Globalization & Eating Disorder, Autism & Inclusion, Feminization of Poverty, Global Health Approaches to HIV/AIDS

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Structural Violence and Clinical Medicine

(2006)

Paul Farmer, Bruce Nizeye, Sara Stulac, and Salmaan Keshavjee

Because of our contact with patients, physicians readily appreciate that large- scale social forces-racism, gender inequality, poverty, political violence, and war, and sometimes the very policies that address them-often determine who falls ill and who has access to care. For practitioners of public health, the social determinants of disease are even harder to disregard. .

Unfortunately, this awareness is seldom translated into formal analytic frame- works that link social analysis to everyday clinical practice. One reason for this gap is that the holy grail of modern medicine remains the search for the molec- ular basis of disease. While the practical yield of such circumscribed inquiry has been enormous, it has led to the increasing "desocialization" of scientific inquiry: a tendency to ask only biological questions about what are in fact bio- social phenomena.!

Biosocial understandings of medical phenomena are urgently needed. All those involved in public health sense this, especially when they serve populations liVing in poverty. Social analysis, however rudimentary, in fact occurs at the bedside, in the clinic, at field sites, and in the margins of the clinical literature. It is to be found, for example, in any significant survey of adherence to therapy for chronic diseases and in studies of what were once termed "social diseases," such as venereal disease and tuberculosis. 2 The emerging phenomenon of acquired resistance to antibiotics-including antibacterial, antiviral, and antiparasitic agents-is perforce a biosocial process, one that began less than a century ago as novel treatments were introduced. Social analysis is heard in discussion of illnesses for which a significant environmental component is believed to exist, such as asthma and lead poisoning.

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Can we speak of the "natural history" of any of these diseases without address- ing the social forces, including racism, pollution, poor housing, and poverty, that shap~ their course in both individuals and populations? When some of those who suffer from a disease have access to diagnosis and care and others do not, is it appropriate to speak of the disease's "natural history"? Does our clinical practice acknowledge what we already know-namely, that social and environmental forces willlimlt the effectiveness of our treatments? Asking these questions needs to be the beginning of a conversation within medicine. and public health, rather than the end of one.

Indeed, the implications of a social analysis of disease extend all the way to the molecular level. Asthma, for example, is widely believed to be epidemic among children living in the urban United States. A survey of national data revealed that black non-Hispanic children had an asthma attack prevalence rate 44 percent higher than that of white non-Hispanic children in 2000;3 other reviews have also confirmed that black children are more likely to be hospitalized and are more likely to die from asthma than their white counterparts.4 Biology alone does not account for asthma's prevalence, and to speak of it in merely biological terms falsifies the problem: a comprehensive discussion cannot occur without reference to environmental allergens, air and housing quality, and access to clinical services. The course of this disease, like that of so many other chronic afflictions, is shaped by social forces well beyond the control of patients and their families. Pediatricians know this, even though they may lack the analytic frameworks (and the professional mandate) required to understand and alter the social determinants of the course of chronic asthma. They can see that housing and immigration policies, limited access to bank loans, and the lack of a national health insurance scheme are somehow related to the distribution and course of asthma in children.

A biosocial approach redefines many of our terms. Are our understandings of real estate and air pollution as sophisticated as our understanding of the molecu- lar processes involved in an asthma exacerbation? Are certain children engaging in "high-risk behaviors" that place them at heightened risk of asthma? Does clinical discussion of the management of childhood asthma focus as much on the pertinent social determinants of disease course as on the efficacy of certain medications?

When a child comes into the world with heightened risk not readily ascribed to genetic predisposition, some would invoke the notion of injustice. If the burden of disease is found among children liVing in urban poverty, most of them African American or Latino, we should look to social arrangements rather than genetically determined risk for causes. "Structural violence" is one way of describing social arrangements marked by racism and other social inequalities. 5

In the influential view of sociologist lohan Galtung, structural violence is "the

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avoidable impairment of fundamental human needs," embedded in longstand- ing "ubiquitous social structures, normalized by stable institutions and regular experience."6 Because they seem so ordinary in our ways of understanding the world, such violent structures are almost invisible. Disparate access to resources, political power, education, and health care as well as unequal legal standing are just a few examples. Such arrangements do violence to society's losers; the arrangements are structural because they are embedded in the economic orga- nization of our social world. Those responsible for maintaining such inequalities are not the chief victims of structural violence, as the example of a childhood disease like asthma might suggest.

The concept of structural violence is intended to begin, or revive, discussions of social forces beyond the control of our patients. Like all concepts, it has sharp limitations. Nonetheless, we seek to apply the notion to those tasks that remain the primary goals of clinical medicine: preventing premature death and dis- ability and improving the lives of those we care for. Many medical and public health interventions will be ineffective if we are unable to understand the social determinants of disease.

The good news is that such understandings are far more "actionable" than is widely recognized. There is already a vast and growing array of diagnostic and therapeutic tools born of scientific research; it is possible to use these tools in a manner informed byan understanding of structural violence and its impact both on disease distribution and on every step of the process leading from diagnosis to effective care. This means working at multiple levels, from "distal" interven- tions-performed late in the process, when patients are already sick-to "proxi- mal" interventions-trying to prevent illness through efforts such as vaccination, a cleaner water supply, or improved housing.

DELIVERING AIDS CARE EQUITABLY

IN THE UNITED STATES

The distribution and outcome of chronic infectious disease are so tightly linked to social arrangements that it is difficult for clinicians treating these diseases to ignore social factors. AIDS, a relatively new affliction, is considered a social dis- ease, but clinicians often have radically different understandings of what makes AIDS "social." Although the illness was unknown three decades ago, complica- tions of HIV infection have become a leading cause of young adult deaths in the United States.? Many doctors have focused on what are termed the "behaviors" or "lifestyles" that place some at risk for AIDS, while others are shielded.s Yet risk has never been determined solely by individual risk behaviors. Susceptibility to infection and poor outcomes is aggravated, instead, by social factors, including poverty, gender inequality, and racism. 9 In less than a decade, AIDS became a

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disease afflicting America's poor, many of whom engaged in "risk behaviors" at a far lower rate than others who were not at heightened risk of infection with sexually transmitted diseases. lO

Although a more social-and less psychological and behaviorist-reading of AIDS risk affords a deeper understanding of the dynamics of the U.S. epidemic, no single model captures the complexity of risk for HIV infection and poor outcomes. As with childhood asthma, every step of the process occurs in a social context and is socially determined. HIV attacks the immune system in only one way, but its course and outcome are shaped by social forces having little to do with the universal pathophysiology of the disease. From the outset of acute HIV infection to the endgame of recurrent opportunistic infections, disease course is determined by whether or not post-exposure prophylaxis is available, whether or not the steady decline in immune function is hastened by concurrent ill- ness or malnutrition, whether or not multiple HIV infections occur, whether or not tuberculosis is prevalent in the surrounding environment, whether or not prophylaxis for opportunistic infections is reliably available,ll and whether or not antiretroviral therapy (ART) is offered to all those needing it. Throughout this usually decade-long process, structural violence has a profound influence on effective diagnosis, staging, and treatment of the disease and its associated pathologies. Each of these determinants of course and outcome is itself shaped by the very social forces that determine variable risk.

Although the variability of outcomes has been especially obvious in the era of antiretroviral therapy, it was so even before effective ART became available. Leaving aside disease distribution, some might expect that an untreatable disease would run the same course in all patients once infection occurs. But diagnos- ing and treating the chief opportunistic infections that were the cause of death among people living with AIDS did not wait for the development of specific anti- retroviral therapy and specific serologic tests. In the United States, the ranking opportunistic infection was Pneumocystis carinii pneumonia, for which delays in diagnosis and initiation of therapy proved fatal to many, as did interruptions in the lifelong suppressive therapies required to control this and other opportunistic infections. In Baltimore in the early 1990S, data showed that race was associ- ated with the timely receipt of therapeutics: among patients infected with HIV, blacks were significantly less likely than whites to have received antiretroviral therapy or Pneumocystis prophylaxis when they were first referred to an HIV clinic, regardless of disease stage at the time of presentationP The timeline from HIV infection to death was further shortened in situations where the far more virulent tuberculosis was the leading opp~rtunistic infection, as it is in much of the poor worldY The "natural history" of AIDS is a mirage. It must be replaced with biosocial understanding.

This was clear to researchers and clinicians in Baltimore, who described what

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they termed "excess mortality" among African Americans without insurance. Although such terminology was not used in the studies reviewed here, it is pos- sible to argue that racism and other forms of structural violence were embodied as excess mortality.14 What else accounted for racial disparities in clinical out- comes? Regardless of semantics, few epidemiologists seeking to understand the U.S. epidemic were able to ignore the social determinants of both distribution· and outcome of this disease. Some argued for intrinsic "racial" susceptibility to poor outcomes. For others, this was merely a hypothesis to be explored.

As epidemiology, a focus on the standard "risk factors," which did not con- sider structural violence, did not lead far. But after documenting racial dispari- ties in survival rates, the clinicians and researchers in Baltimore asked what would happen if race and insurance status no longer determined who had access to the standard of care (even before treatment routinely included three-drug ART). Their subsequent intervention was more proximal than previous ones, as it involved removing barriers to care. They sought to remove the obvious economic barriers at the point of care, and they also considered transportation costs and other incentives, as well as co-morbid conditions ranging from drug addiction to major mental illness. Improvements in community-based care, designed to make AIDS care more convenient and socially acceptable for patients, were imple- mented. The goal was to make sure that nothing within the medical system or the surrounding community prevented poor and otherwise marginalized patients from receiving the standard of care.

The results registered just a few years later were dramatic: disparities in out- come tied to race, gender, injection drug use, and socioeconomic status disap- peared within the study population. IS In other words, these program improve- ments may not have dealt with the lack of national health insurance, and still less with the persistent problems of racism and urban poverty, but they did lessen the embodiment of social inequalities as premature death from AIDS. Similarly ambitious (if smaller) studies have demonstrated that providers can indeed lessen the impact of social inequalities on AIDS outcomes among the homeless, the addicted, the mentally ill, and prisoners. 16 Making sure that these advances are preserved will require a great deal of vigilance, continued investment in prOXimal as well as distal interventions, and, eventually, the equitable use of any new therapeutic agents. Preserving these gains will also require increased emphasis on community-based care.

The Baltimore experience has implications for the future course of the U.S. AIDS epidemic; it has implications for all those concerned with structural vio- lence in the United States. Eventually, such interventions, or the lack of them, will affect the virus at the molecular level. The program was improved in part by link- ing an understanding of social context to clinical services, but we argue that a properly biosocial analysis must embrace an understanding of social inequalities

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and also molecular-level complexities, in part because we are now witnessing the emergence of what might as well be called "MDR-HIV," or multidrug-resistant HIY. AcqUired resistance to antibiotics, including antiretrovirals, is necessarily a biosocial phenomenon, one that has occurred only since the middle of the twentieth century, when effective antibiotics were first introduced. It is worth remembering that almost all isolates of Staphylococcus aureus were once sus- ceptible to penicillin. Today, in the United States and elsewhere, drug-resistant strains predominate: rates of resistance range upward of 99 percent of strains. 17

Most bacteria, and many viruses and parasites, mutate when challenged with antibiotics; the rate at which pathogens acquire resistance may be hastened by inadequate or interrupted therapy and by imprudent use of antibiotics. IS Structural violence lessens access to effective therapy but is a rarely discussed contributor to epidemics ofMDR-HIV. This is a major gap in our understanding of AIDS. Consider the implications of an important study by Carlos del Rio and colleagues in Atlanta, where Emory University and the public health service have established a state-of-the-art HIV clinic in an area close to the epicenter of the city's AIDS epidemic. Like most U.S. clinical care, however, the services offered are largely within clinic walls: patients have to reach the clinic and remain in care in order to enjoy long-term benefit. As elsewhere, the dominant model is one in which patients are prescribed ART by physicians and then seen in follow-up by physicians, nurses, and even social workers within the facility, rather than in their homes or neighborhoods. Among a largely African American patient popu- lation with high rates of addiction, housing instability, and co-morbid disease, it proved difficult to promote adherence. In one survey, fewer than 15 percent of all patients offered ART could be shown to have suppressed viral loads only a year after the initiation of therapy. 19

Irregular ART will shape the epidemic in novel ways, as intermittent ther- apy, often attributed by clinicians to patient noncompliance and almost never to structural violence, is closely associated with rapidly acquired resistance to antiretrovirals. In a study of ten urban centers in the United States, the frequency of transmitted high-level resistance to one or more antiretroviral drugs was 12-4 percent during the period from 1999 to 2000. 20 As we've argued elsewhere, it is not pOSSible to understand the dynamics of drug-reSistant epidemics of AIDS, tuberculosis, or malaria without understanding structural violence. 21 Although epidemics of treatable infectious disease are perhaps uniquely susceptible to this particular complication of erratic care, structural violence can ensure poor out- comes for virtually all chronic illnesses for which there is a deliverable: seizure disorders, diabetes, hypertension, major mental illness, and several other chronic pathologies are managed effectively only when patients are able to adhere to daily therapies.

It makes sense to argue that structural violence exacts a new sort of toll as

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more effective therapies become available to some but not to all. A growing "outcome gap"22 is registered even as the fruits of basic and clinical research lead to novel and increasingly effective interventions-the darker side of scientific

progress.

PREVENTING PEDIATRIC AIDS IN RWANDA:

LESSONS FROM RURAL HAITI

The impact of structural violence is even more obvious in the world's poorest countries, as is the impact of conventionally defined violence. Yet the mecha- nisms by which poverty and social inequalities come to take their toll among the destitute sick are no less numerous; the quality of analysis required to understand the dynamics of epidemic disease is no less, and no less biosocial in nature, than in affluent, inegalitarian societies. Such analysis has profound implications for all those seeking to provide clinical services in what are these days termed "resource-poor settings."

Over the past year, we have sought to address AIDS and tuberculosis (among other pathologies) in Africa, the world's poorest and most heavily burdened con- tinent. Specifically, we have transplanted and adapted the "Haiti model" of care, which was designed to prevent the embodiment of poverty and social inequalities as excess mortality due to AIDS, tuberculosis, malaria, and other diseases of poverty.23 In some senses, the model is simple: barriers to care, whether found in the clinic or in surrounding communities, are removed as diagnosis and treat- ment are declared a public good and made available free of charge to patients living in poverty. Furthermore, AIDS care is delivered not only at the clinic, in the conventional way, but also within the villages in which our patients work and live. Each patient offered ART or antituberculous therapy is paired with an accompagnateur, usually a neighbor trained to deliver ART and other supportive care in the patient's home. Using this model, we have offered ART to more than 2,100 patients in rural Haiti. Since conventional clinic-based (distal) services are complemented with daily, home-based care, this model is deemed by some to be the world's most effective way of removing structural barriers to quality care for AIDS and other chronic disease. It is also a way of creating jobs in rural regions in great need of them. We have used a similar model in urban Peru and in Boston, Massachusetts.24

Rwanda presents unique challenges, but many barriers to care are quite simi- lar to those confronted in Haiti and other settings where social upheaval, poverty, and gender inequality decrease the effectiveness of distal services and prevention efforts. The parallels between the two countries are striking: both are densely populated, with over eight million inhabitants in a mountainous area roughly the size of the state of Maryland; both are agrarian societies in which the major-

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ity still live in rural regions. Although both countries have endured large-scale political violence, that registered in Rwanda was unprecedented in scale. Little over a decade ago, Rwanda was rent by war and genocide, itself the result of structural violence and also a contributor to the structural violence that persists even after the cessation of hostilities.

In the two rural districts of Rwanda in which the Haiti model was introduced in May 2005, an estimated 60 percent of inhabitants are refugees, returning exiles, or recent settlers; not a single physician was present to serve 350,000 people. AIDS has recently worsened this tableau, as violence and displacement inevitably promote HIV. Although Rwanda is less affected than southern Africa, AIDS has become a leading cause of young adult deaths. In spite of significant resources allocated to treat complications of HIV infection in Rwanda, almost all patients enrolled on ART live in cities or towns. But less than a year after our program began in 2005, more than 1,000 rural Rwandans with AIDS were enrolled in care using the Haiti model.

To deepen our discussion of interventions designed to counter structural vio- lence, consider the prevention of mother-to-child transmission of HIV in rural Rwanda. Our experience in Haiti led us to conclude that it was possible to use the international standard of care-combination ART during pregnancy, followed by formula feeding and close follow-up of infants, complemented by sanitation projects within the catchment area-in even the most difficult regions, where electricity is scarce, food insecurity widespread, and health and sanitation infra- structure rudimentary at best. Another priority is to interrupt, when possible, HIV transmission through breastfeeding by offering similar services not only during pregnancy but during lactation. The impact of such an intervention would appear to be as effective in rural Haiti as it has been in the United States, reducing rates of transmission from as high as.25 to 40 percent to as low as 2 percent. Infant mortality from gastroenteritis is higher in bottle-fed infants (usually stemming from a lack of clean water to use in preparing formula), but it is lessened by the proximal interventions mentioned earlier, reducing mortality among infants born to HIV-positive mothers to a level far below the national level among all Haitian women, regardless of HIV status. 25

At the outset of our project in rural Rwanda, we believed that mother-to-child transmission could be prevented only if our program was linked to efforts to intervene more proximally to improve water supplies and food security, enabling women living in dire poverty to comply with our recommendations. That is, pre- vention of mother- to-child transmission is possible if barriers to compliance-a lack of clean water and infant formula, users' fees for ART and other medical services-are removed.

Implementing this approach has not been easy in rural Africa, where policy- makers, influenced by international regulatory bodies, have continued to advo-

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cate universal breastfeeding, a policy that made eminent sense prior to the advent of HIV (Indeed, an understanding of the outsized influence of international policymakers in Africa is part of a proper biosocial analysis.) Both proximal and distal interventions require substantial funding if we are to launch novel projects in response to novel challenges such as a lethal infectious disease transmitted in utero and through breast milk. In the world's poorest countries, most of which are in Africa, public and foundation support for proposed health interventions is unlikely if the interventions are not deemed "cost-effective." At this writing, there is substantial opposition to programs that deviate from promoting universal breastfeeding, on the grounds that more infants will die from gastroenteritis than from AIDS; and this opposition has diminished support for Rwandan efforts to replicate the Haiti model. Formula feeding for rural Rwandan infants is not feasible, some claim. Others argue that HI V-related stigma will prevent Rwandan women from enrolling in such projects, since failing to breastfeed and receiving regular visits from accompagnateurs and clinic staff would signal to family and neighbors the serostatus of participating women.

That said, opposition to the Haiti model did not come from rural Rwandan women living with HIV disease. Since the project is being piloted now and is only a few months old, it is too early to declare success. But its feasibility is almost certain. In the first six months of operation, more than 31,000 persons were screened in the two districts in which we work. With no exceptions, pregnant women who were found to be infected with HIV expressed interest in ART to ~revent transmission, and all of them requested assistance in procuring not only mfant formula but also the means to boil water and to store the formula safely. To refer again to the anatomic metaphor, the distal intervention was to proVide ART (when pOSSible, a three-drug regimen) to all women in the catchment area, with the help of accompagnateurs. Proximal interventions included supplying kerosene stoves, ker,osene, bottles, and infant formula; food aid was also offered, as was, in certain cases, housing assistance.

More than four hundred infants were enrolled in the formula program between August 2005 and January 2006. The mean age at enrollment was just over ten months, which means that most of the infants in this initial cohort had been born before this project was initiated, and therefore neither they nor their moth- ers benefited from the full package of care, which includes diagnosis of maternal HIV infection during pregnancy, ART for mothers, and substantial assistance to mothers seeking to prevent transmission through alternatives to breastfeeding. Thus some of these infants were infected with HIV prior to enrollment. Yet even when these services were offered tardily, this first group of children appear to have HIV infection rates of around 10 percent, less than half that expected without the intervention. As the program becomes well established, and services become available before the third trimester of pregnancy, rates of transmission will con-

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tinue to decline. In fact, the mean age of enrollment in the infant formula program continues to drop precipitously, with a current mean age around four months.

To date, there is little reason to believe such interventions will fail. Any failure is more likely the result of problems in the program (for example, stockouts of drugs or supplies) than the result of stigma or noncompliance by the women enrolled in the program. This is because structural interventions of this sort remove the onus of adherence from vulnerable patients and place it squarely on the providers.

Interventions of a far more proximal character are readily imagined. Poverty- stricken, post-conflict rural Rwanda is a setting in which the majority of the adult population consists of refugees, widows, and genocide survivors; women- headed households are common and, in eastern Rwanda at least, food insecurity is the rule. These are precisely the settings in which projects such as ours. are rendered more effective by efforts to improve housing, create jobs, and promote literacy. Even more important are efforts to increase agricultural productivity and to distribute land to women-headed households. Along with many partners, including the Rwandan government, we now seek to address structural violence in precisely this manner in these two districts.

Where ART is offered but universal breastfeeding is encouraged, a larger fraction of HIV transmission tei children occurs through breastfeeding than was the case previously. Where clean water is unavailable and HIV prevalence is high, the policy of universal breastfeeding may be associated with lower rates of infant mortality, but infants infected with HIV will later develop AIDS, and the cost of pediatric HIV care or lifetime access to ART does not figure prominently in the cost-effectiveness analyses now in vogue. 26

In middle-income countries with significant gaps between the rich and the poor, cost-effectiveness analyses and other m~trics are often applied selectively. South Africa is one such country. In some ways more like the United States than Rwanda, South Africa is a country in which racial identity determined social standing for much of its history as a colony or state. Over the past two decades, it has become the country with the world's largest burden of HIV, leading some to say that HIV is not tightly associated with poverty, since many far poorer coun- tries have lower rates of infection. But HIV transmission is more closely linked to social inequalities than to absolute poverty. 27 As HIV claimed more and more black lives, sparing the white and "colored" minorities, more was made of pur- ported "behavioral" or "cultural" risk factors than of structural considerations, such as labor migration and land appropriation.

Structural violence is difficult to eradicate, even when political will is abun- dant. Post-apartheid South Africa is a case in point. The country is well known for its high-end medical services: the standard of care available in South African cities is the same as that in Europe and North America. But longstanding poli-

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cies excluded the black majority from access to the goods and services taken for granted by more privileged citizens, and the end of apartheid has not yet erased these inequalities. Still, the 1994 constitution forbids racial discrimination, and more recent policies have in fact pushed for the highest standard of care for all. Over the past year, South Africa enrolled more patients on ART than any other African country; in several programs, infant formula was to be made available free of charge to women who had received ART during pregnancy. But the quality of these services has lagged far behind the policies. "Vertical," or free- standing, services were established to prevent mother-to-child transmission and distribute infant formula, but even for those fortunate enough to receive these services, drug stockouts were common, and the quality of counseling and other services was often poor. Mixed feeding is common, with many infants receiving both infant formula and breast milk. 28

As a result of recent changes, South Africa is now registering precisely the sort of shift in transmission pattern mentioned earlier: a smaller fraction of all mother-to-child transmission occurs during the third trimester of pregnancy and a larger fraction through breastfeeding. As long as women remain on ART during breastfeeding, an overall decline in transmission to children will ensue. But there is an urgent need for improving the quality of services and increasing community-based accompaniment to support poor women seeking to keep their children free of both HIV and waterborne disease. Emerging data suggest that, over the past decade and, most significantly, among blacks, infant mortality has continued to rise. 29

In response to these disturbing developments, some policymakers, not all of them South African (and fewer still black South Africans), have counseled a return to universal breastfeeding, even though the country is still in the midst of an expanding AIDS epidemic and already has the world's largest burden of HIV among women of childbearing age. 30 Since this is not the standard of care inter- nationally or for South African whites, it is resisted by those seeking to erase the legacy of apartheid. As a compromise, these experts suggest that women who are diagnosed with HIV infection while pregnant be assessed for their "likeliness to comply" with recommendations regarding infant formula. 3! Those deemed likely to comply are counseled against breastfeeding; those deemed unlikely to comply are counseled to breastfeed. When pressed about what such an assessment might entail, researchers and policymakers describe a process that seeks to determine who is most able to procure clean water (or the fuel required to boil it) on a daily basis. Such an approach means that the poorest women, already those most likely to become infected with HIV, will be those least likely to receive the tools known to prevent HIV transmission to their infants. Thus the pediatric HIV epidemic will persist there, even if mortality during the first year of life is reduced by the immunological benefits of breast milk.

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South Africa is frequently described as the continent's wealthiest country, but really it is better seen as a country damaged by a special kind of structural violence. Any comprehensive analysis seeking to understand the dynamics of the epidemic among children there will necessarily be biosocial, linking the history and political economy of southern Africa, including labor migration, to the feast-or-famine medical services available in the continent's wealthiest, though inegalitarian, country. Among the African poor, whether they live in South Africa or in Rwanda, success in preventing HIV transmission from mother to child will likely depend on implementing more proximal interventions.

INCORPORATING STRUCTURAL INTERVENTIONS

IN MEDICINE AND PUBLIC HEALTH

If structural violence is often a major determinant of both the distribution and outcome of chronic disease, why is this or a similar concept not in wider use in medicine and public health, especially when our interventions can radically alter clinical outcomes? One reason is that medical professionals are not trained to make structural interventions. Physicians can rightly note that such interven- tions are "not our job." Yet since structural interventions might arguably have a greater impact on disease control than conventional clinical interventions, we would do well not to confuse our own quests for personal efficacy with the needs of the poor.

Just as it is a mistake to focus solely on distal interventions, so too is it a mistake to focus solely on structural ones. For decades, those who study the determinants of disease have known that social or structural forces account for most epidemic disease. But truisms such as "poverty is the root cause of tubercu- losis" have not led us very far. First, we don't yet have a curative prescription for poverty. But we do know how to cure tuberculosis. Second, those who argue that focusing solely on economic development will in time wipe out tuberculosis may be correct, but en route toward this utopia the body count will remain high if care is not taken to diagnose and treat the sick. The same holds true for other diseases of poverty. Clean water and sanitation will prevent cases of typhoid fever, but those who fall ill need antibiotics; clean water comes too late for them.

Similar debates about how best to use scarce resources are as old as medicine itself. It is in resource-poor settings especially that we must seek to avoid the "Luddite trap" that would have us focus solely on prevention, especially now that we have effective therapies for almost all the diseases of poverty. 32 Prevention and care are best seen not as competing priorities but as complementary, even syner- gistic, endeavors. Yet international public health is today rife with false debates along precisely these lines; many of its practitioners have fallen into the Luddite trap. For decades, we have seen subtle discussion of the chief social determinants

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of disease give way to bitter struggles over resource allocation. During recent years, these struggles have become even more acrimonious.

How many times have we heard, for example, that AIDS prevention alone must suffice in settings of poverty?33 Or that we need not bother with drug- resistant or extrapulmonary tuberculosis, forms that are difficult to diagnose and treat? Or that passive case-finding, rather than more costly efforts to go and find the sick in their homes, is all that we can afford? Or that surgical services are not cost-effective in rural areas of Africa? The list of impossible choices facing those who work among the destitute sick seems endless. There is no good way to tackle the health crisis in Africa with the scant resources previously available, and thus is structural violence perpetuated at a time when science and medicine continue to yield truly miraculous tools. Without an equity plan to bring these tools to bear on the health problems of the destitute, these debates will continue to waste precious time. 34

Returning to our case studies, what might constitute appropriate structural interventions offering the promise of decreasing premature morbidity and mor- tality? Several were mentioned here, but there are many others. In the United States and in. South Africa, it is possible to decrease the extent to which rac- ism and poverty become embodied as health disparities. Some interventions are straightforward enough, as this discussion has shown. To consider the problem in the broadest terms, there is an enormous flaw in the dominant model of medi- cal care: as long as medical services are sold as commodities, they will remain available only to those who can purchase them. Insurance schemes based on helping those in greatest need or at heightened risk help to prevent structural violence from taking its toll among the poor. National health insurance and other social safety nets, including those that guarantee primary education and food security and clean water, are important because they promise rights, rather than commodities, to citizens. A lack of these social and economic rights is fundamental to the perpetuation of structural violence.35

Other, more proximal interventions, though deemed quite remote from the practice of clinical medicine, also promise to lessen premature morbidity and mortality. For example, at least one study, focusing on African American women in Los Angeles, has found less condom use-and thus a greater risk of transmit- ting HIV-among couples in which the woman is dependent on her male partner for rent money.36 How might a right to housing or job security affect the HIV epidemic among U.S. women living in poverty? To put this in sociological terms, interventions that increase the agency (the ability to choose) of the poor will lessen the risk of HIV. Similarly, it is not possible to have an honest discussion of alcoholism among Native Americans,37 or crack cocaine addiction among African Americans,3s without discussing the history of genocide and slavery in North America. Again, such commentary is seen as altogether extraneous

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in medical and public health circles, where discussions of substance abuse are curiously desocialized, viewed as personal and psychological problems rather than societal ones. Here, too, structural violence is perpetuated through analytic omission.

Structural interventions would certainly have enormous impact in rural Rwanda. Certain interventions are already under way-provision of ART, infant formula, bottles, clean water, containers, fuel, and a cooker-and it is still pos- sible to improve access to each component of the project: legislation to promote the use of generic medications; better distribution networks for ART and infant formula; clean-water campaigns; and the development of alternative fuels. More proximally still, additional interventions would include enhancing agricultural production, creating new jobs outside the agricultural sector, addressing gen- der inequality through legislation that concerns not only land tenure but also political representation (Rwanda has become a leader in this arena by mandating gender equity in parliament),39 and promoting adult literacy.

Although these are not the tasks for which clinicians were trained, such proj- ects are nonetheless central to the struggle to reduce premature suffering and death. The importance of such societal projects to the future of health care means that practitioners of medicine and public health must make common cause with others who are trained to intervene more proximally. Settings as disparate as inner-city America and rural Rwanda are similar in the need for basic social and economic rights, including national health insurance, improved public educa- tion, and gender equity in political representation; those who live there need more and better jobs, and fair trade policies.

Sometimes public health crises, such as the AIDS pandemic in Africa, can lead to bold and specific interventions, such as the campaign to provide AIDS prevention and care as a public good. 4o When linked to more structural inter- ventions, such ostensibly specific campaigns can help to trigger a "virtuous social cycle" that promises to lessen the burden of pathology borne by children and young adults-a major victory in the struggle to decrease structural violence.

CONCLUSIONS

During the nineteenth century, pioneers of modern public health such as Rudolf Virchow understood that epidemic disease and dismal life expectancies were tied tightly to social conditions. Such leaders did not employ the term "structural violence," but they were well aware of its toll and argued compellingly for proxi- l1:lal interventions-land reform, education, basic sanitation, sovereignty, and an end to political oppression. These interventions are no less needed now that we have better distal tools, including vaccines, more accurate diagnostics, and a large armamentarium of effective therapeutics. Soon, medicine and public health

39° STRUCTURAL VIOLENCE STRUCTURAL VIOLENCE AND CLINICAL MEDICINE 39 1

will boast many of the tools that could conceivably help to prevent structural violence, in all its forms, from becoming embodied as adverse health outcomes. Although it is true that eqUitable use of distal interventions does not address social inequalities directly, the push for health equity remains a worthy goal for all practitioners of medicine and public health.

As increasingly effective interventions are developed, there is great danger in failing to consider what occurs when we do not adopt a rights-based approach to epidemic disease. Wherever our goods and services remain commodities to be purchased, there are always some who are unable to buy them. The poor are the natural constituency of public health; physicians, as Virchow argued, are the natural attorneys of the poor. In the. twenty-first century, the greatest human rights struggles will include the right to health care.

In conclusion, it does not matter what we call it: structural violence remains a ranking cause of premature death and disability. We can begin by "resocializing" our understanding of disease distribution and outcome. Even new diseases such as AIDS have quickly become diseases of the poor, and even the development of effective therapies may have a perverse effect if we are unable to use them where they are needed most. By insisting that our services be delivered equitably, even physicians who work on the distal interventions characteristic of clinicalmedi- cine have much to contribute to redUCing the toll of structural violence. Although we may reasonably observe that the structural interventions described here are not our responsibility, equity in health care is our responsibility. Only when we link our efforts to those of others committed to initiating virtuous social cycles can we expect a future in which medicine attains its noblest goals.

NOTES

1. See Parmer, "Social Medicine and the Challenge of Biosocial Research" (included in this volume as chapter 11).

2. See Osterberg and Blaschke, "Adherence to Medication"; Sumartojo, "When Tuberculosis Treatment Pails"; Brandt, No Magic Bullet; Dubos and Dubos, The l,Vhite Plague; Packard, White Plague, Black Labor; Peldberg, Disease and Class.

3· Akinbami and Schoendorf, "Trends in Childhood Asthma." 4· McConnochie et aI., "Socioeconomic Variation in Asthma Hospitalization"; Gottlieb, Beiser,

and O'Connor, "Poverty, Race, and Medication Use Are Correlates of Asthma Hospitalization Rates."

5· Farmer, "An Anthropology of Structural Violence" (included in this volume as chapter 17). 6. Winter and Leighton, "Structural Violence, Introduction," p. 99, paraphrasing Galtung,

"Violence, Peace, and Peace Research." See also Galtung, "Cultural Violence"; Gilligan, Violence. Galtung formulates the issue as follows:

Violence is present when human beings are being influenced so that their actual somatic and mental realizations are below their potential realizations.... Violence is here defined as the cause of the difference between the potential and the actual. ... TIrus, if a person died from

tuberculosis in the eighteenth century it would be hard to conceive of this as violence since it might have been quite unavoidable, but if he dies from it today, despite all the medical resources in the world, then violence is present according to our definition ....

... We shall refer to the type of violence where there is an actor that commits the violence as personal or direct, and to violence where there is no such actor as structural or indi- rect. ... There may not be any person who directly harms another person in the structure. The violence is built into the structure and shows up as unequal power and consequently as unequal life chances. ("Violence, Peace, and Peace Research," pp. 168, 170-71)

7. National Center for Health Statistics, "Annual Summary of Births, Marriages, Divorces, and Deaths: United States, 1993," pp. 18-20, table 8.

8. Treichler, "AIDS, Homophobia, and Biomedical Discourse." 9. See Farmer, AIDS al1d Accusation; Farmer, Connors, and Simmons, Women, Poverty, and

AIDS; National Research Council, Panel on Monitoring the Social Impact of the AIDS Epidemic, The Social Impact ofAIDS il1 the Ul1ited States.

10. Toltzis et al., "Human Immunodeficiency Virus (HIV)-Related Risk-Taking Behaviors in Women Attending Inner-City Prenatal Clinics in the Mid-West"; Gottlieb et aI., "Seroprevalence and Correlates of Herpes Simplex Virus Type 2 Infection in Five Sexually-Transmitted-Disease Clinics."

11. Wiktor et aI., "Efficacy of Trimethoprim-Sulphamethoxazole ProphylaXis to Decrease Mor- bidity and Mortality in HIV-I-Infected Patients with Tuberculosis in Abidjan, Cote d'Ivoire."

12. Moore et aI., "Racial Differences in the Use of Drug Therapy for HIV Disease in an Urban COlnmunity."

13. Lucas et aI., "The Mortality and Pathology of HIV Infection in a West African City." 14. Scheper-Hughes and Lock, "The Mindful Body." 15. Chaisson, Keruly, and Moore, "Race, Sex, Drug Use, and Progression of Human Immuno-

deficiency Virus Disease." 16. See Bangsberg et aI., "Protease Inhibitors in the Homeless"; Behforouz, Parmer, and Mukher-

jee, "From Directly Observed Therapy to Accompagl1ateurs"; !YIitty et aI., "The Use of Community- Based Modified Directly Observed Therapy for the Treatment of HI V-In fected Persons."

17. Fridkin et aI., "Methicillin-Resistant Staphylococcus Aureus Disease in Three Communi- ties"; Rajaduraipandi et aI., "Prevalence and Antimicrobial Susceptibility Pattern of Methicillin Resistant Staphylococcus Aureus."

18. Neu, "The Crisis in Antibiotic Resistance."

19· Del Rio et al., "Prom Diagnosis to Undetectable." 20. Little et aI., "Antiretroviral-Drug Resistance among Patients Recently Infected with HIY." 21. Farmer and Becerra, "Biosocial Research and the TDR Agenda"; Walton, Farmer, and Dill-

ingham, "Social and Cultural FactOrS in Tropical Medicine." 22. Wise, "Confronting Racial Disparities in Infant Mortality." 23· Parmer, Leandre, Mukherjee, Claude, et aI., "Community-Based Approaches to HIV Treat-

ment in Resource-Poor Settings"; Walton et aI., "Integrated HIV Prevention and Care Strengthens Primary Health Care" (included in this volume as chapter 13).

24· Mitnick et aI., "Community-Based Therapy for Multidrug-Resistant Tuberculosis in Lima, Peru"; Shin et aI., "Community-Based Treatment of Multidrug-Resistant Tuberculosis in Lima, Peru"; Behforouz, Farmer, and Mukherjee, "From Directly Observed Therapy to Accompagnateurs."

25· Raymonville et aI., "Prevention of Mother-to-Child Transmission of HI V in Rural Hait!." 26. As Dr. Peter Piot, executive director of UNAIDS, commented in an interview: "This orphan

crisis is a major reason for introdUcing treatment for adults on a wider scale.... I have never seen that in these simplistic cost-effectiveness analyses [of whether drugs are affordable in the developing

39 2 STRUCTURAL VIOLENCE

world] .... They haven't even thought that there are orphans left behind when adults die" (Boseley,

"13AM Children Are AIDS Orphans, Says Report"). 27. Gakidou and King, "Measuring Total Health Inequality." 28. Bobat et aI., "Breastfeeding by HIV-I-Infected Women and Outcome in 1heir Infants"; Bland

et aI., "Breastfecding Practices in an Area of High HIV Prevalence in Rural South Africa"; Sibeko et aI., "Beliefs, Attitudes, and Practices of Breastfeeding Mothers from a Periurban Community in

South Africa." 29. Burgard and Treiman, "Trends and Racial Differences in Infant Mortality in South Africa."

30. Coutsoudis, "Infant Feeding Dilemmas Created by HIY." 31. "Given these dilemmas, recent consultations held by the UN Interagency Task Team con-

cluded that an HIV-positive mother should be counselled on the risks and benefits of different infant feeding options and should be guided in selecting the most suitable option for her situation. The ideal option is the one that is most acceptable, feasible, affordable, sustainable and safe in her particular context. If one of these conditions is not met with regard to formula feeding, the woman should be counselled to practice exclusive breastfeeding for the first few months. The final decision should be the woman's, and she should be supported in her choice" (joint United Nations Pro-

gramme on HIV/AIDS, "Selected Issues," p. 22). 32. Farmer, Infections and Inequalities, pp. 217, 225, 264, 286. 33. Donnelly, "Prevention Urged in AIDS Fight." 34. Farmer, "The Major Infectious Diseases in the World-To Treat or Not to Treat?" (included

in this volume as chapter 12). 35. Farmer, Pathologies of Power, pp. 162, 175· 36. Wyatt, "Transaction Sex and HIV Risks." 37. Shkilnyk, A Poison Stronger TIJan Love. 38. Chien, Connors, and Fox, "The Drug War in Perspective." 39. Lacey, "Women's Voices Rise as Rwanda Reinvents Itself." 40. Kim and Gilks, "Scaling Up Treatment-Why We Can't Wait."

19

Mother Courage and the Costs of War

(2008)

I won't let you spoil my war for me. Destroys the weak, does it? Well, what does peace do for 'em, huh? Warfeeds its people better.

BERTOLT BRECHT, MOTHER COURAGE AND HER CHILDREN

WHAT IS IT GOOD FOR?

War is good for something, or someone, or it would not have persisted for mil- lennia as a major staple of human interaction. War pays, goes the old saw. But what are the wages of war? Whom does it pay, and who pays for it? How does it pay? Most important, what are the real costs of war and conflict? My guess is that Bertoh Brecht wrote his famous play Mother Courage in order to ask and answer some of these questions. And the answers are revealed, over time, to his unlikely protagonist, a Swedish market woman and mother seeking to keep her head above water in the course of a seventeenth-century conflict whose purposes were unclear then and were even more so by 1939, when Brecht created Mother Courage. (The play was provoked, say his biographers, by the German invasion of Poland in September of that year.) Mother Courage's ability to answer these and other questions comes only as she loses her three children in quick succes- sion. The lines cited above, in which she claims that war pays more than peace, are uttered just as she, a shrewd businesswoman even in the worst of times, has reaped a few of the meager and transient spoils of war. But the play is called Mother Courage and Her Children because, by the end, the audience or reader knows that the affective costs oflosing one's children-and all victims of war are someone's children-are simply too high to calculate.

Today, when we ask questions about the costs of war, we are offered disparate quantitative answers. Were I to access a website regarding the cost of war, I could read that the war in Iraq has cost the United States, to date, $503,336,825,602 or

393

CALIFORNIA SERIES IN PUBLIC ANTHROPOLOGY

The California Series in Public Anthropology emphasizes the anthropologist's role as an engaged intellectual. It continues anthropology's commitment to being an ethnographic witness, to de- scribing, in human terms, how life is lived beyond the borders of many readers' experiences. But it also adds a commitment, through ethnography, to reframing the terms of public debate-trans- forming received, accepted understandings of social issues with new insights, new framings.

Series Editor: Robert Borofsky (Hawaii Pacific University)

Contributing Editors: Philippe Bourgois (University of Pennsylvania), Paul Farmer (Partners in Health), Alex Hinton (Rutgers University), Carolyn Nordstrom

(University of Notre Dame), and Nancy Scheper-Hughes (UC Berkeley)

University of California Press Editor: Naomi Schneider

PAUL FARMER

Partner to the Poor A Paul Farmer Reader

Edited by

Baun Saussy

Foreword by

Tracy Kidder

UNIVERSITY OF CALIFORNIA PRESS

Berkeley Los Angeles London