26 January 2023 · Alice Cruz, UN Special Rapporteur

Children affected by leprosy remain invisible, forgotten, and dehumanised: UN expert

GENEVA (26 January 2023) – Children and teenagers affected by leprosy (also known as Hansen’s disease) remain hidden, invisible, forgotten and dehumanised, a UN expert said today. Ahead of World Leprosy Day, the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, Alice Cruz, issued the following statement:

“Leprosy is mostly diagnosed in children aged between 10 and 14 years due to its long incubation period following exposure. Cases among younger children have been observed and, more rarely, cases in infants have also been reported.

Since the creation of my mandate in 2017, I have received numerous reports of children affected by leprosy being expelled from schools, separated from other students, rejected by their peers, bullied, verbally and physically abused by family members, neighbours, and schoolteachers. Due to a lack of access to medical care and stigmatisation, informal segregation in “leprosy colonies” still happens in some cases, even if it is no longer implemented as State policy.

I received considerable testimonies about persons diagnosed with leprosy during their childhood and who attempted to commit suicide as adults. Stigmatisation has long-lasting impacts over an entire lifetime. Girls affected by leprosy are especially vulnerable to various forms of discrimination and violence.

Detection of leprosy cases was significantly impacted by the Covid-19 pandemic when the global detection rate for new child cases dropped from 7.9 to 4.5 per million child population. This is alarming because children affected by leprosy are a strong indicator of the extent of ongoing transmission. For leprosy, under-detection leads to an increase in the rate of transmission and in the number of new cases among children, who may also be more likely to be diagnosed with long-term physical impairments.

I urge States and other stakeholders, including the health industry, to ensure child-friendly, gender-sensitive, disability-inclusive services, including health and child protection, as well as appropriate medical expertise and public policies to treat leprosy in children. Children affected by leprosy must be recognized as rights-holders and their meaningful participation in relevant policy-making processes must be duly enabled.”

This statement was endorsed by the Committee on the Rights of the Child (CRC) and the United Nations Children’s Fund (UNICEF).

Ms Alice Cruz is the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members. She was 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.