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The Enculturated GeneSickle Cell Health Politics and Biological Difference in West Africa$
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Duana Fullwiley

Print publication date: 2011

Print ISBN-13: 9780691123165

Published to Princeton Scholarship Online: October 2017

DOI: 10.23943/princeton/9780691123165.001.0001

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The Work of Patient Advocacy

The Work of Patient Advocacy

(p.221) Chapter Seven The Work of Patient Advocacy
The Enculturated Gene

Duana Fullwiley

Princeton University Press

This chapter further explores issues of patients' tenacity to shape science, through advocacy on an international level, and investigates the ways that making a disease public in Africa often entails locating it within discourses of humanitarian “crisis,” emergency, and global health prioritization. In this way, tireless patient advocates of African origin living in France created the sickle cell disease umbrella organization of the International Organization for the Fight against Sickle Cell (OILD), which succeeded in getting sickle cell anemia the attention of the World Health Organization and the United Nations in 2008. The OILD's strategy of making sickle cell visible to these multilateral institutions consisted of linking the disease to other pressing global health problems for development through means that often deployed uncertainty as “data.”

Keywords:   patient advocacy, global health, International Organization for the Fight against Sickle Cell, OILD, multilateral institutions, global health problems

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