“Don’t forget leprosy”

The last Sunday in January is World Leprosy Day. Since 2006, I have issued an annual Global Appeal calling for an end to stigma and discrimination against persons affected by leprosy, endorsed by a different set of individuals and organizations each year. During the coronavirus pandemic, I believe 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 an estimated 3 to 4 million people are 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.
These overseas missions have 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 leprosies.

　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% year on year, with Nigeria experiencing a decrease of some 40%, 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 by the UN General Assembly of a resolution on the 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 and those affected by the disease are not ignored, even amid the pandemic, and to stress the importance of early detection and treatment, as well as 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 healthcare professionals are doing their best in difficult circumstances to provide needed services.

I hope that people all over the world will join this campaign and speak out from their perspectives 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. If we are to continue to make progress, we need people all over the world to get involved in the “Don’t forget leprosy” campaign and speak out from their perspective on why we cannot afford to neglect leprosy and those affected by the disease.

As individuals, our voices only carry so far, but together we can make ourselves heard everywhere. I sincerely hope that you will add your voice to this effort.

Yohei Sasakawa
WHO Goodwill Ambassador for Leprosy Elimination, Japanese Government Goodwill Ambassador for the Human Rights of Persons Affected by Leprosy and the Chairman, The Nippon Foundation