Fellow Since 1999
Associação de Anemia Falciforme do Est. de São Paulo
This profile was prepared when Berenice Assumpção Kikuchi was elected to the Ashoka Fellowship in 1999.
The New Idea
Berenice Assumpção Kikuchia is the first and perhaps the only person working in Brazil in a comprehensive way to raise awareness of and provide treatment for sickle cell anemia in the Afro-Brazilian community. She is creating reforms and information-distribution techniques to combat ignorance and bridge the gap between already-existing capacities to diagnose and treat the disease, and the people who suffer from it. Berenice has drafted legislation that mandates diagnostic testing and treatment. She has identified and established important alliances for further lobbying and to secure implementation of the law. And by creating associations of people who are afflicted with the disease and other family members, she has created support and disease management groups that are springing up widely.Berenice has also made a link between the disease and cultural assimilation issues. Sickle cell is a disease of poor black people (though, in multi-racial Brazil, it is occurring more and more in people who look white). All of her educational strategies are designed to build self-esteem and identity among people of African descent. From the beginning, Berenice has been focused on the global aspect of sickle cell anemia and the ignorance that surrounds it. She aspires to spread her strategies wherever the disease exists, as evidenced by the translation of her pamphlets into Spanish and English, and by her travels to other countries to form partnerships.