Patient-led advocacy has created a shift in the way the U.S. government prioritizes money for medical research and has significantly changed the way policymakers think about who benefits the most from these dollars, according to the recently released study from the University of Michigan.
In “Disease Politics and Medical Research Funding: Three Ways Advocacy Shapes Policy,” researcher Rachel Kahn Best analyzed data on 53 diseases over a 19-year period from 1989 to 2007.
Best found that 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, according to a news release.
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.
Two things from the study that stuck out to me:
“Increases in the number of nonprofits and lobbying expenditures are both significantly associated with increases in research funding, with each $1,000 spent on lobbying associated with a $25,000 increase in research funds the following year.”
Stigmatized diseases received less funding in the new political climate. I document this pattern by tracking funding for lung cancer and liver cancer. Both cancers have potentially stigmatized risk factors (smoking for lung cancer; hepatitis infection and alcohol consumption for liver cancer). Year after year, both diseases received smaller funding increases than would have been predicted based on mortality.