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Patient-led advocacy changed distribution of medical research funding

Disease advocacy organizations can systemically change the culture of public policy by reshaping funding distribution, changing the perceived beneficiaries of policies, promoting new metrics for commensuration and making cultural categories of worth increasingly relevant to policymaking, according to recent study results.

Rachel Kahn Best, PhD, a Robert Wood Johnson Foundation Scholar in Health Policy Research at the University of Michigan, constructed a longitudinal dataset with information on 53 diseases from 1989 to 2007. Data were collected on the amount of federal medical research funding, advocacy targeting and the number and characteristics of people who died each year from each disease.

Overall, diseases tied to strong advocacy organizations — which have increased from 400 large nonprofits in the early 1990s to more than 1,000 by 2003 — received millions of dollars more in research funding over the period than others whose advocates were not as strong. Advocacy groups created political pressure to have funding allocated in line with mortality rates, and, according to Best, “congressional representatives tend to view disease advocates more favorably than other lobbyists because disease advocates do not directly profit from medical research expenditures.” However, disease advocacy draws money away from diseases that affect disadvantaged groups, such as women and blacks.

“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,” Best stated in a press release. “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.”

For more information:

Best RK. Disease politics and medical research funding: three ways advocacy shapes policy. Am Sociol Rev. 2012;77:780-803.

Disclosure: This study was funded by the Office of NIH History; the UC-Berkley Science, Technology and Society Center; and Berkley Law’s Empirical Legal Studies fellowship.