Mr. Sasakawa (far left) joins Dr. Plianbangchang, WHO- SE Asian Regional Director; Mr. V Narsappa, Chairman of National Forum of India; and Dr. P. Rao from WHO’s Global Leprosy Programme a press conference for the International Leprosy Summit.
As chairman of the Nippon Foundation, Japan’s largest charitable foundation, Yōhei Sasakawa is one of the most powerful men in Japan. But he does not fill his time with glamorous galas and high powered meetings. Instead, he has dedicated his life to helping those with a disease so isolating that it’s very name now metonymically stands for discrimination: leprosy.
Sasakawa’s involvement with leprosy began in childhood when his father took him to visit a leprosy hospital in South Korea. The experience was so shocking and unforgettable that he decided dedicate his life to the elimination of leprosy.
Fast forward to the present day and Sasakawa has made good on his pledge. As chairman of the Nippon Foundation, he has overseen the donation of millions of dollars to the World Health Organization (WHO) earmarked for leprosy medication (known as Multidrug Therapy or MDT) and other leprosy elimination programs.
But his involvement goes beyond signing checks. He has become the World Health Organization’s (WHO) Goodwill Ambassador for Leprosy Elimination. As such he has travelled to a staggering number of leprosy-endemic countries where he goes and speaks with real people affected by the disease. “I make every effort to go out into the field and see the situation for myself,” he said, “Sometimes I will travel for several days to visit a remote area, where I tell people directly that the leprosy is curable and that treatment is available for free.”
A nurse tends to a patient at the Leprosy Mission Hospital in New Delhi, India
He has also attacked the issue from a political angle. Despite being curable and not particularly contagious (contrary to popular lore), leprosy is still associated with a significant stigma. In an effort to ensure that those affected by leprosy live a dignified life, Sasakawa worked with the UN Commission on Human Rights (now the Human Rights Council) and pushed for the UN General Assembly to pass a resolution in 2010 to end stigma and discrimination against persons affected by leprosy and their family members.
I had the good fortune to meet Mr. Sasakawa at the Global Leprosy Program’s International Summit in Bangkok, Thailand in July. It was at this meeting that he announced that the Nippon Foundation would donate an additional 20 million dollars toward leprosy elimination.
Despite his power and prestige he was remarkably approachable. He was so humble that he insisted that we move a poster because it featured him too prominently and he felt that it detracted from the leprosy affected persons. He even listened patiently (through his translator) as I babbled about my passion for global health and asked for an interview. The following are excerpts (emphasis added):
Why should people care about leprosy—a disease which only affects a small proportion of the population globally?
A patient with a visible (Grade 2) deformity at the Leprosy Mission Hospital in New Delhi, India.
We are still taking about some 230,000 new cases a year. Moreover..in recent years new case numbers have ceased to decline…When you think about the life of each individual in that context, then it’s a heavy number.
What’s more, the problem of discrimination continues even after they are cured of the disease, so they have to cope with that on top of any residual disability..When you consider this discrimination casts a shadow over their families, too, then we are talking about tens of millions of people affected by the disease.
Your foundation generously pledged 20 million dollars at the International Leprosy Summit. How would you like to see that money used?
Leprosy Colony in India
Compared to before most countries eliminated leprosy as a public health problem, I think the situation today is much more challenging. Leprosy tends to be concentrated in hard-to-serve areas such as urban slums, border regions and areas populated by ethnic minorities. Plus, cases are widely scattered. It’s also a fact that governments have fewer resources to devote to leprosy. Among the health ministers I met in Geneva at the World Health Assembly in May this year where those who said that people involved in leprosy were letting their guard drop… and that it was becoming harder to get results.
So, to deal with these challenges, I would like to see the 20 million dollars used to strengthen [WHO’s] Global Leprosy Program and enhance the activities of the various stakeholders.
As the WHO’s Goodwill Ambassador, you have made extensive visits to leprosy endemic countries. What is a special memory or a poignant moment from those travels that has that has stuck with you?
One I especially remember came at the end of 2005. This was the first national assembly of people affected by leprosy in India. India contributes over half the new cases of leprosy in the world, yet there had never been an opportunity for people affected by leprosy to come together from different parts of the country…By uniting, they gain the strength to make society hear them.
In answer to my call, almost 600 people affected by leprosy gathered from all over India. Up until then, I had met many who had opted to remain silent rather than speak out for their human rights and invite further discrimination. But the people who gathered in Delhi summoned the courage to demand and end to discrimination and the restoration of their dignity and debated the specifics of how this was to be done. I felt a big hole had been punched in the towering wall that separates them from mainstream society.
Me and V. Narsappa- current chairman of National Forum of India for Leprosy Affected Persons
Thanks to this national conference, a nationwide organization of people affected by leprosy called the National Forum—now National Forum India—was established. I regard its members as my brothers and sisters and we have shared many joys and sorrows dating back from before it was founded, right up to the present day.
What words of advice do you have for people that want to be involved in global health issues?
Let’s just say I would like to see many people get involved. A problem may not easily be solved, but don’t give up if you fail. You need to tackle it with strong conviction and courage. …My watchwords are “passion, perseverance and persistence.” I regard this as my life’s work, and my intention is to keep going without giving up.