In 2008, Kitty Westin thought Congress had finally passed the law needed by people with eating disorders. U.S. Sen. Paul Wellstone, DFL-Minnesota, successfully carried the Mental Health Parity and Addiction Equity Act, which supporters intended to use to prevent health insurance issuers from unfairly limiting mental health benefits in favor of medical and surgical coverage.
Westin, whose daughter died of an eating disorder, had been lobbying for a bill that would effectively extend healthcare coverage to allow residential care for those suffering from anorexia, bulimia, and more recently binge eating. It also would raise awareness about eating disorders.
U.S. Sen. Amy Klobuchar, DFL-Minn., has been author of the Anna Westin Act for the past four years. The timing seems right for it to pass into law. Congress is working on a mental health bill, the Anna Westin Act is likely to have no financial impact to the federal government, and members of the U.S. House of Representatives and Senate are on board.
“This is the first time we’ve had bipartisan support,” Klobuchar said in an interview with the Woodbury Bulletin.
She believes supporters of the 2008 law didn’t mean to leave out health coverage for people suffering from eating disorders — the psychiatric illness with the highest mortality rate in the U.S. Twenty percent die.
Most of the state’s delegation to Congress has signed onto the bill. One Republican hasn’t — U.S. Rep. John Kline, R-Minn., who represents a district that includes Woodbury.
“Eating disorders don’t care if you’re Republican or Democrat or independent,” said Westin, an advocate for The Emily Program, which has an office in Woodbury.
The law’s intent
Since the law passed eight years ago, the intent of the Mental Health Parity and Addiction Equity Act has “not been uniformly implemented by health insurance,” Klobuchar said.
Her bill aims to clarify the intent of the 2008 law. Eating disorders were not specifically listed in the Wellstone law, and Klobuchar’s bill would update it.
Residential treatment is the best way to treat an eating disorder, Klobuchar said. But 50 percent of health insurance companies fail to cover more than hospital care for patients with eating disorders.
“They don’t cover mental health issues like physical issues,” said Frank Schlick, a Woodbury resident and local eating disorder support group facilitator.
Some people leave treatment because they can’t pay out-of-pocket costs. “They’ve had to walk away, and that’s just not right,” Schlick said.
Westin knows what it’s like to have health insurance benefits denied at a time when they are most needed, with the most awful results possible.
Her daughter, Anna, died on Feb. 17, 2000. At age 21, she committed suicide, in part, because her family was so dedicated to getting her help for anorexia that they were paying cash for residential care. The bill totaled as much as $50,000. Anna’s parents felt they could make things work financially, because Anna’s life was worth it. But Anna didn’t want to be a burden.
Westin said Anna died from her eating disorder.
Klobuchar believes that Anna’s story isn’t the only one out there, and that’s the reason behind her support for the Anna Westin Act.
“For me, that’s a lot of it — her story,” Klobuchar said.
“She’s the face of the 30 million people who suffer from eating disorders,” Westin said of her daughter.
Prior to Anna’s death, Blue Cross Blue Shield of Minnesota denied coverage prescribed by her doctor. Anna was in denial about her anorexia and entered into a power struggle with her parents, who of course couldn’t force a woman older than age 18 to get treatment. When the insurance company authorized a few days in the hospital but after that decided it was no longer medically necessary, Anna had an out and would tell her parents it’s no longer medically necessary. She could discharge herself from the hospital.
When doctors said Anna needed a high level of care, the health insurance authorization bordered on “fail first,” Westin said, and a lower-than-necessary level of care strengthened Anna’s eating disorder.
“She spent her last months in a revolving door,” Westin said.
By the time she agreed to seek inpatient residential treatment, she was in critical condition.
“There’s this 20-year-old trying to fight for her life,” Westin said of the decision to tell doctors they will pay out of pocket. “I’m making a decision I’m going to be on Anna’s team. Our insurance company should’ve been right there on that team.”
Then, Anna lost hope, Westin said.
Anna once told Westin: “I wish that I was battered and bruised from a car accident and people could see what I’m feeling.”
Minnesota Attorney General Mike Hatch and the Westin family teamed up to charge the company with denying adequate care to Anna and others like her. In 2001, Blue Cross settled out of court for $8.2 million for treatment costs.
Before Westin filed her own suit, the company offered a $1 million settlement to the family.
Anna Westin House
The money has ended up at The Emily Program. It was the seed money for the Anna Westin House, Minnesota’s first residential program for clients with eating disorders.
“When Anna needed that, there was not one bed available in Minnesota,” Westin said. “That money had to go for fighting eating disorders.”
The Anna Westin Foundation ran the facility until 2007, when the Anna Westin House was turned over to The Emily Program. In a merger, Westin’s foundation gifted its cash balance to The Emily Program Foundation. The Westins’ court settlement is not fully spent.
Proud of handing off her residential program startup, Westin dedicated her time to federal advocacy for the Anna Westin Act, in hopes of helping people overcome obstacles that keep them from coming to treatment for eating disorders.
She also initiated five family and friends support groups in the Twin Cities, including one attended by the Schlick family. Frank and Janelle Schlick facilitate the Woodbury friends and family group.
Heart and soul
Through 16 years of pain, Westin has pushed for a bill that might stand its best chance of passing by the end of this year. She wanted her daughter’s unnecessary death to lead to something positive.
The story of Westin’s activism and what is now Klobuchar’s bill started the day after Anna died.
That’s when the Anna Westin Foundation was conceived.
“My husband said, ‘What?’” Westin said. “We started fighting the eating disorder with our heart and soul. If we could tell her story really openly and honestly, maybe someone would be saved.”
There are men and women, young and old, people of all economic classes and races who suffer from eating disorders.
Eating disorders cause medical complications such as cardiac arrhythmia, cardiac arrest, brain damage, osteoporosis, infertility and death. The mental strife of an eating disorder persists beyond medical consequences, as anxiety and depression are common side effects.
While eating disorders can be treated, only one in 10 people with an eating disorder get treatment, Klobuchar said.
Advocates said that specialized treatment leads to recovery and reduces mortality.
“We’ll pass the Anna Westin Act, and then we’ll go on and do the next thing we have to do,” Westin said. “We’re coming to not an end — because there’s so much more to do — but a point where we’re going to help, I believe, millions of people.”