Households affected by leprosy face being pushed further into poverty as a result of loss of earnings and treatment costs, according to the first ever study of the economic burden of a common complication of the disease in the country.
More than 200,000 new cases of leprosy are registered worldwide annually, with 60% in India. Senior author Professor Diana Lockwood, from the London School of Hygiene and Tropical Medicine who spent many years studying leprosy in India told The Indian Express that 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 marginalized people in Indian society.
Published on Thursday in PLOS Neglected Tropical Diseases – a peer reviewed open access jourbal devoted to prevention, treatment and control of neglected tropical diseases, researchers found that Erythema Nodosum Leprosum (ENL), which causes tender swellings of skin and inflammation of organs, cost patients in India almost a third (30%) of income, compared with 5% for people with leprosy alone.
Leprosy reactions occur in up to 50% of patients with multibacillary leprosy and cause nerve damage and disability. Household costs resulted predominantly from the impact of (ENL) a common complication of leprosy and an important cause of nerve damage and disability. In most cases, ENL causes chronic or recurrent episodes of ill-health over many years. In this study, we show that having a family member affected by ENL places considerable financial burden on households in rural India.
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 labor accounted for the majority (65%) of the costs while the remaining (35%) resulted from “direct” costs of treatment in the private sector.
It also reveals that more than a third (38%, n=20) of the households affected by leprosy and ENL endured “catastrophic health expenditure”, where costs totaled 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 minimize the costs.
As the financial effects of ENL are so high, they say increased measures to prevent the complication occurring could prove to be highly cost-effective. “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,” Lockwood said.
“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. “If the skills of leprosy workers are improved to recognize ENL, and efforts are made to shorten these episodes, we would expect to see an increase in productivity. This can only provide positive impact on the Indian economy.”