Taking Part in Webinar on “Hansen’s Disease as Human Rights Issue” (2) [2021/10/14]
The second part of the webinar was devoted to a Q&A session in which I took questions from participants. The first question was from Mr. Ardhy Eboe, Secretary of PerMaTa South Sulawesi, the largest provincial branch of PerMaTa National, an Indonesian organization of people affected by leprosy. He asked me what role the Convention on the Rights of Persons with Disabilities should play in supporting persons affected by Hansen’s disease.
I responded that the convention aims to protect the rights of persons with disabilities, including those affected by Hansen’s disease and that it is the governments that have to implement it.
But we cannot just wait for our governments to act, I said, adding that it is crucially important that we ourselves use the convention as a tool in our fight and communicate it to society.
To support persons affected by leprosy in these efforts, I said, the Sasakawa Health Foundation and The Nippon Foundation are helping them build up their organizational capacity, adding: “I would like to see a society in which everyone is active, able to express their opinions to the authorities with confidence, and their contribution is valued.”
Ms. Florence Taaka, a partnership development officer of the Netherlands Leprosy Relief (NLR), asked me how WHO is dealing with stigma and discrimination against Hansen’s disease.
I noted that WHO used to deal with Hansen’s disease only as a medical issue, focusing on curing the disease. But as I found after The Nippon Foundation provided funding for WHO to distribute multidrug therapy (MDT) free of charge between 1995 and 1999, even though people were cured of leprosy, this did not mean that the stigma and discrimination they faced disappeared.
This, I said, is what prompted us to approach the United Nations to take up leprosy as a human rights issue and which culminated after seven years in the 2010 U.N. General Assembly resolution on elimination of discrimination against persons affected by leprosy and their family members, together with principles and guidelines. WHO has since been addressing Hansen’s disease not only as a medical but also as a human rights issue.
I told the webinar participants that the WHO now pays heed to my idea of seeing leprosy activities in terms of a motorcycle, namely that the front wheel represents curing the disease and the rear wheel symbolizes ending discrimination. Only when both wheels are turning at the same time will we make progress toward our destination of a leprosy-free world.
In addition to the series of six webinars, the 10-month “Don’t forget leprosy” campaign includes media briefings held online, TV and radio spots, videos featuring the WHO Goodwill Ambassador’s activities and messages, and the 17th Global Appeal to End Stigma and Discrimination against Persons Affected by Leprosy scheduled for the end of January 2022.
I look forward to taking part in these events designed to send a powerful appeal to the world: “Don’t forget leprosy.” We must not allow Hansen’s disease to be left behind, even amid the pandemic.
With Mr. Ardhy Eboe (left),