Unequitable Barriers to Eating Disorder Treatment are a Global Problem
Am I sick enough? The question haunts those of us battling eating disorders, and loved ones watching us suffer. The answer is — invariably — yes. For years I talked myself out of seeking life-saving care because I feared stigma. I worried people would judge me for failing at the most basic, essential task of being human: eating. I also didn’t understand the complexity of anorexia as a mental illness itself. Even though I was never hospitalized, I was always sick enough to get help.
The turning point in my illness came when I moved to Italy. Traveling is the eating disorder’s worst nightmare. Sitting for hours on planes, trains, cars. Hours that could have been spent exercising and compensating. There’s lack of structure and endless unknown variables. Unpredictable mealtimes, nutrition label language barriers, new foods, hungry companions, lack of gym access, etc.
I had one rule while walking in the streets: don’t breathe. Fresh breads and hot pizzas wafting through the air was too much for my anorexia to bear. As if just the smell hitting my nose would cause weight gain.
My friends ate at restaurants, and I made the usual excuses and burrowed further into the isolated and lonely shell that my eating disorder had turned me into.
I only chose to recover after holding my breath, exercising through hours of loneliness, and utter exhaustion became too much to bear. I don’t know if it was my Italian ancestry or the remarkable reminder that I am human: when in Milan, eat focaccia.
I joined Project HEAL as an ambassador and had the humbling experience of learning just how expensive eating disorder treatment is. I converted a 2000’s European study to today’s dollars to estimate annual healthcare costs for anorexia nervosa ($4,950 to $91,426), bulimia nervosa ($1,469 to $31,136), and binge eating disorder ($2,914 to $4,800). Eating disorders themselves are costly to maintain — in Germany and Japan, individuals with bulimia spend an average of $5,338 and $6,415 annually on food to purge.
Because treatment is so expensive, it further complicates how insurance companies determine individual rates. 20% of Britons paid for private eating disorder care in 2019, totaling $1.206B out-of-pocket spending for AN and BN alone. Americans spent $363M on eating disorder treatments in 2019 — more than 60% of them live in areas without enough psychiatrists, and even then only 40% of psychiatrists accept insurance.
As a full-time student in Milan, accessing U.S. telehealth was no easy feat, with questions like “do you take my insurance… over Zoom…” and “will you accommodate a 6-hour time difference?”
The eating disorder cost problem is two-fold: they are hard to treat, and are chronic in nature, with an average gap of six years between onset of symptoms and receiving care. I can’t say I’m surprised by this average, because myself and many others spent years convincing ourselves we aren’t sick enough for help. Even after receiving care, 20% of anorexia patients require 2-4 years for symptoms to decrease, and the other 80% need 8 years. Only one year and three months into my recovery, I’m not sure where I’ll land.
Treatments themselves are not reliably effective. 50% of all cases relapse, with a 70% chance of relapse in the first year of recovery. This is partially because 50% of all eating disorder cases and 97% of eating disorder hospitalizations have co-occurring psychiatric disorders. In my case: anxiety and OCD. For many others: autism, depression, substance abuse. It makes sense that eating disorder treatment is more expensive than other mental illnesses. Alcohol abuse and schizophrenia patients pay an average $8,900 per hospital stay, whereas eating disorder patients pay more than double: $19,400.
But eating disorder patients also require more time in the hospital. In Canada, the average eating disorder hospital stay was 33.5 days in 2021; 15-57 for anorexia, 9-45 for bulimia, and 11.8 to 21.4 for binge eating disorder, compared to 3.4-8.4 days for non-eating disorder stays. In China, national health insurance covers the first 40-50 days of hospitalization, but after that, patients will have to bear more than $3,900 per month.
These high treatment costs are not financially viable for many individuals.
80% of the 30 million Americans and 78% of 20 million Europeans with eating disorders will never receive treatment. Ultimately, the existing systems in place are not robust enough to affordably treat people for nutritional restoration while providing quality psychological support for coexisting conditions.
Perhaps a better indicator of whether someone can afford quality health care and treatment is their socioeconomic status, because it often determines their stress levels, and whether they can afford nutritious foods, body movement, and quality of sleep. Minorities and underprivileged communities are under disproportionate financial strain for treatments. Even as I want to shout to everyone reading this, “You are sick enough to get help, your internal struggle is valid, I see you!!” I know those words mean nothing to those who cannot afford the dollar commitment required for treatment.
Project HEAL is the only U.S. nonprofit providing financial support to underinsured people. They appeal insurance coverage denials, and connect people to Medicaid covered care. Project HEAL reported they helped people — LGBTQ+ (8%), BIPOC (20%), not underweight (29%), men (3%), age above 24 (59%), disabilities (13%), and undocumented immigrants — during the pandemic. I wish governments would protect vulnerable populations in future healthcare planning because of the inordinate stigma and financial challenges they face.
