5th International Symposium on Leprosy and Human Rights

Geneva, Switzerland

It is indeed a great pleasure to see all of you at this fifth symposium on leprosy and human rights, today.

As it was mentioned in the first video, leprosy is one of the most discriminated diseases of human history. During the days when a cure was yet to be found, it was feared as an incurable diseases or God’s punishment.

For centuries, people affected by leprosy were ousted from their own hometown to be isolated in faraway villages and islands. The stigma against leprosy not only burdened the affected individuals but also their family members.

The advent of Multi Drug Therapy in the 1980’s brought about a major advancement in the treatment of leprosy. The subsequent distribution of the drugs, free of charge, universally in the 1990’s showed extremely satisfying results and liberated large numbers of patients from the scourge of humankind.

Furthermore, with early detection and treatment, leprosy could now be cured before the onset of any possible physical deformity. I expected that once the individual was cured of the disease discrimination would gradually fade. However, I was terribly wrong.

Despite this dramatic advancement in medical science, leprosy continued to torment people affected by leprosy—even those who had been cured of the disease—with the hard to erase, century-old stigma and discrimination instilled in the minds of people.

For more than four decades I have traveled the world and met with many men women and children affected by leprosy.

They all had different stories to tell~
~those who lost their work or were forced into divorce because they had been diagnosed with leprosy,
~those who were disowned by their families and were given no choice but to live in a colony,
~those who never tried to leave the colony for fear of discrimination from mainstream society,
All of these stories were different, yet there was one common factor: their immense suffering due to unforgivable violations of their human rights.

My heart was set to fight this grave social injustice. And I started to explore ways in which the plight of people affected by leprosy could be recognized by the international community as an issue of human rights.

Hence, in 2003, I went to the United Nations Office of the High Commissioner of Human Rights in Geneva. Seven years hence the Resolution on Elimination of Discrimination against People Affected by Leprosy and their Family Members was unanimously adopted at the United Nations General Assembly in December 2010. The resolution recommends governments, other bodies, and actors in society to give due consideration to the accompanying principles and guidelines, or P&G, when they are formulating and implementing policies.

This resolution in itself was a great milestone. But the nature of the resolution and its accompanying P&G were such that they were not legally binding documents. Therefore, without the implementation of the P&G by member states, nothing would change. People affected by leprosy would continue to live in fierce discrimination and violation of their human rights.

To prevent such an outcome, The Nippon Foundation took the initiative to hold five regional symposia in Brazil, India, Ethiopia and Morocco to ensure the UN resolution and the accompanying P&G would reach a wide spectrum of society including states, policy makers and all other stakeholders.

And we are holding the fifth and final symposium here in Geneva, a city that has a special place in my heart. This is a city to remember where the first major stride towards the elimination of discrimination against people affected by leprosy was taken.

As we look back on the past regional symposia, we see that each one concluded with concrete actions. The most notable among them is the establishment of the International Working Group (IWG).

The IWG under the leadership of the chair, Dr. Yozo Yokota, is a global working group of human rights experts. The group has been formulating action plans and a new follow up mechanism to better monitor how the states and other actors are implementing the P&G. Details on IWG’s activities will be shared by a member today, but I would like to take this opportunity to thank the members for their tremendous contributions.

Along with the work of the IWG, the Japanese Government will submit to the UN Human Rights Council which is currently in session, a new resolution. This will be a follow-up resolution to the 2010 UN resolution which called for an end to the discrimination against people affected by leprosy and their family members. Ambassador Mr. Yoichi Otabe, Representative Mission of Japan to International Organization in Geneva will kindly share with us the details later on.

I would like to take this opportunity to convey my deepest respects to the endeavors of the Japanese government. If adopted, the new resolution will enable further research by the Advisory Committee and establish a sustainable mechanism for the implementation of the P&G.

Another key stakeholder in ensuring the effective implementation of the P&G is people affected by leprosy themselves. It is a great honor and pleasure to share with you, the positive developments I have seen on their part.

The Nippon Foundation has always been advocating the idea that people affected by leprosy should play a leading role in rooting out discrimination. Based on this principle, we supported the inception of a national organization called Association of People Affected by Leprosy or APAL, in India, and have been supporting their operation ever since.