Persons affected by leprosy (Hansen’s disease) must have access to the highest attainable standard of support and care: UN experts

GENEVA (25 January 2024) – UN human rights experts* today urged States and international organisations to incorporate into their policies and procedures the fundamental right of persons affected by leprosy (Hansen’s disease) to access high-quality support and care. They issued the following statement ahead of World Leprosy Day 2024:

“Thousands of people face leprosy-related discrimination and violence every year in total silence, including women, children and older persons. They often have to fight against the stigma, ostracism and shame of being affected by leprosy. This discrimination is evident in the implementation of disempowering approaches in all areas of their care, including health care by both States and private actors. They are perceived as passive recipients of care, undermining their right to participate in science.

With more than 200,000 new cases of leprosy each year worldwide, and an estimated one to two million people visibly and irreversibly disabled by past and present leprosy, there is an urgent need to establish human rights-based support and care systems, such as early detection, accessible and free treatment, continuous follow-up during and after treatment, rehabilitation and active accompaniment to facilitate their meaningful participation in the community. It is important to ensure that care systems respect and promote the dignity and autonomy of caregivers, care workers, and those receiving care, in line with the rights and principles emanated from international human rights law and standards. The diverse contexts in which persons affected by leprosy live must be taken into account in the implementation of such a system.

Despite the UN Principles and Guidelines which advocates the right to live in the community, numerous persons affected by leprosy still experience the repercussions of segregation policies, residing in areas commonly referred to as "ex-colonies" worldwide, and shunning away from public spaces and everyday interaction with other people. Moreover, there is an urgent need to highlight the consideration of the specific care and support requirements for individuals affected by leprosy with intersecting vulnerabilities including children, women, older persons, minorities, and Indigenous Peoples. Children in this context continue to be inadequately represented in social policies and programmes, including education. In addition, women, historically designated as care providers, bear a significant burden that renders them invisible in terms of their right to receive support, assistance, access to justice and reparation for the violence they often experience as a result of living with leprosy. Older persons also face a similar situation of neglect, stigma, oversight, and deprivation of liberty in care settings.

Finally, we call for the inclusion of rights of persons affected by leprosy and human rights defenders and CSOs advocating on their behalf, in discussions about the economy of care and support in the context of the Sustainable Development Goals. Persons affected by leprosy must regain control of their lives and their bodies. They must decide for themselves who provides support, how and where to receive support and to realise their right to development. Guaranteeing access to a high-quality support and health care system is not only a human rights obligation, but also a prerequisite for ensuring the elimination of discrimination against affected persons and their families.”

This statement is endorsed by the World Health Organization and UN WOMEN.

*UN experts: Beatriz Miranda-Galarza, Special Rapporteur on the elimination of discrimination against persons affected by leprosy (Hansen’s Disease) and their family members; Tlaleng Mofokeng, Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health; Mary Lawlor, Special Rapporteur on the situation of human rights defenders;Claudia Mahler, Independent Expert on the enjoyment of all human rights by older persons; Alexandra Xanthaki, Special Rapporteur in the field of cultural rights; Dorothy Estrada Tanck (Chair), Claudia Flores, Ivana Krstić, Haina Lu, and Laura Nyirinkindi, Working group on discrimination against women and girls; Reem Alsalem, Special Rapporteur on violence against women and girls, its causes and consequences; Siobhán Mullally, Special Rapporteur on trafficking in persons, especially women and children; Surya Deva, Special Rapporteur on the right to development; Cecilia Bailliet, Independent Expert on human rights and international solidarity; Heba Hagrass, Special Rapporteur on the rights of persons with disabilities; Michael Fakhri, Special Rapporteur on the right to food; Pichamon Yeophantong (Chair), Robert McCorquodale, Elżbieta Karska, Fernanda Hopenhaym, and Damilola Olawuyi, Working Group on the issue of human rights and transnational corporations and other business enterprises; Farida Shaheed, Special Rapporteur on the right to education; Muluka-Anne Miti-Drummond, Independent Expert on the enjoyment of human rights by persons with albinism; Livingstone Sewanyana, Independent Expert on the promotion of a democratic and equitable international order; Nicolas Levrat, Special Rapporteur on minority Issues; Barbara G. Reynolds (Chair), Bina D’Costa, Dominique Day, Catherine Namakula, Working Group of Experts on People of African Descent; Ashwini K.P,. Special Rapporteur on contemporary forms of racism, racial discrimination, xenophobia and related intolerance; Alioune Tine, Independent Expert on the situation of human rights in Mali; Paula Gaviria Betancur, Special Rapporteur on the human rights of internally displaced persons; Ana Peláez Narváez (Chair), Committee on the Elimination of Discrimination against Women (CEDAW).

The Special Rapporteurs and Independent Experts are part of what is known as the Special Procedures of the Human Rights Council. Special Procedures, the largest body of independent experts in the UN Human Rights system, is the general name of the Council’s independent fact-finding and monitoring mechanisms that address either specific country situations or thematic issues in all parts of the world. Special Procedures experts work on a voluntary basis; they are not UN staff and do not receive a salary for their work. They are independent of any government or organisation and serve in their individual capacity.