Global Appeal 2009 Launch Ceremony ~To End Stigma and Discrimination against People Affected by Leprosy~

London, England

Thank you for attending today’s event.

Every year on World Leprosy Day, I lead a Global Appeal to end discrimination against people affected by leprosy and their families, and the stigma associated with the disease. This year’s appeal has been endorsed by 16 leaders of some of the world’s great religious faiths. I am most grateful to them for their support.

Leprosy is one of the oldest diseases known to humankind. References to it go back as far as the 6th century BC. Because of its disfiguring effects, and because there was no cure, it was feared as a curse, or God’s punishment. Those who came down with leprosy were cast out from their homes and villages and banished to isolated mountain areas and remote islands. They suffered discrimination that is hard to believe — discrimination that has continued to this day.

On the medical front, much has been achieved in recent decades. With the advent of multidrug therapy in the 1980s, there is now an effective cure for leprosy. Diagnosed early and treated promptly, there is nothing to fear. Leprosy, moreover, is only a mildly communicable disease.

Yet social prejudice, and the discrimination that stems from it, remain deep-rooted.

For example, the Chinese authorities initially planned to ban anyone with leprosy from traveling to China to attend last summer’s Beijing Olympics. When I found out, I protested, and the ban was eventually lifted. This is not just a Chinese problem. Other countries, including the United States and the United Kingdom, also place restrictions on the issue of work or residence permits to people with leprosy.

In addition to from official regulations, there is open discrimination across the social spectrum.

A person who becomes ill with leprosy is often branded a “leper” or its equivalent in other languages. While the word describes a person with leprosy, it carries the added nuance of pariah, or social outcast. It is an extremely damaging term. Once that label has been applied, it sticks for the rest of a person’s life, even after he or she has been cured. The stigma remains.

For that reason, people affected by leprosy have demanded that the term leper not be used. Unfortunately, its use continues to this day in the news media, including the UK media, damaging the dignity and human rights of people with the disease. I would therefore like to use this platform to appeal for an end to the use of this word – let it no longer be used as a term of derision and exclusion.

This is not the only example of discrimination that continues in everyday life.

To date I have met literally thousands of people affected by leprosy. Each has his or her own story of suffering.

When I visited a leprosy hospital in Indonesia recently, I met a 21-year-old man who had been treated there. I said to him, “You are going back to live with your family, I presume.” In response, he suddenly burst into tears and said, “I have neither village nor family who will accept me. I’m all alone.”

Examples such as this are not confined to Indonesia.

Someone living in a Japanese leprosy sanatorium once remarked, “Only after I die and leave here as smoke from the crematorium will I finally be able to go home.”

In Japan, the United States and other countries, there are people who changed their names when they entered a leprosy hospital or sanatorium, so as not to cause problems for their families. Many continue to use those names today.

When a person falls ill, nothing is more important than the support of loved ones. But often, people who get leprosy are abandoned by their family.

In many cases, unless a person gives up the right to live at home and use his or her own name, then even family members become tainted by the stigma and fear of being alienated from society. Around the world, there are people who have lost out on education, marriage and employment opportunities because they had a loved one with leprosy.

Since an effective cure became available, 16 million people have been cured of leprosy worldwide. However, if we include family members, perhaps as many as 100 million people continue to face leprosy-related discrimination in some form or other on a daily basis.

My dream is to realize a leprosy-free world. Such a world will not merely have eradicated the disease in a medical sense, but also the prejudice and discrimination that stems from it. Only then can we say that leprosy truly has been vanquished.

To date I have made various efforts to address this social aspect of the disease.

I have written to newspapers asking them to desist from using the term “leper.” When visiting developing countries, I make a point of shaking hands and embracing people affected by leprosy in front of the cameras so that these images are transmitted to the general public. I support efforts by people affected by leprosy to make their voices heard and reclaim their dignity.

My lobbying of the UN resulted in a UN Human Rights Council resolution, passed in June 2008, to eliminate stigma and discrimination. Basic principles and guidelines are now being drawn up and will be presented to the Council by September this year.

But this is not enough.

To end discrimination, we must instigate a mass movement for change. We need to reach every corner of society with the facts about leprosy. The Global Appeal is one way of doing this. I ask the religious leaders who have signed it to convey its message to their believers and followers. Your words have great influence. You have the power to remove the social prejudice and discrimination associated with leprosy. You can say with conviction that it is not a curse or God’s punishment – and you will be believed. You can help make this a truly leprosy-free world. Let us therefore go forward – all of us, from many faiths – and tackle this problem together.