Disease Politics and Medical Research Funding

Abstract

In the 1980s and 1990s, single-disease interest groups emerged as an influential force in U.S. politics. This article explores their effects on federal medical research priority-setting. Previous studies of advocacy organizations' political effects focused narrowly on direct benefits for constituents. Using data on 53 diseases over 19 years, I find that in addition to securing direct benefits, advocacy organizations have aggregate effects and can systemically change the culture of policy arenas. Disease advocacy reshaped funding distributions, changed the perceived beneficiaries of policies, promoted metrics for commensuration, and made cultural categories of worth increasingly relevant to policymaking.

RETRACTED: In Sickness and in Health? Physical Illness as a Risk Factor for Marital Dissolution in Later Life

“…Levels of research funding, positive media attention, and societal support vary across conditions and illnesses (Best 2012;Kedrowski and …”

Affective Economies and the Politics of Saving Babies’ Lives

“…As Mark Nichter and Elizabeth Cartwright (1991) point out, affective incitements to "save the children" perpetuate a politics of exclusion insofar as they deflect attention from other critical issues. Rachel Kahn Best (2012) terms this the distributive effect of advocacy, suggesting that advocacy efforts shift the distribution of political and economic benefits toward groups that are more likely to organize. The distributive effect of advocacy has real fiscal and social consequences.…”

American Exceptionalism Revisited: Tax Relief, Poverty Reduction, and the Politics of Child Tax Credits

“…In particular, there has been a new appreciation for the process through which policy legacies exert a cultural influence that shapes and constrains later actors attempting to make significant policy changes (Best 2012;Brown 2013;Pedriana and Stryker 1997;Schneider and Ingram 2005;Skrentny 2006;Steensland 2008). The dominant approach focuses on how particular target populations or cultural categories become institutionalized through policy and shape who policymakers and the public see as worthy of benefits.…”

“…Steensland (2008), for example, documents the inability of U.S. policymakers to introduce a guaranteed annual income program in a relatively favorable environment because of concerns over giving unrestricted cash benefits to the "undeserving poor." Similarly, Best (2012) notes that policy changes affecting how medical research was funded eventually led to less support for diseases perceived to be related to poor lifestyle choices (i.e., where the affected are "unworthy") relative to those unrelated to personal decisions.…”