Historical aspect of Leprosy:
There have been a number of myths and misconceptions about leprosy in India for centuries. According to old tales, Leprosy is a genetic and contagious disease caused by dirty blood and poverty. Many people also believe that Leprosy is spread through food and water and that it is difficult to diagnose. All such views are not based on evidence and hence are unfounded.
Scientific outlook on Leprosy:
Scientifically, Leprosy is caused by the causal agent Mycobacterium Leprae, which is not a hereditary disease and is not caused by dirty blood or poverty. Although being a chronic infectious condition, Leprosy is not difficult to identify or treat. Early detection and treatment consistency are the most important factors in a successful Leprosy treatment. While not everyone is vulnerable to Leprosy, unsanitary environments, malnutrition, and a lack of personal cleanliness might raise the risk of infection with the Hansen’s disease bacillus, as well as a variety of other diseases and infections induced by similar conditions. Furthermore, Hansen’s disease is not a fatal disease, despite the fact that the stigma and discrimination associated with it can leave victims with long-term psychological and social consequences.
Successful Treatment: The treatment that has made it possible to cure Leprosy is the process of Multi-Drug Therapy (MDT), which was first recommended by the WHO in early 1980s after over 40 years of research and testing. Under MDT, powerful drugs such as Rifamipicin, Clofazimine and others in combination with Dapsone, are administered to the affected person to effectively fight the Hansen’s disease bacillus. Over the past two decades, more than 15 million Persons affected by Leprosy are said to have been cured under MDT.
PIL for dispelling fear related to leprosy
A public interest litigation was filed before the Hon’ble Supreme Court for directing central government to oversee a national survey periodically for identifying new cases of Leprosy, its detection rate and to publish them in the public domain so as to dispel fear related to leprosy. The Hon’ble Supreme Court in Pankaj Sinha vs. Union of India and Ors. Writ Petition (Civil) No. 767 of 2014, vide order dated 14.09.2018 issued guidelines to the Union of India. These guidelines have been rephrased for better understanding:
(i) The Union and the States must conduct periodic national surveys to determine the prevalence rate and new cases detection rate of Hansen’s disease and, at the same time, publish and make available to the public the results of the National Sample Survey of Leprosy conducted in 2010-11 and subsequent surveys. Apart from that, the National Leprosy Eradication Programme (NLEP actions) must be widely publicized;
(ii) On World Hansen’s disease Day, which is observed every year on the last Sunday in January, the Union of India, in collaboration with all State Governments, should conduct massive public awareness campaigns to raise public awareness about the signs and symptoms of leprosy, as well as the fact that it is completely curable with Multi-Drug Therapy (MDT). The free availability of MDT at all government health care institutions in the country, the prescribed course for MDT therapy, and all other essential information concerning MDT should also be promoted. Instead of frightening images of people crippled by leprosy, positive images of cured people sharing their stories of being cured of leprosy should be used in the content and information of awareness programs;
(iii) The Union and States must ensure that pharmaceuticals for the treatment of leprosy and its complications, particularly MDT treatments, are provided for free and do not run out of stock in all Primary Health Centres (PHCs) or public health facilities throughout the country;
(iv) The Union and States should conduct year-round public awareness efforts to remind citizens that all leprosy cases detected through the general health care system, including NGOs, are treated free of charge under the National Leprosy Eradication Programme (NLEP);
(v) At all levels, the Union and States must hold seminars to hear directly from former patients and their families, as well as doctors, social workers, experts, NGOs, and government officials, about their perspectives and experiences;
(vi) Information about how a person with leprosy does not need to be sent to a separate clinic, hospital, or sanatorium and should not be segregated from family members or the community should be included in the awareness campaigns. The public awareness efforts should also emphasize that a leprosy patient can live a regular married life, have children, participate in social activities, and go to work or school as usual. Acceptance of Hansen’s disease patients in society would go a long way toward decreasing the disease’s stigma;
(vii) Medical care for Hansen’s disease patients shall be provided in such a way that medical officials and representatives refrain from discriminating behavior when inspecting and treating leprosy patients, in both government and private medical facilities. Hansen’s disease treatment should be integrated into general health care, resulting in a no-isolation approach in general wards and outpatient clinics. It must be ensured, in particular, that women with leprosy are not discriminated against and that they are provided equal and adequate treatment options in any hospital of their choice. To this end, aggressive steps for hospital staff sensitization are required;
(viii) Patients with Hansen’s disease who have a partial deformity that can be repaired by surgery should be informed and given enough facilities and opportunities to do so;
(ix) It should be investigated whether leprosy education should be included in the school curriculum in order to provide accurate knowledge about leprosy and leprosy patients and to prevent discrimination against them;
(x) The Union and state governments must ensure that children from leprosy-affected households are not discriminated against in both private and public schools. Such children should not be turned away and should be given the opportunity to receive a free education;
(xi) Careful attention must be taken to ensuring that people living with leprosy are provided BPL cards so that they can benefit from the AAY scheme and other comparable programs that protect their right to food;
(xii) The Union and States should make every effort to offer MCR footwear to all leprosy patients in the country at no cost;
(xiii) The States, in collaboration with the Union of India, should consider developing and implementing a system to provide at least a minimal level of rehabilitation assistance to all Hansen’s disease patients, ideally on a monthly basis;
(xv) The Union and State Governments must work together to create and implement a comprehensive community-based rehabilitation program that meets all of the fundamental needs of leprosy patients and their families. The project would be focused on eradicating the stigma associated with people who have leprosy;
(xv) In exercising the power given under the Rights of Persons with Disabilities Act, 2016, the Union Government may consider making separate rules for determining the disability quotient of leprosy-affected persons for the purpose of granting disability certificates (No. 49 of 2016).
The impact of PIL on Leprosy as a ground of Divorce
Apart from other Acts related to divorce in India, Virulent incurable form of Leprosy got recognized as grounds of Divorce under Section 13 (iv), Hindu Marriage Act, 1955 after the Act came into force.
In its findings, the Law Commission suggested that discriminatory laws and provisions against leprosy patients be repealed. In addition, India is a signatory to a United Nations Resolution that calls for the abolition of prejudice against leprosy patients. The Hon’ble Supreme Court ordered the Union government and State governments through various interim orders in Pankaj Sinha vs. Union of India and Ors. to take steps to rehabilitate and integrate leprosy patients into society.
The judgment passed 14.09.2018 by the Hon’ble Supreme Court in Pankaj Sinha vs. Union of India and Ors. Writ Petition (Civil) No. 767 of 2014 had a significant aftermath on the Leprosy as it has been removed from the grounds of divorce in various Acts governing marriage.
As a civilized nation, India shall stand for human rights for every citizen, especially the poorest and vulnerable population. Hansen’s disease as a social condition was glaring at the Constitution of India as it is against the spirit of the Constitution. The judgment passed by the Hon’ble Supreme Court in Pankaj Sinha vs. Union of India and Ors. has given hope to all the citizens that the Supreme Court is Peoples’ Court and it will remain committed to the social causes. The credit must also be given to the Union Government that agreed to take effective measures at a faster pace in furtherance of the judgment passed by the Hon’ble Apex Court.