Time to end leprosy stigma, says new UN human rights expert

World Leprosy Day
28 January 2018

GENEVA (25 January 2018) – People affected by leprosy continue to suffer discrimination and lack of access to medical care, a newly appointed UN human rights expert specialising in the disease has warned, citing latest statistics that show over 200,000 new cases a year.

Leprosy remains a neglected disease, with the highest number of cases in India, Brazil and Indonesia. The World Health Organization has identified 22 priority countries where action is needed, including Bangladesh, the Democratic Republic of the Congo, Ethiopia, Madagascar, Mozambique, Myanmar, Nepal, Nigeria and the Philippines.

Figures for 2016 show that 214,783 new cases of leprosy were reported, including 12,437 where people had suffered serious disabilities.

“This level of serious disability is alarming and completely unnecessary,” said Special Rapporteur Alice Cruz, in a statement to mark World Leprosy Day on 28 January.

“No one with leprosy needs to be left with disabilities. The disease can be easily cured with multidrug therapy if it is detected and treated early enough. Left untreated, it can cause severe immunological reactions that lead to disability and chronic pain.

“The fact that this is still happening in 2018 shows that there are delays in diagnosis and lack of access to high-quality treatment. Children are among those suffering unnecessarily.

“Tackling social vulnerability is key to reducing the transmission and prevalence of leprosy,” she added.

Cruz said discrimination was perpetuating people’s unnecessary suffering and it was essential to tackle the root causes.

“Too many people with leprosy remain trapped in a never-ending cycle of discrimination and disability,” she said. “On the surface, discrimination is linked with old stigmas that still lead to segregation and human rights violations of people affected by leprosy. This misconception must be tackled with information and education.

“However, this stigma is only the tip of the iceberg in terms of why people continue to be denied their more basic human rights. The root causes of leprosy-related discrimination are the same as those that make some groups more vulnerable to structural and multiple discrimination than others, such as discrimination based on gender, ethnic or racial group, religious background, age, disability, migration or poverty. Not only individuals affected suffer stigma and discrimination, but so do their families, particularly in leprosy colonies.

“In countries where leprosy is endemic, it is associated with social inequities and mainly affects poorer communities. In other countries, new challenges arise such as the increase of cases among foreign-born people and the discrimination associated with it,” the Special Rapporteur said.

“States must address the vicious circle of discrimination, exclusion and disability. They must act on their human rights obligations to tackle leprosy-related discrimination and stigma, including by ending discriminatory laws on segregation, immigration, marriage, vote, public transportation, employment and housing which remain on the statute books in some countries.” 

The UN expert praised the ongoing work by the worldwide leprosy community to raise public awareness and press for action by States.

ENDS

Note to editors: Leprosy, also known as Hansen’s disease, is a chronic infectious disease caused by the bacillus Mycobacterium leprae that mainly affects the skin and peripheral nerves. Leprosy has a long incubation period. The disease is not highly infectious and most persons who are in contact with leprosy do not contract it. Leprosy can be cured with multidrug therapy (MDT) which is available free of charge worldwide. However, if not early detected and treated, leprosy can cause severe immunological reactions that lead to disability, such as neuropathy, disfigurement, blindness, loss of sensation and limbs and chronic pain.

Ms. Alice Cruz (Portugal) was appointed in November 2017 as the first UN Special Rapporteur on the elimination of discrimination of persons affected by leprosy and their family members. Ms. Cruz is an External Professor at the Law School of University Andina Simón Bolívar in Ecuador. Ms. Cruz has conducted fieldwork in Portugal, Brazil, South Africa, Bolivia and Ecuador, and has researched and written on the subject of eliminating leprosy and the stigma attached to it. She has interacted with various stakeholders including public health professionals, medical doctors, civil society as well as people 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.

For more information on the activities planned to celebrate World Leprosy Day on 28 January 2018, please see http://ohchr.org/EN/Issues/Leprosy/Pages/LeprosyIndex.aspx

For inquiries and media requests, please contact: Marina Narvaez (+41-229179615/mnarvaez@ohchr.org)

For media inquiries related to other UN independent experts please contact:
Jeremy Laurence – (+ 41 22 917 9383 / jlaurence@ohchr.org) 

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