Securing health care within a ‘magical’ state: the construction of eligibility in India

ABSTRACT

In India, marginalised people with serious or chronic illness face particular challenges to finding sustainable treatment, and often experience financial devastation. One state welfare scheme (the EWS hospital bed quotas) holds the promise of treatment for those in Delhi's margins, through partnerships with corporate hospitals. Yet, the process of gaining access to treatment via the scheme is very frustrating. This ethnography illustrates the ways in which low-income patients’ attempts to lay claim to state services often bring them into play with a mode of the state that is, in anthropologists’ conceptions, opaque, arbitrary and erratic. In response to the ‘illegible’ modes of access to the scheme, patients and their families are compelled to construct and reproduce their eligibility to access treatment, through a repertoire of intricate and entwined practices, namely: the attainment of credible low-income documentation, the use of big men to leverage resources, and different kinds of performance. The burden of enacting these practices is further compounded and troubled by the state scheme's blurry entanglement with the private sector, in which roles and responsibilities for a ‘duty of care’ to citizens with illness are elusive. This paper therefore aims to be an original contribution to the social sciences, in interpreting health-seekers’ experiences of state-private schemes in Delhi within anthropological understandings of the state and marginalised people's meaning-making of illegible state processes.

KEYWORDS:

• India
• health care
• state
• access
• equity

Acknowledgements

This article was written when I had the good fortune to undertake a writing residency at the Brocher Foundation, Switzerland. I thank my colleagues there for their feedback on my presentation. I also thank Sara Ten Brinke for her feedback on the final drafts, as well as the anonymous reviewers for this journal.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Notes

1 ‘Jeet Nagar’ is a pseudonym, as the name of the neighbourhood and the names of participants in this ethnography have been changed in order to protect participants’ anonymity.

2 One-third of people on dialysis in India become infected during treatment with viruses such as Hepatitis C, Hepatitis B or HIV, which is attributable to human error by dialysis staff (Dialysis in India 2010). This is a much higher rate than in other parts of the world.

3 See also: Broom and Doron (2012); Das (2015); Gadre and Shukla (2016); Prasad et al. (2017); Sengupta and Prasad (2011); Singh (2015).

4 At the most, 15% of the Indian population holds health insurance (GOI 2016a). This is comprised of well-off people holding private insurance, as well as a handful of specific population groups such as government employees and factory workers who belong to organised health insurance schemes.

5 The former Rashtriya Swasthya Bima Yojana (RSBY) health insurance scheme for low-income people was implemented in some states in India (but did not take off in Delhi). The scheme posed various hurdles for patients: In order to register for the RSBY scheme, families had to already be registered with local authorities as being Below the Poverty line (BPL), or had to be in certain categories of unorganised workers (Ghosh and Gupta 2017, 7; Prasad 2019, 57). (Chandra's family fitted into neither of these categories.) The RSBY scheme has broadly been deemed to have failed throughout India, as it: reached only a small percentage of BPL families; its focus on coverage for hospital-based tertiary care failed to protect families from high out-of-pocket expenditure that is mostly occurred in inpatient care; and the scheme sometimes even increased patient expenditure (Karan, Yip, and Mahal 2017; Khetrapal and Archarya 2019; Kurian 2015; Selvaraj and Karan 2012; Sinha and Chatterjee 2014, 231; Sriram 2018). Further problems included that: empanelled private hospitals tended to ‘cherrypick’ profitable RSBY packages while refusing to treat patients with general illnesses; hospitals performed unnecessary surgeries for profit; the lack of infrastructure in rural areas which posed hurdles for the provision of healthcare; and the de-empanelling of high numbers of hospitals from the scheme due to fraud (Prasad 2019, 57). The RSBY scheme was subsumed into the new PMJAY (‘Modicare’) scheme which was launched in 2018 (GOI 2018), but the latter continues with the same discredited insurance model. See footnote 14 for more about PMJAY.

6 EWS more broadly refers to a governmental category of low-income people who are eligible to access quotas for free services, for example, for children's private school education and hospital treatment. The EWS category draws a broader net than the Below Poverty Line (BPL) category (which applied to the former RSBY hospital insurance scheme), and includes diverse people from the ‘most vulnerable communities’ such as homeless, migrants, displaced – people who may not have eligibility proof as they are a floating population, and who have the least access to information about the provisions (SAMA 2011, 44).

7 While accounts vary of the number of private hospitals that have received land concessions from the Delhi government over the last 30 years, the Delhi government in 2011 identified 37 private hospitals that were obliged to provide free treatment to poor people (GNCTD 2011), Some hospitals have contested their obligations in the courts or have sought exemptions, and their current status is uncertain. Therefore the figure of 40 is an approximation at the time of publication.

8 Measures such as an online booking facility for free beds, nodal officers in hospitals, and a monitoring committee were announced in 2014 (GOI 2014), but activists and patients claimed that these measures rarely functioned as announced.

9 While the national Aadhaar biometric identity card scheme was introduced in 2016 with the aim to circumvent bureaucrats’ discretionary judgements about applicants’ suitability to receive a service (Cohen 2019, 490), the EWS scheme is not linked to the Aadhaar scheme, and it is not a condition of entry to the scheme that EWS patients must show an Aadhaar card.

10 The prevalence of diabetes is as high as 28% in urban people over 40 in India (Varma 2015, 133). One third of 60 million diabetic people in India will go on to develop chronic kidney disease (diabetes being the main cause of chronic kidney disease in India) (Dheerendra 2016). An estimated one-two million people in India are required to undergo dialysis three times each week (IFC 2015; Dheerendra 2016).

11 The dialysis company's website and my own informal conversations with company staff suggests a company rhetoric that is market-focused, reflecting themes of supply and demand, rapid global expansion, return on investment, and appeal to global venture capitalists.

12 This conception that poor people are extremely intimidated by super specialty hospitals in India is supported by Gorringe, Jeffery and Sariola, who state that such hospitals ‘might as well have a sign outside forbidding the poor from even dreaming of getting access’ (2009, 2).

13 Research undertaken on PPPs in India by scholars in disciplines such as business management studies and public health has generally not included the experiences of health system users, and has instead focused on infrastructure, service delivery, management and finance, often with the goal of providing management recommendations to better meet the state's goals of service delivery, or to identify avenues to profits for private partners.

14 The Indian government's new Pradhan Mantri Jan Arogya Yojana (PMJAY) health insurance scheme (GOI 2018), commonly referred to as ‘Modicare’, claims to offer 100 million vulnerable families an annual cover of Rs5 lakh (about €5700) for secondary and tertiary care hospitalisations. PMJAY's approach builds on the failed RSBY insurance-model (see footnote 5), and has been widely critiqued for: the diversion of public resources towards insurance companies and unregulated private hospitals; a focus on hospital-based tertiary care whereas most out-of-pocket patient expenditure is incurred in outpatient care and therefore not covered by the insurance scheme; and an undermining of the universal health coverage approach and a strong public health system, in favour of a ‘for profit’ privatised healthcare model – all of which disadvantage already-marginalised populations (Barai-Jaitly and Ghosh 2018; Brundtland 2018; Das, Aiyar, and Hammer 2018; Ghosh 2018; Ghosh and Gupta 2017; Jan Swasthya Abhiyan 2018, 2019; Keshri and Subodh 2019; Prinja et al. 2017; Rajalakshmi 2019; Shukla 2019).

Additional information

Funding

The research for this paper was supported by grants from the German Research Foundation and Macquarie University, Australia.

Notes on contributors

Lesley Branagan

Lesley Branagan is a social anthropologist whose work focuses on themes of health, gender and religion in India. Her PhD (from Leipzig University, 2019) was an ethnographic analysis of the interrelationship between illness, suffering, crisis of care and agency in a low-income neighbourhood in New Delhi. Her other research has addressed faith healing sites in India that have incorporated psychiatric services in a ‘medicine and prayer’ healing model; issues of gender and kinship in India; and transgender rituals in the Aravan worship tradition in Tamil Nadu. She also makes documentary films.