Behavioral Failure and the Killer App: Reflections on Melancholy via AIDS Prophylaxis and the Indian Emergency

This post continues the last post’s brief speculation on the new figure of UID as a platform with “public health” as among its most effective “killer apps.”

Scary?

Several scholars have taken up this striking figure: here I want briefly to engage the critique of Usha Ramanathan in the journal Seminar. Her title, “The myth of the technology fix,” suggests the broad lines of the critique. Indeed it is hard not to be troubled by the promissary hype of UID boosters (suggesting a fruitful future engagement with the anthropology of technological hype and the varied arguments of Kaushik Sunderrajan, Mike Fortun, Nik Brown, and many others).

Ramanathan begins with a diagnosis of public melancholy, to paraphrase the political theorist Wendy Brown, amid the apparent failure of the future-oriented progressivism of the development planning state: “The depths to which public morality has sunk evokes desperation, which seeks answers somewhere other than where the problem now abides, viz. in the human person. Technology and the machine can in the land of desperate optimism, seem relatively uncorruptible.”

The line of argument is familiar, from M.K. Gandhi’s Hind Swaraj to the critique of Nehruvian planned development. But if Gandhi could hold out for an ethic of the human and non-human set against certain extremes of machine life, by now Ramanathan suggests the human seems to have been altogether forfeited as a site of work.

If this melancholic condition holds, in which no movement at the level of the human is conceivable, in the context of the figure of duplication that haunts the entire moment and apparatus of UID, it is a condition of behavioral melancholy.  That is, persons, at least “public persons,” simply cannot be counted on to act morally. If behavior fails, tout court, then one needs a proxy for behavior: the machine.

I am moved to suggest this figure of a proxy for behavior given work from a very different context: that of the anthropologist Ryan Whitacre examining the emerging therapeutics of PrEP, pre-exposure prophylaxis for HIV as developed by the Gilead pharmaceutical corporation. At a UCLA conference organized by Mark McGrath to debate the impact of PrEP to which Ryan and I were invited, a dominant argument for the value of antiretroviral medication taken to prevent infection was that “behavior [i.e., condom use] has failed.” In the face of the utter failure of behavior, Gilead’s drug Truvada was offered as a proxy for behavior. [It is worth pointing out that these arguments were not made by Gilead representatives, who were not present at this conference. It may be worth pointing out that some of the activists making these claims were part of a welfare industry increasingly dependent on drug company funding.]

When behavior fails

One of Ryan’s several points, in the face of strenuous claims by several AIDS professionals that PrEP was necessitated by the failure of behavior, was that drug use is of course a behavior.

The point is neither to dismiss the power or utility of Truvada or PrEP nor to fail to acknowledge the experience of the activists that has led some to what I am calling behavioral melancholy.   Still, as scholars we note that PrEP may lead to a lifetime of the pharmaceuticalization of sex for many.  Truvada, used both to prevent as well as to treat infection, leads to a life course in which people who identify with particular terrains of risk consume the same drug both before and after seroconversion, a crucial clinical achievement but also brilliant corporate strategy and a validation of anthropologist Joe Dumit’s concept of the contemporary pharmaceutical capitalization of surplus health.

I mention this aside, on PrEP, as Ramanathan’s point similarly seemed to trouble an implicit or explicit claim for UID/Aadhaar as a proxy for behavior.

Ramanathan turns to the same and widely cited document on UID and Public Health I cited in the last post, and to the figure of the killer app. What is killer about the conception of public health as the “app” driving UID registration, as proposed in the document, is its coercive force. The ability to have access to more and more basic entitlements will be linked to the UID number: life will be inconceivable without it. Ramanathan challenges the “myth of voluntariness,” given the sheer force of the UID as it reorganizes the condition of life itself.

But in at least one sense, the form of coercion at stake works precisely through its “voluntary” quality. One is reminded of Emma Tarlo’s powerful reframing of the coercive sterilizations of the Indian 1970s’ Emergency. Unlike the powerful account in Rohinton Mistry’s novel A Fine Balance, when two poor men are literally dragged by goons into vehicles taking them to a surgical camp for forced operations, Tarlo shows through painstaking archival work in a Delhi resettlement colony how access to state-mediated land, food, employment, and minimal clinical care depended upon having the right identification papers, papers that marked one’s household as having given over a sufficient number of its members for the family-planning operation.

The state form under UID is not the state form under the Emergency. Increasingly, as Ramanathan points out, the state works not through operations but money. She cites the economist Jean Drèze: “The real game plan for social policy … seems to be a massive transition to ‘conditional cash transfers’ … If the backroom boys have their way, India’s public services as we know them will soon be history, and every citizen will just have a smart card – food stamps, health insurance, school vouchers.” Life will be conceived of as dependent on a series of apps, each associated with targeted cash transfer. The state is the platform for these apps. Health entitlement is the killer app as serious illness is, after all, a killer.

To return to the Jim Ferguson article cited in my last post: it is not clear that the shift to cash transfers is a priori a bad thing, or that its effects will represent the winnowing of a vibrant social state. It is not clear that the work of Jean Drèze is as contemptuous of the backroom boys as this particular citation suggests: a topic for another day. Next time, unless I am otherwise distracted, more on the Ramanathan article.

The ultimate proxy for behavior?

Killer App: UID, Public Health Defaulters, and the Smartphone Theory of the State

Continuing on the theme of UID as public health tool, today I want to look briefly at a Working Paper on that topic available on the official UIDAI website. The paper makes a case for UID as enabling the expansion of varied welfare schemes using the metaphor of a smart phone.

Choose your metaphor, then…

I am particularly interested in the question of mobility, given the use of UID to address adherence failure due to mobility and migration.  And though I am cautious about overly relying on the logic of the metaphor, the conception of the state as a mobile smartphone is a productive one to work through.

Acknowledgements: I am grateful to Ian Harper and Bharat Venkat, both anthropologists and formidable scholars of TB treatment regimes, for comments they sent me on TB. Ian has critically studied and worked on DOTS [directly observed therapy] programs in Nepal and worldwide for many years; Bharat works in Chennai in a site critical for the formation of what would eventually become DOTS. And earlier comments and contributions by Jerome Whitington, Maria Ekstrand, Ashveer Singh, and Tulasi Srinivas addressed some of the issues at stake here.

The Excluded and the Defaulters: Ian points out: “the ‘migrant labourer’ and the issue of movement has been a particular problem with the DOTS programme from the start, and research in Delhi indicated that unless a patient could prove that they had a ‘permanent’ address, (even with staff visiting their address site to verify that they were there), then they could be denied treatment from the off through the public system… If started, then when they move, and given the lack of follow-up capacity in the government system, then they become categorised as ‘defaulters.’ High numbers of such ‘defaulters’ is one way through which programmes are evaluated by the WHO and described as poorly performing.”

Proof of permanent residency in the Delhi example Ian mentions becomes the basis for triage: a specific guarantee of territory, to continue the conceptual language of the preceding posts, is necessary for inclusion in the state’s pharmaceuticalization. If that guarantee may presume identification papers, it can extend as Ian suggests to a physical audit of their claims to proper residence. Improper or absent claims presumptively lead to abandonment. (These terms, developed by Joao Biehl, have generated intensive and productive debate). Types of claims on territory are used as proxies for knowledge of future patient mobility.

The flip side of the territorially excluded are the “defaulters” and here the audit at stake is not that of the state/corporate/multilateral organization/NGO apparatus of drug delivery auditing the prospective drug recipient but rather that of the multilateral organization (here WHO) assessing India and finding it wanting.

If the diagnosis offered in the Lancet cited in yesterday’s post framed the locus of failure at the nation state and its deficit of political will and regulatory capacity, here we see that the very privileged position of the European auditor (whether the medical journal of record or the WHO) is part of the feedback loop that leads the state TB administration to weed out the inadequately territorialized from the outset in order to improve its audits.

In such a context, UID makes a promise of transforming the reckoning of “adequate territorialization.” As will all such UID/Aadhaar promises, I want methodologically to avoid the hermeneutic of intense suspicion I and others are often drawn to produce. If I ended yesterday’s post with the suggestion that UID only addresses the minority of persons with MDR-TB [multi-drug resistant tuberculosis], one could argue that the point of the registration of the TB patient under UID will be to transform the ecology of multilateral audit and the logic of what I have called the feedback loop, leading to fewer disincentives against the exclusion of improperly territorialized persons diagnosed with MDR-TB (sorry for the quadruple negative in that last sentence, these blog posts are quick and dirty productions). In other words, if UID transforms the defaulter into an acceptably mobile drug recipient it might allow as well for the formerly abandoned to be included within the pharmaceuticalization regime.

Inclusion/abandonment: All this is speculation on my part at the level of the document or press report, at this point. But beyond TB, it points to tensions across the board in the imposition of UID that are framed in this binary of inclusion and abandonment: of elderly pensioners to be included in UID or whose fingerprints fail to register and whose motives are distrusted; of the Bangladeshi migrant who is to be more effectively surveyed as a Resident under UID or whose threat to the citizenship that differentiates Assam from the Bangladeshi prevents this inclusion and leads in due course to the entire state of Assam being temporally excluded from the UID program; and of transgender women whose community leaders have fought for inclusion under the census and other institutions of state identification but are divided and arguably deeply ambivalent about the value of inclusion under the surveillance of Aadhaar.

I am not satisfied with the conceptual payoff of this binary, but will let it stand for now.

Okay, why the smartphone?

I briefly cite the working paper I mentioned at the outset. It is symptomatic of all of the promise and confusion surrounding Aadhaar; as I pointed out much earlier on this blog, UIDAI officials seem as confused as anyone else about what UID is, does, and implicates. Here I break the document up into themes (ignore for now the many acronyms for particular state bureaucracies and entitlement schemes):

The unique and non-duplicated: “The Unique Identification (UID) project is a historic venture that seeks to provide a unique registration code to every Indian citizen. We surmise that the starting point would be to aggregate records from various population databases such as the census, the PDS system, voter identity systems, etc, while dealing with the challenge of duplication.”

The killer app as a figure of consumer/behavioral incentive: “Existing data bases would probably still leave a large percentage of the population uncovered. Therefore every citizen must have a strong incentive or a “killer application” to go and get herself a UID, which one could think of as a demand side pull. The demand pull for this needs to be created de novo or fostered on existing platforms by the respective ministries. Helping various ministries visualise key applications that leverage existing government entitlement schemes such as the NREGA and PDS will (1) get their buy-in into the project (2) help them roll out mechanisms that generate the demand pull and (3) can inform a flexible and future-proof design for the UID database. It will also build excitement and material support from the ministries for the UID project even as it gets off the ground.”

Public health will succeed if it can develop its own killer app: “Health, and health related development schemes could offer a killer application for the UID. After years of neglect, public health in India is seeing a revolution both in terms of (1) greater commitment towards government financing of public and primary healthcare (2) pressure to meet the MDG goals (3) consequent creation of large supply platforms at national levels such as the NRHM, RSBY and complementary state level initiatives such as the Rajiv Arogyasri insurance scheme in Andhra Pradesh. In health there is a cumulative historic gap both in terms of demand and supply. The UID could further help catalyse a revolution in India’s health outcomes.”

The participation of the new subject of UID (here termed a citizen by UIDAI, but as the official UIDAI website points out the subject of UID is a Resident and not a citizen: call this a constitutive confusion) is a matter of incentive, participation served by reforming governance as the promotion of self-interested participation in large-scale institutions, a broadly neoliberal figure for the condition of a scaled-up, arguably collective, social form. Jerome Whitington early on pointed me to Jim Ferguson’s very rewarding paper on this theme, “The Uses of Neoliberalism.”

Incentive is to be produced by each governmental agency. The new entitlement programs marking the last decade of Congress Party dominated rule, the extension of a prior development state electoral populism into a new form of state-corporate-NGO-multilateral governance, are here conceived of as killer apps for a generic platform, the UID.

Apps have become a powerful vehicle and metaphor. My Berkeley colleague Jim Holston is part of a collaboration thinking carefully about “social apps.”  Here I want to focus on the idea of a platform. What does it entail that UID is framed as a general platform for the “killer app”?

A real killer

–

“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?

De-duplicating migrant patients with tuberculosis: the dangers of “native place”

A set of articles recently sent me by friends have inspired the next several postings. This article was sent by Harris Solomon, from the DNA news website published today, 22 June.

Mycobacterium tuberculosis

UID numbers to record progress of TB patients

To keep track of the number of tuberculosis cases, a unique identification (UID) number was set to be issued to new TB patients from July 15, state health department sources revealed.

The scheme will be implemented across the country and will help doctors mete out the necessary treatment after referring to the digitised records to be available nationally. It will prove beneficial to migrant patients who often fail to avail the complete treatment after they move to their native places.

Dr Mini Khetarpal, TB officer, BMC, said, “This process will help us analyse the situation better. We will concentrate on prospective cases as per directions from the Centre, not old ones. Our officials underwent a day-long training in Pune about a month ago.”

She added that the digitisation program is currently being modified in Delhi after feedback from the World Health Organisation

The new system is specially designed to target migrant multi-drug resistant (MDR) TB patients and help doctors keep a tab on the treatment they have already received. It will also prevent duplication of UID numbers as their Aadhar card number will be mentioned as well.

The state has recorded 1,34,000 TB patients out of which 50% have contracted pulmonary TB for the first time. 25% cases are instances of recurrent TB while the remaining 25% have contracted extra pulmonary TB.

There is a lot here to think through, and as ever with this project one’s knowledge is limited and learning curve steep. For example, the article differentiates the “UID [universal identification database] number” from the “Aadhaar [identity card] number” (huh?) and argues that having both of these is necessarily to resist the threat that this blog has wrestled with from the beginning, that of duplication. So perhaps the next posting can clarify this doubling, assuming the article is correct, of the very number (Aadhaar/UID) whose uniqueness was to guarantee the promise of the de-duplicated nation. As with the earlier tussle between the Finance and Interior Ministries over who controls the national database, I want to suggest a familiar theme, that the Ur-database necessary to guarantee India’s de-duplicated, deterritorialized, de-corrupted promise is itself constantly being threatened with duplicates.

But let’s focus on three issues, as ever, for now.

(1) Biopolitics: at stake, first and foremost, appears to be a presumptively more effective means of health surveillance that can take account of the migrant status of persons taking medication for tuberculosis. TB patients will be registered for UID/Aadhaar. Registration will give doctors both aggregate information and patient-specific information. The latter will enable tracking patients as TB patients migrate.

The direction of migration noted is not rural-to-urban but rather urban-to-rural. Why only urban-to-rural migrants are a problem is not specified. Is there a presumption of less drug availability, less clinical knowledge, less data, or less effective adherence? Interesting that the return to the local “native place” becomes the clinical problem to be addressed.

Rural-to-urban migrants: not the clinical concern?

In my limited experience, patients in urban north India over the decades I have worked in clinical settings were far more likely than in the US to have control over their medical file, producing sections of it in doctors’ offices in order to create a range of desired clinical outcomes: files, that is, in theory migrated with patients anyway. TB differs, possibly for many reasons: adherence control in the face of drug resistance may mandate more intensive surveillance. Mobile medical knowledge, it would seem, can no longer depend upon patient-driven file mobility.

(2) Biopolitics and information failure: In the Maharashtrian case, the article implies that adherence failures and drug resistance may be due to a situation of information failure.

This is an idea worth thinking carefully about: that biopolitics is a matter of information adequacy in the face of certain forms of population migration. It develops the theme of deterritorialization: that UID/Aadhaar enables more flexible relations to place. Here surveillance is no longer a matter of the body fixed in its slum, repeatedly observed. The unit of analysis is now the ID number in a mobile trajectory. Somehow, the return to the village, to the native place, presents a particular clinical-informational deficit that the ID number must supplement.

What might it entail that fleshly conditions become digital conditions? I am not sure that there is much new here: surely the history of medicine long engages the relation of the sickness to the form of its representation.

Digital human lungs, for your consideration

(3) International informational standards: the WHO is positioned as an auditor here, and the Government of India must adjust its digitization accordingly. It would be interesting to think about the international governance of digitization, and how power here is organized and distributed.