When she was 5 years old, Chevese Turner had her first binge eating disorder episode.
The 44-year-old recalls sneaking a box of colorful ice cream cones from the kitchen and eating as many as she could alone in her room.
Over the years, she found herself repeating that practice in sporadic, emotional episodes that left her with an overwhelming sense of shame and guilt.
"I realized that food was the one thing I could have for myself and I could sort of escape … and it made me feel good," said Turner, who lives in Annapolis, Md. "Over time it became a way for me to disassociate from my problems or whatever I was trying to avoid."
Turner was suffering from binge eating disorder—a mental health condition that includes significant overeating brought on by depression and other emotional issues, according to mental health experts.
She has been treated for the condition for more than 20 years. Even though she has health insurance, obtaining coverage for the wide array of treatments has been problematic. Her plans would cover some treatments for depression, but not many other services, such as nutritional counseling with dietitians. At one point, she paid up to $200 a week to meet with a dietitian. This back and forth between coverage and her expensive out-of-pocket costs led to gaps in her treatment.
"It took me a long time to get to anything that even looked like recovery," Turner said.
According to the Eating Disorders Coalition, a lobbying and advocacy group based in Washington, D.C., 14 million people are affected with anorexia, bulimia and binge eating disorder. And for many of these patients, getting a full range of insurance coverage can be difficult. Mental health coverage is often less generous than coverage for physical ills. In addition, helping eating disorder patients is complicated because it involves medical care, mental health services and nutritional therapy, requiring a team of specialists – often a primary care doctor, a therapist, a psychiatrist and a dietician. Patients argue that insurers don’t adequately cover all those services.
The coalition tried unsuccessfully to get eating disorders included in the "essential health benefits" the health overhaul law requires insurers to provide beginning in 2014. "Exclusion of eating disorders is all too common on the part of insurers seeking to limit interventions deemed non-essential," the group wrote to federal officials in a in a January letter. "Despite being biologically based mental illnesses with potentially severe physical health ramifications, including death, eating disorders are all too often found on lists of benefit exclusions."
The group noted that a survey of more than 100 eating disorder specialists found that “96.7% believe their patients with anorexia nervosa are put in life threatening situations” because treatments often are cut short when coverage is denied.
But insurers say that experts have not identified clear protocols for treatment. They note that there is little research on how best to treat the mental and the physical aspects of an eating disorder.
"Any eating disorder is a complex condition," said Diane Robertson, director of the ECRI Institute, a nonprofit organization in Plymouth Meeting, Pa., that conducts research for insurance companies, hospitals and other health care groups.
"[Eating disorders researchers] haven't done a good job in doing outcomes research and finding what combination of treatments work."
Susan Pisano, a spokeswoman for America’s Health Insurance Plans, the industry trade association based in Washington, D.C., says that insurance companies are not hesitant to cover the behavioral and physical treatments for other chronic conditions such as diabetes.
"For diabetes you have the physical aspects that are treated and then you have behavioral issues addressed as well," she said, citing exercise and courses on better nutrition as examples. "But for eating disorders, there’s a lack of evidence for what works and what doesn't work."
To be sure, such disputes are not limited to eating disorders. With rising health care bills, insurers have demanded more rigorous evidence of the effectiveness of many treatments and pushed patients to cover a greater share of their medical costs across the board. Patients, in turn, have mounted consumer campaigns to pressure insurers and even turned to lawmakers and regulators to force insurers to cover a variety of diagnosis. For instance, strong parent advocacy efforts led 31 states to mandate coverage for autism, despite insurers’ concerns about the cost.
Mark Chavez, an associate director at the National Institute of Mental Health’s Research Training and Career Development Program, said there is no silver bullet when it comes to the treatment of eating disorders.
"I don't think it is accurate to talk about treatment for eating disorders as if there is a single eating disorders (there isn't), or a single treatment for the different eating disorders," he wrote in an e-mail.
On its website, the institute says "specific treatments" for chronic cases of the diseases "have not yet been identified." Treatment, "often tailored to individual needs," can include antidepressants, group counseling sessions, individual therapy, consultations with dietitians to help reeducate patients on hunger, nutrition and satiety, the institute says. In extreme circumstances, patients are hospitalized; some may have to be fed through a tube.
Those hospitalizations can include care for electrolyte depletion, irregular heartbeats and over hydration caused when patients consume too much liquid to try to hide their weight loss. Some patients are also referred to a residential facility for mental health care.
Insurance companies often limit the amount of hospital coverage, because it is costly and they say the length of stay is unpredictable.
Angela Woods runs the department that deals with insurance authorizations for Insights Behavioral Health Center in Chicago, Ill., which treats patients with eating disorders and other mental health issues. Insurance companies "are more willing to authorize treatment for mood disorders [such as depression and anxiety] than they do for most eating disorders," she said. "And they also will generally authorize for a longer period of time for the mood disorder."
One of Insights’ patients is Melissa Rothman, a 37-year-old fourth-grade teacher from Evanston, Ill. She sees a dietitian and attends group therapy sessions to treat her binge eating disorder. She said her cravings for high caloric, salty "trigger" foods are slowly subsiding. Her insurance, however, covers only half of the cost of her treatment and limits her to seven visits to Insights before the plan requests a progress review. She ends up paying about $75 out of pocket per visit, so she reduced the amount of times she sees her therapist.
"I’d hit a Thursday session where I was supposed to go in, but I didn’t know if I was covered by my insurance," she said.
Ilyse Simon, a registered dietitian in Kingston, N.Y., who mainly works with eating disorder patients, said insurance coverage for her services is spotty. Part of the problem, she said, is there’s a stigma associated with the condition.
"Anything that revolves around eating or lack of eating -- there is a sense of personal responsibility," said Turner, who has been in recovery from bingeing for the last seven years. "People think: 'Just tell her to eat,' or 'Tell her to stop eating,' or 'go on a diet,' they don’t realize that this is a serious mental health issue."