Making ALS matter: Disease activism and disease identity in amyotrophic lateral sclerosis, 1850--2000.

摘要

This dissertation traces shifts in medical understandings and public awareness of amyotrophie lateral sclerosis from the mid-19th through late-20th centuries. Each chapter probes an aspect of the broader question: who makes diseases "important" as topics of research or targets of finding, what are the strategies they use to bring about this shift in significance, and what are the effects of such efforts?;Paralytic wasting diseases like ALS enjoyed a period of brief prominence in the late 19th century before descending into obscurity. In the mid-20th century, although extensive renegotiation of the relationship between ALS and other neurological disorders brought increasing research attention back to the disease, many of these efforts actually pushed the disease further into the shadows by implying that it could not stand on its own as a research priority. Though Lou Gehrig's diagnosis with ALS in 1939 was expected to spur research in the disease, Gehrig's name and story were instead co-opted to benefit fundraising effort in three diseases other than his actual diagnosis. At the same time, NIH funding of ALS research was concentrated on the remote South Pacific island of Guam. When stateside ALS disease advocacy movements finally emerged in the 1970s, the more successful movement had unexpectedly negative influences on both patient experience and medical research in the disease. And when ALS disease advocates in the 1980s raised the public profile of ALS by linking it with Alzheimer's Disease, such efforts positioned ALS once again as a research topic useful only as a tool to attack more important public health problems.;The history of the disease is a story of researchers, health activists, and policymakers constantly redefining this elusive entity and its relation to other public health problems---reacting to trends in research funding rather than attempting to influence those trends, using other illnesses as the basis for arguments on the importance of ALS research rather than articulating a unique, independent policy identity for the disease. These actions had a profound impact on the nature and scope of research on ALS and on the choices of patients diagnosed with the disease.