Paul Farmer, _Infections and Inequalities: The Modern Plagues_, Berkeley: U of California P, 1999 Paul Farmer, MD, Ph.D Associate Professor of Social Medicine, Harvard University [Paul Farmer is a physician and anthropologist. In addition to his book, _Infections and Inequalities: The Modern Plagues_ Farmer is also co-editor of _Women, Poverty, and AIDS_, and author of _The Uses of Haiti_, and _AIDS and Accusation_. In 1993 he was awarded the MacArthur Foundation "genius award" for his work.] Chapter 2: Rethinking "Emerging infectious Diseases" ...GOING WHERE? THE CASE OF HIV To grasp the complexity of the issues -- medical, social, and communicational -- that surround the emergence of a disease into public view, consider AIDS. In the early 1980s health officials informed the public AIDS had probably emerged from Haiti. As Chapter 4 describes, speculation proved incorrect, but not before doing significant damage to Haiti's tourist industry and economy. The result: more desperate poverty, and a yet steeper slope of inequality and vulnerability to disease, including AIDS. The label "AIDS vector" was also a heavy burden for the million or so Haitians living elsewhere in the Americas and certainly hampered public health efforts among them.40 HIV disease has since become the most spectacularly studied infection in human history. But some questions have been much better studied than others, and among those too well studied are a number of utter dead ends. Nonetheless, error is worth studying, too. Careful investigation of the mechanisms used to propagate immodest claims is an important part of a critical epistemology of emerging infectious diseases. As regards Haiti and AIDS, these mechanisms included the "exoticization" of Haiti, the existence of influential folk models about Haitians and Africans, and the conflation of poverty and cultural difference. Critical epidemic studies might well reveal such folk models and half-baked cultural generalizations as unfortunate co-factors in the disease's spread. HIV may not have come from Haiti, but it certainly went to Haiti. A critical reexamination of the Caribbean AIDS pandemic reveals that distribution of HIV disease does not follow the outlines of nation-states but rather matches the contours of a transnational socioeconomic order. As Chapter 4 shows, much of the spread of HIV in the 1970s and 1908s moved along international "fault lines," tracking along steep gradients of inequality, which are also the paths of labor migration and sexual commerce.41 Also lacking, then, are considerations of the multiple dynamics of AIDS. In an important overview of the pandemic's first decade, Mann, Tarantola, and Netter observe that its course "within and through global society is not being affected -- in any serious manner -- by the actions taken at the national or international level.42 HIV has emerged, but where is it going? Why, how, and how fast? The Institute of Medicine catalog lists several factors facilitating the emergence of HIV: "urbanization; changes in lifestyles/mores; increased intravenous drug abuse; international travel; medical technology."43 Much more could be said. HIV has spread across the globe, often wildly but never randomly. Like tuberculosis, HIV is entrenching itself in the ranks of the poor and marginalized. Take, as an example, the rapid increase in AIDS incidence among women. In a 1992 report, the United Nations observed that "for most women, the major risk factor for HIV infection is being married."44 It is not marriage per se, however, that places young women at risk. Throughout the world, most women with HIV infection, married or not, are living in poverty. The means by which confluent social forces -- here, gender inequality and poverty -- come to be embodied as risk for infection with this emerging pathogen have been neglected in the biomedical, epidemiologic, and even social science literature on AIDS. As recently as October 1994 -- fifteen years into an ever-emerging pandemic -- editorialists writing in Lancet could comment concerning a new study: "We are not aware of other investigators who have considered the influence of socioeconomic status on mortality in HIV-infected individuals."45 Thus AIDS follows the general rule that the effects of certain types of social forces on health outcomes are less likely to be studied. Yet AIDS has always been a strikingly patterned pandemic. Despite the message of public health slogans -- "AIDS Is for Everyone" -- some groups are at high risk of HIV infection, whereas others clearly are shielded from risk. Furthermore, although the terminal events have been grimly similar across the board, the course of HIV disease has been highly variable. These disparities have sparked the search for hundreds of cofactors, from Mycoplasma and ulcerating genital lesions to voodoo rites and psychological predispositions. To date, not a single one of these associations has been convincingly shown to explain disparities in distribution or outcome of HIV disease. The most well-demonstrated co-factors are social inequalities, which structure not only the contours of the AIDS pandemic but also the nature of outcomes once an individual is sick with complications of HIV infection.46 And a "cure," though eminently desirable, will not change the prognosis for the vast majority of AIDS sufferers. The advent of more effective antiviral agents promises to heighten those disparities even further: a three-drug regimen including a protease inhibitor costs $12,000 to $16,000 a year.47 The formulators of health policy have already declared antiviral therapy to be "cost-ineffective" in very regions in which HIV is most endemic. TAKING A SECOND LOOK AT EMERGING INFECTIOUS DISEASES Writing of the emerging infectious diseases of the century, Zinsser observed in 1934 that "the appraisal of the appearance of a so-called 'new' disease is fraught with many pitfalls."48 Even a cursory reading of emerging literature on emerging diseases makes it clear that the examples cited here -- Ebola, tuberculosis, HIV -- are in no way unique in demanding contextualization through approaches offered by the social sciences. Ethnographic work is often a powerful corrective for tendencies to generate flimsy hypotheses and to rely on outmoded or inappropriate categories.49 For example, an anthropologist working in Haiti in the early 1980s would have quickly questioned the hypothesis that voodoo is somehow related to the occurrence of the new disease known as AIDS. The "risk groups" identified by slipshod epidemiologic research would have been called into question by an intimate acquaintance with the emerging epidemic in Haiti -- an epidemic that was, in fact, transnational in nature and tightly linked not to voodoo but to high grades of inequality between Haiti and the nearby United States. Such approaches also include the grounding of case histories and all epidemics in the larger biosocial systems in which they take shape which calls, most of the time, for the exploration of social inequalities. Why, for example, were there ten thousand cases of diphtheria in Russia from 1990 to 1993? It is easy enough to answer, as did the CDC, that excess cases were due to a failure to vaccinate.50 But only if we link distal (and, in sum, technical) cause to the much more complex socioeconomic transformations altering the region's morbidity and mortality pattern will we discover compelling explanations.51 An epidemiology that is narrowly focused on individual risk and short on critical contextualization will not reveal these deep transformations, nor will it connect them to disease emergence.... For understanding and eventually controlling emerging infectious diseases, the research questions identified by various blue-ribbon panels are uncontestably important; they are, no doubt, the primary issues raised by the epidemics in question.54 Yet there exists a series of corollary questions posed both by the diseases and by popular and scientific commentary about them. These questions pose, in turn, a series of research questions that are the exclusive province neither of social scientists nor of bench scientists, neither clinicians nor epidemiologists. Indeed, we will need genuinely transdisciplinary collaboration to tackle the problems posed by emerging infectious diseases. As prolegomenon, four areas of corollary research, outlined in the following sections, are easily identified. In each is heard the recurrent leitmotiv of inequality. 1. Emerging Infectious Diseases and Social Inequalities Study of the reticulated links between social inequalities and emerging disease would not construe the poor simply as "sentinel chickens" or mineshaft canaries. Instead it would ask, "What are the precise mechanisms by which these diseases come to afflict some bodies but not others? What propagative effects might inequality per se contribute?"55 Similar queries were once major research questions for epidemiology and social medicine, but they have fallen out of favor, leaving a vacuum in which scholars and officials can easily stake immodest claims of causality. Studies that examine the conjoint influence of social inequalities are virtually nonexistent; Krieger, Rowley, Herman, Avery, and Phillips, in a magisterial review, conclude that "the minimal research that simultaneously studies the health effects of racism, sexism, and social class ultimately stands as a sharp indictment of the narrow vision limiting much of the epidemiological research conducted within the Unite States."56 And yet social inequalities shape not only the distribution emerging diseases but also the health outcomes of those afflicted -- a fact that is often downplayed: "Although there are many similarities between our vulnerability to infectious diseases and that of our ancestors, there is one distinct difference: we have the benefit of extensive scientific knowledge," wrote David Satcher in 1995.57 True enough, one is willing to gloss over the all-important question of who "we" are. The persons most at risk for emerging infectious diseases general do not, in fact, have much of the benefit of scientific knowledge. We live in a world where infections pass easily across borders -- social art geographic -- while resources, including cumulative scientific know edge, are blocked at customs. 2. Emerging Infectious Diseases in Transnational Perspective "Travel is a potent force in disease emergence and spread," as Wilson reminds us, and the "current volume, speed, and reach of travel are unprecedented."58 Although the smallpox and measles epidemics accompanying the European colonization of the Americas were early and deadly reminders of the need for systemic understandings of microbial traffic, recent decades have seen a certain reification of the notion of the "catchment area." A useful means of delimiting a sphere of actions -- a district, a county, a country -- has been erroneously elevated to the status explanatory principle whenever the geographic unit of analysis is other than that defined by the disease itself. ...[A] critical sociology of liminality -- of both the advancing, transnational edges of pandemics and the impress of human-made administrative and political boundaries on disease emergence -- has yet to be attempted. But this sort of pragmatic solidarity, even if born of self-interest, seems unlikely to occur without new a new and aggressive advocacy. "Unless there is a clear and substantial immediate local need," notes a recent Lancet editorial, the "long term implications of transnational disease spread are rarely addressed."60 The study of borders qua borders means, increasingly, the study of social inequalities. Many political borders serve as semipermeable membranes, often quite open to diseases and yet closed to the free movement of cures. Thus inequalities of access can be created or buttressed at borders, even when pathogens cannot be so contained. Research questions might include, for example, the following: How does the interface between two very different types of health care systems affect the rate of advance of an emerging disease? What turbulence is introduced when the border in question lies between rich and poor nations? Writing of health issues at the U.S.-Mexican border, for example, Warner notes: "It is unlikely that any other binational border has such variety in health status, entitlements, and utilization."61 Among the infectious diseases registered at this border are multidrug-resistant tuberculosis, rabies, dengue, and sexually transmitted diseases including HIV (said to be due, in part, to "cross-border use of red-light districts"). As Russia's epidemic of multidrug-resistant tuberculosis continues to grow, wealthy Scandinavia -- and eventually other parts of Europe -- will be hard-pressed to argue that the treatment of the disease is not "cost-effective" in Russia. As increased air and sea travel change our notion of shared borders, steep grades of transnational inequality become more significant. Methodologies and theories relevant to the study of borders and emerging infections can come from disciplines ranging from the social sciences to molecular biology; mapping the emergence of diseases is now more feasible with the use of DNA fingerprinting and other new technologies. Again, such investigations will pose difficult questions in a world where plasmids move freely but compassion is often grounded. 3. Emerging Infectious Diseases and the Dynamics of Change As we elaborate lists of the factors that influence the careers of infectious diseases, we need conceptual tools that will perforce be historically deep, geographically broad, and at the same time processual, incorporating concepts of change. Above all, these tools must allow us to incorporate complexity rather than merely dissect or dismiss it. As Levins argues, "effective analysis of emerging diseases must recognize the study of complexity as perhaps the central general scientific problem of our time." But the complexity of operators is convincing only when the variables on which it operates are well chosen. Can integrated mathematical modeling be linked to new ways of configuring systems, avoiding outmoded units of analyses such as the nation-state in favor of the more fluid biosocial networks through which most pathogens clearly move? Can our en brace of complexity also encompass social complexities, including the unequal positioning of groups within larger populations? Such perspectives could be directed toward mapping the progress of diseases ranging from cholera to AIDS and would be suited to analysis of more unorthodox research subjects -- for example, the effects of World Bank project and policies on diseases ranging from onchocerciasis to plague. 4. Emerging Infectious Diseases and Critical Epistemology I have argued that when we ask, "What qualifies as an emerging infectious disease?" we should understand that we are also asking, "What is meant by 'emerging'?" This is no trivial shift of topic. It leads to other questions: Why do some persons constitute "risk groups," while others are "individuals at risk"? Why are some approaches and subjects considered appropriate for publication in influential journals, while other are dismissed out of hand? A critical nosology would explore the boundaries of polite and impolite discussion in science, interrogating the way in which perceptions of a disease might contribute to its career. A trove of complex, affect-laden issues -- the attribution of blame to perceived vectors of infection, the identification of scapegoats and victims, the role stigma -- though rarely discussed in academic medicine, are manifest part and parcel of many of the epidemics in question. Finally, why are some epidemics visible to those who fund research and services, while others are invisible? As we will see in examining multidrug-resistant tuberculosis, the degree to which this disease is seen as threat varies with the degree to which the powerful -- or, at least, the no poor -- are deemed to be "at risk." In its recent statements on tuberculosis and emerging infections, the World Health Organization manifestly attempts to use fear of contagion to goad wealthy nations into investing in disease surveillance and control out of self-interest -- an age-old public health ploy acknowledged as such in the Institute of Medicine report on emerging infections: "Diseases that appear not to threaten the United States directly rarely elicit the political support necessary to maintain control efforts."64 The rhetoric of immediacy has been central to professional commentary on emerging infectious diseases, a strategy that is not without risk for those who have been silently suffering with these diseases, often for generations. In fact, differential valuation of human life runs throughout this commentary and throughout much of the policy designed to address epidemic disease. Critical reexamination of the impact of such differential valuation and its effect on the allocation of resources must figure in discussion of emerging infections. That it does not is a marker more of analytic failures than of editorial standards. More than ten years ago, the sociologist of science Bruno Latour reviewed hundreds of articles appearing in several Pasteur-era French scientific reviews in order to constitute what he called an "anthropology of the sciences" (he objected to the term "epistemology"). Latour cast his net widely. "There is no essential difference between the human and social sciences and the exact or natural sciences," he wrote, "because there is no more science than there is society. I have spoken of the Pasteurians as they spoke of their microbes."65 Here, perhaps, is a reason to engage in a proactive effort to explore themes usually relegated to the margins of scientific inquiry: those of us who describe the comings and goings of microbes -- feints, parries, emergences, retreats -- may one day be subjected to the scrutiny of future students of the subject. But there are more compelling reasons to seek a sounder analytic grasp of disease emergence. The Pasteurians' microbes remain the world's leading cause of death.66 In an essay entitled "The Conquest of Infectious Diseases: Who Are We Kidding?" two researchers from the CDC argue that "clinicians, microbiologists, and public health professionals must work together to prevent infectious diseases and to detect emerging diseases quickly."67 Clearly such transdisciplinary work is necessary if we aspire to a sound analytic purchase on disease emergence -- a prerequisite site of effective control measures. My intention is ecumenical and complementary. A critical framework would not aspire to supplant the methodologies of the many disciplines, from virology to molecular epidemiology, that now concern themselves with emerging diseases. "The key task for medicine," argued the pioneers Eisenberg and Kleinman almost two decades ago, "is not to diminish the role of the biomedical sciences in the theory and practice of medicine but to supplement them with an equal application of the social sciences in order to provide both a more comprehensive understanding of disease and better care of the patient. The problem is not 'too much science,' but too narrow a view of the sciences relevant to medicine."68 The rest of this book brings this biosocial framework to bear on the eases that have wreaked such havoc on the lives of my patients. The focus is thus on the two diseases -- tuberculosis and AIDS -- that have caused the greatest number of deaths. Along the way, it becomes clear that malaria, typhoid, and the other plagues of the poor must be subjected to similar scrutiny. But the goal of this rethinking is never merely to come up with a better model. The goal, all along, has been to allay unnecessary suffering caused by inequality and its embodied forms. <http://HIVInSite.ucsf.edu/social/books/2098.438e.html> _______________________________________________ Leninist-International mailing list [EMAIL PROTECTED] To change your options or unsubscribe go to: http://lists.wwpublish.com/mailman/listinfo/leninist-international
