Disease advocacy has changed how medical research is funded

October 1, 2012
Laurel Thomas

Stethoscope on US Paper Currency isolated on white (stock image)ANN ARBOR—Patient-led advocacy has created a shift in the way the U.S. government prioritizes funding for medical research and has significantly changed the way policymakers think about who benefits the most from these dollars, says a public health researcher at the University of Michigan.

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 to 2007.

Best, a U-M School of Public Health fellow in the Robert Wood Johnson Foundation Scholars in Health Policy Research Program, 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.”

“The downside is not every disease has this potential for strong advocacy,” Best said. “In addition to things like lung cancer and liver disease, which lose out because of the social stigma tied to those diagnoses, there are diseases like pancreatic cancer, whose patients often don’t live very long after diagnosis and, therefore, don’t have time to tell their stories.

“In the years I studied, the National Institutes of Health budget was expanding rapidly. But in more recent years, we’ve seen a leveling off of what funding is available. It will be interesting to see if, after the time period I studied, disease advocates have become more competitive in their efforts to secure a share of the dollars.”

Best also found that advocacy groups created political pressure to have funding allocated in line with mortality rates. After activists mobilized against an initially weak response to AIDS, it eventually received more research funding than any other disease.

Subsequently, advocates for other diseases protested that they were receiving fewer “dollars per death.” Policymakers then pressured the NIH to bring the funding distribution more in line with mortality, even though NIH officials preferred to set priorities based on scientific criteria.

To reach her conclusions, Best collected data from the NIH and the Department of Defense–Congressionally Directed Medical Research Programs to determine dollars spent on various diseases. She gathered tax data on disease-related nonprofits and collected data on congressional hearings at which disease advocates gave testimony. She also reviewed mortality data for the 53 diseases that ranged from various cancers and influenza to hypertension and diabetes.

The research article is available by request for members of the media. For a copy of the full study, contact Daniel Fowler of the American Sociological Association at (202) 527-7885 or pubinfo@asanet.org.


The University of Michigan School of Public Health has been promoting health and preventing disease since 1941, and is ranked among the top public health schools in the nation. Whether making new discoveries in the lab or researching and educating in the field, SPH faculty, students and alumni are deployed around the globe to promote and protect health.

The American Sociological Association, founded in 1905, is a nonprofit membership association dedicated to serving sociologists in their work, advancing sociology as a science and profession, and promoting the contributions to and use of sociology by society. The American Sociological Review is the ASA’s flagship journal.

The Robert Wood Johnson Foundation Scholars in Health Policy Research program is intended to foster the development of a new generation of creative thinkers in health policy research within the disciplines of economics, political science and sociology. The program brings together talented individuals—each rooted in one of the three disciplines—to learn about health, health policy and the perspectives of the other two disciplines. Its hope is that the scholars will pursue careers within their disciplines, making important research contributions to future health policy in the United States.