New Delhi: Leprosy is back in India. Health officials and activists celebrated 13 years ago when India announced that leprosy had been eliminated as a public health concern. Alarm bells rang as the Central Leprosy Division of the health ministry reported that 135,485 new leprosy cases were detected in India in 2017. That meant every four minutes somebody was diagnosed with leprosy in India. This is nowhere close to elimination.
‘Elimination’ was confused with ‘eradication’--the latter refers to the complete and permanent reduction of new cases to zero--and the threat of leprosy was prematurely considered over. The government machinery that worked for leprosy elimination slackened, and its personnel were transferred to other health departments considered in more urgent need. Front-line workers stopped household visits to identify undetected cases. Under-reporting of cases Stoppage of active surveillance after the elimination announcement has led to severe under-reporting of cases in India, studies such as this one from Munger, Bihar, have pointed out. Finding an increase in ‘heightened disability’ among the new cases detected, a midterm evaluation of the National Leprosy Eradication programme in late 2016 said that this indicated “that the cases are being detected late in the community and there may be several cases which are lying undetected or hidden”. These hidden cases are dangerous because untreated patients are “an active reservoir in the community which transmit the disease to [the] susceptible”, the review said. It also found a large number of children https://www.prsindia.org/content/personal-laws-amendment-bill-2018. Yet, several activists and researchers who work with leprosy patients told IndiaSpend, while insisting they not be named, that the government is resisting documentation of new cases. They pointed out, for example, that for several years after 2005, the number of new leprosy cases detected hung around the figure of 130,000 annually as it was deliberately kept within the elimination range (0.01% of India’s 1.3 billion population). The official number of new patients “is largely coming from passive reporting as there is no nationwide move to detect cases”, Ashim Chowla, chief executive of Lepra Society, Secunderabad, told IndiaSpend. Places such as Delhi, Chandigarh, Dadra and Nagar Haveli, Odisha, West Bengal and Lakshadweep, which were at the forefront of elimination targets, are now among the worst affected. Kerala, for instance, which has the best health indicators in India and once had the lowest rates of leprosy, now has a large number of leprosy patients--probably because of the high number of migrant labour that comes in from Uttar Pradesh, Bihar, West Bengal and Odisha, where wages are lower. Early detection and treatment In case of leprosy, early detection and treatment before any disability sets in is important, as is rehabilitation of those who have been disabled so that they can live independently and carve out a dignified life. But society is rife with stigma and discrimination. Health activists have to fight numerous myths that have caught on because of poor understanding of the disease. One such myth is of leprosy being divine punishment for past sins. Stigma prevents most patients from seeking medical treatment until it is too late, activist Vineeta Shanker, executive director of Sasakawa India Leprosy Foundation, points out. Nerve damage is irreversible and once disabilities set in, social rehabilitation becomes very challenging. “We have to struggle even with the highly educated as well as opinion makers,” Chowla said. “Fairly recently, the Pope said that child abuse was like ‘leprosy in our house’. Because of the stigma involved, patients try to hide it. Changing attitudes takes time; even the government does not have the wherewithal to deal with something so complicated and produce quick results. This requires involvement of all stakeholders and drivers of change.” Recently, parliament passed an amendment to remove discrimination against leprosy patients in various laws, especially those governing marriage and divorce, across faiths. There were 119 such laws, which blatantly discriminated against leprosy patients--for instance, by holding leprosy a valid reason for divorce, and considering leprosy an “incurable and virulent” disease. The government is also working on a draft bill to eliminate discrimination against persons affected by leprosy. There are practical problems in detection, too. All parts of the patient’s body need to be examined, in good light, but most places where patients are examined are poorly lit. Male staff often shy away from asking women, especially in villages, to take off their clothes for examination. Many women refuse to do so. This means small diseased patches, of which even the patient is unaware, go undetected. Once detected, the government treats leprosy patients for free. Patients are administered a multidrug therapy--a combination of different drugs--which is very effective and usually cures within six to 12 months. As essential as early detection and treatment is post-treatment follow-up to detect relapse and identify drug-resistant strains. The success of the anti-tobacco movement gives Chowla hope. “Leprosy needs something similar with corporate, private institutions and NGOs putting their commitment behind eradicating the disease,” he said. Since leprosy mainly affects the poor, it does not get the attention it deserves. The challenge is to end transmission by detecting cases and immediately putting them on multi-drug therapy, which should be made available even in the remotest parts of India. “There is no solid infrastructure at the moment that is geared to either detect and treat or end discrimination against patients,” he said.
Targets Of New Global Strategy For 2020
- Zero disabilities among new pediatric patients.
- Achieve a disability rate of less than 1 case per 1 million people.
- Zero countries with legislation allowing discrimination on basis of leprosy.
- Sustained and committed efforts by national programmes along with continued support from national and international partners.
- Increased empowerment of people affected by the disease, together with their greater involvement in services and the community bringing us closer to a world without leprosy.
Source: World Health Organization (June 2017)
(Ramesh Menon , is an author, independent award-winning journalist, documentary film-maker and adjunct professor at Symbiosis Institute of Media and Communication.)
(Paliath is an analyst with IndiaSpend.)
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