30 million people will experience eating disorders — the CDC needs to help

The Centers for Disease Control and Prevention (CDC) slogan is, “24/7: Saving Lives, Protecting People.” With nearly 1 in 10 Americans experiencing an eating disorder in their lifetime, we’d assume the CDC would diligently monitor their signs and symptoms via a nationally administered high school survey, called the Youth Risk Behavior Surveillance System (YRBSS).

In our decades of treating patients with severe eating disorders, we’ve seen these illnesses often emerge in youth, and recovery is more likely with early intervention.

{mosads}Yet, beginning in 2015, questions on eating disorders were omitted from the YRBSS. After prioritizing these risk behaviors for over two decades (1991-2014), the CDC simply stopped asking about young people’s experiences with the deadliest of all mental illnesses.

Why? And what can be done about it now?

A coalition of eating disorder organizations and researchers led by Harvard University’s Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED), which includes the Academy for Eating Disorders and The Eating Disorders Coalition for Research, Policy & Action (EDC), is seeking answers.

They united 65 members of Congress to send bipartisan letters imploring the CDC reinstate eating disorder monitoring as a part of national disease surveillance.

The response from the former CDC director, Dr. Brenda Fitzgerald was evasive, inadequate and disappointing.

Fitzgerald deferred to states, territories and school districts (member sites) administering the YRBSS. She writes, “If member sites identify eating disorders as a priority in the future, CDC could provide education on this issue and technical assistance on data collection.”

This is putting the cart before the horse. The CDC must first prioritize education and technical assistance for member sites: How else will educators know eating disorders have the highest mortality rate of any psychiatric illness?

How will they understand that only one-third of those afflicted will ever seek or receive medical, psychiatric and/or therapeutic care? The CDC is the sole health authority responsible for starting this discussion.  

But Fitzgerald offered a consolation prize, saying the omitted questions are still available via optional supplements and that member sites, on occasion, do use them.

Having such a patchwork of data that are randomly collected only by some will not lead to a scientifically valid data bank. Only when all parties are expected to participate can we see a complete picture and draw essential regional comparisons. And only when the data collection methods remain constant from year to year can we conduct accurate and meaningful trends analyses.

In her conclusion, Fitzgerald made a misinformed claim that eating disorders are too rare to warrant inclusion in another national questionnaire, the National Health and Nutrition Examination Survey (NHANES).

The reality is that the American Academy of Pediatrics (AAP) has identified eating disorders as the third most common chronic illness in adolescents. Based on National Institute of Mental Health (NIMH) estimations, in a typical public high school of 800 students, approximately 20-22 students will be impacted and even more will experience subclinical eating disorders. Those same students will also be more likely to experience medical co-morbidities such as depression, anxiety, substance abuse and suicidality.

According to the scientific research, nearly 30 million Americans will experience a clinically significant eating disorder in their lifetime. Annual health care costs for these individuals will be nearly $2000 greater compared to individuals without eating disorders, and it’s worth mentioning that elevated rates of eating disorders are found among our country’s military service members.

The contents of these correspondences warrant further conversation. The CDC will soon appoint a new director and we hope for new direction from incoming leadership. In the interim, STRIPED and The Center for Eating Disorders at Sheppard Pratt are again calling on members of Congress and the CDC to prioritize this issue.

From the House, we call on Rep. Greg Walden (R-Ore.), Chairman of the Energy and Commerce Committee, whose jurisdiction extends to public health and research, and Rep. Michael Burgess (R-Texas), chair of the subcommittee on health.

In the Senate, we call on members of the Health, Education, Labor & Pensions (HELP) committee, including Chairman Lamar Alexander (R-Tenn.), ranking member, Patty Murray (D-Wash.), along with members Michael Enzi (R-Wyo.) and Bernie Sanders (I-Vt.).

We need consistent and mandatory health data to detect, track and assess the growing risks that eating disorders present so we can move to a model that saves time, money and lives. Until then, we remain painfully aware that every 62 minutes, someone dies as a direct result of an eating disorder.

Steven F. Crawford, M.D., and Harry A. Brandt, M.D. are co-directors of The Center for Eating Disorders at Sheppard Pratt.