By Jesse Marx
By Chris Parker
By Jake Rossen
By Jesse Marx
By Michelle LeBow
By Alleen Brown
By Maggie LaMaack
By CP Staff
Katie Bird thumbs through a stack of opened envelopes, at least a hundred deep, on the coffee table in her lawyer's office.
"These weren't even all my denials," she explains. "Just the ones we saved."
Behind her are three accordion folders overflowing with more paper, the remains of two years of war with her insurance company.
The files chronicle the nine appeals where she begged her provider to cover treatment for her eating disorder. Among the insurance reviewer's reasons for denying care: "There are also religious groups who fast and that is not psychopathology."
"Insurance companies create the rules and change them to suit their needs," says Bird's attorney, Elizabeth Wrobel. "Most patients simply give up and believe what the insurance company has told them, which is that they are not really sick or do not qualify for the benefits for which they have paid."
Bird's problems began at age seven, when she first thought she was fat. By age 13, her mother caught her with diet pills and sent her to the first of many treatment facilities. For the next 18 years, Bird cycled in and out of therapy.
In 2007, Bird had a daughter. Two years later, she was hospitalized for three weeks. She was 108 pounds and needed cardiac care. She knew she had to make a change.
"I was still working out in the hospital," Bird remembers. "I was going to bed at night afraid I wasn't going to wake up, and I didn't want my daughter to grow up thinking that was okay."
When Bird left the hospital, she entered treatment at the Emily Program. There, her team recommended residential care in order to break a lifetime of bad habits: 24-hour supervision onsite at the program. The Emily Program was a "preferred provider" in Bird's insurance company's network, and all four of her doctors agreed that the prescription was necessary based on how Bird's condition fit into the American Psychiatric Association's treatment guidelines.
But Bird's insurance company, United Behavioral Health — the behavioral care arm of Minnetonka-based giant United Health — wouldn't cover it.
Over the course of those nine appeals, UBH pulled out all the stops: Bird wasn't trying hard enough to get better, read one denial letter, and "needs to be taking responsibility for her own behavior." In another, Bird wasn't "actively psychotic, suicidal or homicidal," and so didn't need such a high level of care. Bird didn't meet UBH's own guidelines for care, went a third, though the company wouldn't clarify what those guidelines were.
"I find it so striking how differently my clients are treated in comparison to patients who require significant medical treatment," says Wrobel. "Imagine telling someone with breast cancer to try harder."
There's a federal law, the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act, that is supposed to do exactly what Wrobel describes: make insurance companies cover treatment for mental illness and addictions "on par" with how they cover physical ailments, an idea known as mental health parity.
It should have helped Bird before she ever landed in court. But since Congress passed the act in 2008, insurance companies haven't had to listen to it.
"I'm frustrated," says Sen. Al Franken, the latest Minnesotan to lead the parity charge. "The real problem is that the interim regulations are unenforceable. We've made hundreds of phone calls, written letters, but on the question of whether or not the intent of the law has been carried out, the answer is comme ci comme ca." Kind of.
On January 16, President Barack Obama signed 23 executive orders on gun violence. Four of them talked about mental health, and one of them pledged to finalize what the rules would be for the Wellstone Act.
When Congress first passed the act, the legislation was a landmark 12 years in the making.
"My dad always called it a civil rights bill," says Paul Wellstone's son, Dave. "It was a big deal."
The bill would have given 113 million Americans increased access to mental health care, according to SAMHSA, the U.S. government's substance abuse and mental health branch. In Minnesota, it would have affected about 40 percent of those with health insurance. That's nearly two million people.
And those big jumps in coverage would have come at minimal cost, many studies indicated. Reports from both the Surgeon General and the U.S. Department of Health and Human Services showed that parity laws would result in a less than 1 percent increase in overall health care costs. In 1999, when President Clinton ordered parity for federal employees' health care plans, the switch actually saved the government money.
The Wellstone law was passed with all this in mind, putting in place temporary measures that were supposed to last until 2010, giving regulators time to put together a final set of rules. But then those rules never materialized.
"People don't realize that until a law has a rule, it's not worth the paper it's printed on," says Jim Ramstad, who championed the bill in the U.S. House during his nine terms representing Minnesota's third congressional district.
Instead, the temporary guidelines have meant that insurance companies can interpret the law as they see fit.
"There's no consistency in terms of what the law is asking for, and so it's been up to the insurance company," says Nell Hurley, head of the Minnesota Recovery Connection.
As the companies are writing their own rules, they've had little oversight or enforcement.
"Everyone's heard the federal regulator basically saying, 'We know there are some big loopholes, and so don't worry, [health] plans, we're not going to enforce the gray areas,'" explains Carol McDaid, a Washington, D.C., lobbyist who works closely with both Ramstad and Dave Wellstone. "It has had a chilling effect on the implementation and definitely on the enforcement."
Now, following President Obama's call to finalize regulations, Ramstad is hopeful that the law he sponsored will finally make the changes it was designed to do.
"I've never heard of a major bill taking this long, but we're getting closer," he says. "I've got page seven of the president's plan memorized. We can see the finish line."
Others worry that it's far from a done deal. Two of Obama's other mental health orders have strict deadlines: He directed regulators to decide on final rules for the Affordable Care Act by February. But for the Wellstone Act, Obama hasn't yet ordered a date.
"Sandy Hook has put a new focus on mental health," says Franken. "But I think we've been a little frustrated that they've said, 'Okay, we're committed,' but they haven't set a timeline. It's very important that we get this done."
In 1998, second-term Sen. Paul Wellstone went to an event for the Woodley House in D.C., which offers housing and support for people with mental illness. His older brother, Stephen, had stayed there decades earlier, during a time when he had to be institutionalized for his own mental illness.
Wellstone was scheduled to speak, along with distinguished panelists like then-Vice President Al Gore. Ellen Gerrity, Wellstone's chief staffer for mental health parity reform, was standing nearby when her boss took the stage.
"He was talking about how to get parity done and what it would have meant to his family to have had good care," Gerrity remembers. "I looked back at the audience and these hundreds of people were all looking up at him. It was family members trying to get care; it was providers who had worked so long without enough pay. I could see the inspiration they were receiving from him. Many times when I saw him speaking to audiences, many times that passion carried over."
Much of that passion stemmed from Wellstone's own childhood experiences with mental health services, seeing Stephen after he was diagnosed with a serious illness that was likely schizophrenia and required him to be institutionalized.
"My dad visited that hospital several times," says Dave Wellstone. "He committed to himself then that if he was ever in a position to make a difference he would."
In 1990, when Minnesotans elected Wellstone to the U.S. Senate, he got his chance. He began work on a mental health parity bill and in 1996 got the first part passed, a law that made it harder for insurance companies to put annual or lifetime caps on behavioral treatments.
Jim Ramstad recalls the first time Wellstone called him about parity.
"I remember him saying, 'Will you help me?' and I said, 'Help you what?'" Ramstad says. "He asked, 'Why should people with diseases of the brain be forced to pay higher deductibles and co-payments? Why should they face limited treatment stays arbitrarily imposed by,' — as he put it — 'some green-eyed insurance companies?'"
Ramstad, himself a recovering alcoholic, came on board the cause.
"We teamed up in 1996 on what became a 12-year odyssey to pass the parity bill," Ramstad recalls.
Soon after he signed up, Ramstad says, his phone started ringing off the hook.
"I got boxes of letters telling horror stories of denial," Ramstad says. "In 1996 the average treatment stay was seven days for chemical addiction. Nobody who is an addict or an alcoholic can get primary treatment in seven days. It just doesn't work that way."
But Wellstone was just getting started.
"He was tireless," remembers Gerrity. "In addition to expanded coverage he wanted to include addiction treatment as well. At the time, it seemed extreme, but he was very, very serious about this. There was never a moment when he wasn't thinking about it."
For the next six years, Wellstone and Ramstad fought hard. They tried different strategies, like Wellstone introducing one version of the bill in the Senate and Ramstad introducing another one in the House.
"Paul and I were talking every day," Ramstad remembers. "He would call me at midnight; I don't think the guy ever slept."
In 1998, they got close to a success, but then, as Ramstad tells it, "the insurance companies came out of the weeds," and at the last minute, lobbied hard enough to get key legislators to change their minds.
In 1999, the duo met with President Clinton. In 2000, they criticized the government for spending $1 billion on drug eradication rather than treatment and education. By 2001, Ramstad introduced another bill in the House, and got over 200 co-sponsors. Momentum started to build, but the bill was ultimately defeated.
Then, in October 2002, Wellstone was traveling to a funeral in Eveleth, Minnesota, when his plane crashed in a forest. The 58-year-old senior senator died, along with his wife, his daughter, and five others.
While his friends and surviving family grieved, they also resolved to take action in his memory. Sen. Edward Kennedy and his son, Rep. Patrick Kennedy, came to Ramstad's office not long after.
"They said, 'We want to get this mental health parity bill done for Paul Wellstone,'" Ramstad remembers.
With new motivation, they kept working, and Dave Wellstone joined the cause.
For the next five years they continued to push for a satisfactory bill. In 2007, Ramstad and Patrick Kennedy toured the country, hosting field hearings to drum up support. By 2008, "it got very dramatic," Ramstad remembers. "The House and the Senate were bickering, and Patrick's dad would call in every day from his sick bed."
But before the bill could come to a vote, Congress adjourned.
"I was very dispirited," Ramstad remembers. "But there was this recession and we had to pass a bank bill, and I told my staff, 'We can't quit now. They're going to call us back.'"
Sure enough, a few days later, everyone was called back for a special session. The press box at the Senate was packed, Ramstad remembers, with people waiting to see what would happen on the $700 billion financial bailout.
"Then they shocked everyone and called up our bill for action first," Ramstad says. The Senate Majority Leader "added the bank bailout bill as an amendment to the mental health parity bill, and the whole package passed."
Gerrity was there too, along with Dave Wellstone.
"It was a magic moment," she remembers. "When the vote passed all these members were looking up at Dave and smiling and giving the thumbs up."
The House passed the bill two days after, and one day later, President Bush signed it into law. It was six years to the month after Paul Wellstone's death.
The bill was supposed to change everything. Except it didn't.
"Initially, it seemed pretty normal that there would be interim regulations and public commentaries and of course the insurance opposition," says Gerrity. "Then Obama got elected and we thought, 'This is good. We'll get these done.'"
Everyone has a different theory on why regulations for the bill got derailed. One problem is that three federal agencies have their hands on the bill, which makes the process three times as complicated.
Another issue is the Affordable Care Act, a.k.a. Obamacare. The same regulators tasked with implementing and enforcing the Wellstone Act are the ones overseeing the ACA roll-out.
"They've got a ton on their plate, and it's a legacy issue for the president," says Carol McDaid, the D.C. lobbyist. "So parity has fallen to the side."
The ACA itself has a parity provision, and will go a step further than the Wellstone Act in one regard: Mental health is one of the 10 "essential health benefits," which means insurers will have to cover it.
But elsewhere in the ACA is a parity provision that just cross-references the Wellstone Act and its regulations. As McDaid explains it, if regulators don't figure out a final rule on the one, the other won't have sharp enough teeth either.
Regulators ran into a third roadblock when it dawned on them just how complicated these issues are. A U.S. Department of Labor report from January 2012 notes that after the interim rules went out, regulators "realized the complexity of the law and regulations gives rise to many highly technical issues and questions," and that there has been "considerable confusion" about the details.
"It's pretty easy for us to figure out, 'Okay, if you're allowed six physical therapy visits then you get six therapist visits," says Sue Abderholden, the executive director of NAMI-Minnesota. "But one of the biggest issues has been the non-quantifiable limits. If you're allowing nursing home care to recover from knee surgery, would you allow an intensive residential treatment plan?"
The hypotheticals like that are endless. And a fourth major delay came from the insurance companies themselves. United Health provides coverage to more than 70 million people; UBH provides behavorial coverage for one in six insured Americans. But the company has expressed concern over the Wellstone Act.
In written comments submitted on the interim rules in 2010, United Health argued that the regulations are stricter than the law intended, and "will have unintended, negative consequences that will disrupt access to appropriate behavioral health care." The company cites the possibility of higher premiums, increased out-of-pocket costs that serve as a deterrent to care, "and, in some cases, loss of behavioral health coverage altogether."
United Health recommended a longer transition time to comply with the law, no parity for "non-quantitative" treatment (like Bird's residential care), and deductibles for mental health benefits separate from the medical/surgical deductible.
To Wrobel, the lawyer who has represented Bird and more than 20 other clients with similar cases, the company's complaints are "pretty clear," she says. "I think it's perceived as expensive."
Kim, like Katie Bird, bears the scars of her insurance battles in paper. Hers are organized in a thick, white binder. She sighs as she drops the pile on a coffee shop table.
"This is like reliving a nightmare," says Kim, who asked that only her first name be used.
Inside the binder is the arsenal of files Kim built up over a year as she fought her insurance company, HealthPartners, to cover her son's treatment for chronic addiction.
Kim is an accountant; she deals with bureaucracy professionally. But in January 2010, when HealthPartners denied coverage for the second half of her son's 60-day treatment program, Kim found herself in unfamiliar territory.
By that point, her 22-year-old son had been in and out of rehab programs since he was 15. During his senior year of high school, his parents caught him with meth. In 2007 he tried a program at Hazelden. Nothing worked.
This new program seemed to be taking root when HealthPartners said that it would cover only the first 30 days. The second half was not, the company wrote, "medically necessary."
"You've got a child that has been so sick and so close to death, and you finally get them into treatment and they're doing okay, and then all of a sudden the insurance company says, 'We're not going to pay,'" Kim says. "So then as a parent you have a choice."
Kim and her husband decided to pay $12,000 out of pocket to keep their son in treatment. Between that money up front and their steep $10,000 deductible, HealthPartners covered only a tiny fraction of the $24,000 program.
The next month — after her son had completed treatment, entered a halfway house, and begun reconstructing his life — Kim woke up ready to act. She wrote the HealthPartners Board of Directors a letter saying that they should pay her claim, but again got denied.
In the denial, HealthPartners cited the American Society of Addiction Medicine criteria as their standards. But when Kim asked for more information, she got a letter saying that the company didn't have to give her any explanation.
"How am I supposed to prepare an appeal if I don't know what the standards are?" Kim remembers asking.
So she researched the guidelines herself, found the official manual, and called up its editor. He was the first person who could give her directions on how to proceed.
For the next four months, Kim pulled together all of her son's medical records from his five years of treatments, and paired them with the criteria in the ASAM manual. She found that HealthPartners' stated guidebook called for treating addictions like her son's with a program similar to the one he had been in.
When she was done, Kim sent in her nearly book-length packet to HealthPartners for her second appeal. She was denied the same day.
Kim ultimately won, but not before making her case in person at the HealthPartners Board of Appeals. She guesses that, by that point, she had devoted more than 200 hours over seven months to the process.
"Even in a state like Minnesota, which is one of the better states, Kim had to go through a million hoops," explains Nell Hurley of the Minnesota Recovery Connection. "Her son only got the care he needed because she was persistent and very well-equipped."
In a statement to City Pages, HealthPartners noted its support for the Wellstone Act, and cited efforts like its brand-new $36 million, 100-bed mental health facility at Regions Hospital as proof of its commitment.
Kim's son is now two years sober and a mechanical engineering student.
"If I hadn't had the skill, the time, the money to get for my son the treatment he was legally entitled to," Kim says, "I don't think he would be here today. I don't see how other people could do it. I think the insurance company expected it to be confusing and time-consuming enough to make us give up."
After Katie Bird sued UBH, they settled for a sum she can't disclose. But, she says, "I feel like we won."
Bird spent three months living at the Emily Program, treatment that totaled around $157,500 according to court documents. That doesn't include the cost of her two hospitalizations and the Intensive Day Program treatment she was in while fighting with UBH over whether she could enter residential care.
That's a heavy tab. But to Bird's lawyer, some of it could have been avoided by giving Bird the treatment she needed earlier.
"She was spending all of this time on the inappropriate level of care, and she could have spent that time in residential and probably avoided all of it," says Wrobel. "At the end of the day, they're trying to save money but it's probably more costly."
Bird also points to the unquantifiable victories, like the fact that she is now able to be a mom to her two children. "I never, ever, ever thought I would be able to live like I am now," Bird says.
To Dave Wellstone, experiences like hers are the reason to keep fighting.
"Everyone knows someone who is impacted by mental health," he says. "Those are the stories that keep you going. You don't have to look too far."
Opinions vary on when Washington might come out with some final regulations. Ramstad is on the optimistic end of the spectrum and hopes it can be accomplished in the coming weeks. Sue Abderholden hopes for next fall at the latest.
Others, however, are more skeptical.
"The White House has promised 'later this year,'" says Ellen Gerrity. "But everyone knows that later this year can become another year. It's not a comfortable position to not have an exact date."
If regulations aren't approved by October, when the Affordable Care Act begins to take effect, then that will mean at least another year "of people not getting the care they deserve," says Dave Wellstone. "And the care they're entitled to under the law."
Wellstone isn't backing down until he sees President Obama's signature on final regulations.
"There are two schools on this," he told a group of University of Minnesota students at a recent action strategy meeting. "The first is to just let it happen. But I'm in the second, the school of keep pushing hard. It's been four years. We can't really sit around much longer."
Gerrity notes that Paul Wellstone, the man who inspired parity, wouldn't have been surprised at how much work remains to be done.
"Paul always talked about it as similar to civil rights, as a long march," she remembers. "It is a long march. And we're still walking it."