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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Pushing for Progress

The Goodwill Ambassador returns to India to attend another leprosy stakeholders’ meeting, this time in the high-burden state of Uttar Pradesh.

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The stakeholders’ meeting in Uttar Pradesh

INDIA (October 21-24)

Uttar Pradesh is India’s most populous state. Home to some 200 million people, it is bigger than many countries. In the nation that reports the most new cases of leprosy in the world, Uttar Pradesh is the state that contributes the highest number — over 24,000 in the year through March 2013.

I traveled to Uttar Pradesh in October with three main objectives. First, to build political commitment for strengthening leprosy control measures. Second, to accompany leaders of people affected by leprosy in discussions with state officials over their petition for a pension and other living improvements. And third, to see projects funded by the Sasakawa-India Leprosy Foundation that promote the economic self-reliance of people living in leprosy colonies.

Under India’s system of federal government, state governments have the main responsibility for implementing measures against leprosy at the field level. The commitment of states to this task is thus essential.

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Principal Secretary Kumar

Bolstering that commitment was the purpose of the leprosy stakeholders’ meeting I attended in Lucknow on further reducing the burden of leprosy in Uttar Pradesh. Among those taking part were state health officials, the state leprosy officer, district leprosy officers from 37 high-endemic districts, NGO representatives and people affected by leprosy.

The meeting was chaired by Pravir Kumar, principal secretary of health of Uttar Pradesh, who said: “It is most important that we detect cases as early as possible and start treatment immediately cases are reported. In this, the ministry has very important role.” He went on: “One of the reasons why cases are not detected or reported is because of the social stigma attached to the disease. We need to remove such fears from people’s minds.”

I was gratified to see over 10 local media organizations were covering the meeting.

That is a message that everyone needs to hear, so I was gratified to see there were more than 10 local media organizations covering the meeting. Generating greater public awareness and understanding of leprosy is a key part of tackling the disease and encourages people to come forward for treatment.

The next day, I travelled about 80 kilometers south of Lucknow to Raebareli district, where I visited Jay Durga leprosy colony. Established in 1971, it is home to 40 adults and 31 children.

Jay Durga has several livelihood projects made possible by grants from the Sasakawa-India Leprosy Foundation (SILF). SILF currently supports around 150 livelihood projects in 16 states. The projects at Jay Durga include goat rearing and cycle rickshaws, and benefit 13 people in total.

Members of the SILF livelihood team told me that the success of a project depends on several factors: developing the decision-making capabilities of project members; making use of members’ know-how and experience; the existence of a ready market; and the enterprise being attractive enough for the next generation to want to continue it.

Although SILF’s successes are still modest in number, the list is growing. As I found in Uttar Pradesh, it is very encouraging to see people who used to rely on begging now running their own enterprises. It gives them confidence and lifts the mood of the community as a whole.

While at Jay Durga I attended a meeting of colony leaders from a dozen of Uttar Pradesh’s 68 leprosy colonies. They are all members of the Leprosy Sufferers Welfare Association, a state-wide organization run by Dayalu Prasad and Murari Sinha, the leader and secretary, respectively.

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Addressing the colony leaders’ meeting at Jay Durga colony

In December 2012, the association submitted a petition to the Chief Minister seeking improvements in living conditions. The petition contained five requests: 1) a monthly pension of Rs. 2000 for people affected by leprosy; 2) provision of government low-income housing to residents of leprosy colonies; 3) improvements in water, electricity supply and basic sanitation; 4) opportunities for children of people affected by leprosy to receive higher education; and 5) the provision of free medical kits to each colony.

Receiving no reply, the association secretary Mr. Murari resubmitted the petition in September. This time he did so through the media, believing this to be the best way to get the petition noticed. He also delivered copies to all the relevant government agencies. It was to follow up on these efforts that I returned to Lucknow for more meetings.

With Mr. Murari and others, I called on Anil Kumar Sagar, the director of social welfare, requesting his assistance. The following morning, we met with Sunil Kumar, the principal secretary and the key person at the social welfare department. He said it was the first time he had been petitioned about leprosy.

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Murari Sinha hands the petition to Sunil Kumar.

Concerning the pension request, he wanted information on how many people would be eligible and what the situation was in other states. Regarding education, he said the government had a scholarship fund for children of low-income households and recommended that people affected by leprosy apply for this.

The same day I also paid courtesy calls on Governor B.L. Joshi and Health Minister Ahmet Hassan, at which we discussed the petition. My final words before leaving Lucknow were reserved for the Leprosy Sufferers Welfare Association. To move matters forward, I said, they must supply the state government with all the information it had requested.

Less than one week after returning to Tokyo, I received word from Uttar Pradesh. Mr. Murari forwarded a document from Principal Secretary Kumar. It was an instruction to the social welfare officer in each district, attached to which was a list of children of people affected by leprosy that Mr. Murari had supplied. The note read in part: “You are requested to undertake the survey of the listed students. You are further requested to provide them all possible support and take necessary actions to provide secondary and higher secondary scholarships.” This is the first time I have seen a state government respond so swiftly.

As I told the colony leaders who had gathered at Jay Durga colony, the power to solve the problems they face lies in their hands. This is true not just in Uttar Pradesh but all over India, led by the activities of the newly renamed Association of People Affected by Leprosy (formerly National Forum India — see page 8). I see my role as lending a hand when needed.

As discussions over a pension in Uttar Pradesh continue, I was very pleased to learn of the recent success of people affected by leprosy in Bihar in securing a monthly livelihood allowance of Rs. 1,800 from the state. I congratulate them on this wonderful news. I trust that before long I will be saying this to my friends in Uttar Pradesh, too.