Case Title: Pankaj Sinha Vs. Union of India (UOI) and Ors., MANU/SC/0986/2018
The Supreme Court in this recent judgment, issued directions to the Centre and State governments towards rights of people with Leprosy, including the repeal of archaic and discriminatory laws that categorise leprosy as non-curable and contagious, and the framing of rules for evaluation of disabilities by leprosy affected persons, awareness campaigns for general public, free of cost and in stock medicines in PHC’s and civil hospitals to enshrine their right to live to live with dignity.
Edited excerpts from the judgement are provided herein under:
“1. The instant writ petition preferred Under Article 32 of the Constitution of India seeks issue of directions to the Union of India and the States, the Respondent Nos. 1 to 30 herein, to conduct periodic national survey for determining new cases relating to detection rate of leprosy and to publish and bring in the public domain the reports of National Sample Survey on Leprosy conducted in 2010-2011 and further to conduct regular and sustainable massive awareness campaigns for the general public to dispel the fear associated with leprosy and support and encourage the people afflicted by the said disease to lead a life of equality and dignity.
- It is also prayed that the Respondents should ensure that 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 also 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. A relief is also sought 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. The Petitioners also seek for providing hygienic conditions in leprosy colonies and to make MCR footwear available free of cost to the leprosy affected persons in the country. That apart, a prayer has been made 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).
- On 28th November, 2014, the Court passed the following order:
Mr. Maninder Singh, learned Additional Solicitor General appearing for Union of India prays for four weeks time to file the requisite data as directed by this Court vide order dated 1.9.2014. Mr. Singh has assured this Court that he will not seek further adjournment.
The Respondent States shall file their respective replies within the said period. If, they are unable to collect the data throughout the State, whatever data they have collected during the time granted by us, shall be brought on record.
- On 13th January, 2015, after taking note of the submissions made by the learned Counsel for the parties, the Court had noted thus:
Needless to say, curability is admitted depending upon the degree. As advised at present, we are of the convinced view that more progressive steps are required to be taken by the Union of India and the States. It would be advisable, if the Union of India and the States can think of having Leprosy Cure Centres, where medication follow up and other treatment protocols are followed in proper prospective so that the stigmatic disease is eradicated or reduced to a significant percentage. Mr. Maninder Singh, learned Additional Solicitor General and other learned Counsel appearing for various States pray for four weeks’ time to obtain instructions in this regard.
- Taking into consideration the affidavits filed and instructions obtained, the Court, on 23rd April, 2015, passed the following order:
It is submitted by Mr. Maninder Singh, learned Additional Solicitor General appearing for Union of India, that as far as prayers (A) and (B) are concerned, he will produce the data and the report as prayed for and also file a reply supported by an affidavit in that regard. As far as prayer (E) is concerned, we would like Mr. Maninder Singh, learned Additional Solicitor General to obtain instructions whether the concerned Ministry, i.e., Ministry of Health and Family Welfare, Government of India, has any team which is exclusively meant to look after the leprosy homes or leprosy colonies and eventually the patients suffering from leprosy. We would like the affidavit to contain what kind of treatment is administered when the initial symptoms get manifested. In essence, whether there is any machinery to that effect. We have so directed as there is no dispute that the leprosy is totally curable in 21st century. We accept the submission of Mr. Kamlesh Kumar Mishra, learned Counsel for the Petitioner that the Union of India and all the State Governments have a duty to see that this century old stigmatic disease is eradicated. We also accept his submission that it can be done with a concerted effort by the Union of India and the States.
- It is worthy to note here that during the pendency of this writ petition, another Writ Petition (Civil) No. 1151 of 2017 was filed seeking the relief that number of legislations be declared as unconstitutional being violative of Articles 14, 19(1)(d), 19(1)(g) and 21 of the Constitution of India. In the course of hearing of the said writ petition, our attention had been drawn to the 256th Report of the Law Commission. The said report had been submitted on the basis of the initiative taken by the Union of India titled “Legal Enactments Simplification and Streamlining”. The Law Commission had referred to the provisions of the Leprosy Act and adverted to the Second Interim Report No. 249 wherein it had been mentioned that India is a member of the U.N. General Assembly which unanimously passed a resolution on the elimination of discrimination against persons affected by leprosy and their family members. As per the Law Commission Report, the Leprosy Act was against the spirit of the Resolution and, therefore, required immediate repeal in consultation with the States
Eventually, after analysing various aspects, the Law Commission recommended as follows:
7.13 This statute should be titled as the “Elimination of Discrimination against Persons affected by Leprosy Bill, 2015”. This standalone law, apart from comprehensively covering the repeal/modification of the specified statutes, shall contain principles of nondiscrimination and equal protection before law. These principles shall specify that (1) No person, or public or private establishment shall discriminate against any person affected by Leprosy, or members of his family on any ground in relation to their affliction of Leprosy, or their disability, physical attributes or any other form of their association with Leprosy; and (2) All persons affected by Leprosy and members of their family shall be entitled to the recognition, enjoyment and exercise, on an equal basis, of all human rights including freedoms guaranteed by the Constitution of India. Further, the law shall also contain enabling provisions regarding affirmative action and repeal and amend discriminatory provisions listed above. Also provided for a draft bill on the same.
- In the instant writ petition, the Petitioner has drawn the attention of the Court to the fact that 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. Further, the miserable plight of the persons afflicted with leprosy does not end here. It has been highlighted that due to the disability that entails as a result of the disease, the people affected by leprosy suffer additional discrimination in the form of denial of access to health services, education 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.
- It has been 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. As per the said reports, 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.
- The Petitioners have expressed deep concern over the fact that although a National Sample Survey of Leprosy was conducted by the Respondent No. 1, Union of India, yet the said survey has never been brought out in the public domain. The desired results have not been achieved due to improper dispensation of the MDT drugs through the PHCs established for the said purpose. It is urged that the staff of PHCs display sheer lack of sensitivity while dealing with patients affected with leprosy as a consequence of which the level of stigma and isolation still prevails amongst the said patients. Several incidents have also been reported which have brought to light the discriminatory treatment meted out by the Government hospitals to leprosy affected pregnant women and cases wherein women have been refused treatment solely on account of being affected by leprosy. Another aspect, that is, the area of education has also been brought forth by the Petitioners. It has been urged that lack of adequate education facilities would further magnify the sense of insecurity and stigma prevailing amongst the persons affected with leprosy. For any development to take place, the first step would be in the direction of ensuring quality education for the children who are the wards of people affected with leprosy.
- It has been pointed out that several instances have come to fore highlighting that the persons affected with leprosy are being provided with APL cards and not BPL cards which prevented these people from claiming benefits under various schemes brought out by the Government, such as the Antyodaya Anna Yojana (AAY), which again deprives this Section of the populace from claiming their right to food. Deprivation of housing and other basic civic amenities, adequate sanitary facilities and rehabilitation programmes are yet other serious concerns which, if not addressed, would lead to the entire reformatory process taking a huge setback. 14. In the instant writ petition, the Petitioner has drawn the attention of the Court to the fact that 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. Further, the miserable plight of the persons afflicted with leprosy does not end here. It has been highlighted that due to the disability that entails as a result of the disease, the people affected by leprosy suffer additional discrimination in the form of denial of access to health services, education 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.
- It has been 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. As per the said reports, 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.
- The Petitioners have expressed deep concern over the fact that although a National Sample Survey of Leprosy was conducted by the Respondent No. 1, Union of India, yet the said survey has never been brought out in the public domain. The desired results have not been achieved due to improper dispensation of the MDT drugs through the PHCs established for the said purpose. It is urged that the staff of PHCs display sheer lack of sensitivity while dealing with patients affected with leprosy as a consequence of which the level of stigma and isolation still prevails amongst the said patients. Several incidents have also been reported which have brought to light the discriminatory treatment meted out by the Government hospitals to leprosy affected pregnant women and cases wherein women have been refused treatment solely on account of being affected by leprosy. Another aspect, that is, the area of education has also been brought forth by the Petitioners. It has been urged that lack of adequate education facilities would further magnify the sense of insecurity and stigma prevailing amongst the persons affected with leprosy. For any development to take place, the first step would be in the direction of ensuring quality education for the children who are the wards of people affected with leprosy.
- It has been pointed out that several instances have come to fore highlighting that the persons affected with leprosy are being provided with APL cards and not BPL cards which prevented these people from claiming benefits under various schemes brought out by the Government, such as the Antyodaya Anna Yojana (AAY), which again deprives this Section of the populace from claiming their right to food. Deprivation of housing and other basic civic amenities, adequate sanitary facilities and rehabilitation programmmes are yet other serious concerns which, if not addressed, would lead to the entire reformatory process taking a huge setback.
Directions/Order
- Keeping in view the factual matrix in entirety and the submissions advanced, we think it appropriate to issue the following directions:
(i) 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;
(ii) 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;
(iii) 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;
(iv) 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;
(v) 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;
(vi) 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;
(vii) 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;
(viii) 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;
(ix) 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;
(x) 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;
(xi) 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;
(xii) The Union and the States should endeavour to provide MCR footwear free of cost to all leprosy affected persons in the country;
(xiii) 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;
(xiv) 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.
(xv) 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).”
