The biggest hurdle to eliminating leprosy in India is the stigma and discrimination - which continues long after a person has been cured.

The 1898 Lepers Act, introduced during the British Raj – when there was no cure for leprosy and people were banished to colonies far from cities and towns to stop its spread - perpetuated the historical discrimination against those affected.

India’s Ministry of Law and Justice has now announced it is ‘Repealing and Amending Act 2016’, which includes a host of obsolete legislation including the Lepers Act 1898.

The repeal of the Act is a small but positive step in the right direction. Yet judges and charities say India still has a long way to go to address the many myths surrounding the disease that stops sufferers from seeking treatment, for fear of being cast out by their communities.

Chairman of the Law Commission of India Justice Ajit Prakash Shah welcomed the move but said it fell far short of the measures needed to improve the plight of leprosy-affected people.

He said: “The repeal of the Act is a very positive step, but relatively insignificant from the point of view of addressing the situation of those who are affected by the disease in India.”

The retired High Court Judge is one of the authors of Reports 248-251 which called for the repeal of discriminatory laws and Report 256 which advocated several new measures to end the discrimination.

He said:  “There are two points to note here. Firstly, the repeal of this Act is further to the Law Commission's recommendations on repealing certain obsolete laws, which was contained in our Reports 248-251.

“Secondly, the Law Commission had separately issued Report No.256 on Eliminating Discrimination Against Persons Affected by Leprosy (EDPAL), which discussed the repeal or amendment of several other laws that adversely affect leprosy-affected persons.

“The Government of India is yet to take any action on it.  Until that is done, this specific repeal of a single law is not going to be of much significance.”

Report No 256, which contained the EDPAL Bill, was drawn up in conjunction with The Leprosy Mission (TLM) and was submitted to the Indian Parliament in September last year. The measures it recommended for improving the lives of those affected by the disease included:

• raise awareness of leprosy, its treatment and curability through campaigns
• provide access to education and employment
• enable access to benefits
• and give land rights – many live in the 750 clusters called leprosy colonies built on Government land with no option to have legal ownership of the homes they’ve lived in most of their lives

The Leprosy Mission Trust India has also launched a petition to garner support for the EDPAL Bill to be made law.

Sian Arulanantham is The Leprosy Mission England and Wales’ Head of Programmes overseeing the organisation’s work in India. She said: “Our biggest challenge is the stigma that stops people from seeking treatment and exercising their rights as citizens of India.

“While there are laws that legally permit people to treat those affected by leprosy as less than humans, tackling the disease will be harder. So addressing the recommendations in Report 256 and making the EDPAL Bill law are crucial. We also need to ensure the human rights of those affected by the disease.

“We are, of course, pleased the Government of India has repealed the 1898 Act. Having taken the first step we are hopeful the rest will follow and the Law Commission’s recommendations will be put before parliament without delay.”

Mrs Arulanantham pointed out that were also other legal hurdles to overcome, such as the religious marriage bills that allow discrimination.

The newly-introduced Sikh Marriages Bill, 2016, that is currently going through Parliament, allows the dissolution of marriage when a spouse is suffering from ‘a virulent and incurable form of leprosy’.

Leprosy has been easily curable since 1982 when multidrug therapy was introduced  – a combination of three antibiotics clofazimine, rifampicine and dapsone.

Yet globally 213,899 new cases were diagnosed in 2014 (WHO statistics) -  125,785 (58%) of those were in India.

Photo: Ruth Towell/The Leprosy Mission