Study reveals crippling financial burden faced by leprosy-affected

More than 2,00,000 new cases of leprosy are registered worldwide annually, with 60% in India.

leprosy-main 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 2,00,000 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 marginalised people in society.

Published on Thursday in PLOS Neglected Tropical Diseases — a peer-reviewed open access journal 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 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%) 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 minimise the costs.

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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.”

Anuradha Mascarenhas

Anuradha Mascarenhas is a Senior Editor at The Indian Express, based in Pune. With a career spanning three decades, she is one of the most respected voices in Indian journalism regarding healthcare, science and environment and research developments. She also takes a keen interest in covering women's issues . Professional Background Education: A gold medalist in Communication and Journalism from Savitribai Phule Pune University and a Master’s degree in Literature. Author: She authored the biography At The Wheel Of Research, which chronicles the life and work of Dr. Soumya Swaminathan, the former Chief Scientist at the WHO. Key Focus: She combines scientific accuracy with storytelling, translating complex medical research into compelling public and human-interest narratives. Awards and Recognition Anuradha has won several awards including the Press Council of India's national award for excellence in journalism under the gender based reporting category in 2019 and the Laadli Media award (gender sensitivity -2024). A recipient of the Lokmat journalism award (gender category-2022), she was also shortlisted for the RedInk awards for excellence in journalism-2021. Her debut book At The Wheel Of Research, an exclusive biography of Dr Soumya Swaminathan the inaugural chief scientist of World Health Organisation was also nominated in the Popular Choice Category of JK Paper AUTHER awards. She has also secured competitive fellowships including the Laadli Media Fellowship (2022), the Survivors Against TB – New Research in TB Media Fellowship (2023) and is part of the prestigious 2025 India Cohort of the WomenLift Health Leadership Journey.” Recent Notable Articles (Late 2025) 1. Cancer & Specialized Medical Care "Tata Memorial finds way to kill drug-resistant cancer cells" (Nov 26, 2025): Reporting on a breakthrough for triple-negative breast cancer, one of the most aggressive forms of the disease. Discipline, diet and purpose; How a 97-year-old professor defies ageing'' (Nov 15, 2025) Report about Prof Gururaj Mutalik, the first Head of Department at Pune's B J Government Medical College who at 97 credits his longevity to healthy habits and a strong sense of purpose. 2. Environmental Health (The "Breathless Pune" Series) Long-term exposure even to 'moderate' air leads to chronic heart, lung, kidney issues" (Nov 26, 2025): Part of an investigative series highlighting that even "safe" pollution levels are damaging to vital organs. "For every 10 µg/m3 increase in PM2.5 level, there was 6-8% jump in medicine sales" (Nov 23, 2025): Using commercial data to prove the direct link between air quality and respiratory illnesses in Pune. 3. Lifestyle & Wellness News "They didn't let cancer, diabetes and heart disease stop them from travelling" (Dec 22, 2025): A collaborative piece featuring survivors who share practical tips for traveling with chronic conditions. At 17, his BP shot up to 200/120 mmHG; Lancet study flags why child and teen hypertension doubled between 2000 and 2020'' (Nov 12,2025)--A report that focusses on 17-year-old-boy's hypertensive crisis and reflects the rising global trend of high blood pressure among children and adolescents. 4. Scientific Recognition & Infrastructure For promoting sci-comm, gender diversity: IUCAA woman prof highlighted in Nature" (Nov 25, 2025): Covering the global recognition of Indian women scientists in gender studies and physics. Pune researchers find a spiral galaxy like the Milky Way from early universe'' (December 3, 2025)- A report on how Indian researchers discovered a massive galaxy that existed when the universe was just 1.5 billion years old , one of the earliest to have been observed so far. Signature Beat: Health, Science & Women in Leadership Anuradha is known for her COVID-19 reportage, where she was one of the first journalists to provide detailed insights into the Covishield and Covaxin trials. She has a dedicated interest in gender diversity in health and science, often profiling women researchers who are breaking the "leaky pipeline" in STEM fields. Her writing style is scrupulous, often featuring interviews with top-tier scientists and health experts from various institutions. ... Read More

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