The National Forum Eastern Regional Conference on Social Integration and Empowerment of Persons Affected by Leprosy

Let me begin by saying that I am grateful to Dr. Asim Dashgupta, the Honorable Finance Minister, for joining us today.

What a pleasure to be at this National Forum! I give a warm welcome to all of you from Orissa, from Jharkhand, from Assam and of course from West Bengal.

I have been engaged in the fight against leprosy for the past 40 years. In that fight, I travel to many countries, but especially to India, a country close to my heart. In the past four years, I have come here more than 20 times. You could say that India is my second home.

It is my belief that the world is one family and we are all brothers and sisters. You are my brothers and sisters. I think of you as family. Wherever I go in India, I always receive a warm welcome, especially from people affected by leprosy.

Initially, many experts said that leprosy could not be eliminated from India. But thanks to you and everyone concerned, you made the impossible possible. Leprosy was eliminated as a public health problem in 2005. The prevalence rate of the disease is now below 1 case per 10,000 population. India will soon reach the goal at state level also.

This is the result of close cooperation between government, health workers, NGOs and volunteer organizations. It is the fruit of their unrelenting effort, their sweat and their tears. This achievement has been internationally acclaimed. I thank them for their dedication and hard work.

Fortunately, we have an effective cure in MDT. Since the 1980s, 16 million people around the world have been cured of leprosy – 11 million people in India alone. However, even though the number of new cases is in decline, the disease has not yet disappeared.
Last year, India had 139,000 new cases of leprosy.

Please remember that elimination is only a milestone on the way to completely wiping out the disease. The fight must not let up.

But leprosy is not just a medical issue. There is also the serious problem of discrimination, which arises from social prejudice. From times past, people with leprosy have been looked at differently. As a result, they have suffered social discrimination in every facet of their lives, including education, employment and marriage. Many of you here know what I am talking about.

You are not alone.

All over the world, people with leprosy have been discriminated against – typically by being excluded from society and denied their basic human rights. The situation must be changed. And it will be changed, because change is possible. This National Forum is an important step in that direction.

Looking back, the starting point was a conversation I had in 2005 with Dr. Gopal and his team, who are with us today, about establishing a National Forum. At the time, no one knew how many colonies there were in India, how many people lived in them, or what they did for a living. Without such information, how could we take appropriate steps forward? So a survey was conducted, and representatives of the different colonies were invited to attend a meeting. That was in Delhi in December 2005. It was the first National Forum. It was an emotional occasion. People affected by leprosy from around the country came together for the first time to make their voices heard in society.

An elderly woman approached me afterward. She said: “I did not get the presents that were given to all delegates because I was late arriving, but what I got today was something I never got in the last 30 years since I had leprosy: respect and dignity as a human being.”

Since then, work has continued to build a network of people affected by leprosy in India. The National Forum is now an annual event, and moves around the country. As the National Forum grows, and more people take part, I am convinced that its influence on society will further increase. Through your words and deeds, you can eradicate the discrimination that stems from society’s prejudiced view of leprosy.

Please have confidence. You are walking together toward a bright future. You must be the main actors. Society will not change until you take the first steps. I will do my utmost on your behalf. I promise to support you more than ever.

Now I’d like to share with you a very important international development that affects you all. In June this year, the United Nations Human Rights Council approved a resolution calling for the elimination of stigma and discrimination against people affected by leprosy and their families. This resolution was proposed by the Japanese Government at my request. It was approved by all 47 member countries unanimously. It was the first time that so many countries had agreed on the need to protect the basic human rights of people affected by leprosy and their families. The Indian government was one of the 47 countries. Your government acknowledges the need for action to end discrimination. I believe that you will be able to count on increased government cooperation for your activities.

My dream is a leprosy-free world. A leprosy-free world is a world free not only from disease, but also from discrimination.

And so, I urge you members of the National Forum: grow stronger and more united. Fight this social iniquity and reclaim your dignity. Do this for the sake of your children. You are the main actors for social change. And remember, you are not alone. We are with you too. To realize a leprosy-free world, let us take a new step forward together.