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Open Access Publications from the University of California

Illnesses as Interests: The Rise of Disease Advocacy and the Politics of Medical Research

  • Author(s): Best, Rachel Kahn
  • Advisor(s): Hout, Michael
  • et al.

In the past 30 years, people with serious diseases have organized politically to an unprecedented degree. They founded hundreds of nonprofits, launched fundraising drives, publicized ribbons and walks, and lobbied Congress for funding for research into their conditions. In the first longitudinal study of the field of disease social movements, this dissertation asks why disease advocacy expanded so quickly and how it changed the politics of medical research funding.

I combine quantitative and qualitative data to track the emergence of disease advocacy and document its effects. For 53 diseases from 1989 to 2005, I collected data on the advocacy targeting each disease, the number and characteristics of the people each disease killed, and the amount of federal medical research funding for each disease. I combine statistical analyses with qualitative analyses of congressional testimony, reports, and secondary sources.

Studying the emergence of a field of interest groups allows me to test competing theories about the causes of group emergence and the political effects of advocacy. First, I ask how diseases became an established category for interest group politics. I find that changes in science, medicine, and the experience of illness laid the groundwork for the emergence of disease advocacy. But disease advocacy organizations did not proliferate until after the AIDS and breast cancer movements institutionalized a model that diffused rapidly across diseases. These findings suggest that to understand how forms of organizing emerge, we need to look at processes of social movement spillover and the diffusion of organizational forms.

Second, I ask how the emergence of disease advocacy changed the politics of medical research funding. Previous research on the political outcomes of advocacy has focused almost exclusively on whether movements achieve benefits for their constituents. I find that the effects of disease advocacy went far beyond simple increases in research funding for organized diseases. Disease advocacy reshaped the funding distribution, shifting money away from diseases that primarily affect women and racial minorities. Disease advocacy also changed the perceived beneficiaries of policies, introduced metrics for commensuration, and made cultural categories of worth newly relevant to policymaking. These findings highlight movements' cultural effects on politics.

Third, I ask whether disease movements influenced each other's effectiveness. Researchers generally examine social movements in isolation. But since movements may fight for space on the government agenda or create political opportunities for each other, their outcomes are unlikely to be independent. As disease advocacy expanded, some critics worried that organized diseases would siphon funds from less-organized diseases in a zero-sum game. I find that on the contrary, disease advocacy was synergistic, with gains spilling over across diseases. An analysis of congressional debates suggests that particularistic politics led to increasing budgets by creating new constituencies and by expanding the boundaries of the competition for funds. These results demonstrate that to understand social movement outcomes, researchers must consider their interactions.

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