Life, Health and Justice in the AIDS Epidemic
It is a very particular pleasure and an honor to be speaking at GMHC. Summer in New York City is a wonderful time. But, for the gay men of this city, the summer of 1981 was not. It was a time of disquiet, alarm, panic and increasing horror as the realization spread that a new disease was affecting growing numbers of the community. If we travel back over twenty years to August 1981, when Larry Kramer hosted the first meeting that lead to the founding of GMHC, it is hard to imagine the sense of devastation that beset the founders of this organization. The bodies of gay men were being marked and crippled and crumpled by a new syndrome.
What was more, their infirmity and death seemed to threaten the life of the gay body politic itself. All that the boisterous ascendance of gay liberation had attained since the late 1960s seemed at peril. Not only were gay men themselves threatened with debility and death on an as yet unknowable scale, but the new disease portended public opprobrium, fear and revitalized hatred and prejudice of fearful dimensions. The notion of homosexuality as a contamination, a disease, a sinful abomination punished by nature and the deity, seemed to have received conclusive microbial and epidemiological support.
It was the challenges arising from this stark and frightening situation that GMHC was created to meet. GMHC was founded on certain signal moral premises and practical insights. They were that:
GMHC was therefore born from practical necessity. But however dire the situation its founders faced, its objectives were bathed in hope. Activism in its essence implies a recognition that the world is wrong and, together with that, a determination to change it. More importantly, activism is premised on a belief in our own and others' capacity to change what is wrong. It is this belief that makes many activists inspiring, and it is their conduct in pursuit of that belief that gives us hope.
So it was, and so it still is, with GMHC. Activism lies at the core of GMHC's commitment in the AIDS epidemic over the last twenty years. And it is the tradition of principled activism that must lie at the core of our response to the epidemic in the next twenty years.
There have been fundamental changes since those dark days of 1981. AIDS no longer is what it seemed then, a "gay plague." It is a heterosexual "plague" that passes over cultures and continents and sexuality and age and gender. Overwhelmingly, today, the most brutal impact of AIDS is felt amongst the poor populations of Africa and elsewhere in the third world.
The current demography of the epidemic is increasingly reflected in a small mirror within North America itself, where poor and relatively marginalized inner-city communities, mostly black, account for an unsettling preponderance of new infections(1); and it is to be noted that GMHC, true to its activist roots, has confronted this demographic change directly and truthfully. It has transformed itself from a sectoral organization serving an embattled gay, mainly-white community, to a cross-sectoral organization serving embattled, deprived and marginalized communities regardless of gender and color and orientation.
I said "a small mirror." That is because by any standard the preponderant reality of this epidemic is now located in Africa. New Yorkers who have died of AIDS number about 70-75,000. That is about one-fifth or one-sixth of the total number of Americans -- some 448,060(2) -- who have died of AIDS. In the whole of North America there are estimated to be fewer than one million people living with HIV and AIDS, with about 40,000 new infections per year.(3)
Dismaying as these figures are, the bigger epidemiological picture dwarfs them. UNAIDS estimates that, worldwide, 22 million people have already died of AIDS. This makes AIDS, in the simple words of Dr. Anthony Fauci, "one of the most destructive microbial scourges in history." As the Harvard Consensus Statement of March 2001 put it, AIDS is "the worst worldwide pandemic in 600 years."(4)
The problem with AIDS in Africa has always been one of scale. The figures numb comprehension. The statistics of death, debility, of orphans, professionals, mothers, rural workers, infants, pregnant women, the projections of economic decline and industrial losses and systemic collapse, threaten to overwhelm our capacity for sympathetic imagination. At the end of 2000, a national antenatal clinic HIV sero-survey in my country showed that 24.5% of pregnant women presenting for treatment at HIV clinics were infected with HIV. In the Manzini district of Swaziland, a small neighbor of South Africa, the prevalence was 41.0%. These figures reflect an agonizing reality throughout Central and Southern Africa(5), where more than two-thirds of the world's estimated 36-38 million persons with HIV/AIDS live. Nearly 10 million children in Africa have been orphaned by AIDS. My country has the world's highest population of people with HIV/AIDS -- nearly 5 million, including nearly 20% of the population between 15 and 45. Last year alone it was estimated that 350,000 South Africans died of AIDS.
If Larry Kramer could term AIDS in America a "holocaust"(6), then the situation elsewhere defies the capacity of language to describe it.
Just as the known demography of the epidemic was shifting from the gay communities of the white north to the black communities of sub-Saharan Africa, a second change came about. It was even more momentous than the first. It was the breakthrough in medical treatment, heralded in December 1995 when the Food and Drug Administration licensed protease inhibitors for the first time.(7) Medical science at last seemed resurgent; and real hope arose that HIV infection could be treated and contained and possibly even defeated in the longer run.
The new drugs are not a miracle. But they are very close to miraculous. They have conferred the gift of life and wellness on many millions with HIV and AIDS who previously faced only the slow degeneration of cancers and infections and fungal outbreaks and weight loss and vital organ collapse that foreshadowed death.
The statistics here are as vivid as those of demography(8) -- sickness and death from AIDS have been reduced dramatically; lives are being saved and quality of living restored; families, couples, communities that faced premature bereavement have been made whole again.
Yet this hope has not reached sub-Saharan Africa and other communities in the developing world. In the midst of hope, a calamity of huge proportions threatens them. For them, the reality of AIDS today is as stark and fearsome and life-depriving as what confronted the gay men of New York City twenty years ago. For the overwhelming majority of poor Africans, AIDS still means stigma, suffering and death. For them treatment remains inaccessible. Death rates are rising. HIV prevalences continue to defy acceptance or belief. Hope is not a word that lies on their tongues.
In my own life I have felt these facts with pressing force. As an affluent white gay man, on a continent where the epidemic most acutely affects poor black heterosexual women, I discovered in the mid-1980s that I was infected with HIV. I experienced the dread, the fear and the self-loathing that internalization of the meaning of infection entails.
I exercised my entitlement to silence because I was terrified of the consequences of disclosure. I fought against stigma and discrimination and for equality and justice in the epidemic. But I did so as a human rights lawyer involved in a larger struggle for justice within my country. As someone who was myself living with HIV I found the prospect of disclosure too daunting.
There were too many battles within myself, within my own mind and my own body, to feel that I had the strength to fight off, also, the prejudice and stigma I feared if I made my status known as someone living with HIV.
The primary battle for me was to try to stay well -- and I hoped, against hope, that I would do so. But, like too many others, my body's own defenses eventually proved ineffectual against the virus. In October 1997 -- twelve years and six months after I was infected -- I fell seriously ill. I had four of the symptomatic markers of AIDS. I felt death in my lungs, death in my mouth, death in my throat and in my limbs and muscles and guts.
But as a relatively affluent professional, on the salary of a judge I could afford to start triple combination therapy. This I did in November 1997. Within weeks, the drugs that I was taking contained and repelled the virus. I started to recover my strength and vitality and life interest. I gained weight. I could exercise again. I could climb the two flights of stairs between the judges' common room and my 8th Floor Chambers in Johannesburg without having to stop, gasping for breath, at every landing.
I experienced, as never before, the awesomely simple and momentous drama of being alive. I have been blessed by good health and vigor these last three and a half years, when, without the drugs, if I had been a statistic on the median of gay men in their mid-40s after the onset of full-blown AIDS, I would have died some time late last year.
I contrasted my affluence and privilege, my protection and support, with that of other South Africans who were poorer than me. One of them, Gugu Dhlamini, disclosed on 1 December 1998 that she was living with HIV. Three weeks later, her fellow township-residents stabbed and stoned her to death. I felt I had to speak publicly about privilege and protection and how these had conferred life on me, when millions of others, no less entitled to life and health than I, faced only debility and death. With the assurance and impetus and energy that a successful drug regimen gave me, I was able to do so in April 1999.
I have therefore been more than a spectator in the debates about drug access and equity in Africa. I have been a beneficiary of the iniquity that gives life to the affluent and the well-connected, and withholds it from the poor and the powerless. As a white and privileged African, I stand in the wind of a world system that deprives poor black Africans of equitable access to global resources and that keeps them impoverished through maintenance of disabling debt burdens.
It is the interplay between these two facts about AIDS -- its demography and its treatment -- that presents the fundamental moral challenge of the next years of the epidemic. Treatment exists that can save people from death by progressive immune system collapse, but it is available only to those rich enough, or who live in countries rich enough, to afford it. In effect, life is being withheld from millions of poor persons because they are poor. This presents a moral iniquity of very significant proportions.
A year ago, this was not a view widely held in governments or international organizations or corporations. In an age of globalization, where corporate profit and corporate control are seen as beacons to international prosperity and growth, it was all too tempting for those living in the affluence of North America and Western Europe to shut themselves off from the reality that AIDS presents to nearly 30 million Africans. All too easily, then, it was assumed that anti-retroviral drugs were and would remain unavailable to poor Africans affected by the epidemic, and that pricing, access and infrastructural impediments were simply unalterable premises in a world with AIDS.
A year after the XIIIth International AIDS Conference in Durban, the debate has undergone fundamental changes. An international consensus has formed that AIDS in sub-Saharan Africa and elsewhere in the developing world is an international crisis. In large measure, the changed perceptions have been the direct product of inventive, determined activism. Courageous activists in my country and North America and elsewhere have confronted pharmaceutical corporations and forced them to make practical commitments to drug availability, price reductions, increased manufacture and devolved licensing and manufacturing arrangements.
There has been no more heartening change in the epidemic than the growing chorus of world and national leaders, strategists and economists(9) and generals and security advisers and businessmen and women, who have begun to recognize that means must be found to bring to those who need them the lifesaving drugs that can halt the damage that HIV does in the human body.
AIDS is now recognized not just as a problem of human suffering or of medical treatment, but as an issue with economic and security implications that affect the entire world. In Washington, the new administration acknowledged promptly that the epidemic poses problem to the national security of the United States.(10)
A number of influential Harvard academics released a detailed statement contending that scientifically monitored treatment for AIDS in poor countries is "feasible, affordable and highly effective." That statement has substantial shortcomings. First, it puts governmental cooperation and commitment as a precondition to the implementation of its plan. That makes people with HIV and AIDS the hostages of their governments' attitudes. Second, the statement does not address critical questions such as the rights of developing countries to initiate compulsory licenses and undertake parallel imports of drugs under World Trade Organization regulations and within their own legal frameworks.(11)
Despite this, the Harvard statement is visionary, powerful and compelling. It represents a critical breakthrough in the debate. It is an authoritative affirmation of the practicability of and necessity for large-scale treatment initiatives to be undertaken in Africa and other poor regions affected by AIDS.
It is hardly coincidental that since the statement's release, the Secretary-General of the United Nations has launched a Global AIDS and Health Fund(12) aimed at garnering U.S. $7-10 million per year to combat disease in poor countries.
But the single most important event has been the dramatic reduction in drug prices achieved over the last 12 months. Through energetic coalitions and campaigns, and assisted by perceptive and well-researched reporting(13), a small group of activists in Africa and North America have turned public opinion. They have shamed the international drug companies into taking significant action to make the drugs whose patents they control more accessible to those who most need them. The result has been that the cost of several combination therapies has come down by 80%.
So the landscape has changed immeasurably. Almost every day seems to bring new good news. Only last week, on Wednesday, June 6, Pfizer announced that it would be making its drug Diflucan available free of charge to the 50 least-developed countries affected by AIDS. Anyone who has ever suffered systemic thrush, and felt the almost immediate relief that Diflucan brings, appreciates the immense humane significance of this offer. That it has been made is almost certainly due to the crusade of the Treatment Action Campaign in South Africa, which launched an international campaign that made it literally intolerable for Pfizer to continue profiteering from Diflucan.
The debate has also moved in other ways. A year ago, prevention of new HIV infections was often counter-poised with treatment of those already infected, as though prevention and treatment were at odds with each other. It is now widely accepted that the dichotomy is false.(14) Physiologically, treatment is a form of prevention. This is most dramatically evident in mother to child prevention programs, where administering drugs to a mother in parturition has a good chance of preventing transmission to her baby. There is also good physiological evidence that an effective course of anti-retroviral medication prevents or substantially inhibits sexual transmission of the virus.
Psychologically treatment also enhances prevention, since it affords those already infected with an incentive to come forward to be tested, to receive counselling, and to engage fruitfully with the complexities of behavior modification. But, third and most important, treatment also enhances prevention socially. By treating people we offer them hope. And by offering hope in this epidemic, we dispel the notion that AIDS spells doom, that confronting it is fraught with failure, and that once infected the subject can face only debilitation and death.
In short, treatment has irreversibly broken the equation between AIDS and death. It allows us to begin to undo the social stigmas and phobias that make prevention so difficult to talk about frankly, and to practice effectively.
So the scene has been set for dramatic and immediate action. And yet actual progress on implementation has been too, too paltry. For those living with and dying from AIDS in Africa, these have been victories without real triumph; movement without any visible progress. The drugs that bring life and restore health and replenish strength remain unavailable to all but an infinitesimal minority of Africans who need them. Price reductions have made them accessible to more; but to most they remain prohibitively expensive.
What I called last year at the Durban AIDS Conference a "collusive paralysis" between drug companies and African governments continues(15), though its form has subtly changed. Governments and corporations blame each other for inaction in the face of a fearsome calamity; and seem rely on each other's default to legitimate their own.
As the shameful unacceptability of high drug pricing has been demonstrated to the world, those who favor inaction have begun to shift their arguments.(16) They now focus on difficulties of providing access, of deficiencies in health infrastructure, of complexities of regimen and compliance and monitoring, and the real possibility of resistant strains of the virus coming to the fore. Problems of drug quality are cited as a reason for not using generic substitutes.
These problems are real. About that there can be no dispute. The question however is not whether they exist, but how we are to tackle them. For too, too many decision-makers in government and the corporate world, these difficulties, substantial as they may be, provide a further excuse to postpone urgent and immediate action.
In my own country, a government that has led the way in human rights observance and in creating humane and just legislative protections for people with HIV and AIDS is still dithering about the most elementary steps to provide drugs for South Africans with HIV. We are the best-resourced nation in Africa, with the most sophisticated health and distributional and medical and scientific infrastructure. Every day, 200 babies are born with HIV in South Africa. Yet we still do not have even a national plan, let alone a national program, to inhibit transmission of the virus from mother to child.
This is an appalling state of affairs; and in it we stand shamed by our smaller and less-populous neighbor, Botswana(17), which already implements at national level anti-retroviral treatment to prevent mother-to-child transmission. And on Wednesday, June 6, 2001, the government of Botswana announced a major scheme to provide anti-retroviral medication in the public sector to people living with HIV and AIDS.
By contrast, in South Africa, even the decision whether to use Nevirapine [Viramune] -- a drug with incontestable efficacy in reducing transmission from parent to child -- has been referred from the governmental agency overseeing drug quality and safety back to the Cabinet. To call this disappointing is inadequate. It is distressing beyond comprehension.
Over all this looms the ambivalence of South Africa's President Mbeki who last year gave public sustenance to discredited theories propounded by those who deny that AIDS exists at all as a virally caused syndrome. In October last year, after 12 months of nurturing dissident beliefs about HIV and AIDS, the President appeared to have backed off his stand. But in a television interview on 24 April 2001, he was asked whether he would take an HIV test. He said No, because that would merely be "setting an example within the context of a particular paradigm." He then went on to reiterate discredited skepticism about what he called "unknown toxicities" involved in administering drugs to people with HIV and AIDS.(18)
That we in South Africa should still be debating what "paradigm" is or should be applicable to the AIDS epidemic represents a national calamity of profound and grievous proportions. As Professor Malegapuru Makgoba, President of South Africa's Medical Research Council, recently stated in the Second James Hill Lecture to the National Institute of Health, Bethesda, Maryland, "Whenever politics takes center stage, manipulates science and scientific truths for its ends, opts for the wrong scientific advice, and erodes the independence and rigor of the scientific methods in any country, the consequences have been dire."
Professor Makgoba has been unflinching in his condemnation of "quackery" and of the apparent succor given to "discredited, pernicious and dissident ideas, unethical practices and unscientific experimentation." He states that "Africa's inability to have a strong science, engineering and technology base can be placed on unwise political choices," and unequivocally sketches out the cost to our country and to the continent of the controversy, inspired by presidential ambiguity and doubt, regarding HIV/AIDS. This cost includes:
Professor Makgoba's warning is uncompromisingly dire: "If, as Africans, we do not heed the implications, history may say we have collaborated in the greatest genocide of our time."
The language of "holocaust" and "genocide" is not inapposite. The moral issues are unambiguously clear, and the imperative to action is unequivocal. Treatment must be provided to Africans with HIV and AIDS. What is at issue is how best to bring this about, and whether we, in this world, have the will and the courage to tackle the solutions that we know are there.
Now that the issue has been identified, the huge scale of the effort involved in tackling it effectively, as with the figures, threatens to overwhelm our capacity for sympathetic imagination and constructive action.
It is in this regard that we must view with scepticism the efforts by some economists and commentators, pharmaceutical executives and even certain African leaders to sketch the difficulties involved as insuperable.(19) The scale of the problem is huge. But that does not suggest inaction. It calls imperatively to intervention now. Studies increasingly show that anti-retroviral medication can feasibly be supplied, accessed, administered and monitored in poor African settings.(20)
There are millions in Africa with AIDS. There are tens and tens and tens of thousands being infected every day -- nearly 2,000 new infections in South Africa alone on every new day. Hundreds of thousands of people in my country are dying of AIDS each year. Every day more people feel sick, begin to lose their strength, feel the stark reach of death beginning to embrace their lungs and muscles and bowels.
Whatever we can do, now, will begin to help some of those people, now. This is not a time for indecision and prevarication. It is not a time for preoccupation with supposedly insuperable difficulties. Nor is it a time for indefinite plan-making. It is -- especially -- not a time for grandiose schemes designed to attain perfection. It is a time for immediate further price reductions from the drug corporations. It is a time for immediate agreement on manufacture of generic substitutes. It is a time for immediate agreements on drug provision in individual African countries. It is a time for immediate funding, on massive scale, of drug access, provision, supervision and monitoring projects. It is a time for immediate implementation of feasible schemes along the lines of that outlined in the Harvard Statement.
The arguments of the skeptics present a classic case of the supposedly "better" being the enemy of the good. It is unlikely that in our lifetimes we will attain perfection in Africa. Let us attain something less than perfection in the lives of enough Africans to save them from death by AIDS.
It is all too easy for us, in retrospect, to condemn other ages who faltered when confronted with moral challenges. Ordinary Germans under the Nazi regime, and white South Africans under apartheid, are two all-too-easy examples. Other examples abound. What of those western countries, including the United Kingdom and the United States, that were reluctant to take Jewish refugees during the 1930s, as Nazi persecution of the Jews started the dire march toward the Final Solution of the death camps? No doubt, the plight of the German Jews was inconvenient. The world economy had barely survived its worst post-agrarian depression. Unemployment in Western Europe and America was still a significant problem. Moral ambiguities seemed to too many to affect the plight of the Jews. And there was too much antipathy amongst informed western leaders to those who were seeking to help them.
What can these complex and painful memories from the not-too-distant past of our own cultures teach us? They can teach us that when a situation calls for our action, we should respond to it with immediacy and with urgency and without temporizing because of supposed difficulties in the way of action.
I am a guest in your country, but you must permit me to say that the USD $200 million that President Bush has offered as the contribution of the United States of America to Secretary-General Kofi Annan's Global AIDS and Health Fund is pitiful indeed. It is like a rich man offering a starving person a penny when the meal that will save his life will cost only a dollar.(21)
The intervention urged in the Harvard Statement envisages as a first objective getting 1 million Africans with AIDS on treatment within three years, reaching a cost of US $1.1 billion annually by year three, and US $3.3 billion by year five. Given the wealth of the nations from whom support for the plan is sought, outlay of this order is readily attainable.(22) It is not a question of resources, but will, and that will must be supplied and reinforced.
It is here that the activist traditions of the gay men of New York City and San Francisco and London and Sydney and Johannesburg can teach those committed to wider justice in the epidemic so much. In the face, twenty years ago, of an unparalleled threat to an emerging and vulnerable community, they banded together. They created strategic alliances. They gave of their energy, their time and their resources. They created community, counselling, advocacy, resource and treatment organizations. They challenged apathy and inaction. They confronted bigotry and hatred. They changed not only the way in which the world viewed AIDS, but the way in which informed opinion now views public health and the treatment of any disease. Ultimately, they changed the way in which gays and lesbians themselves are viewed in society.
GMHC embodies the history of principled activism, strategic alliances, concerted lobbying and individual acts of personal courage through which the gay male populations of twenty years ago countered and eventually contained the deadly threat of AIDS -- even while suffering terrible losses. Those same challenges, even more starkly, face Africa and the developing world today. Courage and activism and international commitment of even more heroic proportions will now be needed.
The problem of AIDS in Africa and the developing world calls us, imperatively and urgently, to a similar commitment to collective action. We who know best what AIDS means in our bodies and in our communities can best impel the western world to take the action it must, in regard to patents, in regard to granting licenses, in regard to provision of drugs, in regard to provision of funding and personnel. We are the heirs of a tradition that dramatized the history of activism itself. Let us apply it, with new vision and new courage, in the world at large.
This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.