Leprosy in Our Time - Medical and Social Challenges

Grassroots empowerment and networking

Around the world, different groups are working to bring an end to the stigma suffered by people affected by leprosy. In addition to long-established anti-leprosy organizations that support their cause, there has been an increase in the number of groups of people affected by leprosy working for their own self-empowerment.

ILEP (the International Federation of Anti-Leprosy Associations) traces its roots back to 1966 and the creation of a European federation of anti-leprosy associations. In 1975, organizations from North America and Japan became members, and the federation became truly international. ILEP supports medical, scientific, social and humanitarian activities for the relief and rehabilitation of persons affected by leprosy. It collaborates with the WHO and other partners.

IDEA (Integration, Dignity and Economic Advancement) is an international network of people affected by leprosy that grew out of a seminar held in Brazil in 1994. Participants included representatives from Brazil, China, Ethiopia, India, South Korea and the United States. IDEA is the first international network of individuals and organizations of those who have been affected by leprosy.

Association of People Affected by Leprosy (formerly known as National Forum India) is an umbrella organization of self-settled leprosy colonies across India. Established in 2006, it is working for the economic and social advancement of people affected by leprosy and their reintegration into society.

MORHAN has been the leading voice representing persons affected by Hansen’s disease in Brazil since the 1980s. It has been actively lobbying the government and other sectors of society to better the lives of people affected by the disease and to ensure they enjoy the same rights as every other citizen.

PerMaTa (Indonesia), ENAPAL (Ethiopia), and HANDA (China) all have people affected by leprosy at their center and engage in a broad range of activities, from advocacy and awareness campaigns to capacity-building and community empowerment.

Work camps in China, Vietnam, Indonesia and elsewhere in Asia involve groups of student volunteers spending a week or more at communities of people affected by leprosy. Living alongside the residents, they undertake construction projects, carry out repairs and provide other assistance. The results are measured in more than physical improvements. The residents, who have been living in seclusion, enjoy mixing with the students; the students learn things about themselves and the importance of bonds between people; and neighboring communities discover they have nothing to fear when they see villagers and students having a good time. Friendships form and the experience is transformational for all.

Sasakawa-India Leprosy Foundation (SILF) helps people affected by leprosy who don’t have the opportunity to work because of discrimination. It provides grant loans to fund microenterprises. It also provides educational support and works to spread correct knowledge about leprosy among the general public.

The Global Appeal

To raise public awareness of the issues, an annual Global Appeal to End Stigma and Discrimination against People Affected by Leprosy was launched in January 2006 at the initiative of Yohei Sasakawa, Chairman of The Nippon Foundation. The first Appeal was issued from New Delhi and signed by world figures including Nobel laureates Elie Wiesel, the Dalai Lama, and former U.S. President Jimmy Carter. Subsequent appeals have been endorsed by leaders of people affected by leprosy (Manila, 2007), international human rights organizations (London, 2008), faith leaders (London, 2009), corporate executives (Mumbai, 2010), heads of the world’s leading universities (Beijing, 2011), the World Medical Association and its member associations (São Paulo, 2012), the International Bar Association and its member associations (London, 2013), national human rights organizations (Jakarta, 2014), the International Council of Nurses and its member associations (Tokyo, 2015), and Junior Chamber International (Tokyo, 2016). The 2017 Global Appeal was launched in January from New Delhi, India, with the endorsement of the Inter-Parliamentary Union.

For more information about the Global Appeal, please see this link.