The study conducted to reveal the economic burden of a common complication of the disease in the country reported that households affected by leprosy are being pushed further into poverty as a result of loss of earnings and treatment costs.
More than 2,00,000 new cases of leprosy are registered worldwide annually, with 60% in India. Senior author Professor Diana Lockwood, London School of Hygiene and Tropical Medicine, said, "this was the first study to take a patient-centered approach and it has revealed the crippling financial burden placed upon some of the most marginalised people in society."
Researchers found that Erythema Nodosum Leprosum (ENL), which causes tender swellings of skin and inflammation of organs, cost patients in India almost 30% of income, compared with 5% for people with leprosy alone.
A total of 91 patients, 53 cases with ENL and 38 controls with leprosy but not ENL were interviewed at The Leprosy Mission Home and Hospital, in Purulia, West Bengal, about their condition, income, costs and steps taken to cover the expenses.
Analysis of the questionnaire findings show that 'indirect costs' such as loss of earnings, reduction in productivity and recruitment of extra labour accounted for 65% of the costs while 35% resulted from 'direct' costs of treatment in the private sector.
It also reveals that more than 38% of the households affected by leprosy and ENL endured 'catastrophic health expenditure', where costs totalled more than 40% of household income.
The researchers suggest the study provides a strong economic argument for control of leprosy and investment in more resources dedicated to the prevention of ENL, as well as concerted efforts to minimise the costs.
"This is a problem for the whole of the country. Families are sucked into a downward spiral of poverty, which has a knock on effect for health systems in India. The Indian Government does offer financial support for leprosy, but schemes have poor understanding of the problems. Some of the worst-affected lack bank accounts and simply fall through the cracks" Lockwood said.