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Leprosy and inequities in India’s healthcare: Beyond the persistent rhetoric of ‘Elimination’

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Even as India achieved statistical elimination of leprosy at the national level in 2005, the target continues to be part of the country’s policy documents. But what is “elimination”, to begin with? The policy documents are unclear of its operational definition, of whether it is at the national level, the state level or the district level. Despite lack of clarity, the political leadership has not failed to indulge in the rhetoric of “leprosy elimination”. In 2018, India was supposed to have achieved national level elimination—yet again. This paper argues that these declarations are devoid of any positive public health significance, and the country is a long way from eliminating leprosy at the state or district levels. As witnessed in 2005, the declaration only served to make officials complacent, shifting resources away from the programme itself. Meanwhile, the data show worrying new trends: Leprosy is becoming highly concentrated amongst the Adivasis (Scheduled Tribes); and the number and proportion of states and districts with elimination-level prevalence is fast decreasing. The paper makes a case for Ayushman Bharat to be the opportunity for streamlining case detection and treatment.

(Author's note: I would like to acknowledge two anonymous referees for their valuable inputs on an early draft of this paper; Vinia Datinguinoo Mukherjee for making the paper readable; and Vasundhara Singh for her assistance with the referencing.)

Attribution: Oommen C. Kurian, “Leprosy and Inequities in India’s Healthcare: Beyond the Persistent Rhetoric of ‘Elimination’”, ORF Occasional Paper No. 184, February 2019, Observer Research Foundation.

Current evidence shows that India has managed to improve population health at a considerable rate despite very low per-capita public spending. However, India’s health sector is also known for finding statistical targets that are either already achieved or easily achievable—and later declaring with fanfare that they have been “achieved”. The National Health Policy 2017 (NHP), for example, contained targets that have been described as spectacularly unambitious, including one on increasing life expectancy from 67.5 (2011[i]) to 70 by 2025.[ii] What NHP did not disclose—and the media did not discuss—was the fact that Indian women already achieved it in 2013, and that India has possibly crossed this milestone in 2018, given the rate of progress over the last decades.[iii] India’s recent achievement of the Maternal Mortality Ratio (MMR) target set out in the Millennium Development Goals (MDG) is another case in point. The Ministry of Health, disagreeing with the Ministry of Statistics, opted to cherry-pick the MMR baseline (1990) number from an international estimate and conveniently ignored the endline (2015) number—comparable with the baseline[iv]—from the same source. The choice of a higher number in the baseline made the fall in MMR look steeper than it actually was. The endline estimate based on the Sample Registration Survey (SRS) was selectively used despite the fact that the MMR estimates in the SRS have been regularly upwardly revised by the same international source.[v]

Such selectivity has also been seen with leprosy, with the NHP’s (2017) inclusion of a target of achieving and maintaining “elimination” status by 2018.[vi] Data journalism portal Fact Checker correctly identified this as a re-packaged target from the NHP 2002, and noted: “The 2002 NHP had set the target of eliminating leprosy by 2005, kala azar by 2010 and lymphatic filariasis by 2015–none of which could be achieved yet.”[vii] What Fact Checker failed to note was that the leprosy elimination target was indeed achieved in 2005, as per plans, when the prevalence rate came down to under one per 10,000 population.[viii]

Perhaps because of its inclusion in NHP, and partly due to the confusion between “elimination” (a target defined by the World Health Organization as prevalence level of less than one in 10,000 population) and “eradication” (zero new cases)— “elimination of leprosy” remains a favourite topic of senior ministers. From Prime Minister Narendra Modi,[ix] to Finance Minister Arun Jaitley in his 2017 Budget Speech, officials have repeatedly called for the elimination of leprosy.[x] Indeed, Health Minister Jagat Prakash Nadda declared in June 2018 that India would eliminate leprosy that year.[xi] Not to be outdone, the flagship annual publication of the Ministry of Health and Family Welfare, the Annual Health Profile of India (2018) states that leprosy has been “nearly” eliminated—this, despite the fact that elimination happened more than a decade ago.[xii] Latest reports indicate that the elimination target has been further pushed by the Ministry of Health to 2019.[xiii]

Official data show that the number of new leprosy cases detected during 2016-17 is 135,485 and the prevalence rate per 10,000 population as of March 2017 is 0.66. It is established, however, that these numbers underestimate the real leprosy burden. The Health Minister himself is on record saying that there may be 250,000 new leprosy cases every year, based on a sample survey by the Indian Council of Medical Research (ICMR), a government agency, in 2010-2011.[xiv] Interestingly, the results of this pan-India survey have not yet been released to the public. [xv]

To be sure, the issues surrounding leprosy in India involve not only the contradictory numbers. Equally importantly, India is also known to have passed laws that discriminate against persons with leprosy. One of the oldest, British-era laws (The Lepers Act of 1898)—which sanctioned the arrest and segregation of persons affected by leprosy into asylums—was repealed only as recently as in May 2016 by the current government.[xvi] Before the national-level abrogation, even though 12 states and five union territories had abandoned its application within their jurisdictions, the law continued to be in force in the rest of the country.[xvii] Further, it was only in 2015 when the use of the term “leper” was noted by the Law Commission of India to be derogatory. The Commission said Language was a medium that perpetuates existing stigmas, hampers efforts for the inclusion of Persons affected by leprosy into mainstream society, and affects their sense of dignity. The Commission recommended to replace the term “leper” and other such synonymous terms in national, regional or local languages in all government and private documents, to “persons affected by leprosy” or a similar term to that effect.[xviii]

Despite these orders, however, things have hardly changed. The Rajasthan Panchayati Raj Act, which was passed as late as 1994, states that a person is ineligible to contest local elections if s/he is a "leper or is suffering from any other bodily or mental defect or disease rendering him incapable for work." Even prominent national newspapers carry headlines such as “Pune hospital admits a family of lepers as number of new cases rises”.[xix] In January 2019, Lok Sabha Passed the Personal Laws (Amendment Bill) 2019 to remove leprosy as valid ground for divorce.[xx]

India has had major advances in battling leprosy. Graph 1 shows the country’s success in bringing down prevalence of leprosy over the last three decades. Internationally, the prevalence rate was brought under one per 10,000 population by 2000, and there was pressure on most endemic countries (such as India) to achieve the same at the national level at least by 2005, marking a significant milestone in the elimination of leprosy as a public health problem.[xxi] The current global prevalence is estimated by the World Health Organization (WHO) to be 0.23 per 10,000 population. In 2017, India along with Brazil and Indonesia were the only countries where more than 10,000 new cases were reported per year. For 2017, 135,485 out of the 204,686 new leprosy cases detected globally were in India – a staggering 66 percent. In other words, two out of every three new global leprosy cases are detected in India.[xxii]

Graph 1: Leprosy Prevalence Rate (per 10000) in India

Source: http://nlep.nic.in

WHO reports that the India National Leprosy Eradication Programme (NLEP) carried out an innovative Leprosy Case Detection Campaign (LCDC), which resulted in the detection of 34,000 new cases in 2016-17 from high endemic pockets. These cases accounted for 25 percent of new cases detected by the national programme.[xxiii] While these new detections are remarkable, India needs to bring down the prevalence rate further in order for the world to achieve overall progress, given its extreme case-load when compared to other countries. Unfortunately, as Graph 1 demonstrates, the rapid rates of reduction through the 1990s have slowed down, and the prevalence rates have plateaued. It is noteworthy that the prevalence rate plateaued around the time of the declaration of “Leprosy Elimination” in 2005.

Even though India has not been able to achieve elimination targets at the state and UT levels, the 12th Five-Year Plan set out to achieve elimination of leprosy at the district level by 2017.[xxiv] However, with NHP 2017, the country has regressed to a (re)elimination of leprosy at the national level itself. It is highly unlikely that state-level elimination can be achieved any time soon. In fact, although all States and UTs, barring Chhattisgarh and Dadra & Nagar Haveli, had achieved elimination by 2016, partly due to new case detection campaigns, five more States/UTs (Odisha, Bihar, Chandigarh, Goa and Lakshadweep) have reported a prevalence rate of higher than one per 10,000 population in 2017.[xxv] Given that the government has re-started active surveillance in most parts of the country, the proportion of such states is bound to increase in the short or medium run.

Another major concern is the proportion of children among new leprosy cases. While the proportion of child........