Woodrow Wilson International Center for Scholars: “Leprosy and Human Rights”

Thank you for this opportunity to speak here today.

I have been working to rid the world of leprosy for 40 years.

In this work, I have followed in the footsteps of my father, who made a personal commitment to tackle the disease.

People are often surprised that leprosy is still an issue. But it is, and the challenge it poses consists of two aspects.

The first aspect is medical. Leprosy is an infectious disease, which must be treated and cured.

The second aspect is social. Leprosy stigmatizes, and we must counter the social discrimination that people affected by the disease continue to face.

 

A few facts about leprosy.

It is caused by a bacillus, M. leprae. This bacillus was identified in 1873 by a Norwegian physician, Dr. Armauer Hansen. Today, leprosy is also known as Hansen’s disease.

Leprosy is thought to be transmitted through the air. Contrary to popular belief, it is not spread by touch and is not highly contagious. In fact, most people are immune to the disease.

Leprosy affects the skin and nerves. Untreated, it can lead to disfigurement and permanent disability.

For much of history, there was no cure for leprosy. The disease was not fatal, but it was greatly feared because of its effects on the human body.

Only in the 1980s did an effective cure for leprosy become available. At the time, leprosy was endemic in over 120 countries.

Since then, we have made remarkable progress. Multidrug therapy, or MDT, has cured some 16 million people around the world.

The Nippon Foundation funded the free distribution of MDT worldwide between 1995 and 1999. Since 2000, this role has been filled by the Novartis Foundation for Sustainable Development, using drugs manufactured free of charge by Novartis.

The effectiveness of MDT and its free availability have been key elements in fighting leprosy.

Technical leadership has been provided by the World Health Organization. It set a goal of eliminating leprosy as a public health problem by 2005.

It defined this as reducing prevalence of the disease to below a level of one case per 10,000 population.

Working with national governments, international organizations and committed NGOs, the WHO has achieved that goal in all but four countries: Brazil, the DR Congo, Mozambique and Nepal. They too will eventually pass this milestone.

As WHO Goodwill Ambassador for Leprosy Elimination, part of my role has been to urge leprosy-endemic countries to use the window of opportunity provided by a free drug supply to tackle the disease.

I also encourage countries where leprosy is no longer a public health problem to focus on sustaining their achievement and further reduce the burden of the disease.

There is no room for complacency.

Worldwide, there are over 250,000 new cases of leprosy diagnosed annually. Because leprosy has a long incubation period, the new caseload will likely remain at this level for some years.

Diagnosed early and treated promptly, leprosy leaves no trace.

Unfortunately, society’s response to leprosy has not kept pace with medical advances.

Misperceptions persist that leprosy is highly contagious, hereditary, or divine punishment for past sins.

The stigma is deep-rooted and difficult to eradicate.

Perhaps this is not surprising given that leprosy is one of the oldest diseases known to humankind.

Since the dawn of recorded history, there have been numerous references to leprosy. Accounts can be found in the Old and New Testaments, the ancient documents of China, and Indian classics from the Sixth Century B.C.

There are also numerous works of art depicting people with the disease.

These tend to show how the individual with leprosy has been treated with all of the fear that dwells deep within the hearts of people – the fear of that which is different.

As a result, there was a tendency to exclude people with the disease. This was true regardless of country, religion or culture.

Often, this resulted in their forcible isolation in remote locations, cut off from family, friends and the community. People with leprosy became society’s ultimate outcasts.

Symbolic of this, many leprosaria were situated on islands – Molokai in Hawaii, where Father Damien served in the 19th century; or Robben Island in South Africa, which, before it became Nelson Mandela’s prison, was a place where people affected by leprosy were discarded. There are countless islands like these in the Aegean Sea, in Asia and elsewhere.

The only leprosy sanatorium in the continental United States was in Carville, Louisiana. Established in 1894, it operated until 1999. The inmates were kept behind barbed wire, and did not receive the right to vote until after World War II.

Stanley Stein was one of Carville’s most famous residents. He lived there from 1931 to 1967 and was a vocal campaigner for the human rights of people affected by leprosy. He once wrote: “the ravages of the stigma of this disease are as great as the ravages of the germ.”

Jose Ramirez, who has a Masters in social work, spent some 10 years in Carville as a patient. He was taken there in a hearse. His family and friends thought he was being driven to his grave. Mr. Ramirez says: “Regrettably, every person with leprosy has symbolically taken a ride in a hearse, resulting in labeling, rejection and fear.”

There are many sad stories all around the world. A few years ago, I visited a leprosy sanatorium in Indonesia. There, I met an 85-year-old woman. She had been separated from her family at the age of 12 and had lived in the sanatorium ever since.

When I asked her why she had not returned to her family after she had been cured, she replied, “It would cause a problem for them. They wouldn’t be happy. I’ll die a lonely death here.”

In my own country, Japan, people with leprosy were forcibly incarcerated in leprosy sanatoria under the draconian Leprosy Prevention Law.

Inmates used to say: “We will only be able to go home when we leave the cremator chimney as smoke.”

But there were also examples of the extraordinary human spirit. A Japanese poet named Akashi Kaijin contracted the disease in the 1920s. He maintained his dignity and pride in the most desperate circumstances. He left us the following words: “Unless I illuminate myself like a deep sea fish, nowhere will I find even a glimmer of light.”

Fortunately, the days when people with leprosy were forcibly isolated from society are over.

But invisible barriers still separate them from full social participation.

Because of society’s ignorance and fear of the disease, a diagnosis of leprosy can limit opportunities for education, employment and marriage.

Often, whole families are stigmatized.

As Goodwill Ambassador, I have increasingly focused my attention on the human rights aspect of leprosy.

My efforts in this regard are three-fold.

First, they are at the policy-making level.

Because leprosy had never been taken up at the United Nations, I approached the UN Office of the High Commissioner for Human Rights in 2003.

Subsequently, I lobbied the Sub-Commission on the Promotion and Protection of Human Rights. Over time, it passed three non-binding resolutions calling for an end to stigma and discrimination against leprosy-affected people and their families.

Now, the Japanese government is preparing a resolution to put before the UN Human Rights Council.

My hope is that one day the UN General Assembly will pass a binding resolution, with guidelines to be adhered to by all member countries.

Second, I have initiated a series of Global Appeals. Their purpose is to sensitize society to the way we have denied the humanity of people with leprosy.

The first appeal was launched in Delhi in 2006, and signed by distinguished world leaders including Nobel Peace Prize winners such as former President Jimmy Carter, Archbishop Desmond Tutu, and the 14th Dalai Lama.

The second appeal, announced in Manila in 2007, was endorsed by leaders of people affected by leprosy from 13 countries.

The latest appeal was launched at the Royal Society of Medicine in London this January. It was backed by leading human rights organizations, including Amnesty International and the International Save the Children Alliance.

Third, I have supported efforts to empower people affected by leprosy. In changing public perceptions of leprosy, their voices are the most persuasive of all.

Some of the most articulate voices are to be found in IDEA – the International Association for Integration, Dignity and Economic Advancement.

This is an advocacy group headquartered in New York. Its membership consists largely of leprosy-affected people in more than 30 countries.

It works to defy stereotypes, overcome historical stigma and restore the human dignity of people affected by leprosy.

The Nippon Foundation recognized the importance of IDEA’s work, and supported it from its earliest days.

In India, the country with the most cases of the disease in the world, The Nippon Foundation helped set up a National Forum of people affected by leprosy.

One of the Forum’s first tasks was to conduct a nationwide survey of self-settled leprosy colonies. To date, the survey has identified 700 such colonies whose inhabitants live on the margins of society.

Moreover, this Forum has successfully built up a network of colonies. It has identified committed colony leaders, thus empowering leprosy-affected people to take the initiative in tackling the problems they face.

We have also established the Sasakawa-India Leprosy Foundation. This acts as a catalyst for empowerment and social integration.

It creates opportunities for education, skills training, and access to microfinance so that people affected by leprosy do not need to beg for a living on the streets.

Ultimately, people affected by leprosy themselves must be the main actors in the movement to bring about their social reintegration and economic independence.

So, what have these past decades taught me?

Leprosy may be one of the world’s oldest diseases, but the discrimination it causes is as fresh as ever.

I believe it is the archetypal form of discrimination by one human being toward another.

As such, it poses questions for all of us to solve, and we must search our hearts for answers.

Why do people affected by leprosy, a completely curable disease, face discrimination?

Why do they face discrimination even after they are cured?

Why are even their family members stigmatized?

16 million people have been cured in the last two decades. Yet tens of thousands of them – and their sons and daughters too – continue to suffer this social injustice.

I believe we all agree it is unacceptable to define a person by his or her disease.

Therefore, we must unite to counter ignorance and prejudice, wherever we find it.

We must condemn the use of stigmatizing terminology, in particular use of the five-letter word “leper.” This was the message sent out by Stanley Stein 50 years ago.

We must treat others as we would hope to be treated ourselves.

After all, we each and every one of us have an equal right to live on this Earth.

Finally, let us remind ourselves that this year is the 60th anniversary of the universal declaration of human rights.

I hope it will be a breakthrough year for the rights of people affected by leprosy, and for the dignity of all human beings.