‘I am only halfway along this journey’: Yohei Sasakawa

* Half the world’s leprosy cases are still detected in India

* Yohei Sasakawa has helped leprosy endemic countries across the world access free treatment and challenge the stigma associated with the disease

While people commonly think of leprosy as a disfiguring disease from biblical times, an estimated three million people continue to live with leprosy-induced disability. The world sees more than 200,000 new cases each year, over half of which are in India.

Yohei Sasakawa, an 81-year-old Japanese philanthropic activist, had always been determined to carry on the work begun by his father, the politician and philanthropist Ryoichi Sasakawa. As chairman of the Nippon Foundation, started by his father, he pledged $50 million to the World Health Organization (WHO) in 1995 to provide multi-drug therapy (MDT) free of cost to patients in leprosy-endemic nations worldwide. The MDT combines two or more anti-leprosy drugs to prevent drug-resistant strains. Today, his efforts have helped several countries, including India, access free treatment easily, as well as challenge the stigma associated with the disease.

In his debut book, No Matter Where the Journey Takes Me: One Man’s Quest for a Leprosy-Free World, published by Hurst and translated from Japanese by Rei Muroji, Sasakawa talks about his work with leprosy eradication and why India holds a special place in his heart.

No Matter Where the Journey Takes Me: One Man’s Quest for a Leprosy-Free World Yohei Sasakawa; Rei Muroji (tr)HurstNon-fictionKindle edition₹2,649

When he arrived in New Delhi for the India launch of the book on anti-leprosy day (January 30), he promised free hard copies as a special gesture exclusive to India. The copies can be obtained by contacting the Sasakawa India Leprosy Foundation. Edited excerpts from an e-mail interview with BL ink :

Your book mentions how you saw the first leprosy patient in 1965 when you accompanied your father on a trip to Korea and visited a local hospital. How did this experience affect you?

I’m ashamed to say that until I saw the actual circumstances at this leprosy hospital, I hadn’t known that there were people in society who had been abandoned by their families because of this illness and were leading such miserable lives. When I saw my father embrace the patients, shed tears and pray for them, I decided that I should carry on his work. It determined the course of my life. From that moment on, I began to live my life with a consciousness of death. I resolved that I would have no regrets nor would I reach my end wishing I had done more.

How prevalent was leprosy in Japan, and what steps were taken to cure it?

Under Japan’s Leprosy Prevention Law, patients were isolated in 13 national sanatoriums. The government issued an apology for this unjust policy in 2001, and Japan sees almost no new leprosy cases these days.

The Leprosy Prevention Law wasn’t abolished until 1996. Today, the total number of residents at these 13 sanatoriums is around 1,200 and their average age is around 86.

Is India seeing a resurgence of the disease?

India eliminated leprosy as a public health problem in 2005. At the time, there were many who thought it would be impossible for India to eliminate leprosy, so it was seen as a miraculous achievement. Currently, there is an ambitious programme to reduce the number of leprosy cases to zero under Prime Minister Narendra Modi. Sometimes, this means that case numbers temporarily increase as more hidden cases are uncovered, but this is not a cause for pessimism as there will eventually be a significant drop in numbers. In any case, someone diagnosed with leprosy will be cured within a year with MDT. To me, an increase in case numbers is a sign that a leprosy programme is actively identifying them. In recent years, India has been doing a lot of good work, and is currently one of the most active countries in tackling leprosy.

There is still stigma associated with the disease. Has Japan been able to overcome it?

It is true that leprosy has attracted severe discrimination since the time of the Old Testament. Although leprosy is referred to as a Neglected Tropical Disease (NTD), there isn’t any other disease that is accompanied by such stigma. And it is an unfortunate fact that countries still have laws that discriminate on the grounds of leprosy.... deny one access to public places... make leprosy grounds for divorce. Japan has worked hard to eliminate discrimination through raising awareness. For example, the idea that leprosy is divine punishment, the result of ancestral wrongdoing or that it runs in the blood quietly permeated Japanese society until around 10 years ago, I would say. I think that such notions have largely faded, but I can’t say they have disappeared altogether.

Have you accomplished your mission? Is there still work left to do?

There’s a Japanese saying that loosely translates as “On a journey of 100 miles, 90 miles is only halfway”. My activities have not only been about seeing that people are cured of the disease, but also involve a humanitarian effort to eliminate the prejudice and discrimination that persons affected by leprosy and their families face. Fortunately, the UN General Assembly adopted a resolution in 2010 with guidelines for the elimination of discrimination. It was a landmark resolution, and adopted unanimously. But I am still only halfway along this journey.

I will continue to work for the eradication of the disease and the complete elimination of stigma and discrimination for as long as I live.

Shriya Mohan

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