Witness to AIDS. Edwin Cameron
a powerful ‘protease inhibitor’ called ritonavir (marketed as ‘Norvir’).
The cost of the new treatment was enormous. The three drugs I was taking (as well as the protease inhibitor, I started taking an AZT-like drug called D4T, and another called 3TC) cost more than R4 000 (or roughly US$600) for one month’s supply. This was fully one-third of my after-tax monthly income. Unless the prices of the drugs came down sharply, and soon, I would not be able to continue to afford to pay this amount every month. Too many others too close to me shared my monthly salary.
The medical insurance scheme for judges – the same one that covered members of the new democratic parliament – limited AIDS benefits of any kind to a derisory R800 per year. That amount would cover barely one-fifth of a single month’s supply of my new lifesaving drugs.
This surely was monstrously unfair. My fellow judges and Members of Parliament who had high blood pressure (and comparable ailments) enjoyed a chronic medication scheme of R10 000 per year – more than twelve times the maximum cap for AIDS. Why should AIDS be treated differently? Realising, as my CD4 count gradually fell, that I would at some stage need to rely on AIDS medications (or, at worst, on terminal treatment for AIDS), I had gone a year or two earlier to see a judicial colleague in Cape Town who had been specially appointed by the heads of court to represent the interests of judges on the scheme’s governing board.
I had told my colleague that I had HIV – and that I feared that at some point I might fall ill with AIDS. Initially he seemed shocked and sympathetic. He promised me that he would have the unfair limit removed to equal that of comparable chronic conditions. If blood pressure or heart disease or diabetes were covered, indeed why not AIDS?
But perhaps the shock he felt at hearing that I had HIV overcame his sense of purpose. For nearly two years I sent him repeated reminders and pleas. He asked for information and statistics, which I produced. He said that he needed a memorandum to put before the board. I gave it to him. All this resulted in repeated promises, but no action. The AIDS treatment limit of R800 per year stayed. No doubt he had other things on his mind. Perhaps he temporised because he found AIDS a difficult issue.
But the extremities of illness lent me boldness. Besides, I felt more and more that I had less and less to hide. While I was absent from the judges’ common room in Vereeniging, Judge-President Eloff must have mentioned to colleagues that I wasn’t well. (And why should he not?) Colleagues began calling me at home. How was I? Could they do anything to help? They were missing me at court. I should get well soon.
My family’s love and that of many friends had always felt secure. But it began to dawn on me that there was much, much more support and acceptance available to me than I had realised. And that I could draw on it. My anxious fears about my colleagues’ possible reactions to AIDS began to yield to the loving reality of collegial acceptance and support. Of course they didn’t know (or didn’t know for sure) that it was AIDS. But some of them surely guessed. And in any event the fact was that it didn’t and shouldn’t make a difference.
After six weeks of feeling seriously sick, I was no longer in any mood to footle around with discrimination in the judges’ medical insurance scheme. By Africa’s standards, my salary was indeed comparatively large. But needy dependants in my household and outside it shared it with me. And I could simply not afford to continue spending one-third of my total disposable income on the new drugs.
Towards the end of November, after my ten days off, we resumed in Vereeniging. During a short adjournment, while police witnesses were being summoned to court, I opened my laptop. Spurred on by new energy and new determination, I wrote my judicial colleague a swingeing account of my sustained entreaties to him. Yet, I charged, he had delivered on none of his promises. If he was not willing to take immediate action to end the irrational discrimination against AIDS, he should, I suggested, resign from the medical scheme’s board.
For good measure I wrote also to Judge-President Friedman of the Cape, a wise and humane man who had had originally been responsible for securing my colleague’s appointment to the insurance scheme’s board. The reaction of both was immediate – and positive. Expressing warm concern, Judge-President Friedman invited me to meet him in his chambers in Cape Town during the December vacation. I arrived fully prepared for confrontation with my dilatory colleague. Instead, he too was all readiness to help. Both he and Judge-President Friedman undertook that the matter would be dealt with properly and immediately. The unfair anti-AIDS discrimination would be set right.
And in the new year it was. The judges’ and parliamentary medical insurance scheme stopped discriminating against AIDS as a chronic medical condition. First it granted AIDS the same coverage that all chronic medical conditions received. Later it increased its coverage for all AIDS conditions and treatments even more. Currently it offers judges and parliamentarians more than ample support for antiretroviral treatment – at least, for those judges and members of the legislature who are willing and able to claim its benefits.
In the meantime, the court year was drawing to a close. My colleague in the case of the young insurance fraudster called me to say that he had thought further about the case. He was now more convinced than ever that the magistrate’s sentence was correct. I took the opposite view. Further reflection had made me conclude that the magistrate’s sentence was wrong, and that our intervention was required. It be-came clear that we would not reach agreement on the outcome on whether the young man should be given a second chance. Because of our deadlock, Judge-President Eloff had to convene a new panel to hear the appeal again. He presided himself. Two other judges sat with him – three in all, so that if they too disagreed, the majority would prevail. Although the new panel also hesitated, the three judges all decided that justice required that the young man be given a chance to make good. He would not go to jail. He would keep his job. And he would repay the insurance company benefit payout that he had falsely claimed. He, too, would have a second chance. A sentence hanging over him – admittedly, not a death sentence – would be remitted.
My week-long break had come to an end. Again I started the daily drive to Vereeniging. But by then I realised that something incontrovertibly extraordinary was happening with my body. I was taking all my antiretroviral tablets twice a day, observantly and carefully. It certainly was not a breeze. The protease inhibitors in particular were difficult and unpleasant. The tablets were bulky and hard to swallow. At room temperature the precious drug soon degraded and lost its efficacy. The plastic capsules became blistered and started bleeding their contents. So they had to be kept chilled at all times – for the eighteen months I took them – making travelling very complicated.
What was more, the protease inhibitors left an utterly vile taste. Two hours after taking them, morning and evening, my stomach would erupt in gastric protest. For months after starting on them, I battled nausea. I also developed what the doctors call ‘peripheral neuropathy’ – nerve endings that responded badly to the new chemicals in the body. In my case, the nerve response manifested as perioral neuropathy. My teeth and sinuses became intensely and painfully sensitive. I remember coming into the kitchen one morning and biting into what seemed a deliciously tempting watermelon slice someone had left out of the fridge overnight. The room-temperature contact caused me to wince and then weep with pain. It was far too cold for my agonisingly ultra-sensitive teeth.
But all this was trivial beside the growing realisation that something quite unmistakably dramatic was taking place within my body. My tiredness was lessening. It was disappearing. In its place, I could feel a daily access of miraculous new energy. Life forces were coursing through my body. Illness was yielding to a nearly novel feeling – renewed and joyful wellbeing. Every evening, every morning, every long court day in Vereeniging, as I heard evidence in court, evidence of a different kind presented itself to me through my body. It was there – in the way my blood coursed through my veins, the way I heard myself breathe, the way my muscles felt. I not only regained my appetite – despite the nausea the protease inhibitors induced when I took them, I became ravenously and continuously hungry. For the first time in months, my stomach was digesting food properly. And my gaunt body avidly claimed every morsel of it to make up for the twelve kilograms (twenty-five pounds) in weight I had lost.
There was only one word for it. It was glorious. The drugs were working. I could feel that I was getting