20th International Leprosy Congress

Your Excellency Dr. Francisco Duque III, Secretary of Health, Dr. Roch Christian Johnson, President of the International Leprosy Association, Ladies and Gentlemen.
It is my honor and a great pleasure to be back with you at this 20th International Leprosy Congress.

This congress is very unique because it is open not only for doctors and health personnel, but also for many other stakeholders including NGOs and persons affected by leprosy. This is probably the only academic conference in the world, in which persons affected by the disease are actively participating. I would like to express my sincere respect to all those who are involved in the tireless work of the congress.

The first time I met persons affected by leprosy was over forty years ago when I visited a leprosarium with my late father, Ryoichi Sasakawa. I have always been healthy, and it came as a shock to me to learn that there were such people who were struggling against the disease.

They were abandoned by their families.
They were rejected by society.
They were deprived of their freedom.

All and just because of leprosy.

My father took their hands, spoke with them, held them tight and cried out loud. That was the first time I ever saw him in tears. I was moved by my father who came face to face with them so seriously. That was the time when I decided to devote my life to carry on his work.

Since then, I have been committed to the struggle against leprosy and its associated stigma and discrimination around the world. My only weapons in this struggle were passion, perseverance, and endurance. My “battlefield” was where the problems lay as that is where solutions lie. I have met countless numbers of persons affected by leprosy in the jungles of Africa, arid deserts, the Amazon rainforest, and other remote areas. I am 80 years old now, and over a period of 40 years, I have visited 120 countries and regions.

MDT must be delivered to the very last patient!!!
This is what I felt as I continued to visit many places and patients. With this in mind, The Nippon Foundation and the WHO co-hosted an international conference in 1994 in Hanoi, Viet Nam. There, I made an official announcement that The Nippon Foundation would donate 50 million US Dollars and distribute MDT for free, for five years, around the world. As a result, in five years, 3.32 million patients were cured. Since 2000, thanks to Novartis, MDT is continued to be supplied for free today. I would like to take this opportunity to express my gratitude to Novartis for their generous support.

I was confident of a brighter future. However, everything was completely different from what I had originally imagined. Even though free medication was given, there were some patients who did not come forward to receive the treatment, and also there were still many undiscovered patients.
I had simply assumed that everything would be solved if the disease were cured. But I was wrong. While leprosy became curable there was no cure for prejudice and discrimination which I consider as a disease that society is affected by.

Persons affected were abandoned by families.
They could no longer go to school.
And they could no longer work.

They all suffered from discrimination, all and just because of leprosy. Some had feared discrimination and avoided getting any treatment, leading to further progress of the disease. I realized that leprosy was not a simple medical problem, but that it was clearly a human rights problem.

I decided to take the matter to the United Nations where global issues are discussed, and actions proposed by all the member countries. In 2003, I visited the Office of the United Nations High Commissioner for Human Rights in Geneva for the first time alone to ask for leprosy to be put on the agenda of human rights. But to my disappointment and surprise leprosy had never once been considered as a human rights issue. After many visits, I was given an opportunity to speak at a seminar for the officers of the UN Human Rights Council.

However, only five people attended the first seminar. This gave me a clear answer as to how little attention was given to the issue of leprosy. After that, The Nippon Foundation hosted a series of seminars during human rights sessions in Geneva. In order to get the interest of many, we even enticed them with simple light lunch, hoping they would listen to our presentations. However, they just left as soon as they got hold of the free lunch. Only 10 people came to the venue that had a capacity of 50.

But I was not a man to give up. We worked hard for seven years with repeated improvements and implementation. Meanwhile, many influential people became our supporters, and finally in December 2010, the United Nations General Assembly unanimously adopted the resolution on the elimination of discrimination. This was a huge step for us to move forward.

Whenever I go abroad, I always meet with the national leaders of the countries. We cannot solve the issue of leprosy without their understanding and support. Without their support, we cannot secure the budget for activities to eliminate leprosy and the associated discrimination.

In July this year when I visited Brazil, I met President Bolsonaro and received his strong support on my work to eliminate leprosy and its associated stigma. I told him that Brazil has the second highest number of cases of leprosy in the world, and that it needs to make further efforts against the disease. The president suggested that we reach out to the nation right away. He took his mobile phone and started a live broadcast on Facebook. During the live broadcast, he firmly stated that leprosy is an issue that the government of Brazil needs to be involved in and that he will work with me. I also stressed to the audience the importance of early detection for Brazil to aim for “Zero Leprosy.” This 13-minute-long video has been viewed more than 700,000 times and attracted countless comments. It is very reassuring to have leaders of countries to be supporting our activities.

In my opinion, persons affected by leprosy are the most active people of all those who are affected by diseases. In 2006, I supported the establishment of an organization of persons affected by leprosy in India. To date, I continue to fight against the associated issues with the persons affected by leprosy from around the world. There are many organizations around the world in which the persons affected by leprosy are playing key roles. Thanks to their continuous hard work, I believe that we have opened a new chapter in our history.

There are three important roles the organizations by and for persons affected leprosy play.
First, they remove social constraints, such as abolition of discriminatory law. Second, they improve the quality of life of those affected by leprosy. And finally, they raise awareness that leprosy is curable, treatment is free, and discrimination has no place. All those who are here today are focusing on achieving their three important missions.

The Nippon Foundation and Sasakawa Health Foundation have hosted a series of Regional Assemblies for the organizations of persons affected by leprosy in Asia, Africa, and Latin America, discussing the issues and solutions within each region.

From Saturday until today, “Global Forum of People’s Organizations on Hansen’s Disease” was hosted as a concluding session. There were over 60 participants from 23 countries around the world, and this was the biggest forum we have ever organized. We were able to provide practical training, and I am confident that fruitful discussions were delivered. Later today, I believe Jennifer from CLAP, Coalition of Leprosy Advocates of the Philippines will be representing to speak about the achievements of the forum. I sincerely hope that you will listen to their collective voice. With us today, there are representatives of organizations of persons affected by leprosy from 23 countries. Will all of you please stand? Ladies and gentlemen, please give them a huge round of applause.

To date, many individuals and organizations have worked hard for the elimination of leprosy. I believe the elimination of leprosy has been an important milestone in my journey. I welcome heartily that a new network of many stakeholders, the “Global Partnership for Zero Leprosy” has been now established. This collaboration will greatly enhance our work towards achieving “Zero Leprosy.”

Taking this into account, I would like to express my opposition to leprosy being considered as one of the Neglected Tropical Diseases. Leprosy has never been neglected even for a moment by both persons affected and by people who have worked hard for their betterment. In my opinion, this medical terminology feels like it is looking down on the patients and also lack of respect towards those who are still fighting against leprosy today.

Leprosy is an ongoing issue.

I would like to request to all the medical stakeholders here today to continue working on discovering the causes of transmission of leprosy, developing vaccination, and creating prosthetics and orthotics for those with impairments. With globalization and migration, there are new cases, even in countries that used to see few cases. None of the countries is an exception. However, the number of leprosy medical specialists is decreasing rapidly world-wide.

In closing, I would like to make a special request to you, leprosy medical doctors, to devote your time on educating the next generation who will have the skills and knowledge to diagnose and treat leprosy.

Now, Ladies and Gentlemen,

Let us unite towards “Zero Leprosy,” a historical challenge for all humankind!

Thank you very much.