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Friday, October 31, 2014

Frey speaks at the 4th meeting of the International Working Group on Leprosy and Human Rights in Morocco

iwg.png Today, freely available multi-drug therapy has ensured that leprosy does not pose a serious public health concern. However, the stigmatization of millions of people affected by the disease remains largely unaddressed. This work was taken up by the United Nations Sub-Commission on the Promotion and Protection of Human Rights in the early 2000s. Their work led to the adoption of Resolution A/RES/65/215 by the UN General Assembly in 2010 which outlined the "Principles and Guidelines for the Elimination of Discrimination against Persons Affected by Leprosy and Their Family Members". It was followed by the Nippon Foundation's initiative in 2011 to disseminate the Principles and Guidelines throughout the world.



The International Working Group (IWG) on Leprosy and Human Rights was born out of a resolution adopted at the first symposium organized by the Nippon Foundation at Rio de Janeiro in 2012. As a member of this International Working Group, Barbara Frey, Director, Human Rights Program, University of Minnesota, delivered the following speech at the Middle Eastern Regional Symposium on Leprosy and Human Rights held in Rabat, Morocco on October 28, 2014.

"I would like to extend my thanks to the organizers of this Middle East Regional Symposium on Leprosy and Human Rights, especially to the Government of Morocco, the Nippon Foundation, and Mr. Sasakawa, the World Health Organization Goodwill Ambassador. I am honored to be invited to speak today on behalf of the International Working Group on Leprosy and Human Rights. The Working Group was established in 2012 to consider methods of implementation of the "Principles and Guidelines for the Elimination of Discrimination against Persons Affected by Leprosy and their Family Members," (which were just presented by Mr. Sakamoto.) Members of the IWG, representing various geographical regions and expertise, and including persons affected by leprosy, have been working since then, with the support of the Nippon Foundation and a National Advisory Group in Japan, to develop a plan for effective follow up of the Principles and Guidelines.

Endorsed by the UN General Assembly in December 2010, the Principles and Guidelines represent a landmark achievement in affirming the human rights of persons affected by leprosy and their family members. The international instrument consists of two parts: the Principles, which restate and recognize the most basic human rights that extend to all persons affected by leprosy and their family members. The second part consists of the Guidelines, which elaborate in concrete terms the responsibilities of States to promote, protect and ensure the realization of all human rights of persons affected by leprosy and their family members. The Principles and Guidelines confirm and build upon the core international guarantee of non-discrimination which is so deeply embedded in human rights law. The Principles and Guidelines set forth the standards of behavior that have been deemed necessary for States to achieve their responsibility to prohibit all forms of discrimination against persons affected by leprosy and their family members.

The Principles and Guidelines have their roots in the UN Charter, by which each state has acknowledged its common faith in "fundamental human rights, in the dignity and worth of the human person, in the equal rights of men and women and of nations large and small." The global commitment to human rights cannot be achieved if the rights of any particular group of people are not fully respected and protected. The centrality of the principles of equality and non-discrimination in international human rights law and the adoption and endorsement of the Principles and Guidelines by the UN Human Rights Council and the General Assembly mean that these standards carry authoritative weight in international law. These measures can be therefore used as a measure to assess State practice.

There are many actors who must be involved in ensuring that the standards in the PRINCIPLES AND GUIDELINES are carried out. First and foremost are States, which have the primary obligation to respect, protect, fulfill and ensure human rights for all. As such, States are called upon to modify, repeal or abolish existing laws, regulations, policies, customs and practices that discriminate directly or indirectly against persons affected by leprosy and their family members. All parts of government, including the executive, legislature, and judiciary, as well as local governments, and institutions under the control of governments, must act in conformance with the Principles and Guidelines. Governments should also take steps to ensure that the rights of persons affected by leprosy and their family members are protected in the private sphere through appropriate regulations related to the actions of individuals, groups and private enterprises. The International Working Group recommends that States, therefore, adopt and carry out their own national plans of action and collect information regarding the actual status of implementation of the Principles and Guidelines.

To assist with this process, the International Working Group has prepared a "Suggested Framework for National Plans of Action" for States to use in their own domestic contexts. The elements of this suggested framework include the following:
• A clear statement of objectives
• A timeframe for achieving the stated objectives
• Cooperation with stakeholders, most importantly with persons affected by leprosy
• Law reform, including repeal of laws that directly or indirectly violate the rights of persons affected by leprosy and their family members; and the removal of discriminatory and offensive language;
• Provision of remedies, including judicial remedies
• Special attention to women, children, the elderly and other vulnerable populations
• Rights related to the family, including the right to marry and raise children, and support for reunification of family members separated as a result of past policies and practices;
The Framework for National Plans further includes:
• An emphasis on inclusion and participation in the community,
• The rights to political participation, to work, education and training;
• The right to health, including early diagnosis and prompt treatment for leprosy, free medication, counseling and rehabilitation;
• The right to an adequate standard of living and social security;
• And a plan for awareness raising to foster respect for the rights and dignity of persons affected by leprosy and their family members.

In addition to States, the UN General Assembly also encouraged other actors to give due consideration to the Principles and Guidelines in implementing policies with regard to persons affected by leprosy, including relevant UN bodies, specialized agencies, funds and programmes, other intergovernmental organizations and national human rights institutions.

Of course, persons with leprosy themselves must be central actors in implementing the PRINCIPLES AND GUIDELINES. The right of persons affected by leprosy to be actively involved in decision-making processes is underscored in the Principles and Guidelines with regard to policies and programs that directly concern their lives and the lives of their family members. The affected individuals are powerful agents of social change who should act, individually and collectively through their respective local, national and international organizations to claim and implement their human rights.

To ensure effective implementation, the International Working Group further emphasizes the importance of awareness-raising activities to be carried out by all sectors. States are encouraged to work together with national human rights institutions, NGOs, civil society and the media to foster respect for the rights of persons affected by leprosy and their family members. Civil society organizations and social institutions, including schools, religious communities and centers of art and culture are critical partners in helping to remove the misconceptions associated with leprosy and in raising public awareness about the disease and its impacts.

In addition to these domestic-level activities, the International Working Group has concluded that the P&G are most likely to be given effect if States are called upon to take specific implementing actions, including conducting studies, collecting and analyzing data, bringing these instruments to the attention of various governmental offices and reporting back to a specified international body. To ensure these measures are taken by governments to implement the P&G, the International Working Group further recommends the establishment of a follow-up mechanism at the international level that would have the authority to monitor the actions of States. Drawing upon the experience of independent committees of experts that function to monitor the implementation of international human rights treaties in the UN as well as the International Labour Organization's Conventions and recommendations, the INTERNATIONAL WORKING GROUP recommends that the UN Human Rights Council request its Advisory Committee to study and recommend an appropriate follow-up mechanism at the international level.

The International Working Group further recommends that whatever follow-up mechanism is created be empowered to distribute as soon as possible a questionnaire to States in order to collect data regarding the actual practice of States in implementing the P&G. To assist with this data gathering, the International Working Group has prepared a draft questionnaire which can be adapted for this purpose. The questionnaire calls for information with regard to the following topics: (i) basic epidemiological and clinical management status of leprosy, (ii) healthcare, (iii) abolishment of discriminatory laws, (iv) establishment of a national committee, (v) awareness raising, translation and dissemination of the Principles and Guidelines; (vi) reporting to international human rights bodies, and (vii) adoption of a National Plan of Action.

In sum, the 2010 endorsement of the Principles and Guidelines by the UN General Assembly represented a significant turning point in the recognition of the full human rights of all persons affected by leprosy and their family members. These standards have been welcomed by tens of millions of persons who have endured the stigma associated with this disease. The Principles and Guidelines provide the international community with a solid base from which to work together to ensure the full realization of immediate and effective elimination of discrimination resulting from leprosy. We look forward to working with the international community in the next phase of effective implementation of these critical standards. On behalf of the IWG, I thank you for your support and participation in this historic process."