Mother Teresa's Waiting Room
Passivity and deference to scientific experts and government officials are out; pub-
licity and in-your-face confrontation are in. —Rebecca Dresser1
EVERY SPRING, in the Rayburn House Office Building in Washington, D.C., public witness testimony begins before the House subcommittee that allocates medical research funding to the National Institutes of Health. The room where the hearings are held has long been dubbed "Mother Teresa's Waiting Room" because of the hundreds of sick and afflicted patients who come to testify, along with celebrities and lobbyists. So many people come that there's a lottery to decide who will get to speak. According to news accounts, those who attend represent hundreds of diseases: common forms of cancer, rare genetic diseases, and even erectile dysfunction.2 All the speakers share a conviction that more research, and access to experimental treatments, will solve their ailments. Their stories are often heartbreaking and compelling, and sometimes influential.
The modern era of patient advocacy began with AIDS activists in the 1980s. Early in the epidemic, when the causes of the disease were still