Today marks two years since the passage of the 21st Century Cures Act. It included the first-ever federal legislation for eating disorders, an achievement thanks to the advocacy leadership of The Emily Program Foundation’s co-founder and current Board member Kitty Westin. Below we share the remarks Kitty gave on November 3 at The Emily Program’s celebration of 25 years. Her passion and persistence continue to motivate us as we work to empower the prevention of eating disorders and strengthen support for recovery.
“Imagine living in a state that had very few options for specialized eating disorder treatment. Imagine needing residential care and having no place to go. Imagine having a life-threatening illness and having your insurance, that you have been faithfully paying for for years, say no to the treatment your team recommends. Imagine having almost no information available for family and friends of people suffering from eating disorders.
This was the landscape I faced when my daughter Anna was first diagnosed with an eating disorder. My daughter Anna was unable to access the care she needed for her eating disorder, when she needed residential treatment there were no residential beds in MN. Our insurance company refused to authorize treatment that could have saved Anna’s life and I felt alone, scared, helpless and woefully uninformed about eating disorders or how to best help my daughter fight her illness. Anna died of anorexia on February 17, 2000. I didn’t know how to live without her.
The day Anna died I wondered how I could go on living, but I knew I had to find a way. I couldn’t bring Anna back but maybe I could tell her story to help others. Our family started a foundation in her name, and I found my purpose. I had no idea how to take the first step forward, so I just started down a path, and I began advocating for change, using my voice and moving forward – toward a world that I could visualize without disorders.
Realistically (sadly), I understand that some of you face some of the same barriers that I faced so many years ago, but there has been positive change. Today someone with an eating disorder has access to the full continuum of care at The Emily Program. Today there is a law that (at least in theory) prevents insurance companies from withholding access to treatment. Today there is support for family and friends, and today there are residential beds available in MN.
Over the past 25 years The Emily Program has grown and developed into one of the largest and most highly regarded eating disorder treatment programs in the US. It has been a leader in insuring that programs offering eating disorder treatment meet rigorous standards. It has made certain that information and support is available to loved ones. The Emily Program and The Emily Program Foundation have been the nation’s leaders in advocating on behalf of people affected by eating disorders. And, in my opinion maybe most importantly, they have encouraged and empowered people to openly talk about their battles with eating disorders. We have worked to end stigma and shame and in the process we have made it okay to ask for help and to seek treatment. This is huge – we all know that eating disorders can be successfully treated if access to treatment is available!
So, what has changed? Today there is HOPE! The Emily Program Foundation offers hope for prevention of eating disorders; The Emily Program offers hope of recovery from eating disorders, and together we can hope for a world without eating disorders.
Honestly, early in my journey there were times when I wanted to crawl away and not talk about the disease that killed my daughter. In some ways it could have been easier to hide the fact that Anna died from a mental illness. It was hard but we stood up and honestly talked about eating disorders, suicide and mental illness. We were determined to bring eating disorders out of the shadows. To help people understand that they are real illnesses that need to be treated, not whispered about, shamed or made fun of.
A few years ago The Anna Westin Foundation and the The Emily Program Foundation merged in order to be stronger together. I am proud of my work with The Emily Program and The Emily Program Foundation. I am as passionate as ever about using my voice, advocating for change and working towards a world without eating disorders. I am proud to share the podium today with people who are devoted to fighting eating disorders…with Jessie [Diggins] who has the courage to talk about it and has shown the world that it is possible to fully recover and reach the highest level of accomplishment, with Senator Amy Klobuchar who has been our champion and worked tirelessly to pass the Anna Westin Act. And I am humbled to be in the presence of all of you who are here today because you care. One last thing. It is more important than ever to take action, to use your voice, to be an advocate for change. Because, the truth is there is no hope without action. Please vote on Nov 6th. Thank you.”