The barriers to eating disorder treatment are depressingly familiar to Alexa Grayson and her team at Project HEAL. The mission of the Parkville, Maryland, nonprofit is to break down the barriers that keep people with eating disorders from getting treatment — and the insurance coverage that will pay for it. The program helps people negotiate with programs and insurers and it sometimes functions as a last resort, a place where people who canʻt get help in other ways can apply for short-term treatment grants.
Project HEALʻs navigators often guide people through the process of applying for a so-called single-case agreement to obtain insurance coverage for an out-of-network provider. Getting one is far from easy, however. To qualify, people must prove that the service they need is not available in-network due to lack of qualified providers or treatment programs.
“This is not something insurance loves to willingly share,” said Grayson, who manages the insurance navigation program. “If you call member services, a lot of them probably don’t even know what a single-case agreement is, especially one that’s eating disorder-specific. There are a lot of specific steps you have to take.”
Demand is rising rapidly. Two years ago, Grayson said, Project HEAL was receiving fewer than 20 applications for assistance a month. Today, the number often exceeds 80.
Delays in getting treatment approved can be deadly, especially for those with severe anorexia and bulimia. Often, Grayson said, it has to get to the point that someoneʻs symptoms are severe enough to cause serious physical damage requiring hospitalization before coverage kicks in. For those in an earlier stage of the disorder, delaying treatment or receiving a lower level of care than needed can prolong the disease and allow it to progress.
“Thatʻs part of why our system is so overwhelmingly broken,” Grayson said.
In dozens of interviews, families, attorneys and eating disorder advocates detailed the extensive barriers they faced that blocked or delayed the start of treatment. Even when they get the OK from an insurance company to begin therapy, patients often find few or no in-network providers with expertise in treating eating disorders. And then, if they’re lucky enough to find an appropriate clinician, that provider is likely to be fully booked with a long waiting list.
“What insurance companies fail to appreciate is that it takes a long time for the brain to heal; it has to develop new pathways, the patient has to overcome their fear of eating.”—TRISHA WESTMORELAND, MEDICAL DIRECTOR, ACUTE CLINIC IN DENVER
Even when doctors recommend higher levels of care – such as intensive outpatient treatment, partial or full hospitalization or residential treatment – families often find that the nearest facility is in another state, hundreds or thousands of miles away, that insurers will only approve lower, less expensive levels of care and that they must be prepared to pay hefty out-of-pocket costs. But some nonprofit health groups are trying to bridge the gap.
“What the insurance companies fail to appreciate is that it takes a long time for the brain to heal; it has to develop new pathways, the patient has to overcome their fear of eating,” said Trisha Westmoreland, medical director for the ACUTE clinic in Denver. “Patients and families are put in a very difficult position when they arenʻt given enough time. It becomes this revolving door and that wouldnʻt have happened if theyʻd had an adequate course of treatment the first time.”
Westmoreland notes that ACUTE has less difficulty getting insurance coverage when patients are medically unstable. “Once people step into the behavioral health realm, itʻs very difficult to document that they need more time in a supervised setting,” she said. “People donʻt understand the severity. They donʻt realize that anorexic patients can die with stone cold normal lab results. Or that no matter what weight a patient is at, if they purge frequently enough they can drop their potassium really quickly, and they can have a seizure or cardiac arrhythmia and they can die.”
“There are people we know and have cared for, for years. They may have come back a few times – and then we will hear from former patients or other providers that they died,” she said. “It’s so incredibly sad because we obviously work really hard with these patients and there is always the potential to help people get better. But you don’t save everybody.”
The experience of Danielle Ellis is a perfect illustration of this frustrating cycle. A high school and college athlete who played three different sports, Ellis began severely limiting her food intake and over-exercising in high school, following the example of her mother, who also had an eating disorder. But it wasn’t until she was in her first years of college that the disease took control and her weight declined precipitously. She was diagnosed with anorexia at 21, and has been in and out of outpatient and residential treatment ever since, including three different hospital stays at ACUTE in Denver.
Ellis, now 32 and a school therapist in Georgia, says she was often caught between being too sick for outpatient residential treatment and not sick enough to be in the hospital. When she was hospitalized, Ellis recounts, she was often discharged without adequate follow-up support, and ended up relapsing. At those places, “it feels like they donʻt care about you,” she says. “Like they’ve given up on you.”
Ghost networks and a broken system
One way insurance companies limit care is by requiring patients to get treatment only from a list of approved providers – the “network.” When there are few providers on the list, patients are forced to go “out-of-network” – and pay much or all of the provider’s fee. Small networks limit access to all types of mental health care: According to a recent report from the Bowman Family Foundation, 39% of patients in employer-sponsored health plans used at least one out-of-network mental health or substance use provider for outpatient care, compared to 15% for physical health providers..
Studies have also documented the growing use of what researchers call “ghost networks” – listings of providers who do not actually practice, take new patients or even exist. Some reports have found practitioners listed in insurance networks who are retired or dead.
When insurers have small networks, patients – who often are in dire condition – or their families are forced to spend time trying to find a covered practitioner. The Bowman report found that 40% of insured patients had to contact four or more providers to find an in-network provider for outpatient mental health or substance use care compared with only 14% of those seeking a physical health care provider.
Health plans and insurers mentioned in this series, including Cigna, Anthem, and Blue Cross/ Blue Shield, did not respond to requests for comment from MindSite News. UnitedHealthcare responded but declined to comment.
In a written statement, Chris Bond, a spokesperson for America’s Health Insurance Plans (AHIP), an insurance trade association, noted that health plans’ coverage decisions “follow the latest medical guidelines on treatments and medical care that are proven to be safe and effective. Data on denials rarely take into account the overwhelming number of claims that are submitted from doctors that have extensive gaps in the accuracy and completeness of information provided, meaning health plans are regularly having to follow up to confirm correct billing and diagnostic codes” as well as proper treatment.
In addition, Bond wrote that states, employers, and federal regulators “ultimately have an outsized and often final say on what benefits are included for consumers. So if a service is not included as part of coverage – as a result of an employer’s coverage policy or a state requirement – then it’s important to understand that distinction.” Finally, he added, “every aspect of insurance is regulated or reviewed by state insurance commissioners and federal regulators.”
The problem is that patients can get lost or swallowed up in the process, advocates say.
“If people spend all this time and can’t find a qualified therapist or can’t find treatment they can afford, sometimes they just give up. And that means someone goes untreated,” said therapist Lauren Muhlheim. Her Los Angeles-based practice specializes in eating disorders and accepts insurance – including Medicaid and Medicare – as an in-network provider.
Since insurance networks offer therapists reimbursement rates that are often just 50% of the going private rates, providers have little incentive to join, Muhlheim said. The RTI report backs this up, showing that the average reimbursement rate for office visits to behavioral health clinicians was nearly 22% lower than to medical providers.
And if accepting low fees wasn’t bad enough, Mulheim said, she also must pay office workers to handle the huge amounts of paperwork required by insurers.
“I have nine therapists, and I have three admin personnel just to handle the paperwork,” Muhlheim said. “You’ve got to be a certain size for it to be practical and thatʻs just not possible for most sole providers or small groups.”
Provider networks can also be deceiving: A search for “eating disorders” in a network directory may turn up available therapists, but those listed may have little or no experience treating eating disorders. Mulheim says that’s because therapists applying to be included on an insurer’s “panel” of practitioners are given a list of as many as 40 different areas of speciality.
“A lot of the insurance companies don’t really vet, they just tell you to check all the things you treat,” Muhlheim said. “People want to be chosen for the panel so they think they should just check as many things as they can, but they donʻt actually have any experience.”
The impact of private equity
One force affecting the availability of inpatient care has been the growing ownership of eating disorder treatment facilities by private equity firms. Observers say these firms typically operate by pouring resources into companies and expanding them to make them attractive to other investors while also cutting costs, before ultimately cashing out in a sale.
“Their model is to expand and open up multiple sites, and then look for an exit,” said Ethan LeFever, director of ViaMar Health in Florida, an eating disorders treatment facility that is privately owned by his family.
But with profit as investors’ primary driver, treatment centers owned by private equity firms are under pressure to cut costs. “They’re selling at these huge multiples, which means they have to take all this profit out of it,” Muhlheim said. “This is most easily accomplished by increasing patient-to-staff ratios and in some cases replacing long-time, experienced staff with newer hires.” This often means losing “extras” like art therapy, support groups, and more.
“When facilities were smaller and privately run and those folks were involved intimately with their own center and their vision and purpose, the care translated to being better and more individualized,” LeFever said. “You had a lot more attention to the human on the other end because you’ve got clinicians with their boots on the ground who were involved in the care that their name was on.”
“In Kentucky, if you have Medicaid, you are just out of luck: There are no residential centers or inpatient centers in the country that will take Kentucky Medicaid.”—CHERI LEVINSON, DIRECTOR OF THE EAT LAB AT THE UNIVERSITY OF LOUISVILLE
Observers say there’s another problem, too: Very few private equity-owned residential facilities that treat eating disorders accept public insurance. That means that patients who are covered by Medicaid are essentially excluded from these programs, making it extremely difficult for low-income patients and patients of color to find residential programs that serve them.
“In Kentucky, if you have Medicaid, you are just out of luck: There are no residential centers or inpatient centers in the country that will take Kentucky Medicaid,” said Cheri Levinson, director of the EAT Lab at the University of Louisville, whose clinic provides intensive outpatient and partial hospital programming but not inpatient. “When I have adolescents who need residential (care) and they’re on Kentucky Medicaid, I have literally nowhere that I can send them in the entire United States.”
With fewer services and a smaller, less experienced staff, private equity firms “have reaped financial gain at the expense of their food-challenged, largely female patients,” wrote Laura Katz Olson, distinguished professor of political science at Lehigh University in her 2022 book, Ethically Challenged: Private Equity Storms US Health Care.
Those who need a higher level of care frequently can’t get into for-profit treatment programs that won’t accept Medicare and Medicaid and must rely instead on university-based programs that take insurance, said Jennifer Wildes, a professor of psychiatry and neuroscience and director of the Eating Disorders Program at University of Chicago. But many such programs, including hers, are outpatient only, providing family-based treatment and cognitive behavioral therapy to children and adults, with medical consultation provided by the medical centerʻs doctors.
“The real challenges tend to come for our folks with Medicare and Medicaid if we need to step them up to a higher level of care,” Wildes said. “We often find ourselves sort of stuck with these patients who really aren’t appropriate for our level of care, but don’t have any other options. Even our well-insured clients run up against very high deductibles and will have to pay a lot out of pocket before they hit that amount.”
“The treating doctors are saying, ‘She really needs to stay longer.’ And the insurance company is saying, ‘Well, our reviewer said she’s had enough.’”—LOS ANGELES ATTORNEY LISA KANTOR
Private equity-owned behavioral health companies have a history of acquiring, then closing smaller eating disorder treatment centers. When Shoreline Center for Eating Disorder Treatment in Laguna Hills, California was acquired by Odyssey Behavioral Healthcare in 2021, Shoreline’s CEO Rose Levi said in a press release that “Odyssey and Shoreline make an ideal match and we’re thrilled to be joining their network of renowned eating disorder facilities.”
Two years later, Odyssey closed the Shoreline program. In December 2024, Odyssey quietly sold to JLL Partners, another PE-backed behavioral health company.
An easy target for insurance companies
Attorneys who handle eating disorders cases have a front row seat to the desperation of families seeking treatment. “Eating disorders have become an easy target for insurance companies because they don't want to pay for a lot of care, and eating disorders are complicated and difficult to treat,” said Hufford, who litigated a landmark parity case, Wit vs. United Behavioral Health. “They would like to try to treat issues quickly and then reduce the level of care.”
Some eating disorder patients manage to get their insurers to pay for a week or two of tre
atments before conflict sets in between doctors and insurance reviewers, said Los Angeles attorney Lisa Kantor, whose law firm represents people denied health benefits for treatment of eating disorders and other illnesses. "The treating doctors are saying, ‘She really needs to stay longer.’ And the insurance company is saying, ‘Well, our reviewer said she's had enough.’” Yet terminating treatment prematurely can cause serious harm, Kantor said.
“If someone has cancer, you don't treat them to 85% of recovery; you treat them until you think the cancer is gone," she said. "But what we're doing with eating disorders is we're saying, ʻWell, we've gotten you to the point where you're not actively trying to kill yourself, you're not actively trying to hurt yourself, your weight is better, basically go home and do the rest on your own.ʻ"
"Itʻs insane," Kantor added. "It doesn't make any sense. I’ve had more clients die trying to get treatment than I want to remember. It’s an epidemic and a complete tragedy.”
“Iʻve had more clients die trying to get treatment than I want to remember. Itʻs an epidemic and a complete tragedy.”–ATTORNEY LISA KANTOR
To Domna Antoniadis, the purpose of all these restrictions is clear: “The idea is to make it so difficult, people just give up,” she said.
Few advocates are as well-prepared to challenge such restrictions as Antoniadis, who has been both a plaintiff in a key class-action suit and a lawyer representing eating disorder patients. She was Jane Doe in the landmark Jane Doe v. United HealthCare that the giant insurer agreed to settle in 2021. The agreement required United to pay more than $18 million to settle allegations that the company violated patients’ right to mental health coverage under federal parity regulations.
“I did my first inpatient treatment in my early 20s, and that was actually the motivation for going to law school because I found out there were laws about this stuff,” said Antoniadis, who is now 39. “I was able to use them to fix things and I thought, ‘This is incredible.’”
Since then, she says, she has helped dozens of people get claims approved. She amassed a trove of records and submitted them as evidence to support rule changes proposed by the Biden administration to strengthen the parity law, including provisions that apply to Medicaid Those rules became final in October, three months before the end of Biden’s term. They may now become almost meaningless as the Trump administration decimates the federal workforce and Congress considers drastic cuts to Medicaid.
In part I of this series, Megan H. and Gigi T. were at a low point in their struggle with severe anorexia. Danielle Ellis, who also suffered from anorexia, sometimes despaired of getting better. But despite all their obstacles, Megan, Gigi, and Danielle – three women with eating disorders – are all in recovery. Megan is back full time as a trauma nurse in San Diego, and Gigi is in college. Danielle Ellis is working with young students in Georgia. All are quick to say they are lucky.
“I have at least a dozen people I know that didnʻt make it,” Ellis told me. “And thatʻs scary to think about because that could have been me.”
They also say the struggles they went through with obtaining coverage for treatment prolonged their sickness. “When you’re getting all these letters from insurance companies denying care, it completely fuels the disease,” said Megan H. “Your family and friends are telling you you need help, but the insurance company is telling you that you’re not sick enough. And you internalize it as ‘Youʻre not deserving enough.’”
Danielle Ellis, who was eventually treated by a dedicated team of eating disorder specialists, puts it this way: “For a long time, I really didn't care if I lived. But the doctors and staff cared, and that made me try even when I was ready to give up. Having people care and believe in you makes you believe in yourself. That’s what I wish everyone understood.”
Melanie Haiken is an award-winning journalist who has written for Smithsonian, National Geographic, the BBC, CNN, AARP, Health magazine, MindSite News, Sierra magazine and the Washington Post, among others. She has a personal interest in the subject of eating disorders. “As the mother of a child who spent many years in treatment for anorexia and bulimia, I encountered these barriers myself. And in the parent support groups I attended, I shared the experiences of other families hit hard by the expense of treatment and the denials of insurance support."