More than half of new cases of leprosy each year are diagnosed in India (latest statistics published by the World Health Organisation for 2013 reveal a total of 126,913 out of 215,557 new cases) with stigma surrounding leprosy causing those affected to be regularly thrown out of their homes, communities, jobs and schools.

Leprosy is a mildly-infectious and treatable disease but if left untreated, can cause severe disabilities and blindness.  This fuels much fear among communities in India and the proliferation of various untruths such as leprosy is a curse for something a person has done in a previous life.  A recent survey conducted in Delhi revealed that 95 per cent of people still believe there is no treatment for leprosy despite multidrug therapy (MDT) providing an effective cure since 1982.

The injustice of the treatment of people affected by leprosy prompted The Leprosy Mission England and Wales to apply for overseas aid funding from the Department for International Development (DfID) to launch a Challenging Anti-Leprosy Legislation (CALL) project implemented by its colleagues at The Leprosy Mission Trust India from 2010 to 2015.

Staff from The Leprosy Mission met with Mr Justice Ajit Prakash Shah, Chairman of the Law Commission of India, whose draft legislation was today submitted to the Minister for Law and Justice at the Indian government.

The draft legislation includes repealing or amending Indian laws, which continue to directly and indirectly discriminate against people affected by leprosy.  The reason The Leprosy Mission’s CALL project was originally established was to repeal seven current laws that directly discriminate against people affected by leprosy, including leprosy being grounds for divorce.

It also campaigned for better awareness surrounding eight laws that indirectly discriminate against people affected by leprosy including the Indian Railways Act 1989 which gives power to authorities to carry people suffering from infectious disease.

Lack of awareness on the part of the Indian railway authorities often sees people affected by leprosy thrown off trains once a conductor clocks their leprosy-caused disability despite being treated for the disease decades ago.

In 2010, the United Nations General Assembly unanimously adopted a Resolution on the Elimination of Discrimination against Persons affected by Leprosy, accompanied by Principles and Guidelines listing out measures to improve the living conditions of such persons. Additionally, the United Nations Convention on the Rights of Persons with Disabilities, 2007 (“UNCRPD”) promotes, protects and ensures the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities.

India has signed and ratified the UNCRPD, and is also a member of the UN General Assembly that unanimously passed the Resolution on the Elimination of Leprosy.  The Indian government, however, has taken no action to modify or repeal any leprosy laws, or to eliminate discrimination against persons affected by leprosy.

Draft legislation submitted to the Indian government today by the Law Commission of India includes:

1.      Repeal and amendment of certain laws

2.      Measures against discrimination: The Law Commission of India recommends that people affected by leprosy and their family members must not be discriminated against in any institution. It also guarantees to such persons the right to access healthcare, adequate housing, education, employment and other such basic amenities.

3.      Land Rights: Persons affected by leprosy are often made to relocate to ‘leprosy colonies’.  There are 850 such colonies in India.  They currently do not have land rights, however, and live in fear of being evicted from the land.  The Law Commission of India recommends that title and ownership of property in leprosy colonies should be legalised, and if land rights cannot be given, alternative settlement options must be explored.

4.      Right to Employment: Many employers misuse existing employment laws to terminate the services of people diagnosed with leprosy. The draft law prohibits the termination of employment of such persons solely due to their association with leprosy.

5.      Educational and training opportunities: The Law Commission of India recommends that the draft law should ensure the admission of people affected by leprosy and their family members in schools, colleges and other institutes.

6.      Appropriate use of language: The use of the term ‘leper’ and similar terms carries negative connotation and are stigmatising towards people affected by leprosy.  The Law Commission of India recommends that the term ‘leper’ and other such terms in all government and private documents should be replaced with ‘persons affected by leprosy’ or a similar term.

7.      Right to Freedom of Movement: The draft law ensures that persons affected by leprosy are guaranteed the right of travel in public transport and the right to obtain a driving licence.

8.      Concessions during treatment: The draft law seeks to provide relevant concessions and monetary benefits to persons affected by leprosy who are undergoing treatment, for their travel, lodging during treatment and

9.      Social Awareness:  Creating awareness regarding the cure and transmission of Leprosy is the best way to address the discrimination and stigma against persons affected by leprosy and their family. The Law Commission of India recommends that awareness about the disease, its treatment and curability should be conducted through campaigns and programmes in schools, hospitals, government institutions and private establishments.

10.  Welfare Measures: The draft law imposes specific duties upon establishments to execute certain welfare measures to foster an environment for financial and social growth of persons affected by leprosy and their families. It also creates central and state commissions to strictly enforce such measures, and provides for accountability measures in case of non-enforcement.

Head of Programmes Coordination at The Leprosy Mission England and Wales, Sian Arulanantham, said:  “We were overwhelmed to see the Law Commission of India’s draft legislation. They have taken all the issues the CALL project has worked so hard to address and turned it into legislation that would result in a fair society for people affected by leprosy.  

“Six years ago I was working on the development of this project and, if this draft legislation is taken on board by the Indian government, it is more than we could have ever possibly dreamed of.

“There are millions of people affected by leprosy in India who have suffered terrible injustices and discrimination as a result of ignorance and breaches of human rights.  This draft legislation would protect them and see the stigma surrounding leprosy slowly but surely disappear.

“It would also mean that The Leprosy Mission England and Wales can direct more of its resources to other countries in Asia and Africa as the Indian government would take responsibility for services such as reconstructive surgery for leprosy

“I congratulate the Department for International Development for investing in this most valuable and life-changing project and for the tenacity and steadfastness of our colleagues in India.”

For the Law Commission of India’s full report please click here.

Photo: Ruth Towell/The Leprosy Mission