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.
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.
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.
Happy to discover your blog! Regarding the mobility of files, my experience in gov’t TB clinics suggests that there are two different sets of files: 1.) a notebook or folder for the patient, filled with x-rays, lab results, prescriptions and recommendations for further tests, and 2.) a standardized chart maintained at the drug dispensary, which notes whether a patient has shown up to take their anti-tuberculosis treatment at the prescribed times. More generally, UID in relation to India’s RNTCP (Revised National TB Control Programme) works in part upon the assumption that the failure of TB is a failure of adherence and a failure of localization. The uncertainty of the TB diagnosis itself (whether TB or not, whether MDR, TDR, XDR, or not) suggests that the information being coded, like degrading fingerprints, might itself have inherent limits.
Appreciate this, especially your point about the distinction between the patient “notebook” and the standardized chart in the possession f the drug dispensary. I am wondering if the dispensary has been the primary site of standardized patient surveillance for a long time, given your careful history of TB in Chennai, or a more recent emergence.
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