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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

LEPROSY AND HUMAN RIGHTS: Ending Discrimination: Next Steps

Symposium series concludes with recommendations of International Working Group.

United we stand: (L to R) Naima Azzouzi, Jose Ramirez, Jr. and Jaime Garcia at the Geneva symposium on June 18

The fifth and final symposium in a series on leprosy and human rights organized by the Nippon Foundation was held in Geneva on June 18. Initiated as a follow-up to the 2010 U.N. General Assembly resolution on elimination of discrimination against persons affected by leprosy and their family members, the aim of the series was to disseminate the principles and guidelines accompanying the resolution and to ensure their effective implementation.

An International Working Group (IWG) composed of human rights experts, legal scholars and people affected by leprosy was formed after the first symposium in Rio de Janeiro in 2012 and met four times in order to formulate plans of action and a mechanism to monitor actions taken by states and other actors. Its report on “How to Follow Up the U.N. Principles and Guidelines” was presented at the Geneva symposium.

Co-hosted by the Graduate Institute of International and Development Studies, the day-long event featured a full program of speakers and panelists. The keynote address was delivered by WHO Goodwill Ambassador Yohei Sasakawa, preceded by video messages from U.N. Secretary-General Ban Ki Moon and WHO Director General Margaret Chan.

Dr. P.V.R. Rao of the WHO’s Global Leprosy Program provided delegates with an overview of the current status of leprosy in the world, while two separate panel discussions featuring people affected by leprosy from Indonesia, Morocco, Colombia, China, India, Ghana, Brazil and the United States gave their personal insights on the challenges of living with discrimination, actions being taken to overcome stigma and their hopes for the principles and guidelines.

Also presenting their views on how their organizations can help to end the discrimination associated with leprosy were representatives from the International Bar Association, the Jordan National Center for Human Rights, U.N. Human Rights Council Advisory Committee, International Federation of Anti-Leprosy Associations, World Medical Association, International Council of Nurses and Sasakawa Memorial Health Foundation.

Delegates, speakers and IWG members in Geneva: previous symposiums were held in Rio de Janeiro, New Delhi, Addis Ababa and Rabat.


Presenting the IWG’s report was Professor Barbara Frey, director of the Human Rights Program of the University of Minnesota. The group’s key recommendation was the establishment of an international mechanism to monitor the conduct of states and other actors in order to implement the principles and guidelines effectively. In addition, the IWG drafted a framework for model national plans of action and compiled a questionnaire to assist in investigating the actual status of implementation.

“We know where we want to go, which is the full implementation of the principles and guidelines. This mechanism is how to get there,” Professor Frey said.

“We know where we want to go, which is the full implementation of the principles and guidelines.”

Specifically, the IWG suggested that the U.N. Human Rights Council entrust its Advisory Committee, which was responsible for drawing up the principles and guidelines in the first place, to study and recommend an appropriate follow-up mechanism.

A Japanese government resolution along these lines was submitted at the 29th session of the Human Rights Council meeting in Geneva from June 15. It requested the Advisory Committee to undertake a study reviewing the implementation of the principles and guidelines and submit a report by 2017 with suggestions for their wider dissemination and more effective implementation. Co-sponsored by 94 countries, it was adopted unanimously.


“Your focus on the people themselves who have leprosy is so important. HIV/AIDS showed us that people living with AIDS made the difference. They exerted the political pressure. They moved into society, saying, ‘We belong here; this is where we want to be.’”

— Professor Ilona Kickbusch, Director, Global Health Programme, Graduate Institute, addressing the symposium on leprosy and human rights