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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Back to India

Board meetings in Delhi, lobbying for pensions in Bihar.

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Jitwarpur colony in Samstipur, Bihar state.

INDIA (February 26 – March 3)

India's National Forum of people affected by leprosy is an umbrella organization that represents residents of self-settled leprosy colonies all over India. Founded at my suggestion in 2005, it was officially registered as a trust with the Indian government on February 21 this year*. This is a very important development for improving the lives of colony residents and promoting their social integration.

The aim is to extend the concept of disability to social disability.

For five years, the National Forum has been engaged in building and strengthening its nationwide network. It has held national and regional meetings and conducted a survey of colonies. On February 26, the first meeting of the newly constituted board of trustees was held in New Delhi at the offices of the Sasakawa-India Leprosy Foundation (SILF). Nine trustees, all persons affected by leprosy, took part. Dr. P.K. Gopal was elected chairman of the board and I was honored to be made patron.

In being recognized by the government as a trusted partner in negotiations on matters related to colony residents, the National Forum will, I believe, play a very important role in advancing social reintegration for all persons affected by leprosy in India. In that regard, I stressed the importance of the principles and guidelines that were part of the resolution adopted by the UN General Assembly in December 2010, and urged the board to make full use of them in its activities.

In the evening I flew to Bihar state. This was to follow up on two visits I made in short succession a year earlier. Then, together with National Forum leaders and representatives of Bihar Kushta Kalyan Mahasangh (BKKM), an organization of people affected by leprosy in the state, I had called on Bihar's deputy chief minister and other officials to lobby for pensions for people affected by leprosy. While the authorities responded positively, especially after receiving the baseline data they had requested, subsequent state elections meant the process had to begin afresh.

What the National Forum and BKKM are seeking is a pension for every person affected by leprosy living in Bihar's 63 self-settled colonies, including those with no visible disabilities. Currently, any affected person who has a recognizable physical disability qualifies for a disability pension, although not all are receiving one. The aim is to extend the concept of disability to social disability, on the grounds that stigma and discrimination are also disablers when it comes making a livelihood. Although an Indian government petition committee has recommended that a pension of 2,000 rupees per month be paid to people affected by the disease, because of economic disparities among states Bihar is requesting 1,000 rupees.

Among the state leaders we met with again to press our case were Sanjay Kumar, the National Rural Health Mission's executive director for Bihar, and Bihar's Deputy Chief Minister Sushil Kumar Modi. We also met with the social welfare minister and the health minister. We were fortunate in that Deputy Chief Minister Modi now also doubles as the finance minister, and so has influence over budgetary decisions. From what he said, I am now more confident than ever that the pension will be forthcoming. My hope is that once the issue is settled in Bihar, the state will become a model for others to follow.

While in Bihar, I called on the offices of LEPRA India, where its state coordinator, Rajin Kant Singh, gave me a presentation on LEPRA's activities there. LEPRA operates in nine districts designated by the government.

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LEPRA India activities: prevention of disabilities camp

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specialized footwear

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self-care kit

I learned that Bihar sees around 20,000 new cases of leprosy a year. The rate of new cases with grade 2 disability is low, which indicates that people are coming in early for treatment. On the other hand, the 16-17% of new cases involving children shows that there is a high rate of infection in the community.

Mr. Singh told me that LEPRA is the only organization in Bihar preparing specialized footwear for people affected by leprosy. I was very impressed by the samples. "No one can tell these are shoes for people affected by leprosy," he told me. I was particularly intrigued by a foot support to be used inside the house, where shoes are not worn.

Design and supply of protective footwear is one part of LEPRA's integrated prevention of disability (IPoD) activities, which also include skin care, wound care, exercise, and health education. Afterward, I visited a government health center at Taipur where LEPRA conducts an IPoD camp twice a month. On the expansive roof balcony, I helped out as people cleaned their feet. I was also introduced to a number of patients under treatment and shown the different ways the disease can manifest itself.

My stay in Bihar included a visit to the Jitwarpur leprosy colony in Samstipur. Its residents had once lived alongside the nearby railroad tracks; now they had been given land to one side of a road. As well as people affected by leprosy, there are also persons with disabilities and other of society's poorer members living there. Conditions were very basic and it brought home to me the extent of the challenges that remain to improve the lives of people in these colonies.

This is one of the goals of the Sasakawa-India Leprosy Foundation. On returning to Delhi, I attended the SILF board meeting on March 2. The primary objectives of SILF are to assist people affected by leprosy through their own self-help efforts to lead independent lives, and to address the problems of stigma and discrimination.

Five years after SILF was established, it is starting to have an impact through its sustainable livelihood initiatives, designed to facilitate a move away from begging. In 2009-2010, SILF extended its reach to 430 beneficiaries living in 33 colonies across 11 states. But the provision of seed money alone to start income earning activities among peoples with low levels of education and skills is often not enough, so SILF also focuses on skills' training and capacity building.

SILF has had some success, notably the projects it recognized with its Rising to Dignity awards in January, but it has also had some failures, when projects didn't get off the ground. However, as I told the board meeting, failures are more important than successes, because of the lessons they can teach.

I am particularly pleased by the growing cooperation between SILF and the National Forum. The latter's nationwide network is crucial for the effective implementation and monitoring of SILF's projects, as well as the dissemination of information regarding other initiatives. I expect much from this collaboration in the months and years ahead.

While in Delhi I also paid a courtesy call on the offices of Netherlands Leprosy Relief India, where I was warmly welcomed by Dr. M.A. Arif and his team. In addition, I had my first meeting with the new WHO country representative, Dr. Nata Menabde. We agreed on the need to encourage the Indian government to remain focused on leprosy. I look forward to cooperating with her on seeing that our shared objective is realized.

FOOTNOTE

*The trust deed was registered in Tamil Nadu State as a Public Charitable Trust, in conformity with the provisions of the India Trust Act, 1882.