In South Dakota, for example, not a single residential treatment program in the entire state

Part 4 of Deadly Denials, a four-part series supported by the Pulitzer Center.

See yesterday’s story: Eating Disorders: They Don’t Just Happen to Skinny, White Affluent Girls

Geography doesnʻt seem like it should play a role in the landscape of eating disorders treatment, but in fact families and patients seeking rural mental health in small towns and cities and less populated states have far less recourse when it comes to treatment options than those on the east and west coasts and big cities in between — especially when it comes to eating disorders.

Thatʻs the reality Sioux Falls, South Dakota, residents Todd and Kimberly Peterson faced in 2019 trying to get help for their daughter Brittany, who was diagnosed with anorexia at 13. (MindSite News has changed their names to protect their confidentiality at their request.)

“Sioux Falls has about 250,000 people, and at that time there was just one person we could find that was seeing patients with eating disorder issues,” Todd said. Working with that therapist, they put a family-based treatment plan into action, but Brittany lost weight rapidly over the next few months.

“At that point, the therapist recommended doing inpatient hospitalization or residential treatment, and she was pretty serious about it,” said Todd. “She said if we don’t do this, she was afraid Brittany might not make it through.”

That was when the Petersons discovered that there wasnʻt a single residential treatment center in the entire state. After an extended search, they found a placement in Chicago, a nine-hour drive away. The distance became even more problematic when Brittany was stepped down to partial hospitalization (PHP), requiring Kimberly to take a leave of absence and find an apartment in Chicago while Todd remained in Sioux Falls caring for the coupleʻs other two children.

“What a hard time of life to be completely isolated only because you don’t have treatment in your own hometown,” Kimberly said “She was so young to be so far from home. It was really hard on her.”

“It’s a tragedy how we’re not serving our farmers, our rural communities.”

—FAITH CARLSON, THERAPIST AND EATING DISORDER SPECIALIST

The dearth of local treatment options again came into play again when Brittany completed outpatient treatment and returned home four months later.

“She was still actively battling her eating disorder all of that next year and she didn’t have a group that she could go to here, whereas in Chicago she had gotten so much peace and comfort from having other girls who knew what she was going through,” said Kimberly. “And we as parents had no support group.”

Desperately seeking rural mental health services

Research conducted by the EAT Lab at the University of Louisville and Project HEAL shows that the Pettersonsʻ experience is not uncommon. A survey of eating disorder patients between January 2021 and June 2022 found that 34% of eating disorder patients were unable to find a treatment provider nearby, while 19% had no treatment centers available in-state. It’s even harder for patients insured through Medicaid.

“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 and a founder of the Louisville Center for Eating Disorders.

Her 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,” Levinson said.

“It’s a tragedy how we’re not serving our farmers, our rural communities,” said Faith Carlson, who became Brittany’s therapist and then opened her own disorders treatment practice, Victus Recovery, in Sioux Falls.

With a background in nonprofits and community clinics, Carlson was determined to take Medicare and Medicaid when she set up her clinic.  “Our Native American populations on our reservations have zero coverage, none. Thereʻs nobody helping, no access to resources. This is an untouched population and it’s alarming.”

“I went through the process of becoming approved, and then I submitted the claims for six months, and not one of my claims got reimbursed,” she said. “I wasn’t going to send these patients to collections. I wasn’t going to ask for money from people who are already struggling. So I had to make the very hard decision to stop accepting public insurance in order to build my business and keep the clinic open.”

In a written statement, Chris Bond, a spokesperson for America’s Health Insurance Plans (AHIP), an insurance trade association, noted that health plans follow the latest guidelines on reimbursement.

“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, he wrote.

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…Every aspect of insurance is regulated or reviewed by state insurance commissioners and federal regulators.”

 

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Select References

Penwell TE, Bedard SP, Eyre R, Levinson CA. Eating Disorder Treatment Access in the United States: Perceived Inequities Among Treatment Seekers. Psychiatric Services. 2024;75(10):944-952.doi:10.1176/appi.ps.20230193

Timothy Walsh et al, A Systematic Review Comparing Atypical Anorexia Nervosa and Anorexia Nervosa, International Journal of Eating Disorders, August 2022

Bowman Family Foundation, Equitable Access to Mental Health and Substance Use Care: An Urgent Need, a Patient Experience Survey, July 2023, Conducted by NORC, University of Chicago

RTI International, Behavioral Health Parity – Pervasive Disparities in Access to In-Network Care Continue,  Tami Mark, William Parish, April 17, 2024

Disparities in Access to Eating Disorders Treatment for Publicly-Insured Youth and Youth of Color, a Retrospective Cohort Study, Marissa Raymond-Flesch, UCSF corresponding author Ruby Moreno, Sara Buckelew et al, Journal of Eating Disorders, 2023

HealthCare Insights, Mental Health Utilization Trends, LexisNexis, 2023 (data compared 2019-2023)

Pushing for patients in a system that is “overwhelmingly broken”

Part 2 of Deadly Denials, a four-part series supported by the Pulitzer Center.

See yesterday’s story: The Deadly Cost of Eating Disorders: How Insurance Providers Delay, Restrict and Deny Care

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.

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.

The kitchen of the Louisville Center for Eating Disorders is equipped with lockers, comfortable seating and affirmations to support patients on a journey to healing. Photo: Natosha Via

“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 Rachel* 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, and in December 2024, Odyssey quietly sold to JLL Partners, another PE-backed behavioral health company. Levi, the former owner, contacted MindSite News by email in response to this story to express her disappointment with the closing of the program.

“What a slap in the face,” she wrote. “Their commitment to the programs was smoke and mirrors. Such a huge disappointment.”

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 treatments 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.

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 the severed 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.”

*Note: This story has been updated to add Rachel Levi’s correct first name, which was misidentified due to an editing error, and to add her comments on the regrets she has in selling her treatment program to Odyssey Behavioral Health in 2021.

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Select References

Penwell TE, Bedard SP, Eyre R, Levinson CA. Eating Disorder Treatment Access in the United States: Perceived Inequities Among Treatment Seekers. Psychiatric Services. 2024;75(10):944-952.doi:10.1176/appi.ps.20230193

Timothy Walsh et al, A Systematic Review Comparing Atypical Anorexia Nervosa and Anorexia Nervosa, International Journal of Eating Disorders, August 2022

Bowman Family Foundation, Equitable Access to Mental Health and Substance Use Care: An Urgent Need, a Patient Experience Survey, July 2023, Conducted by NORC, University of Chicago

RTI International, Behavioral Health Parity – Pervasive Disparities in Access to In-Network Care Continue,  Tami Mark, William Parish, April 17, 2024

Disparities in Access to Eating Disorders Treatment for Publicly-Insured Youth and Youth of Color, a Retrospective Cohort Study, Marissa Raymond-Flesch, UCSF corresponding author Ruby Moreno, Sara Buckelew et al, Journal of Eating Disorders, 2023

HealthCare Insights, Mental Health Utilization Trends, LexisNexis, 2023 (data compared 2019-2023)