Briefing on " Leprosy and Human Rights "
Monday , August 4, 2003

This meeting, organised by The Nippon Foundation and Sasakawa Memorial Health Foundation, aimed to explain both the history as well as the current extremity of the global discrimination against those touched by leprosy. Dr Kenzo Kiikuni (Chairman of the Sasakawa Memorial Health Foundation) lead the meeting.

Mr. Yohei Sasakawa (WHO Special Ambassador for the Elimination of Leprosy and President of The Nippon Foundation) explained that leprosy, although it is an ancient disease, still exists in today's world. The disease consists of a medical aspect and a social aspect (the discrimination that the disease generates within society). Leprosy can now be cured within a year with a highly effective multi-drug therapy (which can be obtained free of charge). Because the elimination of leprosy as a public health concern is now in sight, Mr. Sasakawa believed it was time to tackle the social aspect of the disease. Individuals with leprosy have been treated with fear and intense prejudice. They were ostracized from society, isolated, and lost all identity except for the identification numbers forced on them by the government. As families distanced themselves from relatives with leprosy, those with the disease became less visible within society.

In the past, the plight of those with leprosy had not been discussed as a human rights issue. Mr. Sasakawa believes that it is a global responsibility to help provide treatment for the victims of the disease. Furthermore, he believes countries should seriously question of the dignity and social recognition of former patients. According to Mr. Sasakawa, "the Human Rights Commission will take this issue up as a vital human right issue and bring this to the attention to other relevant human rights agencies and to the wider public".

Dr Arturo Cunanan (Head, Technical Division, Culion Sanatorium and General Hospital) spoke about the "Philippine Experience" at the Culion Leper Colony. He explained how Culion Island was selected as a segregation colony in 1901. He then outlined the historical events and the background of the Colony: compulsory segregation of "lepers", isolation/restrictions rules, prohibition of marriage and having children, separation of children of "leprous parentage", along with several other discriminatory regulations. He discussed the effects of these regulations on past and present Culion generations. Dr. Cunanan claimed that a stigmatisation still exists against those with leprosy.

Mrs Birke Nigatu (Ethiopian National Association of EX-Leprosy Patients (ENALEP)) outlined that leprosy is one of the endemic diseases found in Ethiopia. As a result of segregation, victims of leprosy endure intense poverty, improper treatment and a growing sense of inferiority. Most victims are unaware that leprosy is curable. Furthermore, employment opportunities are limited for those with the disease. ENALEP is lobbying for proper leprosy medication and prosthetics. It needs a strong collaborated effort of governmental and non-governmental organisations (as well as interested individuals) in order to solve all these problems.

Mr. Jose Ramirez (International Association for Dignity and Economic Advancement (IDEA)) gave a speech about "The Power of Ignorance". He spoke about his own experience with Hansen's disease (commonly known as leprosy) more than 30 years ago. When he was diagnosed with the disease, Mr. Ramirez experienced a "sensation of becoming a non person". Mr Ramirez asked the Commission not to remain silent about Hansen's disease.

Dr P.K. Gopal, President of IDEA India, spoke about the situation of leprosy in India, where the number of affected persons has always been the highest in the world. He pointed out that the beliefs among the lay people created the stigma against leprosy in the country. Many laws were enacted in order to segregate the affected persons from the community. The International Organisation IDEA was started in 1994 by persons affected by leprosy in order to fight against prejudice and to dignify their lives. According to Dr. Gopal, it is necessary to make the persons affected by leprosy conscious of human rights. Furthermore, he believes that victims of leprosy should be sensitized to violations against their human rights in order to prevent future discriminatory practices. These victims should report the incidents to concerned authorities in order to help solve the problems.

By: Paula Bula and Melvina Araman

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