Conference on Health, Stigma and Human Rights “The Struggle to Eliminate the Disease and the Discrimination”

Minneapolis, USA

I wanted to show you this short film so that you could see the reality of those who have suffered and still suffer from leprosy today. As you saw in the film, leprosy was once considered an incurable disease, a curse or punishment from God, and it was feared and detested by people for centuries.

However, thanks to the development of effective treatment, leprosy became curable. I was determined to make the treatment available to all those who were suffering from the disease. So with the cooperation of WHO, The Nippon Foundation began to distribute medicine, known as “multidrug therapy” free of charge around the world.

Although we expected to see some immediate results, we faced many unexpected challenges.

I would like to give you some examples of what we came across in the initial stages:

For example, in remote villages where only traditional medicine was used, I had to show them, from step one, on how to remove the tablets from the blister pack and to take them with water.

In one tribe in Africa, where it was the custom to share food equally, they also shared the distributed medicine among the villagers. Of course, this meant that the treatment was not effective.

In some cases, patients did not come forward to receive treatment even though it was free. This was because they had no symptoms nor pain in the early stages, or because they were afraid of being discriminated should they have leprosy.

So you can well understand that simply distributing the medicine free of charge was not sufficient. We needed to take into consideration each local customs, practices and culture for more effective treatment. And with this in mind, it was necessary to collaborate with every stakeholder; WHO, health ministries, medical professionals, and NGOs.

As a result of these joint efforts, many more patients were treated and cured, and the number of patients greatly declined in many endemic countries. I began to feel a sense of achievement in the distribution of the medicine that had produced such results.

Although the number of patients decreased, what I witnessed was that the lives of those cured of the disease had not changed much. Even after being cured, they continued to live in the sanatorium or leprosy colony where they had always lived as patients. Some of the places looked like a pile of rocks standing in a barren low land, others were built on the narrow strip along the railway tracks. Although many of these places had no physical walls that separated them from the outside world, they were surrounded by invisible mental walls that the residents never crossed over. Even after being cured, they had to live as “former leprosy patients.”

Seeing this, I realized that I had been too optimistic. While busy with medical treatment of leprosy around the world, I overlooked that there was another even more serious side to this disease that once affected by leprosy they were discriminated and stigmatized even after a complete cure.

Discrimination and stigma are not caused by bacteria. The root cause is in the minds of people.

It then came to my mind that leprosy can be likened to a motorcycle. The front wheel represents the medical approach to cure the disease, and the back wheel represents the social approach to eliminate the stigma and discrimination. Just as the motorcycle will not go forward unless the two wheels are moving together, I believe that we need to adopt both approaches, medical and social, together and at the same time.

Yet, I wasn’t exactly sure where to start. But I realized that discrimination and stigma were clearly a violation of human rights and the appropriate place of appeal would be the United Nations.

So, it was in 2003 that I visited the Office of the United Nations High Commissioner for Human Rights in Geneva for the first time. There I was told that never once had leprosy-related discrimination been put on the table solely as a single human rights issue. It had been handled within the agenda of health with other diseases.

This was not difficult to imagine. Those cured of leprosy hesitated to speak out and assert their human rights. Perhaps many were not even aware of their own rights as a human being. One person who had been cured of leprosy asked me,
“Am I really entitled to human rights?”

I could no longer close my eyes to their suffering. I started to repeatedly visit Geneva, held meetings, and organized small photo exhibitions.

But, I clearly remember one moment at a United Nations Human Rights Council subcommittee meeting, which I attended with a group of five people who had been cured of leprosy. I was given the floor to address the meeting. After saying a few words, I handed the microphone to one of them, a woman from India.

She stood up and said, “I once had leprosy.”

Up to that point, the audience had only been half listening.
But they immediately turned around and looked at her.

That was the moment I cannot forget, even now.

For me, that was the moment that the issue of leprosy-related discrimination was virtually recognized by the United Nations as a human rights issue for the first time.

Finally in 2010, seven years after my first visit, the United Nations General Assembly in New York unanimously adopted a resolution on elimination of discrimination against persons affected by leprosy and their family members.

To bring about change in the spirit of this resolution, The Nippon Foundation has established a non-governmental task force that examines and reports on the situation around the world. In this effort, we are supported by two specialists in the area of human rights: the organizer of this conference, Professor Frey, and Professor Yokota who is addressing us this morning. They have provided much advice and play an important role in this endeavor. I would like to express my sincere gratitude to them for their invaluable contribution.

In taking the social approach, I think the involvement of those who have experienced leprosy is vital in eliminating the discrimination and stigma. I believe that it is important to let them speak out and let their voices be heard.

Through my experiences, I realized I could speak on behalf of those affected by leprosy, but nothing would ever have the persuasive power of their own voice.

From what I have said thus far, some may think that this disease is a matter that only concerns other countries. This was also true in the United States.

In the past, leprosy patients in the United States were sent away to two institutions where they lived in forced isolation. One is The Kalaupapa Settlement, on the island of Molokai in Hawaii. Surrounded on three sides by the ocean and the other side by a tall cliff, it was cut off from the rest of the island. The other in Carville, Louisiana was surrounded by a high cyclone fence topped with barbed wire and two guard towers.

José Ramirez, who is with us today with his wife Magdalena, is a friend of mine who once lived in Carville. He recovered from leprosy, and now, based on his own experience, he speaks out about leprosy and human rights issues. Because he speaks from experience, his words carry weight, and he is now a leading advocate for leprosy not only in the United States, but internationally. Let us look forward to hearing his personal story.

When some people hear about my work, they tell me that leprosy is a problem of the past. They say there is no need for a struggle now. However, I believe that thinking about leprosy is precisely what we need to do now. Thinking about leprosy leads us to think about humanity. All over the world, the history of leprosy is often spoken of as a “negative history” which in some places was even forgotten or erased.

Yet, at the same time, the history of leprosy is also one in which people affected by the disease have shown resilience in facing up to and overcoming discrimination, even in the most desperate of circumstances. They lost their identity, their home, their family, friends and social ties—and yet, the path they have taken as human beings teaches us the strength and tolerance that human beings are capable of. It is an invaluable history.

In 2009, Father Damien, who devoted his life to caring for leprosy patients in Kalaupapa, was canonized by Pope Benedict XVI. In the same year, President Obama signed a legislation to create The Kalaupapa Memorial that will be inscribed with the names of the 8,000 people who were sent there.

I believe we must pass on to future generations the experience and record of the discrimination suffered by people affected by leprosy, so that humankind will never forget. We must ensure that their voices will be heard by future generations. I consider this to be an important mission and I will continue to work to preserve the history of leprosy.