MacDonald finds this frustrating. She got an email from a mom whose daughter reached 60 percent of her ideal body weight and the insurance company said she was fit to be released from care.

"It makes no sense," MacDonald says. "We wouldn't do that to people with cancer, right? We wouldn't say, 'Well your tumor is still present, but it's down to 90 percent instead of 100 percent so good luck to you.' Yet every single day insurance companies use their 'medical necessity' criteria to dole out treatment and make and life and death decisions for people with eating disorders."

Grefe knows of patients who have to go home and lose more weight and get sicker in order to get treatment. She compares it to saying, "You only fractured your leg, come back when it's really broken."

Changing the health insurance system

Federal law tried to address these issues. The Wellstone-Domenici Mental Health Parity Act of 2010 ensured that employers with 50 or more employees, and whose group health coverage included mental illness, had to include coverage for treatment of eating disorders. But experts say the law lacks specifics and leaves it up to each state and insurer to provide the coverage or lack of it as they see fit.

In order to get health insurance coverage for eating disorder treatment or extended benefits on a plan that offers some coverage, patients should:
  • Ask the insurer to 'flex the inpatient benefit.' If you have outpatient benefits but no residential treatment coverage, the insurance company may let you swap coverage to help pay for a residential facility.
  • Appeal to the medical director of the insurer if you are denied.
  • If you have an employee health plan, speak to your employer, union, or human resources department. Since the employer pays for all or part of your coverage, it can pressure the insurer to provide the needed service.
  • Have your physician or specialist write a letter documenting the level of care needed.
  • If services are clearly excluded from your policy, a letter to the company's medical director documenting the need for treatment and risks of not receiving it may help the company re-examine its policy.
  • Consider self-pay while you pursue reimbursement options.
  • Write to the state insurance department or the Department of Labor, which regulates self-insured plans.
  • Speak to an attorney to determine if you have a legal case.

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