The last five months were a "bobsled ride from hell," Kitty Westin remembers with a pointed clarity that only time can bring.
After four solid years, Kitty and Mark Westin's oldest daughter, Anna, had relapsed. Anorexia was again her battleground.
"One day she was doing well. The next it felt like we were stuck in some kind of bobsled ride from hell," says Kitty. "We were fighting with the insurance company. We were fighting with each other because there was so much stress, anxiety, fear, and anger."
That was 16 years ago this summer.
Anna never rebounded, with mental illness treatment coming too little, too late. The 20-year-old took her own life the following February.
"It was so lonely, so horrific when she died, it's indescribable," Kitty says. "For 15 years, I have been an advocate, fighting fiercely so nobody suffers like Anna or our family has.… I want to save people from the horror of burying a child."
Kitty's conscripted activism for treating diseases of feelings and thought like those of blood and bone started in the Old World of mental health parity.
"Eating disorders were looked at behavior problems or choices or a phase that somebody might go through, and I think insurance companies viewed them like that as well," she says.
Anna was 16 years old when her family learned she was anorexic. Her struggles for solid footing were compounded by her parents' battle with Blue Cross and Blue Shield of Minnesota to get her the treatment she needed.
"When she was critically ill… we wanted to admit her and we were told to take her home until the insurance company was able to review [her case] and would let us know. I was pretty horrified by that, knowing that if I had brought her in and she was in a car accident or had been diagnosed with leukemia, there wouldn't have been a question," says Kitty. "There was always a delay and we got stuck in what I call 'the revolving door.'"
Anna needed several weeks of inpatient care, her doctor said. The insurer would authorize a few days or maybe a week.
"Then they would review [her file] about possible reauthorization," Kitty says. "There were constant reviews. Before we knew it, she'd be discharged into a lower level of care and we'd start all over again."
Even now insurance companies can be guilty of addressing mental illness treatment with a "fail first" approach, according to Kitty. It's the topic of this week's cover story, The broken girl and a mother's war with UnitedHealth.
"Doctors will say a child needs inpatient care," she says, "but the insurance company is saying, 'let's try a lower level of care and if that doesn't work, we'll reconsider.'
"Imagine if your wife had stage three breast cancer — only to have the insurance company say it's only stage three. Let's try this [lower level of] care instead. That wouldn't happen. You wouldn't fail first."
The Anna Westin House, the first residential eating disorders program in Minnesota, opened in 2002.
Passage of the Mental Health Parity and Addiction Equity Act of 2008 requires group health plans and insurers to provide treatment for mental illness or substance use just like they would for any medical condition.
A month ago, The Anna Westin Act was introduced in the U.S. Senate. The proposed law is designed to combat eating disorders through education and improved insurance coverage. It also seeks to clarify earlier mental health laws requiring carriers to cover residential treatment for eating disorders.
"We've seen some positive change," says Kitty. "… Now, we're still having problems and mental health parity is not being enforced the way I think it should be."
Westin calls out insurers for perpetuating the problem: "I don't think insurance companies are inherently evil. I think often times they just don't get it. They're hesitant to cover what they think is expensive care. My job is help them get it."
That means delivering the message to the likes of Minnesota nonprofit insurers like Medica and Health Partners, as well as UnitedHealth Group, the state's largest company and one of the nation's biggest insurers.
"It's important to make money, but it's more important to give the service people are paying for," says Kitty. "When I pay my [premium], I would expect that I or somebody in my family would get the coverage I've been paying for years. That's more important than having a bazillion dollars in the bank or making your stockholders happy."
At the end of next month, Kitty's efforts will shift to the eastern time zone. She'll walk in the March Against Eating Disorders in Washington, D.C. on October 27.
"There are families that are scared, who have no voice, and don't know where to turn," she says. "I'm marching for Anna, for the 200,000 Minnesotans with an eating disorder… and I'm really marching for The Anna Westin Act.… I want to make sure people are able to get the most appropriate care, the best care available, and to me, that's what it's all about."
- The broken girl and a mother's war with UnitedHealth
- UnitedHealth Swimming in Riches as Insurers Angle for Double Digit Premium Hikes
- UnitedHealth is getting even richer on Obamacare
- Medica, Prairie Care are in a pissing match over kids' mental health
- Michael Casey's "You Matter" movement turns depression to positivity
- The search for Brandon Swanson continues seven years later