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 More than one third of households affected by the leprosy
complication Erythema Nodosum Leprosum (ENL) face "catastrophic"
costs exceeding 40 percent of their income, the study in the journal
PLOS Neglected Tropical Diseases said.
The study, based on interviews with 91 leprosy patients in Purulia,
West Bengal, said ENL, which causes swollen skin and inflamed
organs, costs patients one third of their income, compared with five
percent for people with leprosy alone.
India is home to 60 percent of the 200,000 new cases of leprosy
registered worldwide each year, and one in six leprosy patients are
at risk of developing ENL, according to the study.
It revealed the crippling financial burden placed upon some of the
"most marginalized people in Indian society", senior author
Professor Diana Lockwood said.
"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, a researcher from the London
School of Hygiene and Tropical Medicine, said.
Although the Indian government offers financial support for leprosy,
the schemes have a poor understanding of the problems.
"Some of the worst affected lack bank accounts and simply fall
through the cracks," she said.
LOSS OF INCOME
The study found that of the income lost, 65 percent was due to
reduced productivity and hiring extra labor to minimize farming
losses and 35 percent was the cost of private treatment.
As the financial costs of ENL are so high, better measures to
prevent the complication occurring could be highly cost-effective,
the study said.
"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," Lockwood said.
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"This can only provide a positive impact on the Indian economy.”
In response to the study, Swapan Kumar Jhariat, deputy director of
Health Services, Leprosy, in West Bengal, said there was no shortage
of funds from federal and state government to support families
affected by the disease.
Free rice is distributed to families with leprosy patients, and
relevant non governmental organizations are being funded based on
their work, Jhariat said.
"I think there is quite a big emphasis now to support leprosy
families."
Leprosy is a chronic infectious disease causing disfiguring skin
ulcers and nerve damage in the arms and legs. Over time, it can
cause inability to feel pain and the loss of parts of the
extremities.
In the past the disease, also known as Hansen's disease, was
regarded as incurable, and patients often became social outcasts,
but it can now be treated with antibiotics.
(Reporting by Kieran Guilbert; Additional reporting by Sujoy Dhar in
Kolkata; Editing by Tim Pearce)
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