Although, Father of our Nation succeeded in casting out the foreign invaders from our country, His efforts to integrate leprosy patients and cast out discriminatory attitude from the minds of the people still remain a daunting task to be accomplished. As India observes the 152nd birth anniversary of Mahatma Gandhi, we are reminded of the fact that even the world recognizes his contribution towards the people affected by leprosy and observes his death anniversary on January 30th as the World Leprosy Day.
The fact is that discriminatory attitude still prevail in the minds and hearts of the people in our society and several anti-leprosy legislations still exist in the legal books which act as a barrier in addressing the stigma attached to leprosy. The discriminatory provisions in certain Acts stand as barrier to empowerment. Several of such Acts are old and were enacted at a time when leprosy was considered as contagious and incurable. As indicated, this is no longer the case, but antiquated provisions about leprosy in the Statute Book have not undergone changes. Over 119 such discriminatory laws on leprosy at the national and state level exist in the Law book.
Anti-leprosy legislation and discrimination:
The Bill to remove leprosy as a ground for divorce in five personal laws – Hindu Marriage Act, Dissolution of Muslim Marriage Act, Divorce Act (for Christians), Special Marriage Act and the Hindu Adoptions and Maintenance Act was passed by Lok Sabha on January 7, 2019. The Bill was introduced in the Lower House a year before in August 2018. The Bill is yet to be presented in the Rajya Sabha. The Human Rights Commission and judgments of various courts had also underlined the need to amend the laws to remove this discrimination. The Law commission in its report had also recommended repeal of laws and provisions which were discriminatory against Leprosy Affected People (LAP).
Both government policies and medical science have contributed to eradicating leprosy from the country. The National Leprosy Eradication Programme (NLEP) and the multi-drug therapy (MDT) provided the necessary impetus to reducing the prevalence of the disease from most parts of the country.
A National level consultation comprising the Government authorities, leprosy affected people and the agencies working for them came together in 2007 to identify, discuss and advocate towards the amendment of discriminatory laws on leprosy. Around 20 such laws at the National level and above 40 at the state level were identified and efforts initiated to amend the discriminatory laws. A petition was submitted to the Chairman, Rajya Sabha in the year 2007 seeking integration and empowerment of Persons Affected by Leprosy and identification and repealing of discriminatory provisions in law. Following the submission of petition, a Parliamentary Committee was appointed to consider the petition and look into the matter. It took over ten years for the Lower House to have passed the Bill to amend the divorce laws on leprosy.
However, despite spectacular success in elimination of leprosy, the disease is still treated as a social stigma in some parts of the country. Because of the social stigma, the Persons Affected by Leprosy have been residing in self-settled colonies in miserable conditions, far away from the main cities and have been begging for their sustenance.
It has been estimated that there are around 800 self-settled colonies of the Persons Affected by Leprosy which lack basic amenities like potable water, drainage, toilets, etc. Those who have been fully cured but have physical deformities are still treated as untouchable due to the social stigma. Even their wards staying in the self-settled colonies are denied admission to the educational institutions. Several of them lose employment and are denied access to public places. In short, stigma manifests in social, economic, and occupational levels.
Along with the discriminatory laws on leprosy, stigma is another propelling factor which is responsible for downgrading the morale of leprosy patients. Leprosy colony, the name in itself, debars the common man from entering their residing area. In a recent move, the Bihar Government has taken the initiative of renaming all the leprosy colonies, 51 in Bihar, excluding the word leprosy or kusht. The effort will go a long way in bringing the leprosy patients into the mainstream of the society. And, help in changing the mindset of a common man towards them and avoid discrimination.
According to Subash Mohapatra, an advocate and the director of the Forum for Fact Finding Documentation and Advocacy, “The kind of discrimination that's taking place with leprosy patients all over the country is clearly an act of violation of fundamental rights and it shows that our society is still merciless regarding issues related to leprosy, although huge changes have taken place in laws relating to Panchayat and local bodies in almost every state.”
• Lepers Act 1898 was passed to protect society from infection when it was considered highly infectious due to inadequate knowledge and no cure.
• Multi Drug Therapy available in the country from 1983.
• Lepers Act repealed 1985
• Discriminatory provisions exist in various Acts, Laws, Rules, Govt. Orders etc. against leprosy affected persons
Facts and Figures :
Leprosy is one of the least infectious disease which spreads from an untreated infected person to a susceptible person through aerosol droplets from mouth and nose. It is least infectious and has a low virulence or pathogencity. From the studies conducted in various population groups it is known that by adulthood at least 60 percent of the population in an endemic area would be infected, but only a small proportion (less than one percent) may get the signs and symptoms of the disease. The organism is not transmitted by contact and also there is no evidence to say that it is hereditary. Leprosy is associated with involvement of nerves which results in disability as well as physical deformity but early detection of the disease saves the patient from the disability. Leprosy is completely curable with Multi-Drug Therapy (MDT).
• Leprosy is only mildly infectious
• Leprosy is completely curable now
• Only 1% infected people may develop disease due to low immunity against leprosy
• Leprosy is not hereditary
• There is no incurable / virulent form of leprosy
MDT was introduced in India in the year 1983 and National Leprosy Eradication Programme (NLEP) was also launched in the same year with the overall objective of achieving elimination of the disease. To a great extent, it was achieved in 2005 when the leprosy cases had come down below 1 per 10,000. Despite this achievement, over a lakh new cases are reported every year. It is claimed that first dose of MDT drugs kills 99.9 percent of leprosy bacteria. MDT cures the disease in the six months (pauci-bacillary leprosy) and twelve months (multi-bacillary leprosy)
As the nation celebrates the birthday of Mahatma Gandhi, let us pledge to accomplish the unfinished task of the father of the nation by integrating the leprosy patients into the mainstream of our society.
(The writer is a Health Communication Expert)