Who Goodwill Ambassador's Newsletter

WHO GOODWILL AMBASSADOR’S NEWSLETTER June 2004 • Number 8 FOR THE • Leprosy is curable Elimination • Free treatment is available OF Leprosy • Social discrimination has no place Residents of Khokana settlement near Kathmandu, Nepal A MESSAGE FROM THE GOODWILL AMBASSADOR CONTENTS My Resolve to End Discrimination This spring I had the opportunity to attend the 60th become involved and create a climate in which Message 1 session of the United Nations Commission on the human rights of those affected by leprosy are Report from Geneva Human Rights (UNCHR), where for the first time I acknowledged. I am therefore much encouraged Making the case for addressed members on the stigmatization of people by the way that WHO Director-General Dr. Jong- human rights 2 affected by leprosy. From times past, people with wook Lee is speaking out on health and human Ambassador’s Journal the disease, as well as their families, have rights issues. Learning the history of traditionally been shunned by communities. Even Eventually, I want to see the U.N. come up leprosy on Malta, and though leprosy is now curable, many people still with a set of guidelines concerning legislation, a first visit to Nepal 4 suffer deep-seated discrimination. education and awareness activities, showing The reason why this has not been taken up as governments and NGOs what they must do to Human Stories a human rights issue before is because the get rid of prejudice and discrimination. First, A quilter’s tale from 7 response to the disease has been primarily a though, we need the UNCHR to adopt a draft China medical one. Furthermore, patients and even resolution that advocates the human rights of Partners those cured of leprosy have been segregated from people affected by leprosy. This will serve as the Zen Ryo Kyo 7 society and unable to speak out. By bringing this basis to study measures necessary to eliminate News before the UNCHR, I wanted to expose the social discrimination. The support of all countries will Brazil launches discrimination that people affected by leprosy be essential, and those that express interest must elimination drive; face, and seek a global solution. be fully encouraged. WHO’s Dr. Lee Ingrained prejudice and discrimination are not Much work still needs to be done. But visits Japan 8 easily eradicated, however. In order for persons presenting the issue before the UNCHR was an From the Editors 8 affected by leprosy to gain social acceptance, not important first step and I am confident of seeing only must the disease itself be eliminated, but steady progress from now on. social attitudes must also be changed. Organizations concerned with human rights must —Yohei Sasakawa, WHO Goodwill Ambassador 1 REPORT FROM GENEVA FTEL Jun 04 • No. 8 Making the Case for Human Rights Yohei Sasakawa puts leprosy on the agenda at the U.N. Commission on Human Rights. At the end of March, WHO Goodwill Ambassador 2003, on the social and human aspects of leprosy. and Nippon Foundation President Yohei Sasakawa With the cooperation of Professor Paul Hunt, led a delegation to Geneva to take part in the 60th special rapporteur for the right to health, Sasakawa session of the United Nations Commission on returned to Geneva this spring to present an Human Rights held from March 15 to April 23, exhibition on people affected by leprosy, host a 2004. The issue he brought before the commission panel discussion with participants from Japan, was the discrimination in societies around the Brazil, India and the United States, and present an world toward those affected by leprosy and the oral statement to the commission. The Commission on need for guidelines to recognize and protect their Behind the initiative is the fact that while Human Rights meets human rights. progress is being made toward eliminating every spring in Geneva. Comprising a rotating membership of 53 states, the commission meets each spring for six weeks at the U.N.’s Geneva headquarters. Over 3,000 delegates from member and observer states and NGOs attend the annual session, during which the commission adopts about 100 resolutions and decisions pertaining to human rights. The UNCHR is assisted in its work by the Sub-Commission on the Promotion and Protection of Human Rights, a number of working groups, and a network of individual experts, representatives and rapporteurs mandated to report to it on specific issues. Sasakawa’s bid to get leprosy taken up as a human rights issue at the commission started last July, when he met Acting High Commissioner Bertrand Ramcharan in Geneva. At Ramcharan’s suggestion, he organized a panel briefing for members of the sub-commission on August 5, TAKING AIM AT DISCRIMINATION the seven-member panel included two whom felt ‘dead inside’, and the other Panelists share their thoughts on the persons affected by leprosy. who contemplated killing herself because urgent need to tackle stigma. Dr. P.K.Gopal, president, IDEA, she despaired of her future. When such noted how fear and unscientific beliefs suffering exists, said Borges, we must A panel discussion organized by the among lay people about the nature of not delay in working to achieve human Nippon Foundation on the sidelines of the the disease resulted in the stigmatization rights for all. 60th session of the Commission on of those with leprosy that persists Anwei Law, international coordinator, Human Rights provided moving today. The presence of a leprosy- IDEA, described society’s response to testimony as to why the social aspects of affected person affects the whole family, those with leprosy as “the most persistent leprosy must be addressed. he said, making it hard for a son or and pervasive form of social injustice that Chaired by Professor Kenzo Kiikuni, daughter to get married, and for the society has forced on its fellow human Sasakawa Memorial Health Foundation, family to find accommodation. He also beings.” People were segregated because pointed out that discriminatory they were deemed to be undesirable, WHO’s Helena Nygren-Krug legislation remains on the statute books expendable and inferior, she said, and in India, and that some hotels and even today, the historical tradition of temples still display signs refusing entry discrimination and seclusion continues. to those with the disease. “There are young people living in leprosy Zilda Maria Borges, IDEA-MORHAN hospitals even though they are Brazil, said that the end of leprosy will completely cured,” she said. “We should not come with the elimination of the be ashamed.” disease, but when those who have been Professor Paul Hunt, UNCHR special affected by it are recognized as having the rapporteur on the right to health, noted same human rights as everyone else in that the right to health was a society. She cited a couple of encounters fundamental human right found in the with women cured of leprosy, one of 1948 Universal Declaration of Human 2 FTEL Jun 04 • No. 8 leprosy as a public health problem by the end of fact that this was just one of dozens of 2005, social discrimination remains a deep- presentations made by NGOs on the day. seated problem. Elsewhere, there was interest, too, in the photo exhibit sponsored by The Nippon Foundation showing the plight of those facing leprosy-related Millions live in isolation. They discrimination. During his stay in Geneva, Sasakawa had have no homes to return to. meetings with Acting High Commissioner They are dead to their families. Ramcharan, Special Rapporteur Hunt, and with officials of IDEA, an international network of leprosy-rights groups that is striving to bring Although national isolation policies have been dignity to the lives of those affected by this largely abandoned and laws changed, and although discrimination. leprosy is now curable, in some cases the social He also met with Helena Nygren-Krug, WHO reaction to the disease remains so severe that even health and human rights advisor, who took part in those who have been completely cured are unable the panel discussion and stated WHO’s eagerness to take their place in society. to tackle leprosy from a human rights perspective. Given only three minutes to make his Ambassador Sasakawa plans to continue presentation, Yohei Sasakawa ran through the list participating in commission meetings in the future, of problems faced by those affected by the disease. working to see that the commission adopts a “Mr. Chairman, discrimination is still rampant. resolution that calls on governments to tackle the Those cured of leprosy still can’t marry. They can’t issue of discrimination. In particular, he wants to get work. They can’t go to school. They are still see the commission create guidelines for treated as outcasts. ... Many still think leprosy is governments, NGOs and other stakeholders that dangerous or hereditary. Many still see it as a will give impetus to efforts to end discrimination. divine punishment. And so millions live in In that regard, the visit to Geneva this spring isolation. They have no homes to return to. They was extremely valuable and will hopefully serve are dead to their families.” as an important stepping stone on the way to Afterward, many people came forward to seeing discrimination of the affected individuals request copies of the oral statement. It was and their families officially recognized as a encouraging to see the level of interest, given the human rights issue. I Rights. Discrimination on grounds of health status, former health status or a family member’s health status is unlawful, he said. The state is obliged to take measures to ensure its officials do not discriminate against those affected by leprosy, to make reasonable efforts to ensure that third parties don’t, and to educate the public.

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