I will never forget the moment when, at age 19, I stood outside of a member of the U.S. Congress’ office on Capitol Hill, waiting to enter and talk to him one-on-one about the darkest period in my life. Perhaps you are thinking I should have been entering a psychologists’ office instead, but I’d already spent two and a half years in treatment for anorexia. Now, fully recovered and in a new (and frankly, unexpected) role as Miss America 2008, I was ready to speak up for myself and the 30 million women and men struggling for freedom from eating disorders. One in 10 of those who struggle with an eating disorder will never receive care for their illness. Someone dies directly due to complications every 62 minutes. The problem loomed large then and still does today.
When I first lobbied with the Eating Disorders Coalition in 2008 and spoke at a congressional briefing, I was shocked by the lack of understanding regarding the seriousness of eating disorders exhibited by senior members of Congress and some of their top healthcare aides. I was told point blank in a congressman’s office that I “… certainly don’t look like I had an eating disorder.” I saw others pat their bellies and exclaim they “wish they had an eating disorder.” Others told my fellow grassroots lobbyists and me that the problem in their district was childhood obesity — not eating disorders.
This is one of the most dangerous misconceptions surrounding these illnesses: that the two are opposite when if fact they can be two sides of the same coin. Eating disorders, whether anorexia, bulimia, binge eating disorder or some combination of all three derive from deep, underlying emotional and sociological factors, as well as biology, and cannot be diagnosed based on the way an individual looks — “fat” or “skinny.”
After a decade and a half of hard policy work and bi-annual lobby days that brought hundreds of grassroots activists to the Hill, on April 18 the Eating Disorders Coalition will hold another Lobby Day. But this time, it’s different. Why? This spring Lobby Day will bring out droves of advocates impassioned by the recent historic progress in eating disorders legislation made in Congress, yearning to see the momentum continue.
Provisions from the Anna Westin Act of 2015 have made it in to the Senate Mental Health Reform Act of 2016, which is receiving widespread bipartisan support. Senators Amy Klobuchar and Kelly Ayotte have worked tirelessly to move the legislation forward and mobilize other members of Congress to see the value in providing early identification training for health professionals, resources and public service announcements, and clarification of existing mental health parity law to improve health insurance coverage for the full spectrum of care for a life-threatening eating disorder. The Anna Westin Act, named for a 21-year-old Minnesota woman who died after battling anorexia for five years, is sponsored by legislators from diverse regions and ideological backgrounds, including South Carolina Senator Lindsey Graham, California Congresswoman Grace Napolitano, Alaska Senator Lisa Murkwoski, and New York Senator Kirsten Gillibrand.
The energy and momentum behind this legislation is beyond encouraging for many eating disorder advocates, who have for years invested time, energy and precious resources striving to educate their legislators, their stories often falling on deaf ears. With this news, they are celebrating with authentic hope for the first time in a long time. The conversation about mental health, which includes eating disorders, is finally coming into maturity and as it does, so are opportunities for real change that can save lives.
On Monday April 18, hundreds of lobbyists will gather again on Capitol Hill to talk to lawmakers about how their lives have been impacted by an eating disorder. They will tell stories of loved ones lost. They will talk of how insurance denied them care. They will talk about how public school health curriculum and a lack of attention to severely disordered eating and exercise behavior almost destroyed their lives. These aren’t paid lobbyists. Like me, they are just people, with stories, but now with hope.
I first lobbied as an advocate for eating disorders legislation eight years ago, and so much change has already occurred since then. But we need to let our legislators know that the Anna Westin Act and the Senate Mental Health Reform Act need to be passed – lives are on the line. Eating disorders are a public health priority. This wave of change gaining speed cannot continue if our legislators do not hear from us. Will you please reach out to your congressperson? My fellow advocates and I know that telling stories in legislators’ offices works, but so do phone calls, tweets and emails. I urge you to not let this historic moment pass you by: bravery does not always look like a monumental act. Sometimes, it’s just picking up your smartphone.
Ambassador for the National Eating Disorders Association and Miss America 2008.