Rachel Kahn Best, “Disease Politics and Medical Research Funding: Three Ways Advocacy Shapes Policy,” American Sociological Review, 2012

Beyond the Ribbons

Color-coded awareness ribbons abound these days. Even NFL football players wear pink gear during October to support breast cancer awareness. But, as Rachel Kahn Best reveals in the American Sociological Review (October 2012), this awareness has accomplished far more than selling ribbons and staging fundraising walks—it’s transformed how government funding for disease research is distributed in the United States.

Using data on federal medical research funding for 53 diseases between 1989 and 2007, Best shows that advocates for single diseases not only secured increased funding for their causes, but also changed how decisions are made to fund medical research. Because these efforts redefined the beneficiaries of medical research funding as patients rather than researchers, policymakers needed new metrics to make funding decisions.  A focus on “dollars per death” and “big killers” emerged, making mortality a primary measure for distributing research funding among diseases. This has provided a seemingly rational, fair, statistically-based—and appealing—way to make funding choices.

But the shift toward thinking of patients as the beneficiaries of medical research funding has also brought stigma and the relative “deservingness” of patients front and center. Some diseases, like muscular dystrophy, appear to have “innocent” victims, ill through no fault of their own. But because those with lung or liver cancer may suffer after making arguably poor choices, such as smoking or drinking, they (and their diseases) are seen as less deserving of research funds. Best’s analyses demonstrate that, indeed, such stigmatized diseases have generally received less research money in recent years.

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