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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Keeping an Eye on Progress

Journeys to Niger, the DR Congo and India provide an update on leprosy control efforts in three countries where many challenges remain.

NIGER (AUGUST 7-10)

In August I made my first visit to the Republic of Niger. Two-thirds desert, Niger has a population of 13.5 million and shares its borders with seven other countries. According to the UNDP's Human Development Index rankings, it is among the poorest nations in the world.

Notwithstanding the many difficulties the country faces, Niger achieved the WHO's goal of eliminating leprosy as a public health problem in 2002. Last year, it reported 610 new cases of the disease, and had a leprosy prevalence rate (PR) of 0.39 per 10,000 population. At the sub-national level, the disease prevalence rate has fallen below one in all but two of its 42 provinces.

In recent years, however, Niger has not drawn up a new plan to sustain these achievements and further reduce the disease burden, and has not been taking advantage of the free MDT available from the WHO, relying instead on an NGO to supply the drugs. Therefore, the purpose of my visit was to refocus attention on leprosy and encourage the government to move forward and tackle the remaining challenges.

Calling at the health ministry the day following my arrival, I thanked Minister Issa Lamine for what Niger had achieved so far, and urged him to make it the first country in Africa to wipe out leprosy altogether. The minister indicated his willingness to aim for this goal, and vowed to step up activities to combat the disease in the two provinces where efforts are lagging behind.

My next appointment was with Minister of Population and Social Reform Zila Manane Bookani. I underlined the necessity of ending stigma and discrimination against people affected by leprosy, and briefed her on the resolution to this effect that was unanimously approved by the Human Rights Council in June. For her part, she told me that people affected by leprosy in Niger are among the poorest members of society, and that the ministry is working with various NGOs to address their many needs. She added that Niger conducts nationwide events and radio campaigns on World Leprosy Day to promote public awareness of the disease.

Niger's Minister of Public Health Issa Lamine

In the afternoon, I met with a couple of NGOs - Raoul Follereau Niger and Serving in Mission. Our discussions left me with the distinct impression that without the efforts of these organizations - which provide skills training, literacy programs, agricultural support, and microfinancing - the social rehabilitation of people affected by the disease would be very difficult.

On the third day, I met with people affected by leprosy themselves. First I called at the National Center for Dermatology and Leprosy. Built it 1981, it initially specialized in leprosy, but now treats other skin diseases as well. Then I traveled to Koira Tegui, a village of 215 households of people affected by leprosy and other persons with disabilities on the outskirts of the capital, Niamey.

The villagers gave me a wonderful welcome. They sang and danced, and the young men of the community treated me to a demonstration of local wrestling. I was happy that these scenes were being recorded by a TV crew as I believe such positive images go a long way to lessening the stigma and discrimination attached to the disease.

I believe such positive images go a long way to lessening stigma and discrimination.

Beating out a welcome at Koira Tegui village in the outskirts of Niamey

The same day, I was invited to the private residence of Prime Minister Seyni Oumarou. He was surprised to see me dressed in traditional Niger attire and said it sent the message that “you are thinking about Niger's problems with us.” The prime minister voiced support for eradicating leprosy from Niger completely, and promised to redouble efforts to that end.

My visit concluded with a press conference, where I was joined by the health minister and the population minister as well as some village leaders from Koira Tegui whom I had invited to attend. The health minister reiterated the commitment he gave me to tackle the disease, and said that the government would be liaising closely with the WHO on a number of issues, including strategy, drug supply and the deployment of human resources. I am hopeful that my visit has succeeded in galvanizing the government to engage more fully with leprosy, and I look forward to seeing how these intentions are translated into actions on the ground.

DEMOCRATIC REPUBlIC OF CONGO (AUGUST 12-16)

Villagers gather on the shore of Lake Tanganyika for the arrival of the Goodwill Ambassador

From Niger I traveled to the Democratic Republic of Congo, which I was visiting for the third time. The DR Congo achieved the WHO's leprosy elimination goal at the end of last year, when the disease prevalence rate dropped to 0.97 cases per 10,000 population.

Frankly speaking, I did not think that the DR Congo would be capable of passing this milestone so quickly. Parts of the country are still at war, its infrastructure needs building up, and diagnosing and treating the hunter-gather tribes that live in the extensive tropical rain forests of the Congo River basin presents a real challenge. The fact that it was able to achieve the elimination goal is a great credit to all involved in leprosy work

However, as with other countries that have achieved the elimination goal at the national level, the DR Congo still has pockets of high endemicity. It is therefore essential that there is no slackening of effort to control the disease. With this in mind, the purpose of my visit was both to mark the achievement of elimination with those responsible, and see for myself an area where the prevalence rate remains troublingly high.

My destination was Moba district in Katanga Province, one of four provinces where the disease is still at the level of a public health problem. Accompanied by Health Minister Dr. Victor Makwenge Kaput and the WHO country representative, I flew to the provincial capital of Lubumbashi, some 2,000 kilometers southeast of Kinshasa. From there we transferred to a 16-seater propeller plane for the 600-kilometer flight north to Moba. As we approached the dirt airstrip, I could see crowds lining the runway awaiting our arrival.

Alighting from the plane, we were met by a group of women who sang and danced for us. There must have been upward of 1,000 people who turned out to meet us.

After spending the night in a former Belgian mission, we journeyed by boat along the shore of Lake Tanganyika to the village of Mulunguzi, whose population of some 1,900 includes many people affected by leprosy. Hundreds of villagers had gathered to meet us. Stepping ashore, we were escorted to the Mulunguzi health center, walking in a huge cloud of dust thrown up by the crowds accompanying us.

Presenting a plaque to mark the achievement of elimination to DR Congo Health Minister Kaput.

The health center serves around 14,000 people. Last year, 110 new cases of leprosy were detected. It is something of a mystery why the prevalence rate remains so high, and I was told that the health ministry, NGOs, and a group of American researchers have plans to look into this.

Next we called at the 150-bed Moba hospital. For the occasion of my visit, the hospital had arranged for a group of leprosy outpatients to meet me. They had come with their wives and children and chatted to me in an easy-going manner. I learned that several families of affected persons lived in an area not far from the hospital. Even after being cured, they are unable to go back to their villages because of discrimination.

At the end of the day we returned to Lubumbashi for an official declaration of leprosy elimination. Planned to coincide with my visit, the event was attended by a great many media people. A lot of the questions they posed were fairly rudimentary, but I was happy to answer them all, since spreading correct information about the disease is vital to reducing stigma.

At a function that evening to mark the achievement of elimination, I toasted the DR Congo's success, promising the health minister I would return next year to help the country build on the achievement.

INDIA (SEPTEMBER 1-8)

With auxiliary health workers and ASHAs in Varanasi

I am no stranger to India, and over many visits I have seen discernable progress in the fight against leprosy. As I remarked during a courtesy call on the Ministry of Health and Family Welfare in September, I remember when the map of India on the office wall of the deputy director general (leprosy) presented a very different picture of disease prevalence.

Dr. P.L. Joshi, the current DDG, assured me that the level of political commitment is very high, and is for the long-term. He also told me about a number of new initiatives to improve health coverage at the grassroots level, including the appointment of female health volunteers known as accredited social health activists, or ASHAs, who are rewarded for each new case of leprosy they find. Hopefully, this will lead to a lot of awareness-generation that should further assist in reducing the disease burden. There is no room for complacency: although India achieved elimination at the end of 2005, it still has the largest number of new cases of the disease in the world - some 139,000 in 2007 - so its efforts at disease control must continue.

My purpose in visiting in India this time was two-fold: to attend a seminar in Delhi to brief Indian media and partners on the Human Rights Council resolution in June, and to take part in a meeting in Kolkata of the National Forum of people affected by leprosy. Among the speakers at the human rights seminar was the charismatic Swami Agnivesh, who noted, “India takes pride in being the most religious country in the world, yet we practice the worst forms of discrimination.”

In Kolkata, I told the packed gathering of people affected by leprosy that they must take the initiative to change society. “You are the main actors,” I said, while pledging my full support for their quest for integration and empowerment.

En route to Kolkata, I made my first visit to the holy city of Varanasi, where I visited a couple of colonies as well as two primary health centers. Kashi Vishvanath Kusthya Rogi Seva Samiti was the smaller of the two colonies, home to about 80 residents, 40 of whom were people affected by leprosy. I was interested to learn that this colony has a policy of having children move out when they marry, so that the second generation doesn't become entrenched there. I was also greatly impressed by the musicians who performed for me. Not only did they play with great skill, despite their disabilities, but the expressions on their faces spoke of the redemptive power of music and its ability to nourish the soul.

Varanasi district has a population of 314,927. It is served by six primary health centers, four community health centers, 22 additional primary health centers and 253 subcenters. I visited two of these PHCs. At the first I met around 30 auxiliary midwives and ASHAs, thanking them for the important work they were doing in delivering health care services at the grassroots level, and asked them to focus not only on medical issues but the social aspects also. Both at this PHC and at the second center, I met patients on MDT who, thanks to early diagnosis and the prompt start of treatment, displayed no deformity. This is having an important impact on reducing stigma, and I am sure the work of the ASHAs and auxiliary health workers will help to strengthen this trend.