Patient Group Advocacy in China: Local Activism and Translocal Networks


Jie Wu

The China Journal

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Abstract: This article examines patient group advocacy across China. Drawing on a two-year ethnographic study of rare-disease patient groups, this article documents how patient groups have developed both locally based patient clusters and translocal networks to spread their advocacy across China. Patient groups’ decentered, locally based patient clusters enable parochial advocacy targeting local authorities, typically with the goal of obtaining subsidies for specialized medical treatment. Translocal networks of patient groups have provided an organizational foundation for interregional information exchange. Mutual-aid patient groups harness such networks to advocate for government support across China at a lower organizational and political cost, minimizing the risk of government repression. The article advances our understanding of cross-regional patient advocacy and changing state-society relations in China.

About the author: Jie Wu was a HYI Chinese Politics Training Program Visiting Fellow from 2018-19.