Righting the Wrongs of Leprosy

TOKYO – At its 15th session, which ended at the beginning of October, the United Nations Human Rights Council adopted a resolution encouraging governments to eliminate discrimination against people affected by leprosy – and their family members. As the World Health Organization’s Goodwill Ambassador for Leprosy Elimination, I have long campaigned for this outcome.

Leprosy is one of the world’s oldest diseases. It has a physical dimension, but also social and psychological components. For much of its long history, there was no known cure. It was only in the latter part of the twentieth century that a truly effective chemotherapy became available. Since the introduction of multidrug therapy in the early 1980’s, roughly 16 million people around the world have been cured. In virtually every country in the world, leprosy is no longer regarded as a public-health problem.

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Caught early and addressed promptly, leprosy need leave no trace. Only when the disease goes untreated does the damage caused to the peripheral nerves lead to loss of sensation and invite ulceration and wounds. Unchecked, leprosy disfigures and can result in permanent disability.

Down the ages, the appearance of those with the disease, and the absence of a known cure, contributed to the fear that it caused – and thus to the stigmatization of its sufferers. Even today, many mistaken notions about leprosy persist. The stigma surrounding the disease remains hard to dispel, and results in discriminatory attitudes and practices that continue to blight the lives of millions of people.

But the facts about leprosy are hardly so odious. The disease is caused by a bacillus called Myobacterium leprae, first identified in 1873 by G.H. Armauer Hansen. Leprosy is thus an infectious disease; it is not hereditary, let alone a divine punishment. Transmission is believed to be airborne, through close and frequent contact with an infected, untreated person. But leprosy is very hard to develop; most people have a built-in immunity to it and have nothing to fear.

It is important to emphasize, too, that leprosy can be cured at any time. The first dose of MDT kills 99.9% of the bacteria that cause leprosy, rendering the person no longer infectious. But if treatment has been delayed, the patient may be left with recurring ulcers and permanent damage.

Last year, there were under 250,000 new cases of leprosy reported in the world, over half of them in India. Brazil and Indonesia also contribute a significant number of new cases. Compared to the numbers who fall ill with diseases such as HIV/AIDS, malaria, and tuberculosis, however, leprosy almost pales into insignificance.

But what is not acceptable is the way that people with leprosy, those cured of it, and even their family members continue to be discriminated against on the basis of fears, myths, and outdated notions about a disease that is today completely curable.

The Principles and Guidelines that were unanimously adopted by the Human Rights Council convey the nature and scale of the problem. In affirming the rights to which people affected by leprosy and their family members are entitled, the Principles and Guidelines reveal the extent of discrimination and the forms that it has taken.

For example, the Principles and Guidelines note that people affected by leprosy, including sufferers’ family members, are entitled to the same rights as everyone else with respect to marriage, family, and parenthood. So leprosy should not be grounds for denying anyone the right to marry, or for divorce; nor should it constitute grounds for separating a child from his or her parents.

People who have been infected with leprosy also are entitled to the same rights as everyone else with respect to full citizenship and obtaining identify documents. They have the right to serve the public, on an equal basis with others, including the right to stand for elections and to hold office at all levels of government.

Likewise, they have the right to work and be treated on an equal basis with others vis-à-vis recruitment, hiring, promotion, and salary. They are not to be denied admission to or expelled from schools or training programs on the grounds of leprosy.

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In other words, people should not be discriminated against on the grounds of having or having had leprosy – or, indeed, any disease.

The landmark resolution adopted by the UN Human Rights Council encourages governments to give due consideration to the Principles and Guidelines in formulating policies. I hope that governments will do more than that. I hope that they will take them to heart and address once and for all the long-standing injustices that for too long have pushed too many people with leprosy to the margins of society.