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The Eating Disorders Coalition for Research, Policy & Action (“EDC”) announced last week that 65 bipartisan Members of both the U.S. Senate and House of Representatives sent letters to the Center for Disease Control (“CDC”) urging that questions about eating disorders be re-included within the CDC national surveillance systems such as the CDC’s Youth Risk Behavioral Surveillance System. In 2015, the CDC and state stakeholders voted to remove the mandatory eating disorders surveillance questions.

According to the EDC, “No CDC surveillance systems with youth or adults include eating disorders surveillance. Consequentially, eating disorder researchers and public health experts across the nation were left with only outdated and piecemeal data to help shape public health programs, identify emerging warning signs and symptoms, and discover highly affected communities and groups such as boys and men, Native Americans, and veterans.”

At EDC’s Advocacy Day on October 5, 2017, advocates from across the country gathered on Capitol Hill and spoke to Members of Congress and their staff about the need for the CDC to re-include questions about eating disorders in their surveillance systems. It worked!

The Senate letter was led by Senators Tammy Baldwin [D-WI], Elizabeth Warren [D-MA], Shelley Moore Capito [R-WV], and Amy Klobuchar [D-MN], and supported by thirteen of their Senate colleagues. The House of Representatives letter was led by Rep. Markwayne Mullin [R-OK] and Rep. Ted Deutch [D-FL] and received support from an additional 46 bipartisan Representatives.. Both letters were addressed to Dr. Brenda Fitzgerald, the Director of the Centers for Disease Control and Prevention.

The letters advised Dr. Fitzgerald that the data regarding the number of Americans affected by eating disorders is outdated because it was gathered over ten years ago. The letter stated, “Unfortunately, the national data needed to fully understand the prevalence and trends of this disease and to improve prevention and treatment efforts do not currently exist.

Accordingly, we urge you to consider including questions related to eating disorders in Centers for Disease Control and Prevention (CDC) national surveillance surveys to help improve the lives of people affected by these deadly conditions. Improving data collection on eating disorders is particularly important given the high mortality rates…Increased hospitalizations for eating disorders and increased prevalence among men indicate that this public health issue is growing in significance and affecting new populations…”

The letters also addressed the need to identify regions and communities that may be disproportionately affected by eating disorders, and determine whether specific groups (i.e.: veterans or military families) may need specialized prevention efforts and treatments. The EDC hopes to have a response from the CDC by mid to late November 2017. We will keep you posted!

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