Leprosy is a chronic bacterial infection which affects nerves and can lead to disfigurement. The popular notion is that it’s a thing of the past in India. Facts indicate otherwise. Amrita Didyala speaks to Prasant Naik, chief executive of LEPRA Society, one of the biggest NGOs working for leprosy patients in India. He explains the current status in the backdrop of the leprosy fortnight that ends on February 14:
Despite concerted efforts since 1989 and India being able to bring down the prevalence of leprosy to 1 in a 10,000 population in 2005, India continues to contribute 60-65% of global new cases each year. While in 2005 the government said that leprosy has been eliminated in India and shifted its focus to other diseases like HIV and tuberculosis, leprosy has persisted in most of the states where it was existing.
The endemic states like Odisha, Chhattisgarh, Bihar, Jharkhand are still facing leprosy and sporadic cases are being found even in new states where we thought there were no cases. These include Gujarat, Tamil Nadu, Andhra Pradesh and Telangana. While globally around 2.3 lakh to 2.4 lakh cases are found annually, India accounts for around 1.5 lakh of these known cases. The understanding is that these numbers globally as well as in India are conservative estimates as many countries including India, have taken their eyes off leprosy.
Does it mean that leprosy is spreading to states where it was not found earlier?
While we are finding cases sporadically in newer states, it only means that leprosy has been there in these places all along and has never been eliminated. It is being found sporadically due to less focus on identifying cases.
What are the biggest challenges in controlling leprosy?
Asha workers and village level health workers are not really trained to identify new cases. Leprosy is no longer taught in the medical curriculum which means that medical staff in specialised hospitals and medical colleges don’t know what leprosy is or how to identify it. Most of the identification currently happens in referral centres by few old colleagues experienced in leprosy work, which is a fast disappearing tribe.
Since leprosy is a painless disease and usually starts with a skin patch, it usually requires self-identification. Sometimes, by the time the patient realises and goes to a hospital or a practitioner and it is then identified and referred to a referral centre, it goes beyond treatment. If identification is done within six months there is a chance of curing it completely and even rolling back the effects.
With the government following an integrated approach, from a standalone programme leprosy has now become one of the 9-10 diseases that it is focussing on with the same number of staff. Even the existing staff are not trained.
With incentive for identifying leprosy cases being as low as Rs 250 which is much lesser than that for TB and other diseases, healthcare workers are not motivated to identify these. Most of the reporting happens by chance.
Where has India scored well?
While India has done extremely well up to 2005, later we lost focus. As a result, leprosy has not been eliminated in any of the states but it’s a very flattened curve now.
One good thing that the government has done is to consider leprosy affected patients for pension, as rehabilitation is a lifelong thing once affected by leprosy. The pension varies between Rs 3,000 to Rs, 5,000, depending on states. Also, the government covers the cost of reconstructive surgeries for leprosy patients.
Stigma related to leprosy has reduced a lot due to disfigurement having been reduced with better drugs and treatment protocols. Stigma however is a big reason why self-reporting does not happen with families trying to stop it. We have a long way to go but we have come a long way.
What is the way forward?
First, we need to include leprosy in medical curriculum and physiotherapy courses. Also we need to teach in primary schools about leprosy to instill it into children that leprosy is curable and the least infectious of diseases. This will help address the problem of discrimination of patients.
We need to focus a lot on active case finding to identify patients in time and put a stop to transmission at the earliest.
Experts on reconstructive surgeries are very few and far between. These surgeries require specialised surgeons as well as specialised physiotherapists for post-operative care to help get some function of the limbs back. Even Lepra is suffering as most of our physiotherapists are very old and we are not able to find new ones.
With better earning options as a general physiotherapist, no one wants to get into leprosy physiotherapy. So there is a need to incentivise these professionals.
Views expressed above are the author’s own.
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