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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Empowerment in Action

The Goodwill Ambassador visits India - twice - as well Sri Lanka and Timor-Leste.

SILF board meeting in New Delhi on April 10
SILF board meeting in New Delhi on April 10

INDIA (April 9-14, May 9-11)

In April and May I visited India twice, on both occasions traveling to Bihar State. As it turned out, these visits yielded significant results, as I shall relate below. But my first item of business was in New Delhi, where I attended the board meeting of the Sasakawa-India Leprosy Foundation on April 10.

Established in 2007 with an endowment of US$10 million, SILF provides micro-credit loans to individuals and groups in India's self-settled leprosy colonies. With these loans, residents are able to start or expand their businesses. To date, SILF has supported 59 projects, approving loans totaling over 10 million rupees.

Expectations among colony residents are so high that it is not possible to act on every loan request. To meet this need, it will be necessary to solicit donations within India and increase the size of the SILF endowment, which generates the interest that finances the loan program. SILF has formed a fundraising committee which will start work soon.

The next evening I flew to Patna, capital of Bihar State. Home to some 100 million people, Bihar has a bigger population than many countries. During the year from 1 April 2009 to 31 March 2010 there were 21,431 cases of leprosy detected in the state. The prevalence rate at the end of March was 1.08 per 10,000 population. Of its 38 districts, just 10 have a prevalence rate of less than 1. There is much unfinished leprosy business in Bihar, yet at the time of my visit, the position of state leprosy officer was vacant.

During my stay, I had several meetings with top officials to discuss the problems of people affected by leprosy in the state - one of India's poorest. Beforehand, however, I went to see situation on the ground for myself.

I visited three colonies in East Champaran District, about a two-hour drive from Patna. My guides included members of Bihar Kashta Kalyan Mahasangh (BKKM), an umbrella group of associations of people affected by leprosy in Bihar, and representatives of the National Forum of people affected by leprosy. The three colonies I visited were Motipur, Chakia and Pipra. The latter was the scene of a tragedy earlier this year when a young boy died in an arson attack related to a land dispute.

The colonies contend with a range of issues. Motipur lacks toilets, has homes that leak in the monsoon season and suffers from the nonpayment of pensions to which some residents are entitled. At Chakia, residents' homes are under threat as the road they live alongside is to be widened. Generally speaking, the colonies lack basic amenities; job opportunities are few and many residents must beg to make ends meet.

I also took the opportunity to visit the Lalganji Primary Health Center in Vaishali District. The health center serves a population of 320,000 and sees around 200 outpatients a day. In April, there were no new cases of leprosy registered. Currently, 22 people are receiving multidrug therapy. I was told that some people with leprosy prefer to go to Patna for treatment to keep their condition a secret from their neighbors.

On April 13, accompanied by BKKM president Kamlesh Divyarshi, I called on State Health Minister Nand Kishore Yadav. I requested that he find a good candidate to fill the vacant leprosy program officer's position, and also that he take steps to improve conditions for people living in colonies.

The minister said he would think about creating a category of disability pension that would cover people affected by leprosy. He also said he would consider giving priority to persons affected by leprosy under schemes for the welfare of those sections of society living below the poverty line.

Next I met with Sanjay Kumar, the executive director of the National Rural Health Mission (NRHM). Mr. Kumar is a no-nonsense figure who radiates authority. He said that if he was given the base-line data, he would quickly deal with the issue of pensions and living conditions.

This was an opportunity not to be lost. Leaders of the National Forum met with representatives of Bihar's leprosy communities and agreed to compile a list of names of affected persons and their circumstances and present it two weeks' later. I agreed to return and accompany them when they handed over their fact-finding report.

Early in May, receiving word that the survey had been completed, I traveled back to Bihar from Sri Lanka, where I had been visiting. Sitting down with BKKM's Ram Barai Sah, Braj Kishor Prasad and Kamlesh Divyadarshi the night before we were due to present the findings, I marveled at their achievement. In just 15 days, they visited 997 households in 63 colonies in Bihar and found out all they needed to know about land ownership, living circumstances, and whether the householders were receiving pensions. It was a remarkable effort.