Eating Disorders Don’t Discriminate: Everyone Deserves Timely Care
By Diana Lemly, MD
Eating disorders are ravaging this country. With the onset of the COVID-19 pandemic, the numbers have skyrocketed while treatment is even further delayed. As a primary care physician specializing in treating patients with eating disorders, I have seen an alarming increase in the severity of symptoms and the need for inpatient hospitalization. For the nearly 30 million Americans that will suffer from an eating disorder in their lifetime, delays in treatment can prove deadly.
Despite the rising prevalence, too many barriers to treatment remain. Unfortunately, most physicians lack specialized training to identify or diagnose eating disorders. Society has also conditioned us to believe eating disorders afflict only young, white, thin, and affluent women. But in reality, they can affect anyone, regardless of age, gender, ethnicity, socioeconomic background, or weight.
This misperception often leads to the underdiagnosis and undertreatment of eating disorders in patients who are not white women. A new study by JAMA Network Open found older adults, children, men, and certain racial and ethnic groups are commonly overlooked in U.S. clinical trials focused on eating disorders. However, a disturbing rate of eating disorders actually occurs within historically marginalized communities, including BIPOC, LGBTQ+, and those suffering homelessness and food insecurity. Recent research by The Trevor Project shows LGBTQ+ youth are at greater risk of eating disorders than their peers.
Sadly, those disproportionately affected are receiving less care. Even when patients do seek help, barriers remain high. Many seeking help experience trouble locating outpatient providers covered by their insurance, while high out-of-pocket costs for residential programs keep intensive treatment out of reach. Reimbursement rates are so low many providers do not accept any form of insurance. As a result, only patients and families that can afford to spend thousands for weekly visits (sometimes lasting years) receive treatment.
While significant disparities exist across healthcare, few other medical conditions exhibit such extreme differences in available care. The treatment of eating disorders frequently involves the care of multidisciplinary treatment teams, and often insurance (especially government health insurance plans) will not cover nutrition and therapy services. In comparison, I can refer my patients diagnosed with heart failure or cancer to needed specialists—regardless of their insurance carrier.
To make matters worse, weight is commonly used by insurance as the primary marker of severity. This is an incomplete metric: Patients that are not considered “underweight” face the same range of life-threatening complications. These guidelines are particularly disarming when the disorder itself often makes patients feel ambivalent about seeking care.
As with most diseases, eating disorders become more severe and harder to treat the longer one is sick. The sooner a patient gets appropriate treatment, the more likely they are to recover. When care is denied, my patients describe feeling like they must increase their harmful behaviors to be “sick enough” to deserve treatment. They have taken a brave step to request help, but their suffering is invalidated.
Absurdly, it is as if they must get “even worse” before they are “allowed” care. Such policies don’t make financial or moral sense. Insurance doesn’t do this for cancer; indeed, just the opposite. Usually, one would not be denied appropriate treatment because they present at stage 1 and have to be sent away to wait until it has metastasized.
It is unfair that patients with eating disorders are forced to advocate and claw their way into treatment after outdated clinical criteria have been used to deny care or their symptoms have been overlooked because of their identity. In the U.S. someone dies from an eating disorder every hour. Though more than half of those treated will recover, many patients are never even diagnosed or referred to care. Continuing to ignore these barriers will only lead to more suffering and death.
I want to offer the best care to all my patients. Despite their strength, they cannot change the healthcare system on their own. This nation must make sure patients with eating disorders from all backgrounds get the timely care they deserve.
About the Author
Diana Lemly, MD, is a physician in Internal Medicine and Pediatrics, specializing in the care of adolescents and young adults. Since 2014, Dr. Lemly has been on faculty at Massachusetts General Hospital and Harvard Medical School, where she provides primary care and specialty care at the MGH Back Bay Clinic and in the Division of Adolescent Medicine. In particular, she provides specialized medical care for adolescents and adults with eating disorders, collaborating with therapists, dietitians, and other physicians throughout the region.
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