Yohei Sasakawa.  

Yōhei Sasakawa, who is chairman of the Nippon Foundation, and the World Health Organization Goodwill Ambassador for Leprosy Elimination, was in India recently as part of the “The Global Appeal-2018”. The event aims to end the discrimination faced by people affected by leprosy, and their families, worldwide. Mr. Sasakawa, who is also Japan’s Ambassador for the Human Rights of People Affected by Leprosy, spoke to The Hindu about the challenges before India, which accounts for the largest number of cases of leprosy in the world, and his organisation’s partnership in fighting the battle. Excerpts.

Leprosy is an age-old disease, described in the literature of ancient civilisations. Throughout history, people afflicted have often been ostracised by their communities and families. The first cure for leprosy emerged in the 1940s, but the important breakthrough came in the early 1980s with the introduction of a highly effective treatment, multi-drug therapy (MDT).

In 1991, the WHO set a target to eliminate leprosy as a public health problem, defining elimination as a prevalence of less than 1 case per 10,000 population. Since 1995, the WHO has provided MDT free of cost to all leprosy patients in the world. Free MDT was initially funded by The Nippon Foundation and since 2000, is being made available by donations through an agreement with Novartis. More than 17 million leprosy patients have been treated with MDT over the past 30 years.

Although the annual number of new cases has dropped dramatically since the pre-MDT days, there are still some 200,000 new cases reported around the world each year. There were 214,783 new leprosy cases registered globally in 2016, according to official figures from 145 countries in the world. Of these, 11 countries, among them India, Brazil and Indonesia, reported more than 1,000 patients, among them India, Brazil and Indonesia, with India accounting for more than 60% (135,585 cases) of all new cases.

Elimination of leprosy as a public health problem, at the national level, has been achieved by almost every country and we believe that 2018 could be a milestone year if Brazil too reaches this point. It would mean every country has now reached the elimination threshold of less than 1 case per 10,000 population.

But this does not mean that the fight against leprosy is over. That’s why this year, our partnership with Disabled Peoples’ International (DPI) and its Global Chair, Javed Abidi, is very significant. So far, 91 Member National Assemblies (MNAs) of DPI from around the world have endorsed the Global Appeal 2018.

The challenge is two-fold. There is the medical dimension of continuing transmission of leprosy, with some 200,000 new cases being diagnosed each year. There is also the social dimension in which stigma and discrimination impact the lives of people diagnosed with leprosy and even their families. Fear of discrimination can be a reason why people hesitate to seek treatment, which means they could be passing the disease to others and also putting themselves at risk of developing life-long disabilities.

Leprosy affects men and women, adults and children. But factors such as gender discrimination can mean that women and girls are impacted disproportionately by the consequences of leprosy. Children accounted for around 9% of new cases in 2016 and there is now a concerted effort to reduce the number of leprosy cases among them to zero by 2020.

India accounts for the largest number of cases of leprosy in the world. It is now making concerted efforts to detect and treat cases early with special leprosy-case detection campaigns and other activities. There is also momentum to address outdated legislation that discriminates against persons affected by leprosy. The progress India makes in tackling leprosy will have a significant impact on the global situation.

There is yet no prophylactic vaccine available for leprosy, so early detection and treatment with MDT form the cornerstone of efforts against the disease. Ensuring that all cases are diagnosed and treated promptly remains a challenge among hard-to-reach and marginalised populations. Further efforts at educating the public about leprosy are needed so that people don’t fear coming forward to seek treatment. Those who have been treated and cured do not face discrimination in their daily lives.

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