Before you read further, I’m going to give you a spoiler alert. This is not a happy story. There is heartbreak. There is failure. There is pain. There is loss. There is death. But a story of hope is not always a story of happiness. And with 30 million protagonists, at least a few are bound to develop a plot that prompts hope. At least, the odds are in my favor.
I’m talking about the 30 million Americans who have had, have, or will have an eating disorder. Over 28 people die from eating disorders every day—more than one every hour. The numbers are grave. And in the aftermath of COVID-19, the numbers are growing.
There are many stories I could tell you about a single person with an eating disorder that would show you just how serious the disease may become. I could tell a story about someone who has an eating disorder that is so debilitating and all-consuming that they cannot work and ultimately lose their job. Or a story about someone who is so isolated by their disorder that they cannot maintain social relationships and lose their friends and their family. Or a story about someone whose illness is so medically serious that they may not survive without emergency intervention. I could expand the character pool further and profile parents that go bankrupt, or mortgage their home a second time over, just to pay for inpatient care for a child with an eating disorder. Or I could focus on a clinician who loses faith in the system and quits working at a treatment facility because of the frequent failure of treatment for patients. And trust me; those protagonists are real, with stories worth telling.
But the sheer immensity of the problem of eating disorders in the United States, the lack of care and coverage for them, and the ultimate impact on individual lives cannot be adequately captured through the lens of one protagonist or even one class of protagonists. I challenge the idea that any one person with an eating disorder can be a representative for the experience of any other person with an eating disorder. Eating disorders are by their very nature highly individualized and idiosyncratic mental illnesses. Boiling the complexity of such a disease down to a single person oversimplifies the disease at the risk of invalidating under- and unrepresented experiences.
Boiling the complexity of such a disease down to a single person oversimplifies the disease at the risk of invalidating under- and unrepresented experiences.
Notice I have not used a gendered or otherwise illustrative adjective to describe someone with an eating disorder yet. But surely you have a mental image in your mind already of who that person is. You get my point. No one is benefited by the reinforcement of pernicious stereotypes.
But as diverse as their experiences and manifestations of eating disorders are, patients with eating disorders share one thing in common: the need for care. And that often means the need for health insurance. It seems simple: a patient pays for health insurance. A patient later needs medical care. The health insurance company pays for the medical care the patient now needs. End of story. With nearly 30 million people requiring care, health care coverage should be simple. Or so you would think.
A few definitions.
The Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association, is considered the leading guide for mental health professionals who diagnose eating disorders and other mental illnesses. Each new edition is influential if not also dispositive for diagnosis in the medical world. Ideally each new edition is an improved iteration on the past edition, with increasingly sensitive and accurate diagnostic criteria in each revision. The DSM-V, the most recent edition, separates eating disorders into discrete categories: anorexia nervosa, bulimia nervosa, binge eating disorder, avoidant restrictive food intake disorder (ARFID), pica, rumination disorder, and the catch-all categories of “other specified feeding or eating disorders” (OSFED) and “unspecified feeding or eating disorders” (UFED). One criterion for eating disorder diagnoses is biometric: someone’s physical weight. But being a mental illness, eating disorders—and their criteria in the DSM-V—are classified mainly by behavioral metrics based on the patient’s habits: what is eaten, how much is eaten, when it is eaten, in what way it is eaten, whether eating is accompanied by compensatory behaviors, how frequently those behaviors are exhibited, the list goes on.
But it is much harder to change “science.”
It is hard for us as humans to understand what an eating disorder is and the harm it causes when we lack physically identifiable markers that serve as signals that something beyond the surface is wrong. When we see someone with a broken leg in a cast, walking with crutches, we are sympathetic. The health issue is obvious. But eating disorders, perhaps far more debilitating and in all likelihood much longer lasting than a broken leg, are rarely met with the same public sympathy because they often are not “seen,” or at least most are not nearly as obvious. Popular rhetoric around these stereotypes can be battled to an extent, and many individuals and advocacy groups are working on just that: unwinding the stereotypes that persistently invalidate the existence of certain eating disorders. But it is much harder to change “science.”
Medical diagnosis lends legitimacy to an illness. If a doctor says an illness exists and a patient suffers from it, we are more likely to believe the patient is struggling—even if we can’t see their symptoms. But a definition of the illness necessarily precedes diagnosis. Case in point: the DSM was first published in 1952. Eating disorders were not included until the DSM-III was published in 1980. And binge eating disorder was not included until the most recent edition, the DSM-V, was published in 2013. Albeit over the course of more than half a century, the DSM has made progress in identifying eating disorders, which has led to increased treatment options for many patients who otherwise may have continued to suffer in silence. Patients with eating disorders now obtain treatment that would have been utterly unimaginable in 1952.
Naming a mental illness is powerful. If there is no definition of a mental illness, there is no scientific way of identifying the illness, so there will consequently be no diagnosis, and in our minds, there must be no disease. And only diagnosed diseases are given robust medical care and attention. But medical treatment still lags behind the slow shift in definitions and diagnoses for eating disorders. And for eating disorders, even a definition in the DSM-V is not always enough to obtain treatment.
But there is another definition that is more important—even more important than the definitions of eating disorders themselves—for people who need treatment: “medically necessary.” Oddly, what is considered “medically necessary” has nothing to do with the DSM-V or the American Psychiatric Association. And it has little to do with what medical professionals actually think is necessary for medical treatment in a particular case. But it has very much to do with the care that a patient with an eating disorder ultimately receives.
“Medically necessary” in the context of healthcare coverage is a term that is defined by insurance companies themselves. The term dictates what those companies do, or do not, consider to be a medical service that they will pay to cover. Many forms of plastic surgery, for example, are considered aesthetic procedures and thus not “medically necessary” under the terms of many insurance plans. An ER visit after a heart attack, on the other hand, is very much “medically necessary” under most—if not all—plans.
For most insurance companies, coverage of eating disorders lies somewhere between cosmetic surgery and a heart attack on the spectrum of “medically necessary” services. Some companies cover little more than emergency room visits for patients who are severely underweight. Others will cover a bare minimum of time in recovery centers—maybe just a week or two—before refusing to cover further services. Roughly one in five insurance plans do not cover eating disorders at all. And when they do provide coverage, insurance companies do not have to follow APA guidelines, or the DSM-V, or any leading experts in the field. They simply decide what they will or will not cover for eating disorders. And eating disorder treatment centers must comply with those coverage limits in their treatment of patients who have that insurance coverage, which means discharging patients before they are ready because insurance refuses to pay or refusing to admit the patients because insurance will not cover admission.
As one director of an eating disorder treatment center in the northeast described her experience with insurance companies, the level of care she can provide the patient depends far more on the insurance plan than it does on the patient. Two patients could enter her treatment center with identical eating disorders, identical symptoms, and identical weights, bloodwork, and physical status. But if they have different insurance plans, their treatments may look drastically different. It’s even possible that one would be admitted to the treatment center and the other would not. One insurance company might consider the care “medically necessary.” The other, looking at the same patient, might not.
“But there should be some standardized criteria for care. It can’t be this random.”
“It’s really very frustrating,” the treatment center director said. “It’s a different kind of care we’re giving patients just based on their insurance.” The director went on to say that standardization of coverage for eating disorders among insurance plans was desperately needed. “I’ve been advocating for that for years and years. I don’t think it’s going to happen. I’m told it’s not going to happen—that it’s a fantasy on my part. But there should be some standardized criteria for care. It can’t be this random.”
Rebecca Lester was first diagnosed with an eating disorder and treated at the age of eleven, and then was treated again after she relapsed when she was eighteen. Lester spent close to two decades of her life battling eating disorders. Twenty years later, she considers herself a success story of eating disorder recovery. And in no small part because of her own experience, she became a medical and psychological anthropologist. Lester spent seven years conducting field research at Cedar Groves Eating Disorders Clinic in Wisconsin, interviewing patients and clinicians alike, and running her own therapy groups. Her work culminated in the book Famished, published in 2019.
When working at Cedar Groves, Lester met a patient she called “Sheila.” Sheila was binging and purging up to fifteen times per day, restricting her food intake, and abusing laxatives. She had textbook symptoms of bulimia nervosa and was effectively incapacitated by her eating disorder. “She was binging and purging all day every day,” Lester said, shaking her head. “Her mood would go up and down. She was suicidal. All that kind of stuff. And when she did take her medication, she was still purging. So, it wasn’t really working.”
“But,” Lester continued, “she was a normal body weight and her labs looked good—inexplicably. I’m not sure how, but they did.” And for Sheila’s insurance company, that meant any treatment beyond a once-per-week therapy session was unnecessary, or at the least, was not “medically necessary.” Sheila looked physically fine on paper. And that’s all the insurance company cared to see.
Sheila looked physically fine on paper. And that’s all the insurance company cared to see.
“We had the hardest time getting coverage for her,” Lester said. “The fact that she was miserable and really debilitated in her everyday life was not enough.” Sheila needed something more intensive than outpatient therapy, which seemed to make Sheila’s binging and purging worse. But her insurance refused to bump her care to a higher level. Because the current care seemed ineffective, because Sheila seemed “normal” physically, and because Sheila’s insurance company refused to cover a higher level of care, Cedar Groves was forced to discharge Sheila. She returned home to a complicated family with little infrastructural support for her recovery. To the contrary, Sheila’s mother even gave Sheila diet pills.
Sheila’s discharge was not predicated on the conclusion that Sheila was not bulimic—she most assuredly was. Her discharge had nothing to do with her mental illness at all. It had everything to do with her physical presentation of that illness, because only those physical symptoms were determinative of “medically necessary” treatment under her insurance plan.
Sheila’s case forms part of a complicated, yet predictable pattern in eating disorder treatment: the endless insurance battle that triangulates the patient, the treatment center, and the insurance company itself. The dynamic is hard for clinicians to navigate. They struggle with how to diagnose their patients and how to report on progress in a way that will ensure their patients obtain and retain coverage.
“You have to make it very clear that this person is in medical danger if they are discharged.” Lester said. “Or that they are self-harming. It’s like: if she’s not about to have a heart attack, we’re not going to give the care.” Clinicians have to proceed with caution when working with their patients’ case managers, who report to the insurance companies. “It’s not just about what you say, but also what you write down. You have to be really careful to frame it in a way that speaks to what they’re looking for.”
As another clinician described it: “You’re always doing a dance. You have to say: they are complying and doing well, but they are not doing so well they can be discharged. You have to be in the ‘sweet spot’ to get extended care.”
You’re always doing a dance.
In Famished, Lester writes about “Caleigh,” a patient who had chronically starved herself. When Caleigh began receiving nutritional therapy as part of her treatment, she rapidly gained the kind of weight clinicians call edema. Edema is a swelling and collection of water in the body’s soft tissue that is often the consequence of a significant spike in insulin secretion and salt absorption during the “re-feeding” period of people who have suffered from starvation. Caleigh gained several pounds of edema-related weight. She gained enough that she met the minimum threshold for a “normal” weight. The weight she gained was not “real” weight. But it was a number on the scale that meant Caleigh satisfied the threshold imposed by her insurance company. Beyond that number, her insurance considered further care unnecessary. Caleigh was discharged.
Of course, Caleigh was bound to lose that edema-related weight. And just a few weeks later Caleigh relapsed. Having lost significant weight, she called Cedar Groves and begged to be readmitted. But Caleigh’s relapse indicated to her insurance company that her previous treatment at Cedar Grove had “failed.” Insurance refused to pay. And Cedar Groves had no choice but to refuse to re-admit her.
One clinician described treating a patient like Caleigh as “damned if you do, damned if you don’t.” Treatment centers have to discharge patients when they do not comply with treatment and do not gain weight—because the treatment center’s attempted plan is not “working”—and also when patients do comply—because the patient is doing so “well” that further care is not “medically necessary.” And insurance companies may demand utilization reviews, which are clinician reports on a patient’s status that the insurance company uses to determine whether the patient needs continued care, as often as every two days. For most eating disorders, optimal treatment length to maximize the likelihood of recovery is roughly two years, even with the strongest support system and best coverage. But insurance companies largely do not see eating disorders as chronic illnesses; they see emergencies that require constant, day-to-day re-evaluation.
As a clinical director said simply: “It’s maddening. It’s just maddening.”
Rebecca Eyre is the CEO of Project HEAL, a nonprofit dedicated specifically to battling the financial difficulties that burden patients and caregivers seeking treatment for eating disorders. She has spent years working as a therapist, a clinician, and now as an executive and strategist to fight eating disorders. After growing up in a household where both her mother and her sister struggled with eating disorders, Eyre was compelled to help others similarly situated.
One of the primary responsibilities of a clinician is ensuring patients who seek care can cover their care before they can be admitted for treatment. Eating disorder treatment is expensive for all involved, including the treatment centers. And treatment centers would be short-lived without a reliable financial lifeline. To ensure people with eating disorders can receive treatment in general, it’s a necessary evil to turn away patients who cannot be covered. But turning away patients who clearly need care is not an easy burden to bear.
“Of the maybe fifteen types of insurance we took at the center where I worked,” Eyre said, “only one reliably trusted our diagnoses and accepted our recommended treatment plans. Outside of that, it was fighting tooth and nail every single time.”
Patients were often denied coverage. But one experience at a treatment center in the Pacific northwest nearly made Eyre leave the field altogether. One day, a fourteen-year-old boy with anorexia nervosa and a history of self-harm came to her clinic. People with anorexia nervosa specifically are eighteen times more likely to commit suicide than people without eating disorders. Given his mental health history, Eyre pushed hard for the boy’s admission to the clinic.
“It was fighting tooth and nail every single time.”
“We argued our hearts out,” she said. “Our whole team came together. We expressed deep concern for his safety. But the insurance company denied his claim.”
The boy did have anorexia nervosa, but he was not severely underweight. Only about six percent of people with eating disorders are underweight. But because the boy lacked that single, biometric indicator of “medical necessity,” his insurance denied care. And since there was no impending emergency requiring hospitalization, he could not be admitted through any alternative route. The treatment center reluctantly rejected the boy’s application for care. The boy left. He went home. And he killed himself.
“It makes me cry every time I talk about it,” Eyre said. “We knew that would happen. We knew that, and the insurance company deliberately ignored us. And someone died. And that unfortunately is not an unusual story. Half the deaths attributed to people with eating disorders are deaths by suicide. That’s why it’s so important for insurance companies to understand that this is a mental health condition, not just a ‘medical’ condition.”
“That’s why it’s so important for insurance companies to understand that this is a mental health condition, not just a ‘medical’ condition.”
Shortly after that suicide, Eyre stepped away from clinical care for a few years and worked in an unrelated marketing role. Her work as a clinician had become too much. The stakes were high. And the consequences were grave.
If an insurance company denies care, eating disorder treatment centers can push back. There is an appeals process involving a “peer-to-peer” or a “doc-to-doc” review, where a doctor from the treatment center meets with a doctor from the insurance company, and the two try to compromise on what care, if any, to provide to the patient whose care regime is disputed. Escalating an insurance decision to that level, however, is never a guaranteed success.
One treatment center director described the strategy that goes into when, if ever, she decides to make the highest appeal to the regulatory agency overseeing insurance claim disputes in her state. It’s not the cases of patients who need the most intensive care who make it to that level of appeal. Those patients have the highest likelihood of being covered, because they exhibit more physical symptoms indicative of “medical necessity.” Nor is it the cases of patients who, even if they could benefit from further care at the treatment center, will at least be discharged back to stable families with a firm treatment plan in place, to which the families are committed. Rather, she appeals the cases of patients whose only lifeline and last resort is her treatment center. Those patients have neither the infrastructural support in their home lives nor, according to the insurance company, the need for medically necessary care warranting hospitalization. These patients are in the middle ground. And they risk slipping through the cracks, unrecovered and unsupported.
These patients are in the middle ground. And they risk slipping through the cracks, unrecovered and unsupported.
But as the director described the process, even when these appeals are made, they are as often unsuccessful as they are successful. It is doubly difficult because the doctors with whom the treatment center clinicians meet are often uneducated about eating disorders.
“It’s frustrating,” the director said, “because they don’t know the field of eating disorders, and yet they are making decisions that impact someone’s life.”
Even though the treatment centers often have superior knowledge not only about the patient whose claim denial is appealed but also superior knowledge about eating disorders in general, the appeals the clinicians make must still be handled very carefully. Appeals may have very real consequences for not only the patient but also the treatment center itself.
“We try not to be adversarial with insurance companies,” the director said. “I learned that lesson many years ago.”
Several years ago, the director was particularly concerned by the serious mental illness and the lack of family support for a patient who was denied coverage. The director appealed the patient’s case. She was denied. She appealed again. She was denied again. The director was such a repeated advocate for this patient’s case that the insurance company not only rejected coverage for that patient but also ultimately changed its insurance plans specifically to not cover that director’s treatment center at all. In fighting for one patient, the director lost the opportunity to treat all patients with that insurance coverage. And those potential patients lost access to needed care.
A math problem.
Different insurance providers will cover different kinds of care for eating disorders for different lengths of time. In a way, it makes sense: the diseases are highly individualized, and so is the care. Uniform guidelines—even just to cover different eating disorders as separate classes, like binge eating disorder as one category and bulimia nervosa as another—would be hard to develop. What may be enough coverage, or the right coverage, for one patient may not be even close to what another patient with the same “type” of eating disorder needs. And eating disorders manifest with, to varying degrees, both physiological and psychological components. A comprehensive care plan typically involves a care team with a therapist, a nutritionist, and a physician. The size of the care team may increase in correlation with the severity of the illness from which the patient suffers. If someone needs round-the-clock care, their care team would be much larger, and their care plan would be much more complex. And patients may oscillate between needing higher and lower levels of care. At least in part, the reason insurance coverage is unpredictable is because eating disorders are difficult to predict, too.
But insurance providers have yet another reason to avoid covering patients with eating disorders. They are are often, frankly speaking, “bad” patients in their healthcare coverage providers’ eyes. Patients with eating disorders often may make it harder, not easier, for medical professionals to treat their mental illnesses. Unlike patients who enter a hospital with a physical, fixable issue like a broken leg, patients who enter with eating disorders often do not want to be treated at all and may actively resist treatment efforts. They may refuse the diets they are prescribed and the medicines they are supposed to take. They may require months of observation and treatment. They may need scaled care, from a hospital bed to an inpatient clinic to outpatient care and therapy, and they may bounce between levels of care for years. It is part and parcel to the mental illness that the patient will actively work to obstruct the disease’s eradication. A patient’s resistance to care is a strong indication that they are in desperate need of that care. But it’s no small wonder obtaining insurance coverage for patients with eating disorders is so difficult. The companies have no idea what they will ultimately have to cover, or for how long they will have to cover it, if a patient has an eating disorder.
They are are often, frankly speaking, “bad” patients in their healthcare coverage providers’ eyes.
Moreover, eating disorders are expensive to treat. Patients with eating disorders cost more to treat than patients with any other mental illness. An average hospital stay for a patient with an eating disorder is 14 days long and results in a bill of around $19,400. The next closest mental illness is schizophrenia, with an average hospital stay of 11 days, and a bill of $8,900: less than half the hospitalization costs of an average eating disorder. And on a national scale, the cost is massive. The national cost of residential programs like the one where Lester worked, which provide the most intensive, round-the-clock care for people with eating disorders, is somewhere in the ballpark of $800mm per year. Nutrition and therapy cost around $570mm. Drugs prescribed to aid in treatment cost roughly $52mm per year. Combine high costs with a high rate of regression, relapse, and refusal of care, and there is an endless cycle of money spent with comparatively few quick or permanent “cures” seen as results. There is a reason Forbes, the Wall Street Journal, Newsweek, and many other publications have written spotlight pieces on families who are burdened by these costs. The Wall Street Journal, for example, described a patient named Meghan, whose father paid almost $1mm in out-of-pocket costs for her 16-month treatment.
Eating disorders are expensive, yes, but the Affordable Care Act requires insurance companies to spend eighty or eighty-five percent of the money (depending on the plans they sell) in their pools of premium dollars on medical care for the consumers who pay into that pool. At the end of every fiscal year, health insurance companies are required by law to pay back to consumers anything they do not spend up to that threshold. The companies quite literally must spend the money, even if they just pay it back to the people who contributed to the pool in the first place.
But it’s worth noting that even after the passage of the Affordable Care Act and the implementation of this spending requirement, a 2015 study demonstrated that about 21 percent of health insurance plans still categorically deny coverage for eating disorders. Maybe the reluctance is the unpredictability of the disorders. But as several clinicians pointed out, the surest way to make sure that money is wasted is by providing only minimum, Band-Aid-style care. Insufficient care guarantees that patients will bounce between levels of care and that disputes and appeals between treatment centers and the insurance company—which are a proportion of the administrative costs that insurance companies incur—will continue ad infinitum. For that reason, clinicians often pitch financial efficiency as the primary reason for insurance companies should accept the clinicians’ recommended treatment plans.
The surest way to make sure that money is wasted is by providing only minimum, Band-Aid-style care.
This math can feel sterile: eating disorders are boiled down to numbers, and averages, and predictions, and projections so that insurance companies can turn a profit while still paying for care. But the results of these calculations are far from sterile. Lives are at stake.
A legal movement.
Because of the significant costs and consequences of treating eating disorders, advocates in and outside of treatment centers seek to improve insurance coverage. In response, the legal landscape has shifted over time—to the benefit of patients with eating disorders—thanks to the introduction of mental health parity laws, judicial decisions, and national legislation targeted specifically at coverage for eating disorders. Not all of it passes. Not all of it is effective. None of it is comprehensive. But it is something, and the efforts are worth describing.
I already touched on the Affordable Care Act. Interestingly, several clinicians with whom I spoke said that obtaining coverage for patients on government healthcare insurance plans still is routinely more difficult than obtaining coverage for a patient with any private insurance company. But the Affordable Care Act did do something important for patients with eating disorders. Namely, it requires insurance companies to provide coverage for mental health and substance use disorder treatment at parity with medical and surgical benefits. That mandate means insurance companies cannot impose lower limits on the dollars they will spend for mental health than the limits for what they will spend on other medical and surgical services. Further, the ACA prohibits insurance companies from denying coverage to people with preexisting conditions. Before the ACA, eating disorders were often considered preexisting conditions, which could be an obstacle to obtaining any sort of healthcare coverage. However, each state was required to adopt its own benchmark plan following the ACA, and whether the state chooses to include or exclude coverage for eating disorders as part of the “essential health benefits” in that benchmark plan is up to the state. So the ACA helped—some.
Legislators introduced bills in Congress to bridge the gap left by the ACA. One such bill was the Federal Response to Eliminate Eating Disorders (FREED) Act, which was proposed in 2011 and again in 2013. This bill would have provided a number of benefits: it would have increased the budget for research and education and established a federal task force to address eating disorders. It further mandated education and training on eating disorders for healthcare providers, required eating disorder screening in schools, and most importantly, would have required eating disorders to be covered by health insurance provided under federal programs like the Employee Retirement Income Security Act of 1974 (ERISA) and Title XIX of the Social Security Act (Medicaid). The FREED Act died in committee.
But in 2016, a new bill was passed. Called the “Anna Westin Act,” this bill was named in honor of a girl who was diagnosed with anorexia nervosa at age 16, and had her treatment delayed and limited by her insurance company’s failure to “certify” her illness. Westin committed suicide when she was 21. Less robust, but more palatable to a polarized Congress than the FREED Act, the Anna Westin Act uses existing funding for the National Institute of Mental Health (NIMH) and the Substance Abuse and Mental Health Services Administration (SAMHSA) to provide training for healthcare professionals and school personal to identify eating disorders and intervene early. The Anna Westin Act also clarifies that residential treatment for eating disorders should be included as part of mental health service parity with medical and surgical services. It also created the National Center of Excellence for Eating Disorders, which provides education and training for healthcare providers and promotes public awareness of eating disorders. Efforts are currently underway to pass the Anna Westin Legacy Act, which would reinforce the existing act and expand screening, training, and identification efforts for pediatric patients and military patients (and the SERVE Act of 2021 also contributes to coverage of eating disorders for people with military health insurance). The Anna Westin Act and its legacy bill are both bipartisan efforts.
The Anna Westin Act is important. But the issue with the Act is twofold: first, enforceability, and second, the lack of funding. First, it is hard to enforce coverage on an individual scale. The law mandates parity in coverage for residential treatment for eating disorders and physical medical care. It can be challenging, and expensive, to try and enforce a parity law because showing a disparity in treatment given as compared to treatment denied is difficult. For example, in an individual case of denied coverage, there may not be evidence of a disparity in coverage because there is nothing against which that individual’s denial of coverage can be compared.
The Anna Westin Act is important. But the issue with the Act is twofold: first, enforceability, and second, the lack of funding.
Second, relying on existing funds for research means that eating disorders will continue to be underfunded nationally. Current funding for research on eating disorders, according to one estimate which puts the number around $50 million, provides just about $9 of research for every patient with an eating disorder. The Eating Disorders Coalition estimates the funding for eating disorder research to be even lower: just about $28 million per year. Compare depression, which has funding of about $328 million per year, schizophrenia with funding of about $352 million per year, and even ADHD with funding of about $105 million per year. It is worth reiterating in this context that eating disorders are deadly. More research saves more lives.
Where legislation falls short, judges sometimes step in and mandate care. A landmark decision for mental illness was issued in California in 2019 and helped improve care and coverage for patients with eating disorders. In Wit v. United Behavioral Health, Judge Spero of the Northern District of California issued a ruling after UBH wrongfully denied coverage to a class of plaintiffs with mental illnesses, including eating disorders and substance use disorders. Judge Spero listed eight principles of care that are now standards for insurance providers covering patients with mental illnesses:
- Treating the underlying condition and not just medical symptoms that are current
- Treating co-occurring mental health and substance use disorders
- Covering the least intensive and least restrictive level of care that is safe and effective
- Placing patients in a higher level of care when there is ambiguity about their symptoms
- Covering treatment needed to maintain functioning or prevent deterioration or relapse
- Allowing treatment to be completed without a specific duration of time as an element
- Considering the unique needs of children and adolescents
- Applying a multidimensional assessment that holistically treats patients
While it was a win in California, the Wit case does not necessarily apply to other states. But efforts have been made in similar cases in other states, and plaintiffs who are wrongfully denied coverage for eating disorders sometimes win against insurance companies. But it’s still a case-by-case battle that is expensive, and like most litigation efforts, it can often take years. Care and compensation for patients with eating disorders who lack adequate coverage for their illnesses thus remains a patchwork of efforts, with many gaps.