International Leprosy Association Regional Congress of the Americas
I am very pleased to see all of you gathered here today for the ILA Regional Congress of the Americas. We have specialists from fields such as immunology, biology, and genetics who are engaging in research on an everyday basis to conquer leprosy. We also have here, physicians, nurses, and people from NGOs who are working on the frontlines to treat leprosy and to provide medical and social rehabilitation. And finally, we have here, leaders of the people affected by leprosy. Although we come from different backgrounds, our fight against leprosy has united us here today.
More than forty years ago, I decided to make the fight against leprosy my lifework. What led me to this decision was a visit I made to a village in South Korea, which was inhabited by people affected by leprosy. Many of them had severe deformities and impairments and were living in this isolated village as if in hiding. I was overcome with shock. From that day, I decided to dedicate my life to helping those who are placed in such miserable circumstances and forced to live very harsh lives, only, because they contracted leprosy.
A major milestone that encouraged me in my pursuit to help people affected by leprosy was the development of the multidrug therapy, or MDT. The discovery of this effective treatment made it possible to cure everyone suffering from leprosy. I wished to deliver this medicine to as many people as possible. And in 1994, at the World Health Organization’s first International Conference on Leprosy Elimination, held in Hanoi Vietnam, I announced that The Nippon Foundation would supply MDT drugs free of charge, all around the world for 5 years. After the 5 year period, the distribution of the MDT free of charge has carried on with the cooperation of Novartis.
As we all know, the drive that pushed us forward in our initiatives was the easy-to-understand, numerical elimination target of the WHO – less than one case per ten thousand population. As of 1995 there were 68 endemic countries. Now, thanks to the concerted efforts of Governments, NGOs, all the field workers, and the pharmaceutical companies, Brazil is the final remaining country, which is also committed to achieve elimination by 2015.
However, even if WHO’s elimination target is reached throughout the world, this will not mean that we have eliminated the problems related to leprosy. When we initially decided to distribute MDT drugs free of charge, it was our expectation that curing the disease would lead to the gradual reduction of discrimination, but it proved difficult to change the stigma and prejudice that were deeply rooted in people’s minds for such a long time. During my travels around the world, I personally encountered the reality of how people affected by leprosy and their family members, continue to face harsh discrimination, long after they have been cured. In some places it was impossible for a person affected by leprosy to go to school, take jobs, or get married. Certain countries had laws allowing spouses to file for divorce and employers to dismiss their workers if they discovered them to be affected by leprosy. I even heard of a case where a cured person who was elected as an assembly member but was later revoked because a state law prohibited people affected by leprosy from taking positions in state government.
This sort of stigma and discrimination sometimes acts as a barrier to progress on the medical front. There are cases where people with suspected symptoms are hesitating to get examined at hospitals because of fear of discrimination while there are other cases where physicians are refusing to examine affected patients because they are prejudiced toward leprosy. I am sad to say that I personally ran into such conditions in some of the villages that I visited.
Hearing so many such cases, it became clear that the medical and social challenges go hand in hand and if we are to truly solve the various problems surrounding leprosy, we would need to tackle not just the medical aspects but the social aspects as well. With this, we identified systems, institutions and perceptions as key barriers in society that are interfering in our fight against leprosy and developed the following three strategies to overcome them.
The first strategy is to abolish legal and institutional forms of discrimination. In 2003 I started to lobby the Office of the United Nations High Commissioner for Human Rights, insisting that the rights of people affected by leprosy have been overlooked in society and requested that this be addressed as a human rights issue. After 7 years of twisting and turning, we finally won the support of many of those involved, and in December 2010 the United Nations General Assembly unanimously passed a resolution on the “Elimination of discrimination against persons affected by leprosy and their family members,” along with accompanying principles and guidelines. Our next step will be to approach the relevant people in various national governments and to persuade them to adopt the guidelines and seek institutional and legal changes.
The second strategy is to change society’s misperceptions of leprosy. For my part, I have been transmitting messages to the world to remove the stigma and misperceptions associated to leprosy. This “Global Appeal” has been published on World Leprosy Day every January since 2006 with support from leaders in various fields such as politics, religion and the business circle. Next year’s appeal, which will be the seventh, has been endorsed by the World Medical Association and will be launched here in Brazil. I will make a call, with the support of various national medical associations, urging healthcare practitioners to provide treatment based on correct information about the disease and declaring that society must also not discriminate against people affected by leprosy.
The third strategy is to encourage people affected by leprosy and their families to change their mentality so that they may stand up to take the challenge against stigma and discrimination. Having a positive self image will be the driving force in toppling the wall that stands between them and society. Many affected people I met shared their thoughts on how it takes courage to even speak out, let alone take part in society. A voice of a single person may be too soft to be heard, but many voices in unison will be loud and clear. For this reason, in 2005, I worked together with the leaders of the affected people to establish the National Forum in India – a nation-wide network of people affected by leprosy and their families – to make it possible for them to fight for their own rights. With their efforts, they were able to get the petition committee of the upper house of parliament to present a report demanding for policies for better living conditions of people affected by leprosy.
Here in Brazil, the people affected by leprosy established MORHAN in the early 1980s. Since its founding, the organization has been fighting to solve various forms of discrimination against people affected by leprosy. Major activities include filing for revocation of discriminatory laws and certifying parents and children who were separated by the isolation policy to become recognized as families and demanding for their compensation from the government. As we can see from these examples, people affected by leprosy are taking initiative to get their voices heard so that in the not so distant future, they may regain their rightful place in society.
Leprosy is a disease where various issues are entangled, making it difficult to solve each one independently. This is why it is very important that we continue this multi-faceted approach and hold gatherings such as the one we have today, where people active in the different fields can come together to discuss issues relating to leprosy from various perspectives and build new networks. Drawing on the shared knowledge of our different specializations, will bring us one step closer to solving this complex problem.
I am convinced that this congress will make a great contribution to solving leprosy related issues in the Americas in the future and I have great expectations that Brazil will make a definite impact in this process.
I hope that you will make this four-day meeting a worthwhile event.