India: New project fights stigma of leprosy

Kalpana Yadav now

Kalpana Yadav was forced to leave her home in order to protect her younger sibling's marriage prospects. If people knew she had leprosy no one would marry her sister. Such is the stigma attached to the disease, in India, where more than half the new cases of leprosy are diagnosed annually - 125,785 of the 213, 899 new cases world-wide in 2014 (WHO statistics).

Now a project, known as CREATE, funded by a €1.3m (£925,000) European Union grant, will tackle the stigma of leprosy and disability, which is a major obstacle in the fight to eliminate the disease.

Gareth Shrubsole, Programmes Officer for The Leprosy Mission England and Wales is co-ordinating this three-year scheme which will be launched in south India, later this month.

He said: "The stigma of leprosy ruins people's lives. The myths and fears are so strong that often people will hide their symptoms from their own family for fear of being ostracised. Sadly, if left untreated it leads to deformities."

Leprosy, also known as Hansen's disease, is caused by Myobacterium Leprae. It occurs commonly in people living in extreme poverty, especially in areas without good water and sanitation.

It is easily curable with multidrug therapy - a combination of rifampicin, clofazimine and dapsone tablets. Yet people with leprosy are often cast out by
communities and employers routinely turn away job seekers even if they have been cured of leprosy.

That leprosy is both the result of past sins and a curse, are among the commonly held myths which feed the discrimination and stigma. Some three million people around the world are currently disabled as a result of late treatment. Leprosy affects the nerves in the outer extremities and if left untreated it leaves fingers and toes without sensation. It means that people affected are not aware when they burn or injure their hands or feet.

From the end of January, staff from our two partners, The Leprosy Mission Trust India and Brighter Futures will start mobilising small, community-based
organisations (CSOs) in four Indian States - Uttar Pradesh, Chhattisgarh, Andhra Pradesh and Tamil Nadu. These groups will collaborate with municipalities (local governments) and mainstream CSOs on joint campaigns to address various forms of stigma and injustice.

CREATE - (CSOs for Resource mobilisation , Empowerment, Advocacy, Training & Employment)- teams will then target 900 municipalities (local government bodies) and 200 employers in 18 districts to raise awareness about a range of issues affecting people with leprosy and disabilities including adopting fair employment practices.

Over the next three years, 3,000 men and women will be given vocational training to find work as computer operators, electricians, tailors, diesel mechanics and other trades, or to start their own small businesses. They will also be made aware of their rights and how to claim them.

Academic research into how stigma can be tackled will run alongside other efforts, in partnership with expert researchers from the University of Leeds.

Gareth said: "The EU funding will help us and other local partners to deliver real and lasting change for people living with leprosy and disability in India.
"This combination of rights awareness, vocational skills training and working with local governments and employers, will help thousands of people affected by leprosy and disability to challenge injustice and build a better future for themselves and their children."

Kalpana was among the lucky ones. She found refuge in a leprosy colony in Allahabad, where she was given shelter and treatment. She was cured, but as treatment came late, she has been left with a clawed hand and deformed feet. She has managed to build a life for herself with the charity's support. She is now married and runs a stall selling bangles and tea from a little wooden hut on the banks of the river Ganges.

"I still feel the pain of being forced to leave my home, like it was yesterday," she said. "I think of my family every day. But life is good now."

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For more information on The Leprosy Mission England and Wales see: www.leprosymission.org.uk