Rachna Kumari of Munger in Eastern India’s Bihar state is not yet 30. But she's already been married at 18, abandoned by her husband after she was diagnosed with leprosy and become an award-winning advocate of the disease. She has traversed a long road. And this week she undertook another step in her journey to fly to Manila, Philippines, as a delegate at the 20th International Leprosy Congress (ILC).
Forty years ago, Yohei Sasakawa saw his father moved to tears after meeting and witnessing the suffering of people affected by leprosy – also known as Hansen’s disease. Not only did the patients have a physical illness, but they also suffered from social exclusion and discrimination. It made the young Sasakawa vow to work for the elimination of leprosy from the world – just as his father had been doing.
Stronger government action to fight stigma and discrimination, more government funding for health and non-health support programmes, and a larger role for people’s organisations in developing policy towards Hansen's disease treatment and eradication are still needed for eliminating the disease.
The Global Forum of People’s Organisations on Hansen’s Disease, which was attended by members of people’s organisations from 23 different countries, wrapped up in Manila, Philippines, today Sept. 10 after four days of discussion and deliberation.
The main outcome was a set of recommendations, which included participants stating that those affected by the disease should have more inclusive roles in the global campaign against leprosy.
Octogenarian Yohei Sasakawa has travelled to more than 90 countries across the globe; from areas of conflict, to the jungles of Brazil, shaking hands, hugging and washing the feet of Hansen’s disease-affected people. His message is simple: Stop stigmatisation and eliminate the disease.
Increasing awareness of the continuing existence of Hansen’s Disease (leprosy) is critical to sustaining effective public health efforts against the disease, eliminating the social stigma associated with it, and halting its transmission.
Professor Ai Kurosaka remembers the day she first interacted with a person affected by Hansen’s disease. It was 2003 and Kurosaka, then a graduate student of sociology at the Saitama University in Japan, had been assigned to interview ex-patients and their family members to document what kind of discrimination they faced. It was a very difficult task because nobody wanted to speak or identify themselves.
Organisations supporting people affected by Hansen’s disease (leprosy) have social rather than capitalist aims, but they need to take a business-minded approach to their work if they wish to be sustainable, experts at a global conference in Manila, Philippines said.
Organisations of people affected by Hansen’s Disease or leprosy agree that a global network of volunteer groups is key to eradicating the disease, but concrete steps need to be taken to move the idea from an often-discussed concept to a reality.
Being part of a platform where leprosy-affected people from all over the world can freely interact, exchange and share opinions, ideas, experiences and strategies was always something Tasfaye Tadesse dreamt of.
Professor Takahiro Nanri is the executive director of the Sasakawa Health Foundation, co-organiser of the Global Forum of People’s Organisations on Hansen’s Disease, which will take place from Sept. 7 to 10 in the Philippines.