Human Rights and Leprosy

PRAGUE – At the end of last year, the United Nations General Assembly unanimously adopted a resolution approving principles and guidelines to end discrimination against people affected by leprosy and their family members.

This resolution marked the culmination of several years of lobbying of UN institutions by groups and individuals devoted to focusing attention on an overlooked human rights issue: the social discrimination suffered by people diagnosed with leprosy. Indeed, the discrimination usually continues even after they are cured, blighting not only their lives, but the lives of their family members.

For much of its long history, leprosy was feared as an incurable, disfiguring disease. People who came down with it were ejected from their communities. They often ended up in isolated villages or remote islands, condemned by society to spend the rest of their days as social outcasts.

Today, leprosy is cured by multi-drug therapy (MDT), a course of treatment that kills, after the first dose alone, 99.9% of the bacteria that cause leprosy. Since MDT was introduced in the early 1980’s, some 16 million people have been cured worldwide. Yet, even after a person is free of the disease, the stigma attached to leprosy has the potential to disrupt people’s lives in ways that no drug can cure.

Educational opportunities, job prospects, married life, family relationships, and community participation are all potentially threatened by leprosy. In some countries, discrimination is sanctioned by law, with leprosy treated as legitimate grounds for divorce, for example. Even members of the medical profession have been known to discriminate against patients with leprosy.

Many of the problems faced by people affected by leprosy today stem from society’s ignorance about the disease. It is mistakenly assumed to be highly contagious, and therefore sufferers are to be avoided at all costs. Moreover, deeply entrenched notions that leprosy is divine punishment destroy the reputation and self-esteem of those thus diagnosed and cast a shadow over their families.

The principles and guidelines endorsed by the UN resolution go to the heart of the issue. They state that no one should be discriminated against on the grounds of having or having had leprosy. They call on governments to abolish discriminatory legislation and remove discriminatory language from official publications; to provide the same range and quality of health care to persons affected by leprosy as to those with other diseases; and to promote social inclusion.

But the UN resolution is, unfortunately, not a binding document. It can only recommend that states and civil society observe the principles and guidelines that it puts forward. It is very important, therefore, that this resolution is not simply filed away and forgotten. It must be used by states as a roadmap to bring about an end to the unjust and intolerable discrimination that those with leprosy face.

We call on states to use the opportunity afforded by the UN’s historic resolution to work toward a world where people affected by leprosy and their family members can live with dignity and play their part in the life of the community. It is time to bring an end to this gross violation of human rights. Such a world is long overdue.

H.R.H. El Hassan Bin Talal is Chairman of the West Asia-North Africa Forum; Frederik Willem de Klerk is a Nobel Peace Prize laureate and former President of South Africa; André Glucksmann is a philosopher and essayist; Vartan Gregorian is President of the Carnegie Corporation; Václav Havel was President of the Czech Republic; Michael Novak is a Roman Catholic theologian; Yohei Sasakawa is Chairman of The Nippon Foundation and WHO Goodwill Ambassador for Leprosy Elimination; Karel Schwarzenberg is Foreign Minister of the Czech Republic; Desmond Tutu is Archbishop Emeritus of Cape Town and a Nobel Peace Prize laureate; Grigory Yavlinsky is Chairman of the Russian United Democratic Party Yabloko. All signatories are members of the Shared Concern Initiative.

Copyright: Project Syndicate, 2011.
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