Witness to AIDS. Edwin Cameron
the British took the Cape from the Dutch in colonial conquest in 1803. The resplendent robes gave me a full-body disguise. This was just as well. Despite the radiologist’s confidence that the antibiotics would repel the AIDS pneumonia within ten to fourteen days, it proved to be surprisingly stubborn.
Ten days into the circuit, I returned for my fourteen-day check. Studying the new X-rays with me, Dr Jacobs gave me the bad news. It had not cleared. I needed more antibiotics – in a stronger daily dose. Dr Johnson had underestimated the dose my still substantial body weight demanded.
Naturally, if I had got into bed and rested, the drugs would have had a better chance of slaying the microbial dragon raging within me. But bed rest had never seemed an option. In near despair, I returned to Dave Johnson for a further script. He gave me another week on a double dose of bactrim.
The next morning I travelled back to Vereeniging.
But the treatment was ghastly. The powerful antibiotics, in their as yet unavailing onslaught on the PCP, caused a red rash to flush out over my upper torso and face. My appetite, sparse as it was, seemed to vanish. My stomach tightened. Eating was becoming even more difficult. I lost more weight. After being diagnosed with HIV in 1990, my friend Zackie Achmat had experienced a lung infection. On the Sunday after I was diagnosed he came to visit me at home. My breathing was even more laboured than before. I did not feel at all well. It showed. Zackie knew all too well. We sat facing each other, rigid, each unable to speak the words of reassurance and comfort the other needed.
Worst of all was that the antibiotics had further suppressed my body’s weakened antifungal defences. The result was the return of oral and oesophageal thrush. Dave Johnson had prescribed Diflucan – a fantastically expensive, but blessedly effective, antifungal drug. Its expense was later to trigger one of the most dramatic activist challenges to the pharmaceutical industry (which I describe in Chapter 6). For me, the cost of the tablets – about R120, or nearly US$20 a tablet: the approximate equivalent of the daily earnings of an employee in the business sector – was fortunately covered by the judges’ medical insurance scheme. I thought that the precious and expensive Diflucan had done the trick. But no. One of my worst moments – I often think the worst – was one morning at the mirror, two weeks after diagnosis, when I noticed that my tongue once more was flecked with resurgent thrush. My heart sank. It felt like a defining moment, inviting despair. Fungal spores grow on dead bodies . . . The treatment hadn’t beaten the PCP. The thrush was back. I was feeling ghastly. Was my body shutting down for death? Would the treatment fail me?
But I could not allow such thoughts to be more than momentary. I could not let them take hold. I was not yet a dead body. And I didn’t want to become one. I wanted a second chance. Determinedly, perhaps desperately, I continued working. There was in fact much to do. A committee I had been leading since 1996 was advising the country’s law commission, an influential national statutory law reform body, on AIDS. Already, several reports we had delivered had impressed the commission with their thoroughness and their powerful, well-balanced arguments. The commission had endorsed our findings and sent them on to Parliament, where they had found their way into beneficent legislation.
Now we were close to producing recommendations to ban pre-employment testing for HIV – a widespread practice that irrationally and unfairly barred job applicants with HIV from finding or taking up employment. I knew something about the effects of pre-employment HIV testing. In 1993 I started a university-based AIDS law project that offered legal services against AIDS discrimination. One of the reasons was the stream of calls for help I’d been receiving at Wits University’s human rights centre. As the South African epidemic took hold, people came for help against high-handed, sometimes cruel behaviour by employers who were determined – completely impractically – to have nothing to do with AIDS: an ‘AIDS-free’ workforce, as some put it. Some callers were policemen, others were in the army, many were in business and in industrial concerns.
By and large the law commission committee – composed of business people, health specialists, lawyers and activists – agreed that both justice and good sense demanded that the practice be outlawed. Zackie joined soon after we started. He added fire as well as strategic wile to our discussions. We had to work out a compromise to place unanimously before the commission, and with it prepare watertight draft legislation for the commission to pass on to Parliament. It was not easy. One day I adjourned court early in Vereeniging to meet committee members in Pretoria. Soon after, we fitted in an extra Saturday meeting to finalise our proposals. None of this, I thought, could wait. And immersing myself in it somehow anaesthetised me against the panic that my bodily frailty was inducing in me.
Yet there was a tension, and a paradox. I was dealing with AIDS as a judge, chairing a committee, making public statements and important public recommendations. But I was also dealing with AIDS within myself. As the disease’s symptoms raged through my body, the split between the two roles unsettled me more than ever before. I began to think that at some time, sooner rather than later, I would have to unite the public and the personal. I couldn’t continue being a highly visible and respected AIDS policy advocate in public life while dealing secretly with the debilitating effects of the sickness in my own life. It wasn’t a question of ethics. Despite holding public office as a judge, I was, I thought, entitled to keep my state of health to myself. But in simple practical terms it just seemed to divert too much energy. Secrecy is all too often a worrying and time-consuming and energy-sapping business. And it was just unnecessarily exhausting. These thoughts bore fruit just a short while later.
Meanwhile, the extra effort the committee put in at the end of 1997 proved thoroughly worthwhile. Early in 1998, the full commission approved our recommendations on prohibiting pre-employment testing for HIV. The recommendation that pre-employment testing for HIV be prohibited went to Parliament – and just months later a new statute enshrining workplace fairness banned all HIV testing of workers and job applicants unless special court authority was obtained from the labour court.
But the flecks I saw on my tongue and the unrelenting PCP at last persuaded me that I had to allow myself some time off for recovery. The next week offered a respite, as the case my assessors and I were currently trying was drawing to a close. Some of the later trials I could postpone to catch up on during the ensuing January’s court vacation. With my heart in my mouth I called Judge-President Eloff to arrange time off. What questions would he ask? What would he say? Would he support me? As it turned out, he asked nothing. I told him that I had a chest infection and was not feeling well. He asked for no details. Instead, he assured me immediately that it was paramount that I should recover. There would be no problem if I rearranged the circuit to finish the delayed cases later.
Relieved, I put down the phone. For now at least, work could take second place. The last few weeks had taught me some important lessons. For the first time I could contemplate using a space in which I could feel better. For the first time I learned to risk relying on other people for help during my illness. And in every case their responses touched me and moved me and reassured me.
Under attack from the doubled dosage, the PCP was beginning to recede. As it did, Dave Johnson and I discussed when I would take my first dose of antiretroviral therapy. By now there was no question but that I had to start combination therapy. Even if we managed to deal with the PCP and thrush this time with ordinary medications, further HIV-induced weakness and illnesses, progressively increasing, were all that awaited me, like so many before, like so many others in Africa.
The experience of an incapable, inefficient chest and a fungus-clogged gullet had scared me right out of further ambivalence or uncertainty. If there was a chance that the treatment would fail me, there was twice as much chance that it would succeed. What distinguished me from other Africans dying of AIDS was that I had the means – though barely – to clutch at the near miraculous new remedy of antiretroviral treatment.
Dr Johnson and I agreed that I would take my first dose of antiretroviral therapy on the day I had arranged with the judge-president for my break from circuit court to begin. I told my family and some close friends – those whom I felt that I could trust with my HIV status. In a jovial, nearly festive, atmosphere, I took my first pills on Thursday evening 13 November. With a small group of friends sitting around a table on my porch in the warmth of the early summer’s evening, to determined cheers I solemnly