Wednesday, December 12, 2012

Anthropology's Role in Addressing the Failures of TB Management

Anthropology's Role in Addressing the Failures of TB Management

As 2011 drew to a close, the media began to whisper of the new possibility of completely untreatable Tuberculosis in India. The gravity and reality of this circumstance were confirmed in June 2012 when prominent Indian chest specialist Dr. Zarir Udwadia published a sharply critical article in the Journal of Asian Pacific Society of Respirology stating:  “we have managed by a combination of complacency and incompetence to allow this bacillus to mutate into a virtually untreatable form” (Denyer). This had the dual impact of saying that not only is Totally Drug Resistant Tuberculosis (TDR-TB) now a real threat to everyone in the world, but the development of TDR-TB was also totally avoidable (Udwadia).  In order to move forward with TB management, it is important to understand its history. In this, it is possible to see a role for an anthropological perspective in the future.
Udwadia’s article condemning the sweepingly inept TB treatment pipeline in developing countries like India is starkly reminiscent of Dr. Paul Farmer’s article from 15 years ago, “Social Scientists and the New Tuberculosis”, published in Social Science and Medicine in 1997 (Farmer). In it, Farmer addresses the emergence of MDR-TB in Haiti and considers the failures in health delivery that must have happened in order for this to occur. Most importantly, Farmer also criticizes the work that had been put forth by Medical Anthropologists and social scientists in general which fell into several pitfalls and neglected to contribute constructively to TB treatment in any way. In many ways, Farmer identifies the same problems in management as Udwadia does, and so his arguments continue to be relevant. This evident lack of progress is unfortunate, but perhaps the emergence of TDR-TB will at least rejuvenate anthropological efforts and global attention in the struggle to manage what was in the fifty’s described as a disease destined for imminent total eradication (Farmer).   
First and foremost in Farmer’s point is that Tuberculosis has flourished despite the presence of a 95% effective cure developed 60 years ago because of social phenomena, primary economic hegemony and structural violence. At the time in 1997, and still today, TB treatment efforts face a large amount of what is called “non-compliance”. Non-compliance is the patient’s failure to follow the treatment plan prescribed by health care professionals.  The term, however, implies a sort of lack of willingness to take the drugs or follow the regimens when in reality a vast majority of those afflicted with reactive TB do not have the ability to comply with the WHO’s recommendations. A single treatment course for MDR-TB costs at least $5,000, which doesn’t cover the cost of hospital stay and does not extend to full treatment (WHO). Full treatment of MDR-TB takes years, and requires constant medication, very good diet, and likely months of hospitalization.
Considering this, it is Paul Farmer’s message that treatment for MDR-TB is damn near unattainable for any one who doesn’t have a couple years of vacation time and tens of thousands of dollars saved up. Regular, sensitive TB is not much easier to get treatment for. And whom does TB of any kind most commonly infect? The chief sufferers of TB are not wealthy individuals who can mount the hurdles required to get treatment, they are marginalized poor people who often do not have electricity or clinics within miles of their towns. The very people who are least likely to be able to follow treatment are the ones who are most likely to have TB. These people are naturalizing a history of social violence and their struggles and disadvantages fit into a large and mosaic picture of capital hegemony.  In addition to the larger social environment at work is the complication of HIV. HIV increases the chance of getting reactive TB and greatly decreases the chance of survival with TB. For MDR-TB, a patient co-infected with that and HIV will be dead in weeks. This synergistic disaster further exacerbates the health disparities between poor and wealthy.
The reason Farmer emphasizes this extreme economic and social disadvantages to the TB suffering population of almost every country is because he felt that social analysts of the time completely neglected this explanation. Anthropologists and other social scientists have always struggled to find a foothold in the biomedicine-dominated arena of Global Health. In their effort to solve the problem of mass non-compliance with their social insights, Farmer argues that they actually just reinforced the one-sided biomedical explanation. This circular ordeal did nothing to help get more drugs to more people. The issue with TB is governance. The political, economic, and social forces in control of TB treatment have not effectively handled the rare and paramount drug resources handed to them. Yet in the biomedical field, noncompliance was often ascribed to the idea patients had no education on the disease and were shirking treatment out of laziness and ignorance. Social scientists, like the disgruntled doctors writing off patients who didn’t return for checkups, also assumed the problem lay in the individuals.
In order to do good work, anthropologists now facing the indomitable presence of TDR-TB should review the pitfalls of the field, highlighted in Farmer’s frustrated and clairvoyant article. All of these pitfalls have to do with (unconsciously) engaging in the politics of othering, or dividing people through negative representations (Durkheim). The first is conflating structural violence with cultural difference: no one has TB by choice because of some cultural quirk. No one shirks treatment because its not part of their culture. Anthropologists have historically emphasized culture as the turf of their field, but this can limit their perception. Seeking cultural differences to explain the differences in health between poor and wealthy people ignores the larger societal structures that limit behavior. In his fitting example, Farmer brings up one study that argues for a cultural explanation of pediatric TB diagnostic delay in a Philippines city. The only way to catch TB earlier and treat it more effectively would be to change the entire culture of these Philippinos. Yet, a few miles away, another study reported dramatic increases in attendance and treatment when they simply made drugs readily available. Those same cultural differences didn’t seem to get in the way of treatment in this study somehow. It is therefore crucially important to look at the whole picture and not just cultural differences.
Next, Farmer warns against minimizing the role of poverty in social analyses of global health problems. Many studies put forth by anthropologists found various reasons why many people don’t show up for TB treatment, but few acknowledged the fact that all of the suffering people were poor. This huge oversight denies the crucially important social analyses identifying what economic changes can be expected to affect in terms of health. Maybe if social scientists pulled their heads out of the sand when Farmer wrote his article, the crushing impact of IMF programs on tuberculosis rates and mortality determined in 2008 could have been predicted. IMF lending programs, which are sort of economic makeovers for governments, increased tuberculosis incidence, prevalence, and mortality rates by 13.9%, 13.2%, and 16.6%, respectively in a study of 21 post-communist countries over 20 years (Stuckler). This type of problem is exactly what social science is supposed to control for in global health. Biomedicine doesn’t cover that type of big picture interaction. 
Exaggeration of patient agency is the next common pitfall Farmer beckons social scientists away from. As he says, “the poor have no options but to be at risk for TB, and are thus from the outset victims of ‘structural violence’” (Farmer). If it were up to patient agency and compliance, would one third of the world’s population really still be infected (WHO)? So over two billion people choose to live with TB because they’re ignorant don’t want to take pills. The biomedical emphasis on individualism and the idea that everyone can be perfect if they just try hard enough is a very Western notion that is unrealistic. As Sarah Horton, now director of the same department from which Paul Farmer wrote this article, argues: “individuals whose conduct is deemed contrary to the pursuit of a ‘risk free’ existence are likely to be seen, and to see themselves, as lacking self-control, and as therefore not fulfilling their duties as autonomous, responsible citizens” (Horton). As social scientists should know, individuals are part of bigger environments that affect them in many ways. Over-emphasizing patient autonomy discredits the intelligence and ability to adapt of the patient population, and neglects the need for structural change.
The next two dangerous habits of social scientists are related: romanticism about 'folk healing", and persistence of insularity. Social scientists tend to see the presence of folk healing practices and idealize them as natural and true. While it is very important to consider every treatment option and also to consider patient ideas of healing, in the end it should come down to what works. The only treatment yet proven to be effective in any case at tackling pulmonary TB is biomedical. As anthropologists approach TB problems currently, they should do well to focus on the most effective treatments, as those will have the greater impact. On a related thread, Farmer also mentions the reluctance of social scientists to incorporate biomedical knowledge into their base. Insularity like this, in any field, is counterproductive. No issue facing human health is only explicable by one field of knowledge. Anthropology and biomedicine need to work together. The future role of social science in global health is to holistically analyze the complex social aspects of human life that impact health.
 To Dr. Udwadia, and many chest or TB specialists struggling with the steady increase of MDR-TB, the WHO has been both an ally and a frustration. While WHO funds and directs much of the TB research efforts, this power may not be directed in the optimal way. For instance, Udwadia, the first to identify TDR-TB in his hospital in Mumbai, was concerned when the WHO rejected the name TDR-TB in favor of continuing to call it MDR-TB. While it is true that TDR-TB patients have a couple of fifth-line treatments available to them and a handful of drugs are in the pipeline for general use in the next few years, the fact remains that for these patients will die. While treatments exist, they still will not make it to the impoverished people who are suffering from TDR-TB. In effect, TDR-TB is an apt description. The WHO sees only the biomedical tools that are known but does not consider what that means practically. Sure, all patients with TB should be tested for resistance and the care providers should be under UV light during all patient contact and there are last-chance treatment courses, but the expenses for this are ungodly and out of question. All of that technology existing changes nothing in the field. Again, many TB endemic regions don’t even have electricity let alone laboratories. Udwadia’s frustrations highlight the area of TB efforts that the WHO fails in and that anthropologists are wonderfully suited for.
After the development of effective antimicrobial TB treatments in the fifty’s, people severely underestimated the battle that would ensue. As a result of human biopower loosely directed and unequally distributed, we were eventually landed with a shameful defeat with the emergence of MDR-TB in the nineties. In the rematch, with the global health powers newly sworn to do right by TB, we suffered yet another defeat. TDR-TB has sprung up (and this was after a two year effort to really get control of TB in India) and now we are sent back to the drawing board. What is missing? There is a biomedical solution to TB (twelve mainline drugs, in fact), but the social end is lagging. This is where medical anthropologists can come in. If we avoid the pitfalls Paul Farmer highlighted in the midst of the rise of MDR-TB, and look at the larger structure of inequality and poverty, it may be possible to move forward with realistic and effective TB treatment distribution.

By Molly Reid



Works Cited
Denyer, S. (2012, September 5). India steps up TB fight as fears of drug-resistant
             strains mount. Retrieved December 11, 2012, from Washington Post
website: http://articles.washingtonpost.com/2012-0905/world/354 95502_1_drug-resistant-zarir-udwadia-tb
Durkheim, E., & Traugott, M. (1978). Emile Durkheim on institutional analysis.
Chicago: University of Chicago Press.
Horton, Sarah. (December 01, 2004). Different Subjects: The Health Care
System's Participation in the Differential Construction of the Cultural
Citizenship of Cuban Refugees and Mexican Immigrants. Medical
Anthropology Quarterly, 18, 4, 472-489.
Farmer, P. (February 01, 1997). Social scientists and the new tuberculosis. Social
Science & Medicine, 44, 3.)
Stuckler D, King LP, Basu S (2008) International Monetary Fund Programs and
Tuberculosis Outcomes in Post-Communist Countries. PLoS Med 5(7): e143.
 doi:10.1371/journal.pmed.0050143
Tuberculosis. (2012, October). Retrieved December 11, 2012, from WHO website: 
            http://www.who.int/mediacentre/factsheets/fs104/en/index.html 
Udwadia, Z. F. (2012), Totally drug-resistant tuberculosis in India: Who let the djinn
out?. Respirology, 17: 741–742. doi: 10.1111/j.1440-1843.2012.02192.x

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