WASHINGTON, D.C.—Patient-led advocacy has created a shift in the way the U.S. government has prioritized funding for medical research, and significantly changed the way policymakers think about who benefits the most from these dollars, a University of Michigan School of Public Health fellow in the Robert Wood Johnson Foundation Scholars in Health Policy Research Program found.
In “Disease Politics and Medical Research Funding: Three Ways Advocacy Shapes Policy," a paper published in the October issue of the American Sociological Review, Rachel Kahn Best analyzed data on 53 diseases over a 19-year period from 1989-2007.
She found that those diseases tied to strong advocacy organizations received millions of dollars more in research funding over the period than others whose advocates were not as strong. She also found an increasing number of these organizations, from about 400 large nonprofits working on disease advocacy in the early 1990s to more than 1,000 by 2003.
In addition, Best noted another fundamental shift in policy brought about by advocacy. Where policymakers once focused on providing dollars to the scientists who made the best case for funding—with the general population thought of as the beneficiaries of their research—the government began to think of patients with particular diseases as the recipients of the research funds. This resulted in funding based on “perceived moral worthiness."