As a college student in Michigan, Anna Zaleski became so sick with anorexia that her local providers could no longer treat her; she needed round-the-clock care. She flew to Colorado to check into a residential eating disorder treatment program and begin a long process of recovery.
Despite advocacy from the facility and her parents’ tireless efforts, her insurance only approved three out of nine weeks of her stay. Her parents—a high school teacher and a CPA—paid the rest, nearly $40,000 out-of-pocket, along with tens of thousands of dollars for years of subsequent outpatient therapy.
Losing the insurance battle didn’t just take a dent out of her parents’ finances, it was also disheartening and demotivating for Zaleski.
“I felt like for some reason, I’m not worthy of this treatment,” Zaleski said. “If my insurance company doesn’t even want to fight for me, then why do I want to fight for myself?”
Now nine years later, she knows how lucky she was that her parents could pay and valued her recovery above all else. It breaks her heart that not everyone has the same opportunity.
“If I hadn’t gone to treatment, I question if I would really be alive today,” Zaleski said.
The Cost of Eating Disorders
Nearly 29 million Americans have an eating disorder in their lifetime—5.5 million in any given year—at an annual cost to the healthcare system of $4.6 billion, according to a Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED) report from the National Academy for Eating Disorders. Societal costs of lost productivity, government support, and unpaid caregiving are much higher.
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Eating disorder hospitalizations average 14 days and $19,400—the longest and costliest mental and/or substance use disorder admissions.
Subacute residential treatment like Zaleski’s typically lasts longer. The STRIPED report suggests the average residential facility stay is 31 days and costs more than $1,200 per day.
These regulations have improved insurance coverage, according to Cyndi Eddington, vice president of Revenue Cycle Management at Eating Recovery Center (ERC). When ERC was founded in 2008, Eddington said nearly every patient faced health insurance exclusions for residential treatment or for eating disorders as a covered diagnosis. “Today, we almost never see it,” she said
Despite improvements, insurance barriers remain.
Insurers won’t authorize residential treatment until the patient arrives at the facility for in-person evaluation. But there are fewer than 1,500 residential beds across the U.S. for adults and many patients must travel out of state to get care.
If the facility determines that the patient needs 24-hour care, the insurer may still deny the admission. That leaves patients and families in a bad spot, according to attorney Lisa Kantor, a long-time advocate for insurance coverage of eating disorder treatment.
“It’s discouraging,” said Kantor. “For a lot of these women, it takes so much energy for the whole family to get them to the point where they’re willing to accept help.”
Some families pay out-of-pocket while they appeal the insurance denial, but many cannot afford to do that.
Eddington said ERC works hard to avoid surprise insurance denials, working with families to develop contingency plans—such as partial hospitalization—if insurance denies the admission. ERC also goes to the mat with insurance for patients and offers financial assistance for underinsured patients in need.
Even with insurance coverage, out-of-pocket costs can be prohibitive.
“For some people who need treatment, their deductible and coinsurance are unrealistic expenses,” said Eddington. “$5,000 may as well be $100,000 if you don’t have the means to cover it and you don’t have a safety net.”
When insurers deny coverage for 24-hour residential services or retract it through an ongoing utilization review process, the message to patients is clear: you’re not sick enough for treatment.
It’s a dangerous message for eating disorder patients, according to Zaleski.
She received that message on a second residential stay following a relapse when the insurer cut off her coverage a couple of days into her stay. The insurer interpreted Zaleski’s compliance with the treatment plan as a sign that she wasn’t sick enough to need 24-hour residential care. She took it as a challenge to prove how sick she really was.
“We would never question paying for someone’s cancer treatment, even if they have Stage I or Stage II [cancer],” said Zaleski. No one tells cancer patients to come back when their cancer has become Stage IV. “With mental health, we want to see someone in such a dark place before we’re willing to pay for that.”
At that point, Zaleski noted, patients are sicker, more difficult to treat, and require more expensive treatment—if they can be treated at all. More than 10,000 people with eating disorders die in the U.S. each year.
Mental Health Parity and Beyond
Shame and fear of future discrimination hold some families back from seeking treatment, as does misinformation, according to Eddington.
“There are still families who believe that they don’t have mental health coverage,” Eddington said.
This National Eating Disorders Awareness Week, she wants patients and their families to know that help and resources are available. Eddington has seen tremendous progress—and more work to do.
The next frontier in ensuring access to mental health treatment goes beyond parity with medical coverage. A recent California law requires insurers to cover all medically necessary mental health services, according to American Psychiatric Association guidelines rather than insurers’ internal policies. Broader adoption of such a law would put mental health experts and clinicians in charge of decisions about what kind of care patients need.
“There really is a problem when we have insurance companies that are dictating the treatment, as opposed to the actual professionals who are caring for the clients that should be advising and guiding the treatment,” Zaleski said.
The pain of watching her parents fight for insurance coverage while fearing they would have to bury her still guts Zaleski. She would never wish an eating disorder on her worst enemy, but thinks direct experience could make insurance companies more generous.
“If everybody had to experience what families like mine had to experience, then insurance coverage would be different.”