The business day was ticking away as Sarah Wilcher waited on the phone.
She was an hour into a desperate protest of an insurance decision about her seriously ill daughter, Piper. By around 5:10 p.m., she realized everybody was gone.
“They just left me on hold,” Wilcher recalled recently of that day four years ago.
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Piper’s treatment team – the one assembled by her insurer, Blue Cross and Blue Shield of Kansas City, and its behavioral health provider, New Directions Behavioral Health – had urged the family to get the malnourished young woman into an inpatient program for help with her anorexia and bulimia.
Piper had seemed so near death that a therapist told Wilcher she feared each end-of-session goodbye would be their last.
But after only six days in what was supposed to be a stay of at least nine months, Wilcher says, the team that had recommended the treatment told her that insurance was no longer going to cover the $1,500 per day cost.
Wilcher was back on the phone the next morning trying to get the decision reversed. The insurer’s continued stonewalling left her infuriated.
So, she says, “I just did a little Erin Brokovich thing, and I just made a sign, and two of my friends joined me.” The sign read, “My daughter is dying underneath Blue Cross and Blue Shield’s bottom line.”
She headed for Blue Cross’ headquarters near downtown Kansas City, Mo. On the second day of the picket, joined by supporters, Wilcher says some Blue Cross executives agreed to talk with her inside the building.
Wilcher got three months of treatment for her daughter. She says it was a near daily battle with the insurance company to let her stay that long.
Piper relapsed almost immediately after she was discharged in January 2011. It would take another round of residential treatment before she started to recover that summer.
Eating disorder experts say Wilcher’s experience with Blue Cross and Piper’s resistance to treatment typify the struggles of many families caught up in the struggle with the disease.
In survey results released last year, the National Eating Disorder Association (NEDA) reported that respondents cited the closely linked issues of treatment costs and insurance limitations as the biggest barriers to treatment.
One of the association’s top priorities is to encourage the insurance industry to cover more early intervention efforts, such as screenings, says Claire Mysko, NEDA’s program director.
As with other diseases, she says, catching and treating an eating disorder early is more effective and less costly than addressing it after the condition has worsened.
Wilcher agrees, likening the current treatment protocol for eating disorders to sending an early-stage cancer patient away and telling them not to return until it has spread throughout the body.
Mysko says NEDA is also urging educators to be mindful of eating disorders as they combat childhood obesity.
“We are hearing a lot from parents about how this fear of (obesity) is actually stoking more anxiety about weight,” she says. “It can be very triggering for some kids.”
That eating disorders can prove intractable and require multiple rounds of therapy is something even representatives of the companies Sarah battled agreed with.
“I wish you could say there is some sort of automatic levers to pull,” says Steven Sehr, medical director for New Directions in Kansas City. “It takes a lot of work, and sometimes you have to do it two or three times before it sticks.”
Yet he and Dr. Gregg Laiben, medical director of Blue Cross and Blue Shield of Kansas City, are insistent that the companies keep patients in the highest level of care for as long as they need it before stepping them down to less intensive settings.
Sehr says New Directions does not wait for someone to fail before ratcheting up their care. Step therapy, he says, has been outmoded for at least five years.
In fact, he says, New Directions staff works with medical providers to establish certain triggers – such as excessive weight loss – that will intensify treatment before a patient becomes seriously ill.
Sehr says he understands how family members might misperceive efforts to get their loved ones well, but he says it serves no one to coddle them. That, he says, breeds dependence on others to help them eat and delays recovery.
And, Laiben says, pushing eating disorder sufferers into inpatient settings is out of step with a medical system that is performing more and more procedures on an outpatient basis. Moreover, he says, eating disorders are no different from any other disease in terms of treating different levels of severity.
“Not everybody goes straight to heart surgery,” Laiben says, “and not everybody goes straight to inpatient for an eating disorder.”