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Don’t forget leprosy
Some people affected by leprosy and their families find that COVID-19 is exacerbating the discrimination they already experience because of leprosy.
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Alverno Hospital staff member assists a leprosy patient to cast his vote in the Singkawang mayoral election in Singkawang city, West Kalimatantan. (JP/Severianus Endi)
E
ach year on Jan. 30 we observe the World Leprosy Day. Since 2006, I have issued an annual Global Appeal to End Stigma and Discrimination against Persons Affected by Leprosy, supported by influential individuals and organizations around the world. During the coronavirus pandemic, this call to eliminate stigma and discrimination is more important than ever.
Leprosy, also known as Hansen’s disease, is a chronic infectious disease caused by the bacillus Mycobacterium leprae. It mainly affects the skin and peripheral nerves and is said to be one of the oldest diseases in human history. Each year, around 200,000 new cases are reported globally.
Today an effective treatment exists in the form of multidrug therapy (MDT) and with early detection and treatment, the disease can be cured without complications. But if treatment is delayed, leprosy can cause progressive impairment and lead to permanent disability.
Today there are an estimated 3 to 4 million people living with some form of disability due to leprosy. This, together with deep-seated fears and misperceptions about the disease, has subjected persons affected by leprosy and even their family members to severe discrimination, which continues to this day.
Since becoming WHO goodwill ambassador for leprosy elimination in 2001, I have visited some 120 countries to see the situation for myself. This has led me to think of leprosy in terms of a motorcycle: The front wheel symbolizes curing the disease, and the back wheel represents eliminating discrimination. Unless both wheels are turning together, we will not reach our ultimate goal of zero leprosy.
As regards the front wheel, efforts against the disease, including new case detection, have been badly disrupted by the spread of the novel coronavirus and efforts to prevent transmission. In 2020, the number of new cases reported was down some 37 percent year on year, according to the WHO, largely due to the impact of COVID-19.
Concerning the rear wheel, I have worked hard to have leprosy recognized internationally as a human rights issue since the early 2000s, when I first approached the Office of the UN High Commissioner for Human Rights. One result has been the adoption in 2010 of a UN General Assembly on elimination of discrimination against persons affected by leprosy and their family members.
But the real measure of success will be when principles and guidelines accompanying the resolution are fully implemented. Because of the pandemic, however, awareness-raising efforts in many areas have stalled, and some people affected by leprosy and their families find that COVID-19 is exacerbating the discrimination they already experience because of leprosy.
This is why last August I launched a campaign called “Don't forget leprosy” to ensure that leprosy is not ignored, even amid the pandemic, and to stress the importance of early detection and treatment, and also the need to eliminate stigma and discrimination.
The term “don't forget” covers many things: that leprosy still exists; that people affected by leprosy and their families still face stigma and discrimination; and that there are healthcare professionals doing their best in difficult circumstances to provide needed services.
It is my hope that people all over the world will join this campaign and speak out from their own perspective on why leprosy should not be forgotten. Individual voices may only carry only so far, but together they can be heard everywhere.
The past half-century has brought us closer to a world without leprosy, but our work is not yet done.
It is important that we reach as many people as possible with the message "Don't forget leprosy" so that we can continue to make progress. I sincerely hope that you will add your voice to this effort.
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The writer is WHO goodwill ambassador for leprosy elimination, Japanese government goodwill ambassador for the human rights of persons affected by leprosy and chairman of the Nippon Foundation.
