The current year should see the elimination of leprosy as a "public health problem" -- a status prevalent in only one country -- but a lot remains to be done to restore the rights and dignity of the affected persons, says Yohei Sasakawa, the Japanese head of The Nippon Foundation, which for 12 years has annually been launching Global Appeals to end the human rights violations of the leprosy-affected.
The beauty of the Global Appeal -- the fourth to be launched from India, this time in collaboration with Javed Abidi's Disabled Peoples' International (DPI) -- is that it doesn't seek donations. Rather, the role of the partners is to lend their support to the movement to end the discrimination and stigma by raising awareness of the issue through endorsing the appeal.
"Globally speaking, we think 2018 may be a milestone year for leprosy elimination. Only one country -- Brazil -- has yet to eliminate leprosy as a public health problem and it is being said that Brazil may do so this year," Sasakawa, the WHO Goodwill Ambassador for Leprosy Elimination, told IANS in an email interview from Tokyo, ahead of World Leprosy Day (January 30).
According to the WHO, leprosy is considered eradicated as a "public health problem" if there is less than one case per 10,000 population.
"If this happens, then every country in the world will have eliminated leprosy as a public health problem at the national level. We would like to use this milestone year to push for further progress against the disease at the sub-national level and seek a resolution to the human rights issues that surround leprosy by raising awareness through information and education," Sasakawa said.
Interestingly, in 2005, the year before the first Global Appeal was launched -- from New Delhi -- India achieved the goal of eliminating leprosy as a "public health problem" -- "something that many people said would be impossible", he said.
Although India still has the world's largest number of leprosy patients, "this achievement was a major breakthrough and can be seen as a turning point in the fight against leprosy. This coincided with a growing sense within The Nippon Foundation and elsewhere that if leprosy was truly to be defeated, we should not focus on the disease as a health issue only, but also tackle it as a human rights issue, given the stigma and discrimination that people affected by the disease face," Sasakawa added.
One of the positive outcomes of the past 12 years of issuing the Global Appeal is how persons affected by leprosy in various countries now have the confidence to speak out publicly, while organisations representing them have been strengthened. Another significant outcome has been that various international NGOs have become more aware of the issue of leprosy.
"The good news is that there is an effective cure for leprosy, and once it is properly treated, it can be completely cured within one year," Sasakawa said, adding: "But it is important that cases are diagnosed early and treated promptly to prevent the disease from progressing and causing permanent disability."
Fear of discrimination is one reason why people may hesitate to seek treatment, which means they may be transmitting the disease to others. "This is why initiatives such as the Global Appeal are important to raise awareness and reduce discrimination and remove barriers in the way of people seeking medical help," Sasakawa pointed out.
Speaking about The Nippon Foundation's collaboration with the Disabled Peoples' International (DPI), he said they "are in full partnership in endorsing the latest Global Appeal. The two organisations are both committed to joint action to achieve our common goal -- that is to achieve of an inclusive society where everyone's rights are respected and can explicitly participate in society."
On his part, Abidi, the DPI's Global Chair, said: "Leprosy is one of the oldest diseases known to mankind and people affected by it continue to be rejected and neglected by society due to its outdated image of being contagious and disfiguring. However, today it is curable with antibiotics. We need to rise above the social, economic and legal discrimination that still persists for people affected by this disease."
Today, there are 22 leprosy-endemic countries where the prevalence rate of the disease is more than 1,000 cases/year. These include Angola, Bangladesh, Brazil, Comoros, Côt' d'Ivoire, Democratic Republic of the Congo, Egypt, Ethiopia, Micronesia (Federated States of), India, Indonesia, Kiribati, Madagascar, Mozambique, Myanmar, Nepal, Nigeria, Philippines, South Sudan, Sri Lanka, Sudan and Tanzania.
About 200,000 new cases of leprosy are detected each year worldwide, and there are still several active leprosy colonies in the world, where people do not have access to basic facilities and continue to be seen as outcasts.
(Vishnu Makhijani can be contacted at vishnu.makhijani)