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.
- Single-disease interest groups secured direct benefits, as demonstrated by a significant association between the increase in the number of nonprofit and lobbying expenditures, and the increase of research funding.
- Distributive changes were also secured. The results tentatively support that disease advocacy draws money away from diseases affecting disadvantaged groups, including patients’ race and gender.
- Disease advocacy changed the political meaning of medical research, contributing to systemic effects. Mortality became a metric for commensuration, perceived beneficiaries of medical research became individual patients, and moral judgments about deservingness became relevant to funding deliberations.
Understanding the effects of the emergence of single-disease interest groups demonstrates the changes beyond direct benefits and the impact and role of advocacy.