In October I attended the second annual March Against ED (AKA “MOM March”), followed by Eating Disorder Lobby Day for the Anna Westin Act (H.R.2515/S. 1865) in Washington, DC. The Act is the first eating disorders-specific bill to receive bipartisan support at introduction, which is exciting. There is hope that the bill will be passed this session.
On the day of the March, approximately 300 people assembled on the lawn of the Capitol building to use our collective voices to raise awareness about eating disorders. It was one of the most powerful awareness events I’ve attended.
More a rally than a march, the day was well-orchestrated and moving. Most participants wore purple shirts, while green shirts were worn by those who had lost a loved one to the illness. During the program, we were all asked to give a hug to someone in a green shirt. Activist Kitty Westin – mother of Anna Westin – said, “We don’t want anyone else to wear a green shirt.” Participants carried posters with photos of loved ones that they were “marching for.” The stories and photos of lives lost were a sad and poignant reminder of the brutality of eating disorders. Yet each speaker reminded us that with access to appropriate treatment recovery is possible. The overall tone of the day was hopeful: we celebrated the progress made to date and felt the power of our united efforts.
Speakers included mothers of children both recovered and lost to the illness and recovered, advocates, a pediatrician, and former U.S. Representative Patrick J. Kennedy, the lead sponsor of the Mental Health Parity and Addiction Equity Act of 2008 (“the law that said the brain was part of the body”). Representative Kennedy encouraged participants to continue to fight for insurance coverage. He noted that “Not only do eating disorders have the highest mortality rate of any mental illness, they’re also the most discriminated against.”
Annie Seal, a mother who spearheaded the first insurance-focused eating disorder specific legislation in Missouri, gave a rousing speech. “This is YOUR house!” she said, pointing at the Capitol Building behind her and inspiring us for the day of lobbying ahead.
There were additional both joyful and touching moments. About 25 attendees (including me!) participated in the Shake it for Self-Acceptance flash mob style dance promoting self-acceptance and originality. Professionals, family members, and those in recovery joined together to share in movement and self-acceptance. We also lit candles of hope and set butterflies free.
The following day, 27 delegations comprising 200 advocates lobbied Congress on behalf of the Anna Westin Act. Anna Westin fought a five-year battle with anorexia before committing suicide in February 2000. Her parents and other supporters turned their grief into action, founding the Anna Westin Foundation and the Eating Disorders Coalition for Research, Policy, and Action shortly thereafter.
There are three main components of the Anna Westin Act:
- Training for health professionals, school personnel, and the public in eating disorder identification and early intervention (using NIMH and SAMHSA funds).
- Clarification that the Parity and Addiction Equity Act of 2008 covers residential treatment for all mental illnesses and substance use disorders.
- Requiring the FTC to study whether regulation is needed for digitally altered images in advertising (House bill only).
Lobby Day began early with message training. Following this, we broke into delegations by state. In groups of 5 to 8, advocates attended meetings with our state lawmakers’ staffers, and in some cases the lawmakers themselves. In these meetings, we spoke about why the Anna Westin Act was important to us.
After a lunch break, the delegations assembled to learn more about the importance of the Anna Westin Act from its Senate sponsors, including Senator Amy Klobuchar [MN-D] and Senator Kelly Ayotte [NH-R]. I took pride in standing beside such an engaged, intelligent, and creative group of advocates.
Lobby Day is held twice a year, once in the spring and once in the fall, with the March Against ED held annually prior to fall Lobby Day. If you are connected to eating disorders in some way, I strongly encourage you to go. For further information, follow the Eating Disorder Coalition and the March Against ED.
Special thanks to the organizers of the March and Lobby Day: Becky Henry, Debra Schlesinger, Cherie Bilby Monarch, Johanna Kandel, Kathleen MacDonald, and everyone at the EDC for doing such a great job and being so welcoming to this newcomer.