Just 15 kilometers from the heart of Mumbai’s Dadar railway station, at the seams of Trombay is a nondescript colony - Duttanagar.

There is nothing unusual about it. More than 200 families live here. Women come out of their brick houses at the crack of dawn to stock up water and men queue outside community bathrooms. From a distance, it looks like any other chawl tucked in the Maximum city, only much cleaner.

Duttanagar is a leper colony at the extreme end of Trombay, just 15 kilometers from the heart of Mumbai’s Dadar station. Over 200 families disfigured by this savage disease, ostracized by the society, call this chawl their home.

In 2005, the World Health Organisation (WHO) declared India ‘leprosy-free’. Yet in 2016, the year which marks Mahatma Gandhi’s 150th birth anniversary, there are more than 1000 such leper colonies in the country, India accounts for more than 60 percent of the world’s “new leprosy cases”.

Digest that?

Conditions in these leper colonies differ drastically. (Photo: Nikita Mishra/The Quint)
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The Modi government has announced a door-to-door inspection in endemic pockets to identify new leprosy cases, it is proud of the world’s first made in India anti-leprosy vaccine which will be rolled out soon- but we ain’t celebrating. Here’s why:

India Has the Highest Burden Of Leprosy In the World

(Photo: Nikita Mishra/The Quint)
  • 95 percent humans have a natural immunity towards leprosy. Scientists call it the ‘least contagious disease known to man’ - yet people infected face stigma and lifelong rejection.
  • India detects more than one lakh new cases annually.
  • The bacterial disease is preventable, easily treatable with medication 99 percent of the times.
    The tragedy, however, is that leprosy does not come with fever or pain. And since the government stopped its active detection programs in 2005, people don’t report it till later stages when disfiguration starts.

Why Hasn’t WHO Stripped India of its Leprosy-Free Status Then?

The catch is in the numbers.

Even though the new cases are rising, the government somehow manages to ‘suppress’ the total figure to less than one in 10,000. Maybe that is why country-wide leprosy figures haven’t been released since 2013, and in that fiscal year, more than 1.35 lakh fresh cases were diagnosed in India.

Sources in the Bombay Leprosy Project, one of the oldest foundations treating leprosy in Maharashtra, say, “even this data is too good to be true - actual figures are 3 to 4 times higher.”

NGOs say their biggest fear is the pressure to maintain the leprosy-free status. (Photo: Nikita Mishra/The Quint)

NGOs say their biggest fear is the pressure to maintain the leprosy-free status. It gives states the license to under-report and purposely miss out on new cases. 1.35 lakh new cases per year is a safe figure - it keeps us safely in the eliminated leprosy category. So where is the incentive to find new cases?

Former Director of Maharashtra’s leprosy programme, Pradip Gaikwad, who retired last year feels getting the leprosy-free status was a ‘big mistake’.

Once a disease is ‘eliminated’ in records, it is no longer considered a public health problem. Funds were diverted to other headline grabbing diseases, research was halted, door-to-door inspection which caught maximum cases in the early stages was stopped. People were expected to voluntarily come up and report cases. The medicine supply which should’ve been readily available was hit by shortage of funds.

I feel up to half of India’s leprosy cases are not being reported. The true count could greatly exceed the official count.
Dr Pradip Gaikwad, Former Joint Director, Maharashtra Leprosy Programme

A Race Against Time- Once Easily Treatable, Leprosy is Going the Tuberculosis Way

The vaccine will be rolled out in five districts of Bihar and Gujarat, which have the highest leprosy infections. (Photo: Nikita Mishra/The Quint)

For almost three decades, leprosy was easily cured with a single dose antibiotic. The bacteria evolved and just like TB, multi-drug therapy was introduced. In 98 percent of the cases, the disease ceased to be contagious in five to six months.

From 2011, the World Health Organisation has noted consistent cases of drug resistance even with the newer multi-drug therapy. There are absolutely no new antibiotics in the pipeline.

The WHO’s global target of 2020 to eradicate the scourge of leprosy from the world could be affected by India’s complacency.

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