Kitty Westin & Anna's Law

Dear EDC Advocates and Activists,


Please read the following very powerful, emotionally raw and moving words written by Kitty Westin, Anna's mom.  Then, please register to join us on Capitol Hill for EDC National Lobby Day on May 13th. #TheTimeIsNow #AnnasLaw
 ________________________________________________________

Written by Kitty Westin:

It is hard to find the right words to express how I feel about the Anna Westin Education, Prevention and Training Act of 2015 (Anna’s Law). Honestly, I am as conflicted as I have ever been. I have experienced a combination of great sorrow, elation and accomplishment over the past few days.

Anna Selina Westin

Great sorrow. How can I not feel pain and sorrow right now? Anna died from an eating disorder. Anna had her whole life ahead of her. She was an amazing young woman with hopes, dreams and a bright future full of possibilities until she got sick. Her life was cut short by a disease that can be effectively treated if given access to the appropriate level of care for the amount of time it takes to recover. It is excruciatingly painful to remember how much she suffered and how helpless we felt when we were fighting for her life at the same time we were fighting her insurance company. The pain of having a child die does not go away. It does become bearable over time and I have found a way to live without Anna much like people find a way to live without a limb. You adapt, adjust, form scar tissue, and find a new way to be in the world. Life goes on, you figure out how to go on as well but you never stop longing for your child or wishing for just one more hug, one last word or one last chance to make it better. Our family found a way to transform the horror of Anna’s death into something positive by putting energy into fighting eating disorders and trying to help others avoid a similar fate as Anna. Fighting eating disorders and helping others who are desperately fighting for their lives has helped me heal and given me strength and a purpose. If I have helped just one person live then I feel like Anna did not die in vain.

The Anna Westin Education, Prevention and Training Act is not about me or my family and it is not about Anna. It IS about the millions of people who suffer from eating disorders who do not get identified, diagnosed, or treated effectively because so many people lack even basic knowledge of eating disorders.  

Elation. Anna’s Law will help millions of people who suffer from eating disorders. Anna’s Law will expand educational opportunities to health care professionals across the US and in turn help those same professionals be better equipped to recognize, diagnose and treat eating disorders. Anna’s Law will give the millions of people who struggle with eating disorders a fighting chance!

EDC National Lobby Day

After 15 years of hard work and commitment there is movement in the fight against eating disorders at the Federal policy level. It has been an uphill struggle to get attention to eating disorders and to get the US Congress to recognize that eating disorders are life-threatening illnesses that need legislative action. I have been involved with the Eating Disorders Coalition for Research, Policy and Action for 15 years. I am proud of the work and accomplishments of the EDC. We have given citizen advocates a voice, Members have listened and heard our voices, we have influenced legislation that has helped millions of people who struggle with mental health issues, yet we have been unable to pass legislation specifically dealing with the multitude of issues those affected by eating disorders face.

I know that passing Anna’s Law will be a huge step in the right direction. Educating health care workers to identify, diagnose, refer and treat people who are struggling with eating disorders is essential if we expect to win the war against eating disorders. I hear far to many stories from sufferers and their families and caregivers about lost opportunities to intervene early and quickly in order to stop an eating disorder before it becomes entrenched and before it causes irreparable damage. Anna’s Law is designed to address the lack of training and education among health care professionals that makes it nearly impossible for most people to get early intervention and early treatment for an eating disorder. We know that the best treatment for an eating disorder is prevention. And we know that the sooner an eating disorder is diagnosed and treated the higher likelihood of complete recovery. Let’s pass Anna’s Law, it will improve the chances for compete recovery from an eating disorder for everyone who struggles.

Accomplishment. Fifteen years ago I buried my daughter, Anna Selina Westin. She was just 21 years old. If you have not had to bury a child you cannot even imagine the suffering, the unbearable pain, the desire to give your own life willingly if your child could have one more day on earth. Anna was an amazing young woman. To know her was to love her. She had spunk, talent, a personality that endeared her to everyone, a lively spirit and a huge heart that she wore on her sleeve. Anna was cherished by her family and friends and she is still remembered today for her kindness and compassion.

Kitty Westin at the Anna Westin House

When Anna told me that she intended to go on a diet at age 14 I did not question her motives although I did wonder why. If I had known then that that decision would prove fatal I would have reacted much differently. Fifteen years ago there was little in the way of education or prevention for eating disorders. There were occasional made for TV movies that addressed eating disorders but they mostly suggested that an eating disorder was a choice or a behavior problem. There were few books, organizations, or resources to help patients and/or families understand what an eating disorder is and how to fight one. I don't recall being invited to any educational programs at Anna’s school or in the community and until Anna was diagnosed I know little about eating disorders.

Today, there are many great resources including accurate information that is readily available, and many organizations, books, and websites that are designed to help the sufferer, families and the public better understand eating disorders. There is a large and growing advocacy movement that is fighting eating disorders on multiple levels and the options for treatment have grown and improved.  Research has made significant progress in the understanding of the bio-social-psycho theory of eating disorders and into the most effective ways to prevent and treat them. There has been progress in the fight against eating disorders and I am proud to have played a small role in the improvement we have seen.

Anna Westin House

To date the most meaningful accomplishment of my passion to fight eating disorders is the creation of the first residential treatment program for eating disorders in Minnesota, the Anna Westin House (AWH). I have always said the Anna Westin House is Anna’s legacy. I am incredible proud of the Anna Westin House and I always will be. I know that the house has helped many sufferers thought the years and it has saved many lives. However, Anna’s Law truly is historic. Anna’s law goes beyond the AWH in that it can and will help millions get identified and referred to the treatment they need to fully recover from an eating disorder. Anna’s legacy continues to grow and develop and if I died today I would feel like my mission was accomplished. My mission 15 years ago and remains my mission today is to fight eating disorders through education, prevention and advocacy.

Speaking at 1st Ever M.O.M. March in DC

Fifteen years ago, while planning Anna’s funeral, my husband and I started the Anna Westin Foundation. We had no idea what we were getting ourselves into or how to start and run a foundation. Today, The Anna Westin foundation is The Emily Program Foundation and we continue to work hard achieve our goals. We envision a world without stigma and misconception about eating disorders, and disordered eating. We will be the catalyst in shaping new, informed conversations through advocacy, social outreach, and collaboration with community partners. We are on a mission to save lives, change minds and work to eliminate eating disorders.

Speaking at Congressional Briefing in DC

It is humbling and encouraging and empowering to know that we have a chance to pass legislation that will hit eating disorders where it hurts and bring it to it’s knees. The time is NOW for The Anna Westin Education, Prevention and Training Act of 2015. Anna’s law will save lives. It is to late for many but the time is NOW for millions for people who suffer from eating disorders and for our children who will develop eating disorders in the future. Together we can knock eating disorders down and win the war!

Together WE DID IT!! (and there's more to be done...!)

Dear EDC Advocates:

I can barely contain myself as I type up this blog!! 

We ("we" includes all +EDCoalition1 Member Organizations and every single advocate (aka: EACH OF YOU)) just got HUGE news from Congressman Ted Deutch's office regarding +Centers for Disease Control and Prevention (CDC) and our advocacy on school-based BMI screening, surveillance and reporting!

Today we learned that CDC reviewed the Dear Colleague letter Congressman Deutch's office initiated and that YOU advocated for, both in-person and virtually, on October 1, 2014.  As a result of the Dear Colleague letter and Joel Richard, Ted Deutch's amazing staffer, having a conversation on our behalf with CDC about the concerns expressed within the Facts and Concerns About School-Based BMI Screening, Surveillance and Reporting and the Dear Colleague letter, CDC decided to IMMEDIATELY start working on several changes to improve availability of information to schools conducting in-school screenings!! These immediate changes include:

• CDC will update changes to the BMI measurement in schools information available on their Healthy Youth webpage:
• Create a web page that emphasizes the safeguards and considerations outlined within the BMI Measurement in Schools journal article and executive summary
• Send out the new page to CDC grantees and CDC partner organizations to disseminate
• Offer the new page to the Department of Education to send out through their grantees and partner networks

• Provided targeted webinars on this topic to:
• Department of Education grantees (e.g., PEP grantees)
• Presidential Youth Fitness Program grantees
• CDC grantees funded for school health strategies (note: these make take more time to schedule and/or record)

• Add cautionary, safeguard language to CDC’s BMI tool for school calculator webpage.

When I had the honor of becoming the EDC's Policy & Communications Director on June 1, 2014, the EDC President,  +Johanna Kandel, and I immediately agreed that BMI screening in schools was an issue we wanted the EDC to champion on behalf of families, treatment providers, researchers, sufferers; on behalf of ALL those impacted by school-based BMI screening.  We had heard too many horror stories from parents, students, school nurses, teachers and others, about some of the ways this practice was taking place in so many schools, and we knew that something needed to be done to put an end to the irresponsible and oftentimes harmful screening practices. 

In early August 2014, Johanna and I met with Joel in Congressman Deutch's office to describe the problems that many of you had relayed to us in private conversations and emails in which you detailed the unsettling (at best) ways that your child, you, your best friend, etc., had endured a BMI screening in school.  Joel listened to us detail your concerns and immediately took the issue to the Congressman.  The next thing we knew, Joel let us know that the Congressman was willing to author a Dear Colleague letter to address the issue with CDC.  Thanks to the Congressman and Joel for their hard work, they provided us the Dear Colleague letter in time for our fall National Lobby Day so that YOU could fight back against this practice by asking Members of Congress to sign their name to the letter and get the attention of CDC.  That CDC has acted so quickly is NOTHING SHORT OF AMAZING (miraculous really); rarely do things happen this fast on Capitol Hill.  CDC responded so quickly in large part because of YOUR ADVOCACY!!

HOWEVER, despite the immediate action by CDC, there is more to be done and we need you to help ensure CDC follows through on the requests of the Dear Colleague letter (which was updated since Joel's conversation with CDC...you can find the revised letter here)  We need you and your friends, family, colleagues, clients (if appropriate) to call your Member of the House of Representatives and ask them to sign on to the Dear Colleague letter by Close Of Business (COB), Monday, October 27, 2014.

As a result of CDC's already-acknowledged commitment to properly address this issue, the Dear Colleague letter has been revised to include two very "easy asks" that are zero-cost (a huge plus!).  The revised Dear Colleague asks CDC "for additional efforts to communicate guidance and recommended best practices, and coordinate with the Department of Education so that schools can administer BMI screening without inflicted unintended harm on students."  (The Dear Colleague letter is also now being copied to the Department of Education's Secretary Duncan.)
To each of you, for all of your advocacy and belief in the EDC addressing this issue for you, with you, together, I cannot say thank you enough for allowing us the honor of championing this cause with you on Capitol Hill.  But we must not yet rest yet. We must make our calls. We must get as many signatures as possible by COB, Monday, October 27, 2014. We must...we can...we will...together.
 
Our work continues, ~Kathleen  
__________________________

The Eating Disorders Coalition is so very appreciative to the following organizations and researcher for their collegial spirit in collaborating with us to create the "Facts and Concerns About School-Based BMI Screening, Surveillance and Reporting" document. Without your expertise and dedication to working together as a group to flush things through and suss things out, the document would not have come together so thoroughly. Thank you: The Academy for Eating Disorders (AED),   +Binge Eating Disorder Association, +F.E.A.S.T. Videos (Families Empowered and Supporting Treatment of Eating Disorders), Strategic Planning Initiative for the Prevention of Eating Disorders (STRIPED) and +kendrin sonneville.

Our Voices and Stories Matter: What Lobby Day Means to Me

by Carmen Cool

The thread that runs through all of the work I’ve done in my life is “advocate”.  It’s who I am and it’s what I do.

I have been to many Lobby Days with the Eating Disorders Coalition (EDC).  When I am there, I bring several distinct perspectives:  I am a recovered person, a psychotherapist who works with eating disorders, a woman whose sister has died from an eating disorder, and an educator who trains young people to do eating disorder prevention work in their schools.

As a feminist therapist, I believe that work has to be done at both the individual and collective level – because eating disorders are not not just a personal problem. In addition to individual work,  I want – no, I need – to do work at the social and policy level so that there are systems in place to support those people I work with.  I still get nervous when I “speak truth to power.”  I still have that voice that whispers (or screams, depending on the day) “who do you think you are?” 

What I learned that very first time was that our Representatives and Senators want to hear from us. They need us, actually. There’s no way that they can know about all the concerns and issues that are out there unless we tell them. Our stories and our voices matter.

It is important to me to use my voice to advocate for my clients. For myself. To support youth in raising their voices and changing the norms that value one body type over another. When I go to DC to lobby, I get the opportunity to take a stand and do all of that.

Carmen (front row, center) with her teen
Body Revolution Advocates

I’ve taken a group of teenagers every time I’ve gone to lobby. This has touched me in so many ways. I love to watch them sit a little taller as they realize they have something to say. I love to listen to their voices shake as they sit in a Senator’s office and then even out as they find their center. And I love to witness their resolve to keep being involved and work for something they believe in.

On top of all that, we get to explore DC! That means Georgetown cupcakes, visits to Monuments and Memorials, late night sharing circles, going the wrong way on the Metro, and jars of hazelnut praline spread from Le Pain Quotidien. But also blisters, giggles when the elevator doors open to reveal cute staffers- all part of what makes our trips fun!  Hearing them say “I have never felt so powerful in my whole life,” after lobbying - that is what keeps me coming back.

To use your voice, be listened to and taken seriously, and the lived experience of knowing that your voice can impact change – that is worth gold. Please join us September 30 and October 1 for the M.O.M. March and the 26th EDC Lobby Day! For more information and registration, visit www.marchagainsted.com.

A Mom Shares About Lobby Day

August 18, 2014
"Lobby Mommy!!"
By Faith Yesner

 

It was April of 2009, seven months after my daughter was diagnosed with anorexia, when I first stepped out of my life of "politically ignorant bliss" and onto Capitol Hill as a lobbyist for the Eating Disorders Coalition (EDC). Before that day, I didn't know what a lobbyist actually did!!  In fact, until I actually lobbied...until I took my first step into the office of my Representative (heart pounding, hands shaking), I never imagined how empowering and satisfying lobbying would be! Of course, before that day, I had no reason to get “all political" or even marginally involved in what I just didn't "get." I was your middle class mom of 2 easy going kids, one in college and one in HS, focused on college apps and auditioning for my finally flourishing acting career!

Life came to a screeching halt with the anorexia diagnosis, and devastation ensued for our family. I was barely functional from shock, fear and depression. I was full of rage at what this disease was doing to my family and more so, to my beautiful daughter. In addition to that, I had to battle insurance for coverage even when it was medically necessary and urgent, and advocate constantly to keep my daughter from falling through many treatment cracks. As I educated myself about eating disorders, treatment protocols, lack of fair and necessary insurance coverage, and lack of educational programs and info about this deadly disease, it was evident that the system was terribly flawed.   It was also evident that many battling eating disorders were, in fact, falling through the cracks and suffering terrible consequences.

Now I had a reason to become "all political"!!

When the opportunity arose for me to use my tired, angry, frustrated, heartbroken voice in a concrete way that could promote change, I jumped...onto a train from Philadelphia to the Hill (Capitol Hill), alone and nervous, to my first EDC Lobby day!!! Even as an actress with no fear of public speaking, I was scared!! This was the unknown, but considering what I had to face when the once unknown anorexia reared its ugly head, this was a piece of cake.

We had a training session the morning of lobby day and rehearsed what we were going to say to our Members of Congress and their staff. A team leader organized it all and anchored the team, so we never felt alone. Once we hit the Hill and headed towards our arranged meetings, the excitement grew! As we met our Representatives and Senators, I began to see just how powerful a Mom's voice can be. When a mom speaks, they listen...intently. Because they are human too. Because most have suffered some heartache, or have children of their own and "there but for the Grace of God go they." When you bring humanity, and a passionate mom, into the world of "

politics as usual," something happens. We catch the attention of those that hold the political power and that is the start of change!

Moms have been the catalysts for change in many political arenas. Don't mess with a mama lioness!!! She is relentless! She is a lobby mommy, and she will roar!!

I hope to see you at the MOM march and lobby day this coming Sept/Oct!!!

What's Lobby Day? -- Reflections From a First-Time Advocate

 

 “Wear comfortable shoes.”

In April of 2014, I showed up for my first Lobby Day experience with the Eating Disorder Coalition excited, but not knowing quite what to expect.  Sure, the Coalition had sent us first-timers a precursory email saying, "Here's what to expect at Lobby Day…make sure you wear comfortable shoes!" but until you're smack in the midst of Lobby Day and you start realizing that the phrase “next building” means something very different on the vastness of Capitol Hill, you don’t appreciate what amazing advice that is. 

The last time I was in Washington, DC was during high school when I attended a summer debate camp.  I know.  I was super cool.  While most boys growing up a few blocks from Wrigley Field in Chicago might have dreams of playing baseball, my dreams were about reading memos, writing policy briefs and wearing power suits.  So I was definitely predisposed to at least finding lobby day interesting.  (Also I had just finished watching both seasons of House of Cards, so was having delusions of political grandeur that led me to determine I was not above a little blackmail or something if it came down to it because, you know, that’s how much I care.)

I’ve had the humbling privilege of working with people suffering from eating disorders for most of my career, including developing programs and providing education to families, professionals, and the community at large.  I’m very familiar with the frustration of trying to convey the understanding of eating disorders as disorders of pain, loneliness and shame, which we know they are, and not disorders of vanity or self-obsession, which we know they are not.  Even though I know there are a myriad of very complicated factors responsible for the development of eating disorders, I’ve also seen the very real damage to self-esteem that can occur via societally sanctioned messages about weight and size and the way that these messages can be propagated as well as created by the media.  These messages may not cause eating disorders per se, but they don’t help and they are harmful in other very real ways.  So I was eager to learn about the proposed bill and to experience the process of how lobbying works.

The training day started with meeting my cohort of fellow activists.  I cannot convey how moving and humbling it was to hear everyone’s stories and their reasons for being there.  From those who have lost someone close to them to this terrible illness, those who have themselves suffered, those who were there because they were passionate about educating others about the issues, to those of us who work with people suffering from eating disorders, it was evident how deeply committed everyone was.  Everyone understood the seriousness and impact of eating disorders, but more striking to me was that there was not a sense of hopelessness despite how difficult eating disorders can be to experience and to treat.  Everyone was there to DO something, not by using position or access or money, but by the profound and simple virtue of being a constituent and a citizen and taking the time to show up and “make the ask.”

It was this last piece that was a surprise and a revelation to me, namely the reminder that we have the responsibility and the power to use our voices, as individuals and as a group, to let our senators and representatives know the issues about which we care, and to demonstrate that care not by threats, invectives or game-playing, but rather by embodying this care by speaking with integrity and passion.  Even if there is a member who might not agree with you or who might not be willing to join you by supporting a particular measure, I have to believe that simply showing up and representing the millions of people affected by eating disorders made a difference.  Maybe our efforts help a staffer open her or his eyes to the impact of eating disorders, or someone who has known a friend or family member who struggled who appreciates that someone else cares as much as they do, or even someone who is her- or him-self struggling and hasn’t been able to acknowledge it.  Having people who have experienced it and their families, friends, and professionals come talk to them about the importance of these issues can make a sea change in others’ attitudes and understanding about eating disorders.     

As someone who often feels like I am spending most of my time vacillating between preaching to the choir or to the proverbial brick wall, I found myself leaving my first Lobby Day with a sense of renewed hope and a reminder of why we all do what we do. And I left reminded that when you’re trying to change a lot of people’s minds by knocking on a lot of people’s doors, you have got to be patient.  I was reminded that one voice matters, as does one willing ear.  And perhaps most importantly, I was reminded that the efforts of a few impassioned people can have a disproportionate impact, which is why I’m so grateful to be able to join the Eating Disorder Coalition again at their fall Lobby Day.  I’ll be the one wearing super comfortable shoes. 

Norman H. Kim, Ph.D.

National Director

Reasons Eating Disorder Center