When she was 5 years old, Chevese Turner had her first episode of binge eating. Turner, now 44, recalls sneaking a box of ice cream cones from the kitchen and eating as many as she could, alone in her room.

This kind of behavior continued over the years, leaving her feeling shameful and guilty.

“I realized that food was the one thing I could have for myself, and I could sort of escape,” said Turner, who lives in Annapolis. But “over time it became a way for me to disassociate from my problems or whatever I was trying to avoid.”

Binge-eating disorder is a condition that includes significant overeating brought on by depression or other emotional issues, according to mental health experts. Researchers estimate that about 3 percent of the nearly 14 million people with eating disorders are binge eaters. Other eating disorders include anorexia and bulimia.

For many of those who seek treatment for these disorders, getting a full range of insurance coverage can be difficult.

Chevese Turner speaks at the Timberline Knolls Binge Eating Disorder Workshop at the Bethesda Marriott on Saturday, Sept. 22. 2012 in Bethesda, Md. Chevese Turner says insurance coverage for her eating disorder has been spotty. (Larry French/AP IMAGES FOR KAISER FAMILY FOUNDATION)

Mental health coverage, especially in individual plans, is often less generous than coverage for physical ills. (The federal mental health parity law does not apply to individual insurance policies and does not require treatment for specific disorders.)

In addition, treatment of eating disorders is complicated because it often 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 dietitian. Patients argue that insurers don’t adequately cover all those services, although estimates of how many patients receive coverage vary.

Turner, who has received treatment for binge-eating disorder for more than 20 years, says that sometimes her plans have covered treatments for depression but not many other services, such as nutritional counseling. At one point, she says, she paid up to $200 a week to meet with a dietitian. This back-and-forth between coverage and 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.

The Eating Disorders Coalition tried unsuccessfully to get treatments for eating disorders included in the “essential health benefits” that insurance plans are required to provide, beginning in 2014, in the insurance marketplaces, or exchanges, being set up under the Affordable Care Act.

“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 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.

Life-threatening situations

The group noted that a survey of more than 100 eating disorder specialists found that “96.7 percent 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 that conducts research for insurers and hospitals.

Eating-disorders researchers “haven’t done a good job in doing outcomes research and finding what combination of treatments work,” according to Robertson.

Susan Pisano, a spokeswoman for America’s Health Insurance Plans, an industry trade association, says that insurers are not hesitant to cover the behavioral and physical treatments for other chronic conditions.

“For diabetes,” she said, “you have the physical aspects that are treated and then you have behavioral issues addressed as well” via exercise and courses on better nutrition, for example. “But for eating disorders, there’s a lack of evidence for what works and what doesn’t work.”

Mark Chavez, program chief for the Eating Disorders Research Program at the National Institute of Mental Health, said there is no silver bullet for treating eating disorders.

On its Web site, the institute says “specific treatments” for chronic eating disorders “have not yet been identified.” Treatment, “often tailored to individual needs,” can include antidepressants, group counseling sessions, individual therapy and 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 heartbeat 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, who oversees insurance authorizations for Insights Behavioral Health Centers, a Chicago-based firm that treats patients with eating disorders and other mental health issues, said insurance companies “are more willing to authorize treatment for mood disorders” such as depression and anxiety “than they do for most eating disorders.” “And they also will generally authorize for a longer period of time for the mood disorder,” she added.

Melissa Rothman, a 37-year-old fourth-grade teacher from Evanston, Ill., sees a dietitian and attends group therapy sessions at Insights to treat her binge eating. She said her cravings for high-calorie, 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 number 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 that there’s a stigma associated with the condition.

“[With] 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 past 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.”

Kaiser Health News is an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente.