Going for the Cure: Patient Interest Groups and Health Advocacy in the United States

Abstract

Citizen groups, though celebrated during their sudden arrival on the lobbying scene, are vastly outnumbered by groups representing elite, occupationally based interests. Sensitive to the odds that nonoccupational groups face, this study asks what factors have allowed patient groups to form and become active in federal politics. Using three distinct data sets--a survey of patient groups, content analysis of group websites, and in-depth interviews with group representatives and policy makers in Washington, DC--this study assesses the activities of patient groups in the United States and argues that patient advocacy organizations garner stability from the relatively easy provision of selective and solidary benefits. Larger patient groups are especially likely to make use of these structural advantages to pursue congressional lobbying strategies. However, even these groups seek out noncompetitive, distributive political environments. Moreover, the study finds that patient groups rarely form coalitions across diseases, forgoing the potential to collectively speak for shared patient interests.