Global Leprosy Programme Managers’ Meeting

Thanks to the efforts of many people, including all of you, the global effort to eliminate leprosy as a public health problem has been a great success. I’d like to salute all of you for your hard work. Thank you very much. Brazil has expressed the commitment to reach the elimination milestone by 2015. In the long history of leprosy, I believe these recent decades hold a special place.

Yet, I think you will agree with me, leprosy is gradually losing priority in the health service agenda. In India, the number of new cases is decreasing only very slowly. In Indonesia, there is some cause for concern. In Africa, which I visited recently, there are ongoing challenges. The need to maintain quality leprosy management in all these places remains imperative.

As you well know, elimination of leprosy does not mean we have eliminated all problems related to leprosy. We continue to see significant numbers of new cases around the world. People are still suffering from disabilities, stigma and discrimination as a result of the disease. Much work remains to be done, on both the medical and social fronts, to alleviate the suffering caused by leprosy. This is our ongoing mission.

On the medical front, we are still faced with difficult problems. These include the leveling off in new case numbers, the existence of leprosy hotspots and difficult-to-reach places, and the high rates of disability among new cases in some countries. Yet, in many countries, leprosy is a fading priority. This is compounded by dwindling expertise and resources. I have seen this for myself and I believe this has been frustrating for many of you. As WHO Goodwill Ambassador, I have been calling on political leaders and urging them to maintain leprosy as a public health priority. However because of competing programs, you will have to use your ingenuity to come up with strategic and creative approaches based on the needs of your country or region.

Take the example of hard-to-reach areas, urban slums, and tribal or nomadic populations, where the disease could be prevalent. Getting correct information to them is difficult. In such cases, it is imperative that we identify the targets and customize each approach according to the situation and circumstances. I realized the importance of this, after my many visits to endemic regions of Africa, India, Brazil, Indonesia and elsewhere.

Further, in order to advance one of the themes of this conference – the reduction in new cases with visible disability, we will need to find more effective methods of emphasizing the need for early detection and treatment. For people who don’t read or don’t have a radio or television, for example, street performances and dramas can be an effective tool to spread correct information about leprosy. I have seen a number of outdoor plays and have always been struck by how they captivate audiences.

Fortunately, with the WHO guidelines in place, it has become much easier for people affected by leprosy to get involved in assisting in early detection and education. I hope that all concerned countries will find ways to put into practice the WHO’s guidelines for greater involvement of people affected by leprosy. Please come up with your own strategy and creative ideas to deal with these issues.

If progress continues on the medical front, and if we can ensure early detection and appropriate treatment, then the number of cases with visible disability will decline. If disabilities are not obvious, the general public will have less reason to discriminate, which in turn helps people to voluntarily present themselves for diagnosis. It is your efforts that will make a difference to people’s lives.

In addition to the medical aspects, I would like to emphasize how important it is to focus on the social aspects if we are to truly make leprosy history.

In the long history of leprosy, a common response has been to cast out those with the disease. Abandoned by their own families and communities, it was as if a person ceased to exist. There were many mistaken beliefs about the disease – that it was highly contagious, hereditary, heaven’s punishment – and these took root in the public mind.
Because such beliefs are so deeply ingrained, people affected by leprosy continue to face rejection, exclusion and other forms of discrimination, even after they are cured.

Removing the stigma and discrimination associated with leprosy is not an easy task. We know it is a complex challenge, but we must not hold back our efforts if we are to see a world free from leprosy. For my part I have put in place three strategies.

The first is an attempt to sensitize the international community through focusing attention on leprosy as a human rights issue. I have done this by making political appeals to international organizations and national governments to take action. The second strategy is to build general awareness and transform social perception and understanding of leprosy through initiatives such as a Global Appeal. The third is to empower people affected by leprosy themselves so that they become the primary stakeholders in this medical, social and psychological fight against leprosy.

Regarding the first strategy, in 2003 I approached the Office of the United Nations High Commissioner for Human Rights in Geneva. Many years of lobbying later, in December 2010, the United Nations General Assembly in New York unanimously adopted a resolution on the “Elimination of discrimination against persons affected by leprosy and their family members,” along with accompanying principles and guidelines. This was a historic achievement. But discrimination and stigma will not disappear of their own accord, just because of this resolution. We must make full use of it as an important weapon in our fight.

Regarding the second strategy, I would like to mention the annual Global Appeal that I launched in 2006. It calls for an end to stigma and discrimination against people affected by leprosy. Over the years it has been signed by world-renowned leaders including several Nobel laureates, leaders of leprosy-affected individuals, rights-based NGOs, faith communities, CEOs of major corporations and leading universities. Each Global Appeal has been disseminated and distributed worldwide. Global Appeal 2012 is to be signed by medical associations. I hope it will serve to sensitize your partners – medical doctors – and help to tackle the discrimination against persons with leprosy that sometimes exists in healthcare facilities.

Thirdly, I have given my full support to empower people affected by leprosy so that not only do they reclaim their dignity but also become agents of change, standing up and challenging the injustices they have suffered. For example, I helped to establish a National Forum of people affected by leprosy here in India. The National Forum provides a common platform from which affected persons can speak out and make their voices heard, and upon which they can join together in actively working to reclaim their dignity and human rights. To assist in this effort, the Sasakawa-India Leprosy Foundation has been established to support the social rehabilitation of people affected by leprosy via micro financing and scholarships, among other initiatives. Not just in India, but in many other countries, organizations of people affected by leprosy are coming to the fore. As well as making their voices heard, they are also becoming empowered in the process.

Tackling the discrimination associated with leprosy requires a united front. Only when NGOs, governments, international organizations, and the people affected themselves join hands, can we hope to end discrimination and restore dignity.

Considering the medical and social challenges that remain, where do we go from here? We must guard against complacency, or the disease will come back. We must improve operational factors to ensure that every new patient is diagnosed early and treated promptly. We must be humble enough to review our activities and ask what we could be doing better. Meetings such as this one are important occasions to share ideas and pool knowledge and experience. As Goodwill Ambassador I will work with you as best as I can to help you overcome the difficult challenges you face. By working together, we can move forward with purpose and achieve our goals. There is still much work to be done.