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

28 January 2018

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

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

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