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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Empowerment in Action

In just 15 days, they visited 997 households in 63 colonies in Bihar.

A resident of Chakia colony, one of 63 selfsettled leprosy colonies in Bihar State that were surveyed earlier this year.
A resident of Chakia colony, one of 63 selfsettled leprosy colonies in Bihar State that were surveyed earlier this year.

The next day, survey in hand, we called on Executive Director Kumar of the NRHM, Health Minister Yadav and Bihar Deputy Chief Minister Sushil Kumar Modi. After Executive Director Kumar had heard us out, he said that he would like to arrange discussions over four or five days between BKKM representatives and the state government. He promised that the issue of land and pensions could be solved in a month or so.

When we met with Minister Yadav, he studied the report with a stern expression. "While existing measures may be able to deal with some of these issues, we will need to outline some new policies to extend assistance to people affected by leprosy. I will discuss this with the appropriate officials," he said. For his part, Deputy Chief Minister Modi also pledged his assistance and undertook to see that the issues were taken up.

Given that state governments wield considerable power in India, I believe it can be more effective to work at the state level than at the national level in order to improve the lives of people affected by leprosy. Therefore, it is important to create opportunities for dialogue between leaders of affected persons and top state officials, of the kind that took place in Bihar this time.

Moreover, it made all the difference that the survey was conducted by people affected by leprosy as they are familiar with the issues and have a good rapport with the people they were surveying. Indeed, their survey showed there were 63 colonies in Bihar, whereas government records listed only 25.

I would like to see similar surveys carried out in other states, with Bihar as the model. In the meantime, I await the outcome of the state officials' deliberations.

The men's ward at Hendala Hospital, outside Colombo
The men's ward at Hendala Hospital, outside Colombo

SRI LANKA (May 2-8)

In early May I made my first visit to Sri Lanka in three years, and my third visit in total. Sri Lanka eliminated leprosy as a public health problem in 1995. It also has an excellent record of reducing the stigma attached to the disease. However, a number of leprosy hotspots remain. Therefore, in my meeting with Health Minister Maithripala Sirisena on May 3, I sought his cooperation in ensuring that the ministry remains focused on leprosy and that it continues to build on the very good work that Sri Lanka has already done (see Report on pp. 2-3).

After a briefing from Dr. Tilaka Liyanage, who heads the ministry's leprosy program, I visited Hendala Hospital, a leprosy hospital about 10 kilometers north of the capital, Colombo. The hospital was founded by the Dutch over 300 years ago, and on my tour of the premises I was shown a foundation stone inscribed with the date 1708.

In times past, leprosy patients were forcibly admitted to Hendala, but the hospital stopped taking new admissions in the early 1980s. Today Hendala is home to 47 men and women ranging in age from 35 to 103 who have chosen to remain there because they have nowhere else to go. The oldest inhabitant, 103-year-old Mr. Tisahami, is even older than Perry, a resident of the former National Leprosarium in Carville, Louisiana, whom I met when I visited the United States last year.

Sri Lanka has made great progress in fighting leprosy, despite the disruptions caused by the prolonged civil war, and I feel certain that one day it will be able to eradicate the disease altogether.

Scene from the Goodwill Ambassdor's recent visit to Oecussi-Ambeno enclave, Timor-Leste, in May
Scene from the Goodwill Ambassdor's recent visit to Oecussi-Ambeno enclave, Timor-Leste, in May

Timor -Leste (MAY 19-21)

In May I also made my third visit to Timor-Leste, when I was invited by the government to attend the eighth anniversary of the country's independence. Timor-Leste is one of just two countries that have yet to eliminate leprosy as a public health problem, so I used the opportunity to meet those engaged in leprosy control activities and to encourage them in their efforts.

When the Health Ministry of the newly independent country launched its national leprosy elimination program in 2003, Timor-Leste had a leprosy prevalence rate of 7.5 per 10,000 people. Together with the WHO and The Leprosy Mission International (TLMI), it engaged in capacitybuilding of personnel, early detection and ensuring access to a stable supply of the drugs used in multidrug therapy.

As a result of these efforts, the prevalence rate fell to 1.52 by 2009. Today, of Timor-Leste's 13 provinces, 8 are already past the elimination milestone. However, there is still work to be done.

During my stay, I called on the TLMI offices in Dili, the capital. TLMI is the only international NGO operating in Timor-Leste on behalf of people affected by leprosy. Next, I sat in on a training session for health volunteers from surrounding villages who were being taught about leprosy. The Integrated Community Health Service (SISCa) volunteers, who are drawn from the local community, play an important supporting role given the country's small number of medical personnel.

On my last day in Timor-Leste, I flew by helicopter to Oecussi-Ambeno District. This was my second visit to this coastal enclave separated from the rest of the country by West Timor, which is part of Indonesia. Oecussi-Ambeno has a very high PR of 6.39 per 10,000 in a population of 60,000. By way of partial explanation, this was an area where people with leprosy congregated at the beginning of the 19th century.

My destination was a rehabilitation center about 40 minutes by car from the helipad. This was built by TLMI in 2008 and is jointly operated with the health ministry. It serves both persons who have been treated and cured of leprosy but have residual disability, as well as others with disabilities unrelated to leprosy. When I visited, some 40-50 persons were undergoing rehabilitation.

While in Oecussi-Ambeno, I was concerned at the talk I heard about the high number of cases in children aged between three and five. If true, this would be most unusual, and the WHO needs to dispatch an expert to find out exactly what is going on.

After eight years of independence, Timor-Leste still faces a mountain of challenges. However, I am hopeful that it will be able to resolve one of them - the elimination of leprosy as a public health problem - in the not too distant future. It has my full support.