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‘Leprosy has to be tackled as a human rights issue’, says chair of Japan’s largest charitable foundation

2 Jul 2008

Joao Souza

Source: The Nippon Foundation (see original article)

TropIKA: How did you first become aware of the hardship faced by those affected by leprosy and at what point did you decide to devote your life to this cause and, in a broader sense, to social justice?

Yohei Sasakawa: I became involved with leprosy in 1965, when I accompanied my father, Ryoichi Sasakawa, to South Korea to visit a leprosy sanatorium. My father was the first chairman of what is today The Nippon Foundation. Under his direction, the Foundation had begun to support medical activities for leprosy patients. In 1967, for example, it endowed a leprosy hospital in Agra, India.

The reason for my father’s interest in leprosy traces back to an incident in his youth, when a girl who lived nearby suddenly disappeared. Later, he found out that she had　been diagnosed with leprosy. In those days, it was mandatory in Japan that anyone diagnosed with the disease be confined to a leprosy sanatorium. Quite apart from the consequences for the individuals thus incarcerated, their families also endured severe social discrimination. This opened my father’s eyes to the issues surrounding leprosy.

For my part, accompanying my father to the sanatorium in Korea, meeting leprosy patients for the first time, and seeing their miserable plight had a big impact on me. When I was a boy, I survived the fire-bombing of Tokyo during World War II. In a single night, some 100,000 people were killed, but my mother and I somehow survived. As the years passed, I felt that I had been spared for a purpose. So I determined that I would devote myself to ridding the world of injustice and improving people’s lives. After the encounter with leprosy patients in Korea, I turned this pledge into fighting Hansen’s disease.

TropIKA: At the beginning of the 1980s, leprosy was endemic in over 120 countries. Since the advent of multidrug therapy (MDT), some 16 million people have been cured, eliminating the disease as a public health problem in all but two countries. What part has The Nippon Foundation played in this?

Yohei Sasakawa: As I mentioned, The Nippon Foundation began its involvement with leprosy in the 1960s. In 1975, the WHO made eliminating leprosy one of its major priorities. The Nippon Foundation became a partner in this effort, and supported anti-leprosy activities around the world. One year earlier, in 1974, the Sasakawa Memorial Health Foundation was established, with the principal objective of eliminating leprosy. It both funded anti-leprosy activities, and also engaged in them, in countries where leprosy was still a public health problem. In the 1980s, when leprosy became a curable disease with the advent of multidrug therapy, this had a major impact on efforts to eliminate the disease. It led WHO to announce in 1991 that it had set a target of eliminating leprosy as a public health problem by the end of the 20th century.

In 1994 I announced that in order to realize the early elimination of leprosy, The Nippon Foundation would pay for the free distribution of MDT throughout the world for a five-year period starting from 1995. This gave a real boost to the leprosy elimination effort, and with free drug distribution, the number of cases came down dramatically. From 2000, the Novartis Foundation for Sustainable Development took over the free distribution of drugs, and this, together with The Nippon Foundation’s financial support to WHO for elimination activities, has markedly strengthened the system of cooperation and support. To date, we have given 36.5 billion yen to anti-leprosy activities, including 24 billion yen channelled through WHO. Today, just two countries have yet to reach the goal of eliminating leprosy as a public health problem – Brazil and Nepal. However, some 250,000 new cases of leprosy are still being diagnosed annually in the world, and it is essential to sustain control activities. Since I was appointed WHO Goodwill Ambassador for Leprosy Elimination in 2001, I have spent approximately one third of each year visiting countries that have yet to achieve the WHO elimination target. I meet with government leaders, media, health workers and people affected by leprosy, passing on correct information about leprosy, and supporting efforts to provide necessary medical services.

TropIKA: You sometimes quote Stanley Stein when he said: ‘The ravages of the stigma of this disease are as great as the ravages of the germ.’ Could you explain who he was and what pivotal issues related to leprosy this quote raises?

Yohei Sasakawa: Stanley Stein was a leprosy patient and resident of Carville, Louisiana, the only leprosy sanatorium on the US mainland, between 1931 and 1967. A journalist, he began a newspaper at Carville called The Star. This had a big influence on leprosy patients around the world. Subsequently, he published a book about his experiences called Alone No Longer. This is not just a valuable record of life in the sanatorium, but also an insightful reflection on the discriminatory and sub-human treatment of people affected by the disease. Stein’s words tell us just how deep-rooted the stigma and discrimination against people affected by leprosy in the US was, and the degree to which their human rights were infringed upon, and demonstrates the importance of this issue in the context of social justice.

TropIKA: For centuries, mankind treated leprosy by isolating those with the disease. Many leprosaria were situated on islands. What are your thoughts about the remaining leprosaria worldwide?

Yohei Sasakawa: There is a history of expelling people with leprosy from society. Anyone diagnosed with the disease ceased to exist as far as society was concerned. They were even abandoned by their own families. They ended up on remote islands or deep in the mountains. Such islands were regarded as islands of despair. Yet what we are now seeing is how islands of despair are becoming islands of hope. Culion in the Philippines is a good example. Thanks to the efforts of residents, the island has been transformed into an open society and is attracting newcomers from the outside. In the past, it was felt that the only way to deal with people with leprosy was to isolate them. Today there is absolutely no reason to isolate people with leprosy, which is completely curable and only mildly contagious. It is my hope therefore that all remaining leprosy sanatoria and colonies in the world will be opened up to the outside. For example, in India there are at least 700 or so self-settled colonies. Originally located some distance away from towns, they are gradually being absorbed with the expansion of urban areas, yet still barriers remain between their residents and the general population. We have to do what we can to remove the barriers as quickly as we can. I believe it is essential that people affected by leprosy are integrated into general society, and that their right to live like anyone else is restored to them. For this, we have to change society, and social attitudes.

TropIKA: The 2008 Sasakawa Health Prize was given to MORHAN (Movement for the Reintegration of People Affected by Hansen’s Disease), an NGO headquartered in Rio de Janeiro, Brazil. Why was it chosen for the award?

Yohei Sasakawa: Those of us involved in the fight against leprosy were extremely proud that MORHAN was selected by WHO to receive this prize. MORHAN is one of Brazil’s leading NGOs in the leprosy field. Its main focus is on the social reintegration of people affected by leprosy and their families, the opening up of sanatoria, the dispelling of misunderstandings and fears about the disease, and the eradication of discrimination.

For the past four years, The Nippon Foundation has been supporting a free telephone counselling service for people affected by leprosy run by MORHAN. Although telephone counselling is a modest undertaking, it plays an extremely important role in terms of empowerment. The Telehansen service takes calls from people affected by leprosy who still face stigma and discrimination, provides information about the disease, addresses callers’ concerns and prevents helps to prevent suicides. Where necessary, it also arranges for treatment. The wonderful thing about MORHAN is that it has branches all over Brazil, and that people affected by leprosy themselves are carrying out activities nationwide, side by side with volunteers from the general public.

After India, Brazil has the largest number of leprosy patients, but unlike India it has yet to reach WHO’s elimination target. MORHAN’s activities are very significant because they are promoting early diagnosis. Our foundation would not be able to achieve anything without the support of NGOs such as MORHAN that have local roots.

TropIKA: You have increasingly focused your attention on the human rights aspect of leprosy and developed a three-fold strategy. Could you please describe this for us?

Yohei Sasakawa: We have made great progress in eliminating the disease as a medical problem, but, the problem of discrimination is deep-rooted and of long-standing. A person who is infected by leprosy is excluded from society, and that state of affairs continues even after he or she is cured. Including those who came down with the disease prior to the development of MDT, there are millions of people affected by leprosy and their families suffering the effects of discrimination. My strategy to counter this discrimination consists of three parts.

1) Lobbying the United Nations – I approached the Office of the UN High Commissioner for Human Rights in July 2003, and requested that the issue be taken up by the then UN Human Rights Commission. In August of the same year, I presented the issue to the members of its Sub-Commission on the promotion and protection of human rights, marking the first time that leprosy had been discussed as a human rights issue at the UN.

In 2004, the Sub-Commission adopted a resolution and appointed a Special Rapporteur to explore the human rights dimension of leprosy. Following this development, the Sub-Commission adopted resolutions calling upon national governments to remedy any discriminatory practices against, and to protect the human rights of, people affected by leprosy. However, none of these resolutions was binding.

With the disbandment of the Human Rights Commission and its Sub-Commission, which have been replaced by UN Human Rights Council, a new strategy was called for. Responding to my appeal, the Japanese Government decided to take up the issue of discrimination against people affected by leprosy and submitted a resolution to the Council, co-sponsored by 59 countries, that was unanimously approved in June 2008 by all member states. My hope is that this will lead to a survey that will produce basic rules and guidelines for ending discrimination and that ultimately we will see a resolution passed by the UN General Assembly.

2) Launching global appeals – In recent years, on the last Sunday in January, which is World Leprosy Day, I have launched a global appeal to end stigma and discrimination against people affected by leprosy. This annual appeal, which is targeted at international organizations, governments, and the public at large, is aimed at spreading the message that leprosy is curable, treatment is free, and social discrimination has no place, and at underscoring the importance of ending society’s misperceptions of the disease. The first global appeal was launched in Delhi in 2006, and signed by twelve world figures, among them five Nobel Prize-winners, including former US President Jimmy Carter, the Dalai Lama and Desmond Tutu. The following year, 16 people affected by leprosy from 13 countries signed the appeal, which was launched in Manila. And in January 2008, at the Royal Society of Medicine in London, nine leading NGOs, including Amnesty International, signed the 3rd Global Appeal. I intend to continue with these appeals until the UN General Assembly passes a resolution, and in every country around the world there are rules and guidelines for ending discrimination toward people affected by leprosy.

3) Empowering people affected by leprosy to speak out – In India, one of the countries that have achieved the elimination goal but which still accounts for over half the world’s cases of leprosy, I called for and was successful in organizing a National Forum of, by, and for people affected by leprosy, creating a platform for their voices to be heard for the first time. I also established the Sasakawa-India Leprosy Foundation, for the purpose of supporting activities to promote social integration, including microfinance and scholarship funds. This kind of bottom-up activity involving people affected by leprosy themselves is extremely important. For that reason we have also supported IDEA (Integration, Dignity and Economic Advancement), which is an organization of people affected by leprosy. IDEA members are standing up, speaking out and developing into a global network for sensitizing society to the disease and actively working to restore their human rights and challenge stigma. I am delighted to see what they are doing.

TropIKA: Do you believe someday mankind will achieve not only the elimination of leprosy as a public health problem in every country, but also its complete eradication? What are the main obstacles in the way of this goal?

Yohei Sasakawa: We are counting the days until every country in the world has achieved the elimination of leprosy as a public health problem. However, this is different from eradicating the disease altogether. Medical experts tell us that reducing the number of cases of the disease to zero is not possible. My thinking is that our ultimate goal should be to create a leprosy-free world, rather than to aim for ‘eradication.’ What I mean by this is a world in which the number of cases of the disease approaches zero, and, at the same time, people affected by leprosy and their families are no longer subjected to discrimination. For that to happen, we must ensure we make a sustained effort to provide necessary health services, while also doing what we can to change society’s mistaken notions about leprosy. I often use the metaphor of a motorbike to explain this: the front wheel corresponds to activities related to the medical aspects of leprosy, and the rear wheel to activities corresponding to the social aspects. Both wheels must be of the same size and turn at the same time and at the same speed if the motorcycle is to move forward.

In order to realize the goal of a leprosy-free world, it is necessary to involve every member of society in tackling the disease both as a medical and a social issue. Looking the other way is not acceptable. I intended to devote the rest of my life to this mission.

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