I need to be perfect.
Sometimes, when she couldn’t sleep, she’d turn on a dim light and fill a page with doodles and words.
I hate me lol.
Maybe someday I’ll be good enough.
In the months since 15-year-old Medin had been diagnosed with anorexia nervosa, though, she’d tried to quiet these kinds of intrusive ideas. She was on a long waitlist for care. After seven months, she was finally accepted into a treatment program.
Then, almost immediately after she enrolled, a denial notice from her insurer arrived.
Medin had lost 12 pounds in two months. But she wasn’t thin enough — she hadn’t starved herself enough, purged enough — to get the treatment recommended by her doctor, her Medicaid plan determined.
“It’s definitely frustrating when you finally realize and understand that you need help, and then you can’t get it,” said Medin, now 17, and whom The Seattle Times is identifying by her middle name to protect her privacy.
That hopeless feeling when insurance refuses to cover mental health care — that’s a storied struggle, one felt by people with a range of psychiatric diagnoses.
Perhaps no other diagnoses, though, fit so well into the gray area between physical and mental health conditions as do eating disorders. These conditions disrupt the traditional divide in the medical system between care for the body and care for the psyche. They’re not one or the other. They’re usually both.
Aided by this ambiguity, some insurers across Washington take advantage of weak government oversight and keep sick patients like Medin from their clinicians’ recommended care. Insurers often emphasize metrics like weight and body mass index while minimizing patients’ serious psychiatric symptoms — a pattern that eating-disorder experts say is outdated and fails to truly show how sick someone is.
Quantifying how often insurers deny treatment is challenging since this data isn’t reported publicly.
State regulators don’t have adequate tools to monitor these companies, they say, and since at least 2016, no Washington insurer has faced serious penalties for eating-disorder coverage practices.
But Medin and others are being told by insurers they must get even sicker — thinner, or suicidal — before they can get the therapies their doctors recommend.
A few years ago, for instance, a preteen who lost 25 pounds in two months was denied continued residential care because she’d started eating again while undergoing treatment, documents submitted to the Washington State Office of the Insurance Commissioner show. And last year, a teen couldn’t get her insurer to cover her eating disorder and suicidality, even after three separate clinicians vouched for her admission to a specialty program.
“It’s hard to think [insurers] aren’t thinking of any possible way to not pay. Because it’s a business,” said Kathleen Fugere, Washington’s director of psychiatric services at The Emily Program, a well-known eating-disorder treatment company with locations in Washington and other states.
How big is the mismatch between what clinicians recommend and what payers decide to cover?
“In my mind, it’s huge,” Fugere said.
In the U.S., about 9% of people develop an eating disorder over their lifetime. Anorexia is the second most lethal behavioral health condition after opioid use disorder. It’s more than twice as deadly as schizophrenia.
Recovery is often long and dotted with relapses. And eating disorders are especially expensive to treat. This problem was made more urgent during the pandemic as referrals and demand for eating-disorder treatment spiked.
When patients can’t get proper treatment early on, their symptoms may worsen — even to the point of requiring hospitalization, experts say.
This worst case scenario is becoming more common in Washington, according to a Seattle Times analysis of state records tracking more than 6,000 hospitalizations of people with eating disorders. Those hospitalizations were 50% higher in 2021 than they were in 2016. And stays are, on average, two days longer than they were back then.
As hospitalization stays got longer and more frequent, charges for patients’ treatment more than doubled. Hospitals now charge an average of about $61,000 per stay.
For children and teens, the numbers are grim. Of the 20 most expensive psychiatric stays among Washington youth in 2021, 40% involved those with an eating disorder. Most hospitalizations for eating disorders used to be for adults — now, about 60% involve kids.
In Medin’s case, instead of acknowledging the seriousness of her anorexia diagnosis, the insurer called her symptoms “eating problems.”
“You are not significantly underweight,” reads the short denial letter from Molina Healthcare of Washington, which oversees Medin’s Medicaid coverage. “You are not having thoughts of wanting to harm yourself.”
What about the fact that she did have urges to cut herself? She had, in fact, harmed herself in the past month.
What about the nausea she felt when she ate? Her distorted perceptions of her body shape?
Furious, her mother wrote back.
“Does Molina stop cancer treatment at the first indicator that cancer is in remission? No … Similarly, for this-life threatening disease, a full course of eating disorder treatment is necessary.”
“Not sick enough”
Low heart rate, dehydration, bone thinning and gastrointestinal problems are some of the many serious physical ills associated with eating disorders.
And then there are the mental health consequences: depression, anxiety and self harm. A fifth of deaths tied to anorexia are a result of suicide.
Clinicians specialize in diagnosing and treating patients, not persuading payers to cover the care they recommend. And it can be difficult for clinicians to convey the seriousness of people’s psychological problems, experts say. So when insurers weigh whether to pay, some minimize patients’ mental states.
Many fall back on more objective physical measures, like weight.
But someone with bulimia, for instance, might binge eat and purge several times a day — behaviors that may never result in low weight but could lead to a heart attack.
“Everything screams to the clinician that they need a higher level of care but the insurance company might say, no, your BMI is normal,” said Jillian Lampert, chief strategy officer at Accanto Health, which owns national eating-disorder companies, including The Emily Program. “That shows either lack of understanding from the insurance company, or more likely, applying guidelines that are too narrow.”
Insurers decide what treatment to approve based on internal criteria that are supposed to follow medical standards — but isn’t always transparent. Premera, for instance, says that the company’s policies are “developed and maintained by health care professionals and are based on review of current scientific literature.”
To get patients the care they need, insurers are expanding the number of clinicians within their covered networks and broadening access to telehealth, said David Allen, a spokesperson for AHIP, a national health insurance trade organization. “We recognize that more needs to be done,” he wrote in an email; he did not respond to specific concerns about why insurers deny care.
Instead of following physicians’ recommendations, OIC complaints and interviews with clinicians across the U.S. show that some insurers require patients to fail out of lower levels of care before getting higher levels their clinician recommends.
One clinician described a patient who was asked to fail out of five or six outpatient programs, including equine therapy and other options that lack a scientific backing. “It was really ridiculous that they were requiring them to fail so many,” said Erin Accurso, who researches systemic barriers to care and is an associate professor of clinical psychiatry and behavioral sciences at the University of California, San Francisco. “We’ve had that happen on numerous occasions.”
Such practices can delay necessary treatment and cause risky behaviors and suicidal thoughts to spiral.
“It’s telling the person who is sick that they’re not sick enough,” Medin’s mother, Lisa, said after she appealed the insurance denial. “My child’s life depends on treatment.”
Indeed, the consequences can be deadly.
A decade ago, Dr. Tess Moore, a physician at Greenlake Primary Care, was treating a patient enrolled in Medicaid who was very ill but, according to her insurance, still didn’t qualify for hospitalization. She regularly purged, which led to low potassium levels and other life-threatening complications. But her labs didn’t drop low enough to admit her to the hospital.
Patients like this have led Moore to become more aggressive about fighting insurance denials, including filing appeals to insurers and complaining to the state.
“Insurance companies tend to have their legal teams write letters that say, ‘We really appreciate this feedback, and we’re going to change,’” she said. But, she added, “There’s no indication that they have a process for this, or what they might do.”
Moore’s patient, she said, eventually died from a gastrointestinal bleed.
“It’s devastating,” Moore said. “And it follows you for a very long time.”
“Denigrated and dismissed”
As Medin’s mother Lisa pushed for treatment, the pair wondered how they’d become ensnared in a battle so counter to recovery.
Medin grew used to feeling misunderstood. She was born in Sri Lanka, grew up with her single mom, and didn’t fit society’s incorrect image of who has anorexia — the thin, white and affluent teenage girl. And the idea that people with anorexia don’t eat? Of course they do, she says. And yet, she faced pushback because she weighed a certain amount, or ate a certain amount.
Medin began restricting food after a tumultuous pandemic year involving bouts of anxiety, depression and switching schools several times. When she was awarded a scholarship to attend a local boarding school, Medin was excited by the idea of a fresh start. But she quickly fell into a group of friends with disordered eating.
Her grades slipped. She began having dizzy spells. And she eventually lost the bodily cues that signaled hunger.
Fugere describes eating disorders as “acute and chronic illnesses” similar to substance use. Like many mental health conditions, they’re tied to a combination of genetic, social and environmental factors.
The modern understanding of disordered eating arrived in the 1950s, when anorexia was included in the first edition of the DSM, the manual doctors use to diagnose mental conditions. Other conditions such as bulimia, binge eating disorder and pica were gradually added.
Despite decades of recognition, however, experts agree that money to develop treatments has always been scarce. Over the past 13 years, the National Institutes of Health has spent an estimated $513 million on eating-disorder research — by comparison, obesity studies won about 26 times more in funding; obesity rates are higher than eating-disorder rates among the general population.
It’s not “taken as seriously as it needs to be by the federal government,” said Bryn Austin, a social epidemiologist and professor at Harvard T.H. Chan School of Public Health. About 235 Washingtonians die every year from an eating disorder, research from Austin and her colleagues estimates, and the annual economic costs of these conditions in the state total $1.5 billion.
Data collection has been challenging, Austin said, especially since 2015, when questions about eating disorders were stripped from a major national surveillance study conducted by the CDC.
“Mental health conditions that are perceived as affecting women and girls are particularly denigrated, and dismissed,” she said.
These research gaps have had vast consequences for treatment: Only a few evidence-based therapies exist.
For people who have lost weight due to their eating disorder, treatment tends to focus on restoring their weight before prioritizing psychological symptoms. But the field doesn’t agree on how to determine weight benchmarks — especially when someone in a larger body has disordered eating.
For instance, an old version of the DSM gave an example of being “underweight” as being 85% of what would be expected — something insurers took “as law when they were not designed to be that way,” said Lampert.
A number on the scale doesn’t tell a patient’s full story, many experts now agree. But, Lampert said, this message is largely lost on or ignored by insurers.
“Sickest of the sick”
When Medicaid first denied Medin’s care, Lisa and providers at The Emily Program went to bat for her.
After a conversation with the insurer, Medin was granted two weeks of treatment.
The treatment program building overlooking Lake Union resembles an upscale community center more than a medical facility. Puzzle pieces are scattered over waiting room tables; pillows and blankets are stacked on couches in snug group therapy rooms. “All foods fit,” reads a colorful collage in the facility’s spacious kitchen.
During the all-day program, Medin ate supervised meals with other patients and gradually started increasing the calories she consumed. During group therapy sessions, she learned coping skills to manage her self-harm and deal with fears of weight gain.
In some ways, Medin was lucky to get a spot at The Emily Program. Many providers here don’t accept Medicaid.
Officials acknowledge significant gaps in what Medicaid patients can access. Two recent bills require the Washington State Health Care Authority to set up pilot programs for “middle” levels of treatment that are more involved than typical outpatient care, but less intense than being an inpatient, said Dr. Charissa Fotinos, Medicaid director at HCA. But, she added, “neither of the current programs is offering these services specific to eating disorders.”
Unable to access adequate care, “in the meantime, the patient gets sicker and they end up in the emergency department,” said Dr. Yolanda Evans, who treats eating-disorder patients at Seattle Children’s.
Molina didn’t respond to specific questions about the company’s coverage policies for Medicaid clients or Medin’s case. But, a spokesperson wrote, “Molina’s team of board-certified psychiatrists review each request in a thorough and comprehensive manner. We are fully committed to ensuring that our members receive high-quality health care that is the most appropriate fit for their needs.”
Getting coverage can be tough even for those with commercial plans, suggest interviews with several of the nation’s leading eating-disorder researchers and a Seattle Times review of five years’ worth of complaints to Washington’s Office of the Insurance Commissioner.
The complaints show some insurers aren’t swayed by dire warnings from physicians.
And sometimes, insurers deny care not on the basis of whether patients are expected to improve — but on whether they’d get sicker with less treatment.
Last year, a 17-year-old’s clinician warned that if inpatient treatment were denied, “there is a high potential for harm.”
But the insurer ultimately rejected the appeal. “The request does not show [the patient’s] symptoms could grow worse if they were treated at a lower level of care,” documents submitted to the state show.
The insurance commissioner ultimately decided the denial didn’t violate insurance law. Premera officials declined to speak about this case, citing privacy concerns. “Coverage decisions are made carefully and follow the same steps for medical, surgical, mental health or substance use disorder needs,” spokesperson Courtney Wallace said.
“Tooth and nail”
Part of the reason eating disorders are covered to the extent that they are is because of significant legal and legislative victories over the past two decades.
A pair of federal laws in 2008 and 2010 helped equalize the ways insurers are supposed to treat people with physical and mental health conditions, known as parity. And in 2016, a new law attempted to close loopholes specific to eating-disorder care.
Some states are passing laws that strengthen government oversight. In the past few years, California and Illinois strengthened the criteria insurers are required to follow when making decisions to cover behavioral health conditions, including eating disorders. Now, for example, insurers can’t limit residential care to days or a week when the standard of care is a month.
New York has also cracked down on insurers that wrongfully exclude eating-disorder patients from care; several years ago, the state investigated several companies for failing to meet parity requirements and entered into settlements that required they course correct.
Washington’s legal protections lag behind.
State regulators say they lack powerful tools to keep insurers in check.
Washington’s insurance commissioner and the Health Care Authority can investigate and fine insurers for legal violations.
But the sheer number of claims that flow through the state’s Medicaid plans make them impractical to monitor systematically, said Fotinos. The same is true at OIC, officials say. As a result, neither agency audits insurers in a way that ensures compliance with parity laws.
Once a Washington patient has exhausted their options — appeals to their insurer failed, or their complaint to the state or an independent medical reviewer was denied — their only recourse is filing a lawsuit.
Lisa Kantor, an attorney in California, took her first eating-disorder case around the same time her niece was diagnosed with anorexia; she realized “no one was helping these people.” Patients can usually get insurance to approve seven to 10 days of care, she said, but anything beyond that requires people to fight “tooth and nail.”
“It’s totally treatable. And it takes a lot of effort, takes a lot of work, it takes a lot of money. But there is no reason we should be losing people to this disease.”
After Medin’s initial two weeks of treatment, her insurers argued she should step down to a lower level of care.
This tiring cycle went on for weeks.
Each time, Lisa and Medin’s doctors won a few extra days until Medin finally made a difficult decision: stop fighting.
“I would rather step down on my own terms than have insurance tell me when to step down,” Medin said.
She’s been able to continue therapy on an outpatient basis — something her insurance covers. And she says she’s in a “much better place” than she was a year ago.
On an undated page in her sketchbook, she drew a figure sitting on a blanket of stars, a bouquet of flowers where her head should be.
“If I was the only person left on Earth I’d just be with myself in silence, marvel at how much I enjoy my own company,” she wrote. “Maybe I’d sit in the rain I have continuously let drown me and let it wash away the hurt … maybe I’d wait [until] new growth starts to spring …”
But even now, Medin says she still struggles with eating-disorder thoughts.
And at home, she still wears long fake fingernails to keep herself from purging.
Reporter: Hannah Furfaro
Editor: Diana Samuels
Illustrations and graphics: Jennifer Luxton, Mark Nowlin
Animation and videography: Jennifer Luxton, Lauren Frohne
Photography: Daniel Kim, Greg Gilbert
Photo editor: Bettina Hansen
Design and development: Frank Mina
Copy editor: Laura Gordon
Audience engagement: Michelle Baruchman, Qina Liu
Hannah Furfaro reported this story while participating in the Rosalynn Carter Fellowship for Mental Health Journalism.