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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: In Delhi with the Dalai Lama

The Goodwill Ambassador makes a memorable visit to India and returns to Nepal for the first time since 2010.

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A day to remember: sharing a stage with the Dalai Lama at Kasturba Gram

INDIA (March 18-21)

This was my 50th visit to India, the country that holds the key to reducing the overall burden of leprosy in the world. It was appropriate, therefore, that it should be marked by a very special occasion: the visit by His Holiness the 14th Dalai Lama to a leprosy colony in New Delhi.

The origins of the visit go back to an audience I had with the Dalai Lama at his headquarters in Dharamsala, northern India, in August 2012. During our conversation, I invited him to accompany me to a leprosy colony one day. He readily agreed and I was delighted when he was eventually able to find time in his busy schedule.

Tahirpur in northeast Delhi is a complex of 27 leprosy colonies. Kasturba Gram Colony was selected as the venue for the Dalai Lama’s visit on March 20. Some 500 people had gathered to see him and they were not disappointed.

His Holiness’s message was unequivocal: “Seven billion human beings are all equal,” he said. "People should not look down on others. It is totally wrong. Discrimination is a sin.” These words were all the more powerful coming from the Dalai Lama, whose actions in shaking hands with and hugging members of his audience spoke volumes.

Among those present were leaders of the Association of People Affected by Leprosy (APAL), the nationwide network that connects India’s 850 self-settled leprosy colonies. Later in the day I attended an APAL meeting, when representatives from 13 states reported on the progress they are making in gaining special pensions for people affected by leprosy. I was pleased to hear of instances where my previous visits to their states had helped to move negotiations forward and said I was prepared to visit as many times as needed to help the colony leaders achieve their goals.

Also attending the APAL meeting was Javed Abidi, the chairperson of Disabled People’s International. I believe leprosy groups can learn much from disability leaders and I appreciate Mr. Abidi’s efforts to raise the profile of leprosy within the disability movement.

While in New Delhi I called on India’s new health secretary, Lov Verma, who was appointed in February. India accounts for over half of all new cases of leprosy in the world and recently decided to increase its budget for leprosy control. I look forward to cooperating closely with the health secretary and his colleagues in doing what I can to help India address the remaining challenges.

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Meeting with self-help group members and health volunteers at Sainguan Village in Nepal’s Banke District.

NEPAL (March 21-25)

It had been four years since my last visit to Nepal, when I had attended a ceremony in 2010 to mark the country’s attainment of the WHO’s leprosy elimination target of a disease prevalence rate of below one case per 10,000 population.

Nepal continues to report around 3,500 new cases of leprosy each year. These are mostly found in the Terai plain in the south of the country, bordering India. It is no exaggeration to say that the effectiveness of Nepal’s leprosy control program depends on the early detection and treatment of new cases in the Terai.

To reacquaint myself with the situation there, I flew from Kathmandu to Nepalgunj in Banke District in Nepal’s Midwestern Development Region. Accompanying me was Chudamani Bhandari, director of the health ministry’s Leprosy Control Division.

Our first stop was at Saingaun village to meet with a community of people affected by leprosy. This village of some 6,000 inhabitants consists of many low-caste, impoverished people. They include around 50 people affected by leprosy, together with their families.

Twenty-five people affected have formed a self-help group, led by 32-year-old Sahabir Ali Sain. They have started businesses with microloans they have received from the government.

I met with members of the self-help group as well as 18 Female Community Health Volunteers (FCHVs) in a small assembly hall. These volunteers are responsible for everything from maternal and child health to detecting communicable diseases. They perform a vital role in areas where government health services don’t always reach.

Next I traveled about two hours by road to neighboring Bardiya District, where I visited another community of people affected by leprosy living in Taratal village. The community is supported by International Nepal Fellowship (INF), an NGO established in 1952. At the time of my visit, 63 persons were under treatment with multidrug therapy.

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Prem Kala Dangi

In Taratal I met a community health volunteer who greatly impressed me. A person affected by leprosy, Prem Kala Dangi brimmed with self-confidence and purpose.

The following day, I went to see an INF-run clinic. It was established in 1960 with support from the German Leprosy and TB Relief Association. It serves as a leprosy treatment center for the Midwestern Development Region but also sees its share of patients from the neighboring Indian state of Uttar Pradesh. I also visited the government-run Bheri Zonal Hospital and met with personnel from the Banke District health authority, local NGOs and volunteers. Around 10 local media covered the event.

Returning to Kathmandu, I traveled to Nepal’s only leprosy sanatorium. Khokana was established as a national sanatorium in 1857 by the king. Today, around 100 people affected by leprosy and their families live there. As Mr. Bhandari showed me around, I was interested to hear him say he wished to preserve some of the older buildings as a museum of leprosy history.

Afterward I attended a joint meeting with health ministry representatives, WHO officials, people affected by leprosy and NGOs. Health Secretary Dr. Praveen Mishra showed his commitment to leprosy control with a passionate speech.

People’s organizations from all over the country had gathered. I was struck by the fact that some 30 percent of their leaders were women, such as Parwati Oli of IDEA Nepal. In India, the majority their counterparts tend to be men.

Also attending this gathering were representatives of disability groups. I understand there is growing participation by people affected by leprosy in the disability movement in Nepal and I welcome this development.

Before leaving Kathmandu I paid courtesy calls on both President Ram Baran Yadev and Prime Minister Sushil Koirala. Keeping a country focused on leprosy requires cooperation from people at every strata of society, from heads of state to the grassroots. Nepal still has much to do, and I hope it will not waver in its efforts to tackle the disease.