Fight to Eliminate Leprosy in the Central African Republic [2012/03/24]
Fight to Eliminate Leprosy in the Central African Republic
The following is a reprint of an article that was carried in the February 2012 issue of Kikuchino, published by the National Sanatorium Kikuchi Keifūen.
In April 1909, the Kyūshū Leprosy Sanatorium was established by the seven prefectures of Kyūshū, the southernmost of Japan’s four main islands. The facility was renamed National Sanatorium Kikuchi Keifūen in 1941; and today 359 men and women, averaging 80.6 years of age, live here.
Honmyoji Temple, located in the Kyūshū prefecture Kumamoto is dedicated to Kiyomasa Katō (1562−1611), a powerful daimyō who rebuilt Kumamoto Castle in 1607. The temple is said to have attracted a large number of leprosy patients who made a living by begging for money from visitors. Hannah Riddell, a British woman who came to Japan in 1891 for the Church Missionary Society, founded Kaishun Hospital after witnessing their plight.
Riddell played an influential role in the history of leprosy in Japan. Her records and other documents are now on display at the [building that once housed] Kaishun Hospital. A book about her, Hannah Riddell: An English Woman in Japan, written by Julia Boyd, the wife of the British ambassador to Japan, was published in 1996 . It is a work that I would recommend.
Around the same time, in 1898, Father Jean Marie Corre, a French Catholic, built a hospital for leprosy patients in Kumamoto City called Tairoin Hospital. Today, a handful of people cured of the disease live there.
From July 17 to 21, 2011, in my capacity as WHO Leprosy Elimination Goodwill Ambassador, I visited the Central African Republic, a landlocked country in central Africa that borders Chad, Sudan, South Sudan, the Democratic Republic of the Congo, Republic of the Congo, and Cameroon. Though I have made many trips to Africa over the years, this was my first visit to this country.
The Central African Republic has an area of 620,000 square kilometers and a population of around 4.3 million. It is located close to the equator, and the southern part of the country is covered with rainforests and dense vegetation.
The country gained its independence from France in 1960, but the political situation has remained unstable because of repeated coups d’etat and civil wars. In recent years, however, progress has been made in restoring order and stability.
As for religion, around a quarter of the population is Catholic, a quarter is Protestant, another quarter is Muslim, and a quarter is animist. The economy is primarily agrarian. Though there are diamond, gold, and uranium deposits, they have not been fully exploited because of political instability, and economic development has lagged.
In 2005, the national leprosy prevalence rate fell below 1 in 10,000, the level at which the disease is considered to be eliminated as a public health issue. However, the rate remains above that in 4 of 16 prefectures. And in 2010, 235 new cases were diagnosed, for a national prevalence rate of 0.52.
My trip to the Central African Republic was made for a reason. I had gotten word that the number of leprosy patients has risen slightly, something that could be attributed to the political instability as well as the lower priority the disease had in the government’s health policies. I decided to go there and appeal for a renewed commitment to the fight against the disease.
I arrived in Bangui on the afternoon of July 17. When I stepped out of the airplane, I was struck by the blistering heat and blazing sun, making me acutely aware I was in the heart of Africa. A group of officials met me at the airport, including Public Health, Population, and AIDS Minister Jean-Michel Mandaba ; Social Affairs, National Solidarity, and Gender Promotion Minister Pétro Koni Zezé née Marguérite; Primary and Secondary Education and Literacy Minister Gisèle Annie Nam; and Dr. Zakaria Maiga, the World Health Organization country office representative. Local residents performed a dance to welcome me. A group of men and women affected by leprosy were also there to greet me, something that had never happened in all my years of traveling around the world.
Before leaving the airport, I was interviewed by the local media. I spoke about the reasons for my visit, explaining that the prevalence rate for the elimination of leprosy had been achieved, but more work was needed to completely eradicate the disease and root out discrimination. I also expressed my hope that public awareness of the disease could be improved, including the fact that leprosy can be cured, its treatment is free, and discrimination against leprosy patients is unacceptable.
That evening, I visited the WHO office and was briefed on the situation in the Central African Republic by Dr. Maiga and other officers. The Central African Republic’s fight to eliminate leprosy is backed by the Swiss organization FAIRMED (formerly called ALES), a member of the International Federation of Anti-Leprosy Associations. The current initiatives, I was told, are targeted at Ombella-M’Poko near the capital, Lobaye, Vakaga, and Haute-Kotto, the four prefectures with a prevalence rate above one in ten thousand.
In my comments, I stressed that the conditions were in place to root out the disease completely and expressed my hope that my visit as a goodwill ambassador would be useful for facilitating the work of the health ministry.
On July 18, I visited the Ministry of Health and spoke with Health Minister Mandaba. I expressed my gratitude for the tremendous efforts that had been made to eliminate leprosy in the country, despite the small number of patients and the existence of other diseases that need to be dealt with, including HIV/AIDS, malaria, and tuberculosis. I asked that WHO and the health ministry continue to work together to further reduce the total number of cases. Mandaba responded positively, stating he would join forces with WHO to eliminate leprosy in the four prefectures. My own impression was that the health minister, despite his youthful age of 41 years, was hardworking and a man of his word.
Following the meeting, we drove two hours west and visited the village of Kaka deep in a forest in Lobaye Prefecture. The prefecture has 280,000 people, 52 of whom are registered leprosy patients, which puts the prevalence rate at 1.84. The indigenous people here, known as “pygmies,” are short in stature and semi-nomadic forest dwellers. The prevalence rate is apparently higher among them.
Upon our arrival, the entire village, young and old alike, performed a spirited dance and sang songs to welcome us. About 50 of the village people are affected by leprosy. I shook hands and greeted them one by one. Many have a disability, and I could see their wounds were not being cared for properly. My heart ached for them and the hardships I knew they must endure.
For the past year, Belgian nurses have lived in the village and provided health care services. The nurses came to the Central African Republic in 1985, but when they visited the village a year ago, they were so shocked by the conditions there they decided to stay on there.
One villager, speaking on behalf of the patients, described the sadness he felt when he found out he had contracted the disease and his despair as the disease progressed, deforming his hands and feet. There was also a request for shoes because many villagers with leprosy walk around barefoot, leaving the affected areas uncovered and unprotected.
The health minister, who accompanied me on this trip, made a speech. He said that after seeing me interacting with leprosy patients, he realized it was crucial that he and his compatriots first do what they can to alleviate the suffering of leprosy patients in their country.
I also addressed the villagers and told them leprosy is neither a divine punishment nor a highly contagious disease. I stressed that medication is free and should be taken at an early stage to prevent disabilities from developing.
At the end of our meeting, the villagers danced, and I, along with a mayor from a nearby city and the health minister, joined in. I think that in a small way, I was able to convey my message that all people, whether sick or healthy, are brothers and sisters and must stick together.
The following day, July 19, was spent entirely in talks with government officials. The day began with a courtesy call on Prime Minister Faustin Archange Touadera. During our meeting, I urged the prime minister to support programs aimed at reducing the number of leprosy patients and enhancing public awareness of leprosy. The prime minister revealed that an anti-leprosy program is under consideration that encompasses various measures to improve the lives of people with leprosy, including housing for those who are cured but have a disability and assistance to allow children affected by leprosy to attend school.
Prime Minister Touadera, noting Nippon Foundation’s involvement in agricultural programs in Africa, said that 80% of the people in the country are engaged in farming and that large-scale agricultural development programs are necessary to break the chain of poverty. I am in complete agreement with his view. I mentioned that an international symposium marking the twenty-fifth anniversary of Sasakawa-Global 2000, an initiative to increase food production, would be held in Mali in November 2011, and proposed that an official from the Central African Republic attend the gathering.
Following this, I met with Célestin Leroy Gaombalet, president of the National Assembly, and Zeze, the minister for social affairs who met me at the airport. President Gaombalet stated that it would be possible to consider legislation to ban discrimination against people affected by leprosy and increasing the budget for issues connected with leprosy. The social affairs minister, who oversees a broad range of issues connected with the elderly, people with disabilities, and discrimination, said the ministry would disseminate information to promote a proper understanding of the disease and help end discrimination.
On July 20, I visited the education ministry and met with three ministers: Higher Education and Scientific Research Minister Jean Willybiro Sacko, Technical and Professional Education and Training Minister Djibrine Sall, and Primary and Secondary Education and Literacy Minister Nam. Mr. Nam stated that younger children would be educated about leprosy, along with AIDS, malaria, and other public health issues. Mr. Sall, meanwhile, expressed concern that there is just one high school offering instruction in technology in the country, and that girls in particularly have few opportunities to get an education in this field.
I was also told by Mr. Sacko that there is just one university offering a general course of studies in the country, and that the number of enrollees had risen from 700 when the school opened 30 years ago to an estimated 20,000 for the coming term. He noted that farming techniques were being taught at the country’s agricultural university, and this in turn was contributing to the country’s development. The ministers’ comments made me acutely aware of the extraordinary difficulties of nation building within the confines of budget limitations.
For my part, I advised them that the vision of the educational system should be shaped by their own ideas of what is right for their country, rather than what other countries are doing. I stressed that people are the key to the future, but the cultivation of human resources is something that takes decades and whose progress unfolds slowly. As the old Chinese saying goes, “If you want a year of prosperity, grow grain. If you want 10 years of prosperity, grow trees. If you want 100 years of prosperity, grow people.” Finally, I reiterated a point I had made to the prime minister, namely, that agricultural production and instruction in farming were the keys to alleviating poverty and achieving development.
My trip to the Central African Republic also included a visit to the UN Integrated Peacebuilding Office, where I exchanged views with Margaret Aderinsola Vogt, special representative and a specialist in human rights issues. I was able to report to her that after years of making calls in the UN Human Rights Council, which meets in Geneva, a resolution was adopted in 2011 by the council, through a unanimous vote of all 192 countries in the UN General Assembly, calling for the elimination of discrimination against persons affected by leprosy and their family members. I added that though the adoption of the resolution will not mean an end to discrimination, it does offer a means for approaching heads of state and media organizations and will contribute to changing laws and customs.
Ms. Vogt touched on the local belief in magic and the problem this poses for human rights, explaining that many people in the Central African Republic think those with a condition such as leprosy or a disability, as well as women who are ill, are under a spell. This, she lamented, is why they sometimes become the target of criticism and in extreme cases are killed. She stressed that we needed to ensure this does not happen and added that the scenes of me with leprosy patients in the media would go a long way toward overcoming discrimination.
The same day, I visited a health center in Darama district, about 24 kilometers away from Bangui. The center is one of the five leprosy clinics that have existed in the country. In 2000 it was integrated with a health clinic and has served both functions since then. At present, eight people are being treated for leprosy on an outpatient basis. Upon looking around, however, I could not find a single multidrug therapy medication, and I saw that patient records were incomplete. I was told that MDT was on order and the staff had fled because of the recent unrest. Of all the health clinics around the world I have been to, however, this was the first one that did not have MDT, and I could not help feeling that the struggle against the disease there is in limbo.
Later that afternoon, I held a press conference and recounted my four-day trip. Many media personnel had accompanied me during the trip, closely covering my arrival at the airport, the meetings I had with high government officials, and my visits to the health center and other facilities. I noted that the cooperation of the media is essential to finding a resolution to leprosy and related issues. Early detection and treatment, for example, are not possible if people are ashamed of the disease and try to hide it. Reintegration into the community is also not possible if people cured of leprosy are discriminated against. The medical and social dimensions of leprosy must be dealt with, and the media has enormous potential to serve as a catalyst for change in social attitudes. This was one of the things I touched on in response to their questions, in addition to requesting their continued cooperation in the future.
On the last night of my stay, I attended a reception hosted by the government. The president was not present, but Prime Minister Touadera was on hand, as were most members of the Cabinet were, along with a number of representatives of international organizations. I was presented with an award from the Central African Republic government for my efforts in fighting leprosy. The award gave me new motivation to remain passionate and unwavering in my fight against the disease. I believe, however, that the medal also honors all of the people who have been with me in this struggle, including officials from the WHO and the health ministry, NGOs staff, and, above all, the people affected by leprosy.
The poverty and suffering of the people affected by leprosy and the lack of MDT at the health center were painful reminders that there are still places that do not provide essential health services. During my trip I had a chance to meet many of the country’s leaders, and I was encouraged by their show of support for the fight against leprosy. I strongly hope that my trip will serve as a springboard for cooperation by the WHO and the health ministry in eliminating leprosy in the four states where the prevalence rate is still high−subsequently bringing the number down to zero and putting an end to discrimination. The trip provided me with the chance to renew my lifelong commitment to the fight against leprosy.