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.
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 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 financial burden 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."
###
FINANCIAL DISCLOSURE: The London School of Hygiene and Tropical Medicine, http://www.lshtm.ac.uk/, 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.
PLEASE ADD THIS LINK TO THE PUBLISHED ARTICLE IN ONLINE VERSIONS OF YOUR REPORT: http://dx.PLOS.org/10.1371/journal.pntd.0003431
(link will go live upon embargo lift)
PRESS-ONLY PDF: http://www.plos.org/wp-content/uploads/2015/01/pntd.0003431.pdf
CITATION: Chandler DJ, Hansen KS, Mahato B, Darlong J, John A, et al. (2015) Household Costs of Leprosy Reactions (ENL) in Rural India. PLoS Negl Trop Dis 9(1): e3431.doi:10.1371/journal.pntd.0003431
CONTACT: Katie Steels, Katie.Steels@lshtm.ac.uk
About PLOS Neglected Tropical Diseases
PLOS Neglected Tropical Diseases is a peer-reviewed, open-access journal devoted to the pathology, epidemiology, prevention, treatment, and control of the neglected tropical diseases, as well as public policy relevant to this group of diseases. All works published in PLOS Neglected Tropical Diseases are open access, which means that everything is immediately and freely available subject only to the condition that the original authorship and source are properly attributed. The Public Library of Science uses the Creative Commons Attribution License, and copyright is retained by the authors.
About the Public Library of Science
The Public Library of Science (PLOS) is a non-profit organization of scientists and physicians committed to making the world's scientific and medical literature a freely available public resource. For more information, visit http://www.plos.org.
Media Permissions
PLOS Journals publish under a Creative Commons Attribution License , which permits free reuse of all materials published with the article, so long as the work is cited (e.g., Kaltenbach LS et al. (2007) Huntington Interacting Proteins Are Genetic Modifiers of Neurodegeneration. PLOS Genet 3(5): e82. doi:10.1371/journal.pgen.0030082). No prior permission is required from the authors or publisher. For queries about the license, please contact the relative journal contact indicated here: http://www.plos.org/journals/embargopolicy.php
Journal
PLoS Neglected Tropical Diseases