HIV/AIDS is the greatest health crisis the world faces today. In two decades, the pandemic has claimed nearly 30 million lives. An estimated 40 million people are now living with HIV/AIDS, 93% of them in developing countries, and 14,000 new infections occur daily.…
There is currently no cure for HIV infection … yet the development of life-saving anti-retroviral drugs has brought new hope.…
Of the 6 million people who currently urgently need anti-retroviral therapy in developing countries, fewer than 8% are receiving it. Without rapid access to properly managed treatment, these millions of women, children and men will die.
WORLD HEALTH ORGANIZATION, TREATING 1 MILLION BY 2005
Who would have predicted that the end of the last millennium would see the emergence of new pathogens and epidemics, when the medical world thought it had it all under control …?
PETER PIOT, NO TIME TO LOSE
A pestilence isn’t a thing made to man’s measure; therefore we tell ourselves that pestilence is a mere bogy of the mind, a bad dream that will pass away. But it doesn’t pass away and, from one bad dream to another, it is men who pass away.…
Dr. Rieux knew … that the plague bacillus never dies or disappears for good … [H]e knew that the tale he had to tell could not be one of a final victory. It could only be the record of what had to be done, and what assuredly would have to be once again in the never ending fight … by all who, while unable to be saints, but refusing to bow down to pestilences, strive their utmost to be healers.
ALBERT CAMUS, THE PLAGUE
In 2000–2001, MSF began to integrate the treatment of HIV/AIDS with anti-retroviral drugs into its programs and to engage in intensive witnessing and advocacy to promote access, at affordable prices, to these medications, which are essential for treating the disease. The decision to do this was not arrived at quickly or easily. It was reached incrementally, movement-wide—preceded and accompanied by great hesitancy, strong resistance, and intense debate about the capacity of MSF to deal with an epidemic of this magnitude, which would entail undertaking the lifelong, intricate care of multitudes afflicted with a complex, chronic, and incurable disease, which was ultimately fatal, and about the feasibility of doing so in the characteristically resource-poor, economically and socially disadvantaged settings in which the disease was especially rampant.
The history of MSF has been coterminous with the global emergence of many new infectious diseases, and the reemergence of numerous old ones.1 None, however, compared with the HIV/AIDS pandemic, which the medical scientist and public-health expert Helen Epstein has judged “the most serious health crisis of our time, and perhaps in all human history.”2 Moreover, MSF was not accustomed to dealing with long-term illnesses. It specialized in what one member called “a medicine of emergency” focused on “rescuing victims of conflict and the wounded of war,” whose symbolic and substantive quintessence was epitomized by “the surgical act”:
Historically, MSF was not ready to battle head-on with AIDS when it occurred during the 1980s. It rapidly set into motion measures to counter the transmissible aspects of the epidemic. But its conception of humanitarian medicine remained rigid, and aspects of prevention and of public health, and therefore of access to care more generally were not yet integrated into it.3
It took a number of converging factors for MSF to break through what it described as its “ideological and sociological impermeability to any form of activism concerning HIV/AIDS,” or even to recognize the potentially revolutionary implications of antiretroviral drugs for its treatment.4
One of these factors was the initiative taken by Paul Cawthorne, a nurse, and David Wilson, a physician, working for MSF in Thailand, which had one of the highest rates of HIV/AIDS in Southeast Asia during the 1990s. Partly because the early cases of HIV/AIDS there occurred primarily among men who had sexual relations with men, and partly because they were a gay couple, Cawthorne and Wilson became involved with the plight of homosexuals afflicted with AIDS. They went on to create a program of home-based care for AIDS patients that emphasized psychological and social support. Then, in collaboration with a network of local NGOs, they tackled issues associated with obtaining antiretroviral drugs and making them accessible to hospital and home patients in their care. Before MSF had decided to pay for antiretroviral treatment, they smuggled a small supply of these drugs into Thailand with the help of a sympathetic airline steward. In 1999, the first AIDS patients were put on treatment; and in 2000, an MSF antiretroviral treatment program was inaugurated.
Cawthorne’s and Wilson’s initiative had an impact on MSF that extended far beyond Thailand. The moment was opportune. Seeing “colleagues and friends” on the national staff of numerous missions “get sick and die from HIV/AIDS without being able to do anything” was an emotional experience, moving MSF members to make changes that enabled MSF to enter the fight against AIDS. As the head of the MSF mission in Rwanda wrote in 2001:
Wednesday, Georges, employed for years by MSF, hospitalized for three weeks without knowing why, telephoned me at the end of the afternoon, and told me in a quivering voice that he finally knew what he had, but did not wish to talk to me about it on the telephone.
The next day around six P.M., the co-med [medical coordinator] and I went to the hospital. I found [Georges] to be as feverish as he was a few days ago, but worse in every respect. He was much thinner, his face was sunken, his expression was sad, and he had difficulty breathing.… The physician in charge of his case confirmed that … Georges had AIDS.…
He is a friend whom I have known for eighteen months. I take his hands because words fail me.… I try to raise his morale, but I don’t have the courage to come up with formulas like “as long as there is life …”
… I have had enough … of seeing my colleagues at work, my friends, waste away and die, while they work in a medical humanitarian organization. He is the fourth one in 12 months. Arthur, dead unexpectedly; Hervé, who took leave after leave, and then, died one week after we learned that he had AIDS; Marc, dead after a month of suffering in our view.… And now Georges who will die soon.… I have had enough. I cannot let Georges die without trying to do something. I feel miserable facing him and the national staff to whom I must say: “No, MSF does not take charge of [antiretroviral] triple therapy for its national staff.” Why? “Because we cannot take care of everyone, we prefer to take care of no one? Because we cannot privilege the national staff in relationship to the population? … Because MSF may not stay in this country, and so should it launch a treatment for life that it cannot ensure? Because it costs a lot? Because, because, because …” This is the discourse that we stick to, and as the [head of mission], I must convey it to the staff, while it revolts me. I understand this medical point of view, cold and sharp as a scalpel. But I cannot accept it! Isn’t the role of a physician to prolong life? To give time to the sick person? It is possible here in this country to prolong Georges’s life with triple therapy, or at least to try. Let’s give him time!5
As it became increasingly clear that countries in sub-Saharan Africa were the most drastically affected by AIDS, the emotional and moral pressure on MSF to confront the epidemic grew greater:
The latest UN AIDS report … gives an idea of the gravity of the situation [wrote Gorik Ooms, who had headed MSF Belgium missions in Burundi and in Mali]. The eight countries of the world most affected by AIDS are in southern Africa: Botswana comes first. If the risk of HIV transmission doesn’t change, 85% of all boys of Botswana aged 15 today will sooner or later die of AIDS. In the year 2020, normally there would be 180,000 inhabitants in Botswana aged 35 to 40 years.
But because of AIDS, there will only be 60,000. Two-thirds of this age group, future farmers, merchants, doctors, nurses, teachers, but most of all parents, will have died. They will have died too young to have raised their children as independent adults, too young to have passed on their knowledge of how to work the land, or their modest businesses, too young to contribute their knowledge and experience fully to their community, too soon to help a next generation to accomplish higher studies. A decapitated society.…
No war, genocide, earthquake, flood or other epidemic has ever had an equally devastating impact on a nation [boldface in original].… Calling AIDS a mega-atomic time-bomb would be an understatement.
“Botswana? Oh well, Botswana. That little country.” In the classification of the countries most affected by AIDS, Botswana is followed by Swaziland, Lesotho, Zambia, South Africa, Namibia, and Malawi. Mozambique comes eleventh, after Kenya and the Central African Republic.…
We’re not talking about a small country, we are talking about a subcontinent. More than a subcontinent, central Africa will follow.
“The year 2020? Oh well. Far away isn’t it?” Sadly, but no, it isn’t.…
Take a deep breath, close your eyes and try to imagine. Imagine this subcontinent as it is today, or rather as it was some years ago, focus on the people aged 35 to 40 years, and wipe half of them away. They will be dead! …
This is the future of southern Africa. This is our future! Our future? Indeed. A medical relief agency that does not massively react against the worst medical tragedy of our times, no longer deserves to exist! A medical relief agency that accepts the challenge will be carried away in a maelstrom of infinite needs. We can choose between denial or a big jump into the maelstrom. There isn’t really a choice, is there?6
Individuals like Gorik Ooms acted as catalysts in impelling MSF to commit to treating AIDS. In the case of MSF Belgium, for example, the volition and the synergistic relationship of Ooms, Alex Parisel, and Eric Goemaere, its executive director, galvanized the section into launching pilot projects offering a full range of treatments for HIV/AIDS and helped forge a common policy integrating the HIV/AIDS programs incipiently developing throughout the movement.7 The HIV/AIDS program that Goemaere inaugurated in the township of Khayelitsha, in Cape Town, South Africa, was pathbreaking. It eventually became an international model for dealing with HIV/AIDS in resource-poor settings. But before it did, obstacles arising from within both MSF and South African society itself had to be surmounted.
From March to August 1999, Eric Goemaere had acted as the senior medical advisor to MSF’s Campaign for Access to Essential Medicines, of which Bernard Pécoul, a member of MSF France, was executive director.8 In concert with Alex Parisel and Francine Matthys, then medical director of MSF Belgium, Pécoul persuaded Goemaere to go to South Africa in August 1999 to explore developing an MSF HIV/AIDS project there. In their view, this undertaking had great symbolic as well as empirical importance, not only because of the enormity of the AIDS epidemic in South Africa, but also because of the obstacles in that country to acknowledging its magnitude and causes, and to obtaining the drugs needed to treat the disease and making them widely available. In Parisel’s opinion, Goemaere, a “man of experience, of the 1968 [radical political] generation,” had the background to appraise the South African situation, which appeared to call for linking advocacy with medical humanitarian action.9
Goemaere arrived in Johannesburg in August 1999 with one suitcase and Lonely Planet’s guidebook South Africa, Lesotho & Swaziland. Lacking a cell phone, he bought one after deplaning. His sole contact in the country was a former member of MSF France who had been a coordinator in South Africa for the assistance to refugees from Mozambique, which MSF had previously provided,10 and had settled in Johannesburg after marrying a woman from Soweto, the city’s most populous black residential area.
Goemaere began his exploration by paying visits to politically liberal physicians at clinics in the township of Alexandra who had fought against apartheid. Although they were interested in working with MSF, they did not have access to zidovudine (or azidothymidine—AZT), one of the first HIV/AIDS drugs approved, which was especially recommended to help prevent the transmission of the virus from mother to child.11 “Naïvely,” Goemaere remembers, “I next went to meet the director of the HIV programs in Pretoria, who blocked me from using any antiretroviral drugs. This was the first sign of a very serious problem.” Subsequently, he made a futile attempt to obtain an appointment with the national minister of health, Dr. Mantombazana (“Manto”) Tshabalala-Msimang, who declined to see him, signaling that she had never heard of MSF. The director for HIV/AIDS in the Health Ministry warned him that although it might be possible for him to proceed with plans to prevent transmission of HIV/AIDS from mother to child, the South African government prohibited his going forward with antiretroviral treatment for persons with AIDS.
Disappointed and discouraged, Goemaere telephoned Parisel at his MSF Belgium director’s office and said the only sensible thing was for him to return to Brussels. At this critical juncture he received a message that led him to cancel his plane reservation for Europe. It was from Zackie Achmat, inviting Gormaere to meet with him in Cape Town.
Achmat was a former African National Congress–associated anti-apartheid activist, an engaged gay rights proponent, and an HIV-positive man. He was the charismatic leader of the Treatment Action Campaign (TAC), which he had founded on International Human Rights Day, December 10, 1998. TAC’s goals included raising consciousness about the scale of the HIV/AIDS epidemic in South Africa and promoting openness about it. Its larger aim was to make treatment universally available. This could only be accomplished by breaking through the “denialist” stance toward AIDS adopted by South Africa’s president, Thabo Mbeki, Minister of Health Tshabalala-Msimang, and the African National Congress (ANC) political party, of which Mbeki was the leader.
In December 1999, TAC was becoming a powerfully effective civil society movement. It was originally composed mainly of middle-class, urban white and “Coloured” members,12 and very few black Africans. But it was beginning to attract young, urban black Africans with a secondary education and poor, unemployed black African women, many of whom were HIV-positive mothers. In January 1999, the Health Department of the Provincial Government of the Western Cape had initiated a program called Prevention of Mother to Child Transmission of HIV/AIDS in Khayelitsha, the poorest and largest township in the metropolitan area of Cape Town, where, out of an estimated population of between 350,000 and 400,000 persons, at least 40,000 adults were HIV-infected. Achmat told Goemaere that TAC was considering introducing treatment with antiretroviral drugs into the program. This ran counter to President Mbeki’s obdurate refusal to recognize the gravity of the AIDS epidemic, or even that AIDS is caused by the human immunodeficiency virus (HIV), the skepticism about the effectiveness of antiretrovirals that he and the members of his government publicly expressed, and their emphasis on the toxicity of these drugs.
Immediately following the Goemaere–Achmat meeting, a tornado hit the Cape Flats. After seeing the devastation that the storm had left in its wake in Gugulethu, another Cape Town township, Goemaere telephoned MSF in Brussels to request emergency aid. Within a week, supplies (including five thousand blankets) arrived in Gugulethu, because as he wryly put it, “we are good at that kind of thing.” Goemaere knew that “MSF [did] not dispute obvious emergency interventions,” and so, “in a way,” he later admitted, he had used the tornado to force MSF Belgium’s headquarters in Brussels to “put a foot into the township” in order to “buy [himself] some time to further explore what meaningful work MSF could do there with AIDS.” Neither Goemaere nor MSF was known in Gugulethu, but people were impressed with what he had made happen and began to ask, “Who is this guy?”13
Goemaere began to visit the Khayelitsha township every day. There he “tried to force the door” by speaking with the nurses and the few doctors who staffed its clinics. But he sensed that they had no interest in participating in an MSF HIV/AIDS program. One exception was Dr. Hermann Reuter, a young, white, politically radical activist physician, born in Namibia and raised in South Africa. Reuter was a graduate of the medical school of the University of Stellenbosch in the Western Cape.14 He had been recruited into TAC by Zackie Achmat and worked for TAC in Khayelitsha, where he was distributing condoms and circulating a petition for access to antiretroviral treatment. Both he and Achmat had once belonged to the Trotskyist Marxist Workers’ Tendency of the African National Congress in the anti-apartheid struggle. Reuter said his involvement with HIV/AIDS through TAC gave him a chance to contribute to a movement as vital to the fight for human rights as the anti-apartheid struggle.15
Saadiq Karien, a physician affiliated with the provincial Ministry of Health, introduced Goemaere to the nurse-coordinator in charge of the Khayelitsha clinic where he was working. “I received only a ‘lukewarm’ reception from her,” Goemaere said—adding with self-mocking MSF humor, “I was not welcomed as a savior from death!” “I was a problem for her, not a solution.” She felt that what Goemaere wanted to do would give the overburdened nurses extra work by attracting fatally and inexorably ill AIDS sufferers to the clinic, where they would infect other patients with the disease. In Goemaere’s view, she and most of her nurse-colleagues were “confusing” being HIV-positive with having terminal AIDS, and did not realize how many of their patients were already infected with HIV.16
A poignant indicator of the social isolation Goemaere experienced during this period occurred on December 10, 1999, the day MSF received the Nobel Prize in Oslo. Goemaere was in a shop in Cape Town where he was photocopying some papers. On the store’s overhead television set, he saw an image of James Orbinski delivering the Nobel Prize acceptance speech on behalf of MSF. “Do you know that guy?” the proprietor asked Goemaere, who replied that he did. This was the only person in Cape Town with whom he had an opportunity to speak about MSF receiving the Nobel Peace Prize, or to mention his connection with it.
Goemaere vacillated between feeling very dispirited, on the one hand—as though he was continually “going back to square one”—and on the other, being tenaciously determined to go forward with creating an MSF-supported demonstration program in South Africa. When he traveled back to Brussels in mid-September for a brief visit, he reported to his colleagues that he thought he saw something promising in the contact with Zackie Achmat and TAC, and in the Prevention of Mother to Child Transmission (PMTCT) of HIV/AIDS program that the Western Cape Department of Health had begun in Khayelitsha, which he hoped might provide an opening for an MSF intervention. Although some staff members expressed concern about the political dangers for MSF of close relations with an activist group like TAC, Goemaere was given a “green light” by the Brussels office to proceed. His wife and two children moved to Cape Town at Christmastime in 1999 to join him—a decision that indicated a long-term commitment.
A breakthrough occurred in April 2000 when the Provincial Administration of the Western Cape permitted MSF to open government-run clinics for patients with HIV/AIDS in three of Khayelitsha’s community health centers: Site C, Site B, and Michael Mapongwana (Michael M). Goemaere recruited Hermann Reuter to work as a physician in these clinics. The breakthrough never would have come to pass, Goemaere has testified, without Dr. Fareed Abdullah, who had initiated the Prevention of Mother to Child Transmission (PMTCT) program set up by the Western Cape Health Department in 1999 and directed the HIV/AIDS programs in the province. Among the first to welcome Goemaere to Khayelitsha, he “was key in sealing the [Provincial Government–MSF] agreement.” This took courage, because Abdullah was also an African National Congress branch leader, and his support for the MSF clinics and their conception of dealing with HIV/AIDS was treated as a “sell-out” by the South African presidency. “If anyone, [Abdullah] deserves the credit for making this happen despite national politics,” Goemaere says. Goemaere also had a more passive form of cooperation from the provincial minister of health, whom he described as “a very humble man—a bricklayer by training—who used to say to me, ‘I do not understand much of what you are telling me, but do your job, and I will do mine, and everything will be sorted out.’”17
With relative alacrity, Goemaere was able to move the PMTCT program in the three community health centers into a new phase. This entailed collaborating with the School of Public Health and Family Medicine of the University of Cape Town to design a system for monitoring mothers and children postnatally and developing PMTCT training courses. But instituting a “feasible, affordable, and replicable” model program for AIDS treatment in those primary care clinics proved to be an impediment-ridden process.18 Obtaining AIDS drugs at an affordably low cost and making them available to patients—with the cooperation, rather than the opposition of the multinational pharmaceutical industry and the South African government—called for advocacy. Chiefly in alliance with TAC, the MSF Khayelitsha project joined in public demonstrations and campaigns covered by the media to draw attention to milestone court cases that could make antiretroviral drugs more available, and ultimately universally accessible, in South Africa through its public-health system.
In 1998, the thirty-nine pharmaceutical companies grouped under the South African Pharmaceutical Manufacturers Association (PIASA) had sued the government of South Africa to prevent the implementation of a law to facilitate access to AIDS drugs at a low cost. The companies accused the government of violating patent protections guaranteed by international intellectual property rules. In 2001, in response to the “Drop the Case” press conferences and massive petitions mobilized by TAC, in which the MSF group took part, the pharmaceutical companies withdrew their lawsuit. And along with TAC, MSF also played a role in the South African Constitutional Court’s July 2002 decision in the case of Minister of Health and others v. Treatment Action Campaign and others, which ordered the South African government to make an approved drug for the prevention of mother-to-child transmission of HIV available in the public-health sector, and to set a timetable for the rollout of a national PMTCT program.
The Khayelitsha project’s advocacy was unprecedented in MSF’s history. This was noted in the 2002 “consultancy report” on its operational research activities commissioned by MSF Belgium:
MSF’s antiretroviral care project in Khayelitsha is special in several respects. Whereas a simulation by M. Haacker of the IMF shows that economically speaking, South Africa probably would be able to provide ART nation-wide—if at a generic price level—political authorities have been notoriously resisting the concept of anti-retroviral drug use. In this context, MSF actively campaigns for access to anti-retroviral drugs in alliance with AIDS-activists from the South African Treatment Action Campaign (TAC) and other groups. Never before [has] MSF developed such a direct and sustained political action targeting national and international decision makers. Never before [has] MSF [gotten] in such a close alliance with an activist campaign to achieve this kind of political aim.19
Goemaere was aware of how this advocacy might violate MSF’s commitment to the apolitical principles of independence, impartiality, and neutrality—all the more so because TAC was part of an alliance with the African National Congress, the Congress of South African Trade Unions, and the South African Communist Party. This “raise[d] the question of political solidarity in the humanitarian field,” he realized—“a border that MSF decided never to cross.” He made sure that the relationship maintained with TAC was not “fusional,” and that he recognized that “the mandates” of TAC and MSF were “different.” For example, in the court cases against the government, MSF provided affidavits, but was not among the plaintiffs. And it refrained from being drawn into radical civil-society issues with which TAC was concerned (such as TAC’s anti-eviction and anti-privatization campaigns). “At that time, we considered that MSF did not have added value on these issues, … not being part of South African civil society,” Goemaere explained, and went on to say, “we avoided commenting on the ‘daily news’ to be able to justify, on the other hand, [being] … outspoken when it touched … our expertise field.”20
Nevertheless, the Brussels headquarters of MSF Belgium continued to caution Goemaere about the danger of Khayelitsha’s advocacy becoming politicized. At one point, an expert in health education sent to Khayelitsha by the Brussels office as a consultant drafted a report in which she charged that political intervention in Khayelitsha violated the axial humanitarian principles of MSF’s Charter. Before she delivered the report to MSF Belgium’s Brussels headquarters, Goemaere responded by writing a “counter-summary” to her conclusions, with the help of Hermann Reuter and Colwyn Poole, the local MSF Resource Center coordinator, a Coloured South African, and a TAC activist.
In May 2001, with the agreement of the Western Cape Provincial Department of Health, the MSF program in Khayelitsha began to provide a very small number of AIDS patients with HAART therapy—a three-drug regimen of high-acting antiretroviral drugs: Zidovudine, or azidothymidine (AZT), Lamivudine, and Nevirapine. The MSF group requested the technical assistance of the School of Public Health and Family Medicine at the University of Cape Town to support and evaluate the program.21 The protocol of what was defined as this pilot, operational research project was approved by the Research Ethics Committee of the South African Medical Association. In September, MSF signed an agreement with the Fundação Oswaldo Cruz (Fiocruz), a public research body funded by the Brazilian government, which allowed MSF to purchase the generic forms of these antiretroviral drugs produced by Farmanguinhos, a Fiocruz pharmaceutical laboratory attached to the Brazilian Ministry of Health. In that same month, the South African Medicines Control Council authorized MSF to use the Brazilian generic versions of the antiretroviral drugs; and 177 patients had started antiretroviral/HAART drug therapy by May 2002.22 Using the Brazilian-produced generic drugs reduced the price per patient per day from US$22.00 to US$1.55.23
I decided to make the Khayelitsha program a site of my firsthand field research into MSF. A number of factors influenced this choice. Foremost among them were the location of the program in Africa where such a large proportion of MSF’s projects were situated; the devastating incidence of the HIV/AIDS pandemic in Africa south of the Sahara; the major transition and innovations it required of MSF to prevent and treat this incurable infectious disease; and the plethora of social, cultural, economic, and political issues, as well as the medical challenges, that such a commitment involved.
My professional history also contributed to my going to Khayelitsha—most particularly, the extensive research I had conducted throughout the 1960s and 1970s in Belgium and in the ex-Belgian Congo (later Zaïre, and now the Democratic Republic of Congo).24 As a consequence, I felt a strong, positive identification with Africa; and I hoped that I could bring social and cultural knowledge acquired in another African society that would be relevant to my participant observation in South Africa. In addition, the Khayelitsha program operated under the aegis of MSF Belgium, with which I was familiar, and where I was known because of the professional and public notice that my research there had received. In fact, I had first met Eric Goemaere in Brussels during his term as executive director of MSF Belgium, before he became the head of MSF’s Mission in South Africa. Our acquaintanceship emboldened me to contact him about the possibility of spending some time in Khayelitsha, and it played a role both in the access that he gave me to the program and in his willingness to act as my chief informant within it.
I made three successive trips to Khayelitsha, in 2002, 2003, and again in 2005, which allowed me to witness its HIV/AIDS program in action—how it had evolved from its inception, and how it was continuing to develop. What follows in the next chapter is an account, drawn from my field notes, of what I observed, learned, and experienced in that setting.