GENEVA (24 January 2020) – Hundreds of thousands of women and children affected by leprosy suffer from informal segregation and institutionalized neglect and governments must put an end to it, a UN human rights expert said in comments marking World Leprosy Day on 26 January 2020.

Too many women and children affected by leprosy – also known as Hansen’s disease – are victims of stereotypes, physical and verbal abuse, delays of diagnosis and lack of adequate care, regretted Alice Cruz, UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.

“Affected people and their family members have been systematically subjected to dehumanization in different cultural backdrops,” Cruz said. “Stigmatization remains institutionalized in the States’ architecture and functioning: more than 50 countries in the world keep hundreds of discriminatory laws against leprosy-affected people. Discriminatory practices at the States’ administration endure,” she added.

According to her last report, too many cases of affected women and children are underreported due to institutional reasons. Children appear to be more prone to leprosy due to their immature immune systems but about 10 to 20 percent of them stop taking medicines because available treatments are not appropriate for their age. Almost half of affected women experience depression and/or suicidal thoughts.

The UN expert expressed concerns about the “complete lack of specific plans by States to address the particular needs of women and children affected by leprosy and to end discrimination and violence against them”.

“Affected people are not only those left furthest behind, they are actively being kept out of agenda, out of history,” she added.

Cruz welcomed improvements in the response of some Governments, including in awareness-raising activities, campaigns to improve detection and early diagnosis, and access to treatment.

The UN expert nevertheless regretted that too many States with high incidence rate and with discriminatory laws did not reply to her requests for visits or did not arrange the visit yet after several months of their acceptance of her request.

“States must abolish all discriminatory laws and implement the Principles and guidelines for the elimination of discrimination against persons affected by leprosy and their family members,” Cruz said. She also called for more inclusion of leprosy-affected women and children in the decision-making processes impacting their lives.

Alice Cruz is the first UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, appointed in November 2017 by the Human Rights Council. Ms. Cruz worked as External Professor at the Law School of University Andina Simón Bolívar – Ecuador and in several Portuguese universities as researcher on health and human rights, in particular leprosy. She participated in the elaboration of WHO Guidelines for Strengthening Participation of Persons Affected by Leprosy in Leprosy Services. She has researched and written on the subject of eliminating leprosy and the stigma attached to it and has interacted with various stakeholders, including persons affected by leprosy.

The Special Rapporteurs 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 from any government or organization and serve in their individual capacity.

Follow the Special Rapporteur on leprosy (personal pages) on Facebook and Twitter @srleprosy