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.

One Week Ago Today

Debra Schlesinger, Nicole's mom and Founder of Mothers Against Eating Disorders (MAED)

Dear friends:

One week ago today, many of you were here in Washington, DC, on the West Lawn of the Capitol, standing in the midst of countless advocates, moms, friends, family, providers, treatment centers, virtual Marchers/advocates...

One week ago today, though we stood beneath the Capitol Dome, the dome did not cast a shadow on us. No, in fact WE were the ones who cast our shadow over the Capitol Dome. We cast our shadow of united voices, power, strength, hope, passion, resilience, hands clapping, hearts breaking, tears falling, arms hugging, and butterflies flying...

One week ago today, we stood together because we know that together we will not fall apart. Together, we know our message that, "Eating disorders are serious, there IS hope and Congress CAN make a difference!" WILL be heard. Our message WILL resound from beneath the Capitol Dome through the Halls of Congress, and it WILL be heard by the President...

One week ago today, we joined together to combat the deadliest of all mental illnesses, the insidious monster we call "eating disorder." We wept as we cried out, "NO MORE GREEN SHIRTS!"...
...
 
Soon, "one week ago today" will turn into one month ago today, two months, six months... But I believe this without a doubt: We will not lose conviction. We will not diminish our call to action. We will not give up. We WILL continue our advocacy. We WILL continue to educate Congress. We WILL continue to do every single thing we can to ensure "no more green shirts!" at the next March. And we WILL, one month from now, two months from now, six months from now...we will still remember the emotions that came when hugging each other for the first time; we will still tell ED, just as forcefully as one week ago, to, "Get Back!"; we will still well-up with tears when we hear Wind Beneath My Wings; we will still call up a strength within us to USE OUR VOICE and make a difference; we will still stand together until legislation passes; and we will still remember making history, together, one week ago today.

Thank you so very much for coming to DC, for Marching, for Lobbying... I am a better person, and Policy Director, for having met you and walking this journey with you by my side.

Our work continues, together. ~Kathleen

EDC National Lobby Day, October 1, 2014

Why I Am Joining the M.O.M. March

Kitty Westin

I was speaking to a reporter yesterday and when he asked why I was joining the M.O.M. March these words came from somewhere deep within: “I think I am seen as the Grandmother of the movement. I am humbled to join with other mom’s, family members, sufferers, and others who are united in our fight against eating disorders.  I have been using my voice for nearly 15 years and it has always been my dream to bring our collective voices and march in DC!”  I cannot wait to send the message to Congress that our voices will be heard, we will not go away until they are heard and we have patience and persistence beyond their wildest imagination.

 

Anna Selina Westin

I march for my Anna, who died from an eating disorder on February 17, 2000, and for the millions of people affected by eating disorders who cannot join us in Washington DC.  I feel it is my responsibility to be Anna’s voice and she left me with instructions to never let her (or my) voice die.  Anna was wise, thoughtful, compassionate and insistent that her voice and the fight against eating disorders live on.  She had no energy left to fight but she challenged me (and all of us) to continue battling until the war is won.

 

On September 30, 2014 we will unite our voices and we will send a powerful message to Congress that eating disorders deserve national attention!

written by: Kitty Westin

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.

Who My Daughters Will Become: Reflections on Lobby Day, Advocacy, and Motherhood

Liz and her daughter Genevieve 

by Liz Neaton

Though I had spent several years working in politics in Washington, D.C., the first day I walked into the office of Representative Keith Ellison (D-Minn) for The Eating Disorder Coalition’s (EDC) Lobby Day, I felt like I truly had the ability to make a difference.

I started participating in Lobby Day in 2009. At that time, I never knew just how much it would change me. That year, I heard compelling stories of both recovery and loss with eating disorders.

Loss… that resonated with me.

I had never met anyone who had lost someone to an eating disorder. Here I was, just starting out in my own journey of recovery from the monsters of Anorexia Nervosa and Bulimia Nervosa that had plagued me for the past fourteen years. This was exactly what I needed to hear and it was exactly the moment I needed to hear it.

That first Lobby Day renewed my dedication to recovery. I didn’t want to be another name that was lost to an eating disorder. I didn’t want my parents standing at the podium during a congressional briefing telling my story with tear-filled eyes.

After that year, Lobby Day was like a magnet that sucked me in. Each time, I heard compelling stories of individual trials and tribulations with one common theme: eating disorders lack proper funding, education and access to treatment. A fire was lit underneath me at Lobby Day. I started speaking about my own journey to recovery at high schools, colleges and civic groups. I started contacting my legislative officials on at the local, state and federal level to inform them of the lack of proper funding, education and treatment of eating disorders.

Then, in 2011, I had a daughter of my own – Genevieve. As a single mother, I knew that I needed a safety net if anything should ever happen to me. So, I attempted to get life insurance. I was denied seven times. I’ve kept every denial letter and they all say the same thing: “denial based on history of depression, anxiety and an eating disorder.” Even though I was in a strong recovery program, my past eating disorder was following me. Now it was not just affecting me; it was affecting my daughter. When my daughter was six months old, I brought her with me to Lobby Day. I thought that I should start her advocacy career young. To this day l believe she is the youngest to advocate for the Federal Response to Eliminate Eating Disorders (FREED) Act and eating disorder legislation with the EDC.

Since 2011, I’ve had another daughter. That’s why this upcoming Lobby Day and the March Against Eating Disorders are both so important. 

When I look at my daughters, I see their beauty and potential.

I think about who they will become.

I encourage them and remind them that they can do anything.

Most importantly, I tell them they are beautiful every day. I write it on the mirror so it is the first thing they see in the morning. The last thing I want is for my daughters to endure the struggle I had endured for fourteen years. I want them to love their bodies and realize how perfectly created they are. I don’t have a crystal ball and I can’t say for sure that one of my daughters won’t develop an eating disorder. I can’t say for sure they will love their bodies. In fact, the statistics are against me. But I can show them through my tireless advocacy and, most importantly, by my example that their beauty and worth does not come from anything outside of themselves. Their beauty is from the simple fact that they are alive. They are present and they are able to live their lives. I will continue to come to Lobby Days until we never have to hear the words “eating disorder.” Until no more lives are lost to this terrible disease. Until proper treatment, funding and education are implemented.

I hope you’ll join me in September!

The EDC's youngest advocate joins EDC staff
in the House of Representatives.

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!!!

Congratulations Kantor & Kantor!!

August 21, 2014
Washington, DC
by Kathleen MacDonald, Policy & Communications Director, Eating Disorders Coalition

The +Eating Disorders Coalition offers huge congratulations to +Kantor & Kantor, LLP for their most recent success in fighting back against an insurance company's wrongful denial of benefits for an eating disordered patient, Ms. Jones*.

On January 7, 2014, Kantor & Kantor attorneys Elizabeth Green, Lisa Kantor and Peter Sessions appealed to the United States Court of Appeals for the Ninth Circuit Court on behalf of Pacific Shores Hospital ("PSH").  On August 20, 2014, Judge William A. Fletcher issued his opinion that reversed the original district court's judgment, a baffling judgment that sided with United Behavioral Health; Wells Fargo & Company Health Plan ("UBH").  For Jones' treatment, Judge Fletcher opined, "We conclude that UBH abused its discretion in refusing to pay for the these days of treatment."

Judge Fletcher went on to boldly call out UBH's Drs. Barnard, Center and Zucker for their several wrongdoings in and mishandling of the patient's (Ms. Jones) benefits for treatment, stating, "Fiduciaries must discharge their duties "with the care, skill, prudence, and diligence under the circumstances then prevailing that a prudent man acting in a like capacity and familiar with such matter would use in the conduct of an enterprise of a like character and with like aims."  "UBH fell far short of fulfilling its fiduciary duty to Jones. Dr. Zucker, UBH's primary decisionmaker, made a number of critical factual errors.  Dr. Center, as an ostensibly independent evaluator, made additional critical factual errors.  Dr. Barnard, UBH's final decisionmaker, stated that he arrived at his decision to deny benefits "after fully investigating the substance of the appeal."  He then rubber-stamped Dr. Center's conclusions.  There was a striking lack of care by Drs. Zucker Center and Barnard."

I had the privilege and honor of watching Elizabeth Green argue this case at the district court level. Elizabeth's thorough knowledge of the case, and of the patient's suffering and the complexity of her illnesses, is a standard that every insurance company and insurance company decisionmaker would be wise to measure themselves against, and emulate.

The persistence of Kantor & Kantor and the wisdom of the Ninth Circuit Court proves once again that insurance companies cannot continue to wrongfully deny benefits and expect to get away with it, sans consequence.  And I also believe that this opinion proves that good always trumps evil --even if it takes a little bit of time for good to prevail.

The entire opinion** can be read here: http://cdn.ca9.uscourts.gov/datastore/opinions/2014/08/20/12-55210.pdf 



*The patient's name has been changed to protect her privacy
**I urge caution that if you are someone who is "triggered' by behaviors and numbers such as weight or BMI, you might not want to read the opinion as Ms. Jones' case is described in detail.