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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: 9 Days in India

Dharamsala, Delhi and Bhopal were on the Goodwill Ambassador's itinerary when he visited India recently. He also welcomed another visitor to Japan.

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View of Dharamsala

INDIA (August 25-September 2)

In late August I traveled via New Delhi to Dharamsala in the north of India to meet with His Holiness the Dalai Lama. It was an inspiring meeting that I recount elsewhere in this issue (see page 3).

During my stay in Dharamsala, I called at the Palampur Leprosy Home and Hospital. Founded by Christian missionaries in 1917, it has 17 residents. A number of them followed the Dalai Lama from Tibet. It is in a beautiful setting. "We have a good life here," one elderly man told me. "There is no discrimination."

Returning to New Delhi, I had a meeting with leaders of the National Forum India (NFI), the nationwide forum of people affected by leprosy that I helped to establish in 2005. Since our last meeting, there had been a change at the top. Dr. P.K. Gopal, the founder and chairman of the forum, is now senior consultant.

The new chairman is Vagavathali Narsappa, the former president of the Society of Leprosy Affected Persons in Andhra Pradesh. Mr. Narsappa told me he intends to make full use of the experience he has gained at the grassroots.

Together we called on Union Health Secretary P.K. Pradan and the WHO's regional director for Southeast Asia, Dr. Samlee Plianbangchang. I also had a meeting with the Sasakawa-India Leprosy Foundation (SILF) as well as a number of media interviews before we flew to the state of Madhya Pradesh on August 30.

In 2011, Madhya Pradesh recorded 5,858 new cases of leprosy out of 127,295 cases for India as a whole. The leprosy prevalence rate in the state is 0.63 per 10,000 people.

My mission was to learn about the situation on the ground and seek a commitment from political leaders to improve living conditions of people affected by leprosy, including the provision of a bigger pension.

At the time of my visit, people affected by leprosy living in colonies were receiving a pension of just Rs. 150 per month. The average in other states is around Rs. 500 rupees; in Delhi it is as high as Rs. 1,800.

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Alongside Mr. Sarang Gaydhane following the meeting with Madhya Pradesh's chief minister

Together with NFI Chairman Narsappa, NFI Trustee and State Leader Sarang Gaydhane and members of the Madhya Pradesh Leprosy State Leader Committee, I called on Chief Minister with Shivraj Singh Chouhan. Mr. Gaydhane presented the chief minister a letter requesting the government to improve conditions of leprosy colonies along with a survey report on colonies in the state. While health department records show only 10 colonies, Mr. Gaydhane's report lists 34 leprosy colonies in 17 districts that are home to 3,761 people.

I told the chief minister about developments on the pension front elsewhere in India. I cited the example of Bihar, which has agreed to raise the monthly pension for people affected by leprosy from Rs. 200 to Rs. 1,800. I requested that he look into the possibility of raising the pension in his state, too.

On the spot, the chief minister promised to increase the pension to Rs. 1,000 and said he would respond appropriately to Mr. Gaydhane's other requests, including the building of sub-health centers and improvements to colony housing.

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Mr. Narsappa chats with Dr. Plianbangchang

Afterward, following a meeting with Justice A.K. Saxena, the acting chairman of the state human rights commission, I held a press conference attended by some 30 journalists. I announced that the chief minister had promised to increase the pension and this was widely reported the next day.

To make the pension increase a reality, there is a process to be followed and more negotiations will be required. I will do what I can to support Mr. Gaydhane and his team to realize this outcome.

On August 31 I traveled three hours by road from the state capital Bhopal to the town of Indore. En route I stopped at Magaspur colony to visit a dairy farming project financed by a loan from SILF. The enterprise produces around 20 liters of milk a day, which is sold wholesale to the government and other entities. The group of four people involved receives a monthly income of approximately Rs. 18,000. They told me this enabled them to have a good quality of life and that they were very happy.

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All smiles: nursing student Kalavati Wasuniya

Next I visited Ram Avtar colony in Alwasa. SILF has financed agricultural projects that employ 30 people on land loaned by the government. I also met a young woman who is training to be a nurse with a scholarship from SILF.

Finally I reached Mr. Gaydhane's colony in Indore, where I took part in an assembly of about 100 residents. Children greeted me with a song and I met students who have received scholarships from LEPRA for higher education. I could feel the positive energy the colony residents radiated. They have a good leader in Mr. Gaydhane and I applaud his efforts to improve the lives of people affected by leprosy throughout his state.

JAPAN (September 11)

Recently I had the opportunity to meet with Mr. Jan van Berkel, the director of Netherlands Leprosy Relief (NLR), when he visited Tokyo in September. We talked about the current state of leprosy control, the challenges that remain and the importance of working together to achieve our common goal of a world without leprosy and its consequences.

Mr. van Berkel told me that NLR is focused not only on disease control, including diagnosing the disease before disability sets in, but also on rehabilitation in all its aspects, and social inclusion. "Every person we can prevent from suffering from disability, from stigma and from isolation represents a life gained," he said.

Based in the Netherlands, NLR relies primarily on Dutch citizens donating small amounts of money for its funding. But with Europe going through a difficult time economically, NLR is looking at the possibility of raising funds locally in some of the countries where it has offices, such as India and Indonesia. As well as easing the pressure on NLR's budget, Mr. van Berkel said, "I think that developing fund-raising programs in these countries may contribute to a civic commitment to these issues from their citizens."

Another topic that came up was chemoprohylaxis. NLR research has shown that the number of cases of leprosy among contacts of confirmed cases was reduced by half after two years, compared to a control group, if they were given a dose of rifampicin. Now NLR is experimenting to see if chemoprophylaxis can be rolled out on a large scale in one place, with the same effect. If the results of this pilot study in Madura, a leprosy-endemic island in Java, are successful, NLR would like to see chemoprophylaxis rolled out in every leprosy-endemic area.

I appreciated Mr. van Berkel's visit and shall be following NLR's activities with interest.