Disease Campaigns and the Decline of Treatment Advocacy

In the past fifty years, disease advocacy organizations have multiplied and gained political influence, but they have often been reluctant to ask the government to intervene in health care provision. This article asks why. Using original quantitative and qualitative data on the goals and political claims of over one thousand organizations from 1960 through 2014, I find that many early disease advocacy organizations prioritized health care access. But unfavorable political climates discouraged new organizations from focusing on access to treatment. When health care became particularly controversial, even organizations with health care-related missions refrained from pursuing this goal politically. Eventually, politically active organizations began to drop treatment provision from their missions. Over the decades, the troubled politics of health care reshaped the field of disease advocacy, diminishing its focus on medical treatment.