2005 African Leprosy Congress: Special Session on Human Rights in Leprosy

Johanesburg, South Africa

The medical advancements in leprosy treatment that have been made to date are truly remarkable, as reflected in the fact that over 14 million people have been cured of leprosy since the 1980s. The world has truly come together in an effort to reduce the number of people affected by leprosy, and we are achieving steady progress towards the goal of elimination. However, we must not let the knowledge that 14 million people have been cured lead us to complacency. We must turn our eyes to the issue of social discrimination, as leprosy can only be said to be truly cured when, not only the physical disease has been cured, but the social disease called discrimination has also been cured. The WHO, despite its many achievements in the medical battle against leprosy, faces serious constraints in addressing the social issues related to leprosy. I am always searching for effective ways to spread the correct knowledge about leprosy throughout the world. The members of IDEA, under the strong leadership and initiative of Anwei Law, have also been working to inform people about leprosy in each of their countries, and I have great admiration for their work. Despite these efforts, however, there are many people in this world who do not have a proper understanding of leprosy, and a large number who do not even know that leprosy is curable. Moreover, there are many people who discriminate against individuals affected by leprosy without realizing that they are doing so.

Approximately 14 million people have been cured of leprosy since the 1980s. If we go back a little further in time, there are probably about 20 million people who have been cured, and assuming that each of these 20 million people has five family members, it can be said that more than 100 million people have been relegated to the margins of society due to the stigma associated with the disease. This situation led me to visit the UN Sub Commission of Human Rights in July 2004. Before my visit, despite tackling a variety of broad topics, such as the Human Right to Health, Poverty and Human Rights, Human Rights and Women, the UN Human Rights Sub Commission had never addressed the issue of leprosy and human rights. I think that the members were surprised to find that this one issue affected over 100 million people around the world. As a result of our meeting, the 26 members of the Sub Commission unanimously agreed to undertake further investigation into the issue of leprosy and human rights. Following my speech, Dr. Yokota will be talking about this in more detail. As you know, the United Nations Sub Commission on Human Rights is composed of representatives from various countries, and citizens of member countries can appeal to the Sub Commission to take up the issue, with the aim of eventually getting the general assembly to adopt a resolution. We are still walking the first few steps of this important path, and there is a long way to go, but we need to push forward with unwavering determination, as a resolution will have a great impact in the fight against the stigma associated with leprosy. If the United Nations General Assembly adopts a resolution, each member country will be obliged to educate their citizens about leprosy in schools, corporations, and through the media, and spread the message that discrimination against people affected by leprosy will not be tolerated.

As you all know, medical integration has been progressing rapidly in recent years, and in most countries leprosy can now be diagnosed and treated in general hospitals. I believe that integration is also the key to tackling the social disease of discrimination against people affected by leprosy; that is to integrate the capabilities of all organizations working in this field, through the adoption of a UN resolution, and generate a synergy effect. I firmly believe that, once we have the two wheels of medical integration and social integration working together, we will find ourselves well on the path to realizing a world without leprosy. A world without discrimination.

It is highly encouraging to see cured persons from around the world come forward and contribute to this effort, as the words of a cured person are a million times more effective and convincing than anything I could personally every say. There is no doubt that the cured persons themselves will be the main actors and movers of this movement, and it is vital that they take initiative and assume leadership roles. I will of course do everything I can to get the UN General Assembly to adopt a resolution, but I cannot do this alone, and would like to ask your continued support and cooperation in this effort. And of course, if there is anything I can do to assist with organization building or other activities in each of your countries I would be more than happy to help. Dr. Yokota will also be asking each of you about your life experiences after this session. I hope that you will share your stories and honest opinions with him, as your words will be vital to obtaining a resolution from the General Assembly in May this year and achieving a world free of leprosy and discrimination.

(David Karashima, Translator)