Researchers from the London School of Hygiene & Tropical Medicine 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.
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.
The study is published in PLOS Neglected Tropical Diseases.
Analysis of the questionnaire findings show that “indirect costs” such as loss of earnings, reduction in productivity and recruitment of extra labour 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 totalled more than 40% of household income.
Leprosy is a disease affecting poor and marginalised communities in tropical countries throughout the world, with India home to 60% of the 200,000 new cases of leprosy registered worldwide annually.
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.
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.
However, the authors acknowledge that further work is needed to test the findings on a larger scale and in the community rather than just a hospital setting to provide further evidence of the economic burden of ENL.
Senior author Professor Diana Lockwood, from the London School of Hygiene & Tropical Medicine, said:
“This is the first study to take a patient-centred approach and it has revealed the crippling financial burden placed upon some of the most marginalised people in Indian society.
“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.
“If the skills of leprosy workers are improved to recognise 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.”
David Chandler, Kristian Hansen, Bhabananda Mahato, Joydeepa Darlong, Annamma John, Diana Lockwood: Household Costs of Leprosy Reactions (ENL) in Rural India. PLoS Neglected Tropical Diseases. DOI:10.1371/journal.pntd.0003431
Image: Leprosy skin swellings Credit: David Chandler
London School of Hygiene & Tropical Medicine