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New study reveals crippling financial burden of leprosy

Households affected by face being pushed further into poverty as a result of loss of earnings and treatment costs, according to the first ever study of the of a common complication of the disease.

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 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 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 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.

Leprosy is a disease affecting poor and marginalized 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 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.

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-centered approach and it has revealed the crippling placed upon some of the most marginalized 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 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.”

Source

Household Costs of Leprosy Reactions (ENL) in Rural India, Chandler DJ, Hansen KS, Mahato B, Darlong J, John A, et al. PLoS Negl Trop Dis, doi:10.1371/journal.pntd.0003431, published 15 January 2015.

The London School of Hygiene and Tropical Medicine, contributed approximately £1000 in support of the work. The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of the final manuscript.