Jadavpur University Golden Jubilee Lecture
It is a great honor to be here today to speak to you at the prestigious Jadavpur University, a school that has produced numerous leaders for the nation.
I first visited this university in 2003, to inaugurate the Ryoichi Sasakawa Young Leaders Fellowship Fund. The purpose of SYLFF is to foster future leaders who transcend the boundaries of nations, ethnicities, cultures, religions and beliefs. In the past 18 years, the SYLFF community has grown in 45 countries with 69 universities and consortia. The number of SYLFF fellows world wide has reached as many as 9,000 to date. It is a great honor to count Jadavpur University as a part of our network. We are sure that the university will play a leading role in the SYLFF community.
SYLFF was named after my late father, Ryoichi Sasakawa. His motto was, “The world is one family; all humankind are brothers and sisters.” This view is the underlying philosophy of The Nippon Foundation, which I serve as Chairman. They have pushed us to conduct a wide variety of programs in over ninety countries around the world. We are particularly concerned about such issues as public health, poverty, starvation and education, and focus our efforts on these areas. Public health in developing countries is of particular concern to The Nippon Foundation, and we have spent decades eliminating the burden of disease that plagues those who live there. The elimination of leprosy is a especially important to us. Since it is my life’s work, for which I have worked for more than 30 years, I hope you will allow me to say a few words about it.
My Involvement in Leprosy Elimination
Of all the forms of human suffering, my father chose eradication of leprosy as his life work. As you all know, there has never been a time when leprosy was not feared. When my father was still a young boy, there lived a beautiful girl in his village who had contracted leprosy. She could neither get married, nor go outside of her home. Finally one day, she disappeared, never to be seen again. Having seen this tragedy, my father was filled with hate for leprosy and vowed to eliminate the disease from this world. Unfortunately, he died before realizing his dream. And so, I have taken his oath on my own shoulders. As the WHO Goodwill Ambassador for Leprosy Elimination, I am giving my life to ending this disease. Leprosy elimination is my promise to my father. Unless I achieve this goal, I will not be able to go to the heaven, and so I spend one third of every year visiting endemic countries.
Needless to say, leprosy has caused great suffering for millennia. It was mentioned in ancient texts around the world, such as the Old and New Testaments, Chinese scriptures, and even the Indian Sushruta Samhita, a book from the 6th century B.C. In medical terms, leprosy is a chronic, communicable disease caused by bacteria. It affects the skin and nerves, and sometimes causes severe deformities in the face and limbs. It seems to strike randomly, and in the past has usually doomed its victims to an unstoppable course of worsening conditions. Regardless, it is never fatal. For this reason, leprosy has become cloaked in stigma. The disease has become the symbol for that which is most feared. In reality, however, I would like you to know that leprosy is one of the world’s least infectious diseases. I have met, shaken hands and hugged thousands of patients and cured persons over the past 30 years, but I have never been infected. There is nothing to fear.
The Road to Elimination
Despite its long history as an incurable disease, leprosy became curable in 1981, with the development of multi-drug therapy, or MDT. At that time, I realized that it was a great opportunity to push for the elimination of the disease, and so I decided to provide MDT free of charge, all over the world, for the five years from 1995 to 1999. After that, I handed the baton off to Novartis, which is also now offering free treatment worldwide. As a result, leprosy has been eliminated in 113 countries and the number of the endemic countries has fallen drastically to 9. About 14 million patients around the world have been cured, and the number of current patients has dropped to below 500,000.
The Indian Situation
In India alone, 11 million patients have been cured since the 1980s. The total number of patients this year fell to 250,000.
The dramatic progress has made the elimination of leprosy in India possible. This was a lifelong dream of Mahatma Gandhi. This is due to the coordinated efforts of the Indian central government, state governments, districts, blocks, every administrative organization at all levels and the WHO. It was also thanks to the long-term commitment of NGOs that have worked in the field from the early stages of international leprosy work. In recent years, leprosy has not been treated in India as a special separate disease, but as something curable. It is now being integrated into General Health Services. In addition, the drug is now available to patients at any health center in the country.
I have been to India 13 times in the past 4 years, aiming to help it eliminate leprosy. I have traveled to 13 different states, visiting rural villages in such places as Bihar, Orissa, and Jharkhand. At each place, I meet with political leaders and media professionals, requesting their support and cooperation for our elimination activities. I also visit hospitals and health centers, to ensure that appropriate treatment is provided to patients, and that health centers can receive a steady supply of medicine. I also give encouragement to health workers who work in these facilities, and I visit colonies to meet with the patients, the cured people, and their families. I talk and eat with them, as well as give assistance and encouragement.
Can India Achieve Elimination?
Elimination is defined as a prevalence of less than 1 patient in 10,000. The prevalence rate in India is currently 1.21, and in West Bengal it is 1.89. Medically speaking, there is no doubt that India will succeed in eliminating leprosy this year or the next, and fulfilling a long-time dream of Mahatma Gandhi and all human kind. If we consider the thousands of years of fighting against this disease, it is clear that this achievement is a great historical accomplishment.
In 1946, when the Health Minister invited Mahtma Gandhi to the opening ceremony of a leprosy hospital, he wrote in a return mail, “You invite me to open the hospital, but I will come 5 years from now to close it.” The day of his martyrdom, January 30, is now commemorated as Leprosy Day in India. 57 years after his death, Gandhi’s dream is now about to be realized.
Leprosy and Human Rights
But leprosy is not only a medical disease. It has a serious social aspect as well. This problem is stigma and discrimination. As per my father’s will, I have been pushing vigorously for the elimination of leprosy, but I realized at one point that I have for a long time failed to recognize that this discrimination is a very important and crucial side about leprosy. It is a fact that, even after being cured, people affected by leprosy cannot return to society. Curing them, thus becomes meaningless, if they are still not accepted by society afterward. It was only in recent years that I realized that, unless the problem of discrimination related to leprosy is solved, the fight against this disease cannot be won.
In March of this year, I met with Prime Minister Manmohan Singh and directly requested that he strengthen his government’s efforts to eliminate leprosy. He said, “I am doing my utmost for the elimination of this disease, and am making efforts to redress the human rights problem faced by patients, recovered people and their families.”
From ancient times and in all societies, those with leprosy were branded as unclean, sinful people. They were ostracized and isolated from the societies they belonged to. When they contracted leprosy, they were driven out even by their families, and were stripped of their names to protect the honor of the family. They no longer had a social existence. In this way, they were deprived of a voice with which to speak out against society. In most cases, their families abandoned them, providing no help or support.
In India, the law that segregated leprosy patients from the rest of society has been abolished. However, discriminatory conduct remains as a living custom. Often, it is as if the old laws still existed. For example, marriage acts still contain clauses that lawfully allow such discrimination. Leprosy patients cannot legally appeal a divorce filed by their spouse. They are often restrained from using public transportation or eating in restaurants. Even if they manage to enter a restaurant, they are only allowed to eat with their own dishes. These kinds of discrimination still exist.
Today, it is thought that there are about 20 million recovered people in the world. If each of these individuals has five family members, then the total number of people affected by leprosy would rise to about 100 million. It is very reasonable to believe that all of these people suffer from unjustifiable discrimination in one way or another. I have already mentioned that there are more than 11 million leprosy-affected people in India. Most of them still live, isolated in about 700 leprosy colonies remaining around the country, experiencing severe discrimination. Their families as well often have no opportunity for employment, education, or even marriage. It is no exaggeration to say that most of them depend on begging for a living.
Current Activities to Deal with the Human Rights Aspect of Leprosy
As you can see, leprosy is raising a serious human rights problem or us. The problem is deep, present everywhere around the world, and its victims are vast in number. However, because of discrimination, people affected by leprosy could never raise their voices. There was nobody who dared to speak on their behalf. Thus, this problem has never been formally taken up by any international organization, let alone discussed in a reasonable manner.
To address this, in 2003 I visited the UN Human Rights Commission for the first time and met with then Acting High Commissioner for Human Rights Mr. Bertrand Ramcharan to discuss the issue of discrimination faced by those affected by leprosy. He immediately said that it was deeply regretful that the problem had never been discussed at the Human Rights Commission, during the more than 30 years of his career. He promised his full support and cooperation to the cause of addressing this issue. Since then, I have appealed again and again to the Human Rights Commission and its Sub-Commission on the Promotion and Protection on Human Rights about the seriousness of this issue, and requested that these bodies take up the problem as a formal agenda.
As a result, this past August, the Sub-Commission discussed the issue of leprosy and human rights, based on a special rapporteur’s report, and a new resolution was adopted. This resolution requests governments 1) to abolish legislation that requires forced institutionalization of leprosy patients, 2) to provide appropriate remedies to former patients forcibly hospitalized in a sanatorium, colony, hospital or community, 3) to immediately prohibit discrimination of any type against leprosy victims and their families, and 4) to make every effort to include leprosy education in school curricula so as to provide correct information about leprosy, leprosy patients and their families and further, to prevent discrimination against them. In addition, it decided to continue consideration of this issue through further investigation by the Special Rapporteur. It recommended that the Human Rights Commission approve the Secretary-General and the United Nations High Commissioner for Human Rights to provide all the assistance necessary to accomplish this task.
This resolution is a huge advance in the road to eliminating the stigma related to leprosy. I believe that it will lead to further breakthroughs. As a result of continued investigation, guidelines should be drawn up, for all governments to follow. A resolution should eventually be adopted at the UN General Assembly. It has been three years since I first knocked on the door of the High Commissioner’s office. Finally I am beginning to feel that it has become possible for a camel to pass through the eye of a needle.
The Nippon Foundation, and its affiliate, the Sasakawa Memorial Health Foundation have long supported those affected by leprosy, helping them to their feet. As a result, many of these people in India have broken their silence and have begun to raise their voices.
Here, they are called lokdoots, and through their voice, they have provided the driving force to change society. Among them, there are many that have fought off the discrimination, established a life for themselves, and have succeeded in leading fruitful lives. In this year’s Human Rights Sub-Commission, leprosy affected people from India, Nepal, and Ghana responded to our invitation to speak, reporting on the various challenges of leprosy which they have personally faced, and appealing for improvement. This was the first time in history that leprosy-affected people had formally made such appeals at an international body. The words of those who have directly suffered from social discrimination have the most power to persuade, and their direct action and effort give encouragement to fellow sufferers. It will become a real force in changing society.
In my own country of Japan, there existed a law justifying segregation until 7 years ago. Those who had been expelled from society sought compensation from the government for the loss of their rights and in May 2001, they won their case. The fact that these individuals won the court case and that the government admitted its mistake made headlines worldwide. In describing how he felt immediately after this victory, one of the plaintiffs said, “Human rights are like air. I feel that today is the first time that I can breathe freely.”
In order to support such activities of those affected by leprosy, society needs to provide a support mechanism. To establish such a mechanism, I will begin to call upon the cooperation of various groups and organization in different parts of India such as the Confederation of Indian Industry, the Rotary Club in India and numerous other NGOs working for social activities. By utilizing their broad networks, they can sensitize the public and raise funds to support leprosy-affected people. In addition, from the Japanese side, I would like to broaden the fund-raising activities already in progress in Japan. I hope to not only provide micro-credit schemes, but also scholarship programs for the children of Indians who have had leprosy. It is also important for the media to sensitize society with correct information about leprosy. In order to explain about the realities of leprosy and to seek their help, I usually meet with media professionals at both the national and state levels when I visit India. I especially find it important that the media spreads the 3 simple messages; 1) leprosy is curable, 2) drugs are available free of charge, and 3) social discrimination has no place in today’s world.
The history of leprosy is the history of how one particular disease determines, without mercy, the entire lifetime of a man or woman, and his or her entire family.
The fight for leprosy elimination, has come to the 99th mile in a 100-mile journey. However, the last mile is the most lengthy and difficult. India is likely to complete this journey by the end of this year. But our fight does not end there. I consider this elimination as a public health problem as only a milestone towards eradication of leprosy. My next target is to eliminate the social stigma and the discrimination and to resolve the human rights problems. On this front, we have only began to take the first step in this, our second 100-mile journey.
In order to create an environment in which all leprosy affected people can be members of society, we must spread correct information through school education and the media. On one front, we must work through organizations such as the UN Human Rights Commission to reach governments around the world. On another front, we must seek the cooperation of those affected by leprosy, spreading the word at the grass-roots level. This is the key to establishing a new society within the current century, one where human dignity and rights are respected, and our many cultures, ethnicities, and individuals are accepted by all.
I am now planning to call representatives from each leprosy colony in India to Delhi this coming December, to hold a historic first meeting of colony representatives from around the country. I sincerely hope that this meeting will become a major step towards improving their lives.
As I said at the beginning, my late father Ryoichi Sasakawa used the motto, “the world is one family, all human kind are brothers and sisters” when he established The Nippon Foundation. I have followed this philosophy in all of my life’s activities. My life is dedicated to those affected by leprosy. Leprosy patients, those who have been cured, and their families are my brothers and sisters. And they are also your brothers and sisters. I ask you, please, reach out with me to support our brothers and sisters.