Thursday, February 9, 2012

Learning about Leprosy

On Sunday, January 29, LEPRA India organized a walk for World Leprosy Day to fight stigma and discrimination.  I was honored to be invited as chief guest and pleased to see how many Hyderabadis turned out for the walk, including students, activists and persons affected by leprosy. 
Before the march, Dr. Ranganadha Rao, LEPRA’s chief executive briefed me about leprosy in India, and I was disturbed by what I learned.  Leprosy is a treatable, curable disease, and there’s no need for newly-infected individuals to experience the kind of disabilities that we all associate with leprosy as long as they are diagnosed early and begin multi-drug therapy.  Unfortunately, though, stigma and misinformation discourage patients from seeking medical help early, resulting in late diagnoses and unnecessary suffering. 
I was struck by some sad parallels between leprosy and HIV/AIDS.  Both diseases were at one time considered incurable and consequently extremely feared.  Lack of accurate information about disease transmission in both cases led many members of the public to shun those affected by AIDS and leprosy.  In the late 20th century, science prevailed over superstition at least enough to fight off proposals to quarantine AIDS patients, but for many years leprosy sufferers were forcibly segregated from society.  Even today, stigma is so great that many leprosy survivors who bear the disfiguring traces of the disease choose to live in leprosy colonies because of discrimination and ostracism in the wider world.  To some extent it’s a vicious cycle: misinformation, stigma, and discrimination cause irrational fear that contributes to delay in diagnosis.  Delayed diagnosis results in irreversible damage so that those cured of the disease remain marked by it, and suffer discrimination.
The facts are indisputable.  Untreated leprosy is a communicable disease caused by a bacteria, but it’s very hard to catch, and most people (about 95%) have natural immunity.  Within a very short time of beginning treatment, patients are no longer infectious, and in less than a year, they’re cured.  If you meet someone who bears the signs of leprosy, you can be 100% sure that they have been diagnosed, treated and cured—you run no risk of catching the disease from them.

Given these facts, discrimination and stigma are cruel, unfair and just plain inexcusable.  But many Indian laws continue to discriminate against leprosy patients.  For example in many states, including Andhra Pradesh, they’re prohibited from running for local office.  Leprosy patients aren’t allowed to drive according to the Motor Vehicle Act of 1939, which still applies.  LEPRA is launching a signature campaign to try to raise awareness and combat these pernicious practices.  The idea is “each one, teach one,” and this blog is one of the ways I’m trying to do my part.  I hope you will too.

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