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PLENARY PRESENTATION
BY JUSTICE EDWIN CAMERON
HIGH COURT OF SOUTH AFRICA, MONDAY 10 JULY 2000

 

FIRST JONATHAN MANN MEMORIAL LECTURE: "THE DEAFENING SILENCE OF AIDS"

BY JUSTICE EDWIN CAMERON, HIGH COURT OF SOUTH AFRICA, JOHANNESBURG

It is a great honour to be asked to deliver the first Jonathan Mann Memorial Lecture. It is fitting that this remembrance should have been created to honour Mann's memory and legacy. He more than any other individual must be credited with first conceiving and constructing a global response to the AIDS epidemic. This he did not only as founding director of the World Health Organisation's Global Programme on AIDS between 1986 and 1990, but also after he left the WHO, in his theoretical and advocacy work within the discipline of public health.

It is particularly fitting that the lecture should be initiated at the start of the first international conference on AIDS to take place on African soil. Jonathan Mann's earliest experience with the epidemic was in Africa, where from March 1984 to June 1986 he was director of the Zaire AIDS Research Programme. It was here that Mann first confronted the social complexities and the dire implications of the disease.

Mann's work in Africa included epidemiological, clinical and laboratory components. In retrospect it is clear that it was on this continent that the motive forces impelling his insights into the epidemic were formed. He published early research indicating that HIV transmission occurs only rarely in the home or healthcare setting. His work in Zaire subjected him to an arduous schooling in all aspects of HIV: surveillance and epidemiology, issues of testing in a developing country, case definition, condom usage, and exposure amongst commercial sex workers. It alerted him from the outset to the fearful twinned menace of HIV and tuberculosis. His time in Africa also attuned him to questions involving children and pediatric AIDS, and he published pioneering work on what has perhaps become the epidemic's most poignant issue in Africa - transmission of the virus from mother to child.

But it was not in only the details of the epidemiology and management of HIV that Mann's years in Africa yielded insights that later proved critical. His work amongst Africa's at-risk communities, with Africans living with HIV and with those dying from AIDS, with the healthcare personnel, mothers, sex workers and government bureaucrats in Africa formed the basis of an insight he later termed a "very intense, emotional, and personal" discovery. This was his realisation during the 1980's that there are empirical and theoretical links between human rights abuses and vulnerability to HIV/AIDS. In each society, Mann later wrote, "those people who were marginalised, stigmatized and discriminated against - before HIV/AIDS arrived - have later become over time those at highest risk of HIV infection".

Mann's statement cannot be accepted without nuance, since in Africa it is relative mobility affluence that have placed people at risk of exposure to HIV. But Mann's analysis here had led him to a more fundamental and general insight - one that formed the focus of his future work and advocacy. This was his realisation that health and human rights are not opposing, but are complementary, approaches to what he called "the central problem of defining and advancing human well-being".

In relation to AIDS, Justice Michael Kirby of the High Court of Australia - one of the world's most eloquent voices for truth and fairness - has termed this "the HIV paradox": the insight that sound reasons rooted not only in respect for human rights, but in effective public health planning, necessitate a just and non-discriminatory response to AIDS; that recognition of and respect for individual human rights does not impede prevention and containment of HIV, but actually enhances it.

In this perception Jonathan Mann located the core of his remaining life-work. And his commitment to advancing its practical realisation constitutes his most profound contribution to securing a humane world-wide response to the AIDS epidemic. Amidst the grievous facts of the epidemic, the one gleam of redemption is the fact that nowhere have the doctrines of public health overtly countenanced repression and stigma, discrimination and isolation, as legitimate governmental responses to AIDS.

That there has been discrimination and stigma against persons with AIDS and HIV, on an enormous and debilitating scale, is certain. The death by stabbing and stoning of Gugu Dhlamini, the township activist, not twenty kilometres from here, in December 1998, provides a brutal testament of such hatred and ignorance. But these practices have not been supported - at least officially, or in any large measure - by the institutional power of the world's public health systems. That public policy at national and international level have weighed against them, constitutes a significant portion of the legacy of Jonathan Mann.

But this does not exhaust his legacy. In the fourteen years since Mann left Zaire for Geneva in 1986, the epidemic has manifested momentous changes. The two most considerable are these: demographics of its spread; andthe medical-scientific resources available to counter it.

In its demographics HIV has altered from an epidemic whose primary toll seemed to be within the gay white men of North America and Western Europe, to one that, overwhelmingly, burdens the heterosexual populations of Africa and the developing world. The data are so dismaying that reciting the statistics of HIV prevalence and of AIDS morbidity and mortality - the infection rates, the anticipated deaths, the numbers of orphans, the healthcare costs, the economic impact - threatens to drive off, rather than engage our sympathetic imagination. Our imagination shrinks from the thought that these figures can represent real lives, real people, and real suffering.

But amidst the welter of disheartening data, two facts stand out very clearly:

But the demography of HIV has been overlain by a shift even more momentous and one that in its nature is optimistic. It is the fact that over the last half-decade, various aggregations of drug types, some old and some new, have been shown, when taken in combination, to quell the replication of the virus within the body. The result has been exciting, life altering and near revolutionary. For most of those with access to the new drug combinations, immune decline has not only halted, but been reversed.

In most of Europe, in North America and in Australia, illness and death from AIDS have dropped dramatically. Hundreds of thousands of people who a few years ago faced imminent and painful death have been restored to living. Opportunistic infections have diminished, and suffering, pain and bereavement from AIDS have greatly reduced.

Beneficent social effects have come with the medical break-through. The social meaning of the new drugs is that the equation between AIDS and death. AIDS can now be compared with other chronic conditions which on appropriate treatment, and with proper care, can in the long term be subjected to successful medical management. Amongst the public at large, the result has been that fear, prejudice and stigma associated with AIDS have lessened. And persons living with HIV/AIDS have suffered less within themselves and in their working and social environments.

In short, the new combination drug treatments are not a miracle. But in their physiological and social effects they come very close to being miraculous.

But this near-miracle has not touched the lives of most of those who most desperately need it. For Africans and others in resource-poor countries with AIDS and HIV, that near miracle is out of reach. For them, the implications of the epidemic remain as fearsome as ever. In their lives, the prospect of debility and death, and the effects of discrimination and societal prejudice, loom as huge as they did for the gay men of North America and Western Europe.

This is not because the drugs are prohibitively expensive to produce. They are not. Recent experience in India, Thailand and Brazil has shown that most of the critical drugs can be produced at costs that puts them realistically within reach of the resource-poor world. The primary reason why the drugs are out of reach to the developing world is two-fold. On the one hand, drug-pricing structures imposed by the manufacturers make the drugs unaffordably expensive. On the other, the international patent and trade regime at present seeks to choke off any large-scale attempt to produce and market the drugs at affordable levels.

With characteristic prescience, Mann in his address at the XIth International AIDS Conference in Vancouver in 1996 foresaw the significance of the treatment issue. He said that of all the walls dividing people in the AIDS epidemic, "the gap between the rich and the poor is most pervasive and pernicious".

It is this divide that, fourteen years after Mann left Africa, threatens to swallow up 25 million people in Africa.

I speak of the gap not as an observer or as a commentator, but with intimate personal knowledge. I am an African, proudly an African. I am living with AIDS. I therefore count as one amongst the forbidding statistics of AIDS in Africa. Including the fact that nearly five million South Africans who have the virus.

I speak also of the dread effects of AIDS not as an onlooker. Nearly three years ago, more than twelve years after I had sero-converted, I fell severely ill with the symptomatic effects of HIV. Fortunately for me, I had access to good medical care. After treatment for opportunistic infections that were making me feel sick unto death. Then my doctor started me on combination therapy. Since then, with relatively minor adjustments, I have been privileged to lead a vigorous, healthy, and productive life. I am able to do so because, twice a day, I take two tablets - one containing a combination of AZT [zidovudine] and 3TC, and the other Nevirapine [Viramune]. I can take these tablets because, on the salary of a judge, I am able to afford their cost.

If, without combination therapy, the mean survival time for a well-tended male in his mid-forties after onset of full AIDS is 30 - 36 months, I should be dead by approximately now. Instead, I am more healthy, more vigorous, more energetic, and more full of purposeful joy than at any stage in my life.

In this I exist as a living embodiment of the iniquity of drug availability and access in Africa. This is not because, in an epidemic in which the heaviest burden of infection and disease are borne by women, I am male; nor because, on a continent in which the virus transmission has been heterosexual, I am proudly gay; nor even because, in a history fraught with racial injustice, I was born white. My presence here embodies the injustices of AIDS in Africa because, on a continent in which 290 million Africans survive on less than one US dollar a day, I can afford monthly medication costs of approximately US$400 per month.

Amidst the poverty of Africa, I stand before you because I am able to purchase health and vigour. I am here because I can pay for life itself.

To me this seems a shocking and monstrous iniquity of very considerable proportions - that, simply because of relative affluence, I should be living when others have died; that I should remain fit and healthy when illness and death beset millions of others.

Given the epidemic's two most signal changes, in demographics and in medical science, it must surely be that the most urgent challenge it offers us is to find constructive ways of bringing these life-saving drugs to the millions of people whose lives and well-being can be spared by them.

Instead of continuing to accept what has become a palpable untruth (that AIDS is of necessity a disease of debility and death), our overriding and immediate commitment should be to find ways to make accessible for the poor what is within reach of the affluent.

If this is the imperative that our circumstances impose upon us, one would have expected the four years since Vancouver to have been filled with actions directed to its attainment by those with power to change the course of history and the force of the epidemic.

Instead, from every side, those millions living with AIDS in resource-poor countries have been disappointed. International agencies, national governments, and especially those who have primary power to remedy the iniquity - the international drug companies - have failed us in the quest for accessible treatment.

 

> > > CONTINUES: part 2

 




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