Reviewing the progress made in the fight against the disease.
People with leprosy have long been subjected to discrimination. The disease is mentioned in the Bible, while in India there are references to it dating back to the 6th century B.C.
There is a history of discarding people with leprosy on islands. Here in Japan we have seen how people with the disease were isolated on island sanatoriums such as Nagashima Aiseien and Miyako Nanseien.
With the advent of multidrug therapy (MDT) in the 1980s, leprosy became a curable disease. Since then, some 16 million people have been cured. Currently there are less than 250,000 new cases of the disease annually. I first believed there was a possibility to rid the world of leprosy when a target was set to reduce the prevalence of the disease to less than 1 case per 10,000 people, thereby eliminating it as a public health problem. An additional factor was the development of the blister pack. This made it easy for patients unfamiliar with medicines to take the stated dose.
At an international conference on leprosy elimination held in Hanoi in 1994, The Nippon Foundation pledged to distribute MDT free of charge in every country for five years. Today, MDT continues to be provided free of charge, thanks to the Novartis Foundation for Sustainable Development.
|Addressing the centenary event at Tama-Zenshoen|
I often use the example of a motorbike in talking about leprosy. The front wheel represents curing the disease; the rear wheel symbolizes eliminating discrimination.
Until recently, the focus had been on the front wheel, with the effort centered on the WHO. Of 122 countries that had yet to eliminate leprosy as a public health problem in 1985, 119 have now done so. Of the three remaining countries, I believe that Nepal and Timor Leste will pass this milestone in the next year or two, leaving only Brazil.
Wherever I go, I deliver three simple messages: leprosy is curable, treatment is free; and discriminating against people with the disease is wrong. I impress upon leaders the importance of keeping focused on leprosy. I also take every opportunity to talk to the media. In my office I must have two volumes of newspaper cuttings from India alone.
Fortunately, in the fight against leprosy, the WHO, individual governments and international NGOs are all pulling in the same direction. I believe that one day leprosy will be a thing of the past. However, it remains the case that many people who once had leprosy continue to face discrimination . even after being cured . because of society's deep-seated prejudices.
In 2003, I drew this issue to the attention of the Office of the UN High Commissioner for Human Rights and the back wheel of the motorcycle began to turn. Last year, the Japanese government tabled a resolution at the Human Rights Council calling for an end to discrimination against persons affected by leprosy and their families, which was adopted unanimously. The next step is to finalize guidelines for ending discrimination, a process that is currently under way. Ultimately, I would like to see a resolution adopted at the UN General Assembly.
Why didn't a human rights problem on this scale attract attention until recently? I think there are two reasons. First, communities of people affected by leprosy have tended to be isolated from the social mainstream. And second, for so many centuries, leprosy has been viewed as a fearful disease, hereditary, God's punishment… it's as if these ideas are in human DNA.
In India, I supported the establishment of the National Forum, which has created a network of people affected by leprosy and given them a platform from which they can engage with the authorities. I have also created the Sasakawa India Leprosy Foundation, which supports self-help efforts of people affected by leprosy through grant giving. More recently, The Nippon Foundation has begun a project with the ASEAN Secretariat to encourage inclusion of persons affected by leprosy in the agenda of leprosy control and rehabilitation work.
I believe we will reach our ultimate destination of a leprosy-free world only when both the front and back wheels of the motorcycle are turning at the same speed. We are moving in the right direction, but we still have a long way to go.
AUTHOR: Yohei Sasakawa
Yohei Sasakawa is Chairman, The Nippon Foundation, WHO Goodwill Ambassador of the Elimination of Leprosy, and Japanese Government Goodwill Ambassador for the Human Rights of People Affected by Leprosy.
There are 13 leprosy sanatoriums in Japan. As of May 2009, there were 2,568 residents with an average age of 80.2.
This is an edited and abridged version of a speech given by Yohei Sasakawa on September 28, 2009, to mark the 100th anniversary of the founding of National Sanatorium Tama-Zenshoen in Tokyo. For more details about Tama-Zenshoen, see page 8.