Last month, Kitty Westin’s labors finally bore fruit. For 17 years, since her daughter Anna died as a result of a years-long struggle with anorexia, the Minnesota native, co-founder of the Washington, D.C-based Eating Disorders Coalition, has been singularly focused on passing legislation that would mandate insurance coverage for advanced eating disorder treatment and eating disorder education for health-care providers.
On Dec. 13, 2016, President Barack Obama signed the Anna Westin Act into law as part of the 21st Century CURES Act. Westin was there, and she marked the moment as one of her life’s great accomplishments.
“I was launched on this path,” Westin told me. “It was destiny that led me to become this fierce advocate. Since Anna died, it’s been my mission to help people who are struggling with eating disorders, to make sure that they have access to the care they need and to guarantee that medical professionals are trained to identify people struggling with eating disorders. With this legislation, we’ve accomplished all that.”
When I spoke with Westin a week after the Anna Westin Act became law, her voice emanated a sense of relief and pride that her goal had been reached. But she also took pains to make it clear that she felt her work was far from done.
“There’s still so much to do in the fight against eating disorders,” Westin said, firmly. “I’ve still got a job to do.” She told me about the Anna Westin Act’s long journey to passage, and about her plans for the future.
MinnPost: You could’ve reacted to your daughter’s death by withdrawing into private life, but instead you chose to become an outspoken advocate for eating disorder legislation. How did you make that decision?
Kitty Weston: For me it was the realization that there were some things that could have happened that may have prevented Anna’s death. I came to understand that if I told Anna’s story maybe we could help someone else live by making the changes that could have helped her. We felt really strongly about this: Within days of Anna’s suicide, our family decided that we would be really open and honest about her death and its causes so that we could break the silence and help others live.
MP: That was a bold reaction.
KW: I’m a psychologist. Sometimes I think that instead I could’ve chosen a path to treat people with eating disorders. That would have been a way to help others. But I’ve been passionate about this topic for a long time and I felt like I needed to make changes on a larger level. I did what I did so that nobody else has to suffer like Anna did.
MP: How did you get the idea to work on legislation at the federal level?
KW: One person that truly inspired me was our late Senator Paul Wellstone. After Anna’s death, I spoke with him and he told me that I should take my story to Washington. He said I should bring as many parents like me as I could and we should all tell our stories because that’s what makes change happen in Washington.
I was very naïve at the time. I said to him right away, “OK. I’ll do that.” But the truth was I had no idea how to do what he was describing.
MP: Is that how the Eating Disorders Coalition was created?
KW: Partially, yes. In August or September of 2000, just months after Anna’s death, a small group of about six people held the first meeting of what would become the Eating Disorders Coalition. What gave me the knowledge, the strength, the fortitude to do that at that time, I just don’t know. But we forged ahead.
All I knew was I had to be Anna’s voice. One of the reasons I felt driven to be her voice was because of this paragraph that Anna wrote in her journal that I read after she died. She wrote, “May dreaming never end and your voice never die.”
I took those words quite literally. I felt they said that she was giving me her permission to be her voice. But I never dreamed it would take 17 years to pass this legislation.
MP: What were some of the biggest projects you worked on with the Eating Disorders Coalition?
KW: I didn’t even know what we were looking at the first few years. We were searching for goals that we could achieve.
At the beginning we were focused on mental health parity. When the Mental Health Parity Act [PDF] passed in October 2008, we were really proud of that accomplishment. We contributed to passing that bill, but unfortunately the final version did not specify that advanced medical care for eating disorders would be covered by insurers. That has been a problem since then.
People are still having trouble getting insurance companies to cover higher levels of care for eating disorders. This was Anna’s problem. She needed residential treatment, but the insurance company wouldn’t pay for it. So we started working on eating disorder-specific legislation. We discovered that this type of legislation is hard to pass because most members of congress don’t want to support something that is that disease specific.
MP: How did the act get named after Anna?
KW: In 2014, the Eating Disorders Coalition asked if we would be willing to name the bill after our daughter. They explained that hers was a compelling story that people could tell and use to talk about their own struggles with eating disorders.
MP: Was this a turning point in moving the Anna Westin Act closer to signing?
KW: Yes. In a way, I think. A big turning point was when our wonderful Senator Amy Klobuchar stepped right up and said, “I’ll be the lead.” She went out and got another Democrat and two Republicans [Sens. Kelly Ayotte, R-New Hampshire; Shelly Moore Capito, R-West Virginia; and Tammy Baldwin, D-Wisconsin] to stand with her. It was brilliant to get bipartisan support. It really helped move everything along.
We were so blessed and happy to have the support of key legislators like Amy Kobuchar. In the end all of the other Minnesota legislators supported our bill except one.
MP: How did you push the Anna Westin Act across the finish line?
KW: Through sheer determination. The last few years have consisted of lots and lots of trips out to D.C. to talk to legislators and to Senator Klobuchar. It wasn’t easy.
There were many times I got frustrated, but Senator Klobuchar kept saying, “We’re going to get this done.” She kept assuring me it was a high priority. She’d say, “We have to do this.” At the final hour, the last piece of legislation that President Obama signed into law was the 20th Century CURES Act, which included the Anna Westin Act. It was a miracle.
MP: It must feel amazing to have finally achieved your goal after all these years. What’s your reaction?
KW: I feel gratitude. I feel relief. I feel like this long, long journey has come to a successful end. Of course there is a caveat: It’s not over yet. You don’t pass a bill and everything gets fixed like that. There’s still a lot of work to do to. Advocates have to remain vigilant.
But, that said, I still feel so happy. It feels like it’s a huge accomplishment. I, along with thousands of other people, pushed this to the finish line, and then Senator Klobuchar and her colleagues took it across the finish line. I really do have a sense of relief that this part at least is done.
MP: Now that you’ve achieved this goal, what are your plans?
KW: I will still be involved. That won’t change. I have made it my life mission to fight eating disorders, and I will still do that. I don’t know at what level I’ll be involved, but I think that now we’ve passed this piece of legislation my role is going to change. I do know that I don’t have to be front and center all the time anymore. I’m happy I can have more of a private life again. It’s about time.
At the Eating Disorders Coalition, we are already asking ourselves, “What are we going to do next?” We’ve been doing this for so long. We are working on prioritizing what our next charge will be.
MP: Talking to you, I can’t help but think of Patty Wetterling and how, after 27 years, she’s finally come to a resolution about the kidnapping and death of her son Jacob. I wonder how she’s coping with finally having the answers she’s been seeking for so many years. Do you think the two of you are experiencing similar emotions?
KW: That’s a good question. I don’t know. Our stories are very different. But I can say that when you make something your life’s mission and your passion and then there’s an ending it’s a difficult adjustment to move on to a new chapter in your life. But I’m excited to see what the new beginning is for me. I’m excited to reinvent my role.
One exciting thing that will be happening this year is I’m going to become a grandmother in April. And I turned 65 yesterday, so I’m old. It’s a good milestone. I like being a wise old woman.
I want to become a mentor for others. I’d like to mentor younger people that want to be advocates and use their voices to make change happen at a federal level. I look forward to being able to do that.
MP: What do you think you would be doing today if Anna hadn’t died as a result of her eating disorder?
KW: Anna’s death really changed me. It’s pointed me on this road and this path and toward this purpose, which I doubt I would’ve found otherwise. I’d like to think that even if Anna hadn’t died, I would still be a person who would use her voice to advocate for other people. My mom was this wonderful, compassionate, amazing woman with a strong voice. She taught me and my sisters to not be afraid to speak up for what we believe in. I’d like to thank her for that.
MP: How has the world changed since Anna’s death?
KW: Seventeen years ago, hardly anybody was talking about eating disorders publicly, so it was shocking when our family decided to come forward and talk openly about Anna’s death. She had an eating disorder and her suicide was a direct result of the shame and stigma she encountered surrounding her illness. We wanted to make that clear. When reporters started telling our story, there was this huge outpouring of gratitude from people who’d experienced similar tragedies. There was this void that we were able to fill. I’m grateful for that.
Not so long ago I was at a White House eating disorders summit and the head of one of the agencies showed me an old People magazine story about Anna from way back in 2000 that she had clipped and kept. That’s the power of being honest and open.
MP: Are you proud of what you were able to accomplish through grit and determination?
KW: I’m proud of the legislation, but I want to make it clear that it wasn’t me alone that did this. I don’t deserve being credited with making this happen. It truly was the work of the advocates and our policymakers that picked this up and made it happen. Many great national organizations like NAMI worked so hard to make it clear that mental illness is not a weakness of character, that it is a real illness. That sort of work was key to our success. I’m proud that I was able to be part of this effort.
Thank you Kitty and all who pushed this legislation through
I never met Anna, but we treated at the same facility. I was there shortly after her death and it was still a very impacting tragedy that we were aware of constantly wondering if our insurance would “allow” any more days inpatient. I was blessed to be the second admitted patient to the first Anna Westin residential house. My deepest gratitude to all who have kept fighting for better, longer etc insurance coverage. I have suffered from this illness, next month, for 32 years and recovery has eluded me thus far. The things in this legislation would have been SO helpful if it’d been available when I was so young dealing with my eating disorder. I cry to think of all the “Anna’s” I treated with who died due to this illness. Many thanks to you, Kitty. Anna’s memory still lives with all of us who knew her story. God bless you for doing the things most parents can’t. The illness of having an eating disorder is often too much for a parent of an afflicted child. Thanks for being the voice of us who still are fighting this deadly illness and aren’t able to have the strength to use our own voice’s.