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Nippon Foundation and DPI pledge to bring dignity to leprosy affected: Global Appeal 2018

A packed audience of over 400 people at the Taj Palace (Taj Diplomatic Enclave), included several patients with leprosy, who are now cured. Addressing the gathering, Japanese philanthropist Yohei Sasakawa, Chairman of The Nippon Foundation, also the WHO Goodwill Ambassador for Leprosy Elimination since 2001 said, “ Over the last 12 years, I have worked with several groups of people, all over the world to remove stigma against leprosy. Leprosy has long been beset with deep-rooted misconceptions. Families continue to suffer discrimination and begin to lose hope. They believe that this discrimination is to be endured. This has to change.” Mr Sasakawa’s message was followed by a video message by António Guterres, the Secretary-General of the United Nations.  He said, ” Leprosy is an age-old disease which has maimed and isolated many. Millions have been cured. The stigma is harmful because if you keep leprosy hidden, you do not get access to care. We need to step up efforts, and work to ensure universal coverage.”

Global Appeal 2018 was held in partnership with Disabled Peoples’ International(DPI). Its’ global chair, Javed Abidi said, “ The disability movement at large has neglected the concerns of persons affected by leprosy. We are honoured to be a partner. We believe that  Global Appeal is a movement, and am thankful to all the global directors of DPI, who are here today to express solidarity for the cause of leprosy.” Abidi called for obsolete laws that discriminate against persons with leprosy to be declared as unconstitutional. So far, 91 Member National Assemblies (MNAs) of DPI from around the world have endorsed the Global Appeal 2018. DPI’s outreach includes 130 countries- across continents- enjoys consultative status with the UN since 1983. Dinesh Trivedi- Convenor, Forum of Parliamentarians to free India of leprosy spoke about how it was fitting that the Global Appeal 2018 was being held in tandem with the death anniversary of Mahatma Gandhi, a global ambassadors of peace and tolerance. “There cannot be a ‘vasudev kutumbakam’- India’s concept of ‘one world, if there is discrimination,” Trivedi said. (Read: 5 must-to-know facts about leprosy or Hansen’s disease)

In a powerful talk, Kate Gilmore, Deputy High Commissioner for Human Rights, United Nations said, “ Leprosy is curable if promptly detected-and properly treated, it is the least infectious of all communicable diseases,  transmission not too difficult to comprehensively prevent. The question is not one of disease management but of intentional exclusion & discrimination. A stigma clings tenaciously to Hansen’s disease, even though it is entirely preventable. This is a prejudice, not a physiological threat and hence, more inexcusable than ever in 2018.” DPI data says that there are 22 Leprosy-endemic countries where the prevalence rate of Leprosy is more than 1000 cases/year. These include  Angola, Bangladesh, Brazil, Comoros, Côte 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.

Pem Namgyal Director Program Management for WHO South East Asia read out Dr.Poonam Khetarpal Singh’s ( WHO Regional Director for South East Asia) message. “ The Global Appeal has grown in voice, since 2006, in partnership with diverse and wide-ranging organisations. We need social and legal dignity for persons with leprosy. Multi-drug therapy(MDT) is known to cure leprosy, but the prejudice against them is abetted by state & health workers.  9% of those affected by leprosy worldwide are children, which means that leprosy is still being transmitted, and cases are going undetected and untreated.”

Mr.Vagavathalli Narsappa, Chairman of the National Forum for Leprosy-Affected People in India (about 800 leprosy colonies are registered with them) shared his own story of ostracisation, after being detected with leprosy. Banished from his own village, doors would shut as he walked by, and he had to write his exams outside the exam hall, in harsh sunlight, as a student. Tarun Das, Chairman Sasakawa India Leprosy Foundation, added on a positive note, “ the youth will not fail- they will make sure that stigma and discrimination associated with leprosy are removed.” Finally, all the dignitaries were joined by representatives of Disabled People’s International, such as Wilber Torres Morales, Chair of DPI Latin America, Trevor Carroll, DPI  Chair for Asia Pacific, Henrietta Davis-Wray, DPI Director, for North America & Carribbean, Jara Julio Wilfredo Guzman , immediate past-Chair of DPI and Shudarson Subedi  DPI Regional Representative from Nepal (NFDN) in taking the Global Appeal.

Dr Tedros Adhanom Ghebreyesus, Director General WHO, added via a video message, “ Leprosy affects those with least access to health services. They need to come forward for treatment and care,  with the support of communities and partners. Let us be the generation that makes leprosy history.” The final video message for the afternoon was from Prince Zeid Ra’ad Al Hussein, High Commissioner of the UN-Human Rights Office. He said, “ Persons with leprosy don’t have access to education are employed. Neglected diseases are a feature of poverty, and we need to overcome this.” (Read: 3 myths about leprosy busted!)

Examples of obsolete acts that abet stigma against leprosy

For eg; personal laws such as  Hindu Marriage Act, Dissolution of Muslim Marriage Act, etc; which provide for “a virulent form of leprosy” as a ground for divorce, separation or annulment of marriage. Or State laws like Andhra Pradesh Prevention of Begging Act, Bombay Prevention of Begging Act, Gujarat Prevention of Begging Act and other such state laws allow detention and confinement of the affected beggars and their dependents to Leprosy asylums. Even laws pertaining to the office of a civil post in Odisha, Andhra Pradesh, Chhattisgarh, Madhya Pradesh, Rajasthan and other states municipal and panchayat raj laws disqualify the affected to hold or contest a civic post.

Press Release

Image Source: Press Release

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