As news of the ban on the TikTok hashtag “SkinnyTok” circulates, the danger of anorexia nervosa has garnered significant public attention. Anorexia nervosa has the highest mortality rate of all psychiatric conditions, with an estimated 5% of affected patients dying within four years of their diagnosis. Given the severity of the disorder, timely care is necessary. However, treatment is expensive; inpatient admissions for medical stabilization alone average $54,932, and many patients require further psychiatric and behavioral treatment afterward. Without insurance, many patients cannot afford treatment, but the mortality rate in those with severe disorders who forgo care increases to 20%. Insurance coverage of eating disorder treatment saves lives. However, not every version of anorexia nervosa meets coverage requirements.
In its “typical” sense, anorexia nervosa is a restrictive eating disorder characterized by the following criteria: restricted food intake resulting in low body weight, intense fear of weight gain, and disturbed body image/undue influence of body image on self-worth. By contrast, atypical anorexia nervosa, first described only nine years ago upon publication of the DSM-V, is an eating disorder in which all of the criteria for anorexia nervosa are met, EXCEPT that despite significant weight loss, the individual is not underweight.
The diagnosis of atypical anorexia was added to the DSM-V with the goal of increasing visibility, diagnosis, and treatment of patients with anorexia nervosa who did not meet the significantly low weight criterion. The only difference between these two diagnoses is the weight of the patient. However, despite this, it is harder to access care with a diagnosis of atypical anorexia nervosa than anorexia nervosa. Why?
The answer is simple: many insurance companies will not cover anorexia nervosa treatment unless an individual’s BMI falls beneath a specific point.
The rationale behind this is that insurance companies will only pay for treatment for those who are the “sickest,” and it is falsely assumed that the patients with the lowest weights are the sickest. However, current literature overwhelmingly disputes this notion. A 2018 study found that the amount of weight an individual loses and the rate of weight loss are more indicative of illness severity than the individual’s weight or BMI. Further research has demonstrated that because individuals with both diagnoses are subjected to a prolonged caloric deficit, life-threatening complications like electrolyte imbalances, bradycardia, myocardial atrophy, and refeeding syndrome, among others, occur at very similar rates between the two disorders. Other studies have found that individuals with atypical anorexia nervosa often experience more severe eating-related psychopathology than individuals with anorexia nervosa, largely due to the fact they are not perceived as “sick” by their peers or clinicians.
Existing research clearly demonstrates that like “typical” anorexia nervosa, atypical anorexia nervosa is a severe disorder, and weight restoration accompanied by some form of psychotherapy significantly improves outcomes. As such, it is entirely unfair for insurance companies to determine a patient’s treatment coverage based on their weight or BMI.
What needs to change?
The major call to action is directed at state insurance commissioners and state legislatures, as they regulate what insurance companies must cover. Insurance plans need to eliminate BMI requirements for anorexia nervosa treatments. This would actually be of benefit to insurers, as covering treatment upfront would result in shorter treatment durations than if individuals are forced to delay care until they meet the standard of “sickness,” and it would reduce the over 53,918 ED visits that insurers typically cover annually due to eating disorder-related events.
Most states require insurers to provide mental health treatment through their mental health parity laws, but historically avoided extending these laws to eating disorder treatment, as eating disorders were not explicitly mentioned. The 21st Century Cures Act, passed in 2016, is a federal law that sought to clarify that eating disorders are subject to mental health parity laws and makes it much harder for insurers to refuse to cover eating disorder treatment. In order to make eating disorder care truly accessible, this law should be amended or further legislation should be passed to eliminate BMI requirements for coverage.
In the meantime, physicians can also play a role by ensuring that they document cases of atypical anorexia nervosa and continuing to research this disorder. BMI will likely continue to be used by insurance companies as a marker of medical necessity until insurers are convinced of the severity of atypical anorexia nervosa, and further research is the best way to establish this.
Moreover, because patients with atypical anorexia nervosa are currently less likely to have their care covered, it is essential that physicians watch out for risk factors and warning signs of atypical anorexia nervosa. If physicians educate themselves on signs of atypical anorexia nervosa, they may be able to intervene early and help patients avoid requiring care they cannot afford. This requires challenging pre-existing notions about what anorexia nervosa looks like, and actively working to unlearn the harmful idea that weight is the sole marker of illness severity.
Finally, patients should not be afraid to be their own advocates. Though the burden of accessing care should not fall on patients, until changes in insurance plans are made, patients in need of care for atypical anorexia nervosa should feel empowered to call their insurance companies and petition for their treatment to be covered. The National Eating Disorders Association offers many sample letter scripts for discussing eating disorder treatment coverage with insurers, along with telephone scripts for having these conversations. Though direct negotiation may not always be successful, it can lead to partial coverage or single case agreements.
Eating disorders are devastating mental illnesses that cause serious harm to individuals of all weights, and individuals of all weights deserve treatment. A BMI measurement is not the indicator of health that it was once thought to be, and it has no place in determining who receives eating disorder care. It is time for insurance companies to change plans to make eating disorder treatment accessible for all, irrespective of weight.
Carlin Lockwood is a fourth-year medical student at the University of Chicago Pritzker School of Medicine. She is applying for residency this year and intends to enter the field of medicine-pediatrics. Prior to starting medical school, she received a Master of Science in Human Nutrition from Columbia University, where she conducted thesis research aimed at increasing understanding of atypical anorexia nervosa.
Image by Getty Images
