Embodied contradictions, structural power: Patient organizers in the movement for global health justice

Apoorva Gomber, Eunice Owino, Moses Echodu, Anu Gomanju, Paladie Mategeko, Lauren Brown, Jonathan D. Shaffer

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The current regime of global health governance ensures three things remain true. First, it ensures that the capital allocated to systems of effective caregiving remains deeply insufficient for the health needs of the vast majority of the people in the world. Indeed, at least half the world lack access to essential health services. Second, the fragmented caregiving systems that do exist are largely governed by global institutional philanthropy and their NGOs, usually from the U.S. or Europe, and deploy a logic of “cost-effectiveness”–a race to the bottom in terms of care quality in the name of “efficiency”. Third, this regime of frag- mented charity care in impoverished regions of the Global South often dampens the political aspirations of patients, healthcare providers, and Ministry of Health planners. Sights get narrowed; expectations are reined in because budgets are assumed to be fixed. Failures of imagination combine with deep socialization for scarcity such that substantive change feels insurmountable.

Where do we find hope given this bleak picture? We, the authors, find hope in the fights waged by our fellow patient-organizers. Patient organizers are people living with disease, and those who stand in solidarity with them, who choose to build organizing campaigns and power within a broader constituency to win shared goals. They are central in driving what sociologists have called embodied health movements.