christian mcmillen book forum

Somatosphere | September 4, 2015

Book Forum:

Christian McMillen’s Discovering Tuberculosis: A Global History, 1900 to the Present David Jones Harvard University Erin Koch University of Kentucky Janina Kehr University of Zurich Niels Brimnes Aarhus University Christoph Gradmann University of Oslo Joanna Radin Yale University Edited by Todd Meyers Wayne State University Christian McMillen’s Discovering Tuberculosis is many things, but mostly it is an account of failure. The book is a story of disease control in the twentieth century that is anything but controlled. McMillen gives needed attention to problems of the past that find themselves – unexpectedly, dangerously – occupying our present moment. Though it should be made clear from the outset that McMillen’s is not an account built on sweeping claims, easy prescriptions, or vitriol of a predictable political character. McMillen tells a story that is pointed and detailed, unrelenting and often exasperating, and yet surprisingly measured, not diffident but aware of the stakes of telling: “As we historians get closer and closer to the present we get nervous, because we inch closer and closer to no longer being historians” (224). McMillen pulls tuberculosis from the twentieth century into the present without sacrificing the fullness of its history. We hope you enjoy the comments on Christian McMillen’s Discovering Tuberculosis and his response.

Book forum: Christian McMillen’s Discovering Tuberculosis: A Global History, 1900 to the Present


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Tuberculosis and the Danger of Forgetting Past Failures David Jones Harvard University No disease has had more influence on the medical social sciences than tuberculosis. René Dubos famously named it a “social disease” and demonstrated its dependence on economic and political conditions. Thomas McKeown used tuberculosis to critique the pretensions of modern medicine, arguing that improvements in socioeconomic status, not medical science, explained the decline of tuberculosis. Yet McKeown’s discussion of decline is deeply misleading. While tuberculosis did decline in western Europe and North America, it never declined on a global scale. One-third of the world’s population has been exposed to tuberculosis and millions die each year. This persistence of tuberculosis requires a new history of the disease, one focused on the recent past that offers lessons for the present. Christian McMillen offers valuable contributions to this goal, especially his arguments about attention and efficacy. Despite its title, Discovering Tuberculosis, the book spends just a few sentences on Robert Koch and the discovery of the disease. Instead, it is a book about rediscovery, about how each new generation of doctors, researchers, and health officials “discovered” tuberculosis and its possible remedies, while remaining unaware that their insights had already appeared, repeatedly. From the recurring discovery of tuberculosis among American Indians in the early-twentieth century, to the ongoing rediscovery of the myriad challenges of co-morbid AIDS and tuberculosis, physicians have exhibited “remarkable historical amnesia” (174). McMillen does not pull his punches: “Discovering what is old and calling it new is at a minimum inefficient and at worst regressive” (12). How and why does this happen? Tuberculosis has been a dominant feature of the medical landscape since the nineteenth century. No one in medicine or public health could have been unaware of its challenges. Forgetfulness must have a specific appeal. In Rationalizing Epidemics, I offered a cynical account of the psychology of progressive era campaigns against Indian tuberculosis: “By forgetting, or never even knowing, that past efforts had failed, officials of the progressive era could maintain their enthusiasm for old programs of sanitation and health education. If such efforts against tuberculosis merely ran on a treadmill to nowhere, then this cycle of ignorance and rediscovery prevented government officials from getting bored of the scenery.” Have similar mechanisms been at work in the failed vaccine and antibiotic programs of the late-twentieth century?



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McMillen’s analyses of efficacy, meanwhile, revise and extend McKeown’s classic arguments. Even as McKeown critiqued medicine, he told a success story: tuberculosis had declined in England and Wales. McMillen, taking a global perspective, shows that there has not been a decline worth celebrating. McKeown argued that medicine had achieved power over tuberculosis, but it arrived on the scene too late to play a lead role in the decline. McMillen demonstrates that even when physicians and health officials had this power where tuberculosis persisted, they failed to use it successfully: “the period of greatest scientific progress and most robust institutional engagement in the fight against TB was also the time when the disease became more and more difficult to control” (70). This is a history not of medical powerlessness, but of unfilled promises, of control programs that could have been effective, but failed nonetheless. The narrative of failure forces McMillen to grapple with a difficult problem. He could cast blame widely, from the directors of the World Health Organization to the community health workers who directly observe therapy. But he explicitly avoids doing so: he has empathy for the tuberculosis campaigners and the obstacles they faced. McMillen directs the reader’s attention to the social, economic, and political obstacles that have contributed to the failure of so many programs — the social determinants of treatment access and outcome. While this might be the charitable thing to do, is it the right analytic stance? If we, as a global population, are ever to succeed against tuberculosis, individuals and institutions will need to take responsibility for controlling the disease. We need to hold them accountable for success, without blaming them for failure. We need to master the lessons of the history that McMillen tells so well. If we do, then perhaps some day there will no longer be tuberculosis to be rediscovered. David Jones, trained as a psychiatrist and historian of medicine, is the A. Bernard Ackerman Professor of the Culture of Medicine at Harvard University. His first book, Rationalizing Epidemics, examined the histories of smallpox, tuberculosis, and the explanations of health inequalities experienced by American Indians. He is now at work on a history of heart disease and cardiac therapeutics in India. Read this piece online at: http://somatosphere.net/forumpost/tuberculosis-and-the-danger-of-forgetting-past-failures



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Hope, Doubt, Paradox Erin Koch University of Kentucky Tuberculosis is a condition of paradoxes, a condition interweaved with stories of neglect, rediscovery, misconceptions (about why tuberculosis takes hold in some populations more than others, for example), and failures. As Christian McMillen beautifully demonstrates in Discovering Tuberculosis, this is not a novel situation. Tuberculosis and its framings, interventions, and responses, it seems, have always been fraught with paradoxes. This standpoint could be explored from numerous perspectives including, as McMillen examines, the absence of historical consciousness in TB-control arenas; problems controlling tuberculosis at the very moments when anti-tuberculosis efforts gain momentum and attention; and the ways in which biomedical standardization multiplies and increases tuberculosis, despite a relative, albeit misguided (e.g. neglecting HIV/TB and preventative therapies), proliferation of resources marshaled against its demise in the twenty-first century. The enduring significance of hope and doubt in driving the paradoxes (and failures) of (eliminating) tuberculosis (and TB/HIV) is particularly compelling. Hand-in-hand with despair, skepticism, and optimism, hope and doubt not only shape, but also are integral to, biosocialities of tuberculosis. For example, they have a lot of influence in driving the often large-scale rollouts of experimentation, therapeutics, and their export. Sadly, these practices usually proceed without reliable or sufficient consideration of evidence regarding how things like vaccines, antibiotics, and standardized protocols might actually take hold and take on meaning in what McMillen appropriately refers to as the “real world.” Let’s take hope. Hope for an effective vaccine. Hope for cures. And, if you are someone like me, hope that those with the social and financial capital necessary to halt and reverse such global health atrocities will acknowledge the tremendous human costs of historical amnesia. Hope (and faith, sometimes blinded by the hegemonic status of biomedicine) has a long and deep history as a driving force in experimentation and intervention. Taking seriously the long view that an historical analysis can provide, it is clear that when it comes to TB control and treatment hope and optimism walk hand-in-hand. But when accompanied by haste and blind faith, even the most well-intended (vaccine) trials and (antibiotic) treatments might translate hope into hubris. In the not-at-all-new world of TB control, hope that is not anchored to the real world leads to hubris, which leads to failure, and thus to a paradox of tuberculosis. What the world (people living with tuberculosis, their families and communities, their caretakers, and so on) really needs are hope-driven experimentation and intervention that start from the ground up, not the top down. Could real-world



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human beings who are considered from the perspectives of their daily lives be a vaccine against and cure for amnesia-driven global public health hubris? What about doubt? When it comes to tuberculosis and TB/HIV, doubt tends to walk hand-in-hand with skepticism and despair. Regarding public health this is not necessarily a bad thing. When we are skeptical or have doubts about ethics and efficacy, for example, it can mean that we are taking the lives of real-world people (past and present) seriously and thoughtfully. However, as is the case with hope, doubts about how best to prevent and cure tuberculosis and TB/HIV can work against the most well-intentioned efforts, especially when they are propelled without sufficient knowledge about or attention to the real worlds in which they will be introduced. Sometimes, as has been the case with tuberculosis, the outcome is myopic and reductionist, treating, framing and responding to tuberculosis as if it is uniform (leaving preventative therapies for latent cases and TB/HIV out of global TB efforts) or static. This, too, leads to paradoxical failures of tuberculosis. Don’t get me wrong. Like McMillen my viewpoints are not intended to simply criticize and dismiss the hard work and well-intentioned efforts of those who have and continue to work against conditions such as tuberculosis. We need biomedical techniques and technologies. We need nuanced and self-aware public health institutions and practices that see beyond questions of cost-effectiveness. But as long as the labors of global public health remain unanchored in the real world — past and present — hubris will paradoxically undermine the potential of hope and doubt in driving ethical and efficacious interventions. I’m optimistic this scenario is possible, but doubtful that it will ever come to be without a long view of history that is anchored in the real world. Erin Koch is Associate Professor of Anthropology and Co-Director of the Health, Society, and Populations Program at the University of Kentucky. Her research and teaching interests include infectious disease, human-microbe biosocialities, global health discourses and practices, and biomedical sciences and technologies. Read this piece online at: http://somatosphere.net/forumpost/hope-doubt-paradox



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Unknowing the Old Janina Kehr University of Zurich “So the Old strode in disguised as the New, but it brought the New with it in its triumphal procession and presented it as the Old.” With these words, Bertolt Brecht expressed a fundamental dilemma of modern times: only camouflaged as the New does the Old receive attention, whereas the New is present where no one suspects it, where only the Old, the accustomed, and the no-longer noteworthy is perceived. So when is something new and when is it old in our technoscientific world, where innovation is a must in the domain of medicine, and where the new turns old in next to no time? And why and for whom does it matter whether something is old or new, or framed as one or the other? Christian McMillen’s book, Discovering Tuberculosis, tells a story of the Old and the New in the domain of global public health in the twentieth and twenty-first centuries, where an “ancient disease” (10) — tuberculosis — recurs in new guises, yet also sinks in oblivion again and again, and so do the approaches to control this infectious disease. McMillen asks a single question in the beginning of the book: why can’t we control TB? He answers this question through a detailed history of failure and historical amnesia by examining TB control in othered locations and among othered populations – that is, non-white, non-Western locations and indigenous populations – be it in Africa, India, or the Americas. He concludes his book by stating that “we’ve been exploring the same terrain ever since” (224), that “history is repeating itself” and that “tragic repetition” (225) is happening over and over again. The New and the Old are undoubtedly important variables in his history of tuberculosis, which consists of historical loops and layers of time. But seen from the vantage point of the global history McMillen writes, TB control also is a story of what Nicholas King once termed “geographies of difference” (2003): TB control, at least in the twentieth and twenty-first centuries, is a story of othering relations, of shifting and powerful relations between here and there, us and them, inferiority and superiority, susceptibility, immunity, and resistance. It is in fact a story of both, Time and the Other, a story of uneven chrono-topologies. The historiographical cases of TB research, treatment, and prevention McMillen analyses in his book testify to this temporal and spatial relationality of TB control, ensnared in colonial, post-colonial, and racial power relations on a global scale. His TB history is rendered possible through the diversity of locations and archives he examines and by the overlapping temporal chronologies he uses. Such a global and, one must add, recent history of TB control has long been overdue in a



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field of research in which historians of medicine largely concluded their histories of TB with the advent of antibiotic therapy, not least lead by a stubborn, or one might say, utopian belief in ultimate disease control through scientific progress. This modern desire of epidemic control, that McMillen writes about by using such words as hubris, belief, and technological triumph, is nowhere clearer than in Susan Sontag’s poetic words in Illness as Metaphor, written during the heydays of high modernity in medicine: “For as long as its cause was not understood and the ministrations of doctors remained so ineffective, TB was thought to be an insidious, implacable theft of a life. Now it is cancer’s turn to be the disease that doesn’t knock before it enters, cancer that fills the role of an illness experienced as a ruthless, secret invasion — a role it will keep until, one day, its etiology becomes as clear and its treatment as effective as those of TB have become.” (1979, 5). Disease vanquished through medical science, suspicious secrecy replaced by enlightened efficiency. Sontag was far from being the only one who — maybe unconsciously — closed the book on TB with new possibilities of biomedical knowledge and pharmaceutical control in the 1970s. Western disease historians, medical doctors, epidemiologists, and other modern figures, as McMillen shows, contributed to the historical amnesia he attests throughout his book by relegating tuberculosis to the past, by making it what I have called a “disease without a future” (Kehr 2012), a disease that was not supposed to persist in an ever modernizing, technoscientific, pharmaceuticalised environment. Antibiotics, as McMillen clearly shows, provoked a halt in innovation and research for new treatments in the 1970s. Since then, TB is only rarely associated with scientific novelty, with cutting-edge research, with lively capital, with all those aspects that make a disease interesting, attractive, and profitable for medicine itself. And yet McMillen shows through his work that it is precisely the potential possibility of cure through antibiotic therapy that had rendered TB control ever more difficult, that made TB persist and resist. It is innovation that produces regress. It is the New that conjures the Old. It is the future that revives the Past. These are some of the reasons why biomedicine could no longer build its own future on this old disease, why biomedicine had abandoned TB in a postmodern, post-colonial world that constantly demands the New, and does not like to be “shocked by the Old” (Edgerton 2011). But what’s the future of global TB control? Its future can only lie in the past, McMillen seems to state. And historians have a role to play in providing historical evidence of past failures and successes, of past constraints and conditions of possibility, in order “to transcend them rather than nurture them” (229). This is certainly a noble goal, and it is exemplary of the history of failure and partial success McMillen recounts. Yet such a history of failure, can it not only be written if success and progress are assumed as possibilities, as still existing potentialities? What are the implicit assumptions of such a history of failure, that intends to transcend it? And what would a history of failure look like if not recounted from the modern vantage point of potential success, progress, and control — from the vantage point of modern utopia — but from the vantage point of absurdity, contradiction, and paradox? The German philosopher Karl Popper stated once:

The history of science, like the history of all human ideas, is a history of irresponsible dreams, of obstinacy, of error. But science is one of the very few human activities — perhaps the only one — in which errors are systematically criticized and fairly often, in time, corrected. This is why we can say that, in science, we often learn from our mistakes,



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and why we can speak clearly and sensibly about making progress there (Popper 1962, 215).

It almost seems as if McMillen accepts and desires himself such a modern logic of scientific progress, in which history as a discipline has its responsibilities to take. And yet he demonstrates throughout his book the fatal failures of this logic. He outlines its paradoxes in recounting the odd recurrences of TB control, where the future conjures the past and where the present can only be regress. That’s maybe why McMillen seems to only partially accept the story he himself writes, letting shimmer through a desire that TB could be controlled, that his history could be written otherwise in the future. But could it? Diseases without a future, like tuberculosis, can only exist as revenants, at least in the present. They persistently haunt modern medicine, public health, and their histories, camouflaged in new guises and old costumes. Ultra-resistant TB bacteria propelling new scientific — and potentially profitable — research, with new global health initiatives and actors like the TB Alliance or the Bill and Melinda Gates Foundation, might well be the only future for a disease without a future. Are they camouflaged versions of the Old disguised as the New, as McMillen seems to argue, by showing that resistance has been a problem since the onset? Or are they fundamentally new entities that are not recognized as such, as they are associated with the Old and Recurring? One way or the other, epidemic revenants, like TB, are not only to be seen as testimonies of failure. They are also epistemic lenses that allow us to grasp the absurdities, incongruities, and inequalities of modern disease control, their productivities and blind-spots, that are and can be understood, to be sure, but that are again and again, as McMillen shows, unknown. Works cited Edgerton, David. 2011. The Shock of the Old: Technology and Global History Since 1900. Reprint. Oxford: Oxford University Press. Kehr, Janina. 2012. “Une maladie sans avenir. Anthropologie de la tuberculose en France et en Allemagne.” Paris: Ecole des hautes études en sciences sociales. King, Nicholas B. 2003. “Immigration, Race and Geographies of Difference in the Tuberculosis Pandemic.” In Return of the White Plague. Global Poverty and the New Tuberculosis, édité par Matthew Gandy et Alimuddin Zumla, 39-54. London: Verso Press. Popper, Karl R. 1962. Conjectures and Refutations: the Growth of Scientific Knowledge. New York: Basic Books. Sontag, Susan. 1979. Illness as Metaphor. New York: Vintage Books.



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Janina Kehr is a medical anthropologist and lecturer in the History of Medicine Section at the University of Zurich, Switzerland. After a Ph.D. on tuberculosis control in contemporary France and Germany she is now working on the biopolitics of austerity in Spain. Read this piece online at: http://somatosphere.net/forumpost/unknowing-the-old



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Global Health and Transnational History

Niels Brimnes Aarhus University It is hardly necessary to note that Christian McMillen has written an enormously important book. The history of tuberculosis control — outside the West and after 1950 — has so far been severely neglected by historians. We know so much about sanatoria and social reform in nineteenth-century western countries, and frustratingly little about the biomedical remedies more recently applied to much larger populations in Asia and Africa. Discovering Tuberculosis goes a long way to fill that gap. In at least two ways, the book is bold and courageous. By taking the history right up to the present, McMillen enters the uncertain and still developing field of contemporary health policy, ripe as it is with scientific and political tension. “Our stories end,” he writes towards the end of the book, but not this one. The history of tuberculosis control cannot easily be wrapped up. The historian has left his comfort zone, and rather than deciding on the significance of what happened, McMillen needs to reflect on this uncertainty in his brief conclusion. Also, the book is genuinely transnational. McMillen brings the reader to Kenya, to South Africa, to India, to Indian reservations in the US, and of course to London, Paris, and Geneva, where organizations such as the British Medical Research Council, The International Union Against Tuberculosis, and the WHO had their headquarters. The remarkable ease with which McMillen is able to move from one place to the other, to approach the global network of TB experts from a variety of entry points — one might say that he is treading the paths of the likes of Johannes Holm, Wallace Fox, and Karel Styblo — is one of the major achievements of the book. The transnational perspective really works when it reveals the connections between the MRC in London and its activities in Madras and Nairobi. And when Johannes Holm turns up as being in charge of BCG vaccination in India in one chapter, while in another he speaks about the shortcomings of chemotherapy in Africa as leader of the IUAT. We understand the nature and the dynamics of the expert networks that made up international health in the 1950s and 60s, when results from a trial in one area are used or — just as often — neglected in another. The fact that McMillen’s history is set in so many locations also enables him to expose with particular force what is perhaps the most severe flaw in modern TB control: that drug resistance was known and debated in Kenya — among other places — in the 1950s, but was neglected in Geneva for decades and came back with a vengeance to create the contemporary global mess known as multidrug-resistant (MDR) TB.



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Yet, such achievements of the transnational perspective do not come without costs, and since I have made different — and more conventional — choices in my own writings about TB control, I take the opportunity to ask what might be lost when the historian casts off his or her geographical moorings. McMillen has a chapter on resistance to the BCG vaccine in India in the 1950s (which is based on research McMillen and I did together in very fruitful cooperation). While this is certainly an interesting episode in the history of global TB control and deserves a chapter in the book, do we miss a fuller Indian context of this episode? This is a question worth asking. In a similar vein, I was struck by McMillen’s bold assertion that decolonization was of minor importance to the efforts to develop TB control in Kenya. Could this really be? McMillen is clearly (and rightly) puzzled not to find any references to this substantial political change in the writings of those involved in TB control. But maybe he did not look from the right angle? Would a more conventional perspective, which would embed TB control more firmly in Kenyan history, have revealed that even if the TB experts did not mention decolonization, it still had a profound impact? Put in a different way, I suspect that one of the losses of the transnational perspective — exciting and revealing as it might be — is a solid understanding of the more durable state and public health structures in places like India and Kenya. Even if the transnational is currently in vogue, national structures and their development over time might still be important. Alas, you cannot accommodate all contexts into one account. I am thrilled that McMillen has produced such a bold account that takes us virtually around the globe. The history of tuberculosis control deserved such a book. Now it has got it. Niels Brimnes is Associate Professor at the Department of History, Aarhus University. He has written articles on TB control and BCG vaccination and expects to publish Languished Hopes: Tuberculosis, the State and International Assistance in Twentieth-Century India with Orient Blackswan in 2016. Read this piece online at: http://somatosphere.net/forumpost/global-health-and-transnational-history



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Global Tuberculosis – Lessons Learned, Lessons Lost

Christoph Gradmann University of Oslo History is often as much about things that have happened as it is about those which — mostly for very clear reasons — do not materialize from a historical situation that would have made them possible. The history of tuberculosis in the twentieth century that Christian McMillen is taking his readers through is an example of the latter. There are many merits to this book, which gives us the first true twentieth-century history of tuberculosis, covering subjects such as racial theories, drug therapies, tuberculosis control in American Indian communities, India, and Africa. For virtue of a pointed argument I want to focus on one that I find particularly interesting. McMillen shifts historiographic perspective away from industrialized countries and the nineteenth century to low-income countries and communities, accounting for tuberculosis as a twentieth-century concern. Tuberculosis had after all almost disappeared from the epidemiology of industrialized countries before it returned to the attention of international and later global health. There is much to learn from McMillen’s account: the history of tuberculosis after World War II in the global south is deeply shaped by its tradition in industrialized countries before. Despite the promise of future chemotherapies, harbored in the identification of a pathogen in 1882, this history evolved in the absence of highly efficacious drug therapies. Instead, tuberculosis was conceptualized as a social disease. In its epidemic dimensions, tuberculosis was controlled through hygiene and improving social conditions such as housing or nutrition. To these measures, vaccines and therapy would eventually be added. Upon the arrival of antibiotics after World War II, nobody thought that changes to the therapeutic perspective would devalue these other elements of prevention. As McMillen shows us, the pioneers of chemotherapeutic protocols — many of whom came from Britain — were keenly aware that effective therapies would make little impact if the deeper social drivers of the epidemic were not given attention. Despite best intentions, in the decades after the war came the erosion of the notion of tuberculosis as a social disease, replaced by approaches at control driven by pharmaceutical technology. As McMillen shows us, it was those long-desired and late-arriving technologies — antibiotic chemotherapies and the BCG vaccine — that, when they finally went into global distribution, sidelined approaches to control the condition that emphasized changes to social conditions. Of course, the task of fully extending the approach taken by industrialized countries to control and prevent disease in other parts of the globe would have been gargantuan, further necessitating a



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degree of welfare, public health, and clinical care that was all but lacking outside of the industrialized world. On their own, drugs failed miserably. Treatment failures in places like East Africa, where McMillen found most of his evidence, would be blamed on the patients’ failure to comply, when in fact it simply exposed the lack of medical infrastructure that helped European patients make it through what in the 1950s still was an almost two-year therapy. What evolved was a typical case of international health as a parody of medicine as it was practiced in the cool north. Short course regimes were intended to make up for the lack of resources in care, but fell well-short of that aim. The challenge of antibiotics resistance, of which there was ample evidence in the 1960s, was downplayed in favor of treating susceptible cases. Epidemiological work and systematic case finding, which had provided physicians with a road map in industrialized countries, remained rudimentary at best. The result of an exaggerated faith in technological solutions, in combination with an epidemic driven by urbanization in the global South, was an evolving disaster. Solemnly ignored in the Health-for-All 1970s, it only erupted to full recognition when the advance of HIV/AIDS resulted in MDR patients in high-income countries. Impressed by MDR patients in New York, the world took notice of an epidemic of tuberculosis that had predated HIV, but that had grown to devastating proportions in combination with it. Directly Observed Therapy Short Course (DOTS) became the preferred approach to control tuberculosis in the era of global health (from 1995), yet it suffered from some of the same shortcomings and pretensions that its predecessors in the 1960s had — it put pills at the center (in short course therapy) and ignored the social drivers of the epidemic, accelerating the development of multi-drug resistance by focusing on treating drug sensitive cases, while sidelining sensitivity testing for drug resistance. All in all, the drug-centered approach to global health has done something similar to tuberculosis as what antibiotics at large have done to infectious disease: hailed as solutions they have all but modernized the problem they were intended to solve. Drug-resistant tuberculosis is now one of the true twenty-first-century challenges that global health is attempting to control — a monster that it has created. To master that challenge it would be advisable to remember the lessons that the author of these lines has drawn from McMillen’s excellent book: any approach that does not tackle the social drivers of the global tuberculosis epidemic is doomed to result in a continuation and modernization of the problem it attempts to control. Christoph Gradmann is Professor of the History of Medicine at the Section for Medical Anthropology and Medical History at the University of Oslo, Norway. He is associated with CERMES3 in Paris through working on the ERC project GLOBHEALTH. His larger field of research is the history of infectious disease, nineteenth century to present, which he currently pursues through a history of TB-drug resistance in global health.



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Read this piece online at: http://somatosphere.net/forumpost/global-tuberculosis-lessons-learned-lessons-lost



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A Remembrance of People Lost: Epidemiology and History

Joanna Radin Yale University Back in 2003, before I set out to become a historian of medicine, I tracked media coverage of infectious diseases for the CDC’s Center for HIV, STDs, and TB. The TB part of the title, I was told, was a relict of the past and therefore not likely to appear in the news. By the time I had finished my PhD, a decade later, TB was back, and with a vengeance. But had it ever gone away? And what role had epidemiology played in turning an ostensibly curable disease into a drug resistant menace? Christian W. McMillen’s Discovering Tuberculosis: A Global History, 1900 to the Present takes on the ambitious task of providing answers. Among the most persuasive is his depiction of how dreams of total epidemiological knowledge have repeatedly been undermined by local realities. This is perhaps most evident in Chapter 9, “The Lost Promise of Antibiotics.” To treat TB effectively, antibiotics needed to be taken consistently. However, as medical anthropologists like Paul Farmer have made clear, powerful social and structural impediments to achieving “compliance” often undermine that goal.[i] Those impediments, though serious, have never been insurmountable. But the first step to overcoming them requires accepting that they exist. For reasons that are not unconnected to why people were unable to take antibiotics regularly, McMillen shows that epidemiologists found it easier to keep track of patients who completed treatment than those who began — but did not finish — a course of antibiotics. “Lost” patients were, and remain, vulnerable to relapsing with forms of infection that defy treatment. The absence of knowledge about the health status, and even the whereabouts, of these individuals, of which there were many, distorted the epidemiological portrait of TB. Because they were difficult to track, they were effectively ignored. McMillen emphasizes that surveys of TB control efforts “did not intentionally mislead” (154). Yet, even as epidemiologists acknowledged that they could not account for lost populations of patients, their reports masked an emergent public health crisis by emphasizing only the data that they possessed. Epidemiological surveys, for instance, might focus only on control efforts in specific areas, omitting reports on acquired resistance and patients who did not return for treatment. At a clinic in Ghana the files of anyone who had not returned for two years were



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discarded. Technical reports produced by the World Health Organization extrapolated only from the data about patients who had not been lost. Discovering Tuberculosis, then, can be read as a story of the dangers of confusing partial knowledge for total knowledge. This is an apt insight for a historian. “The problem of not knowing what was left out” (154), or what Donald Rumsfeld notoriously called “unknown unknowns,” is ethical, epistemological, and in this book, epidemiological. Yet, as any good historian knows, it is crucial to be aware of why the archive contains what it does and to take seriously the traces that point to what it does not. It is also crucial to understand the limitations of what any individual or institution, even when armed with the best available techniques, can know. This is what feminists have referred to as “situated knowledge” — which embraces partiality in the service of a more refined and effective form of objectivity.[ii] In the realm of TB control, a study is ultimately only as good as its ability to provide information that leads to the curtailment of infection. This is the tension at the core of McMillen’s history: the ever-widening chasm between biomedical knowledge making (predicated on idealized population laboratories and fantasies of panoptic surveillance) and the need for public health action (complicated by messy social and biological realities). Epidemiology, then, like history, may well be most effective when it reckons with the limitations of its methods. Notes [i] Paul Farmer, Infections and Inequalities: The Modern Plagues (Berkeley: University of California Press, 1999). [ii] Donna Jeanne Haraway, “Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective,” Feminist Studies 14 (1988). Joanna Radin is Assistant Professor in the History of Medicine, of Anthropology and of History, Yale University. Her research examines the social and technical conditions of possibility for the systems of biomedicine and biotechnology that we live with today. She has particular interests in the history of biomedical technology, scientific collections, anthropology, public health, humanism, and research ethics. Read this piece online at: http://somatosphere.net/forumpost/a-remembrance-of-people-lost-between-epidemiology-and-history



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Response

Christian McMillen University of Virginia It’s been gratifying and humbling to read these six thoughtful essays. I probably would have benefited from their insights before I published the book! Each and every one hits on something critical about the book, allowing me to think about the subject in new ways — even articulating elements of the story I did not fully realize were there. My major concern in Discovering Tuberculosis was pretty basic: I wanted to know why a disease that is so old and so well-known — that’s actually curable — was still killing nearly two million people per year. I came to realize that this was the main aim of the book well into the research. I had been collecting materials for some time, reading and rereading documents, all along waiting for that moment when I had immersed myself so thoroughly in the material that scholarly insight would magically appear. A novel theoretical claim or historiographical “intervention” would surely emerge. Neither happened. And so I settled on the rather more quotidian, but I think important, question of why we have failed so miserably to control TB. My answer, very basically, is that across the twentieth century TB and the various interventions designed to control it have been and keep being rediscovered as novel. Any progress made is lost as we start over and over again. I examined this phenomenon by first looking at race and TB in the decades before World War II. Focused primarily on indigenous or “native” peoples in the US and Canada, parts of east Africa, and South Africa, this section of the book demonstrates the repeated discovery of TB among these populations and the quickly and crudely applied claim that race was the reason for so much TB. Eventually, in part as a result of the introduction of the x-ray (and especially its mobile version), it became clear that these populations resisted TB as well as white people. Poverty became the explanation for TB. The book next moves to the post-war period and discusses in detail the mass BCG campaign and the roll out of antibiotics. Both, for reasons made clear in the essays, failed. Next, Discovering Tuberculosis moves to HIV and its effect on TB, principally though not exclusively in eastern and southern Africa. These chapters are concerned with trying to explain why, at the very beginning of the epidemic, institutions like the WHO considered TB and HIV in tandem; then separated them; and then joined them again in the second decade of the twenty-first century.



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As I noted in the book it was not until I had really dug into the material on TB and HIV that I began to see this process of rediscovery. I became increasingly incensed when reading, for example, documents collected in the WHO archives on chemoprophylaxis from the late 1980s and early 1990s — documents that made clear that the WHO and the researchers they supported recognized the synergistic relationship between HIV and TB. It was evident that the recent interest in TB and HIV (witness the Centers for Disease Control’s move this year to consolidate TB and HIV into one unit, the Division of Global HIV and TB) were a rediscovery of a problem abandoned in the mid-1990s. I realized that much the same thing happened with drug resistant TB: many people identified the problem as quite serious in the 1960s; very little was done. Then the problem was rediscovered as if new in the early twenty-first century. Much of the problem, as Joanna Radin made clear to me, stems from the “dangers of confusing partial knowledge for total knowledge.” When looking at race, drug resistance, and TB/HIV, people thought they knew more than they did. The claim, for instance, that chemoprophylaxis for TB in HIV+ people was not cost effective was a claim based on little actual data and a lot of assumptions. Arguing that race explained susceptibility was done in the near total absence of any epidemiological work on the populations subjected to such claims. Armed with only partial knowledge, but thinking they were in possession of sufficient knowledge, many TB workers made considerable errors. But this was not the only problem. As I suggest in the book, those in the world of TB control have little or no historical consciousness; they are always on the hunt for the new and novel. This is of course not a condition exclusive to those who work in global health. But that does not make it any less troubling to see things being rediscovered as novel when in fact this is not so. But in explaining all the failures Discovering Tuberculosis so depressingly narrates, David Jones notes I was hesitant to castigate those working in TB control. He’s right: I was much more inclined towards identifying overarching ways of seeing things, such as the near obsession with cost effectiveness that took over global health in the 1990s, than grappling with the responsibilities of individual actors. That said, I agree with David: “If we, as a global population, are ever to succeed against tuberculosis, individuals and institutions will need to take responsibility for controlling the disease.” Along these lines I do think that the book makes clear that the WHO does bear considerable responsibility for the disasters they had a hand in creating: drug resistant TB and the co-pandemic of TB/HIV. Speaking of failure: Joanna Kehr wonders if my history of failures, if it is to meet its goal of helping people to transcend rather than nurture failure, must be predicated on a notion of progress. Do I, like Karl Popper, Kehr wonders, believe that we can learn from mistakes and make progress? I suppose that I am, perhaps naively, hopeful. But does this contradict my book? Is my hopeful belief in the possibility of progress at odds with the cycle of failure I chronicle? Perhaps. But as I make clear in the book I am not offering an ending; the book marches right up to the present moment (or the moment when I had to turn the book into the press) and purposefully does not make a claim about the irreversibility of the history I’ve written. I’m content both narrating failure and remaining hopeful. It’s possible that in my hope I am like some of the characters in the book. Yet I’d like to think that I am not, as those in my book are, driven by hope solely as a tonic against



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despair. Rather, as Erin Koch suggests, I think that recognizing the “tremendous costs of historical amnesia” is a possibility in toning down some of the hubris-driven public health campaigns. Of the many challenges in writing Discovering Tuberculosis, one of the most daunting was veering into historical and historiographical terrain with which I was almost entirely unfamiliar. As Christoph Gradmann points out, the book is about the twentieth century and concerns itself not at all with the rather more well-known history and historiography of TB, and other diseases, up through the advent of antibiotics. As such, it’s a story that has more in common with Randall Packard’s work on post-World War II malaria control than it does (as David Jones notes) with Thomas McKeown’s on the decline of TB in England and Wales. Gradmann helpfully makes clear that much of Discovering Tuberculosis is about the “erosion of the notion of tuberculosis as a social disease in favor of approaches driven by pharmaceutical technology.” This process of erosion could only happen after antibiotics. While I did not put it nearly as succinctly in the book, Gradmann is right. But to come to such a conclusion meant stepping into a field — medical history — which I previously knew nothing about. (My first book is on American Indians and land claims.) I did so with some trepidation and, I hope, a healthy does of respect for the work that has come before mine. It was only after familiarizing myself with the field that I learned that a book on TB in the post-war period was necessary. Yet, I was not only venturing into medical history. Niels Brimnes points to what was one of my biggest concerns when working on the book: would I mangle, oversimplify, simply get wrong, or what have you the many local histories I would necessarily skirt over as I attempted to write a global history? Luckily, Niels seems to think the book came out okay, but still asks, rightfully, what is missing when a book like mine so casually considers something like Kenyan independence? Niels asks, “Would a more conventional perspective, which would embed TB control more firmly in Kenyan history, have revealed that even if the TB experts did not mention decolonization, it still had a profound impact?” It’s an excellent question. And Niels is surely right: something is lost in the transnational approach. National structures are critical to understanding TB control on the ground in a place like Kenya and I would be delighted to read a more locally nuanced version of the story. There were times, in fact, when I was concerned that I was not going deep enough into the local or national context — when it came to American Indians, for example, as this is the field I knew best when embarking on this project. Was I helping readers enough to understand the context for the BCG trial? Should I say more about reservation conditions or the reforms instituted by John Collier, the Commissioner of Indian Affairs, in the 1930s? I chose to be as superficial with American Indian history as with others! That choice could have been a mistake. There were times, too, when I wanted to say more about something local and simply did not have the time or resources to do the research. I wrote in some detail about a successful TB control program run out of the Kibongoto Clinic in Tanzania in the late 1950s and early 1960s. But everything I knew about it came from the published medical literature rather than archival sources — sources that might have revealed details that would have allowed me to say something more substantial. Because it was so unique and so successful I wanted to know more. But, alas, it was not to be.



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Again, I am grateful for the thoughtful commentaries on my book. Each of the essays displayed a careful and thorough reading and offered me much to think about. Christian McMillen is professor of history at the University of Virginia. In addition to Discovering Tuberculosis, he is the author of Making Indian Law: The Hualapai Case and the Birth of Ethnohistory, as well the forthcoming Pandemics: A Very Short Introduction. Read this piece online at: http://somatosphere.net/forumpost/response

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