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.)
(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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