Katie Bird had been battling an eating disorder ever since she started taking diet pills at age 13.
When she had a child of her own, she knew she couldn’t keep passing out from lack of calories; she needed to win the fight. But she didn’t realize she’d also need to battle her insurance company to do it.
By virtue of living in Minnesota, Bird was actually luckier than many with eating disorders: Patients come from all over the Midwest to take advantage of Minnesota’s clinics, therapy and residential programs. The Emily Program, which opened here in 1993, has grown into one of the largest eating-disorder treatment facilities in the country; founder Dr. Dirk Miller recently won two awards for his work from the University of Minnesota.
Minnesota Sens. Amy Klobuchar and Al Franken are both sponsors of the Federal Response to Eliminate Eating Disorders Act (S. 481, called the FREED Act), a bill designed to increase funding for research, treatment, education and prevention of eating disorders. And Rep. Keith Ellison is a sponsor of the House version, HR 1448.
Minnesota is even referred to as the “Disneyland” of treatment because it’s perceived to be easier to get insurance coverage here. Much of that can be credited to former Minnesota Attorney General Mike Hatch, who sued Blue Cross and won an $8.2 million settlement in 2001.
Hatch contended in the suit that the company denied adequate treatment to eating-disorder patients, including 21-year-old Anna Westin, who committed suicide after a long fight with anorexia. (Today marks the 12th anniversary of Anna Westin’s death after a long battle with anorexia, and February is Eating Disorder Awareness month.)
Even here, many lack full coverage
Still, The Emily Program estimates that roughly 10-15 percent of clients get denied full coverage from their insurers, according to spokeswoman Kari Fox.
That’s led to a trend toward more lawsuits, said St. Paul attorney Elizabeth Wrobel, who has worked on over a dozen eating-disorder cases since 2009.
“At the end of the day, the insurance company is only liable for the benefits, the attorney’s fees, and interest,” Wrobel said.”It’s unfortunate, but from my perspective, there’s not a lot of disincentive for insurers to deny claims.”
Many patients who are denied coverage simply stop seeking treatment, Wrobel said, or pay for it themselves and don’t seek reimbursement. Most never get to the point of seeking legal help.
“A lot of people who are denied coverage aren’t necessarily in a place mentally to push back,” she said.
For those who do, Wrobel’s involvement can range from a phone call to the insurance company, which sometimes sparks immediate authorization of treatment, to filing a lawsuit.
Hallie Espel lobbied in Washington, D.C., last fall in large part because she saw so many of her peers going through the double-battle.
“When people are discharged it’s because your insurance company says you’re done, rather than the doctors saying you’re ready,” Espel said. “More often the case than not, these people are not getting the treatment they need.”
Residential treatment often denied
Espel says her stay at the Anna Westin House, a residential house that’s part of the Emily program, was essential to her recovery, but it’s often residential treatment that insurance companies deny. (She herself feels lucky to have had limited insurance issues during her 9-year battle with an eating disorder.)
Few studies have been done on the effectiveness of residential treatment. Psychiatrist Dr. Murray Zucker, western regional medical director for behavioral health at OptumHealth Behavioral Solutions (the new name for United Behavioral Health) said focusing on the outcome of patient care is essential.
“We hear this a lot from parents: We’re all tired of going to facilities where our children are not getting better,” he said. “Can’t you tell us what is the best?”
Before Zucker joined UBH 11 years ago, he taught at UCLA. Part of his job is to help OptumHealth partner with academics and experts internationally to determine best practices for patients.
Like most of her peers in treatment, Bird spent her days at outpatient treatment programs, half focused on recovery, half wondering if the next knock on the door would be a program administrator with news that her insurance company was refusing coverage, and that she’d need to leave within the hour.
When her husband found out his company was switching to a new (and, supposedly more inclusive) coverage through UBH, she was elated. But soon, she was back to the revolving door of coverage, with her treatment team spending hours on the phone with the insurance company.
“It was frustrating and shocking and scary and sad to see the revolving door that treatment is,” Bird said. “People would be approved [by insurance companies] for three days, and then the insurance would reevaluate. That was the case all the time. You’d get an hour’s notice and you’d have to leave. It was really disruptive to everyone’s treatment, because you all kind of form a treatment family, and if one is leaving, it makes it hard because you don’t know how deep you can go before you’re going to get kicked out.”
Finally, after 10-12 years in outpatient therapy, Bird and her husband knew their options were running out.
‘Then I’d get home …’
“What was happening [in the outpatient program] is I would go and do really great, or throw food away or hide it, or figure out ways to miss ingesting calories,” she said. “Then I’d get home and work out a ton and not eat at home. That was where I was at. I’d been suffering for so long; there was too much underlying — you can’t get to it in eight hours a day, especially when you’re in treatment and dealing with your insurance.”
Bird developed an irregular heart beat; when she went to bed at night, she feared she might not wake up.
“I didn’t want to die,” Bird said. “At the time, though, it seemed that maybe my daughter and husband would be OK without me. Not that they would be better off, just that they would be OK. This was an extremely convoluted thought brought on by my eating disorder. I was not suicidal; I just was so exhausted from fighting with [the eating disorder] every day and I didn’t see how I was going to get better without residential treatment. I didn’t want to leave [my daughter] for four months … but it was four months versus the rest of my life.”
They decided she would check into the Anna Westin House, even though they knew UBH would deny her claims. Afterward, they would sue. The case settled out of court in July 2011, and Bird and attorney Elizabeth Wrobel say they are very pleased with the outcome.
“For me, not having insurance involved in that decision was the best,” Bird said.
Bird said she is now on the road to full recovery, fully present to the needs of her 4-year-old, and due to have her second child in July. She still checks in with her dietitian and therapist on a regular basis.
Although UBH said it couldn’t pinpoint numbers, Zucker said lawsuits are rare. Also, he said, employers may exclude certain levels of insurance coverage that may affect eating-disorder treatment.
A national struggle
About 11 million Americans suffer from eating disorders. About one in 10 get the treatment they need, according to the book “Body Wars: Making Peace with Women’s Bodies.”
Espel witnessed that more than once: One of her friends died after battling an eating disorder and not getting full treatment when her insurance company stopped paying. If she had had access to a higher level of treatment, Espel believes she might still be alive.
“It’s never a guarantee, but she never had the chance to see if she could get [to full recovery],” Espel said. “Only a small percentage of people who have eating disorders need residential treatment, but when they do, they absolutely need it. It was the only way I was actually going to recover.”
In a recent informal survey of 100 patients with insurance, less than half had coverage for eating-disorder treatment, and of the half who did, the coverage was limited, said Kathleen MacDonald, education and prevention coordinator of the F.R.E.E.D. Foundation.
Since 2008, federal parity laws started dictating that mental and behavioral disorders must be covered at the same level as physical ailments. That still leaves much open to interpretation, however. In August 2011, a landmark case in California determined that state insurance companies must pay for residential treatment for eating disorders and other serious mental illnesses. Eating disorder advocates are hoping that others will follow suit.
But many say that until the FREED act passes, the legal fight will continue.
Kitty Westin, Anna’s mother, is familiar with the ongoing battle. She’s been fighting in it since Anna died 12 years ago. She believes her daughter would be alive if she’d had access to a residential program like the one that now bears her name.
“Are there some days I want to quit?” she said. “Absolutely, but I feel really good about where we’ve come from and about where we’re going.”
“I consider my clients to be some of the most vulnerable people in the community, but once they’re recovered they’re some of the brightest and most capable people I’ve ever known,” she said.
Espel, for example, is going to school to be an eating-disorder clinician and researcher.
“There’s a lot of debate in the community about whether anyone is ever fully recovered, but I essentially say I’m fully recovered from an eating disorder — which is a special thing,” Espel said. “I have the gift of having been able to have gotten through it.”