Please see Kitty Westin on her recent TEDx Talk discussing ending the stigma and shame around eating disorders and the importance of being an advocate for mental illness.
By Caroline Kinskey
I traveled alone for the first time to attend EDC Advocacy Day in Washington D.C. I was nervous to be flying and traveling alone, but also excited and incredibly grateful that The Emily Program Foundation provided me with this opportunity to advocate for those suffering with eating disorders.
After breakfast and chatting with other advocates on Capitol Hill, Amy Klobuchar gave the opening address. She was inspiring, and I am proud to live in a state that has a senator who passionately advocates for the eating disorders community. Message training followed, which informed the advocates of the goals for the day, approach strategies in telling our personal stories, and knowing what we need of the people of Congress. Specifically, we need Congress to recognize National Eating Disorder Awareness Week and urge the CDC to re-include eating disorder surveillance questions in national surveillance surveys. The team from Minnesota met with five congressional staffers. The staffers were very receptive, and it was evident that our meetings and personal stories made a difference. EDC Advocacy Days have made a marked impact in the past, and they continue to influence policy on Capitol Hill regarding eating disorders. Although there has been change, our work is not done.
Through this experience, I realized how fortunate I am to live in a country where your voice matters and is influential.
It was inspiring to hear people who have recovered from their eating disorders tell their personal stories and pay it forward by advocating for others still struggling. As a graduate student in clinical psychology who wants to work with individuals with eating disorders, contribute to the research, and continue to be an advocate, this experience was invaluable.
The Emily Program Foundation Receives Generous Grant from 27th Annual Cities 97 Sampler!
April 20 – St. Paul, Minn. – Cities 97 announced that The Emily Program Foundation has been selected to receive $10,000 from the proceeds raised in the 27th annual Cities 97 Sampler benefit compilation album.
More than 30,000 copies of the Cities 97 Sampler album were sold at Target stores in the Twin Cities, raising over $530,000. The station will distribute that money to The Emily Program Foundation and 70 other nonprofit organizations that serve Minneapolis, St. Paul and the greater Minnesota area.
“All of us at The Emily Program Foundation are deeply grateful to Cities 97 and iHeartRadio for this generous grant. These funds will provide education, outreach, and grassroots advocacy to support our mission to save lives, change minds, and work to eliminate eating disorders,” said Billie Gray, Ph.D., executive director of The Emily Program Foundation.” “We also want to thank the listeners of Cities 97 who make this incredible philanthropic support possible in our community through their purchases of the annual Cities 97 Sampler. Thank you, Cities 97!”
The limited edition Cities 97 Sampler Volume 27 features performances recorded live in Studio C and is the longest running radio music or performance compilation for charity in the country. Over the last 27 years, Cities 97 has raised over $12 million to support local nonprofit organizations.
Proud sponsors of Cities 97 Sampler Vol 27 include: Target, TCF Bank, By the Yard, and Children’s Hospitals and Clinics of Minnesota.
Republished with permission from emilyprogram.com
Before I go into detail about the Anna Westin Act, I thought it would be interesting for readers to learn how the “dream” of eating disorder legislation became a reality.
Legislation was made possible through The Eating Disorders Coalition (EDC), an organization based in Washington D.C. that is on a mission to advance the recognition of eating disorders as a public health priority throughout the United States. The EDC was formed 16 years ago by a group of six organizations as a way to bring eating disorder issues to the attention of policy makers in our nation’s capitol. I am an original member, past president and current board member of the EDC. We are now a group with nearly 50 member organizations and hundreds of individual members. In addition to utilizing grassroots advocates to help us accomplish our goals, the EDC employs a policy team that has over 25 years of experience working on mental health issues on Capitol Hill. We understand the good, the bad and the ugly of politics.
Developing, introducing and finally passing Federal legislation is complex, time-consuming and can be frustrating. One fun way to introduce you to D.C. politics is to invite you to review a short film that you probably watched in middle school. Do you remember, “I’m Just a Bill”? Check it out on YouTube for a blast from the past!!
Before new legislation is introduced, there are countless planning meetings and hours of work that take place behind the scenes. Hours of discussions and hundreds of revisions take place before a proposed bill is ready to be “shopped around” in Congressional offices. Finding sponsors who will support a proposed bill is necessary and can be difficult. Once a potential lead sponsor is identified, a new round of meetings takes place before a bill is given the go-ahead to be introduced in the House or the Senate. This process is arduous and can take many months or even years. It requires patience, building relationships, negotiations and accepting compromise.
The EDC had a comprehensive bill called the Federal Response to Eliminate Eating Disorders Act (FREED) that was introduced in 2009 before we started working on the Anna Westin Act. FREED was the first comprehensive bill specific to eating disorders in US history. The EDC held two national policy conferences that brought together patients, families, providers, researchers, education/prevention experts, and advocates to create the first draft of the bill. At that time, both houses of Congress favored passing sweeping legislation that addressed mental health issues. However, the political climate changed in Washington D.C. In order to get a bill introduced that had any chance of passing, we also had to change.
The EDC had to step away and consider its next move. The result was the decision to “recreate” FREED into a new eating disorders-specific bill: the Anna Westin Act. The decisions related to what to include in the Anna Westin Act were not taken lightly and they were not made in a vacuum; we worked hard, did our homework, and sent our policy team into both Democratic and Republican offices to get ideas and feedback. In addition, we polled EDC member organizations, individual advocates, and invited the public to contact the EDC with suggestions. We took all ideas seriously. The components of the bill were carefully thought out to make it appealing to both Democrats and Republicans and many of our friends in the House and Senate have confirmed that they will support the Anna Westin Act by signing on as sponsors and co-sponsors.
On May 21, 2015 the Anna Westin Act (HR 2515) was introduced in the US House of Representatives with bipartisan support from Rep. Ted Duetch (D-FL-21) and Ileana Ros-Lehtinen [R-FL-27]. And, on July 28, 2015 The Anna Westin Act (S 1865) was introduced in the Senate by Democratic Senators Klobuchar and Baldwin and Republican Senators Ayotte and Capito. The Anna Westin Act is the culmination of thousands of hours of work by hundreds of people over many years and it will address some of the most problematic issues facing people who are affected by eating disorders. It will improve early detection and care for eating disorders by providing training for physicians, health professionals, school personnel, and the public. It will clarify the Paul Wellstone and Pete Domenici Mental Health and Addiction Equity Act of 2008 to ensure that all levels of treatment are covered by insurance. In the House, it will require that the Federal Trade Commission studies and reports on whether regulation is needed for digitally altered images of people in advertising, and if so, mandate strategies to achieve regulation.
I am very happy to report that the Anna Westin Act has achieved significant progress. We now have 72 cosponsors in the US House of Representatives and 12 United States Senators cosponsoring the bill. We are working to bring more members in the House and Senate on board and we are also working with Congress to get language from the bill included in broad mental health reform bills that are currently being considered by the House and the Senate. March 16, 2016 was a historic day for the eating disorders community when provisions from the Anna Westin Act passed with unanimous, bipartisan support in the US Senate Health, Education, Labor, and Pensions (HELP) Committee. This was a huge victory and we are excited to keep this momentum going by continuing our efforts during Eating Disorders Coalition Lobby Day on April 18, 2016.
One of the reasons the EDC has been successful in bringing our message to policy makers is through our advocacy training and Lobby Days in Washington D.C. and virtual Lobby Days in your home state. The people who come to D.C. for Lobby Day receive training on how to be an effective grassroots lobbyist and then, as part of a team, speak with Members of Congress at meetings which the EDC has set up. Our advocates share the impact that an eating disorder has had on them personally, as well as talk about the Anna Westin Act and how it will help those impacted by eating disorders. The EDC website has short videos designed to help you understand grassroots lobbying and what to expect at EDC Lobby Day. Everyone is invited and encouraged to attend EDC Lobby Day. Please go to: www.eatingdisorderscoalition.org for information on how to register for our upcoming Lobby Day.
The Anna Westin Act does not make me giddy with excitement. In fact, it makes me incredibly sad because it comes too late to help Anna. But it does give me hope that necessary change can happen and it won’t take another 16 years of suffering for this change to happen. The Anna Westin Act is not about Anna or our family, it is about the millions of people who struggle with eating disorders. It is about creating a world where eating disorders are understood, taken seriously, treated effectively and prevented whenever possible.
I sincerely hope that the entire eating disorder community; including people who struggle, family and friends, professionals, policy makers and the community in general will get behind the Anna Westin Act. By working together we can continue to make progress in the fight against eating disorders. We know that by working together we can prevent more people from suffering and dying. Your voice IS important and in Anna’s words: “may your dreaming never end and your voice never die.”
Republished with permission from emilyprogram.com
I never wanted to be an advocate. I did not train or study or seek out “master” advocates to mentor me. I did not go to school or attend workshops or listen to webinars about becoming an advocate. I had no intention of starting a movement, being drafted into an army of eating disorder activists or becoming the thorn in the side of insurance companies. However, on February 17, 2000, the day my beloved daughter Anna Westin died of an eating disorder, I was launched into a life that I could not have imagined. The day Anna died of anorexia was the day that my life changed forever and the day I found my purpose.
Anna was a spirited, fully alive, amazingly talented young woman. She grew up in a family who cherished her and she had dreams and hopes of a future filled with romance, adventure and excitement. Of course, that was before she was stricken with a disease that affects over 30 million Americans, a disease that has the highest mortality rate of any mental illness. Anna was diagnosed with an eating disorder, anorexia, when she was 16 years old and that disease killed her three months after her 21st birthday. Anna never had the chance to finish college, embark on a career or find a life partner. She never had the opportunity to use her voice and fight for what she believed in but she left me instructions to be her voice. In one of her final journal entries she wrote these powerful words: “All that’s been done and said crowd through your mind; a challenge begins. May all your love, your joy and pain, all your fears and desires lead you to your own promises, may your dreaming never end and your voice never die.”
What happened to Anna? How does an intelligent, talented, spirited young woman go into a death spiral and find it impossible to come out alive? I have spent the past 16 years trying to answer those questions. I have done this for selfish reasons. I wanted more than anything to bring Anna back but since that was impossible I decided that telling Anna’s story might save someone else from an early and unnecessary death. Knowing that some other mother has been spared the horror of burying a child has helped me cope with Anna’s death and heal from the loss.
I have gradually, and often reluctantly, become an expert on eating disorders. I confess that I knew almost nothing about eating disorders when Anna was first diagnosed. In fact, there was very little information readily available and we found that support for the family was nearly non-existent. To add insult to injury we also discovered that many professionals had little training about eating disorders and insurance companies routinely denied authorization for treatment of these debilitating and deadly diseases. After Anna died I realized that by speaking honestly and openly about her life and death I might be able to bring about much needed change in the way eating disorders are understood and addressed.
Over the past 16 years I have been active in many eating disorder organizations. I have seen progress in some areas and I am thoroughly frustrated that we still have so far to go. Every 62 minutes someone in the United States dies as a direct result of an eating disorder. This is an appalling statistic that breaks my heart. But, there is good news. There is hope. More and better treatment for eating disorders is available, there is more support for family and friends of people who struggle with eating disorders, and there is finally attention to eating disorders at the federal policy level. There is eating disorders specific Federal legislation, the Anna Westin Act of 2016, that was introduced in both the House and the Senate about a year ago and there is reason to be very optimistic that this legislation will pass!