My Body Was Dying by Edwin Cameron (The Con), 10 March 2016
This week, former president Thabo Mbeki admitted to having co-authored the HIV-Aids denialist Castro Hlongwane booklet in his “Monday missives” – letters to South Africa which apparently seek to “set the record straight”. Mbeki also defended his denialist position, which hampered the roll-out of anti-retrovirals (ARVs) to ordinary South Africans and, is said to have unnecessarily claimed the lives of over 330 000 people. In response, The Con, publishes an edited excerpt from Constitutional Court Judge Edwin Cameron’s autobiography, Justice: A Personal Account (Tafelberg), in which he writes about his early battle with HIV-Aids, the benefits he experienced once on ARVs (expensive even for a judge at the point) and the Treatment Action Campaign’s ”principled, energetic, furious assault” on drug companies and the South African government to make ARVs accessible.
Towards the end of September 1997, nearly eleven years after my doctor called to tell me I had HIV, and three years after our country’s transition to democracy, I fell ill with AIDS. The illness hit me hard. Both my lungs were debilitated by pneumocystis pneumonia, or PCP. It is a rare form of pneumonia. Its cause is a fungus that is present in the lungs of many people with normal immune responses. It does no harm there. But in people with a weakened immune system, the fungus opportunistically seizes control, causing severe respiratory problems, and unless treated with strong antibiotics can be fatal.
This fungus was stifling my breath. I lay awake at night, trying to inhale. My lungs felt inefficient, distended, like balloons full of water. But what felt worse was another opportunistic ailment, gastro-intestinal thrush. This fungus thickly coated my mouth, tongue, throat and stomach. It too is often found in healthy people, where it causes no ill effects. But in my body’s weakened state, it bullied itself into control, forming a furry white layer that made it difficult to chew or to swallow. I lost my energy and my appetite. And, when I did manage to take in food, my stomach couldn’t digest it. I was losing my weight as fast as my strength, and beginning to get the gaunt “AIDS look”.
I could not help thinking that fungus grows on decaying bodies. My body was dying.
I had hoped never to reach this pitch of decline and fear. A tiny fraction of people with HIV – less than one-fifth of one percent – manage to elude AIDS. Medical scientists don’t fully understand why. But if you have HIV it is on this group you focus your hopes. You yearn to be among the lucky who will never fall ill. My closest family and friends ardently shared these hopes. After three years of solitariness, remaining silent while feelings of shame and fear churned inside, in 1990 I managed to start speaking with my closest relatives about my HIV.
Like most families, my sister, Jeanie, and brother in law, Wim, and their children, Marlise and Graham, responded with unconditional love and support. Why would they not? So did the small group of friends and the tiny handful of colleagues I gradually told. And they, too – how could they not? Yet, knowing how often people with AIDS faced discrimination and ostracism, I felt grateful for the support I received. I needed it.
By now I was a judge. Three years before, at the end of 1994, President Nelson Mandela, on the recommendation of the Judicial Service Commission (JSC), appointed me to the High Court. When the advocates’ organization, the Bar Society, nominated me for this honour, I was overjoyed. For me, becoming a judge had been a lifelong ideal. I realised I never would or could achieve this in apartheid South Africa. Now we had started on the road to democracy, with a Constitution that included all South Africans equally in the rights it promised. To become a judge now would be a fulfilment indeed.
But something troubled me deeply. Should I publicly state my HIV status?
I felt some anguish about this. I was a vigorous campaigner for rationality and justice in the epidemic. But only a handful of family and close friends knew that I was campaigning for more than just the public issue. I was campaigning also for myself. Were the public, the JSC and President Mandela not entitled to know that I too was living with HIV?
In this perplexity, I turned to an important mentor, Arthur Chaskalson. He was the country’s most distinguished public interest lawyer. For many years he had been one of the Johannesburg Bar’s most respected advocates in both commercial and public interest law. He had been among the defence lawyers in the Rivonia Trial. Then, in 1977, he founded the Legal Resources Centre (LRC). It was the country’s first public interest law firm. It offered free (pro bono) legal services to people oppressed by unjust laws. The impact of its work was deep. His and the LRC’s creative legal arguments garnered many judgments that blunted the impact of apartheid laws. As in the pass law cases, the judgments they secured even made it impossible to enforce apartheid…
When I made my appointment, I mentioned to Arthur’s new secretary only that it was a personal matter. He came to fetch me at front-desk security when I arrived. As he escorted me to his new judicial chambers, he pointed out some of the artworks that his colleague Albie Sachs had started collecting for the court. When we reached his chambers, he first offered me a cup of tea, which I was glad to accept. Then he gravely bade me sit down. As I did, I found myself battling a sudden impulse to say nothing at all about HIV to him. Instead, I forced myself blurt it out without ado. I said, “Arthur, you know I’ve been nominated to become a judge. But I need to tell you something. I have HIV.”
A look of shock appeared on his face. It was clear that the news was unexpected. His first response was to express distress and concern. I murmured my thanks. He paused. Then, intently, he asked questions. How was my health? How was I feeling? What was the prognosis? Was there any hope of medical treatment?
I told him there was no cure, and that as yet there was no realistic prospect of effective treatment. I also told him that it seemed certain that, at some point, I would fall ill and die of AIDS. Despite this, I was in fact still well. I was playing squash regularly with friends like Gilbert Marcus (whom I eventually told, together with his wife Jenny, of my HIV), and keeping fit. But my CD4 count (the count of the most important blood cells that fight off alien organisms, and which mark the strength of body’s resistance) was showing my body’s vulnerability to the ravages of the virus. I told Arthur it was slowly but steadily tracking down.
Then our conversation tracked to my dilemma. Could I take appointment as a judge? And could I do so without a public statement about my condition?
Arthur did not rush in with an immediate disclaimer or assurance. He thought further. He asked me more about living with HIV. And he asked about the law in other countries. What did other countries’ legal systems say about disclosing one’s HIV status before taking a job? And what did the International Labour Organisation in Geneva (ILO) say? I explained that many leading legal systems discountenanced an obligation to disclose HIV status when seeking a job. The ILO, too, recommended against any requirement of disclosure.
After considering carefully, Arthur was clear. I should go ahead with the JSC process. And, if it recommended my appointment, as he thought was sure, I should accept. There was no reason to think that I did not have years of productive service ahead of me. Arthur mentioned Joe Slovo, the head of the South African Communist Party. He had recently accepted a job in President Mandela’s first Cabinet, as housing minister, even though it was known that he was very seriously ill. No one suggested that he should not have accepted because he was ill. And, Arthur said, the judiciary needed lawyers who had been involved in human rights law. It was important for me to become a judge.
Finally, Arthur said, I need make no public statement. Since my health was still good, my HIV status was not of concern to the JSC or to the President.
I left relieved. I was not ready to speak publicly. The dreadful burden of fear and inhibition that those of us with HIV internalise still weighed too painfully on me.
But I knew this was only another step in time. Eventually, I would have to engage with the public, whom I proposed to serve now in the capacity of a judge.
The next step came three years later, after the disease had at last caught up with my bodily frailty. I had lived to see democracy and a rights-based constitution in our country. I had lived to serve as a judge under it. Now, my body weakened, I faced death from AIDS.
But there was help in store. My doctor explained that our immediate priority was to overcome the opportunistic diseases that were besetting my body. With some difficulty he managed to do so. The pneumonia proved hardy against my first two-week bout of antibiotics. I needed a second, stronger, course. And the thrush, which we had repelled with an expensive but wonderfully effective new anti-fungal medication, Diflucan, returned.
In the meantime, I was intent on keeping up my work as a judge. This was not just blind duty. It was also self-help. Continuing work helped me to cling to balance in circumstances that imperilled it. Even so, it was not easy. Some months before, the Judge-President had assigned me to a duty that took me outside the high court’s headquarters in Johannesburg. This meant that I had to preside in the circuit court of the high court sitting in Vereeniging, a riverside town near the famous Vaal townships of Sharpeville and Sebokeng. It added hours to the day. Each morning, I made the hour-long trip Vereeniging. During the lunch break, I lay on the floor of the judge’s room, garnering strength for the afternoon session.
Lying there, hearing my own torturous breathing, it was impossible to imagine how completely I would recover. For, after a grim fifteen-year period of relentless death and disease, and millions of deaths, the landscape of AIDS dramatically changed the year before I fell ill. Drug combinations had become available that could treat it. In 1996, doctors in North America announced that they were treating patients, including some who were extremely sick, and helping them to full recovery. Miraculous stories did the rounds of people on their deathbeds rising up to resume a vigorous life.
This fell also to me. It was a quite extraordinary joy. And it happened with breath-catching rapidity. I started taking anti-retroviral medication in November 1997. From crippling incapacitation with the disease’s worst opportunistic afflictions, only a few weeks later, I was restored to health. The medications’ effect on me seemed and felt little short of miraculous.
The first sign that I was getting better was that I became hungry. Not just hungry. Ravenously hungry. All the time. From being unable to eat at all, I now craved not three, but sometimes four, meals a day. The weight I had lost quickly returned. From being exhausted and tired, and seeing the ravages of opportunistic illnesses on my body, I returned within a very short time to vigorous energy. My skin tone – often a key sign of immune response – recovered. I looked as well as I felt.
But recovery was bought at a high price. Literally. The medications were extremely expensive. At that time, judges earned just under R360 000 per year. To most South Africans, this was a fabulous figure. At that time, the household income of more than three-quarters of my fellow South Africans was less than R4000 per month. By contrast, every month, after taxes and other deductions, the Treasury paid about R12 000 into my bank account. My medications initially included a particularly rare and expensive drug, the protease inhibitor Norvir, or Ritonavir. The monthly cost of my medications was more than one-third of my income. For me, with god-daughters I wished to send to a good school, with my home mortgage to pay off, and with ordinary household and living expenses, it was unaffordable.
But for many of the millions of people in Africa the cost was quite unimaginable. Like me, they faced death from AIDS. Yet they could not possibly afford the medications. I was buying my life with my position and my salary.
The statutory medical insurance that covered judges and parliamentarians barred my condition. Illogically, and unjustly, it listed AIDS as an excluded condition. My colleagues battling high blood pressure, cancer or diabetes could turn to the scheme to cover their doctors’ visits, hospital stays and medication. During his last months in President Mandela’s Cabinet, before he died on 5 January 1995, Joe Slovo needed expensive hospital treatments. The same medical insurance surely paid for these. Yet now it would give me no help in fighting AIDS.
My battle with it lay ahead. For now, to stay alive I had to find the money every month.
I was to be able to do so. I was acutely conscious of how lucky I was. One friend’s gesture moved me deeply. It showed what all the friends and colleagues to whom I had spoken felt, even though they could not match it. One afternoon after court, with the bills for my anti-retroviral treatment streaming in, my friend and former colleague at CALS, Gilbert Marcus, walked into my judge’s chambers. Without comment, he dropped an envelope into my in-tray. Inside was a cheque for R4000 – a month of life.
Zackie Achmat, a friend and comrade who had worked with me at CALS for the AIDS Law Project, was deeply concerned for those who did not have judges’ salaries, or generous friends. In 1998, a year after my own brush with death, Zackie founded the Treatment Action Campaign (TAC). He did so shortly after going public with the news that he was himself living with the virus.
The TAC’s target was the international drug companies who held patents on life-saving anti-retroviral drugs. Most of these drugs were quite cheap to manufacture. But the drug companies’ patent rights meant they could make them cheaply but demand high sums for them. And they did. Their chief argument was that they needed to accumulate war chests for future life-saving research. Many regarded this argument with skepticism – particularly since the companies paid their shareholders fat dividends, and their executives bonuses that sometimes ran into hundreds of millions of dollars.
But even if the assertion that high prices were necessary to make future research and development possible held some water, it surely couldn’t apply in the face of a continent-wide emergency. In Africa, tens of millions of the world’s poorest people faced death from AIDS. The reason was not because no treatment was available. The reason was purely drug company patents and pricing policy. That was surely intolerable. The moral emergency of AIDS in Africa required new thinking, and new flexibility, in both business and politics.
In 1998, the activists’ arguments were regarded as so far-fetched as to be outlandish. But within a few years, they had changed the debate not only on AIDS, but more broadly on the right of poor people to proper healthcare. And today they are widely accepted amongst healthcare planners and even drug companies. What changed the landscape was the principled, energetic, furious assault the TAC and its allies around the world launched on the drug companies.
A death of a close comrade spurred Zackie to more action. Simon Nkoli was a brave and outspoken activist against apartheid. During the Delmas Treason trial, he was imprisoned with other leaders of the internal uprising against apartheid that took place from September 1984. With them, he faced trial for treason and murder.
But there was something special, and unusual, about Simon. Simon was not only an anti-apartheid leader from the townships. He was also a proudly and openly gay man. His defiant courage about his sexual orientation helped win over internal leaders of the ANC to the idea of lesbian and gay equality. This proved crucial. Simon paved the way for the legal arguments we eventually submitted at the crucial times to the CODESA negotiations at Kempton Park. We urged the negotiators to include sexual orientation in the equality clause of the South African constitution. When they agreed, and South Africa became the first country, anywhere in the world, to entrench the right to equality of gays and lesbians, it was a direct result of Simon’s work.
But barely four years after the Constitution came into effect, in December 1998, Simon died of AIDS. It was a grievous loss. For him, the new drugs hadn’t worked. On a rainy night, we gathered for Simon’s funeral in inner-city Johannesburg. The sad rite took place in St Mary’s Cathedral – the very place where in January 1971 the security police arrested The Very Reverend Gonville Aubie ffrench-Beytagh and took him off into solitary confinement.
In a stirring speech to Simon’s mourners, Zackie took the formation of the Treatment Action Campaign to the public. “We are not asking everything”, he said: he realised that government had limited funds for treatment. But, he said, we have to do whatever is necessary “to save the lives of everyone who needs to be saved”.
The campaign gathered momentum. Funders were found. Organisers, field workers, desk administrators and strategists were appointed. Two vital insiders were Mark Heywood and Nathan Geffen. From the start, they provided the steady stream of analysis and strategy that brought the TAC international recognition.
As all this happened, I was finding my own silence increasingly unbearable. In the light of the public statements by Simon and Zackie, it was increasingly clear to me that continuing silence was not possible.
Then, just after Simon’s death, another death was reflected in searing headlines. It was also someone with HIV. Her name was Gugu Dlamini. She was from KwaMashu, a township near Durban. But, unlike Simon, Gugu was not prominent because she campaigned for any cause. And, unlike Simon, she did not die of AIDS. She died a violent death because of fear. Only in her death did she become a campaigner – most poignantly so. She has in death become famous as a symbol of the injury our own ignorance and prejudice and violent hatred can inflict.
Gugu Dlamini died because she spoke openly about her HIV. In an interview on 1 December 1998 – the very day of Simon’s death – Gugu told Zulu-language radio listeners that she was living with HIV. Her openness in that interview sealed her fate. Three weeks later, fellow residents from KwaMashu killed her. They beat and stabbed and stoned her to death.
Her death spoke powerfully to me. If Gugu – who enjoyed none of the comforts and protections my life had – could speak out, why not I?
Arthur Chaskalson knew of my illness and of my recovery. I saw him and his beloved wife, Lorraine, for meals, and our conversations would never conclude without touching on my well-being. Setting up the new court required many pressing duties of Arthur, as did helping guide its jurisprudence through its first landmark judgments. Despite these, he took a warm interest in my wellness.
But Gugu’s death, coming so soon after Simon’s, and in such shockingly different circumstances, made it plain to me that I could no longer be silent. But how to end the silence? And when? Again, I confided in Arthur. In early 1999, just after Gugu died, I was nominated for a position on the Constitutional Court. Just more than three months after Gugu’s and Simon’s deaths, over the Easter weekend of 1999, he invited me to lunch at his home.
Arthur sketched out a plan. I should seize the moment, and the advantage, and make a public statement with maximum effect. I should announce my HIV status, and my successful treatment for AIDS, before the very meeting of JSC that would interview me for the Constitutional Court job.
It was breathtakingly bold. But it was right. And it was perfect Arthur. The hard-headed moralist, the wily legal strategist, and the caring friend.
My public statement had a beneficial impact, in South Africa, in Africa and elsewhere. For me, it was an enormous release. And still today I am boosted by the public affirmation and affection lavished on me. Arthur’s advice, and his timing, were perfect.
Meanwhile, Zackie’s call at Simon’s funeral resounded across the world circle of global health and treatment activists. When the massive two-yearly international AIDS conference chose to convene in Africa for the first time, in 2000, the organizers chose Durban. The afternoon before the conference opened, the TAC held a big demonstration. It was impressive, vivid and clamant. Drug company executives, physicians, healthcare planners, government ministers were confronted with a plain and principled demand: poor people should have access to available medicines. Obstructing this demand was immoral and unacceptable.
The morning after the demonstration, I gave the keynote speech at the conference. I said that I existed as a living embodiment of the iniquity of drug availability and access in Africa. This was despite the fact that I was unlike the prototypical person living with HIV or AIDS in Africa – a black, heterosexual woman. I was a white gay man.
Yet my presence embodied the injustices of AIDS in Africa because, on a continent in which nearly million Africans live on less than one US dollar a day, I could afford monthly medication costs of nearly US $400 per month. “Amidst the poverty of Africa,” I said, “I stand before you because I am able to purchase health and vigour. I am here because I can afford to pay for life itself.”
Within a very few years, the TAC achieved more than its founders could have dreamed possible when it was set up. Its first objective was to challenge the drug companies to make available to poor people in Africa patented drugs that were cheap to manufacture. In this they succeeded. Through a combination of well-directed, principled outrage and masterful tactics, the TAC coaxed and pressured and shamed the drug companies into change.
In a few short years after the Durban AIDS conference, former United States President Bill Clinton and Microsoft founder Bill Gates added their high-level support. Both started foundations with deep commitment to drug treatments in Africa. Their personal interventions led to breakthroughs in the policies of many pharmaceutical companies.
Some radically reduced their prices. Others agreed to grant licenses to manufacturers, in South Africa or India or other countries, who could produce and distribute the drugs cheaply. Yet others agreed to allow importers to bring in drugs manufactured elsewhere, which, under strict patent law enforcement, would have been impossible.
But just as the organizers were putting the final touches to the planning for the Durban conference, in late 1999, an unexpected hazard emerged. It was more menacing than corporate intransigence and high drug prices. And it posed a far greater political danger to the TAC’s goal of universal treatment for AIDS. The threat came from an astonishing source. It was from the President, Thabo Mbeki, who in May 1999 succeeded President Nelson Mandela as President of South Africa.
When President Mbeki assumed the presidency, the epidemic was cruelly corroding the country’s life and health. In less than ten years, the prevalence among women attending antenatal clinics had soared from 0,07%, in 1990, to over 20%, in 1999. As his presidency started, the death toll was already frightening. In 1999, perhaps one quarter of a million people died in South Africa from AIDS-related causes.
How would President Mbeki deal with this crisis of death and suffering?
Unlike President Mandela, President Mbeki had not cut his political teeth in the rough and tumble world of local emerging activist pro-democracy politics. Going into exile at a young age, in the early 1960s, he had been groomed for high office as part of an ANC elite. This included a period at Sussex University in England, where he acquired an advanced degree. He assumed office with an aura of technocratic expertise. And with a reputation as an independent thinker, with a self-acknowledged philosophical bent.
These characteristics strengthened some aspects of President Mbeki’s leadership. But the President’s inclination to self-minded research, and to idiosyncratic reasoning, had consequences for South Africa’s management of the AIDS epidemic that can be described with only one word: horrific. Just months after taking office, President Mbeki started signalling that he planned to upend accepted medical and scientific approaches to HIV, the epidemic, and the treatment of AIDS.
In October 1999, the President spoke in the National Council of Provinces, the second house of Parliament. His reference to the impact of AIDS led him directly to AZT, the popular name for Zidovudine or azidothymidine. AZT was one of the drugs central to life-saving anti-retroviral combination therapies. It was first synthesized in 1964, and used to treat certain cancers. A quarter century later, in the late 1980s, it seemed to show significant promise as an anti-retroviral treatment for people with HIV. But the promise was dashed when studies showed that when the drug was used alone, the virus adapted itself quickly to find ways around is anti-retroviral properties.
That led to the big breakthrough in AIDS treatment – the one that saved my life. It came when doctors started using AZT together with two or more additional anti-retroviral drugs in simultaneous combinations. They found that combination therapy stopped the virus in its tracks. And that it was astonishingly effective – with few side-effects. This is what allowed patients dying of AIDS who received treatment to be restored to full health, amidst vivid and visible drama.
By 1999, when President Mbeki took office, this was already well established scientific knowledge. But because of the extremely high cost of treatment, combination therapy had never been tried on a mass scale. And it had never been tried with large groups of poor Africans. Many practical questions remained about the complexities of mass drug administration. We did not know then, as we know now, that anti-retrovirals would be as spectacularly successful as they have proved amongst rich and poor, young and old, rural and urban, male and female, black and white.
The TAC foresaw this. It realised that there was no time to waste in dallying with reflective uncertainty. It and its allies demanded action. Its core project was to stop the suffering and grief and bereavement of the mass epidemic of AIDS in Africa by extending drug treatments to everyone who needed them.
But now President Mbeki started casting a deep shadow over the fulfilment of this dream. In his address to Parliament on AZT, he took aim at the core scientific propositions providing the basis for anti-retroviral treatment. He asserted that there was “a large volume of scientific literature alleging that, among other things, the toxicity of this drug is such that it is in fact a danger to health”. This, he said, was a “great concern” to government. It would, he claimed, “be irresponsible for us not to heed the dire warnings which medical researchers have been making.” He said he had therefore urgently commissioned his health minister, Dr Manto Tshabalala Msimang, “to go into all these matters” to find out “where the truth lies”.
He urged members of Parliament’s upper house to access “the huge volume of literature on this matter available on the Internet”, so that they could inform themselves of the dangers of AZT.
This speech had menace. First, it seemed to suggest that public leaders were under a duty to undertake their own research on the internet. This would mean delving into masses of writings on difficult questions. If they did not, their views would be deficient. This was an intimidating challenge. Most public policy is formed relying on knowledge and expertise derived from scientific consensus. Was this no longer to be the case, now that President Mbeki was in office?
Second, there was no scientific doubt at all about the effects of AZT. Doctors and scientists had exhaustively studied it over more than three decades. And there was no doubt about its efficacy and importance to people with HIV. It was a highly effective agent curbing retroviral replication of the deadly in their blood. The only mistake doctors made with AZT in the late 1980s was from insufficient knowledge. They used it as a single drug, or monotherapy. So administered, the virus quickly outwitted AZT and other drugs. But doctors set that right in their breakthrough discovery of triple therapy, or combination treatment.
What about AZT’s alleged toxicity? There was equally no doubt that, just like all drug treatments, when AZT was administered in massive and unsuitable quantities, it was bad for the human body. Just like aspirin. The stories of AZT’s “toxicity” were all based on doses that no doctor would consider giving to a patient battling AIDS.
And the “scientific literature” on the internet to which President Mbeki referred was not scientific at all. It consisted of conspiratorial scare-mongering by discredited fringe researchers and their political backers. Respected mainstream scientists regarded them with equal disdain and dismay.
I knew all this. I knew it from the clear and certain voice in which my own body’s vigorous wellness was speaking, after the horror full-blown AIDS had inflicted on it. When President Mbeki spoke in Parliament in October 1999, I had been taking anti-retroviral drugs, in appropriate daily doses, for close to two years. It was the reason I was still alive.
Yet from shortly his October 1999 speech, President Mbeki expressed increasingly outspoken support for views that questioned the science of AIDS. He lent powerful presidential endorsement to discredited dissidents who cast doubt on the medical science of AIDS. He repeatedly questioned the viral aetiology of AIDS, the efficacy and safety of drug treatments for it, and the reliability and meaning of statistics showing that AIDS was having a cataclysmic effect in Africa.
How could it be that these fringe voices had caught the attention of so impressive and thoughtful a leader in a young African democracy? A man who was now the chief executive in South Africa’s new government? One who in many ways was the most powerful person on the African continent – and the most influential African holding power anywhere in the world?
The answer lay in two powerful words. Each of only a single syllable. Race and sex. In North and South America, Europe and Australasia, the AIDS epidemic was largely concentrated amongst men like myself – gay men, or men who, even if they didn’t identify themselves as gay, had sexual relations with other men. Despite acute fears in the mid-1980s, the epidemic never entered the heterosexual population in countries outside Africa on any significant scale.
And, as the epidemic gathered in ferocious worldwide intensity, the same appeared to be the case in south and southeast Asia. There, low and middle income countries had inadequate healthcare systems, like South Africa, which many thought put their populations at risk of mass transmission. Yet no significant national prevalences manifested themselves in countries like India or Thailand.
A compelling set of statistics illustrated the difference. In 1990, both Thailand and South Africa had an estimated national prevalence of less than one percent. But, by 1995, South Africa’s prevalence amongst pregnant women attending public antenatal clinics had skyrocketed to over 10%. By contrast, that of Thailand had stabilized, and even decreased.
The only continent where a mass epidemic of AIDS took fire and spread amongst the heterosexual population was Africa. From Uganda southwards, country after country. Mass epidemics of AIDS. Caused by a sexually transmitted virus. What could the difference be? Was it because Africa was black? Was it because black people had sex differently?
Of course not. Many theories have sought to explain the particular course and shape of the AIDS epidemic in Africa. Some rest on poor healthcare provision. Others suggest that unique patterns of concurrent sexual partners have caused the high rates of HIV transmission. All are contested amongst experts. And none seem satisfactory to me. Most of them point to environmental or behavioural phenomena that also exist in other societies, but without mass epidemics of AIDS.
My own view is that current explanations take too little account of the fact that the epidemic in Africa is not continent-wide. It is sub-continental. The mass epidemic of AIDS in Africa is almost entirely confined to the heterosexual populations of Central and Southern Africa. In west Africa, thirty years after the epidemic ravaged Uganda, no country has yet registered a national prevalence of higher than three or four per cent. Most prevalences in west Africa are 2, 3 or 4%. This makes AIDS a serious public health problem. But not on a mass scale.
The search for a epidemiological key must therefore focus not on Africa but on the Bantu-speaking peoples of Central and Southern Africa.
It is my surmise – cultivated with the precocious confidence of a lawyer entirely untrained in science, epidemiology or medicine – that further research will eventually pinpoint a physiological, not behavioural or environmental, key. Scientists will identify susceptibility to HIV transmission that is peculiar to the Bantu-speaking peoples of our region. In short, a genetic co-factor – something in the bodies of black people in Central and Southern Africa that make them devastatingly vulnerable to infection by HIV. This will explain why a massive epidemic of HIV took place in this region, and nowhere else in the world.
President Mbeki himself missed this point. He regarded the epidemic as African – and the implications of its sexual transmission as applying to all black Africans. This lead him to castigate AIDS scientists and doctors and epidemiologists for inflicting demeaning racial stereotypes on all Africans.
He was desperately wrong. But the real point is that it doesn’t matter. That the mass epidemic of HIV is sexually transmitted, and that it exists in Central and Southern Africa and nowhere else, cannot matter one jot to whether we should offer treatment for the disease. The fact that HIV is overwhelmingly transmitted through sex is of course crucial to how we urge people to take preventive measures.
But the fact that the virus is sexually transmitted cannot matter to our understanding of the virus itself, or of the effects of the disease, and to whether medical science can alleviate them.
The mode of transmission in Africa matters only if you consider sexual transmission something embarrassing. An accusation. Something shameful. In other words, if you brand those who have HIV as sexual sinners. If you think that, you would resent scientific findings that say only your continent, and no other, has a mass sexually transmitted epidemic of disease.
And this seemed to be how President Mbeki saw things. Shortly after his speech in Parliament, he established a “Presidential AIDS Advisory Panel”. Almost half its number were discredited but strident AIDS denialists. One of the key jobs President Mbeki asked was for the panel “to determine if HIV was the cause of AIDS”. But the question was absurd. Scientifically verified evidence had long established that it was.
But President Mbeki responded strongly to criticisms of the panel. He wrote to world leaders, saying that his critics they engaged in an orchestrated “campaign of intellectual intimidation and terrorism” against him. He lionised AIDS denialists as martyrs to true intellectual inquiry. “At an earlier period in human history”, he told President Clinton and other leaders, “these would be heretics that would be burnt at the stake!”
Shortly before the world’s AIDS experts gathered in Durban in July 2000, he wrote to an opposition leader, Mr Tony Leon denouncing those who said that HIV originated in Africa. To say this, the President claimed, was “wild and insulting”.
What then was the cause of the death and illness that was afflicting the continent from Uganda southwards? President Mbeki’s views had emerged most clearly when he officially opened the AIDS conference in Durban. Speaking just hours after the big demonstration led by the TAC, President Mbeki seemed to attribute the ravages of AIDS not to a virus, but to poverty.
He was addressing nearly 15 000 scientists, doctors, healthcare workers and activists from across the world. To this audience, the President noted that the world’s “biggest killer and the greatest cause of ill health and suffering across the globe, including South Africa, is extreme poverty”.
For the President to say this was in itself not disturbing. What was, was the inference he plainly sought to draw – that AIDS was not virally caused, but an environmental phenomenon. He said that “the deeply disturbing phenomenon of the collapse of immune systems among millions of our people” could not be blamed on HIV alone. “It seemed to me”, President Mbeki stated, “that we could not blame everything on a single virus.”
But the President’s most searing attack on those who accepted what science had proven about AIDS was to a university audience in October 2001. His target was treatment activists. Amidst the rising death toll from AIDS, TAC marches in townships and cities were demanding anti-retrovirals for all. President Mbeki took aim at those making demands by “carrying their placards”. They considered black Africans “germ carriers, and human beings of a lower order”, he said who cannot subject their “passions to reason”.
Hence, he said, scientists and treatment activists insisted that Africans must “adopt strange opinions, to save a depraved and diseased people from perishing from self-inflicted disease.” The President was not finished. He added that the conventional explanation of AIDS branded Africans as “natural-born, promiscuous carriers of germs, unique in the world”, and that those adhering to science proclaim that Africa “is doomed to an inevitable mortal end because of our unconquerable devotion to the sin of lust”.
These views were breath-taking in their ferocity. But worse was their frightening consequence for practical policy. If AIDS was not caused by a virus, then it couldn’t be treated with anti-retroviral drugs. If AIDS was caused by poverty, then medicines would not work against it. AIDS had to be addressed by anti-poverty projects. Not anti-retroviral treatments.
This led the President to refuse to allow government to distribute the only known treatment for AIDS – anti-retroviral drugs. The cost in lives and in human suffering was extremely high. As hundreds of thousands in South Africa fell ill and died, the mists of an absurd debate delayed decisive government action for years.
Conservative calculations show that more than 330,000 lives (or what epidemiologists call 2.2 million “person-years”) were lost because President Mbeki thwarted a feasible and timely ARV treatment programme.
But there was one significant difference between the interim Constitution and the final Constitution. This was to prove momentous to the AIDS activists’ challenge to President Mbeki’s policies.
Unlike the interim Constitution, the final Constitution enshrined rights to social and economic goods. The inclusion of this bundle of rights set the South African Constitution far apart from the United States Constitution, or that in Canada, or even the European Convention on Human Rights. The South African Constitution explicitly acknowledged that it was impossible to enjoy equality, freedom, free speech and religion, and freedom of association without a minimum level of social benefits. You had to have education, social security, food, water, housing and healthcare in order to be able to enjoy any of the other constitutional rights.
The new Constitution therefore included the right to basic education and a provision that no one may be refused emergency medical treatment. These two rights are absolute. By contrast, the other social and economic rights are not absolute or immediate. They are expressed as rights “to have access” to various social goods. These include adequate housing, health care services, sufficient food and water, social security and further education.
But government was not required to realise these rights immediately. The Constitution obligated the state to “take reasonable legislative and other measures, within its available resources, to achieve the progressive realisation” of each right.
As one of the chief ANC participants in the transitional negotiation, President Mbeki had fought for a system of constitutional supremacy. Parliament and the executive would not exercise untouchable power. Instead, the Constitution would be supreme. This idea – that there would be constitutional review of legislative and executive action – lay at the heart of the new Constitution. President Mbeki’s own deep skepticism about what caused AIDS, and his consequent reluctance to authorize anti-retroviral treatments, would now be subjected to that very process.
The stage was thus set for an immense drama: one that would determine whether millions of South Africans with HIV faced only death, or whether they would be offered life.
Main Photograph: Judge Edwin Cameron at the Constitutional Court in Johannesburg, South Africa - By Madelene Cronje