But what matters is that we keep moving toward it, says Goodwill Ambassador.

Heading in the right direction: astride a mockup of the leprosy “motorcycle”.

Beginning when he was appointed Special Ambassador to the Global Alliance for the Elimination of Leprosy in 2001 and subsequently Goodwill Ambassador for Leprosy Elimination in 2004, Yohei Sasakawa has traveled the world raising awareness of leprosy.

But as chairman of The Nippon Foundation, which has supported the WHO’s Global Leprosy Programme since 1975, his commitment to leprosy goes back even further.

To mark the 100th issue of his newsletter, we invited the Goodwill Ambassador to share his thoughts on advocacy, the empowerment of persons affected by leprosy, dealing with world leaders and what drives him on.

We are in the midst of the coronavirus pandemic. What should we be doing?

There is only so much we can do at a time like this. But it’s an opportunity to take stock and plan ahead. The important thing is to stay motivated and be ready to play an active role again when the situation returns to normal.　However, we need to cooperate to ensure that persons affected by leprosy are still able to receive treatment and maintain their livelihoods to the extent possible, even during the pandemic.

You’re now 81. You spend several months of the year traveling overseas, often to remote areas. Any thoughts of slowing down?

Is it appropriate to judge someone by their age?  There are people in their 20s and 30s who don’t act young. Physically, I am 81; but mentally, I feel like a youth. I still have hopes and dreams, and my passion for leprosy work remains undiminished while I still have a mission to complete. So, if I add my physical age to my mental age and divide by two, I’d say I’m still reasonably young.

Taking part in a Sparsh leprosy awareness campaign in Jharkhand, India, 2018.

What impact has this work had on your life?

I have only one life and deciding what I should accomplish with it stems from an unforgettable experience I had in my younger days, accompanying my father to a leprosy hospital in South Korea. Seeing him tour the wards, hugging each patient, encouraging them and telling them to have hope, that’s when I thought that I should take up this work and carry on from my father. It was a gut feeling. Just how big an influence it has been on my life, and how much I have been enriched, is something I am now appreciating.

In Japan, there is a saying that knowledge comes only through practice.

You often say that the solutions are found alongside the problems, and frequently travel to the field. Can you share any examples where this has made a difference?

In Japan, there is a saying that knowledge comes only through practice and that a true leader acts on his words. Hence while I respect reports, I don’t rely on them alone. I want to see the situation with my own eyes.

For example, when we decided to fund the free distribution of multidrug therapy (MDT) around the world for five years from 1995, I felt it was necessary to check that it was reaching the patients. Thankfully, in most cases it was. But in some countries, the drugs only reached as far as the health ministry and sometimes not even that far. So, there were frequent occasions when I had to point this out and make sure MDT was delivered to the patients.

Examining supplies of multidrug therapy at Hombo public hospital in Anjouan, Comoros, in 2018.

Part of your work as Goodwill Ambassador involves high-level advocacy. You are often seen with world leaders. Do you know how many you have met?

Fortunately, my secretary keeps a record. In terms of current or former presidents and prime ministers, I’m told the number comes to 458. If you include health ministers and other ministers, deputy ministers, governors and such, then it runs into thousands. But bear in mind that I was already doing this in my role with The Nippon Foundation, long before I became Goodwill Ambassador. I have made a total of 909 trips abroad for leprosy, totaling 3,354 days; the total number of countries visited is 121. In other words, I have spent around 10 years outside Japan on this work. All of which is to say, I don’t think anyone else has traveled abroad to this extent for leprosy.

I’ve had leaders tell me my visit made them aware of leprosy in their country.

What does it take to get government leaders interested in and committed to doing more for leprosy?

First you have to explain the misunderstandings that surround the disease and the tragedies this has led to. Leprosy has been around since the days of the Old Testament and, in my opinion, is the first example of people discriminating against other people on the grounds of disease. Since the Middle Ages and into the modern era, it has mostly affected the poor. They have been ostracized by society because of their illness and their human rights trampled on.

There is a lot of ignorance concerning leprosy. I’ve had leaders tell me that it was only because of my visit that they became aware that leprosy existed in their country. That’s why I make these visits—to create awareness. When I meet with a leader, the health minister and other relevant ministers are usually present. If a country’s chief executive gives assurances about leprosy and a budget is allocated, then the health ministry has to act. In any country battling diseases such as HIV, malaria and TB, a disease with a comparatively small number of cases such as leprosy is at the bottom of its list of priorities. To change that, it is necessary to persuade the people at the top.

Drawing attention to leprosy as a human rights issue: Yohei Sasakawa addresses the 60th session of the UN Human Rights Commission, March 2004.

You have long championed the empowerment of persons affected by leprosy and invite them to accompany you when you meet with political leaders. How do you see their role?

You will have heard me talk about leprosy in terms of a motorcycle. The front wheel represents curing the disease and the rear wheel represents restoring human rights. In other words, we need to eliminate the discrimination as well as the disease to realize a society in which people can live normally. For thousands of years, people affected by leprosy have been oppressed by society due to misconceptions and lack of knowledge about the disease. They still face discrimination, even now leprosy is curable. By approaching the international community about this I think I was able to create an opportunity for leprosy to be taken up as a human rights issue. Eventually this led 193 countries to unanimously adopt a resolution on elimination of discrimination against persons affected by leprosy and their family members at the UN General Assembly in December 2010, accompanied by Principles and Guidelines.

Discriminatory laws and attitudes remain, however. For that to change, persons affected by leprosy must speak out, as they are the ones impacted by this. They are entitled to live in dignity, earn a living and contribute to society—which can include helping to identify new cases of the disease. I am always telling them: ‘Join together, speak out and make your voices heard.’

So, what I am saying is, it is important to focus on solving the social problem of discrimination at the same time as tackling the medical issue of leprosy. When both wheels of the motorcycle are turning at the same time, then we are heading in the direction of a real solution. I’ve always wanted to lead the way on that.

Calling on Prime Minister Meles Zenawi of Ethiopia, accompanied by Birke Nigatu, chairman of the Ethiopian National Association of Ex-Leprosy Patients, February 2006.

What’s needed to bring about social change?

You can’t move people with conferences and papers alone. The way they think is influenced by their surroundings and how they live, and each country has its history and culture. Even couples may have different ideas about leprosy. That’s why it’s important to communicate correct information about the disease and work steadily to fix discriminatory laws and regulations. You just have to keep at it.

At the time of the Beijing Olympics, persons affected by leprosy were going to be barred from entering China. For my part, I wrote to the International Olympic Committee as well as the Chinese leadership and the mayor of Beijing, and in two weeks the matter was resolved.

I have also had occasion to write to Pope Francis, who has 1.2 billion followers worldwide, following a number of unfortunate statements on his part. I conveyed to him that leprosy is a curable disease; it is not hereditary, nor is it a divine punishment, so please do not use it as a metaphor for something bad. Subsequently there was an international symposium on Hansen’s disease at the Vatican, co-sponsored by The Nippon Foundation, which conveyed these points to the Catholic faithful.

What’s necessary is for everyone to keep speaking out about the issues. Discussing something in an air-conditioned room and writing a report doesn’t solve anything. It’s important to get people involved, go and see the situation for oneself, and talk to as many people as possible.

Attending a branch meeting of the Movement for the Reintegration of Persons Affected by Hansen’s Disease (MORHAN), Pernambuco, Brazil, 2015.

What encounters have made the biggest impression on you?

It’s the ones with people who have overcome the disease and are living strongly. But many others still lead very difficult lives. Existing on the margins of society, some believe that begging is the only way of life open to them because of leprosy.

I think of a man I met on Biwak Island in Indonesia, who was abandoned by his relatives and lived alone. They brought him food from time to time, but on days when they didn’t, he just stayed in his hut and went hungry. Or a man in India living in isolation on the edge of a village; he had a wife, who brought him food, but he couldn’t live with her because the villagers wouldn’t allow it. There are still many people like this in the world that we don’t know about. It weighs heavily on me that we can’t find them all. We have to do more.

Meeting a man abandoned by his family on a visit to Biwak Island, Indonesia, in 2014. Subsequently, the man was able to resume his life as a fisherman.

The term ‘elimination’ has attracted criticism over the years for giving the impression that leprosy has disappeared after countries announced they have ‘eliminated’ leprosy. What do you say to that?

The elimination target was “elimination as a public health problem” or a prevalence of less than one case per 10,000 population. It was only ever a milestone, not the end goal. But it is true that “as a public health problem” has tended to be forgotten. That said, it is not enough just to say, “Let’s all work together to get rid of this disease.” There needs to be a specific numerical target for everyone to pursue together. That’s why I welcome the fact that we have a new goal, which is “Zero Leprosy.”

What’s needed is for all of us to be moving in the same direction.

You have already mentioned the motorcycle. Is the destination in sight?

We’re not there yet. What matters is to keep heading toward it, not how far away it is. In a tunnel, if you keep going you will eventually reach the other end. In that sense, I think it’s more important to work together in the same direction to achieve our goal, rather than calculating the remaining distance.

Take India, where the prime minister has set a goal of zero leprosy cases by 2030 and has shown a strong commitment to vanquishing leprosy. Experts question whether this is possible by 2030. I would argue that what is important is to make progress toward this goal. The results will follow. 

It’s the same when talking about discrimination and how to resolve it. It’s a problem in people’s minds. Perspectives, impressions and prejudices about leprosy vary from person to person. What’s needed is for all of us to be moving in the same direction.

“Join together, speak out and make your voices heard”: scene from India’s first-ever national conference of persons affected by leprosy, New Delhi, December 2005, held under the theme of “Integration and Empowerment”.

What else should we be thinking about as we go forward?

We need to create as many allies as we can. It’s an unfortunate fact, but the world just tends to follow trends. When the environment became a hot topic, 12,000 gathered in Rio de Janeiro for the Earth Summit in 1992. Of course, the environment remains an important issue, and is still being debated, but not with the energy we saw back then. Now we have coronavirus—a problem some might say is as big as the plague was for humanity.

As new challenges emerge, one after another, it’s easy to forget issues like leprosy, where the actual numbers are small. But when it comes to the gravity of the discrimination that persons affected by leprosy face, I find it totally unacceptable that human beings—the only living creatures blessed with
reason—are capable of such irrational behavior. In that sense, leprosy carries a lot of symbolic weight and resolving the issues surrounding it should be of paramount importance to humanity.

Did you think that the “last mile” in leprosy would take this long?

I don’t know that this will end in my lifetime. I will continue to fight against the disease, and the stigma and discrimination persons affected by leprosy still face, to the extent that I can. But if there are still issues remaining, then I want to find a way for the next generation to take them on.

NO.100 PDF

IN THIS ISSUE
Message:
My Journey Continues
Special Interview I:
Our Goal Is Not Yet in Sight,  Yohei Sasakawa, Goodwill Ambassador
Timeline:
Reviewing developments in leprosy over the course of 100 issues of the newsletter
Special Interview II:
Encouraging Signs, Alice Cruz, UN Special Rapporteur on leprosy
News: 
Leprosy and COVID-19
From the Editor