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  
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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.

A Dad Shares About Lobby Day

August 4, 2014
Washington, DC

Artie Fox is a Board Member of +Alliance For Eating Disorder, an +Eating Disorders Coalition advocate and perhaps most importantly, he's a dad.       Artie graciously agreed to share his thoughts about Lobby Day in this guest blog.  Thank you, Artie --your advocacy means the world to us.

A Dad Shares About Lobby Day:

My daughter has struggled with an Eating Disorder for nine years. After going through the misery of suffering and meeting other families going through the same agony, I wanted to make a difference.

I joined the Board of The Alliance for Eating Disorders in Florida, in January, 2013. At one of my first meetings, I was informed about Lobby Day in Washington, D.C.

I attended my first Lobby Day in April 2013 and found it to be an incredible experience. We, as a group, do make a difference. We meet with various congressional  leaders, discussing many issues which include the FREED Act, as well as photo shopping and how it effects families and individuals with Eating Disorders.  A big part of Lobby day is the opportunity to meet with and socialize with others from around the country. Sharing each others experiences and ideas makes Lobby day extra special for me.

My hope is that every state is represented at EDC National Lobby Day and we do effect changes with the way Eating Disorders are perceived and treated, and eliminate the stigma attached to them.

Reflections on EDC Nat'l Lobby Day

Dear friends and supporters of the Eating Disorders Coalition,

EDC Advocates --working to pass the FREED Act!

In some ways EDC National Lobby Day resembles a wedding celebration. Months and months go into preparing for one day of celebration, details are stressed over, excitement builds, and then the day you’ve been planning for is over and your friends depart and go back to their respective ‘every-day’ lives. And like a wedding, when EDC National Lobby Day is over and advocates depart, they leave with a fire in their hearts, forever changed.

National Lobby Day events began Monday with an evening reception at the Stewart Mott House on Capitol Hill. EDC President Lisa Lilenfeld welcomed EDC Advocates and invited them to enjoy food and drink as they mingled and met new advocates, as well as greeted old friends. Midway into the reception, EDC Policy Director, Jeanine Cogan, introduced the EDC’s newest Policy Team member, Al Guida from Guide Consulting. Al invited each EDC advocate to introduce themselves and also share a few words about what brought them to DC to participate in EDC National Lobby Day. The stories shared around the room were each unique, but all connected in the heartfelt dedication as each advocate described their commitment to being part of the movement that will eliminate eating disorders. We celebrated our commitment to be advocates.

April 26, 2012: EDC National Lobby Day  -- one of best yet. The day began with Basic Training where all first time advocates came together early in the morning to learn more about what it means to be a part of EDC Lobby Day, as well as to help ease ‘nerves’ that tend to come with being on the Hill for the first time.  After Basic Training, the newly trained EDC Advocates merged with veteran EDC Advocates and we melded into one large group of impassioned and powerful voices. The message we shared with Members of Congress and their staff was that: Eating Disorders are serious; There is Hope; Congress CAN make a difference! ~

We headed over to the Capitol for a group photo and then went to the Dirksen Senate Office Building for lunch and the EDC Congressional Briefing, “The Faces of Eating Disorders: Will the Real Person with an Eating Disorder Please Stand Up”. The Congressional Briefing educated Members of Congress and their staff about the fact that eating disorders do not discriminate.  They effect people of all ages, races, ethnicities, genders, classes, sexual orientations and even political parties. Speakers were: Rachel DeYoung, a biracial woman who suffered and recovered from her eating disorder; Sarah Yeung, an immigrant from Hong Kong who developed an eating disorder once she moved to the U.S.; Tracy  Smith, a mom whose daughter Reanna died while waiting for access to treatment; and Dr. Ted Weltzin who specializes in working with men and boys who suffer from eating disorders. The stories were each powerful and left an impact. After the briefing 78 individual advocates from 22 different states, headed out to meet with their Members of Congress and staff, delivering the urgent and heartfelt message that: Eating Disorders are serious; There is Hope; Congress can make a difference by passing the Federal Response to Eliminate Eating Disorders Act (FREED Act).

EDC National Lobby Day concluded with a debrief meeting, hosted by FREED Act champion Congresswoman Tammy Baldwin’s staff. At the debrief, EDC Advocates shared stories from the day’s meetings. This was a notable EDC National Lobby Day as one advocate after another shared the news that their Member of Congress agreed to sign on to the FREED Act ! The FREED Act already has three new co-sponsors (with more to come)! We heard stories of Staff Members who attended the EDC’s Congressional Briefing and were moved to tears because of the stories shared. We heard about a Member of Congress who called an EDC advocate who wasn’t able to come to the Hill for lobby day. And we even had Members of Congress tweeting about their meetings with EDC advocates! TOGETHER WE ARE MAKING AN IMPACT!

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EDC Advocate shares her FREED sign

Eventually we had to conclude our day –feet were tired, bellies were hungry, and advocates were in need of rest and reflection. After many hugs, we departed the Hill, ending another EDC National Lobby Day, forever changed. And though we are no longer in person with one another, we remain a collective voice, as afterall we are the Eating Disorders COALITION. As an individual advocate, you are a member of the Coalition and you are now part of a collective voice and movement on the Hill; you are now a part of the movement that will change policy at the Federal level –a daunting task that is only possible because of you. As a member of the Coalition, you now have a way to use your voice in an organized way that will help you fight back against the many insidious ways an eating disorder might have impacted your life. As a member of the Coalition, you are part of a family of advocates who support you, and who are here to help you make a difference in the way eating disorders are addressed in our country. Each of you is a special part of a circle of hope and action, of a meaningful and powerful coalition – and your advocacy need not end simply because EDC National Lobby Day has concluded. ~ We encourage you to stay involved with us: go to the EDC website and sign-up to receive email Action Alerts; friend us on Facebook; send in your picture with your “I stand for the FREED Act because….” signs to kmacdonald@eatingdisorderscoalition.org; ask your friends, family, your treatment team, etc. to participate in our “Phone in for FREED” campaign (details on our Facebook page)  -- There are many ways for you to continue using your energy, your passion and your voice until the next EDC National Lobby Day and we are happy to help you do so! ~  If any of you have blogged about your experiences, please feel free to share those with us by emailing kmacdonald@eatingdisorderscoalition.org ; feel free to post your reflections and your pictures on our Facebook page, etc. We encourage you to stay in touch!

This EDC National Lobby Day has left an indelible impact on our hearts. We are reinvigorated because of each of you who took time off from work and school, who spent your hard earned money, and who each gave of your heart to help make this EDC National Lobby Day one of our best yet.

PS: huge shout-out to all our volunteers who make EDC National Lobby Day possible, including our Team Leaders: Matt Wetsel, Eileen Binkley, Gail Schoenbach, Lisa Lilenfeld, Johanna Kandel, Jillian Lampert, Deb Mellk, Alan Duffy, Carmen Cool, and Lisa Hail; Our “boots on the ground” volunteers Emily Suttle and Rachel DeYoung who hand-delivered EDC Congressional Briefing invitations to every single office of the Senate! And thank you to EDC photographer Jim Knapp for taking pictures and posting them on the EDC Facebook page. (We encourage advocates to go to our Facebook page and tag yourself in pictures--please tag only yourself) https://www.facebook.com/EatingDisordersCoalition Finally, special thanks to the Stewart R. Mott House for hosting our reception http://www.srmfoundation.org/AboutUs.html 

Great Letter from Advocate

Hi everyone --below is a letter from EDC advocate Rebekkah, to her Representative (Member of Congress in the House). Please take a look at her letter to see an example of how to personalize the Eating Disorders Coalition's "sample letter". We're looking forward to receiving many more cc'd letters in our inbox. We need millions more to write in if we want to pass the FREED Act. 
Go to: http://www.eatingdisorderscoalition.org/letter-writing-campaign.htm
for information on how you can write a letter, too! ~ Thank you, the EDC


____________________________________________________________________

Dear Congressman Heck,

As a constituent of your district who has personally suffered from the living hell of an eating disorder, I am writing today to ask you to cosponsor the Federal Response to Eliminate Eating Disorders Act, (the FREED Act, H.R. 1448). The FREED Act is the first comprehensive bill in the history of Congress to address eating disorders. The FREED Act focuses on research, treatment, education and prevention of eating disorders and
serves as a beacon of hope for the millions of people in our country  currently suffering from binge eating disorder, anorexia, bulimia, and eating disorder not otherwise specified (EDNOS).

Estimates suggest that more than 11 million Americans suffer from eating disorders.  I am one of them.  I am one of those girls who lost herself, and almost her life.  More than once, I ended up in the hospital from
electrolyte imbalances and blood work that told the ER doctors that my  heart shouldn’t be beating.  More than once, I prayed and hoped that my heart would, in fact, stop beating.  And without recovery, without the
extensive treatment I had, those prayers would have been answered. 

I can write to you today because of the treatment I received.  In a month and a half I will be graduating law school, because of the treatment I  received.  Everyday I enjoy friendships and gratitude, because of the
treatment I received.  I am alive today because of the treatment I received.

Eating disorders affect every single system of the body and are associated  with serious medical complications including cardiac arrhythmia, cognitive  impairment, osteoporosis, infertility, heart failure and death. In fact,
left untreated anorexia nervosa has the highest death rate of all mental disorders, upwards of 20%. However, when a person suffering from anorexia  receives proper treatment, the death rate falls to between 2-3%.

Research demonstrates that eating disorders CAN be successfully overcome when early detection and adequate and appropriate treatment take place.  And I write to you as verification of that fact!
Unfortunately, at this point in time, eating disorders are all too often  undiagnosed or completely misdiagnosed by health professionals, and access to treatment is limited. Less than 1/2 of all people with eating disorders
receive the treatment they both need and deserve. The FREED Act will save lives by providing for better access to proper  treatment, research dollars to understand the etiology and effective  treatment of eating disorders, grant programs to ensure more medical health  professionals and school personnel be trained on eating disorders prevention and treatment, as well as PSA's to broaden awareness of eating disorders.

Currently the FREED Act has bipartisan support. I ask that you sign on today as a cosponsor of the FREED Act (HR 1448), as a cosponsor of hope, as this bill has the ability to save thousands of lives.  I have vowed to never be an eating disorder death statistic: please help ensure that same  promise, for the thousands of others who are suffering!

I look forward to hearing from you soon.

Graciously yours,   Rebekkah Beth Bodoff


picture courtesy of: photobucket.com/

Mental Illnesses a "Civil Rights Issue!"

The EDC attended a luncheon at the National Press Club in Washington DC today with mental health parity champions former Congressmen Patrick Kennedy and Jim Ramstad.  Even after leaving Congress both Ramstad and Kennedy remain passionate about ensuring the implementation of a strong Final Rule for the 2008 Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (MHPAEA) in a way that eliminates discrimination against those with mental illnesses.

EDC Policy Director & Former Congressman Jim Ramstad

The EDC was able to ask a question of the Congressmen regarding insurance tactics used to discriminate against those suffering with eating disorders. Here is a link to the video of the question and responses:
http://www.c-spanvideo.org/program/InsuranceCov
(the entire video is interesting and worth watching, but the question re: Eating Disorders is addressed beginning at: 47.58)

The two are launching Parity Field Hearings in many cities throughout the country to draw attention to the continued exclusions and inappropriate insurance denials. The EDC spoke with Kennedy directly and we will be bringing people with eating disorders who have been denied treatment to testify at these hearings.