Eating disorder activists from across the United States are meeting in Washington to call attention to what they describe as an inadequate response by the federal government.
Approximately 100 people have registered with the Eating Disorders Coalition for a day of meetings at the Capitol. The coalition organized the Sept. 14 advocacy day, a press conference, and the first display of a memorial quilt with the names of people who have died from eating disorders.
"This is the largest gathering of eating disorder activists ever at the Capitol," says Jeanine Cogan, policy director of the coalition. "Clearly, people have had enough, and they're making their voices heard."
The coalition represents member organizations nationwide, including researchers, therapists, prevention experts and families touched by eating disorders. The coalition conducts awareness-raising programs such as the quilt project and campus speaking tours, but their focus is public and private policymakers and the media in Washington, D.C.
"Eating disorders challenge millions of people in this country," Cogan says, "but the problem has been in the closet. The whole environment around eating disorders is one of secrecy and denial, and that has made it especially difficult to bring attention to the problem."
Parents who have lost children to eating disorders will be among those speaking at the lobby day and press conference. Others will talk about their recoveries from years of battling anorexia, bulimia, binge eating, and other problems.
Among the concerns that advocates will address is the relatively low level of federal funding for eating disorder research. The National Institute for Mental Health estimates that the federal share for eating disorder research is $21 million a year. Schizophrenia research receives approximately $350 million annually.
"We just need people to know about the devastating effects of eating disorders," Cogan says. "We need insurance companies to adequately cover effective treatment, and we need people to get the care that they need and deserve before it's too late."