Summary

In the present report, the Special Rapporteur on the elimination of discrimination against persons affected by leprosy (Hansen’s disease) and their family members, Beatriz Miranda-Galarza, examines care and support for persons affected by leprosy and their families through a human rights lens. In her report, the Special Rapporteur presents the first-hand experiences of those affected by leprosy and offers guidance to States on ensuring rights-based care and support, emphasizing people’s participation. The report also contains an overview of the activities undertaken by the Special Rapporteur since her appointment in October 2023.

In her report, the Special Rapporteur highlights the urgency of integrating leprosy into global discussions on human rights-based care and support aligned with the Sustainable Development Goals and underscores the significant workload borne by persons and families in caring for affected relatives. She calls for the shared responsibility of families, communities, States and the private sector to be recognized. The Special Rapporteur identifies a persistent gap in the representation of caregivers and receivers of care and support in the development and implementation of laws, policies and programmes related to care and support, partly stemming from historical misconceptions of leprosy care and support as merely charitable. In addition, valuable insights from the leprosy field on self-care are often overlooked due to the limited participation of affected persons in decision-making processes.

The Special Rapporteur expresses her gratitude for the support and feedback received from persons affected by leprosy, disability rights activists, the Special Procedures Branch of the Office of the United Nations High Commissioner for Human Rights, and various United Nations agencies actively engaged in advancing a human rights-based approach to care and support for persons affected by leprosy.