Against Despair

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BOOKS DECEMBER 8, 2010

Against Despair

Partner to the Poor: A Paul Farmer Reader
Edited by Haun Saussy
(University of California Press, 660 pp., $27.50)

On a hot August afternoon a decade ago, one of my patients collapsed at a café in Boston. She was in her early sixties and had been treated successfully with chemotherapy and radiation for breast cancer, but had suffered side effects from the intensive therapy, with damage to her heart and lungs. Her husband called 911, and EMTs arrived in short order. She was resuscitated and sped by ambulance to the Brigham and Women’s Hospital. In the emergency room her heart stopped again, and once more she was brought back. After she was transferred to the intensive care unit, doctors placed her on a ventilator and infused medications that stimulated her heart to beat more effectively.

I visited her daily, although I am on the staff of another hospital close by. Her care was complex and demanding. The collapse appeared primarily due to an abnormal heart rhythm, likely precipitated by a myocardial infarction. It was difficult to supply sufficient oxygen through the ventilator because her lungs had been scarred years before from the breast cancer treatment. Over the course of two weeks, she sufficiently improved to leave the ICU and receive care on the medical ward.

On one of my early evening visits, I happened to enter the hospital elevator at the same time as Dr. Paul Farmer. Farmer is most widely known through Tracy Kidder’s Mountains Beyond Mountains: The Quest of Dr. Paul Farmer, a Man Who Would Cure the World. More recently, he was visible on the evening news beside former President Bill Clinton following the Haiti earthquake. Farmer has established health care services not only in Haiti, but also in Siberia, South America, and Africa. In addition to these efforts in global health, he serves as an attending physician in infectious diseases at the Brigham and Women’s Hospital. It was in this capacity that I saw him in the elevator, surrounded by the typical “team” of fellows, residents, and Harvard medical students. Our paths had crossed briefly years earlier during his training, and we exchanged a brief hello before he went back to his thoughts and I to mine.

I suspect he would not have been surprised by what was coursing through my mind, if he had known the reason for my visit to his hospital. I pondered the extreme gulf between the care that my patient received for her cancer and now was receiving in his hospital, and the kind of treatment available to the patients with similarly complex and potentially fatal maladies—AIDS and malaria and multi-drug resistant tuberculosis—whom he sees when abroad. State-of-the-art medicine in Haiti and Rwanda and Siberia, I told myself, was unimaginable.

It is that failure of imagination, Farmer argues repeatedly and cogently in this important collection of his writings, that is the gravest threat to men and women in the developing world. Indeed, failure of imagination condemns many millions to unnecessary disability and ultimately to death. Policy mandarins had convinced physicians such as myself (indeed, virtually all the health professionals I knew), as well as governments and the World Health Organization, that it was too expensive and too logistically difficult to provide modern drugs to the many sick in socially disorganized, politically corrupt, and economically destitute countries. Once this harsh truth was acknowledged, it was futile even to try.

The tyranny of preconceptions pervades Partner to the Poor. The first essay is “Bad Blood, Spoiled Milk: Bodily Fluids as Moral Barometers in Rural Haiti.” Published in 1988, it challenges traditional analysis in medical anthropology that parses the illness experience in certain cultures between the psychological and the biological. Move san, for which a literal English equivalent, Farmer tells us, is “bad blood,” begins as a disorder of the blood, but then may quickly spread throughout the body, affecting the limbs, eyes, skin, head, and uterus. If untreated or unsuccessfully treated, the malady may be fatal. Most affected are pregnant women or nursing mothers; move san is said to be the primary cause of lèt gate, or spoiled milk syndrome. That is, “bad blood” prevents a nursing mother from providing her infant with “good milk.” Farmer comments that “following the suggestion of others who advise that indigenous illness categories first be studied ‘emically,’ from within their cultural context, I will consider the move san/lèt gate complex to be an illness caused by malignant emotions—anger born of interpersonal strife, shock, grief, chronic worry, and other effects perceived as potentially harmful. It is thus not possible to relegate move san to such categories as ‘psychological’ or ‘somatic.’ This stance ... avoids the strictures of a dogmatically ‘medicalized’ anthropology.”

While Farmer refrains from diagnosing such an affliction as exclusively somatic, psychological, or psychosomatic, he examines it as it is experienced and interpreted. “Perhaps what is necessary is a concerted and integrated effort, an anthropology that would seek underlying forms of suffering common to its many aspects (bodily, mental, economic, and so on).... This is not to be mistaken for yet another call for holism. Rather, it is a reminder of the need to connect personal illness meanings with larger political and social systems.”

 

It may seem disjointed at first glance to introduce a book that is a clarion call to arms with the muted anthropological discourse typically reserved for seminars within the academy. But this is an appropriate point of entry, because it strikes the notes that resonate in the essays that follow: the contention that understanding the problems of the poor in different cultures requires living among them with close observation, moving outside of received paradigms, and refraining from hasty categorization of their thought and behavior. Moreover, it is a primary focus on individual suffering that provides the underpinnings of Farmer’s approach to the plight of the many millions who are impoverished and vulnerable to political oppression, racial discrimination, and sexual abuse—what he terms “structural violence.”

Farmer rejects the common belief that individual agency, the ability to make decisions for oneself and then pursue an individual path, has much valence in the “structurally violent” world of rural Haiti, war-torn Rwanda, Siberian prisons, or the shantytowns of Peru. He insists, instead, that illness integrally connects not only the mind and the body of the individual, but also the economics and the political culture of the body politic. This axiom flourishes in the twenty-four subsequent essays that chart the maturation of Farmer’s thinking about how to deliver meaningful care to the impoverished in the developing world.

Farmer currently is the chair of the department of global health and social medicine at Harvard Medical School. His program is surrounded by numerous health care economists and policy planners who view the world in a diametrically opposite way. Although all of these technocrats offer lip service to humanitarianism, their calculations are far afield from the sufferer. Most endorse the model that medicine is a commodity to be priced rather than a fundamental human right to be claimed. As Farmer repeatedly shows, calculating the “cost effectiveness” of care becomes a convenient excuse for failing to provide treatment for those in need. Farmer’s view of health as a universal human right linked to the other rights of men and women has caused leaders in public health to cast him as a deluded dreamer, a naïve neophyte who deserves to be patted on the shoulder for his valiant efforts but is destined to fail.

Farmer rejects this characterization of his views, and in response he accuses the establishment of more than benign neglect. Policy mandarins also are culpable, he believes, because they blame the victim. By portraying the patient as the source of the disease, we in wealthy developed nations take ourselves off the hook. Haun Saussy, a professor of comparative literature at Yale, writes in the introduction to the book that conventional wisdom held that “good medicine was not to be wasted on undeserving people—and rather than adapting to poverty and decrepit infrastructure, or addressing as yet unknown beliefs that might drive patients away from clinics that offered antiretroviral therapy, critics preferred to exile the sufferers to a forest of dubious sociological constructs.”

Farmer is quite familiar with “dubious sociological constructs.” He writes that “in too many policy discussions, the argument that treatment is not cost-effective is largely a means of ending unwelcome discussions about the destitute sick.... A high-ranking official in the U.S. Department of the Treasury once objected to a strategy that would make anti-HIV drugs available on the continent where they are most needed. He is quoted as saying that Africans lack the necessary ‘concept of time,’ implying that the drugs would be ineffective because of the required schedule of administration. Despite the absence of data that support these claims—and much experience to the contrary—they are persuasive within the elite circles where decisions are made that affect the health and fate of millions of the world’s sick.” Those elite circles were satisfied with the half-solutions to HIV of distributing cheap condoms and pamphlets about unsafe sex.

This, of course, was of no benefit to the already sick, but was most helpful in cleansing the conscience of the West. Then there was the lack of paved roads and the climate, the searing African heat and suffocating humidity, which public health planners said limited the ability to deliver medications in intact form. Similarly, in Siberian prisons plagued by multi-drug resistant tuberculosis, the successful administration of treatment was predicted to be impossible because of prisoners’ cavalier attitude about their fates.

 

Farmer’s important book reveals that it is not only the spread of HIV, tuberculosis, and malaria that is fostered by “structural violence.” Other contagious illnesses also batten off the sociology and the economics of developing regions. Farmer presents a chilling story of how the lethal Ebola outbreak in Sudan was “amplified by substandard medical practices.” The nuns who ran the Yambuku Mission Hospital began a busy day by laying out five hypodermic syringes. Owing to the mindset of limited resources, these five syringes were used and re-used on the hundreds of patients who sought care there each day. While the nuns and staff occasionally rinsed the needles in pans of warm water to get rid of the blood, this is hardly a form of sterilization that would be acceptable in any modern Western facility.

And so the Ebola virus simultaneously appeared in fifty-five villages surrounding the hospital, killing first the people who had received injections and then moving rapidly through families. It swept through the Yambuku Hospital nursing staff, and finally through the Belgian nuns. Yet Farmer eschews simplistic explanations, such as that poor nursing practices are themselves the cause of Ebola’s emergence. “In Mobutu’s Zaïre,” he explains, “one’s likelihood of coming into contact with, say, unsterile syringes was inversely proportional to one’s social status there. Local elites and sectors of the expatriate community with access to high-quality biomedical services (namely, the European and American communities and not the Rwandan refugees) were quite unlikely to contract such a disease.... Journalists and novelists wrote best-selling books about small but horrific plagues, which in turn became profitable cinema. Thus, symbolically if not epidemiologically, Ebola spread like wildfire—as a danger potentially without limit. It emerged.”

In several essays Farmer outlines a creative model for addressing HIV and other transmissible pathogens in the context of extreme poverty. In “The Major Infectious Diseases in the World—To Treat or Not to Treat?” (2001), for example, he proposes free voluntary testing and counseling; distribution of medications, along with food and social services; and daily attention by lay health workers recruited from the local area and trained by visiting doctors or nurses. There is no cost to the patient. Such programs were conceived to treat HIV, multi-drug resistant tuberculosis, and malaria.

Farmer’s non-governmental organization, Partners in Health, works under this notion—that the problem in delivering care involves how the services are offered rather than the character or the culture of the patients. When people with HIV are forced to choose between buying medication and feeding their families, the result will be, understandably, the latter rather than the former. But when Partners in Health enrolled patients in an AIDS program where they received medications along with food, so they could miss a day of work which otherwise ordinarily meant a day of hunger, then they reliably showed up for appointments, took their medications, and achieved rates of remission similar to those in Western medical centers.

This kind of success still did not sway the public health establishment, even following the publication of the results from Farmer’s HIV pilot program in Haiti, where fifty-nine of the first sixty patients showed objective clinical improvement, with forty-eight able to resume working and caring for their families; and a weight gain of more than two kilograms within the first three months of therapy in all but two patients; and, in a subset who were directly tested, 86 percent showing no detectable virus in their bloodstream, indicating that drug treatment was effective. One critic said that even with the antiretroviral drugs costing one dollar a day, this far outstripped the per capita health care expenditures in impoverished countries such as South Africa, where it amounts to some twenty-five cents a day. Others begrudgingly agreed with Farmer that access to life-saving medications should be construed as a human right, but while it “may be right in a moral sense ... it is not practical. To advocate the impossible is to put at risk the achievement of more limited objectives.” Human rights are a great moral objective, according to this view, but cost effectiveness dictates that they need not be honored in lieu of delivering modest but affordable types of care. Still others contended that Farmer’s success was impossible to replicate—that it was essentially an artifact of “exceptional circumstances,” which included highly motivated care workers, generous research funding, and substantial resources. None of this, the naysayers asserted, was likely to be realized in other settings.

This collection of Farmer’s writings very persuasively shows that the naysayers were wrong. If you begin with the belief that it is impossible to overcome the daunting obstacles that fill impoverished regions of Haiti, Rwanda, Peru, and Siberia, then you will certainly fail. Self-fulfilling prophecy is widespread in Farmer’s view, a badge of dishonor to be pinned on too many think tanks, governmental agencies, and public health pundits. Farmer has no patience for armchair philosophers who are content to describe the problems of the developing world without demanding solutions that would be seen as fitting in the West.

 

Farmer’s revolution has been waged not merely with words but also with the strategic recruitment of powerful allies, such as Bill Clinton and Anthony S. Fauci, director of the National Institute of Allergy and Infectious Diseases. He convinced them that the prevalent policy of distributing condoms and educating the population about AIDS and its transmission was insufficient. At the turn of the millennium, some five years since the introduction of highly active antiretroviral therapies (HAART), Farmer rejected the marketplace as dictating that these drugs could not be distributed on the basis of need. “The destitute sick generate no perceptible demand in the medical marketplace,” Farmer declares with characteristic fervor. “The most important question facing modern medicine involves human rights. We are witnessing a growing ‘outcome gap.’ Some populations have access to increasingly effective interventions; others are left out in the cold. The more effective the treatment, the greater the injustice meted out to those who do not have access to care.” He noted that in the five years since the development of HAART, AIDS deaths in the United States had dropped precipitously. “For most HIV infected persons, these lifesaving drugs are unavailable. We hear all kinds of excuses. Efforts to treat AIDS and multi-drug resistant tuberculosis in areas such as Africa and Haiti, which lack a health care infrastructure, are dismissed as ‘unsustainable’ or ‘not appropriate technology.’ Antiviral therapy and complex antituberculosis treatments are considered impermissible where market conditions do not support the sale of such medical services, clear evidence of economic imperatives trumping medical concerns.”

This very different way of thinking finally began to filter into the minds of policymakers in the World Health Organization and the American government, owing largely to Farmer’s efforts. In 2003, President Bush initiated the U.S. President’s Emergency Plan For AIDS Relief (PEPFAR). This governmental program was linked to the Global Fund to Fight AIDS, Tuberculosis, and Malaria. To be sure, these programs are not without their problems, and have become increasingly strained in the wake of the worldwide economic downturn. But their success is undeniable. “The landscape has changed in enormous ways,” Farmer observes, “most good, some not so good. Anybody who tells you that PEPFAR and the Global Fund to Fight AIDS, Tuberculosis, and Malaria are just fraught with problems and not worth their salt is clearly not involved in humble service. You go from 2002, when there was not a single international financing agency working to treat AIDS, tuberculosis, and malaria, which were taking six million lives a year, no work even to prevent these diseases or develop new diagnostics—you go from that bleak picture to having these fantastic bilateral or multilateral mechanisms focused on integrating prevention and care.... That has changed the landscape irrevocably. Ever since, it has been impossible for anyone to say, ‘Well, we’ve never had the experience of treating a chronic, lifelong medical condition among the poor, so it can’t be done.’ Now that these countries and agencies have had that experience, they can’t go back. It’s irrevocable.”

In the end, Farmer’s approach to the individual patient, and then to the individual’s family, and then to the individual’s village, could be “scaled up” against all of the doubts that were showered on his work. The Global Fund and the governmental distribution programs were able to provide state-of-the-art treatment regimens to millions who were impoverished in the developing world. That remarkable achievement would not have been possible if the beliefs that had been inculcated in me, and in nearly everyone I know, both professionals and laymen, had prevailed—the view that resources are too constrained, that the exigencies of the marketplace will not allow it, that the systems and infrastructure to distribute drugs are absent, that lay members of the community cannot be reliably trained to serve as effective caregivers. To dispel these dogmas, it required a special kind of imagination sparked in a remote Haitian village where bad blood led to spoiled milk.

Jerome Groopman is the Recanati Professor of Medicine at Harvard University and the author, most recently, of How Doctors Think (Houghton Mifflin Harcourt). This article ran in the December 30, 2010, issue of the magazine.

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posted in: books, books and arts, from the back of the book, boston, africa, south america, haiti, rwanda, bill clinton, haun saussy, paul farmer, tracy kidder, california, harvard, university of california, world health organization

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