Health
and Human Rights: An International Journal
Vol.
5, No. 1
The
Deafening Silence of AIDS
Edwin
Cameron
It
is a great honor to be asked to deliver the first Jonathan Mann
Memorial Lecture. It is fitting that this remembrance should have
been created to honor 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 Organization's Global Programme
on AIDS between 1986 and 1990, but also after he left 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 Central 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.1 He published early research indicating
that HIV transmission occurs only rarely in the home or healthcare
setting.2 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 among commercial sex workers.3 It alerted him from
the outset to the fearful twinned menace of HIV and tuberculosis.4
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.5
But
it was not only with regard to the details of the epidemiology
and management of HIV that Mann's years in Africa yielded insights
that later proved critical. His work among Africa's at-risk communities,
with Africans living with HIV and with those dying from AIDS,
with health care 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.6 This
was his realization during the 1980s 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 marginalized, stigmatized and discriminated against-before
HIV/AIDS arrived-have become over time those at highest risk of
HIV infection."7
Mann's
statement cannot be accepted without nuance, since in some African
countries it is precisely mobility and relative 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: his realization
that health and human rights are not opposing, but rather complementary,
approaches to what he called "the central problem of defining
and advancing human well-being."8
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 insight "the HIV paradox": that sound reasons rooted
not only in respect for human dignity, but in effective public
health planning, necessitate a just and nondiscriminatory response
to AIDS, and that recognition of and respect for individual human
rights does not impede prevention and containment of HIV, but
actually enhances it.9
In
this perception Jonathan Mann located the core of his remaining
life-work. And his commitment to advancing its practical realization
constitutes his most profound contribution to securing a humane
world-wide response to the AIDS epidemic.10 Amid 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.11
That
there have been discrimination and stigma against persons with
AIDS and HIV, on an enormous and debilitating scale, is beyond
question. The death by stabbing and stoning of Gugu Dlamini in
December 1998, not twenty kilometers from here, provides a brutal
testament of hatred and ignorance.12 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.
The fact that public policy at a national and international level
has weighed against them constitutes a significant portion of
the legacy of Jonathan Mann.
But
this by no means exhausts the significance of his work. In the
fourteen years since Mann left Zaire for Geneva in 1986, the epidemic
has manifested momentous changes. The two most considerable are
the demographics of its spread and the 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 communities 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 health care costs, the economic
impact-threatens to drive off, rather than encourage, sympathetic
engagement.13 Our imagination shrinks from the thought that these
figures can represent real lives, real people, and real suffering.14
Amid
the welter of disheartening data, two facts, well-recited though
they are, obtrude with overwhelming force:
- nine-tenths
of all people living with HIV/AIDS are in poor countries; and
- two-thirds
of the total are in sub-Saharan Africa.
Meanwhile,
the demography of HIV has been overlaid by a shift even more momentous.
Over the last five years, 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 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, North America, and Australasia, illness and death
from AIDS have dropped dramatically. In these regions, hundreds
of thousands of people who a few years ago faced imminent and
painful death have been restored to living. Opportunistic infections
have receded, and suffering, pain, and bereavement from AIDS have
greatly diminished.
Beneficent social effects have come with the medical breakthrough.
The social meaning of the new drugs is that the equation between
AIDS and disease and death is no longer inevitable. AIDS can now
be compared with other chronic conditions that, with appropriate
treatment and proper care, can in the long term be subjected to
successful medical management. Among the public at large, 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 consequences they come very
close to being miraculous.
This
near-miracle, however, has not touched the lives of the majority
of those who most desperately need it. For Africans and others
in resource-poor countries with AIDS and HIV, these drugs are
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 large as they did for the gay men of North America and
Western Europe a decade and a half ago.
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 a
cost that puts them realistically within reach of the resource-poor
world.15 The primary reason why the drugs are inaccessible to
the developing world is twofold. 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.16
With
characteristic prescience, in his address at the XIth International
AIDS Conference in Vancouver in 1996, Mann foresaw the significance
of the treatment issue.17 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 lives in Africa.
I
speak of the gap not as an observer or as a commentator, but with
intimate personal knowledge. I am an African. I am living with
AIDS. I therefore count as one among the forbidding statistics
of AIDS in Africa. I form part of nearly five million South Africans
who have the virus. I speak also of the dread effects of AIDS
with direct experience. Nearly three years ago, more than twelve
years after I became infected, I fell severely ill with the symptomatic
effects of HIV. Fortunately for me, I had access to good medical
care. My doctor first treated the opportunistic infections that
were making me feel sick unto death. Then he 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, the other
containing 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 healthy
male in his mid-forties after onset of full AIDS is 30-36 months,
I should be dead by about now. Instead, I am healthier, more vigorous,
more energetic, and more full of purposeful joy than at any time
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 burdens of infection and disease are borne by women,
I am male; nor because, on a continent in which the vectors of
infection have overwhelmingly 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 U.S. dollar a day, I can afford monthly
medication costs of about U.S.$400 per month. Amid the poverty
of Africa, I stand before you because I am able to purchase health
and vigor. I am here because I can afford to pay for life itself.18
To
me this seems an 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, surely 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 secured
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 Mann spoke at Vancouver
to have been filled with actions directed to its attainment by
those with power to change the course 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.
In my own country, a government that in its commitment to human
rights and democracy has been a shining example to Africa and
the world has at almost every conceivable turn mismanaged the
epidemic.19 So grievous has governmental ineptitude been that,
since 1998, South Africa has had the fastest-growing HIV epidemic
in the world. It currently has one of the world's highest prevalences.
Nor has there been silence about AIDS from our government, as
the title of my lecture suggests. Indeed, there has been a cacophony
of task groups, workshops, committees, councils, policies, drafts,
proposals, statements, and pledges. But all have thus far signified
piteously little.
A
basic and affordable measure would be a national program to limit
mother-to-child transmission of HIV through administration of
short courses of antiretroviral medication. Research has shown
this will be cost-effective in South Africa.20 Such a program,
if implemented, would have signaled our government's appreciation
of the larger problem, and its resolve to address it. To the millions
of South Africans living with HIV, it would have created a ray
of light. It would have promised the possibility of increasingly
constructive interventions for all with HIV, including enhanced
access to drug therapies. To our shame, our country has not yet
committed itself to implementing even this limited program. The
result is that many thousands of babies are born every month,
unnecessarily and avoidably, with HIV. They will experience preventable
infections, preventable suffering, and preventable deaths. If
none of that is persuasive, then from the point of view of the
nation's economic self-interest, their HIV infections entail preventable
expense. Yet we have done nothing.
In
our national struggle to come to grips with the epidemic, perhaps
the most intractably puzzling episode has been President Mbeki's
flirtation with those who in the face of all reason and evidence
have sought to dispute the etiology of AIDS.21 This has shaken
almost everyone responsible for addressing the epidemic. It has
created an air of disbelief among scientists, confusion among
those at risk of HIV, and consternation amongst AIDS workers.
To
my regret, I cannot believe that President Mbeki's speech at the
official opening of this conference last night has done enough
to counter these adverse conditions. I personally yearned for
an unequivocal assertion from our president that HIV is a virally
specific condition that is sexually transmitted, which if uncontained
precipitates debility and death but for which antiretroviral treatments
now exist that can effectively and affordably be applied. To my
grief, the speech was bereft of this.
One
of the continent's foremost intellectuals, Dr. Mamphela Rampele,
has described the official sanction given to skepticism about
the cause of AIDS as "irresponsibility that borders on criminality."22
If this aberrant and distressing interlude has delayed the implementation
of life-saving measures to halt the spread of HIV and to curtail
its effects, then history will not judge this comment excessive.
At
the international level, too, there has been largely frustration
and disappointment. At the launch of the International Partnership
against AIDS in Africa in December 1999, UN Secretary-General
Kofi Annan made the important acknowledgementthat "[o]ur response
so far has failed Africa." The scale of the crisis, he said, required
"a comprehensive and coordinated strategy" between governments,
intergovernmental bodies, community groups, science, and private
corporations.23 That was seven long months ago. In those seven
months, there have been more than 200 days-days in which people
have fallen sick and others have died; days on each of which,
in South Africa, approximately 1700 people have become newly infected
with HIV.
In
that time, the World Bank, to its credit, has made the search
for an AIDS vaccine one of its priorities.24 President Clinton,
to his credit, in an effort "to promote access to essential medicines,"
has issued an executive order that loosens the patent and trade
throttles around the necks of African governments.25 And UNAIDS,
to its credit, has begun what it describes as "a new dialogue"
with five of the biggest pharmaceutical companies. The purpose
is "to find ways to broaden access to care and treatment, while
ensuring rational, affordable, safe and effective use of drugs
for HIV/AIDS-related illnesses."26 All these efforts are indisputably
commendable. But, taken individually or together, they fail to
muster the urgency and sense of purpose appropriate to an emergency
room where a patient is dying. In fact, the analogy is understated,
since the patients who are dying number in the tens of millions.
And for all their families and loved ones, the emergency is dire
and immediate. What is more, the treatment that can save them
exists. What is needed is only that it be made accessible to them.
Bedeviling much of the debate about the options for practical
action is the pivotal question of drug pricing. No one denies
that drug prices are "only one among many obstacles to access"
in poor countries.27 But there are many, many persons in the resource-poor
world for whom prices on their own are, right now, the sole impediment
to health and well-being. A significant number of Africans have
access to health care and could pay modest amounts for the drugs
now. In any scenario, therefore, lowering drug prices immediately
is necessary. It should therefore be an immediate and overriding
priority.
In
fact, lower drug prices are not just one of a range of adjunct
conditions. They are an indispensable precondition to creating
just and practicable access to care and treatment, for a number
of reasons. First, the debate about drug pricing has diverted
attention and energy from other vital challenges, such as creating
the institutional infrastructure for delivery of drugs and monitoring
patients' compliance with their drug regimens, as well as their
response to the drugs, in poor countries. Second, and more crucially,
it has sadly provided some governments with a justification for
delaying implementation of programs to prevent mother-to-child
transmission of the virus.28 It has also delayed consideration
of more ambitious alternatives in antiretroviral therapy.
This situation has led corporations and governments into a sort
of collusive paralysis, in which reciprocal blaming continues
to provide each side with an excuse for inaction. Amid all of
this, it is hard to avoid the impression that the drug companies
are shadow-boxing with the issues.29 In this country, persons
living with AIDS have felt devastated by the lack of immediate
follow-through to the announcement eight weeks ago that five of
the largest drug companies had undertaken to explore ways to reduce
their prices.
In
this context, it is also hard to avoid the conclusion that UNAIDS--whose
program leader, Dr. Peter Piot, is a perceptive man of principle
who worked with Jonathan Mann in Africa--has failed to muster
its institutional power with sufficient resourcefulness, sufficient
creativity, and sufficient force.30
Amid
this disappointment, it is quite wrong to speak, as the title
of my lecture does, of "the deafening silence of AIDS." Gugu Dlamini
was not silent. She paid with her life for speaking out about
her HIV status. But she was not silent. And her death has failed
to silence many other South Africans living with AIDS, black and
white, male and female--most who are less protected by privilege
than I--who have spoken out for dignity and justice in the epidemic.
In
the supposed silence, the trumpet of principled activism has also
been sounded. In America, brave activists changed the course of
presidential politics by challenging Vice-President Gore's stand
on drug pricing and trade protection. Their actions paved the
way for subsequent revisions of President Clinton's approach to
the drug pricing issue.31 In my own country, a small and under-funded
group of activists in the Treatment Action Campaign, under the
leadership of Zackie Achmat, has emerged. In the face of considerable
isolation and hostility, they have succeeded in reordering our
national debate about AIDS. And they have focused national attention
on the imperative issues of poverty, collective action, and drug
access. In doing so they have energized a dispirited PWA movement
with the dignity of self-assertion, and renewed within it the
faith that by action we can secure justice.
In
the last years of his life, Jonathan Mann began speaking with
increasing passion about the moral imperatives to action that
challenge us all.32 He well understood that this involves confronting
vested interests: "Preventing preventable illness, disability
and premature death, like preventing human rights abuses and genocide,
to the extent that it involves protecting the vulnerable, must
be understood as a challenge to the political and societal status
quo."33 Mann's last work also underscored the fundamental significance
of human dignity in the debate about health and human rights and
foreshadowed the transition of the debate about human rights and
the "HIV paradox" to a conception of a full human entitlement
to medical care, where the means for it are available.34
Ten
months before his death, in November 1997, Mann called on an audience
to place themselves "squarely on the side of those who intervene
in the present, because they believe that the future can be different."35
That is the true challenge to this conference: to make the future
different. Drugs are available to make AIDS a chronically manageable
disease for most people with the virus. But unless we intervene
in the present with immediate urgency, that will not happen.
We
gather here in Durban as an international grouping of influential
and knowledgeable people concerned about alleviating the effects
of this epidemic. By our mere presence here, we identify ourselves
as the 11,000 best-resourced and most powerful people in the epidemic.
By our action and resolutions and collective will, we can make
the future different for many millions of people with AIDS and
HIV for whom the present offers only illness and death.
This
gathering can address the drug companies. It can demand urgent
and immediate price reductions for resource-poor countries. It
can challenge the companies to permit without delay parallel imports
and the manufacture under license of drugs for which they hold
the patents. Corporately and individually we can address the governments
and intergovernmental organizations of the world, demanding a
plan of crisis intervention that will see treatments provided
under managed conditions to those who need them. The Vancouver
conference four years ago was a turning point in the announcement
of the existence of successful drug therapies. This conference
can be a turning point in the creation of an international impetus
to secure equitable access to these drugs for all persons with
AIDS in the world.
Moral dilemmas are all too easy to analyze in retrospect. It is
often a source of puzzled reflection how ordinary Germans could
have tolerated the moral iniquity that was Nazism, or how white
South Africans could have countenanced the evils that apartheid
inflicted, to their benefit, on the majority of their fellows.36
Yet the position of persons living with AIDS or HIV in Africa
and other resource-poor regions poses a comparable moral dilemma
for the developed world today. The inequities of drug access,
pricing, and distribution mirror the inequities of a world trade
system that weighs the poor with debt while privileging the wealthy
with inexpensive raw materials and labor. Those of us who live
affluent lives, well-attended by medical care and treatment, should
not ask how Germans or white South Africans could tolerate living
in proximity to moral evil. We do so ourselves today, in proximity
to the impending illness and death of many millions of people
with AIDS. This will happen, unless we change the present. It
will happen because available treatments are denied to those who
need them for the sake of aggregating corporate wealth for shareholders
who by African standards are already unimaginably affluent.37
That
cannot be right, and it cannot be allowed to happen. No more than
Germans in the Nazi era, nor more than white South Africans during
apartheid, can we at this conference say that we bear no responsibility
for more than 30 million people in resource-poor countries who
face death from AIDS unless medical care and treatment is made
accessible and available to them. The world has become a single
sphere, in which communication, finance, trade, and travel occur
within a single entity. How we live our lives affects how others
live theirs. We cannot wall off the plight of those whose lives
are proximate to our own. That is Mann's legacy to the world of
AIDS policy, and it is the challenge of his memory to this conference
today.
References
1.
Almost a third of the items on Mann's formidable list of 169 publications
appear to stem from his 27 months in Africa.
2.
J. M. Mann et al., "Prevalence of HTLV-III/LAV in Household Contacts
of Patients with Confirmed AIDS and Controls in Kinshasa, Zaire,"
Journal of the American Medical Association 1986, 256: 721-724;
J. M. Mann et al., "HIV Seroprevalence among Hospital Workers
in Kinshasa, Zaire: Lack of Association with Occupational Exposure,"
Journal of the American Medical Association 1986, 256: 3099-3102;
J. M. Mann et al., "HIV Sero-Incidence in a Hospital Worker Population:
Kinshasa, Zaire," Annales de la Société Belge de Médecine Tropicale
1986, 66(3): 245-50; J. M. Mann et al., "Zaire: Non-Sexual Household
Transmission of AIDS," Journal of the American Medical Association
1986, 256: 3091-92; and B. Ngaly, R. W. Ryder, K. Dila, K. Mwandagalirwa,
J. M. Mann et al., "Human Immunodeficiency Virus Infection among
Employees in an African Hospital," New England Journal of Medicine
1988, 319: 1123-27. See also R. Marcus, K. Kay, and J. M. Mann,
"Transmission of Human Immunodeficiency Virus (HIV) in Healthcare
Settings World-Wide," Bulletin of the World Health Organization
1989, 67(5): 577-82. This work both confirmed earlier studies
to which it referred and anticipated the later conclusive studies
in North America: J. L. Gerberding et al., "Risk of Exposure of
Surgical Personnel to Patients' Blood during Surgery at San Francisco
General Hospital," New England Journal of Medicine 1990, 322:
1788-93; R. M. Gershon and D. Vlahov, "HIV Infection Risk to Health-Care
Workers," American Industrial Hygiene Association Journal 1990,
51: A-802-A-806; J. Jagger et al., "Rates of Needle-Stick Injury
Caused by Various Devices in a University Hospital," New England
Journal of Medicine 1988, 319: 284-88; R. Marcus et al., "Surveillance
of Health Care Workers Exposed to Blood from Patients Infected
with the Human Immunodeficiency Virus" New England Journal of
Medicine 1988, 319: 1118-23; and J. M. Orient, "Assessing the
Risk of Occupational Acquisition of the Human Immunodeficiency
Virus: Implications for Hospital Policy," Southern Medical Journal
1990, 83: 1121-27.
3.
J. M. Mann et al., "Surveillance for AIDS in a Central African
City: Kinshasa, Zaire," Journal of the American Medical Association
1986, 255: 3255-59; T. C. Quinn, J. M. Mann, P. Piot, and J. W.
Curran, "AIDS in Africa: An Epidemiological Paradigm," Science
1986, 234: 955-63; J. M. Mann, "The Epidemiology of LAV/HTLV-III
in Africa," Annals of the Institute Pasteur/Virology 1987, 138:
113-18; J. M. Mann et al., "ELISA Readers and HIV Antibody Testing
in Developing Countries," Lancet 1986, i: 1504; H. Francis, J.
M. Mann, et al., "Serodiagnosis of the Acquired Immunodeficiency
Syndrome by Enzyme-Linked Immunosorbent Assay Compared to Cellular
Immunologic Parameters in African AIDS Patients and Controls,"
American Journal of Tropical Medicine & Hygiene 1988, 38: 641-46;
K. Kayembe, J. M. Mann, et al., "Prevalence of Anti-HIV Antibodies
in Patients without AIDS or AIDS-Related Syndrome in Kinshasa,
Zaire," Annales de la Société Belge de Médecine Tropicale 1986,
66: 343-47; R. Colebunders, J. M. Mann, et al., "Evaluation of
a Clinical Case-Definition of Acquired Immunodeficiency Syndrome
in Africa," Lancet 1987, i: 492-94; R. Colebunders, H. Francis,
J. M. Mann, et al., "Persistent Diarrhea, Strongly Associated
with HIV Infection in Kinshasa, Zaire," American Journal of Gastroenterology
1987, 82: 859-64; R. Colebunders, J. M. Mann, et al., "Slow Progression
of Illness Occasionally Occurs in HIV Infected Africans," AIDS
1987, 1: 65-66; J. M. Mann et al., "Condom Use and HIV Infection
among Prostitutes in Zaire," New England Journal of Medicine 1987,
316: 345; Mann et al., "Human Immunodeficiency Viral Infection
and Associated Risk Factors in Female Prostitutes in Kinshasa,
Zaire," AIDS 1988, 2: 249-54; and S. Z. Wiktor, J. M. Mann, et
al., "Human T-cell Lymphotropic Virus Type 1 (HTLV-1) among Female
Prostitutes in Kinshasa, Zaire," Journal of Infectious Diseases
1990, 161: 1073-76.
4. J. M. Mann et al., "Association between HTLV-III/LAV Infection
and Tuberculosis in Zaire," Journal of the American Medical Association
1986, 256: 346; G. Slutkin, J. Leowski, J. M. Mann et al., "The
Effects of the AIDS Epidemic on the Tuberculosis Problem and Tuberculosis
Programmes," in: A. F. Fleming, M. Carballo, and D. W. Fitzsimons
(eds.), The Global Impact of AIDS (London: Alan R. Liss, Inc.,
1988), pp. 21-25; and G. Slutkin, J. Leowski, and J. M. Mann,
"Tuberculosis and AIDS," Bulletin of the International Union against
Tuberculosis and Lung Disease 1988, 63: 21-24 [noting the increased
rate of progression from asymptomatic to overt TB for persons
co-infected with HIV].
5.
J. M. Mann et al., "HIV Seroprevalence in Pediatric Patients 2-14
Years of Age at Mama Yemo Hospital, Kinshasa, Zaire," Pediatrics
1986, 78: 673-77; J. M. Mann et al., "Risk Factors for Human Immunodeficiency
Virus Seropositivity among Children 1-24 Months Old in Kinshasa,
Zaire," Lancet 1986, i: 654-57; C. F. von Reyn, C. J. Clements,
and J. M. Mann, "Human Immunodeficiency Virus Infection and Routine
Childhood Immunization," Lancet 1987, ii: 669-72; P. Nguyen-Dinh,
A. E. Greenberg, J. M. Mann, et al., "Absence of Association between
Plasmodium Falciparum Malaria and Human Immunodeficiency Virus
Infection in Children in Kinshasa, Zaire," Bulletin of the World
Health Organization 1987, 65: 607-13; C. F. von Reyn, J. M. Mann,
et al., "HIV Infection and Routine Childhood Immunization: A Review,"
Bulletin of the World Health Organization 1987, 65: 905-11; A.
E. Greenberg, P. Nguyen-Dinh, J. M. Mann, et al., "The Association
between Malaria, Blood Transfusions and HIV Seropositivity in
a Pediatric Population in Kinshasa, Zaire," Journal of the American
Medical Association 1988, 259: 545-49; J. Chin, G. Sankran, and
J. M. Mann, "Mother-to-Infant Transmission of HIV: An Increasing
Global Problem," in: E. Kessel and S. K. Awan (eds.), Maternal
and Child Care in Developing Countries (Thun, Switzerland: Ott,
1989), pp. 299-306; and R. W. Ryder, W. Nsa, S. E. Hassig, J.
M. Mann, et al., "Perinatal Transmission of the Human Immunodeficiency
Virus in 482 Infants Born to Seropositive Women in Two Hospitals
in Zaire," New England Journal of Medicine 1989, 320: 1637-42.
6.
L. Gostin and V. Lazzarini (eds.), Human Rights and Public Health
in the AIDS Epidemic (1997), p. 167.
7.
J. M. Mann and D. Tarantola (eds.), AIDS in the World II (New
York: Oxford, 1996), p. 464. See also J. Mann, "Health and Human
Rights: If Not Now, When?" Health and Human Rights 1997, 2(3):
113-20.
8.
J. Mann, L. Gostin, S. Gruskin, et al., "Health and Human Rights,"
Health and Human Rights 1994, 1(1): 19.
9.
M. Kirby, "AIDS and the Law," South African Journal on Human Rights
1993, 9(1): 1-21. In a moving tribute, Kirby credits Mann, among
others, with inspiring his own realization in this regard: see
M. Kirby, "The Right to Health Fifty Years On: Still Skeptical?"
Health and Human Rights 1999, 4(1): 17.
10.
This recognition lies at the core of the most important international
human rights policy response to HIV/AIDS the epidemic has yet
produced: HIV/AIDS and Human Rights: International Guidelines,
produced at the Second International Consultation on HIV/AIDS
and Human Rights, Geneva, September 23-25, 1996 (New York: United
Nations, 1998). The Guidelines, formulated and issued under the
aegis of UNAIDS and the Office of the High Commissioner for Human
Rights, were adopted by the Commission on Human Rights on January
20, 1997. They reflect the drafters' recognition that protection
of human rights is essential not only to safeguard human dignity
in the context of HIV/AIDS, but to ensure an effective, rights-based
response to the epidemic. Most fundamentally, they embody the
assertion that public health interests do not conflict with human
rights ("Introduction" to the published Guidelines, para. 15).
11.
This is not to discountenance the questions raised about "AIDS
exceptionalism." See R. Bayer, "Public Health Policy and the AIDS
Epidemic: An End to AIDS Exceptionalism?" New England Journal
of Medicine 1991, 324: 1500, answered by S. Burris, "Public Health,
AIDS Exceptionalism and the Law," John Marshall Law Review 1994,
27: 251. That debate, however, is ancillary because Bayer's approach
does not seem intended to suggest, and does not unavoidably entail,
human rights curtailments.
12.
Gugu Dlamini was a young activist living with HIV in a township
near Durban who on World AIDS Day 1998 publicly announced her
HIV status. Three weeks later a group of fellow residents attacked
and killed her, partly, it is believed, as a result of her statement.
An inquest into her death is at present still pending.
13.
UNAIDS released updated statistics on June 27, 2000, available
from UNAIDS at http://www.unaids.org.
14.
For South Africa, see The Impending Catastrophe: A Resource Book
on the Emerging HIV/AIDS Epidemic in South Africa (Menlo Park,
CA: Henry J. Kaiser Family Foundation, 2000).
15.
See Médecins Sans Frontières, "HIV/AIDS Medicines Pricing Report.
Setting Objectives: Is There a Political Will?" (MSF, 2000) and
available from Médecins Sans Frontières at www.accessmed-msf.org.
16.
For a general critique, see M. Angell, "The Pharmaceutical Industry:
To Whom Is It Accountable?" [editorial], New England Journal of
Medicine 2000, 342 (25).
17.
An audio clip of the speech is available from The Village Voice
at http://www.villagevoice.com/issues/9837/schoofs-mann.ram.
In 1992, Mann and others commented on AZT and drug development
to deal with the AIDS crisis: A logical outcome of the successes
of AIDS activism in the industrialized world . . . will be to
connect issues and struggles in the developing and industrialized
countries. . . . [A]ccess to AZT, other antiretroviral agents
and drugs to treat opportunistic infections [is] extremely limited
or totally absent in the developing world. J. Mann, D. J. M. Tarantola,
and T. W. Netter (eds.), AIDS in the World: A Global Report (Cambridge,
MA: Harvard University Press, 1992), p. 240.
18.
Mann called on physicians in America to make "a commitment to
challenge the status quo of health as a purchasable privilege"
in Healthcare and Human Rights, presented at the First International
Conference on Healthcare Resource Allocation for HIV/AIDS and
Other Life-Threatening Illnesses, Washington, DC, November 1997,
available from IAPAC at http://www.iapac.org/humanrights/witness2.html.
19.
The evidence is critically overviewed in H. Marais, To the Edge:
AIDS Review 2000 (University of Pretoria, 2000). See also my keynote
address to a meeting of persons living with AIDS, titled "Involvement
of People Living with HIV/AIDS: How to Make It More Meaningful"
and convened as a precursor to the XIII International AIDS Conference,
Durban, South Africa, March 9, 2000.
20.
N. Soderlund, K. Zwi, A. Kinghorn, and G. Gray, "Preventing Vertical
Transmission of HIV: A Cost Effectiveness Analysis of Options
Available in South Africa," British Medical Journal 1999, 318:
1650-55.
21.
See President Thabo Mbeki, "Sitting Down with President Mbeki,"
interview by Joan Shenton, Carte Blanche, 16 April 2000, available
from Carte Blanche at www.ktv.co.za/carteblanche/week/000416_mbeki.jhtml;
President Mbeki to President Clinton and other leaders, published
in The Washington Post, 19 April 2000. For comment, see R. Bayer
and M. Susser, "In South Africa, AIDS and a Dangerous Denial,"
Washington Post 20 April 2000; M. Berger, "Mbeki's AIDS Letter
Defies Belief," Mail & Guardian (Johannesburg), 28 April 2000;
A. C. Bawa, D. Herwitz, and H. Coovadia, "Leave Science to the
Scientists, Mr President," Sunday Independent (Johannesburg),
25 June 2000; and the following ministerial defense: M. Tshabalala-Msimang,
B. Ngubane, and E. Pahad, "Mbeki's Stand on AIDS Was Dictated
by African Realities," Sunday Independent (Johannesburg), 2 July
2000.
22.
Dr. Mamphela Rampele is a former vice-chancellor of the University
of Cape Town; she is now a deputy president of the World Bank.
She was quoted in M. Schoofs, "Flirting with Pseudo-Science,"
Village Voice, 15 March 2000.
23.
United Nations Press Release SG/SM/7247, posted by UNAIDS on 9
December 1999 at www.unaids.un.org/news/press/docs/1999.
24.
J. Burgess, "AIDS Measures Top World Bank's Agenda," Washington
Post, 13 April 2000.
25.
William J. Clinton, Executive Order: Access to HIV/AIDS Drugs
and IP/Trade Issues, 10 May 2000, available from HivNet.ch at
www.hivnet.ch:8000/topics/treatment-access/viewR?816.
26.
UNAIDS, "New Public/Private Sector Effort Initiated to Accelerate
Access to HIV/AIDS CARE and Treatment in Developing Countries"
[press release], 11 May 2000, available from UNAIDS at http://www.unaids.org/whatsnew/press/eng/geneva110500.html.
27.
Glaxo Wellcome, "Glaxo Wellcome with Four Other Pharmaceutical
Companies Partner with United Nations Agencies in Public/Private
Cooperation to Accelerate Access to HIV/AIDS Care and Treatment
in Developing Countries" [press release], 11 May 2000, available
from HivNet.ch at http://www.hivnet.ch:8000/africa/af-aids/viewR?783.
28.
"Mbeki, AIDS and the Intolerance of the Media" [statement], 24
March 2000, accessed at www.woza.co.za/news/mar00/
aidsmbeki24.htm. The statement reads in part, "Mbeki's dilemma
is compounded by the fact that he does not have the option to
dispense AZT to people because it is simply unaffordable. Not
only is AZT not a cure for HIV/AIDS, but also it has been proven
to be ineffective unless it is used together with other drugs."
Contemporary news reports indicated that the statement was issued
by Mr. Parks Mankahlana, a spokesman in the Office of the Presidency;
see "Mbeki Hits at AIDS 'Intolerance,'" Citizen, 24 March 2000.
29.
For stringent criticism of the arguments employed by drug companies
to justify their pricing structures and their monopolies, see
Angell (note 16).
30.
See the perceptive analysis and critique by Dr. Richard Stern,
"UNAIDS and HIV Drugs: A Call for Renewed Commitment to Advocacy,"
posted to the Treatment-Access e-mail list and available at http://www.hivnet.ch:8000/topics/treatment-access/viewR?672.
31.
President Clinton changed his position during the November 1999
meeting of the World Trade Organization in Seattle and confirmed
the change in an executive order of 10 May 2000 (see note 24).
32.
In his closing address at the 2nd International Conference on
Health and Human Rights, Cambridge, MA, October 5, 1996, he underscored
the need to "move from concepts to action in health and human
rights." Mann (see note 7), p. 116.
33.
Mann (see note 7), p. 117.
34.
J. Mann, "Dignity and Health: The UDHR's Revolutionary First Article,"
Health and Human Rights 1998, 3(2): 30-38. In South Africa, Justice
Arthur Chaskalson's Bram Fischer Memorial Lecture, "Dignity as
an Underlying Value in the Constitution," delivered in Johannesburg
on 18 May 2000, recently explored the conception of dignity as
a value underlying other constitutional values.
35.
Mann (see note 18).
36.
On Nazi Germany, see G. Sereny, Albert Speer: His Battle With
Truth (New York: Knopf, 1995), and D. Goldhagen, Hitler's Willing
Executioners: Ordinary Germans and the Holocaust (New York: Knopf,
1996). On South Africa under apartheid, see Antjie Krog, Country
of My Skull: Guilt, Sorrow, and the Limits of Forgiveness in the
New South Africa (Johannesburg: Random House, 1999).
37. A South African clergyman has tellingly translated the drug
companies' arguments relying on research and development costs
as follows: "In plain English it means: we cannot offer you the
life-saving drugs now because we need profit to develop future
life-saving drugs-those drugs will also be unaffordable!" The
Very Reverend Rowan Smith, "An Ethical Response to the AZT Debate,"
Cape Times (Cape Town), 30 April 1999.
About
the Author
Mr.
Justice Edwin Cameron is a Justice of the High Court of South
Africa. Please address correspondence to Mr. Justice Edwin Cameron,
Judges' Chambers, High Court of South Africa, Cr Pritchard & Kruis
Streets, Private Bag X7, 0001 Johannesburg, South Africa.
This
is an edited version of the first Jonathan Mann Memorial Lecture,
given by Justice Cameron at the XIIIth International AIDS Conference,
Durban, South Africa, on July 10, 2000.