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Yohei Sasakawa: Leprosy also requires a social cure

Posted by Eagle Eye
  • Tuesday, 27 October 2009 at 10:25 am
Earlier this month, Father Damien was canonised by Pope Benedict XVI in Rome. This religious and spiritual ceremony was an opportunity to reflect on Father Damien's life and the lives of those with whom he is most closely associated - people affected by leprosy.

In 1873, Father Damien, a Belgian priest, went to live among people with leprosy who had been exiled to an isolated peninsula on Molokai Island in Hawaii. It was a time when leprosy was feared as a dangerous, contagious disease that had no cure. The world is dotted with such islands where people with leprosy were banished, including Robben Island in South Africa, where Nelson Mandela would later serve time as a political prisoner; Culion Island in the Philippines; various islands in the Mediterranean; and five islands in Japan. For the next 16 years, until he himself died of the disease, Father Damien devoted his life to the welfare of people affected by leprosy on Molokai.

Today, leprosy is a curable disease. Since multidrug therapy (MDT) became available in the early 1980s, some 16 million people have been cured. In 1985, when the World Health Organization set a target of reducing the prevalence of the disease in each country to less than 1 case per 10,000 people, 122 countries had yet to achieve that goal. Today, only three have still to do so. It won't be long before the disease is no longer a major public health problem in any country.

But the fight against leprosy has another aspect. By way of explanation, I often use the example of a motorcycle. The front wheel represents the medical battle to eliminate the disease; the back wheel symbolizes the effort on a social level to tackle the stigma and discrimination that leprosy causes.

All over the world, people affected by leprosy and their family members have suffered from social discrimination. To escape it, many were forced to form colonies and live on the margins of society. Segregated communities are still found today, and it is extremely unfortunate to find responsible newspapers frequently referring to their occupants by the pejorative term "leper." Such stigmatizing terminology assaults the dignity of people affected by leprosy and is a major cause of the discrimination and prejudice that they suffer.

Over the years, people affected by leprosy have had their natural rights denied them with regard to education, employment, marriage and participation in community life. Even their perfectly healthy children suffer. Hotels and restaurants have been known to refuse entry to people affected by leprosy, who are often denied access to public services. Discrimination is a constant feature in many aspects of their lives.

Stanley Stein, who spent some 40 years behind barbed wire as a patient and patient activist at the now-closed leprosarium in Carville, Louisiana, once wrote, "The ravages of the stigma of this disease are as great as the ravages of the germ." I wonder how many people know that the United States, a champion of human rights, denied the vote to persons with leprosy until after World War II.

The back wheel of the motorcycle belatedly began to turn when a resolution submitted by the Japanese government calling for an end to discrimination against persons affected by leprosy and their family members was passed unanimously at the Human Rights Council in June last year. Since then, draft principles and guidelines for ending discrimination have been drawn up by the Council's Advisory Committee. These were submitted to the Council's recently concluded 12th session, where members resolved to have a finalized draft presented at its 15th session next year.

Slowly but surely, the fight to recognize the rights of people affected by leprosy is bearing fruit. But, as we celebrate the canonization of Father Damien and a life of selfless service, let us acknowledge that it takes all of us to rid the world of discrimination.

Yohei Sasakawa is WHO Goodwill Ambassador for the Elimination of Leprosy, Japanese Government Goodwill Ambassador for the Human Rights of People Affected by Leprosy, and Chairman of The Nippon Foundation, Japan's largest private grant-making foundation. 
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