Social Medicine and the Challenge of Bio-Social Research

Paul Farmer

 

The sociology of knowledge must concern itself with whatever passes for ‘knowledge’ in a society, regardless of the ultimate validity or invalidity (by whatever criteria) of such ‘knowledge’. And in so far as all human ‘knowledge’ is developed, transmitted and maintained in social situations, the sociology of knowledge must seek to understand the processes by which this is done in such a way that a taken-for-granted ‘reality’ congeals for the man in the street. In other words, we contend that the sociology of knowledge is concerned with the analysis of the social construction of reality.

Peter Berger and Thomas Luckmann, The Social Construction of Reality

 

Introduction

This paper will examine social medicine as a necessarily interdisciplinary enterprise. It will draw on examples from clinical practice in the area of infectious diseases and also on work as an anthropologist seeking to understand the ways in which culture determines how health problems are construed as solvable or intractable. But this is neither a clinical review nor an ethnographic study; instead, I will attempt to address a couple of vexing medical problems from a sociology-of-science point of view.1 That is, I will look at the rise of antibiotic-resistant microbes - indisputably a biological process with social roots - and then examine critically a number of claims staked in the medical and public health literature.

Any social scientist examining the production and dissemination of knowledge about tuberculosis - a classic, "social disease" with deep roots in Europe - would agree that we need the tools discussed here by Yehuda Elkana if we are to understand complex bio-social phenomena such as the emergence of drug resistance. These tools encourage us to take a step back and ask: What are the epistemological frameworks driving clinical and public-health practice as well as basic science research? What frameworks drive health policies? What are the historical underpinnings of these frameworks and how are they institutionalized? We need the contextualizing tools of sociology and anthropology if we are to understand what is happening right now with tuberculosis. Although the disease has plagued humanity for centuries, it is now changing rapidly on a molecular level.

I have the good fortune to work with colleagues who welcome such contextualizing perspectives. The Department of Social Medicine at Harvard Medical School has long been quite interdisciplinary and transdisciplinary. In this department are surgeons, philosophers, internists, and anthropologists; qualitative and quantitative methods are welcome. Many of the faculty are trained in medicine as well as a social science. In this setting, anthropologists and other social scientists are encouraged to study the development of scientific knowledge and policy as socially constructed.2 In fact, anthropology in itself is considered a "basic science" at Harvard Medical School, a fact which amuses some on the other side of the Charles River, where the Faculty of Arts and Sciences is found.

Anthropologists are famous for adopting their tribes. Many have noted the "my-tribe syndrome" in anthropology: every social event or process is compared to its analogue within the culture of the "tribe" with which the anthropologist did long-term fieldwork. I have spent over fifteen years working in rural Haiti as an anthropologist and as a physician, so my "tribe" was for years the Haitian peasantry. But in more recent years I began to study another tribe, one based in the world’s capitals - Geneva, London, New York, Washington. It is hard to discern the social outlines of this tribe, at least initially. But those who set international health policy have a great deal in common. The tribe speaks many different languages, but has shared, elaborate representations of what it is trying to do, and so comes to learn a shared language and complex culture, which may be described as transnational.

In other words, I look at international health policy as an anthropologist might. Needless to say, this is not always welcome. Yehuda Elkana reminds us that this is not unlike what a historian of science does or tries to do, with the difference being that I am something of an ethnographer of science, or the lack of science, in the international health arena. Obviously I am engaged in a specific way, since when considering the health problems of the poor, I am also a clinician who treats the disease in question. I should therefore like to examine a specific problem, tuberculosis, in three ways. First, I will follow others in examining "problem choice". Why did this problem present itself to me personally and to our group, which is very much an interdisciplinary group? Why do so many with a perfectly treatable disease die of tuberculosis? I will then address the emergence of drug-resistant tuberculosis as a problem that is itself resistant to disciplinary perspectives. A single discipline cannot hope to unravel the dynamics of what is fundamentally a socially-induced molecular change. Finally, I want to look at some solutions in a very pragmatic and perhaps almost prosaic sense. In so doing, I hope to show that the production, content, and dispersal of "scientific knowledge" about this disease is shaped by ideology and by a series of hegemonic (and thus unexamined) ideologies tied tightly to neoliberal economics.

 

1. Problem choice in research

Tuberculosis is as compelling a research topic now as it was over one hundred years ago when it was one of the classic diseases studied by social medicine. Indeed, tuberculosis and "venereal" diseases were long called "social diseases". Well over a century after Rudolf Virchow - considered by many to be the father of social medicine 3 - tuberculosis and a sexually transmitted pathogen are the leading infectious causes of adult death in the world today. 4 Then, as now, poverty and social inequalities sculpted the contours of a global pandemic. But there is something new under the sun: the development of antibiotics that, if used promptly and correctly, cure every case of tuberculosis. There are also treatments that can transform AIDS from an inevitably lethal condition to a chronic but treatable disease.

In rural Haiti, where I have worked since 1983, tuberculosis is probably the single leading infectious cause of adult death today, one hundred and ten years after Robert Koch’s famous discovery. It is therefore very interesting, from the perspective of a sociologist of science, to hear tuberculosis termed an "emerging infectious" or a "re-emerging" disease. Tuberculosis never went away. The mortality rates globally have not shifted that significantly, although of course there have been massive local shifts. Only from a highly particularistic point of view - that of the Western wealthy - could one speak of tuberculosis as a re-emerging disease.

Haiti is known to some of you as the poorest country in the Americas. With a gross national product of about four hundred dollars per person per year, all of Haiti is poor. But there is always a local history undermining the poverty of any place created as a slave colony, and Haiti’s Central Plateau is no exception. In the nineteenth century, after a successful slave revolt made Haiti the first independent republic in Latin America, the former slaves turned their backs on the plantation system to become peasant farmers. 5 By their own accounts, they were cash-poor "but had enough to eat, because we had land". For the people farming the broad banks of the upper Artibonité River, all this changed in 1956. As a "poverty-reduction program" funded by what was the precursor of the World Bank, a modern hydroelectric dam was built in the Péligre gorge (Figure 1). 6 The local inhabitants blame their current poverty on landlessness.

Figure 1: Hydroelectric dam in the Péligre gorge, Haiti.

 

All sorts of ironies abound in development work: the World Bank has become, interestingly enough, the leading funder of tuberculosis control in the world, replacing the World Health Organization as the major funder behind many interventions. 7 And yet the building of this dam, a product of development ideologies, undoubtedly increased rates of tuberculosis in this area of Haiti. The flooding of a fertile valley resulted in massive land loss, driving struggling peasant farmers to the arid hills above the area in which the dam was built.8 The families who lost their land to the hydroelectric dam were not compensated or resettled. The obvious things ensued. Driven up into what they call "rocks with teeth," the former valley dwellers fared poorly (Figure 2). People often ask how they survive. The answer is, they often don’t. Children in this area are still likely to show the stigmata of malnutrition, but so, in fact, do their parents. Mortality rates were appalling in the decades after the valley was flooded.

Figure 2: The arid hills above the area in which the dam (Figure 1) was built.

 

One of the diseases that has most plagued this displaced community is tuberculosis in all its many forms. Most patients have pulmonary tuberculosis, a disease that can be diagnosed and treated expeditiously and cheaply. Pulmonary TB is the contagious form. Extrapulmonary tuberculosis, however, is harder to diagnose and sometimes harder to treat. But it is often just as lethal.

Let us look at an instructive case, that of a young woman who came to the Clinique Bon Sauveur in central Haiti. She had been sick for many months with weight loss, shortness of breath, and later, fever. Her hair fell out and she eventually became so fatigued she could hardly stand. She had almost given up her quest for medical care. International health policy offers a set of very clear guidelines as to how to diagnose a case of tuberculosis. Most importantly, according to international guidelines, the patient must have what is called in the jargon a "positive smear". Specifically, microscopic examination of the patient’s sputum, dyed with special stains, must show evidence of the microbe. One reason I bring up this specific test is that it is only marginally different from the one that was discovered here in Germany over a century ago.9 One may wonder whether this is because the technology did not need to be improved. The answer is: not at all. The Ziehl-Neelsen smear is an insensitive and non-specific test. No new anti-tuberculous agents have been developed in over thirty years.10 The absence of development of new tests, new diagnostics, and new therapies for tuberculosis is not related to overall need for better tests, nor could it be related to the global burden of disease. Here we see how "problem choice" in research may be related to the perceived purchasing power of the afflicted.11 Yet although the research and development institutions are quite willing to provide funding for projects such as the hydroelectric dam mentioned above, funding for research into the diagnosis and treatment of tuberculosis is pitifully limited.12 These again are the sort of ironies that make the modern tuberculosis epidemic interesting from a sociological perspective as well as from local, medical, or even ethnographic perspectives.

Another question is: How good are the guidelines, how good are the diagnostics, and how good are the therapeutics for patients like this young woman in Haiti? How well is she served by existing policy? The answer is, not very well at all. This patient, it turns out, had extrapulmonary tuberculosis, undetectable by smear microscopy of the sputum. According to certain international guidelines, she therefore did not have tuberculosis. I am overstating this, of course, but tuberculosis programs are instructed to restrict diagnostic testing to smear microscopy of the sputum on the grounds that it will detect the majority of infectious cases. Yet the young woman responded immediately and spectacularly to empiric tuberculosis therapy (Figure 3). Existing guidelines and algorithms designed to diagnose and treat tuberculosis did not serve her well. The justification for restricting "problem choice" to the identification of smear-positive pulmonary tuberculosis is that it is these patients who infect others. But as we shall see in examining a form of pulmonary (infectious) tuberculosis that is difficult and expensive to treat, the public health mandate is not the most important one in international public health. It is, rather, the mandate to decrease expenditures.

Figure 3a, 3b: Young woman in Haiti suffering from extrapulmonary tuberculosis before and after the treatment.

 

2. Policy, evidence, and multidrug-resistant tuberculosis (MDRTB)

The case I will present next is also a transnational case. A dam and certain health policies are transnational phenomena in that they are developed in one place and implemented in another very different setting. But what happens when the double standards are challenged because a single person, afflicted with hard-to-treat tuberculosis, moves from a place in which "low-cost" cure is the rule to one in which the sky is the limit, in terms of medical costs? In 1994, a relief worker returned to the United States from Peru with what appeared to be active tuberculosis. He did, in fact, have disseminated tuberculosis. He was admitted to a Harvard teaching hospital where he was treated with four powerful anti-tuberculous agents, rifampicin, isoniazid, ethambutol, and pyrazinamide. These are termed "first-line" antituberculous drugs. They are powerful, they are off-patent, and they are very inexpensive. Again, this treatment regimen has not changed in a long time; all these drugs are thirty to fifty years old. But this patient died shortly thereafter, and cultures of his sputum and his blood grew out a strain of Mycobacterium tuberculosis resistant to those four drugs. In other words, this U.S. citizen died in Boston of "multidrug-resistant tuberculosis" acquired in Peru.

What is to be done next in such a situation? A tuberculosis specialist might suggest "active case-finding". That is, tracing the close contacts of the patient who had died in order to see if other deaths might be averted through rapid case detection and treatment. But the patient had come directly from Peru, and the State of Massachusetts was not about to do international case-finding. Yet just a few years after Massachusetts judged such measures heroic and beyond the scope of their obligations, it could also report that over sixty percent of Massachusetts tuberculosis patients were foreign-born.13 The same is true in Germany, which also does not do transnational case-finding.

What do we know about tuberculosis in Peru? I mentioned earlier that I had turned my attention from the tribe based in rural Haiti to the tribe based in cities like Geneva, Paris, and Boston. Were there cultural artifacts that might help us to understand what was happening in South America? The World Health Organization’s TB Treatment Observer presents the following epidemiological forecast: it is raining MDRTB over Columbia but in Peru tuberculosis is being defeated by a model DOTS program (Figure 4). 14 DOTS means "Directly Observed Treatment, Short-course". It is the treatment and management strategy favored by international tuberculosis experts and very effective at diagnosing and treating cases of smear-positive pulmonary tuberculosis caused by strains of M. tuberculosis susceptible to all first-line drugs. But what about extrapulmonary tuberculosis, as in the first case presented? What about tuberculosis caused by drug-resistant strains? The forecast for such patients is much less favorable. I think that any sociologist or historian of science would be interested in this image as a cultural artifact.

Figure 4: Epidemiological forecast presented by the World Health Organization’s TB Treatment Observer.

 

We did go to Peru and we did not find as sunny a picture when we went there. The man who died had been working in an urban slum in northern Lima. The publication cited above reported that tuberculosis in Peru is "being defeated by a model DOTS program". That may well prove true in the long run, but upon closer inspection you will get a different picture. First of all, rates of tuberculosis among young adults were as high in the slum as those in Haiti or even in sub-Saharan Africa (Figure 5).15 Furthermore, some of the patients who had been treated with DOTS were still sick with active, infectious pulmonary tuberculosis. If one takes sputum samples from them and grows them in the lab (again, the same way it was done one hundred years ago), and then tests these isolates for susceptibility to first-line drugs, 93.8 percent of the one hundred and sixty cases tested had multi-drug resistant tuberculosis. 16

 

Figure 5: Estimated prevalence of all forms of active TB, Carabayllo 1993. Calculated from Carabayllo TB Central Program Data.

 

Multi-drug resistant tuberculosis is defined by convention as any strain of M. tuberculosis resistant to at least the two most powerful first-line drugs, isoniazid and rifampicin. What will happen next, if more than a hundred patients living in a crowded slum are sick with untreated MDRTB? In a recent editorial in the European Journal of Public Health, we argued, tongue in cheek, that we believe that MDRTB will spread because we believe it to be an infectious, airborne disease.17 As one might expect on looking at the Peruvian households we investigated, what happens inside them is that everyone becomes infected; many become sick and die18 (Figure 6). We also argued that current recommendations - treat all patients with first-line drugs only - needed to be updated as the organism was "updated" genetically.19 The idea of a transnational epidemic and the need for transdisciplinary and innovative interventions based on epidemiology should not have been shocking, but was in fact received as hearsay by some in international health circles.

 

Figure 6: Seventeen Peruvian households clusters with MDRTB patients.

 

As mentioned above, it is less the imperative of protecting the majority and more a desire to reduce expenditures that drives forward many policies and algorithms. MDRTB makes this point more clearly than any disease - unlike extrapulmonary TB, it is contagious. Let me return to a sociology-of-science perspective and examine some rather emphatic statements regarding drug-resistant tuberculosis from the architects on international tuberculosis policy. I would like to "unpack" some of these statements: For example, "DOTS is our only available hope for preventing a plague of incurable drug-resistant tuberculosis from worsening and terrifying in unimaginable proportions."20 That is strong language. It singles out one particular intervention not only as the best but the only rational one. In Haiti, this is exactly the strategy that we use - DOTS - because it is very effective wherever rates of drug resistance are low. The cure rates among patients with smear-positive pulmonary tuberculosis are well over ninety-five percent in the catchment area around the clinic where we work. Mine is therefore not a critique of a particular intervention, rather it is a step back to look for second-order objectification, and the ideology and hegemony which underpin it, in international health policy.21

As already mentioned, DOTS stands for "Directly Observed Treatment, Short-course". Short-course chemotherapy (SCC) is based on isoniazid and rifampicin. But, by definition, someone who has MDRTB is sick with strains resistant to those drugs. It logically follows that using only DOTS, cure rates are going to be low if drug-resistance is high. In the former Soviet Union we see ample evidence of this. A remarkable study, not yet commented upon by sociologists of knowledge (to say nothing of ethicists), shows that there is, in a certain Russian oblast, a five percent cure rate of documented MDRTB when SCC is used.22 This is interesting because it means that culture and susceptibility data were available prior to therapy and SCC was given anyway.23 Although data and good sense both indicate that one would not want to use short-course chemotherapy for patients who are resistant to the two main drugs in the treatment regimen, this is precisely what may happen when DOTS is pushed as the sole TB treatment strategy. A five percent cure rate means that most of the remaining patients either died or remained sick - and infectious. Using this particular strategy - blessed by the international health community for all patients - may have meant a managerial success, but it also meant clinical failure.24 For most people - patients, family members, doctors, nurses, and others - managerial success is not the ultimate goal of clinical practice. Clinical success is.

Other emphatic statements suggest that this ostensibly arcane debate is indeed a subject worthy of the attention of sociologists and historians of science: "DOTS makes it virtually impossible to cause patients to develop incurable forms of tuberculosis that are becoming more common."25 Another interesting claim: "Other treatment strategies are actually causing multi-drug resistant tuberculosis and maybe doing more harm than good."26 With regard to the first claim, it is simply false, as we know from empirical research and experience. DOTS can sometimes "amplify" preexisting resistance. A second round of SCC - again, strongly recommended by international health experts for all who fail the first round - can further amplify drug resistance. This is not a theoretical model. We know patients who present with drug-resistant disease, receive DOTS, acquire more resistance to more drugs, then get the officially recommended re-treatment regimen, only to pick up resistance to a fourth or fifth drug. Many infectious disease clinicians would predict this outcome, but clinicians are not driving these policies forward. Granted, clinicians have their own sorry history of dealing with tuberculosis, a failure that is already the subject of a good deal of commentary.

It is not that clinicians deserve praise in this realm. It is simply that clinical concerns are not driving these policies forward. Nor is protection of public health the paramount concern. It is, rather, the reduction of public health expenditures that figure prominently in the era of "cost-effectiveness". In this situation, ideology is shaping not only the dissemination of knowledge - through the promotion of officially condoned treatment strategies for tuberculosis - but also to the very construction of our categories of evidence. Take the example of smear microscopy, discussed above, as a gauge of cure. Many patients said to be cured of MDRTB by DOTS are only transiently suppressed. The patients will relapse as soon as therapy stops, or shortly thereafter. On official records, however, they were labeled as cured. Our own patients, sick with MDRTB after having been reported as "cured" with DOTS, figure among the published percentages "cured" by DOTS.27 Thus are categories of knowledge, and results also, sculpted, by what can only be described as zealous application of a particular management strategy.

Let us consider this problem of evidence categories at the level of the family. Here is a young woman, her husband and their children (Figure 7). She comes from what is called a "TB family". Eight of her siblings are either dead from or have MDRTB (Figure 8). This woman even changed her name in order to obtain treatment again, after she was told that she was a "problem patient". Her husband, who had been caring for her, became ill with cough and weight loss. When acid-fast bacilli were found in his sputum, it was assumed by many that he would also have MDRTB. In order to avoid amplification of resistance, it would have been wise to initiate therapy as if he did have MDRTB, awaiting confirmation by laboratory testing. He was, however, given the same empiric DOTS regimen because that was what the public health community suggested be done for all newly diagnosed patients. In Peru, all new smear-positive cases received the same treatment, regardless of their history of exposure to drug-resistant strains of M. tuberculosis. Managerially, this is certainly an easier strategy than considering the subtleties of each case. But clinical outcomes and other data are sometimes dismissed as irrelevant when an algorithm is elevated to the level of hegemonic discourse. Every month the husband would go in and have his smear checked, and he would still be positive - unsurprising considering that he had MDRTB and was receiving a treatment that could not cure it. Also unsurprising: the young man wanted to stop the treatment that could not cure him.

Figure 7: A young woman, her husband and their children from a "TB family".

 

 

 

Figure 8: Eight of the siblings of that young woman are either dead from or have MDRTB.

 

He was forced to sign a document when he said that he was no longer going to take first-line anti-tuberculosis drugs. And this paper reads "I am not going to take my therapy any more because it makes me feel sick, nauseated and I am withdrawing from treatment." This twist in the story is relevant on several levels. Obviously the experience is relevant on the level of human suffering. (Both his own medical care and the possibility of transmission of the disease to their children may profitably be discussed at this level.) It is important on the level of policy. It is also important on the level of recording data. If a patient has a piece of paper like this in his file he is considered to be a "problem patient". But there are two ways to classify MDRTB. One is to acquire it through inappropriate treatment - usually attributed to the "non-compliant" patients - and this was the framework at play in this case. But another course is to be initially infected with a drug-resistant strain, which is called primary MDRTB. Now this young man will, of course, never be counted as having primary MDRTB. By definition - as the piece of paper in his file shows - he is a treatment "defaulter" and has acquired MDRTB. When we tested the strain causing his sickness, we found similar DNA "fingerprints" to those causing sickness among other members of the family (Figure 9). This strongly supports our contention that this patient became ill with primary MDRTB by being in close contact with his wife and eight in-laws, all sick with the disease.

 

Figure 9: The strain causing the sickness of the young man (Figure 7) had similar DNA "fingerprints" to those causing sickness among other members of the family. This shows that this patient became ill with primary MDRTB.

 

I would call this a bio-social analysis, as it moves from sociology and political economy to the molecular level. This could only be achieved by a transdisciplinary, multidisciplinary team composed of a group that included clinicians, anthropologists, epidemiologists, and bench scientists doing the molecular epidemiology. The problems with both the policies and the therapies might otherwise not have been apparent. It now appears that conventional epidemiology underestimates quite significantly the levels of epidemic transmission of MDRTB as gauged by using molecular diagnostics. The last thing that we would want to be, in the sociology of science, is Luddites who do not use new molecular diagnostics. They come in handy when we are attempting to understand such a complex set of bio-social processes. And the broader the net is cast, the more likely that our analyses will lead us back to the political economics of international health.

 

3. The ideology of cost-effectiveness

Let me return to my tribe. The specific strategies described above are sometimes pushed by data and statistics by larger epistemological frameworks with ideologies behind them. We would like to know what these frameworks and ideologies might be. What are the competing agendas here? The most commonly encountered response to this question is that there is a struggle between clinical and public-health approaches to the problem of tuberculosis. The public-health approach would be focused on preventing transmission above all, which is the reason that extrapulmonary tuberculosis tends to be ignored in the public-health literature. But as the example from Peru shows, prevention of transmission is not the primary concern of those arguing that DOTS will suffice for MDRTB. Reducing costs is the primary concern in public circles. This is stated quite explicitly by the WHO: "In many high TB prevalence countries, second-line drugs are prohibitively expensive and unavailable. ... Multi-drug resistant TB is therefore often untreatable."28 Some very interesting hypotheses underpin these assertions. Let us look at the first one. The assertion is that MDRTB is an untreatable disease in a "resource-poor setting". That, by the way, is the latest euphemism for settings of poverty.

Is MDRTB really untreatable in poor countries? A group of these people, many of them slum-dwellers and patients themselves, have tried to answer the question by building a coalition to respond to the problem of MDRTB. Youths from the barrio were trained as DOT - but not DOTS - outreach workers. When the correct drugs were used, what were the cure rates obtained? Far from being zero, as had been predicted, the cure rates of the "incurable" chronic MDRTB patients exceeded eighty percent.29 Furthermore, the patients did not, as predicted by skeptics, abandon therapy because of side-effects (seven percent of the first cohort of seventy-four abandoned therapy).30 In later cohorts, the percentage of patients abandoning therapy decreased further as patients became aware that there was, in fact, effective therapy for drug-resistant disease. Through this small-scale project alone, multiple hypotheses presented as facts by the most powerful organizations in the international health policy arena were proven untrue.

Considering the high cure rates among our patients, we believed that ours was a good intervention, and thought that perhaps we would get a pat on the back for it. It certainly had a large impact on the community, training people who were otherwise unemployed and making use of local resources. It restored faith in the broader public health agenda, a faith that had been undermined for many who had watched their neighbors die of tuberculosis while listening to the media claim that the tuberculosis program in Peru is the best in the world. But we did not receive unstinting praise for this effort and for years did not get the public-health approbation needed to "scale-up" this approach and serve other populations.

So our group spent a lot of time thinking about why so many were saying that you cannot treat MDRTB (and HIV as well - another story) in settings of poverty. We even started calling what we were doing "DOTS-Plus" in an effort to win approval from the international TB community, which seemed to be obdurately focused on advancing a single agenda for tuberculosis treatment. We started studying all the objections (Figure 10). First, it was supposed to be too expensive. But the drugs had been off-patent for decades. Pooled procurement and other innovations could and did drop drug prices dramatically.31 Next, it was argued that DOTS alone sufficed to turn around the MDRTB epidemic in New York City. This was not true. Careful reanalysis of the epidemic there showed that it was not a single strategy; there were multiple interventions and of course people with MDRTB were treated with the right drugs.32 Less than half of New York patients received DOTS before the epidemic began to fade.

 

Figure 10: Common objections to DOTS-Plus.

 

DOTS was supposedly sufficient in resource-poor settings. But in the newly declared resource-poor setting of the former Soviet Union, DOTS does not give high cure rates, even in projects supervised by the international experts of the tuberculosis world. In the past decade, rates of tuberculosis have risen sharply in Russia even as cure rates have fallen. During the first five years it was easy to blame the Russians, and the international tuberculosis experts were happy to do so. But in more recent years it has been harder to attribute failure to Russian TB experts because DOTS programs, in partnership with the international organizations, have also had low cure rates. This is due in large part to drug resistance.

Another objection to DOTS-Plus is that it was too difficult technically. We did it in Peru and Haiti, and if you can do something in Haiti, I think you can make the argument that it can be done just about anywhere. Finally, what about the argument that DOTS-Plus is not cost-effective? The idea that treating MDRTB in resource-poor settings is not cost-effective obviously depends wholly on two things: cost and efficacy or effectiveness. We had documented that repeated empiric regimens - that is, getting the same medicines again and again - were ineffective and costly. These treatments were also a source of acquired drug resistance through changing the genetics of the microbe and also changing the host, the human, whose lungs were damaged badly by ineffectively treated tuberculosis.

Allow me to go back and re-examine the problem from the point of view of what is boldly called "management science". Take the example of one second-line drug manufactured by a giant pharmaceutical company. On a given day the cost of this drug in a Boston teaching hospital is thirty dollars a gram. In Peru it is twenty-one dollars. In France shortly thereafter it is sold for less than seven dollars per gram (Figure 11). Same company, same drug. How can this be considered rational drug use? Since this is a disease that has not affected many people in affluent settings, there is no vocal lobby for it. There are no organized patient groups. (This in itself is amazing because there are so many patients.) But of course the patients are poor and marginalized and therefore do not constitute an effective lobby. What would happen if one tried to organize a task-force solution and make common cause with the World Health Organization, Médécins sans Frontières and other international groups? Would the prices drop? We began organizing - with pharmaceutical companies selling both generic and "branded" medications - such a coalition. It took a few years to get in to the right people, but we were able to drop the prices quite significantly in the space of one year.33

Figure 11: Cost comparison for one gram of capreomycin.

 

I will close my remarks with an example prepared specifically for Germany. Drug-resistant tuberculosis is not a problem that can be ignored much longer in Europe, because the largest epidemic reaches into Europe. Many of you have read about the "mortality crisis" in Russia. After the collapse of the Soviet Union, life expectancy began to drop, especially for men. In recent years, the deaths from cardiovascular disease have started to decline again and the mortality crisis in general has started to improve. But tuberculosis remains rampant in Russia. Tuberculosis has continued to increase in incidence and prevalence every year for the last ten years until it has reached levels five times what is seen in the rest of western Europe and three times what was registered in the former Soviet Union.34 This is a new epidemic that still has not abated. It is prison-seated, just like the New York MDRTB epidemic once was. This is a patient population similar to those we treated in New York: young adults, mostly men. In the prisons of the former Soviet Union the mean age of tuberculosis patients is twenty-nine and dropping. Their crimes are mostly crimes against property - petty larceny, for example - and related to the social upheaval registered throughout the region. The big difference is that the Russian epidemic is so much larger. Furthermore, most prisoners with tuberculosis who have drug-susceptibility tests performed on their sputum are revealed to be sick with drug-resistant disease. Therefore this is not only an epidemic of tuberculosis in Europe, but an epidemic of drug-resistant tuberculosis.

 

4. Conclusion: public health and the sociology of managing inequality

 

To understand the state of the socially constructed universe at any given time, or its change over time, one must understand the social organization that permits the definers to do their defining. Put a little crudely, it is essential to keep pushing questions about the historically available conceptualizations of reality from the abstract ‘What?’ to the socially concrete ‘Says who?’

Peter Berger and Thomas Luckmann, The Social Construction of Reality

 

The sociology of science often shows us how knowledge held to be scientific arises instead from unacknowledged ideological frameworks. Like other forms of knowledge, science is social constructed: everything from research problem choice to the interpretation of data is influenced by the factors that influence other human affairs. What is true of the natural sciences is even more so for those termed social sciences. Lewis Thomas once termed medicine "the youngest science".35 Only recently has the scientific method made its way into what has often been termed an art. Public health, for all its obsession with the quantifiable, is similarly vulnerable to distortion.

I have attempted to apply a sociology-of-knowledge approach to recent claims about how best to understand, and to manage, a new variation on an old disease. Tuberculosis has long been a scourge of the poor, but a number of fundamentally bio-social events have changed the stakes in recent years. First, the advent of effective therapy changed mortality rates for those who had access, removing tuberculosis from the list of potentially fatal infections for the affluent even as it remained the leading infectious cause of adult deaths in the poor world. The advent of therapy led, as with other pathogens, to the emergence of drug-resistant strains. Then came HIV, which changed the stakes further: co-infection with HIV often awakes quiescent infection with M. tuberculosis.

Clearly, bio-social events such as these - which reflect the ever-changing interplay between the large-scale social forces that shape the distribution of disease and the genetic changes among the microbes - are not readily understood without interdisciplinary research. Nor are the health and research policies that reflect and aggravate growing social inequalities. As tuberculosis and AIDS top the list of infectious pathogens causing millions of deaths annually, there are no new antituberculous drugs and no plan to move anti-HIV drugs to places in which they are needed most.

The examples used in this presentation are not meant to impugn the architects of global tuberculosis control policies but rather to show how ideological templates come to sculpt these policies and how they are played out in the poor communities in which tuberculosis takes its toll. Why would policies ignore drug-resistant and extrapulmonary tuberculosis? I argued here that the recent debates about difficult-to-treat chronic infectious diseases are less about competing agendas between medicine and public health and more about the struggle to reduce expenditures on behalf of the health of the poor. Indeed, it is an unchallenged truism that "we are living in a time of limited resources" and thus must "make hard choices". It is rarely remarked, in response to such confident claims, that these resource are less limited now than ever before in human history. As science and technology become dominant forces in medicine and public health, they are improving outcomes of the fortunate few. For others, we are reduced to managing inequality.

The leading calculus of these times, at least in international public health, is "cost-effectiveness". Presented as scientific and "evidence-based", the cost-effectiveness approach attempts to gauge the health impact of particular health expenditures. Increasingly, in the poor communities in which tuberculosis takes its toll, public investments in health must be reserved for interventions shown to be cost-effective. The World Bank and other international institutions have promoted certain approaches and interventions as "excellent investments", often using economic arguments to justify health outlays.

The idea that such discourses and tools for analysis might themselves be more ideological than evidence-based is one that is met with a good deal of resistance in international health circles. Indeed, "Antiviral therapy and complex antituberculosis therapies are not considered cost-effective in an era in which money is worshipped so ardently that it is difficult to attack market logic without being called misguided or irresponsible."36

In other words, the revolution that occurred in physics over a century ago is at last happening in medicine and, to some extent, public health. But there was no social revolution to accompany the scientific one. As a result, we now live in a world in which several different standards of care may be advocated for the same disease. For those with chronic infectious diseases, including tuberculosis and AIDS, these standards include excellent treatment for some; ineffective treatment for others; and no treatment for most. Ironically, perhaps, the fact that hundreds of millions live without any access to effective therapy at all serves to justify the setting of double standards as an improvement over current conditions. The use of scientific language and "evidence-based approaches" to public health cannot mask the fact that managing inequality has been our approach to great plagues of our times.

 

-> Diskussion


1 Taking a sociology-of-science approach to this problem offers a unique opportunity to examine the ideologies driving knowledge production and dispersal. As many philosophers have convincingly argued, knowledge, including scientific knowledge, cannot be created in an ideological void. The perspectives of people involved in all facets of knowledge production - from research to funding to policy - influence what becomes a part of accepted scholarly knowledge. For more on recent studies of the link between scientific knowledge production and ideology, see the edited volumes by Volker Meja and Nico Stehr: V. Meja and N. Stehr, The Sociology of Knowledge, Cheltenham, UK: Edward Elgar Publishing, 1999; V. Meja and N. Stehr, Knowledge and Politics: The Sociology of Knowledge Dispute, London: Routledge, 1990.

2 I use this term following Berger and Luckmann, 1966.

3 For a short review of Virchow’s extensive contributions to the field of social medicine, see L. Eisenberg, "Rudolf Luwig Karl Virchow, where are you now that we need you?", in: American Journal of Medicine 1984, 77, pp. 524-32.

4 P.E. Farmer, Infections and Inequalities: The Modern Plagues, Berkeley: University of California Press, 1999.

5 See the work of Sidney Mintz (foreword to J. Leyburn, The Haitian People, New Haven: Yale University Press, 1966; Caribbean Transformations, Baltimore: Johns Hopkins University Press, 1974), Bastien (Le Payson Haitian et sa Famille: Vallée de Marbial, Paris: Éditions Karthala, 1985 [1951] ), Smith (When the Hands Are Many, Ithaca: Cornell University Press, 2001), and Trouillot (Haiti, State Against Nation: The Origins and Legacy of Duvalierism, New York: Monthly Review Press, 1990) for histories of the declining fortunes of the rural poor in Haiti.

6 This dam, through accidents of political economy and history, was signed into existence in Washington D.C. Haiti and the United States are the two oldest republics in the Western hemisphere. It follows that they have the longest history of interaction of any two republics in the region, a fact which most Haitians know while almost no Americans do. It is therefore not surprising to many Haitians that this dam would have been created and signed into existence in Washington, and built to a large part by an American engineering firm.

7 The World Bank, The World Bank’s Commitment to Tuberculosis Control, in: Tuberculosis Issue Brief, March 2001. Available at the following URL: http://www.worldbank.org/html/extdr/pb/tbpb.htm, accessed July 17, 2001.

8 The impact of the dam on the lives of those living in the valley is recounted in P.E. Farmer, AIDS and Accusation: Haiti and the Geography of Blame, 1992.

9 Robert Koch discovered the tubercle bacillus in 1882. "One has been accustomed until now to regard tuberculosis as the outcome of social misery," Koch wrote, "and to hope by relief of distress to diminish the disease. But in the future struggle against this dreadful plague of the human race one will no longer have to contend with an indefinite something, but with an actual parasite." (cited in: G.D. Feldberg, Disease and Class: Tuberculosis and the Shaping of Modern North American Society, New Brunswick, N.J.: Rutgers University Press, 1995, p. 439).

10 Associated Press, "Experimental drug gives researchers optimism for new treatment for TB", in: St. Louis Post-Dispatch, June 22, 2000, p. A9.

11 Between 1975 and 1996, 1,233 new chemical entities were registered. Of that number, only eleven were for tropical diseases such as tuberculosis and malaria. For more on this, see: S. Pfeifer, "Public-private partnership attacks tuberculosis - aim is to spur development of new drugs", in: Knight Ridder/Chicago Tribune, October 20, 2000.

12 Tuberculosis funding by the National Institutes of Health - at the forefront of research efforts in the United States and, with a total budget in excess of $23 billion, the major funder of domestic medical research - reached only $87 million this year, despite the fact that the disease is the second-leading infectious cause of adult death in the world. This $87 million is nonetheless a marked increase from the $3 million allocated to TB-related research in 1989. Since 1999, funding for TB research has increased, although it is still far from adequate considering the disease burden. Much of this increased funding has been driven by the Bill and Melinda Gates foundation, which has invested over $200 million in TB and malaria research since its inception. For more details, see A. Shadid, "Biotechnology; fighting scourges with funds once almost ignored, malaria, TB research see flood of cash", in: The Boston Globe, May 30, 2001, p. C4.

13 Centers for Disease Control and Prevention, Reported Tuberculosis in the United States, 1999, August 2000. The national rate stands at 41.6 percent for 1998, an increase of more than ten percent since 1993, with six states reporting greater than seventy percent of foreign-born cases (E.A. Talbot, M. Moore, E. McCray, et al., "Tuberculosis among foreign-born persons in the United States, 1993-1998", in: JAMA 2000, 284 (22), pp. 2894-2900).

14 World Health Organization, TB Treatment Observer, 1997.

15 Prevalence of TB is estimated at about 300 per 100,000 population for the district (P.E. Farmer, J. Bayona, M. Becerra, et al., "The dilemma of MDRTB in the global era", in: Int J Tuberc Lung Dis 1998, 2 (11), pp. 869-876). In the hardest hit regions of Africa, estimates fall between approximately 300 and 550 cases per 100,000 population (World Health Organization, WHO Report 2001: Global Tuberculosis Control, Geneva: WHO, 2001).

16 M.C. Becerra, J. Freeman, J. Bayona, et al., "Using treatment failure under effective directly observed short-course chemotherapy programs to identify patients with multidrug-resistant tuberculosis", in: Int J Tuberc Lung Dis 2000, 4 (2), pp. 108-114.

17 P.E. Farmer and J.Y. Kim, "Resurgent TB in Russia: Do we know enough to act?", in: European Journal of Public Health 2000, 19 (1), pp. 132-136.

18 M.C. Becerra, Epidemiology of tuberculosis in the northern shantytowns of Lima, Peru. Sc.D. thesis, Boston, MA, Harvard University, April 1999.

19 P.E. Farmer, J. Bayona, M.C. Becerra, et al., "The dilemma of MDRTB in the global era", in: Int J Tuberc Lung Dis 1998, 2 (11), pp. 869-876.

20 World Health Organization, Report on the Tuberculosis Epidemic, 1995. Available at the following URL: http://www.who.int/gtb/publications/tbrep_95/stop-tb.htm, accessed July 31, 2001.

21 "Legitimation as a process is best described as a ‘second-order’ objectification of meaning. Legitimation produces new meaning that serve to integrate the meanings already attached to disparate institutional processes. The function of legitimation is to make objectively available and subjectively plausible the ‘first-order’ objectifications that have been institutionalized" (Berger and Luckmann, 1966, p. 110).

22 Centers for Disease Control and Prevention, "Primary multidrug-resistant tuberculosis - Ivanovo Oblast, Russia, 1999", in: MMWR 1999, 48 (30), pp. 661-663.

23 Using first world diagnostics and third world therapeutics is unfortunately not uncommon in medical research, and also not limited to MDRTB studies. Research universities and development agencies now have global reach, and, just as epidemics are transnational, so too, increasingly, is research. But although the pathogens readily cross borders, the fruits of research are often delayed in customs. For example, it will not go unnoticed that it proved easy enough to use first-world diagnostics - in the contentious HIV study conducted in Uganda by Quinn and colleagues in 2000, for example, sophisticated assays of viral load were available - even though antiretroviral therapy was deemed unfeasible, too difficult, or "cost-ineffective". In defending their decision not to treat HIV-infected study participants, Quinn and colleagues write: "Most importantly, neither we nor the Ugandan government had, or currently have, the clinical capacity to manage antiretroviral treatment, including side effects and compliance" (T.C. Gray, M.J. Quinn, N. Serwadda, et al., "Viral load and heterosexual transmission of human immunodeficiency virus type 1", in: New England Journal of Medicine 2000, 342 (13), p. 361). It is in fact this attitude that I, and many of those who wrote letters voicing their objections to the study, argue is wrong. Critiquing the oft-used argument that weak infrastructure makes treating the sick an impossibility in poor countries, Nguyen retorts, "Using the ‘weak-infrastructure’ excuse to not do anything is equivalent to refusing to offer someone CPR because cutbacks have closed the local intensive-care unit" (V.K. Nguyen, "The shape of things to come?", in: The Globe and Mail, July 11, 2000, p. A15).

24 P.E. Farmer, "Managerial successes, clinical failures", in: Int J Tuberc Lung Dis 1999, 3 (5), pp. 365-367.

25 World Health Organization, TB Treatment Observer, 1997, p. 2.

26 World Health Organization, TB Treatment Observer, 1997, p. 2.

27 M.A. Espinal, S.J. Kim, P.G. Suarez, et al., "Standard short-course chemotherapy for drug resistant tuberculosis: Treatment outcomes in six countries, in: J Am Med Assoc 2000, 283 (19), pp. 2537-2545.

28 World Health Organization,. TB/HIV: A Clinical Manual, Geneva: World Health Organization, 1996, p. 89.

29 For more on our treatment results, see: P.E. Farmer, J.Y. Kim, C.D. Mitnick, and R. Timperi, "Responding to outbreaks of multidrug-resistant tuberculosis: Introducing DOTS-plus", in: L.B. Reichman and E.S. Hershfield (eds.), Tuberculosis: A Comprehensive International Approach (second edition), New York: Marcel Dekker Inc., 1999, pp. 447-469. WHO aims for a eighty-five percent cure rate with DOTS (World Health Organization, WHO Report 2001: Global Tuberculosis Control, Geneva: WHO, 2001).

30 P.E. Farmer, J.K. Kim, C.D. Mitnick, and R. Timperi, "Responding to outbreaks of multidrug-resistant tuberculosis: introducing DOTS-plus", in: L.B. Reichman and E.S. Hershfield (eds.), Tuberculosis: A Comprehensive International Approach (second edition), New York: Marcel Dekker Inc., 1999, pp. 447-469.

31 R. Gupta, J.Y. Kim, M.A. Espinal, et al., "Responding to market failures in tuberculosis control", in: Science forthcoming 2001.

32 For a summary of New York’s TB outbreak, see Laurie Garrett’s The Coming Plague. (New York: Farrar, Straus, and Giroux, 1994). See also: T. Frieden, E. Fujiwara, R. Washko, et al., "Tuberculosis in New York City: turning the tide", in: New England Journal of Medicine 1995, 333 (4), pp. 229-233. For a critical commentary on the relative contribution of DOTS, see P.E. Farmer and E. Nardell, "Nihilism and pragmatism in tuberculosis control", in: American Journal of Public Health 1998, 88 (7), pp. 4-5; and R. Bayer, C. Stayton, M. Desvarieux, et al., "Directly observed therapy and treatment completion for tuberculosis in the United States: Is universal supervised therapy necessary?" in: American Journal of Public Health 1998, 88 (7), pp. 1052-1058.

33 R. Gupta, J.Y. Kim, M.A. Espinal, et al., "Responding to market failures in tuberculosis control", in: Science forthcoming 2001.

34 P.E. Farmer, A.S. Kononets, S.E. Borisov, A. Goldfarb, T. Healing, and M. McKee, "Recrudescent tuberculosis in the Russian Federation. A Program in Infectious Disease and Social Change", in: The Global Impact of Drug-Resistant Tuberculosis, Boston: Harvard Medical School and Open Society Institute, 1999.

35 L. Thomas, The Youngest Science: Notes of a Medicine Watcher, New York: The Viking Press, 1983.

36P.E. Farmer, "The major infectious diseases in the world: to treat or not to treat?", in: New England Journal of Medicine 2001, 345 (3), pp. 208-210.