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Eating-disorder patients fight double battle: their disorder, and insurance firms

anorexia drawing
CC/Flickr/Abominatron

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.

Bird’s story

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.

Fighting still

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.”

Wrobel agrees.

“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.”

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Comments (6)

Most large employers in MN

Most large employers in MN are self insured meaning they hire an outside company (an insurance company or third party administrator (TPA) to adminster their benefits for them. In these cases, the employer decides what they want covered. The insurance company or TPA then does as directed.

No, not everyone is covered by self-insured plan, but the insurance company is not always to blame either.

ED and Insurance

I appreciate this article. Even though I was a resident of Texas when my two daughters were struggling with ED and addiction respectively, we experienced so much of the same issues as the individuals mentioned in the article. We had to scrape to get the finances for the up front funding to send our oldest daughter to treatment, fight with the insurance carrier to try and get SOME coverage and fight with the facility not to toss her out pending payments. To cover the expenses insurance wouldn't, we spent almost our entire retirement, our daughter's college fund, borrowed money from my mother and took out a second mortgage on our house. In the end, it wasn't enough. We were trying to find a way to afford treatment for her (we had even contacted the show Intervention) when she passed away in June 2009. My youngest daughter, in the meantime, was able to overcome her issues because her addiction issues were easier to get coverage for, and the treatment options were less expensive. When you are trying desperately to hold down a job so you can have the money you need for doctors, therapists, nutritionists, and so on, understand a complicated disease like ED, support both your children, keep a marriage together, and all the other stuff life requires, how in the world can you or should you have to fight the insurance carrier?!

The Family Based Method works

I think there is good data on the family based method of treatment. Having followed this issue for some time, and not necessarily referring to any of the particular centers mentioned here, whose approaches I am not familiar with and who all surely have the best interest of their patients in mind, in general, oftentimes the problem with eating disorders residential treatment is that it takes the kitchen sink approach, combining individual therapy with group therapy with art therapy with equine therapy with nutritional counseling with CBT and psychiatry and self esteem and family based therapy (or some facsimile of the "family based method") when these differing approaches can contradict and then undermine each other. Also, the residential centers don't want to give up certain ideology based approaches to this illness, intractable ideas that it is about, say "control," for instance, or media messages about thinness or body image, when, while those notions may or may not be true, they ultimately don't assist the primary objective, which is to make the patients rapidly increase their caloric intake. You can talk to a patient and develop her insight for months and months about her issues with control or body image or family conflict, billing the insurers the entire time, but if the patient isn't being made accountable to calories -- putting "healthy eating" nutritional concerns to the wayside, during this process incidentally -- through meal monitoring and activity monitoring, and then afterward each meal as well, to make she she doesn't purge, she is going to remain under the influence of cognitive distortions caused by starvation. Calories first, therapy second. Insurers would probably agree to pay more readily if the treatment community adopted a consistent adherence to treatments that work and dropped the methods that either undermine the treatment or seek only to market a pleasant seeming facility to patients. A patient really shouldn't find an eating disorder treatment center as a spa like, desirable place to be, if that center is doing its job right. The illness makes the patient resist calories, the treatment center does the opposite.

Only in America

Only in America are insurers allowed to decide what illnesses they will cover and which they will not, and even when ostensibly covered, deny payment because the patient had a similar illness twenty years ago or some other lame excuse.

We don't choose our illnesses or weaknesses, they just happen. And no family should have to bankrupt itself to pay the full cost of care for any member whether or not they are insured.

Insurers know pretty well exactly what price premiums have to be in order to pay for every common and exotic treatment needed by their customers, and they charge that much or more. To then deny payment is to wrongly accumulate profits they are not entitled to.

Glad to See This Issue Getting Attention!

I'm so glad that MinnPost is covering this. I'd like to add that, while Kari Fox said that 10-15% of people who try to get treatment at The Emily Program do not have adequate insurance, we believe that the actual percentage of people without adequate coverage for ED treatment is far higher-- those who know they have little or no insurance coverage are not likely to approach treatment centers at all (at least according to information we've gathered through informal surveys of people identifying themselves as eating-disordered).
As a Minnesota resident battling a serious eating disorder in 2001, I was told that I needed intensive treatment or I would die, yet my insurance company refused to pay for more than 6 outpatient therapy visits per year. My full story is available online, here: http://joyproject.org/571/joys-recovery/
Incidentally, there's another story here that isn't being told: The treatment center where I initially sought treatment (NOT The Emily Program) has developed a reputation for opting to treat only the patients who have full insurance coverage or coverage through various specific government plans related to disability status. Others are often told there is "no room" for them, or that there is nothing the program can do to support someone in dealing with their insurance company. I would like to see some investigations into which treatment centers seek to have a much-higher-than-usual percentage of patients placed under a stay of commitment to their program-- specifically people with access to insurance coverage that is known to pay more. A different treatment program (not in Minnesota) has been accused of 'patient-shopping'-- specifically seeking out those who are covered under Medicaid funding: http://archive.chicagobreakingnews.com/2010/07/men-linked-to-scam-have-n.... While I do not believe this is, in any way, the norm, I do think that those centers who engage in these practices are doing a great disservice to the treatment community as a whole, and the patients who are being turned away.

My comment

First of all, I am very, very glad to see this being addressed in the media. We may be the 'mecca' for mental health treatment, but I can tell you from personal experience, that getting into and staying in residential treatment long enough to effect change is all but impossible here.
I have to answer a few comments I've read.
Paul Scott: For one, family based treatment may be a treatment of choice IF you have a functioning family. Or for that matter, IF you have a family. Second, Yes, nutrition is essential to recovery and that is why people go into residential treatment. However, contrary to your statement above, not every patient who goes into residential treatment needs to gain weight. This is a common misconception, and one that is keeping people out of residential treatment centers. Someone can be "normal" weight and be next to death due to an eating disorder.
Joy Nollenberg, I've heard about the whole issue of taking only people who's insurance will cover them or who are on a stay of commitment. What can we do about that?
I am one of those people who are covered under a state insurance plan and supposedly I have unlimited days of inpatient stay for the first time in my life. I went into the Anna Westin House expecting to stay for two to three months, and found out hours after admission that I was given ten days. And when the psychiatrist at the insurer was questioned about only allowing ten days his answer was that my bmi was too high to stay there any longer than that. Never mind my physical or mental state at the time. His only concern was an arbitrary number that to him meant that I was 'fine.' I know that I am one of those people who need to sue the insurance company, but honestly, in my current mental state, as was stated above, I don't have the energy to do that. What did my stay give me? Certainly no spa-like treatment that was suggested above. It gave me nutrition in a safe environment. A chance to eat what I was prescribed to eat all day every day for the first time in my life. Would I like the opportunity to continue my treatment? yes. Will I ever get it? I doubt it. And I live in the 'mecca' of treatment opportunities. It's very discouraging.