Molly Breitbart
"For the Community, By the Community: A New Approach to the Control of Onchocerciasis"
Onchocerciasis is a parasitic eye and skin disease infecting roughly 18 million people worldwide in 37 endemic countries. The disease leaves half a million people with visual impairment and 270,000 people blind. Nearly 99 percent of those infected live in Africa. In the early 90s, leaders of the World Health Organization from Uganda, the Sudan, Nigeria, and Cameroon attempted to address the endemic by hiring community workers to distribute oncocerciacis drugs to patients in poor and/or hard-to-reach areas. This program did not succeed because distributors were relatively unfamiliar with the socio-cultural needs and interests of the community. As a result, in 1997, the African Program for Onchocerciasis Control (APOC) led a new initiative in which members of disease-prevalent communities would themselves organize and lead drug distribution and the maintenance of health records. This second program was successful because members of the communities understood the best ways to integrate the program into their lives and gained both trust and power in a system that worked with rather than for them. This effort is one example of the strength of community voice and leadership in both the design and implementation of care. My thesis revolves around the question of how health systems acknowledge difference and look at health with a socio-cultural, population-based lens while at the same time resisting overgeneralization and providing individualized care. Allowing individual members of the community to define their own needs and become involved in their own care is one major route to understanding and appreciating difference rather than using it as a justification for social hierarchy and prejudice.