There Are 1000 Leper Colonies In “Leprosy-Free” India

From a distance, the nondescript colony, Duttanagar, tucked away in the quiet seams of Mumbai’s eastern suburbs looks no different from any other chawl in the city. Nearly 220 families live here. Women rise early to fill water and men queue outside the community bathrooms.

But the halting gates of this area tell a different story.

Duttanagar is a leper colony at the far end of Trombay, just 15 kms from the heart of the city’s Dadar railway station.

In 2013, there were more than 2.3 lakh new leprosy cases in the world, more than half of them in India. And yet, in 2005, the country officially “eliminated” leprosy, abandoning its battle against the disease, under the pretext that it had less than 1 case in 10,000 people.

The Leper Colonies in “Leprosy-free” India

A couple of months back I met Asheema, when she was just 10 years old, at a public health clinic in Mumbai’s Wadala. She was wearing a bright yellow dress. The doctor asked her to close her eyes and then tickled her face with a nylon bristle.

She knew this game. Each time she would giggle and point her fingers to the place being tickled. But when a large part of her neck was touched, she didn’t move.

The skin patch is not eczema. The little girl had leprosy and the diagnosis would change her life forever.

This disease had caused nerve damage and created what’s called the “anaesthetic skin” on her neck. The affected patch cannot detect heat, cold, or pain. There’s a serious risk of limb damage. Repeated injury can mean people with leprosy lose fingers and toes.

Asheema’s mother started grieving for her, “as if she were already dead”. Though the leprosy numbers have dwindled, awareness has increased, medical science has progressed – the discrimination and ostracism is still as rampant.

Soon after the diagnosis, Asheema’s family was forced to move out of their home in Sion to the Duttanagar leper colony.

We suspect huge number of cases go unreported because of the stigma attached to the disease. Leprosy is a painless disease with a long incubation period. By the time the symptoms become visible, the disease has progressed enough to cause irreversible nerve damage, which results in deformity. Since surveillance was stopped after 2005, more and more people are being diagnosed at advanced stages of the disease, when the visible deformities appear.

Dr Ganapati, Bombay Leprosy Project

The labyrinth of lanes and bye-lanes leading to the Duttanagar colony serve to distance the colony members from the mainstream society, buffering them from a hostile world.

Numbers Suppressed

Currently there are no reliable estimates as to how many people are afflicted with leprosy in India. The last count was done in 2013 where 1.35 lakh fresh cases were detected in the country.

But doctors and NGOs on the ground say even these estimates are too rosy. By 2005 India had declared that there were fewer than one case of leprosy per 10,000 people.

“It was a mistake,” admits Pradip Gaikwad, a doctor who retired last year as a joint director of Maharashtra’s leprosy programme, which has recorded the third-highest number of cases, after the programmes of Uttar Pradesh and Bihar.

After that spell of false relief, other diseases took priority in public-health circles; door-to-door visits in remote villages were called off; and medical staff were reassigned. With villagers having to report themselves at clinics on a voluntary basis, new cases of leprosy went under-reported. The antibiotics needed to cure it should be supplied free of cost and made abundantly available, but with the shortage of funds, their distribution was hit too.

I feel up-to half of India’s leprosy cases are not being reported. The true count of new leprosy cases that cropped up in India between 2013 and 2014 could greatly exceed the official count.

Dr Pradip Gaikwad, Former Joint Director, Maharashtra Leprosy Programme

The big fear among health workers associated with leprosy is that the vociferous talk of eradication gives the states an incentive to under-count new leprosy cases every year. The 1,35,000 new cases a year keeps the country safely in the eliminated leprosy category (i.e. less than 1 case per 10,000 population).

There is, therefore, no incentive to find new cases.