In Dream Valley, the poor have many homes: duplication and tuberculosis in real time

A brief comment today riffing off of a set of lectures and seminars given by sociologist and anthropologist Veena Das at Berkeley a few weeks ago. Das and many colleagues have long worked in several slum areas in Greater Noida, an extensive area of urban development including large tracts of slum housing far to the southeast of the older urban core of Delhi.

A different kind of Greater Noida address

This work has long troubled the sufficiency of figures of “the poor” and “the slum” and their presumptive “everyday” reality, through long-term weekly and monthly inquiry by a team trained by Das into well-being and illness, income and expenditure, relations to politicians, brokers, bureaucrats, healers, and much more. Through “amplificatory techniques,” these weekly and monthly engagements have produced a dense and complex record challenging the adequacy of much urban slum ethnography that all too moves quickly from (1) single case studies, in or across widely separated moments in time, to (2) generalized accounts of “the poor,” of conditions and of processes in the slum. What Das has argued is needed is a very different form of research.

One of my concerns in this emerging project has been “duplication-from-below.” UID/Aadhaar is premised on ending “leakage,” regularizing and rationalizing state (and increasingly privatized) development and basic entitlements enabling life with an (allegedly) incorruptible ID card that uses biometrics and big data to eradicate all “duplicates” — that is, to end cheating with duplicate IDs. Duplication-from-above is the diversion of entitlements by a powerful “nexus” (usually named as politicians, parties, land mafia) that creates a phantom population in order to siphon benefits on a massive scale. Its opposite in formal terms is a duplication-from-below by which less empowered people get by with multiple (“duplicate”) ration cards, false (“duplicate”) addresses, and so forth.

De-duplication, the new order of information promised under Aadhaar/UID, is of course premised on ending both. If the new order threatens livability by depriving more marginal persons of the tactical resources of duplication, the benefit will be the legitimate flow of currently throttled entitlements and greater wealth and health for all. Or so the promise of the card is framed.

One could look at life in the areas studied by Das, her colleagues, and their research team as intensely “duplicated-from-below.” But the rigor of the amplificatory method they employ has allowed them to place what I term duplication in real time, as it were.

Let me give an example of duplication, from a paper by Das, and how it might conventionally be read. Then let me apply the discussion she offered during her Berkeley visit to rethink the problem of the duplicate in time.

Hospitalization through duplication

The example comes from an essay entitled “TB and Urban Poverty: An Essay Critical and Clinical” that can be found on the web. It centers on Meena, “a resident of a cluster of jhuggis (shanties) in the industrial area of Noida.” The cluster or slums is specific in several ways: (1) Waves of settlement: “The residents of the jhuggi settlement in our sample had arrived in waves – the earliest settlement can be traced to forty five years ago. Subsequent movements have followed networks of kinship and village affiliations.” (2) Complexity of the multiple norms structuring informal rights in land: “The settlement is an unrecognized colony which means that the residents do not have a legal right to the land but complicated customary norms have evolved here as in many other slums of this kind, so that people have ‘bought’ land and built jhuggis on this land.” I will return to this complexity as a particular condition of duplication: given the lack of a formal norm of occupation of land, provisional and contested norms proliferate. (3) Eviction stay, election cycles, and perennial hopes of formalization of rights in land: “The residents have also registered themselves as a scheduled caste association … [which] has enabled them to obtain a stay order … [forbidding] the government to take over their land unless alternate housing is provided to them. The government policy on this issue has vacillated over time but with each election, as residents are courted by candidates, they become hopeful of getting rights to pakka (i.e. built with bricks and cement) housing in a ‘recognized’ colony.”

Some initial context is offered on Meena: (1) Household: she lived “with her husband, two young sons and the husband’s father.” (2) Family tensions: “Her two sisters were married to the two brothers of her husband but relations between them were fraught with conflict.” (3) Employment and income:  “Meena’s husband and his father were both employed by a contractor in the U.P Water supply department as cleaners. Thus they had a stable but meager income throughout the period of our study which meant that small amounts of cash were available to the family, though this cash was never adequate for the many demands ranging from food, providing school supplies for the children, as well as money spent on alcohol and tobacco by Meena’s husband.” (4) Clinical expenditure: “there were regular expenditures incurred on medications, especially as the younger son suffered from a respiratory ailment.”

The fieldworkers’ account of Meena’s TB shifts. Initially in 2000, “Meena had reported that her first episode of TB occurred three to four years ago. At that time she said that she took medications for a long time – perhaps seven months, perhaps one year.” But later “she said to one of the fieldworkers that she had TB for the last eight years which had ‘never been cured.’ She described a complicated story in which first, she talked about a breast abscess after her child’s birth, a minor surgery as well as fever, cough and weakness.” The earlier period of TB occurred when she was still in the village. Meena took medication until she became asymptomatic or even remaining weak given the lack of money. After she went to a local BAMS [Ayurvedic Medicine] practitioner who gave her antibiotics, analgesics, and other medicines. Her need to get well was intensified by the fear that her husband was seeing another woman.

Their relation worsened, as did Meena’s health: her husband did not have enough money to get her admitted to a local private hospital but her cousin got her admitted to a government hospital at some distance “under another name in that hospital on the pretext that she was his dependent relative.” She stayed there 6 months. The research team could not find her for some time as her name had been changed: one of her sons also worried that his mother had died. When she returned home, “the hospital discharged her with instructions to complete the course of medications. She was required to go the hospital OPD to receive medication but her husband managed to get her name transferred to another DOTS center nearer their home.”

Meena’s health improved for two years. Her symptoms then worsened and the researchers took her to a clinic they knew at some distance again from the slum: the doctor there confided that he did not see much therapeutic benefit given likely MDR-TB [multi-drug resistant TB]. Again the distance was hard for Meena’s husband, he “did not want her to be admitted to a hospital so far away from home so they went to another DOTS center by providing a false address. Here again she was dispensed the anti TB regimen under the DOTS protocol but reported serious side effects such as continuous nausea. Her condition continued to worsen, so she stopped taking medications. She died in a private nursing home in December 2003 where she was rushed in the last two days of her life. The family at the end of her life was in debt to the order of several thousand rupees.”

Das’ essay uses Meena’s story to challenge the dominant account of much of the public health and anthropological literature: that stigmakeeps people from returning to clinics and adhering to an adequate course of anti-TB treatment. Rather: “what seems to emerge from the story, instead, is consistent institutional neglect and incoherence. This neglect exists in conjunction with the care and neglect built into Meena’s domestic relations. In the course of three and a half years, Meena took three rounds of TB medication, all under the protocols of TB management in DOTS centers. There was no consistent record of her illness with any of the practitioners. When she was admitted to hospital, she took an assumed name and did not show her previous medical records but even when she used her own name there was no attempt on the part of the DOTS center to ascertain her medical history. In each episode of the disease she completed the course of medications, and was declared to be sputum negative and thus ‘cured.'”

Das suggests that the particular practice used by Meena’s husband to get her into a DOTS program or treatment center closer to home, what I am terming in relation to the language of UID as “duplication,” is also not enough to explain why clinics never treated her in relation to her previous medical history.

Still, a pattern emerges: care from the wage-earning husband is inconstant and Meena depends both on him but on others (her relations, social welfare agencies [here the research team] who use their own connections to get her seen far from home. At some point when her husband becomes involved in her care he moves her back closer to home. These moves may involve a “duplicate” name or address change. Whether or not the care network resorts to duplication, the clinic seldom attends to Meena’s past history of TB in prescribing.

Duplication as access to care?

Duplication-from-below emerges here as a resource–for the relative who moves Meena to a government hospital and for her husband who on two occasions moves her care closer to home.

But Das and colleagues show that whether or not the care network “duplicates” Meena’s identity to get her admitted, her de-duplicated medical file is not utilized.

The context, in which the Government of India’s failure to organize effective DOTS treatment for drug resistant TB has led to calls for UID to be used to deterritorialize TB care and create incentives and demands for de-duplicated patient identity, is critical: in theory, allowing for the mobility of the patient file through UID/Aadhaar could lead to Meena’s information following her clinical trajectory. But the very structures of diagnosis and assessment have produced a body of knowledge which asserts that practitioners, most with substandard or nonexistent training, do not need such long-term mobile knowledge to treat people like Meena.

UID promises de-duplication, deterritorialization, and thus better care. The shifting availability of care from husband/husband’s family and her own family/outsider welfare have demanded that various persons in Meena’s world duplicate her in order to deterritorialize her care. And at some level, heretofore Meena’s duplication or de-duplication does not seem to change the quality of care as the clinic, despite the prevalence of MDR-TB, continues to treat each episode as a singularity.

Will a new demand for Aadhaar that makes duplication-from-below more challenging change the situation in terms of clinical norms of treatment?  The sense one gets from this paper is pessimistic.

The accusation of address

Finally, Das at her Berkeley talks made a point that echoed one with which I began discussing this paper. The complex conditions under which slum residents may make some kind of normative claims on state or corporate or NGO programs lead to the multiplication of addresses. Programs often mandate audits of the informal slum and may find previous systems of house-numbering to be inadequate or untrustworthy.  Numbering systems proliferate. Das described a given slum area that had some 4 or 5 parallel numbering systems each created by a specific agency of slum governance or welfare.

Subject to accusation and continual re-territorialization

At stake in the duplication, that is, may be an intensification of the accusation of untrustworthiness. Slum-dwellers are accused of cheating, of duplication, and are assigned new numbers, a presumptive de-duplication. But each effort to de-duplicate only intensifies the condition of duplication and the accusation.

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“The Mumbai Episode”: Big Data in the Wake of the Total Failure of Tuberculosis Treatment

This post continues the previous one’s focus on the just announced registering of all TB patients nationally through the UID/Aadhaar program, as a disease control measure for a national population increasingly conceived of as migratory or “deterritorialized.” It is also a response to Peggy Trawick’s comment on that earlier post suggesting that programs like UID miss the point and that tackling TB must focus on the fundamental conditions of the physical milieus in which people live.

Drug-resistant TB patient in Mumbai (Deccan Chronicle photo)

It begins by engaging a similar article to the one discussed yesterday, from the Asian Age newspaper of 7 July 2012. It then develops a reference to the disastrous “Mumbai episode,” reading a recent article in the Lancet.

TB patients to get UID number

Starting July 15, patients suffering from tuberculosis will be given a unique identification number by the state government, to keep tab on the spread of the disease.  A specialised software will connect all facilities treating tuberculosis patients, to avoid duplication of cases. Already 60 data entry operators working in the government, have been trained to use the specialised software, where the data of each and every TB patient in the state will be uploaded. “After the Mumbai episode, we had proposed a common software across all states. The government of India has already designed a common software for all states, in which the data of each TB patient will be uploaded,” said Dr Pradeep Gaikwad, joint director, tuberculosis and leprosy…

According to state health officials, the software will help the state trace the patient, even if he migrates to other states or other parts of the state. Having common data will also help avoid duplication of cases. “The major reason for the rise in resistant tuberculosis is because of defaulter patients, who stop their treatment mid-way. If a patient goes to another state, he/she can give his unique identification number to the doctor; this will help the doctor understand his/her case history and give the required medication to him/her,” Mr Gaikwad added. The patient’s contact number, Aadhar card number and other medical details will also be uploaded in the software, so that doctors can trace him/her, even if he/she stops coming to the hospital. Mr Gaikwad, however, warned that owing to the active case finding intervention, the number of tuberculosis cases in the state could rise.

According to the state health department records, of 1.35 lakh tuberculosis patients, 25 per cent fall under the multi-drug-resistant tuberculosis [MDR-TB] category.

This article offers a clearer rationale for the new program than the earlier article: centrally at stake is the tracing of TB patients to ensure that they complete the course of their medication. UID/Aadhaar becomes an extension of DOT, Directly Observed Therapy, a massive up-scaling of a surveillance intervention focused on local knowledge and intimate observation to ensure drug regime adherence. This tracing includes not only migration but also non-compliance in place, as it were.

Of note is the relation of the Aadhaar/UID number to residence information, a much debated feature of its data set. Like the banking and finance industries, the public health establishment requires location-specific data of Aadhaar. But one of the promises of UID early on was its deterritorialization, that is, its naming and characterizing an individual not through his or her native place or father’s village or town but through mobile biometrics. Implicit in the deterritorialization was an understanding of corruption (say, the cut a local official may exact of someone’s pension) that presumes that mobile identity allows individuals to evade this intimate and localized corruption.

With TB, as with finance, trust however depends on the ability to locate the registrant. UID promises the doctor that she or he can find the UID subject using the data encoded and linked to his or her UID number.  This spatial legibility is tied both to data and to use. For those who want UID to include spatial data, actual residence is included and available to those agencies with access to UID information. But UID number use itself produces a trace of location, much as a credit card would. To the extent more and more “minimal entitlements” from ration cards to employment guarantees to more and more state/private/NGO outlays are linked to UID, life itself becomes impossible without one showing up on a database somewhere in India or through its consular extensions.
That the public health state can trust locational data is critical as it must respond to its own massive failure, here the somewhat vague reference to the “Mumbai episode.”

For now, I am assuming that this episode is the much reported finding, early in 2012, that several cases of entirely multi-drug resistant tuberculosis had been found in Mumbai. Here is the Lancet of 21 January 2012:

India reports cases of totally drug-resistant tuberculosis

Samuel Loewenberg

Mismanagement of tuberculosis in Mumbai has led to the emergence of India’s first known cases of a totally drug-resistant form of the disease, say doctors. Samuel Loewenberg reports.

Researchers in Mumbai have identified 12 patients with a virulent strain of tuberculosis that seems to be resistant to all known treatments. The cases of so-called totally drug-resistant tuberculosis (TDR-TB) have been detected in the city in the past 3 months. Worldwide, the only other episodes of TDR-TB reported were in Iran in 2009 and Italy in 2007.

What then follows is a social diagnosis: a miserable state system drives persons to mostly untrained clinicians whose prescription patterns drive increased drug resistance: the state fails entirely either to regulate the latter or to address the failures of the state system.

“Basically, it is a failure of public health, and that has to be accepted in this country”, said Zarir F Udwadia, who has been treating the patients at the P D Hinduja National Hospital and Medical Research Centre, and who, along with colleagues, described four of the cases in a letter published online in Clinical Infectious Diseases. “The public doctors and private doctors are equally to blame”, he said. The city’s health officials reject these charges. “State TB care and health care in Mumbai is excellent”, Anil Bandiwadekar, the Executive Health Officer of the Public Health Department of the Municipal Corporation of Greater Mumbai, the city’s governing body told The Lancet.
Government health officials attribute the problems with drug-resistant tuberculosis to the city’s unregulated private doctors who prescribe inappropriate drugs. Privately, some senior officials acknowledge that much of the public have a negative perception of government-run health facilities, due to long waiting periods, rude treatment, and the stigma associated with tuberculosis. The result is that many infected people avoid the government tuberculosis programme and seek relief from private doctors, only some of whom have medical training. The government says that it is considering regulating tuberculosis drugs, but it has not yet taken action.
Mumbai would seem to be a prime breeding ground for drug-resistant infections. The city, home to more than 12 million people, is beset by poverty, overcrowding, and harsh living conditions.
Udwadia says that although the DOTS (Directly Observed Therapy, Short Course) programme has generally been successful for people with normal tuberculosis who do access it, for those with drug-resistant tuberculosis, it causes more than 8 months of delay as people are forced to go through standard treatments before they are diagnosed. All the time, they are generating further resistance.
The article concludes again stressing the failure of administrative capacity and political will, given the cost of treating MDR-TB, and uses the language of caste to characterize the forms of triage.
Presently, there are only 171 people enrolled in the DOTS-plus programme that has been in effect in Mumbai since 2010 to treat drug-resistant tuberculosis, according to the office of Bandiwadekar. Tuberculosis was estimated to have accounted for at least 15% of the deaths in Mumbai in 2010. India has one of the world’s highest burdens of drug-resistant tuberculosis, (around 100 000 people), according to WHO. The failure of the government to provide treatment for all of these patients is due to the cost—about US$4000 per patient, a high cost for India, which spends only $45 per head on health care. Udwadia says that the government passes its actions off as “health policy real politik”, which in effect means it ignores most of the patients with drug-resistant tuberculosis. “They have become the untouchables of the Indian medical system”, he said.
In fact, health centres and hospitals could be a contributor to the growth in resistance, said Nerges Mistry, the director of the Foundation for Medical Research in Mumbai. There is “poor infection control at most of these settings”, said Mistry, and people with resistant tuberculosis could well be infecting patients with a regular tuberculosis infection. A 5-year study done by the Foundation with the Wellcome Trust found that most patients were resistant to two or three of the first-line drugs, and some to all four. The city could have as many as 3500 cases of multidrug-resistant tuberculosis (MDR-TB) each year, but lacks the laboratory infrastructure in the public system to identify and confirm the diagnosis, said Mistry.
Exposure to MDR-TB is intensified in the city’s giant slums, described here as “notorious.”
Meanwhile, the patients with TDR-TB are walking the streets. Udwadia says that isolation is not practical due to cost and lack of hospital beds. He notes that four of the patients come from Dharavi, a notorious Mumbai slum with a population of 2·5 million people.
So far, three of the TDR-TB patients have died, one of them after lung surgery. One of the patients has passed on her infection to her daughter. Udwadia is trying any treatment he thinks might work. This includes a double-dose isoniazid, the harsh antibiotic linezolid, the anti-leprosy drug clofazamine, the anti-psychotic drug thioridazine, and meropenem and clavunate, which reportedly had some effect on tuberculosis in mice. “We are clutching at straws here”, he admits.

In this context, how to make sense of the turn to Aadhaar, to the new promise of Big Data? What is not addressed is the state’s failure, assuming the arguably inflationary language of the Lancet piece is acccurate, to enroll most persons with MDR-TB or to regulate the conditions of common treatment. Rather, those few persons already in the MDR-TB treatment pipline are to be more effectively surveilled through the UID number.
Or is there a more sustained argument to be made for the utility of UID. given this double failure, of routine TB treatment and of the enrollment of most persons with MDR-TB in treatment?