Patient-led advocacy has created a shift in the way the U.S. government prioritizes funding for medical research, according to a report from the University of Michigan that was published in American Sociological Review. Researcher Rachel Kahn Best analyzed data on 53 diseases over a 19-year period from 1989 to 2007 and 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," according to a release from the university.
The release quotes Best as saying "The downside is not every disease has this potential for strong advocacy. 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."
