Lynn Grefe, the CEO of the National Eating Disorders Association, said eating disorders are one of the leading causes of death among young people.
According to the association, 10 percent of people with anorexia nervosa die as a result of complications from the illness. Still, victims struggle for adequate insurance coverage.
"Everything is wrong with this situation," Grefe said. "I mean, you have young people. They're usually very young women, some men, who are just fighting for their lives."
Dr. Tom Insel, director of the National Institute of Mental Health, agrees that eating disorders have dangerous medical consequences.
"In the case of anorexia nervosa, you've got an illness with very severe disability [that] frequently ends up with a long-term hospitalization and high mortality" Insel said. "So for women between the ages of 15 and 24, there's about a 12-fold increase in mortality."
"Good Morning America" talked to the medical director of the Gomez's insurer, Dr. John Bradley.
He acknowledged that while the insurance company won't pay for the treatment of a child like Emily Gomez, it would cover complications that result from an eating disorder, such as a heart condition. He said that policy "absolutely" makes sense.
"This is true for depression, if someone attempts to commit suicide and they end up in the hospital ... we cover that," Bradley said.
When asked if he believes the coverage for eating disorders is inadequate, Bradley said, "I think the coverage of a lot of conditions is inadequate."
"The financial situation that this family finds themselves in is in no small part due to the cost of the care that was delivered," he said.
Emily Gomez is back home now. Her family just submitted a new $20,000 claim for her recent stay at Timberline Knolls Treatment Center, which was also denied. So to pay for Emily's treatment, her family had to do something drastic.
"Well it's just really hard when you have to cash your child's college fund in because you can't get your insurance to help you," Leigh Gomez said.
The Gomez family has complained to the North Carolina Department of Insurance, saying its insurer failed to tell the family about treatment options for Emily when they were most needed. The Gomezes are now considering a lawsuit against their insurer for negligence, but Blue Cross Blue Shield of North Carolina says they handled the Gomez's claims properly and did in fact tell the family about their treatment options.
People suffering from eating disorders have won major settlements against their health insurers in court, after arguing in class action lawsuits that the disease is biologically based and that treatment should be adequately covered.
Forty-eight states have some form of parity laws, which force insurers to cover mental health disorders the same way they cover physical disorders, but only 25 of the states have laws that apply specifically to eating disorders, and the state parity laws don't affect all insurance plans, including the Gomez's.
However, a new bill recently introduced in the House of Representatives, called the FREED Act (Federal Response to End Eating Disorders), if it became law, would require insurers offering group health insurance to specifically cover eating disorders.