Part 1 of Deadly Denials, a four-part series supported by the Pulitzer Center.
The worst moment in Beth T’s life came on a Thursday afternoon in June 2020, when she got a call from McCallum Place, a residential treatment facility for eating disorders in St. Louis, Missouri. Beth’s daughter Gigi (a pseudonym) had spent five months there being treated for severe anorexia. Gigi, then 14, had refused food for weeks and was on a 24-hour feeding tube. Nonetheless, an official at McCallum Place told her, Gigi had to go home. “They said insurance is done and you have to pick her up tomorrow,” Beth recalls.
“I asked, ʻHow are my husband and I supposed to do the work of a five-person medical team here at our home?ʻ” said Beth. ”And they said, ʻWell, we don’t know, but insurance is quitting so you have to come.”
After multiple frantic calls, Beth managed to get a one-day extension. She describes what happened next: “They met us in the parking lot on Saturday morning with two Ziploc bags full of medications with labels on them and all these instructions on how we’re supposed to administer them to her. ʻHere are the ones that are about to run out – you’ll need a psychiatrist to get that done. These are the ones where she has some left.’”
In a stroke of luck, the family found an outpatient eating disorder specialist willing to take Gigi on despite the short notice. But to keep her safe at home, one parent had to be with her at all times, requiring Beth and her husband to take repeated leaves of absence, trading off week by week. Sadly, the parents were all too familiar with the exhausting demands of caring for a child with an eating disorder – Gigi’s older sister had previously spent years in treatment for anorexia as well.
McCallum Place did not reply to repeated requests for comment.
Fortunately, Gigi got regular outpatient care and gradually improved over the next year. She was eventually able to return to school, as long as her parents closely supervised her with regular outpatient care and strict supervision during meal times. But the respite was short-lived. Gigi has been in and out of residential and partial hospitalization programs six more times, a revolving door her mother attributes in part to repeated delays, denials and premature step-downs by their insurance carriers.
“I’ve been with several different insurance companies and all of them are the same,” Beth said. “They only approve a week of residential treatment at a time. It’s just week to week and they can drop you from one day to the next.”
In many cases, she said, the treatment programs get so frustrated negotiating with the insurer for extensions that they discharge the patient. Even when claims are approved, they cover only part of the expense. Beth said her family has paid tens of thousands of dollars in out-of-pocket costs for Gigi’s treatment over the years, and one recent bill for seven months in a treatment program left them with $3,740 in out-of-pocket expenses.
The deadliest mental health disorder
Eating disorders are the deadliest of all mental health conditions (not including substance use disorders) and claim, on average, 10,200 lives a year, or one every 52 minutes, according to the National Association of Anorexia Nervosa and Associated Disorders. More than a fourth of people with an eating disorder attempt suicide. Rates have soared since the start of the pandemic in 2020, with eating disorders among teens more than doubling, the UMass Chan Medical School reports. A separate report found a 108% jump in the percentage of children treated for an eating disorder and a 131% increase in claims during the Covid pandemic.
Like Gigi’s parents, many families find themselves paying thousands of dollars in out-of-pocket fees. But the stress and anxiety from exorbitant bills pales in comparison to having treatment for an eating disorder denied outright.
Two years ago, Megan H. left her job and her apartment and went home to spend her final days in hospice, supervised by a palliative care team. Down to 80 pounds on her 5’8” frame and medically unstable from the effects of severe anorexia, she was ready to give up. “I couldn’t even get down the stairs in my apartment. I couldnʻt shower,” she said. “The insurance battle trying to get my HMO to approve the treatment I needed was just insurmountable. I was so worn down, I said, ʻI’m done with this. It’s going to be the same cycle and I can’t do it anymore.ʻ”
It didnʻt have to be this way – there was a place waiting for her at the ACUTE clinic at Denver Health Medical Center, which specializes in treating eating disorder patients with serious medical issues such as malnutrition and cardiac instability. Megan had been treated at ACUTE once before, and achieved a period of recovery before the downward spiral began again. But this time, the insurance company deemed out-of-state treatment unnecessary and directed Megan to a local southern California psychiatric facility.
That facility had other ideas. “They said ‘Absolutely no way, she’s not medically stable, we’re not equipped to handle that,’” Megan recalled.
The catch-22 was nothing new for Megan, who first began restricting food and over-exercising as a junior in high school. Now 40 and an ICU nurse in San Diego, she’s spent more than half her life struggling with the disease. For the previous three years she had spent much of her time on a feeding tube, infusing herself through a port in her abdomen.
Megan’s medical team, however, refused to give up, reaching out to attorney Domna Antoniadis, a senior staff attorney at LegalHealth who has become a fierce advocate using knowledge and tactics she gained during her own battle for eating disorders coverage. Within days, the approval came through.
It didnʻt have to be this way – there was a place waiting for her at the ACUTE clinic at Denver Health Medical Center, which specializes in treating eating disorder patients with serious medical issues such as malnutrition and cardiac instability. Megan had been treated at ACUTE once before, and achieved a period of recovery before the downward spiral began again. But this time, the insurance company deemed out-of-state treatment unnecessary and directed Megan to a local southern California psychiatric facility.
At that point Megan declined treatment: She was physically weak and had already accepted hospice care. But she rallied soon afterward and changed her mind.
“I was life-flighted to Denver, which saved my life,” Megan said. “But it was quite a fight to get there. And it was a very close call.”
Stories that are all too common
These stories from Megan H. and Beth T. are not outliers; they represent an all-too-common scenario faced by families and adults with eating disorders around the country. A 10-month investigation by MindSite News has found evidence that many health insurers and managed care organizations have pursued practices that limit care for eating disorders instead of meeting the growing need for services.
Insurers typically deny claims in one of two ways: They impose numerical limits in policies on the number of visits or days of coverage an insured patient can receive. Or, more commonly, they issue denials based on their contention that a particular treatment is not medically necessary, requires prior authorization or must be preceded by a less intensive (and less expensive) treatment. These kinds of denials are known by a wonky term: non-quantitative treatment limitations (NQTLs).
Unpublished data reveals the barriers
Until recently, little hard data was available to document the impact of these restrictions, but that has changed. In 2021, the Eating Anxiety Treatment (EAT) Lab at the University of Louisville in Kentucky and Project HEAL, a nonprofit that helps people with eating disorders find services and seek insurance coverage, joined forces to survey eating disorder patients.
Unpublished data shared with MindSite News by researchers at the EAT Lab showed that people with both private and public insurance faced major obstacles getting treatment for eating disorders. But on nearly all metrics, publicly insured patients had a harder time getting services and coverage. Specifically, they found:
- 57.6% of those with public insurance said they were unable to access a qualified eating disorder provider in their insurance network, compared with 37.5% of those with private insurance.
- 37.8% of people with public insurance reported having claims for eating disorder services denied, compared with 26.1% of those with private insurance.
- Those on public insurance, who are likely to be lower income, reported higher out-of-pocket costs, spending an average of $29,000 a year vs. an average of $7,000 for those with private insurance.
Survey: 96% of patients encounter obstacles to eating disorders treatment
A survey by the EAT Lab researchers, published last year in Psychiatry Online, reveals the barriers to treatment experienced by eating disorder patients, including the most common reasons insurers deny their claims:
- 43% of respondents reported that their insurer considered the requested level of care to be inappropriate
- 43% said theyʻd been discouraged from seeking treatment because they didnʻt seem sick enough
- 36% reported there were no eating disorder providers in their insurer’s network
- 30% reported they were prematurely discharged from the right level of care
- 26% reported that the level of care recommended by their clinicians was denied
- 23% reported that their insurer limited the number of visits
Overall, 96% of patients and their families reported encountering at least one barrier to accessing treatment. The most common: financial barriers, encountered by 81% of patients.
“It’s a nightmare,” said Dr. Cheri Levinson of the EAT Lab at the University of Louisville. “Insurance companies are dictating the care that you’re able to give patients. We would have patients who were super sick and insurance (companies) would, say, give them two weeks of treatment. And we would say they are not ready to leave after two weeks of treatment, and they would not care.”
As an example, she cited more than one patient who was discharged from the hospital when she gained enough weight to put her over a numerical threshold for Body Mass Index (BMI) specified by the company’s medical reviewer – but was then deemed too sick to be stepped down to intensive outpatient care, the next logical level of support.
“It’s like no matter what you did – if she gained weight or lost weight – they would just come up with a reason to not give any more days of treatment even though we, the eating disorder experts, are saying she needs more treatment,” Levinson said. “This is really detrimental for treatment progress because patients know ‘I only have three days of treatment,’ and then they get so stressed out that they can’t even focus.”
To further complicate Levinson’s work, she learned in late April that two grants to the EAT Lab were abruptly terminated by the National Institutes of Health, eliminating $289,000 in funding she uses to support the work of two clinical researchers. The grants, awarded last August and originally approved to run through August 2026, are among almost 800 NIH grants abruptly cancelled by the Trump administration, according to reporting by the journal Nature.
“The supplemental award is terminated,” stated the NIH notice, because “research programs based primarily on artificial and non-scientific categories, including amorphous equity objectives, are antithetical to the scientific inquiry, do nothing to expand our knowledge of living systems, provide low returns on investment, and ultimately do not enhance health, lengthen life, or reduce illness.”
One of the EAT Lab grants pays the salary of a therapist who provides mental health treatment to eating disorder patients with serious medical complications. The other supports a PhD student who has been developing a machine learning algorithm that can help predict the likely development of eating disorders in children ages 8 to 12. Levinson said she will shift funding from other sources to cover the salary of the therapist and ensure continuity of care for existing patients, but the PhD student is halting his research and will have to work as a teaching assistant in order to complete his doctoral studies.
“We won’t allow it to impact patient care,” she said. “But in the long term, it’s going to have an impact.”
The push for parity and equitable coverage
In a recent study published in the Journal of Eating Disorders, researchers compared treatment rates for youth ages 15 to 25 in an urban adolescent specialty program and found that those with public insurance were one third as likely as patients with private insurance to receive recommended treatment. The data also showed that Latino and Asian patients were only half as likely as white patients to get the recommended treatment.
The barriers encountered by people with eating disorders are part of a wider problem: Patients who need mental health services often struggle getting insurers to cover them, despite federal and state “parity” laws requiring equivalence in insurance coverage.
In 2008, Congress passed the Mental Health Parity and Addiction Equity Act, which required group health plans that include any services for mental health and substance use to cover them on par with medical and surgical coverage. The law specifically barred these plans from requiring more stringent proof of medical necessity, greater requirements for co-pays or deductibles and stricter limits on frequency or duration of treatment than those required for medical and surgical needs. Two years later, the Affordable Care Act extended these same requirements to small group and individual market plans.
Despite these laws, a 2024 report by RTI International, a North Carolina-based research institute, found that patients went out of their insurance networks 8.9 times more often for psychiatrist office visits and 10.6 times more often for psychologist office visits than for medical visits – requiring them to pay more out-of-pocket in co-pays or to abstain from treatment.
For residential care – required for many eating disorder patients – the RTI data revealed even greater disparities, with mental health patients forced to go out-of-network 19.9 times more often for inpatient subacute care compared to patients seeking medical or surgical care in such facilities.
And although parity laws apply to Medicaid, patients on the government-funded health insurance program face even more daunting obstacles, including, in some cases, a complete lack of higher-level care.
“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 Levinson, 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.”
“We’ve had patients that we’ve essentially felt we were sending home to die because there’s nothing that we can do to get them in somewhere,” she added. At times, faced with the prospect of turning patients away, Levinson said, she and her team provided care pro bono.
Many patients enter a revolving door, in which they no longer qualify for coverage of certain services because their body-mass index (BMI), electrolyte levels, malnutrition or menstruation patterns improve slightly – even though such metrics may have little bearing on whether they’re adequately recovered from a psychological standpoint. Without adequate support, their condition then deteriorates until they are once again sick enough to require hospitalization or inpatient treatment.
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.
Chris Bond, a spokesperson for America’s Health Insurance Plans (AHIP), an insurance trade association, provided this written statement:
“First, it’s important to note 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 or assess whether the care provided would have resulted in a different treatment plan.
“Second, health insurance is regulated unlike any other industry or product. 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, every aspect of insurance is regulated or reviewed by state insurance commissioners AND federal regulators – from the cost of premiums, out-of-pockets and deductibles, to the number of providers and specialists considered in-network, to the use and speed of prior authorization in public programs. So there is a shared responsibility from a coverage and access standpoint among providers, drug makers and others to make this care easy to access too.”
As of this writing, Gigi – now 19 – is in a residential treatment program in Dallas. Just prior to that admission, she attempted suicide and was transferred by ambulance to a psychiatric ward – a bill her mother is still waiting to be reimbursed for. “The insurance company is not paying for the ambulance ride, which was several thousand dollars, because they’re saying, well, we needed pre-approval,” her mother said. “I said: ʻIn what lifetime would somebody get a pre-approval for an ambulance? Like ‘I’m going to need an ambulance next week, let’s get the paperwork going for that,’ said no one, ever.”
Part 2 tomorrow: ‘A Front Row Seat to Desperation’: The Advocates Fighting to Remove Barriers to Eating Disorder Treatment.