Summit to tackle stigma leprosy sufferers endure
Event to be held in India, which accounts for nearly 60 per cent of reported cases
MUMBAI // Vivekanand Onekar was trying to write on the blackboard in his classroom when he noticed that he could not grip the chalk. His fingers no longer moved as they should.
Four months later, the 51-yearold teacher from Mumbai was undergoing intensive treatment with steroids and antibiotics as doctors tried to save his hands from the ravages of leprosy.
“I’m worried about deformity and how it would affect my work and life,” he said.
Mr Onekar is more fortunate than many people infected with leprosy in India, which accounts for about 60 per cent of the world’s 214,000 reported cases, according to the World Health Organisation. Often, treatment is started too late to save sufferers from the deformities it causes, either because they have not sought help early enough or because of misdiagnosis.
The result is social ostracism and an inability to find work because of the crippling effects of the disease or employer prejudice.
“Stigma forces leprosy-affected people to be dependent on donations and begging for survival,” said Vineeta Shanker, the executive director of Sasakawa India Leprosy Foundation, which works to increase social acceptance of people cured of leprosy and helps them to find employment.
“There is an urgent need to create mass awareness to ensure that this age- old stigma, for which there is no scientific basis, is eradicated.”
The foundation has organised a two-day global awareness-raising summit in New Delhi that begins today to coincide with World Leprosy Day. The goal is to find ways to end the stigma and discrimination faced by those who have or have had leprosy. Among those attending are India’s health minister, Jagat Prakash Nadda, and Thawar Chand Gehlot, the minister of social justice and empowerment, as well as politicians from other countries, including the Philippines and Bangladesh.
Leprosy is a bacterial infection that causes nerve damage and sores, although it can take five years for some symptoms to appear. It is an airborne disease and infectious, but it is not as contagious as many believe and can be treated with multidrug therapy, which is available free of charge.
Yet because of the stigma associated with leprosy, victims can suffer rejection even by their families and struggle to find work.
In 2005, “manipulation of statistics and data” by official underreporting of the disease resulted in India falsely declaring it had eliminated leprosy. That misrepresentation has been detrimental to raising awareness about the disease, experts said.
There are government efforts under way, including surveys to find leprosy sufferers and a vaccine trial. But more needs to be done, including raising awareness about the disease and educating health professionals to help early detection, said S Kingsley, head of knowledge man- agement at Alert India, an NGO dedicated to leprosy education, treatment and rehabilitation.
He said many cases of leprosy went unreported in India.
“We have found that in urban areas the number of people with leprosy is three times more than reported and in rural areas it is more than five times higher,” Mr Kingsley said.
The Bombay Leprosy Project is regularly inundated with patients undergoing treatment.
“There’s a lot of apprehension and stigma,” said Dr V V Pai, director of the NGO, as he examined 28-year-old Muzam- mil Qureshi who had several sores on his body. Some of the patients spilling out of the doctor’s packed office had travelled hundred of kilometres. “We need to have campaigns to raise awareness, particularly among the lower socio-economic categories.”
In the early 1980s, India had about four million cases of leprosy. Although numbers declined, Dr Pai said he had seen no decline in the past 10 years. He is also seeing more child cases.
In Trombay, a naval district on the outskirts of Mumbai, a cluster of ramshackle homes are, in effect, an unofficial leper colony with about 100 residents. Among them is Anu Maruti Kadam, 50. She was about 11 when she learnt she had leprosy. Her parents took her to the colony 30 years ago but after a few visits, they stopped all contact. Although she has been cured, the limited movement in her clawed, partly paralysed hands means she is unable to work. Two years ago, her left leg was amputated at the knee. Her husband, who was also cured of leprosy, has a job as a watchman. The couple have no children and are free to go where they wish, but they rarely leave the colony.
‘ Stigma forces leprosy-affected people to be dependent on donations and begging Vineeta Shanker Sasakawa India Leprosy Foundation executive director