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The Supreme Court today issued a slew of directions to the Central and State governments in order to spread awareness about leprosy and to facilitate a life of equality and dignity for those affected by the disease.
In a judgment delivered by a Bench of Chief Justice of India Dipak Misra, Justice AM Khanwilkar and Justice DY Chandrachud, the Court directed the governments to carry out periodic surveys to determine new cases of leprosy, to publish in public domain the data from 2010-11 on this subject and to carry out awareness campaigns.
The Court noted in the judgment that despite being a curable disease, leprosy had a stigma attached to it which pointed towards the issue of lack of awareness.
“…although leprosy as a disease has been scientifically and medically proven to be curable and manageable with MDT, yet the fact remains that millions of people and their family members still suffer from leprosy and the social, economic and cultural stigma attached to the said disease. This fact reveals the lack of awareness and the prevailing misguided notions in the society pertaining to leprosy.”
It also observed that the majority of the people suffering from leprosy are also discriminated against and live a marginalized life while also dealing with discrimination in terms of denial of access to health care and livelihood options.
“At present, majority of the populace which is afflicted with leprosy live as a marginalized section in the society deprived of even basic human rights which manifestly results in violation of the fundamental right to equality and right to live with dignity.”
The judgment also delves into the figures as regards the prevalence of leprosy in India as compared to the required rate of prevalence laid down by the World Health Organisation (WHO). According to WHO, all the countries are required to achieve the prevalence rate of less than one leprosy case per 10000 people. India had declared that it had achieved this goal as far back as in 2005, the Court noted.
However, according to Ministry of Health data, only 543 districts out of a total of 642 in India have in reality achieved this goal. In this regard, the Court said,
“The underestimation of the 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.”
During the course of the hearing on the case, the Court was also apprised of various instances of discrimination meted out to leprosy patients in India, be it at government hospitals or the field of education and even in terms of issuing Below Poverty Line (BPL) cards to those afflicted by leprosy.
The Court, therefore, found it prudent to issue the following directions:
The Union and State governments are directed to undertake periodic surveys to document new cases of leprosy and are also directed to publish the National Sample Survey (NSS) on Leprosy report from 2010-11. Additionally, activities of National Leprosy Eradication Program (NLEP) is to be given wide publicity.
Union and State governments to undertake large scale awareness campaigns about Leprosy and its curability through Multi Drug Therapy (MDT) on Leprosy Day which is observed on Last Sunday of January. The awareness campaigns should also carry information regarding availability of free MDT at government hospitals and also about signs and symptoms of leprosy.
The Governments at both Centre and State level must ensure that MDT is available free of cost at every Government Hospital and Public Health Centres (PHC) and do not run out of stock.
Awareness campaigns throughout the year to be conducted by the government to inform the citizenry about the NLEP as well as conduct seminars to serve as platforms for former leprosy patients, doctors and social workers to deliver talks to spread more awareness.
The awareness campaigns must inform the citizens that leprosy patients do not need t be isolated and can lead a normal life. The Court remarked, “Acceptability of leprosy patients in the society would go a long way in reducing the stigma attached to the disease”
Government hospitals as well as private hospitals to ensure that leprosy patients are given treatment without any discrimination and proactive measures must be taken to sensitize hospital personnel in that regard.
Lepsrosy patients must be given BPL cards to enable them to benefit under the AAY scheme.
The governments to formulate and implement rehabilitation measures and provide assistance to leprosy patients and their families.
The Union Government may consider framing separate rules for assessing the disability quotient of the leprosy affected persons for the purpose of issuing disability certificate in exercise of the power granted under the Rights of Persons with Disabilities Act, 2016.
Read the Judgment below.