SC takes a proactive approach towards “Leprosy”.

In the matter of Pankaj Sinha v. Union of India and others, a writ petition was filed under Article 32 of the Constitution of India seeking issuance of the following directions by the Hon’ble Supreme Court to the Union of India and the states:

  • To conduct periodic national survey for determining new cases relating to detection rate of leprosy.
  • To publish and bring in the public domain the reports of National Sample Survey on Leprosy conducted in 2010-2011.
  • To conduct regular and sustainable massive awareness campaigns for the general public to dispel the fear associated with leprosy.
  • To support and encourage the people afflicted by the said disease to lead a life of equality and dignity.
  • To direct the Central and State Governments that they ensure that the Multi-Drug Therapy (MDT) drugs and other drugs for management of leprosy and complications in leprosy are available free of cost and do not go out of stock at all Primary Health Centres (PHCs) in the country and
  • To direct all hospitals and health care institutions throughout the country, whether private or Government, not to discriminate against women with leprosy and not to turn them away and deny them treatment.
  • To issue mandamus to all the schools in the country not to discriminate against children from leprosy affected families and to provide them free education.
  • To provide hygienic conditions in leprosy colonies and to make MCR footwear available free of cost to the leprosy affected persons in the country.
  • To direct the Union of India to frame separate rules for evaluation of disabilities suffered by 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 (No. 49 of 2016).

It was further brought to the attention of the Court that as per the requirements of the World Health Organization (WHO), all countries are required to achieve a prevalence of less than one leprosy case per 10,000 persons and although India had declared way back in 31.12.2005 that it has achieved the said goal of elimination of leprosy, yet the progress reports of NLEP which have been reporting prevalence rate in certain States of the Ministry of Health and Family Welfare exposit an entirely different reality.

It was put forth that, as per the progress reports of NLEP, out of 642 districts in India, only 543 districts have achieved a prevalence rate of less than one case of leprosy for 10,000 persons. 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.

It was also contended that a National Sample Survey of Leprosy was conducted by the Union of India, yet the said survey has never been brought out in the public domain.

The Hon’ble Supreme Court thus on 14.09.2018 issued the following directions (Para 18)

  1. The Union and the States are to undertake periodical national surveys for determining the prevalence rate and new cases detection rate of leprosy and, at the same time, publish and bring the reports of the National Sample Survey of Leprosy conducted in 2010-11 and subsequent thereto into the public domain. That apart, the activities of the National Leprosy Eradication Programme (NLEP) must be given wide publicity;
  2. On leprosy day which is internationally observed every year on the last Sunday of January, the Union of India along with all State Governments should organize massive awareness campaigns to increase public awareness about the signs and symptoms of leprosy and the fact that it is perfectly curable by the Multi Drug Therapy (MDT). Awareness should also be spread about the free availability of MDT at all government health care facilities in the country, the prescribed course for MDT treatment and all other relevant information related to MDT. The content and information contained in the awareness programmes should discontinue to use frightening images of people disabled with leprosy and instead use positive images of cured persons sharing their experiences of being cured of leprosy;
  3. The Union and the States are to ensure that drugs for management of leprosy and its complications including the MDT drugs are available free of cost and do not go out of stock at all Primary Health Centres (PHCs) or, as the case may be, public health facilities in the country;
  4. All-year awareness campaigns should also be run, by the Union as well as the States, to inform the citizenry that under the National Leprosy Eradication Programme (NLEP), treatment is provided free of cost to all leprosy cases diagnosed through general health care system including NGOs;
  5. The Union and the States must organize seminars at all levels which serve as platforms to hear the views and experiences directly from the former patients and their families as well as doctors, social workers, experts, NGOs and Government officials;
  6. The awareness campaigns must include information that a person affected by leprosy is not required to be sent to any special clinic or hospital or sanatorium and should not be isolated from the family members or the community. The awareness campaigns should also 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 the society would go a long way in reducing the stigma attached to the disease;
  7. Health care to leprosy patients, at both Government as well as private run medical institutions, must be such that medical officials and representatives desist from any discriminatory behaviour while examining and treating leprosy patients. Treatment of leprosy should be integrated into general health care which will usher in a no-isolation method in general wards and OPD services. In particular, it must be ensured that there is no discrimination against women suffering from leprosy and they are given equal and adequate opportunities for treatment in any hospital of their choice. To this effect, proactive measures must be taken for sensitization of hospital personnel;
  8. Patients affected with leprosy, for whom partial deformity can be corrected by surgery, should be advised and provided adequate facility and opportunity to undergo such surgeries;
  9. The possibility of including leprosy education in school curricula so as to give correct information about leprosy and leprosy patients and prevent discrimination against them should be explored;
  10. The Union and the State Governments must ensure that both private and public schools do not discriminate against children hailing from leprosy affected families. Such children should not be turned away and attempt should be made to provide them free education;
  11. Due attention must be paid to ensure that the persons affected with leprosy are issued BPL cards so that they can avail the benefits under AAY scheme and other similar schemes which would enable them to secure their right to food;
  12. The Union and the States should endeavour to provide MCR footwear free of cost to all leprosy affected persons in the country;
  13. The States together with the Union of India should consider formulating and implementing a scheme for providing at least a minimum assistance, preferably on a monthly basis, to all leprosy affected persons for rehabilitation;
  14. The Union and the State Governments must pro-actively plan and formulate a comprehensive community based rehabilitation scheme which shall cater to all basic facilities and needs of the leprosy affected persons and their families. The scheme shall be aimed at eliminating the stigma that is associated with persons afflicted with leprosy.
  15. 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 (No. 49 of 2016).

Copy of Judgement: Judgement 14-Sep-2018

-Tushar Kaushik

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