Rachel Best is an Assistant Professor of Sociology at the University of Michigan. In her research, she analyzes how societies define problems and marshal public resources to address them. Across a wide range of issues—diseases, homelessness, and employment discrimination—she shows how advocacy and culture create inequalities in policy.
She is currently studying a dramatic change in American politics: the emergence of diseases as interest groups. In the past 30 years, people with serious diseases have raised their voices in Congress to an unprecedented degree, organizing to demand public funding for medical research into their conditions. Their activism had unintended consequences for health policy. The government faced increasing pressure to distribute funds to diseases with the most mobilized and sympathetic patients, rather than to the research programs expected to produce the greatest improvements in public health.
Her book explains why disease advocacy emerged, how it shaped federal medical research politics, and why disease advocates tend to lobby for medical research instead of medical care. The findings demonstrate that movements’ effects go beyond whether or not they achieve their goals. Advocacy also changes how policymakers use data and which moral questions they ask.