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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

GLOBAL APPEAL 2015: Why Leprosy Now?

International symposium looks at some of the issues surrounding leprosy today.

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Kimie Yamauchi: “As people affected by leprosy, we have had to fight for the right just to enjoy a normal life.”

Following the launch of Global Appeal 2015, an international symposium on leprosy organized by the Nippon Foundation and Sasakawa Memorial Health Foundation was held the same day to explore themes ranging from dignified nursing care to the preservation of history and how society should respond to leprosy now and in the future.

“Why Leprosy Now?” opened with two perspectives on life as a person affected by leprosy. Vagavathali Narsappa from India developed the disease at the age of 9. Cast out of his village, he found it impossible to return home, even after treatment. “Rejected by my family, I discovered that my true family were other people affected by leprosy,” he said. Narsappa went on to form a society in his home state of Hyderabad to fight stigma and discrimination. He now heads the nationwide Association of People Affected by Leprosy.

Kimie Yamauchi of Japan was diagnosed with leprosy and admitted to National Sanatorium Tama Zenshoen in Tokyo in 1957 at age 22. She married a fellow patient the same year, but not before her husband-to-be underwent a vasectomy, as patients were not permitted to have children under the policy at the time. Many years later, Yamauchi rented an apartment near the sanatorium and for a time was able to live back in society with her husband, until his health worsened. “As people affected by leprosy, we have had to fight for the right just to enjoy a normal life,” she said.

“They do not have much longer to live. End-of-life care is very important.”

END-OF-LIFE CARE

The first of three panel discussions focused on “Leprosy, Medical Care and Nursing — Inclusive Dignified Care.” Presentations by Kristie Lane Ibardaloza, a nurse from the Philippines, and Dileep Kumar, president of the Indian Nursing Council, showed that educating the community, detecting cases early and seeing that patients take their medication are still important functions of nurses with regard to leprosy in those countries. By contrast, in Japan, which sees only a handful of new cases, the focus is on easing the final years of those who once had the disease.

Around 1,750 residents still live in Japan’s 13 national sanatoriums and more than half are over 85 years old. An increasing number suffer from dementia, few have contact with their families and many require extensive assistance and care, especially of the hands and feet. “They do not have much longer to live,” said Atsuko Kimura, assistant director of the nursing department at Tama Zenshoen. “End-of-life care is very important. Our mission is to make them feel, ‘I’m glad I have lived this long.’”

LESSONS OF HISTORY

The past and its relevance to the present and future was the focus of the second panel discussion: “Leprosy — A History that Must Not Be Forgotten.” Yasuji Hirasawa, a member of the steering committee of the National Hansen’s Disease Museum in Tokyo, said there had been considerable opposition to the idea of making a museum about leprosy and the lives of those who suffered under Japan’s Leprosy Prevention Law. But when the forerunner of the national museum opened in 1993, it helped pave the way for the law’s abolition in 1996.

Hirasawa now has three goals: to see leprosy museums established in other countries; to have the education ministry include information about leprosy in school textbooks; and to ensure that the lessons learned from the history of leprosy are utilized by society in the future. “We want our history to be handed down,” he said.

Dr. Kazuhisa Kuroo, the museum’s chief curator, said that one of the biggest transgressions of Japan’s past policy of isolation was preventing sanatorium residents from having children. “There is no second or third generation for them to pass their stories on to; once we lose this generation, there will be no one.”

The museum thus has an important role and responsibility to record their stories for posterity, Kuroo said. “People need to know that this history existed. It is a crime not to know.”

From the Philippines, Dr. Arturo Cunanan, chief of the Culion Sanitarium and General Hospital, discussed the history of Culion, once the world’s largest leprosy colony, and its transformation from an island of despair to an island of hope and renewal. “Patients struggled to regain their dignity and humanity and to be normal within an abnormal environment,” he said. It helped that they were allowed to have families, unlike in Japan. Today, about 80% of the population is descended from the first patients, and this has provided a continuing legacy for succeeding generations to know about the past.

Brazil has many stories to tell about leprosy, said Artur Custodio, the national coordinator of the Movement for the Reintegration of People Affected by Hansen’s Disease, MORHAN. These include everything from its past policy of mandatory segregation to the activities of medical police who took people away by force to be quarantined.

Many of the former colony hospitals where patients were isolated no longer exist; seven that survive have projects to preserve history and MORHAN is involved in five of these. One of the urgent tasks is to make a record of the personal histories of those who experienced colony life, he said. “People are dying. We have to move quickly to preserve this legacy.”

TOWARD INTEGRATION

The final panel discussion, which was chaired by Professor Yozo Yokota, focused on “Leprosy Today and Tomorrow — How Should Society Respond?” Joy in Action (JIA) work camps in China show one way forward. They involve students who spend time in some of that country’s 600 isolated leprosy recovery villages, working on building projects to improve living conditions, organizing social gatherings and offering companionship. “They go not as volunteers but as partners,” said Yinyue Lin, a JIA work camp coordinator.

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(Clockwise from top left) Dr. Silatham Sermrittirong, Professor Yozo Yokota, Kristie Lane Ibardaloza, Yasuji Hirasawa and Dr. Kazuhisa Kuroo

The students forge relationships with the villagers that profoundly influence each other’s lives. They also act as a link between the leprosy villages and the surrounding community and help to break down the barriers of stigma and prejudice. “In China, people assume that leprosy villagers don’t know much, but in fact they are the wise men of local culture,” Lin said.

In Thailand, the government is pursuing a program to integrate 12 leprosy colonies into the surrounding community so as to “demolish the wall that keeps us apart,” explained Dr. Silatham Sermrittirong of Raj Pracha Samasai Institute. To date, three colonies have been integrated and five more are in the process of integration.

In Brazil, MORHAN emphasizes the importance of involving a wide range of partners in order to raise awareness of leprosy and help find solutions to the problems people affected by leprosy face, said Thiago Flores, MORHAN state coordinator for Minas Gerais state in Brazil. “Brazil is a big country and there are many leprosy-related issues. We cannot achieve anything big by ourselves.”

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Thiago Flores: It is important to work with many partners.

The NGO has developed good relations with government, both at the regional and federal levels; it works closely with the Catholic Church; it involves celebrities “because they can be very influential”; and it approaches universities, not just the medical schools but also architecture and media departments, for example, to engage in projects that improve quality of life and build awareness.

“Through different activities, we want to enhance the understanding that people affected by leprosy are ordinary people, like anyone else, who just happened to have had leprosy,” he said.

COLLECTIVE RESPONSIBIITY

Gaining that understanding from society at large is also an ongoing mission of the National Hansen’s Disease Sanatorium Residents’ Association in Japan. But as Kazuo Mori, the association’s chairman explained, that task is made harder by the long shadow cast by Japan’s past policy, namely the Leprosy Prevention Law and the seeds of stigma and discrimination it sowed.

Not only does the public in general continue to harbor misconceptions about leprosy, but also the family members of people affected by the disease. “We cannot escape this law when we talk about leprosy,” he said, “It is still a challenge for residents to meet with their relatives — and many have not.”

Moderators as well as members of the audience made valuable contributions to the discussions during the course of the afternoon. Dr. Josephine Robertson of the University of Queensland, who chaired the history panel, captured the spirit of the occasion when she said, “It has come through clearly that there are many people who are making individual efforts to break down stigma and discrimination. There is also a plea for families to accept people affected by the disease, and for society as a whole to do so, which is an issue of collective responsibility. What is required is a response on many levels.”