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

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

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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 FitzgeraldBrenda FitzgeraldOvernight Health Care: Drug company under scrutiny for Michael Cohen payments | New Ebola outbreak | FDA addresses EpiPen shortage CDC director to take pay cut of more than 5k CDC director asks for salary reduction after questions raised MORE 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 WaldenGregory (Greg) Paul WaldenOn The Money: Trump says he won't declare emergency 'so fast' | Shutdown poised to become longest in history | Congress approves back pay for workers | More federal unions sue over shutdown Overnight Energy: House votes to reopen Interior, EPA | Dems question EPA over Wheeler confirmation prep | Virginia Dem backs Green New Deal House votes to reopen Interior, EPA as shutdown fight wages on MORE (R-Ore.), Chairman of the Energy and Commerce Committee, whose jurisdiction extends to public health and research, and Rep. Michael BurgessMichael Clifton BurgessOvernight Health Care: House set to vote on bill targeting drug companies for overcharging Medicaid | Dems press Trump officials on pre-existing conditions | Tobacco giant invests .8B in Canadian marijuana grower GOP struggles to find right Republican for Rules Cards Against Humanity offering midterm expansion pack in effort to back Dems in key races MORE (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 AlexanderAndrew (Lamar) Lamar AlexanderSenators restart shutdown talks — and quickly hit roadblocks GOP senators propose bill to pay 'excepted' workers during shutdown Budowsky: Warning to Senate Republicans MORE (R-Tenn.), ranking member, Patty MurrayPatricia (Patty) Lynn MurrayBold, bipartisan action on child care will win plenty of friends GOP seeks health care reboot after 2018 losses Democrats demand answers on Trump short-term insurance plans MORE (D-Wash.), along with members Michael Enzi (R-Wyo.) and Bernie SandersBernard (Bernie) SandersOn The Money: Shutdown hits Day 24 | Trump touts need for wall in speech to farmers | Poll numbers sag | House Dems push stopgap bills | How the shutdown could harm the economy | TSA absences raise stakes for deal Overnight Health Care: House Dems launch major drug pricing investigation | Judge blocks Trump contraception rule rollback | Booker tries to shake doubts about pharmaceutical ties ahead of 2020 | FDA to resume high-risk food inspections Gillibrand to kickstart 2020 White House bid before weekend Iowa trip MORE (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.