4th Middle Eastern Regional Symposium on Leprosy and Human Rights

It is a pleasure to welcome representatives from governments, the United Nations, NGOs, and other international organizations, as well as human rights experts, and leaders of people affected by leprosy. Furthermore, I wish to convey my deep appreciation to the Ministry of Health of the Kingdom of Morocco and to our partners at the WHO for their dedication in the fight against leprosy. I would also like to thank United Nations Secretary-General Ban Ki Moon and His Holiness the Dalai Lama for their very encouraging video messages.

This is the fourth regional symposium on leprosy and human rights. Leprosy has been one of the most misunderstood and stigmatized diseases known to humankind. Without a known cause, patients were universally removed from their communities and placed in isolated villages or remote islands. The stigma against leprosy not only burdened the affected individuals but also their family members.

In the 1980s, an effective treatment method called multi-drug therapy was developed, and in the late 1990s the treatment became universally available for free. These two developments helped to drastically reduce the global number of patients. However, the intensity of the stigma and discrimination in society remained unchanged.

In my over 40 years of working for the elimination of leprosy and its entailing stigma and discrimination, I have travelled the world and met with thousands of people affected by leprosy. I met men and women who lost their jobs because of leprosy. I met men and women who had been disowned by their families because of leprosy. And I met many men and women who refused to leave the colonies even after they were free to return home because they were afraid to face discrimination from society. Although no two lives were the same, the enormity of their sufferings from the lifetime of intense stigma and discrimination was universal. My heart was set to fight against this grave social injustice.

I first approached the Office of the United Nations High Commissioner for Human Rights in 2003 to address the problem of leprosy as a violation of human rights. After seven years of repeated visits and wholehearted support from member countries, NGOs, and various other entities, on December 2010, the United Nations General Assembly passed a resolution on the “Elimination of discrimination against persons affected by leprosy and their family members.”

It was a remarkable breakthrough; a historical moment when the international community recognized the rights of these marginalized individuals and the importance to work toward eradicating all forms of stigma and discrimination against leprosy from the world. But more importantly, this resolution awakened the minds of the affected people themselves to realize that they are entitled to the fundamental human rights that are granted to every human being on earth.

The resolution recommends governments, other bodies, and actors in society to give due consideration to the accompanying principles and guidelines, or P&Gs, when they are formulating and implementing policies. The P&Gs state that persons affected by leprosy and their family members should be treated as people with dignity who are entitled to all human rights and fundamental freedoms, without discrimination on the grounds of leprosy; and the P&Gs also lay out specific provisions that governments should follow, such as abolishing discriminatory legislation and removing discriminatory language from all types of publications.

But the UN resolution is not a binding document. Unless the P&Gs are put into practice, the resolution is just words on paper and the lives of people affected by leprosy will continue as before.  

This is why we are here today. This conference is the fourth in a series of five regional symposia on leprosy and human rights to familiarize governments, policy makers, and other related bodies with the P&Gs that accompany the resolution and to guide them on how to put them to good use. The first three symposia took place in Brazil, India, and Ethiopia. The International Working Group was formed after the conference in Brazil, and its members are now working to compile a more concrete action plan for governments to follow in implementing the P&Gs in their countries.

Many of the problems facing people affected by leprosy today stem from society’s misperceptions and ignorance. Here in the Middle Eastern region too, leprosy is still a subject of fear. It is not uncommon to find people who mistakenly assume that leprosy is highly contagious and that, therefore, those affected should be excluded.

So what must take place? We need greater social awareness. We need to put an end to the centuries of ignorance, prejudice, and discrimination. Leprosy is not hereditary, it is not a curse; it can be cured with proper medication; and therefore, it is nothing to be ashamed of. We must make sure that these facts become common knowledge in every society. 

And how shall we accomplish this? As written in the P&Gs, it is imperative that governments work with NGOs, civil society, the media, and the business sector to formulate policies and plans of action to raise awareness in society and to foster respect for the human rights and dignity of persons affected by leprosy and their families. In this region in particular, greater importance should be placed on the role of women as well as the preservation of history. Both are important topics that will be discussed in our sessions later today. If governments can make a commitment toward this end, I am convinced that it will have an impact that is farreaching.

I look forward to many fruitful discussions and hope that this symposium will help to kick start real action in the Middle Eastern region. 

Thank you.