Dialysis and the Politics of Self-care: The Enduring Effects of Barriers Imposed on Home Dialysis.

Abstract

Home dialysis can offer persons with kidney failure a more individualized, flexible, and independent method of dialysis compared with in-center hemodialysis (ICHD), with similar survival outcomes. Home dialysis is also generally less expensive for payers. Despite its advantages, home dialysis remains significantly underused in the United States, particularly among patients with low socioeconomic status. This article addresses current disparities in access to dialysis by examining the history and politics of home dialysis from the 1960s to the present, drawing on hundreds of archival records from dialysis organizations, for-profit dialysis companies, patient advocacy networks, public media, and congressional hearings. The enactment of the Medicare End-Stage Renal Disease (ESRD) program in 1972 was a monumental victory not just for patients receiving dialysis but also for the growing dialysis industry. In the first 4 years of the program, the rate of home dialysis among ESRD patients decreased from 43% to 20% as patients increasingly dialyzed at for-profit centers. This decline was attributed to financial disincentives, a changing patient demographic, and increased availability of ICHD. By the mid-1970s, expenses for the ESRD program had grown so high that the government turned to home dialysis as a cost-saving measure. Low-income, marginalized patients soon found themselves at the center of a debate between dialysis companies, nonprofit dialysis organizations, and government officials over who was capable of home dialysis. These debates raised questions about the ethics of for-profit medicine, patient representation in policymaking, and the potential for discrimination in incentive models. Despite implementation of financial incentives for home dialysis in 1978 and 1983, home dialysis remained underused, pointing to greater socioeconomic barriers to home dialysis access and gaps in addressing patient needs.