Part of this mess stems from a lack of research and resources, specifically regarding what constitutes effective eating disorder treatment, according to Pavani Rangachari, Ph.D., CPH, a professor of healthcare administration and public health at the University of New Haven. As a result, “insurance companies often refrain from providing full comprehensive coverage,” she says.
Insurance companies tend to treat eating disorders as acute illnesses that can be remedied in weeks rather than chronic illnesses that require years of treatment, says Eyre. Plus, there’s “a fundamental distrust” between eating disorder treatment centers and insurance companies, making the latter wary of approving coverage for long-term treatment, according to Eyre.
Ultimately, coverage is authorized based on “medical necessity,” she explains. “You need to prove that you are ‘sick enough’ in order to get that kind of treatment paid for by your insurance.” Eating disorders are the only mental health diagnoses that are treated based on medical symptoms alone, Eyre adds.
While there is legislation that requires health insurance issuers to provide the same level of benefits for mental health disorders and medical issues, it doesn’t seem to be well enforced, explains Grayson. “Medical issues are a lot easier to get covered,” she says.
In order to determine if someone meets the “medical necessity criteria” for a specific level of care for eating disorder treatment, insurance companies take specific numbers into consideration, Grayson adds. They look at factors like weight, heart rate, and body mass index (BMI).
The problem is that these figures don’t always tell the whole story. Being underweight and having a low heart rate may be indicative of the stereotypical image of someone with an eating disorder (read: a young, white, thin, cis-gendered girl with anorexia), but this excludes many people. Eating disorders affect individuals of all genders, races, ages, body types, sexualities, and socioeconomic backgrounds, and they don’t all present the same way.
What’s more, BMI measurements have largely been considered outdated and racially problematic. Not only does using BMI as a measure of health keep some people from getting insurance coverage for eating disorder treatment, but it often delays an accurate diagnosis in the first place. Atypical anorexia and binge eating disorder are two of many conditions that a BMI figure doesn’t necessarily account for since they don’t necessarily cause extreme weight loss.
In cases where patients have a higher BMI, insurance providers sometimes wonder why healthcare providers aren’t prescribing weight loss, according to Grayson. “There’s a lot of lack of education from insurance on what eating disorders look like,” she says.
While the conditions don’t discriminate, the practices used to measure if someone deserves insurance coverage for treatment seem to, whether intentionally or not. With these barriers (and many more) in place, it often comes down to patients and their family members to fight for the care they need.
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“It’s exhausting,” says Julie Potts, whose son Simon is autistic and was diagnosed with avoidant restrictive food intake disorder (ARFID) in 2015 at age 10. The condition causes Simon to eat extremely limited food groups, resulting in poor nutrition and related health problems such as gastrointestinal issues. Julie and her ex-partner have run the gamut of trying to get insurance to cover the cost of care for their son’s eating disorder.
