Neglected tropical diseases

Leprosy: lessons to be learnt in overcoming discrimination and stigmatization

8 November 2016 | Seoul | New Delhi | Geneva –– The World Health Organization (WHO) has welcomed an initiative by countries to repeal antiquated laws that for centuries allowed discrimination against people affected by leprosy (Hansen’s disease). Although the disease has been eliminated as a public health problem worldwide, discrimination and stigmatization pose huge barriers to equitable treatment and social inclusion.

“It is important we learn lessons from this disease,” said Dr Erwin Cooreman, Team Leader of WHO’s Global Leprosy Programme. “No other disease has been more stigmatized at the personal and community level, including discrimination sanctioned by religious authorities. We now know that many of these practices were unjustified.”

The Second World Forum on Hansen’s Disease held in Seoul, Republic of Korea on 1–3 November 2016, adopted a Declaration that focuses on the dignity of affected people. Participants pleaded that all should learn from past errors and appreciate the historical heritage of leprosy. The Forum supported the removal of legal and social discrimination and called on countries to provide comprehensive physical and psychological care to patients during and after treatment as highlighted in WHO’s Global Leprosy Strategy 2016–2020. It also discussed the need to preserve the heritage of leprosy and proposed the conversion of some former leprosaria and hospitals into museums to remind people of past humiliation and unfair practices.

“There are opportunities to make use of visible practices and through this to prevent adverse practices in other health or social contexts. The idea is to emphasize injustices that have occurred through forceful isolation and segregation. Leprosy can provide a learning lesson for other diseases that are characterized by discrimination and stigmatization” said Dr Cooreman.

The human rights of people affected by leprosy featured prominently at the Forum and examples of State failures and corrective measures taken by many countries were highlighted. While the Forum noted the impact of resolutions of the United Nations General Assembly and of the United Nations Commission on Human Rights, it recommended the promotion of non-abusive language on leprosy.

Status of the disease in 2015

In 2015, a total of 211 973 new cases were reported from 108 countries worldwide; most cases were detected in a few countries. India has 60% of the global case load, followed by Brazil and Indonesia. Some 95% of all cases occur in 14 countries1, each reporting 1000 or more cases. Some smaller countries report detection rates of more than 10-fold the global average.

More than 14 000 (or 8%) of new cases have visible deformities, meaning that many patients are presenting late for diagnosis and may already have spread the infection to others, while the nearly 19 000 (11%) children in whom leprosy is diagnosed indicate that active transmission in communities is ongoing.

In most cases, leprosy is curable and many national programmes report cure rates exceeding 90%.

1 Brazil, Bangladesh, Democratic Republic of the Congo, Ethiopia, India, Indonesia, Madagascar, Mozambique, Myanmar, Nepal, Nigeria, Philippines, Sri Lanka and the United Republic of Tanzania.

Ashok Moloo
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