Published 21/12/2019

During a recent visit to the UK, we sat down with Ashim Chowla, the Chief Executive of Lepra Society, to discuss his life and career and the current challenges affecting the fight against leprosy. Ashim’s career has spanned over 25 years and included working with UNICEF, DFID, and a number of grassroots NGOs and People’s Movements.

Ashim overcame leprosy as a child and therefore has a unique point of view when discussing the disease and the challenges faced by those with it.

“As a small child, aged just 8 I discovered a patch of skin on my forearm which had no feeling. I was excited at having something ‘special’ that other children did not have, and began referring to the patch as my ‘magic patch’  being unaware of what the cause was”.

Following an examination of the skin and a nerve test by a skin specialist, Ashim was diagnosed with leprosy and began treatment. The treatment at the time involved taking a tablet a day for a year and applying oil. Following the diagnosis, Ashim’s mother swore him to secrecy and to not mention his ‘magic patch’ anymore.

Now fully cured, it was joining the Lepra Society that helped him realise the difficulties he could have faced, had he not been cured at such an early stage.

 “When I realised what might have been, it was like finding out a bridge you crossed earlier in the day has collapsed while people were using it, just as you had earlier. “

When discussing the work of the Lepra Society today, Ashim believes the biggest difficulties stem from the premature declaration of the elimination of leprosy in India in 2005. The declaration has led to a lack of investment into basic services and infrastructure in India to provide for those affected by the disease. It has also left the organisation struggling for resources, donations and grants to continue its vital work.

However, Lepra Society remains the leading leprosy organisation in India and undertakes essential work in areas most affected including Bihar, Odisha and Telegana. India has the highest burden of new cases of leprosy, with WHO figures currently showing this at around 61% of new cases.

This, coupled with technology use exploding means it is important Lepra is able to go to new areas and communities to help people get the correct information about leprosy and to ensure as many cases are found early as possible.

“It is important that we do not remain static. We move to where we are most needed, working with tribal populations and undertaking projects in hard to reach areas, providing support where the government does not. “

Lepra Society operates a system of active case finding which Ashim believes to be of vital importance. This allows people to be found and treated before they are affected by disabilities and helps to prevent transmission.

 “We run screenings in schools to help with the early detection of children who may have the disease. We provide multi-drug therapy free of charge for those we find who have leprosy and that support people to complete their treatment”.

Even though he was cured many years ago, there are still issues that Ashim faces linked to the disease on a daily basis, often based on people not understanding the facts around leprosy. On the Delhi Metro, for example, people who had been cured were required to carry their certificate in order to travel.

“Discrimination is one of the biggest issues people affected by leprosy face. Some people, including doctors, still react with alertness and anxiety when I say I once had leprosy.”

Living well after leprosy

While there are real discrimination and prejudice, Ashim feels that there are also many cases where people can live well after a leprosy diagnosis, with the correct treatment and support. One of his fondest memories since working with Lepra is what he calls ‘The Lepra Love Story’.

While working in a remote part of India, Ashim met a married couple who both suffered from leprosy and had developed disabilities. The couple came from different communities and were strongly advised against marrying, both due to their different backgrounds and their disabilities. The couple did marry and went on to have children. They also now own a small business, a rice mill, which is the only one in a 30 square kilometre area.

Ashim recalled, “I always remember the couple’s happiness together and of the rare occasion where love and leprosy have come together…” Stories like this strongly illustrate that people affected by leprosy are in fact people first, with the same hopes dreams and emotions as everyone else.

Ashim is especially proud of the work Lepra Society does towards women’s empowerment, giving strength to women and helping them face the challenges that a leprosy diagnosis can create. Through support groups, information campaigns and counselling, women and their families are given the facts about leprosy, support to complete the treatment and the opportunity to meet people who have also been affected.

Spreading the word

We spoke to Ashim as he was preparing to take part in an exciting project that will help people understand leprosy via a new exhibit at The Science Museum called “The Medicine Galleries”. This will launch in 2019 and footage of Ashim and Lepra’s CEO Geoff Prescott will be part of a special section on isolation caused by diseases such as leprosy. With the show expected to last for 25 years, this is an important chance to change future generation’s perception of the disease and to spread the message that we WILL beat leprosy…together!

You can find out more at https://www.sciencemuseum.org.uk/see-and-do/medicine-galleries

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