The Political is Personal: Examining the Role of Personal Connection to a Disease as an Access Point for Singledisease Interest Groups

by Lindsey Mills

From the Author:

“Approximately 133 million Americans live with a chronic illness (“The Power of Prevention”). Government funding through the National Institutes of Health and other programs are an important source of research funding for the doctors and scientists who study and treat these diseases and syndromes. I am one of those Americans and live with a disease that very few doctors specialize in and for which few treatments options exist, at least in part because of lack of funding. This experience led me to ask what lobbying strategies are effective specifically for interest groups that represent a single disease. Lobbying strategies are well studied, but less research has been done to examine the strategies used by interest groups representing smaller and very specific constituencies, such as those affected by a single disease. In “The Political is Personal: Examining the Role of Personal Connection to a Disease as an Access Point for Single-disease Interest Groups” I suggest that if a single-disease interest group can find an elected representatives with a personal connection to the disease in question the interest groups will be able to gain greater access and accomplish more of its agenda.

My question arose because of my frustration with the lack of NIH funding for the disease ME/CFS. However, while the question was informed by personal experience, academic distance allowed me to study the question in a useful manner. This examination led to an internship with MEAction in the spring of 2012. Writing the paper and completing the internship both underscored for me how important it is that patients and their families and friends speak up for government medical research funding.”

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