Over the past 30 years, policy around medical research funding has shifted from engaging the research community to engaging constituent patient groups. Specifically, single-disease interest groups have emerged with powerful voices that influence U.S. politics.
This article examines 53 diseases over 19 years to better understand how disease advocacy has impacted funding distributions, changed the perceived beneficiaries of policies, promoted metrics for commensuration, and made culture categories of worth more relevant to policy-making. The study used data on federal medical research funding, mortality data, disease nonprofits data, congressional appropriations hearings, and witness testimony.
Understanding the effects of the emergence of single-disease interest groups demonstrates the changes beyond direct benefits and the impact and role of advocacy.