Power to People Affected by Leprosy

People who have recovered from leprosy have become a powerful voice through advocacy work to improve their lives. In India, Brazil, Indonesia and Ethiopia, they have formed a nationwide organization to address medical and social issues. In the medical field, they are working to detect new cases and provide correct information on available treatment. In the social field, they are working to eliminate discrimination, support social integration and employment, and improve public assistance. This involvement and leadership is something seldom seen in the case of other diseases.

It was in 2005 in India, the country with the highest number of leprosy patients that the Association of People Affected by Leprosy, a nationwide organization known as APAL, was established to improve their lives and restore their dignity. I recommended that Dr. P.K. Gopal serve as the first president. I saw him as a powerful advocate, not only because of his research work as a sociologist but also because of his own experience of the disease and recovery. Many became confident and positive about their future upon seeing Dr. Gopal assume leadership of the organization.

The current president, Mr. Vagavathali Narsappa , has headed APAL since 2015. Mr. Narsappa was diagnosed with leprosy at the age of ten, and his parents, fearing that it was punishment from the gods, took him to a hospital and left him there. By that young age, he had seen people with leprosy driven from their homes and abandoned, but he had never for a moment thought that it might happen to him.

After receiving treatment for two years, he recovered and returned home but his family rejected him again. This was his moment of truth. He had no other choice but to live in a colony, and unable to find a job, he was forced to beg. He began to feel that those living in the same colony were his true family and he decided to take action to improve the lives of leprosy patients and those affected by leprosy.

People who themselves have experienced the despair and isolation of leprosy can understand the suffering of other patients. I believe that they can play a leading role in finding effective solutions to various problems.

For my part, I consider myself a facilitator and a witness to the progress that is being made to improve the lives of those affected by leprosy. As WHO Goodwill Ambassador for Leprosy Elimination, when I meet with political leaders, I always make sure that I am accompanied by people affected by leprosy. I believe it is important for political leaders to listen to the voices of people affected by leprosy directly, to understand their plight, and to sit down at the same table to work together. I visit the same country, for example India, and the same area many times to see whether the agreements are actually honored and carried out. I am always moved to see the brave and self-confident people who are playing a leading role in this effort.