Second to deaths spurred by the opioid crisis, eating disorders have the highest mortality rate of any psychiatric diagnosis. Yet insurance companies resist covering life-saving treatment.
I first binged when I was just 5 years old. I snuck a box of multi-colored ice cream cones — red, green, blue and yellow — out of the pantry and ate as many as I could in the secrecy of my bedroom walls. For over 35 years I had binge eating disorder and atypical anorexia, because insurance didn’t cover necessary treatment, my eating disorders spiraled into heart failure.
{mosads}Recent landmark court decisions and amendments to state legislation are setting precedent for parity coverage of eating disorders treatment. But we need to remain diligent in stoking insurers to provide equal coverage for eating disorders treatment across the country.
For New Yorkers struggling with eating disorders recovery, the name Timothy holds significant weight. Timothy’s Law, also known as the Mental Health Parity Law, went into effect in 2007 and requires that health plans sold in New York provide comparable coverage for mental health ailments as they do for physical ailments.
Last month, we added a new name to our repertoire: Judge Joseph C. Spero. He is now known far beyond the 15 counties within the confines of the Northern District of California. Why? His recent ruling in Wit v. United Behavioral Health found the largest behavioral health company in the United States consistently rejected insurance claims of people seeking mental health treatment, including care for eating disorders, by using flawed review criteria to cut costs.
This practice is emblematic of gross inequities in treating patients with eating disorders. Providers across the board— Anthem, BlueCross BlueShield, Aetna, Kaiser, Humana— have all been taken to court by individuals and families alleging improper denial of mental health benefits for treatment. Insurance companies have waged war on the most vulnerable in our health-care system since their creation.
Last week, on the heels of this landmark decision, New Yorkers in the eating disorders community rejoiced. A bill passed the New York State Senate with a 53-10 vote that amends Timothy’s Law to expand health-care coverage of eating disorders. Until now, “biologically based mental illnesses” in the Mental Parity Law applied only and specifically to anorexia nervosa and bulimia. Under this legislation, the definition will include all eating disorders in the most recent version of the Diagnostic and Statistical Manual of Mental Disorders (DSM).
While both anorexia nervosa and bulimia are life-threatening mental illnesses, they are only two of many disorders recognized by the DSM. The term under new legislation will now be taken to mean pica, rumination disorder, avoidant or restrictive food intake disorder, anorexia nervosa, bulimia nervosa, binge eating disorder, other specified feeding or eating disorder, and any other eating disorder contained in the DSM.
This amendment is critical to parity coverage for the nearly two million New Yorkers with eating disorders, because the majority do not have anorexia and bulimia. In fact, the most common eating disorder, binge eating disorder (BED), occurs three times more than anorexia and bulimia combined. Yet treatment has been severely limited by insurance providers in New York State.
During my struggle with binge eating disorder, a lack of in-network specialists and restrictive insurer guidelines caused my eating disorders to go untreated for years because I could not afford the out-of-pocket payments for specialized therapists. That delay in treatment led my heart to fail. After years of binging and severe restriction, my heart was weakened to a point that it could no longer pump effectively.
You may be shocked by insurance companies and their untenable practices, but as head of strategy and policy for the National Eating Disorders Association, I have met thousands of people fighting an uphill battle with insurance companies when they are most vulnerable. Some of these individuals died from the complications of their eating disorders and many more remain unable to function on a daily basis.
There is a caveat to the Wit case. It only pertains to those covered by employer-sponsored insurance plans. Eating disorders do not discriminate. The employed are just a portion of the millions of Americans with eating disorders. How often will we forsake those that fall out of the scope of employed citizens?
A 2014 study found that rates of disordered eating have increased across all demographic sectors, but at a faster rate in lower socioeconomic and older participants and teenage girls from low-income families are 153 percent more likely to have bulimia than girls from wealthy families.
To be sure, eating disorders were added to the Federal Mental Health Parity Law in 2017. But as evidenced by Timothy’s Law in New York, there is still an immense amount of work to be done at the state level to ensure individuals are not denied coverage. Each state needs laws with unassailable language that can’t be misinterpreted or manipulated.
In the United States, 20 million women and 10 million men will suffer from an eating disorder at some point in their lives. Accessing affordable treatment is of paramount importance in any journey to recovery, regardless of the type of eating disorder or socioeconomic status of the individual with the disease.
We must continue pressing insurers through legal action and policy until all Americans — the unemployed, historically marginalized, people of color, individuals in higher weight bodies, queer folk and everyone in between — have true coverage of eating disorder treatment.
Chevese Turner is the chief policy and strategy officer at the National Eating Disorders Association.