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Health

Stigma cripples India's fight against leprosy

Eight years ago, India declared leprosy an eliminated disease. But experts who counter the claim say the official figures are faulty, and that the number of leprosy cases is actually on the rise.

According to a target set by the World Health Organization (WHO), a country can officially announce it has eliminated leprosy when there is less than one case for every 10,000 people - a prevalence rate (PR) of less than one.

When effective Multi Drug Therapy for leprosy began in early 1980s, the PR in India was close to 58.

Every year, International Leprosy Day coincides with the closest Sunday to the death of Mohandas Karamchand Gandhi, or Mahatma Gandhi, which happened on January 30, 1948, in memory of his close work with the infected.

A sustained fight against the disease for over two decades had seemed to have paid off; in 2005, the Indian government announced that the PR of leprosy in the country had dropped to 0.95 and that the disease was thus eliminated.

Balakrishna Bhudaji (L) is examined by a doctor from the Bombay Leprosy Project (BLP) during a field visit to Chincvali village, some 100 kms from Mumbai on May 15, 2009. (Photo: PAL PILLAI/AFP/Getty Images)

Many leprosy patients remain hidden from society

According to the latest Indian health ministry report, 127,000 new leprosy cases were reported in the country in 2010-11, and among all new cases reported worldwide, more than half were in India.

Although the ministry report noted that India's National Leprosy Eradication Programme (NLEP) has had success fighting the disease, many experts are urging caution.

Hollow claim

Arunesh Chakraborty, organising secretary of the non-government organisation Mahakuma Kustha Nibarani Samiti, which, until 2005, ran a leprosy hospital in the West Midnapur district of West Bengal state, said the government's claim that the illness had been eradicated was "hollow."

"In a country of 1.22 billion people, the government states there are 127,000 new leprosy cases annually. A simple calculation shows that the national level PR of the disease is up to 1.04 - over 1 - again," Chakraborty, who worked with leprosy sufferers for more than three decades, told DW.

"That means, following the WHO standard, India should announce that leprosy has not been completely eliminated just yet."

New Delhi, however, has yet not declared that the national level PR of leprosy is once again over 1.

Hidden cases

A leprosy patient looks up for alms from the residents of a building as he passes by pulling his mother, who also suffers from leprosy, on a cart 03 July 1999 in Calcutta. (Photo: ARKO DATTA/AFP/Getty Images)

Leprosy patients are often pushed out of society

India conducted its last countrywide door-to-door leprosy survey more than a decade ago. The statistics provided by government agencies or the WHO on new cases are based on data provided by only selected hospitals or clinics.

Many experts agree that a number of private doctors and clinics do not provide data on leprosy patients to health authorities, so the real number cannot show up in statistics.

"Many leprosy patients maintain secrecy about their disease because of the social stigma attached to it. They avoid visiting government or other NLEP-affiliated hospitals where they fear people would know about their disease. They go to private doctors instead,” dermatologist Dr. Manas Biswas in West Bengal told DW

Expert Chakraborty went so far as to say that it was possible that due to the inaccurate statistics, "leprosy in India has never dropped to the level specified by the WHO."

Health experts suggest that the government should take strategic steps to uncover the hidden leprosy population.

Stigma

But Dr. Helen Roberts, medical superintendent of the Premananda Memorial Leprosy Hospital in Kolkata, believes that the stigma attached to the disease is "too terrible." That, she said, made it difficult for any surveyor to track hidden patients.

Indian nuns and orphans offer prayers in front of a portrait of the late Mother Teresa during the commemoration of her 12th death anniversary at Nirmala Sishu Bhavan in Ahmedabad on September 5, 2009. (Photo: SAM PANTHAKY/AFP/GettyImages)

Mother Teresa did a lot for people infected with leprosy

"There have been complaints that even health workers discriminate against leprosy patients. Sometimes, this discrimination prevents people from seeking medical help," said Roberts, who has been treating poor and homeless leprosy patients for 27 years.

People affected with leprosy also face discrimination from their families and as a result often lose their homes and social and support networks.

Anadi Rana's wife threw him out of their home in an upmarket area after he contracted leprosy 12 years ago. Now he lives in a lepers' colony in West Midnapur.

"When we found out that my fingers were disfigured because of leprosy, my wife and eldest son asked me to leave home. I ran a successful grocery store. I was reluctant to move out. They virtually forced me out of home," 52-year-old Rana, who now begs for a living, told DW.

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