food anymore,’ he explained.
I smiled grimly at my doctor. David Johnson is a spry man who wears crisply ironed shirts and serves his practice and his patients with energetic determination. I had been in his care for six years, and had come to depend on his sympathetic professionalism. Over the previous months he had been tracking my CD4 and viral load counts with increasing regularity to measure my immune system and the virus’s rampaging progress. It was already clear to both of us that my immune system was declining. But it was a stop-start process. For a long time my immune system had been mostly heading downwards. But occasionally it would show an upward spurt. Until that afternoon it had not seemed irreversibly clear that I would fall ill with AIDS or when I would. And once I did, the most difficult question confronted us: what to do about it?
The year before, in July 1996, New York City AIDS clinician Dr David Ho made a dramatic announcement at a conference in Vancouver. Trials across North America had shown what was previously unthinkable – that the virus could be stopped in its tracks. The first AIDS case was formally diagnosed in June 1981. For more than a decade and a half, repeated hopes that modern medicine could beat the disease proved false. Those infected with HIV, with virtually no exceptions, went on to develop AIDS. And almost everyone who developed AIDS died. It was a simple, grim, inevitable prognosis.
That inevitability medical science now seemed to have overcome. For the first time, it seemed that doctors could deal with the disease – by administering a closely monitored package of antiretroviral drugs. Previous attempts to treat AIDS with one or even two antiretrovirals had failed. The virus soon found a way around them, emerging stronger and more resilient. But new types of anti-HIV drugs were constantly being developed – particularly a new class that stopped HIV from breaking up the proteins it needs to produce new viral particles. And Ho and his colleagues now realised that using more drugs of different types in combination with each other was the key. Triple (or in some cases quadruple) therapy, with drugs chosen for their different angles of attack on the virus’s means of replicating, were now proving dramatically successful in keeping it at bay. ‘Highly active antiretroviral therapy’ (HAART) was medicine’s best answer yet to AIDS – and it looked extremely promising. Doctors were talking about ‘long-term viral suppression’. And if patients kept taking the right drugs in the right combinations, it looked as though it might even be permanent.
At first some doctors went so far as to hope that over time the new drugs would eliminate the virus from the body completely by stopping viral replication. That would go beyond treatment. It would be a cure. But such hopes proved to be over-optimistic. In the face of the drug onslaught, the virus craftily recedes into the nooks and crannies of the body (the lymph nodes, the testes, the brain membrane), into ‘viral reservoirs’, where current forms of treatment cannot reach it. When the patient stops taking the drug combinations, the virus in most cases emerges, rampant once more.
Even so, talk of long-term viral suppression was an astounding breakthrough. For the first time in the fifteen-year struggle with AIDS, medical science offered patients the hope of escaping what had previously been certain suffering and eventual death. After Ho’s experimental results were released, other doctors adopted his breakthrough methods. For nearly a year and a half, doctors had been administering different antiretroviral drug combinations to tens of thousands of sick and dying patients throughout North America and Western Europe.
The results were astounding. In the rich world, deaths from AIDS plummeted downwards. AIDS illnesses – those that were bringing my own life to a standstill – had almost been eliminated. Once treatment stopped the virus from replicating, ravaged immune systems recovered. And the body, once more healthy, could fight off opportunistic infections.
‘Lazarus’ stories from the wealthy world reached us in South Africa – dramatic, first-hand accounts of patients in the very last stages of their battle with AIDS, who were saved from their deathbeds and restored to life. In the bright December sunshine of Perth, Western Australia, where I addressed a conference on HIV at the end of 1999, Graham Lovelock, one of the organisers, told me his story. At the end of November 1995 he had been admitted to hospital with dwindling health and a poor prognosis. He seemed beyond hope. Every drug had been tried and his body was at the limit of its fight against the virus’s effects. His family and friends had virtually resigned themselves to his imminent death; he did not himself expect to leave hospital again. But a doctor at the hospital managed to get him onto an early trial of the new drugs. In due course he arose from his bed, not dead, but very much alive and more or less restored to health.
The stories from Sydney, Los Angeles, New York, London and Munich were the same. Flushed with excitement, Time magazine made Dr David Ho its ‘man of the year’ for 1996. The end of the first phase of the struggle with AIDS had been reached: there was a way to manage it medically over the long term.
But the good news had a dismal side to it. In 1997 the drugs were unimaginably expensive. Drug companies protected their intellectual property rights – their right to stop competing companies and poor nations from using the knowledge needed to produce and distribute the drugs – with ferocious zeal. Their commercial interests – and, they claimed, their ability to carry out further expensive life-saving research – depended on the huge profits that patent exclusivity brought them. And Western governments, particularly the United 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