Reality different in ‘leprosy-free’ India, says Supreme Court

‘Cases underestimated, patients deprived of basic amenities’

September 14, 2018 09:39 pm | Updated November 28, 2021 10:01 pm IST - NEW DELHI

A walkathon at Chennai’s Marina Beach on January 30, 2016 to mark anti-leprosy day. Photo: Special Arrangement

A walkathon at Chennai’s Marina Beach on January 30, 2016 to mark anti-leprosy day. Photo: Special Arrangement

India “underestimated” leprosy and diverted funds meant to eliminate the curable disease for 18 long years, the Supreme Court said on Friday.

In its 22-page judgment, a Bench led by Chief Justice of India Dipak Misra pointed out that though the country was declared leprosy-free on December 31, 2005, the reality is “entirely different”.

The Supreme Court referred to progress reports of the National Leprosy Eradication Programme (NLEP) to show that only 543 districts of the total 642 districts in the country had achieved the World Health Organisation-required prevalence rate of less than one case of leprosy for 10,000 persons.

Suffering continues

“The underestimation of cases of leprosy and the declaration of elimination of leprosy has resulted in the integration of leprosy in general health services thereby leading to diversion of funds which would have otherwise been dedicated to eliminating leprosy,” Chief Justice Misra, who authored the verdict, wrote.

 

Meanwhile, patients and their families continue to suffer from leprosy and its stigma. They are even denied their fundamental right to food. They are not issued BPL (Below Poverty Line) cards to claim the benefit of various welfare schemes such as the Antyodaya Anna Yojana (AAY). They are deprived of housing, basic civic amenities, adequate sanitary facilities and rehabilitation programmes.

“At present, majority of the populace afflicted with leprosy live as a marginalised section in society, deprived of even basic human rights. This manifestly results in violation of the fundamental right to equality and right to live with dignity,” Chief Justice Misra observed for the Bench also comprising Justices A.M. Khanwilkar and D.Y. Chandrachud.

Calls for transparency

Issuing a slew of guidelines, the court directed the government to be transparent about leprosy and conduct periodic national surveys to gauge its detection rate. It should publish reports of the National Sample Survey on Leprosy conducted in 2010-2011. Both the Centre and States should embark on “regular and sustainable massive awareness campaigns” to educate the public about the Multi Drug Therapy (MDT) freely available at health centres to completely cure leprosy and dispel fear associated with the disease. The activities of the National Leprosy Eradication Programme (NLEP) must be given wide publicity.

The court banned the use of “frightening” images of leprosy patients, instead it called for the use of “positive” photographs of those cured of leprosy in the campaigns.

“Awareness campaigns should inform that a person affected with leprosy can lead a normal married life, can have children, can take part in social events and go to work or school as normal. Acceptability of leprosy patients in society would go a long way in reducing the stigma attached to the disease,” Chief Justice Misra observed.

Free education

The Centre and States should ensure that leprosy patients, especially women, do not face any discrimination or isolation at both government and private hospitals. The government should also ensure that private and public schools do not discriminate against children hailing from leprosy-affected families. They should be given free education.

Leprosy-affected persons should be given BPL cards. which would enable them to secure their right to food and be brought under the aegis of the Rights of Persons with Disabilities Act, 2016, the Supreme Court ordered.

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