January, 2010 ---from the Hill

Happy New Year! We hope this finds you enjoying good-health, happiness and renewed energy. Speaking of renewed energy, we’re looking forward to what 2010 will bring on the Hill with regard to health care legislation, and specifically eating disorders policies.

We are also looking forward to doing what we do best and that is creating more opportunities for each of you to use your voice as healthy and empowered advocates with the EDC! [To that end –if you haven’t already, please take a moment to sign up for the Friends and Family Action Network (FAC)**. See information on how below)].

The members of our FAC, and many other individuals from Facebook and beyond, helped end 2009 through an empowering and highly successful Action Alert! Our “November Letter Writing Campaign” sought to inspire 100 of you to write your Member of Congress, asking them to sign on as a cosponsor to the FREED Act (HR 1193).

We are happy to report that we surpassed our goal of 100 letters!

The success of more than 100 letters was not a simple undertaking and could not have happened without your support! A great deal of effort goes into encouraging people to take the time to write their Member of Congress. In this case, it was not only the EDC staff who did the encouraging - so many of YOU helped by posting our “Action Alert” on your Facebook page or by emailing your friends and family asking them to write a letter. That is true grassroots activism. Way to go!

Our November Letter Writing Campaign was a collective effort of tremendous dedication to our cause –made successful, thanks to you!

Perhaps the most exciting part of the letter-writing campaign is the result: we garnered TWO additional cosponsors so far. Representative Jerrold Nadler from New York, and Representative Jim Gerlach from Pennsylvania signed on as cosponsors on December 7^th and December 9^th, 2009, respectively. We are thrilled to see Representative Gerlach sign on, as we have had a team of citizen advocates who repeatedly met with his office during Lobby Days over the years. It is through the relationship these EDC advocates built with staff, combined with the letter-writing campaign, that led to this success.

The two new cosponsors of the FREED Act are proof that your voice DOES make a difference!

As we continue our momentum with the FREED Act and health care legislation, be on the lookout for Action Alerts, Lobby Days and other ways you can get involved with the EDC. We look forward to hearing you use your voice this year and make a difference in the way Congress addresses eating disorders. Doing so will save lives!

We also BELIEVE in and look forward to the FREED Act becoming law in 2010! With your help, we CAN do it!

From the Hill, Kathleen MacDonald, Policy Assistant

Jeanine Cogan, Policy Director

**What is the FAC? We are the citizen advocates and voices of those affected by eating disorders throughout the United States. Many of you know that the EDC is a coalition of member organizations, but did you know that the FAC is the largest group in our coalition? The FAC adds the collective voice and energy of individuals, and without your voice we would not be as powerful –especially on Lobby Days! What do FAC members do? We tell EDC what policies and legislation matter to us. FAC members answer EDC’s action alerts by writing letters and calling their Members of Congress at critical times during the Congressional year. FAC members answer calls for contributions and donations. The EDC organizes FAC advocates for Lobby Days, Congressional Briefings and other events. As we head into a new year and new legislative era, please commit to, or renew, your membership with the FAC. Your voice can make a difference! Click here to Join the FAC

Eating Disorder Organizations Join Forces to Urge Focus on Health and Lifestyle Rather Than Weight

PRESS RELEASE

December 15, 2009

Contact: Chevese Turner

chevese.turner@bedaonline.com

(410) 570-9577

Eating Disorder Organizations Join Forces to Urge Focus on Health and Lifestyle Rather Than Weight

(Severna Park, MD) December 15, 2009 - The Academy for Eating Disorders (AED), Binge Eating Disorder Association (BEDA), Eating Disorder Coalition (EDC), International Association for Eating Disorder Professionals (iaedp), and the National Eating Disorders Association (NEDA) have joined forces and are advocating together for a focus on health and lifestyle rather than weight as a measurement of well-being.

In late November, media stories reported that an American university implemented a new strategy for combating rising weights by requiring students to be weighed during their freshman year. Those deemed obese are required either to lose weight or pass an extra course focused on physical fitness. In response to this, and other similar strategies within the global "war against obesity", national and international eating disorder organizations have joined forces to recommend school administrators, employers, and health policy makers focus more on health and lifestyle for all populations rather than on weight alone.

Eating disorder groups assert that this well-intentioned, but under-informed and unproven strategy of focusing on weight fuels weight-prejudice and neglects groups which may be in equal need of improving their health and lifestyle. There is also the concern that these programs may contribute to negative self-esteem, body dissatisfaction, and eating disordered behaviors. Neither the scale nor BMI calculation provides the full picture regarding health status, such as lifestyle and activity patterns, and physical and mental health measures. Thus, assuming ill health based on weight alone is not only inappropriate but harmful and discriminatory, and should be discontinued.

"There is concern that we have lost sight of the importance of avoiding harm in the process of addressing obesity." AED President Susan Paxton, PhD, FAED states, "Further, we cannot ignore the opportunity to create a healthier environment, where people of all sizes are given the opportunity to lead healthy and productive lives, instead of singling out individual groups for reform based on weight alone".

Paxton continues, "It is our hope that professional and community societies can join hands in fighting for healthier lifestyles and increased respect for people of all sizes, thus simultaneously promoting all aspects of health (i.e., physical, social, and emotional) within our communities."

• The AED has developed "Guidelines for Obesity Prevention Programs" (http://www.aedweb.org/media/Guidelines.cfm), which are intended to address the issues illustrated by the above example, and the more global issues in combating rising weights.


• Additionally, the EDC has developed talking points regarding BMI testing (http://www.eatingdisorderscoalition.org/documents/TalkingpointsBMI.pdf).

*Academy for Eating Disorders (AED) is a global professional association committed to leadership in eating disorders research, education, treatment, and prevention. For more information go to http://www.aedweb.org/.

*Binge Eating Disorder Association (BEDA) is a national organization focusing on the need to increase prevention, diagnosis, and treatment for binge eating disorder. BEDA is committed to facilitating awareness, high quality of care, and recovery for those who live and those who work with binge eating disorder through outreach and support, education, and resources. For more information go to http://www.bedaonline.com/.

*The Eating Disorders Coalition (EDC) is a federal public policy organization that works to advance the federal recognition of eating disorders as a public health priority. For more information go to http://www.eatingdisorderscoalition.org/.

*International Association of Eating Disorder Professionals (iaedp) promotes a high level of professionalism among practitioners who treat those suffering from eating disorders by promoting ethical and professional standards, offering education and training in the field, certifying those who have met prescribed requirements, promoting public and professional awareness of eating disorders and assisting in prevention efforts. For more information go to http://www.iaedp.org/.

*The National Eating Disorders Association (NEDA) supports individuals and families affected by eating disorders, and serves as a catalyst for prevention, cures and access to quality care. The programs include a National Helpline, Annual Public Conference, Educational and Awareness Programs, sponsorship of National Eating Disorders Awareness Week, Media Watchdog Program, Parent Family and Friends Network, Young Investigator Research Grants and more. For more information go to http://www.nationaleatingdisorders.org/.

Eating Disorders Coalition Applauds the House for Approving the Affordable Health Care for America Act (HR 3962)!

The Eating Disorders Coalition applauds the U.S. House of Representatives who, in an historic vote that lasted late into the night on Saturday, November 7, 2009, approved the Affordable Health Care for America Act (H.R. 3962)!

We extend our deepest gratitude to all 220 Members of the House who voted "Aye" on HR 3962. And we offer specific thanks to our champion of the FREED Act (HR 1193), Congressman Patrick Kennedy (D-RI), and his health legislative staff, who tirelessly dedicated their energy and expertise to ensure the inclusion of Mental Health and Substance Abuse language within the Affordable Health Care for America Act.

One key aspect of HR 3962 that specifically relates to all those impacted by Eating and Body Image Disorders is the extension of mental health parity that was passed into law in 2008. Congressman Kennedy offered these remarks underscoring the significance of the inclusion of Mental Health and Substance Abuse language in this historic Bill (HR 3962): "A key aspect of this legislation that is of particular importance to me is the extension of the mental health parity protections established into law last year by my legislation, the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act. Not only are these protections extended to all plans in the Health Insurance Exchange, but mental health and substance use benefits are a part of the essential benefits package created by this legislation. For 67% of adults and 80% of children needing mental health care that do not receive it, this victory cannot be understated. I commend my colleagues and my fellow citizens for their leadership in recognizing that the health of the mind truly cannot be separated from the health of the body." The Congressman also voiced his commitment to work with the Senate as they come to the point of introducing healthcare reform legislation, "to ensure that these critical provisions are retained" (in the Senate bill).

Not only did Jeanine Cogan, our Policy Director, work closely with staffers from various offices during the process of healthcare reform being legislated on both sides of the Hill, but so too did many of you join us for our September Lobby Day to advocate for both the FREED Act (HR 1193) and in support of a health care reform bill that included provisions for mental health and substance abuse! Your voices helped increase support for the goals outlined by Congressman Kennedy and his late father, Senator Edward M. Kennedy: to ensure guaranteed coverage for treatment for mental health and substance abuse in the essential benefits package! It was in using your voice on Lobby Day that helped raise awareness with key offices for the need of a healthcare reform bill that would save rather than threaten lives by eliminating coverage denial for pre-existing conditions, eliminate limits of lifetime dollars on what insurers will pay, and also for lowering costs for preventative care and negating rate increases for pre-existing conditions. Perhaps most importantly, your advocacy on Lobby Day helped garner support of a bill that encourages doctors to make health care decisions rather than insurance companies making decisions about what care is necessary!

The fact that we were able to actually get meetings with staffers and Members of Congress during a very healthcare reform focused, and somewhat chaotic time, on the Hill speaks volumes towards underscoring the positive reputation that the Eating Disorders Coalition has established over the past nine years. From meeting with Members of Congress and their staff, building relationships, and continuing to raise awareness of eating disorders through our dedicated advocacy based on our mission statement, we have become the known voice on the Hill on the topic of eating disorders, including in relation to obesity initiatives. We offer our deepest gratitude to each of you who have supported our mission, especially our Lobby Day efforts, and we look forward to continuing our advocacy efforts with you in the future.

While the Affordable Health Care for America Act lends valuable outlines for the treatment of those affected by mental health and substance abuse, there is still work to be done for those impacted by eating and body image disorders. And we need your help to further the FREED Act in both the House and Senate. One very simple step you can take is to join in the forward momentum on the FREED Act by participating in our November Letter Writing Campaign! To find out how you can join in, please go to: http://www.eatingdisorderscoalition.org/LetterWritingCampaign2009.htm

Finally, I want to acknowledge that the next step in healthcare reform does now rest with the Senate. The Eating Disorders Coalition employs hope that both Chambers will come to a timely and the best decision for the millions of Americans who currently live with disparate coverage, unaffordable coverage, or worse, without any health insurance coverage at all. We hold onto the hope that the late Senator Edward M. Kennedy expressed so beautifully in his article published with Newsweek magazine (July 27, 2009), "Every American should be able to get the same treatment that U.S. Senators are entitled to... This is the cause of my life. It is a key reason I defied my illness last summer to speak at the Democratic convention in December…to make sure, as I said, “that we break the old gridlock and guarantee that every American…will have decent, quality health care as a fundamental right and not just a privilege.” ~ What an awesome vision!

On that note, I'm off to the Hill to advocate for the FREED Act, filled with hope that we will see the FREED Act passed into law! Afterall, it is the right thing to do!

Kindly,

Your Policy Assistant, Kathleen

Your voice is needed for our letter writing campaign to be a success: Be One of 100 Constituents to Write their Members of Congress!

Be one of the first 100 constituents to actively support the FREED Act (HR 1193) when you join us in our November Letter-Writing Campaign!

Between Tuesday November 3rd and Tuesday, November 17th, our goal is to have at least 100 constituents write letters to their Members of Congress urging them to sign on as a cosponsor to the FREED Act! This is a simple, yet very powerful and effective opportunity for you to use your voice to support the FREED Act. We have had Members of Congress sign onto the FREED Act because of receiving one letter from a constituent --your voice CAN make a difference!

We've outlined the "how to's" below for your convenience. We encourage you to follow the letter format below, but also encourage you to tailor it so that it speaks from your specific connection to Eating Disorders.

Thank you for your support in our November Letter-Writing Campaign! We could not do this without your voice, passion, and commitment to the cause!

...from the Hill,
Jeanine Cogan, Policy Director
Kathleen MacDonald, Policy Assistant


HERE'S HOW:

First:
Find Out, "Who Is My Representative?"

Use this link to find your Representative's information:
https://forms.house.gov/wyr/welcome.shtml

Before you send a letter, FIRST you need to check to see if your Representative is already signed on to the FREED Act (HR 1193) as a co-sponsor! We currently have 25 co-sponsors (listed below). If your Representative is already signed on, you are more than welcome to (and encouraged to) modify the letter into a Thank You letter. If you have any questions, please feel free to contact Kathleen: policyassistantEDC@yahoo.com.

Rep Baldwin, Tammy [WI-2] - 6/11/2009
Rep Burton, Dan [IN-5] - 2/26/2009
Rep Capps, Lois [CA-23] - 6/9/2009
Rep Carnahan, Russ [MO-3] - 5/12/2009
Rep Clay, Wm. Lacy [MO-1] - 10/8/2009
Rep Cohen, Steve [TN-9] - 7/22/2009
Rep Connolly, Gerald E. "Gerry" [VA-11] - 4/29/2009
Rep Conyers, John, Jr. [MI-14] - 5/21/2009
Rep Courtney, Joe [CT-2] - 2/25/2009
Rep DeGette, Diana [CO-1] - 5/5/2009
Rep Ellison, Keith [MN-5] - 9/25/2009
Rep Emerson, Jo Ann [MO-8] - 4/2/2009
Rep Fattah, Chaka [PA-2] - 9/8/2009
Rep Gordon, Bart [TN-6] - 6/3/2009
Rep Hastings, Alcee L. [FL-23] - 9/14/2009
Rep LaTourette, Steven C. [OH-14] - 4/30/2009
Rep Maloney, Carolyn B. [NY-14] - 9/25/2009
Rep McCotter, Thaddeus G. [MI-11] - 6/3/2009
Rep Moran, James P. [VA-8] - 4/21/2009
Rep Napolitano, Grace F. [CA-38] - 6/9/2009
Rep Platts, Todd Russell [PA-19] - 5/20/2009
Rep Ros-Lehtinen, Ileana [FL-18] - 4/30/2009
Rep Schauer, Mark H. [MI-7] - 10/14/2009
Rep Sestak, Joe [PA-7] - 10/7/2009
Rep Smith, Christopher H. [NJ-4] - 3/9/2009


Second:
Find Out, "To Whom Do I Send My Letter?"

Use the contact information posted on your representatives' website. Most offices allow you to email your letter directly from their website. Cut and paste your adapted letter from below into their email. Then send. Third:Compose Your Letter Using the Sample Letter Below as a Guide AND make sure to "cc" on your email: manager@eatingdisorderscoalition.org AND policyassistantEDC@yahoo.com

Make sure to address your letter appropriately by writing it to either Congresswoman or Congressman depending on who she or he is.

SAMPLE LETTER:

Your Name
Street Address
City, State, Zip
telephone number and email address

Date

The Honorable First Name Last Name (Your Representative)
Address of Office (ie: 104 Longworth House Office Building)
United States House of Representatives
Washington, DC 20515

Dear Congressman/Congresswoman____________ (last name in the blank)

As a member of the Eating Disorders Coalition and as a constituent of your district who has personally been impacted by eating disorders, I am writing today to ask you to cosponsor the Federal Response to Eliminate Eating Disorders Act, (the FREED Act, H.R. 1193). The FREED Act is the first comprehensive eating disorders bill in the history of Congress. The bill 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).

At lowest estimate, 9 million American women and 1 million American men suffer from anorexia, bulimia, and EDNOS. It is estimated that between 2-5% of the American population suffers with binge eating disorder. 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, at upwards of 20%. However, when a person suffering from anorexia receives proper treatment, the death rate falls to between just 2-3%.
Research demonstrates that eating disorders CAN be successfully overcome when early detection and adequate and appropriate treatment take place. 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 better 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 with 25 cosponors. I want to urge you to also sign on as a cosponsor of the FREED Act (HR 1193) today. The FREED Act would have significantly changed my life and could have saved thousands of lives before now. I look forward to hearing from you soon.

Warm regards,

(Your Name)

What Lobby Day Meant to Me

Eating Disorders have been a part of my life since I was born, I just didn’t know it yet. It seems unfathomable that something so pervasive in every day life is hardly talked about and rarely taken seriously. So many people have laughed at the words ‘eating disorders’: the media, my family, my friends, my teachers, my government… everyone. Those words weren’t funny anymore when my best friend lost about twenty pounds in two weeks. Those words hit me like a train when I walked in, her hand was down her throat, and blood was splattered along the porcelain toilet bowl. Something was wrong with this picture, how could such a beautiful girl, whom I’ve know my entire life, whom I have loved and cared for do something so terrible to herself? That’s when I decided it was time for me to make a difference and joining Boulder Youth Body Alliance (BYBA) was my key. With BYBA I feel empowered. I can make a difference in my community, but the D.C. Lobby Trip gave me a chance to change millions of lives, going straight through our government.

It didn’t hit me what we were really doing in D.C. until the initial training day. The people there have really been affected by eating disorders. Some of the people there have been denied treatment for fifteen years; others had been through successful treatment and had recovered, while others have lost loved ones. So what were we? A group of teenagers who were ‘out to change the world’. We were sure no one would take us seriously. When confessing my fears to one of the amazing people at that training day she said something like, “It doesn’t matter what you’ve been through, it only matters how passionate you are about the cause.” Those few words changed my life. I knew that what I said to Rep. Jared Polis mattered just as much as what anyone else had to say and that is the beauty of the lobby day. Instead of the idea that we can make a difference, we were making a difference. Each one of us was fighting for something we truly believed in by talking to people who can change our country. That made me never want to stop fighting. Coming back to our small Boulder community, I knew that everything that we’ve done is not a waste of time and we have changed people’s lives, if not our own.

2009 Advocate
Anika Suddath

Lobby Day: From a First-Time Advocate's Perspective

Lobbying on the hill this September 24, 2009 was definitely an experience that I will never forget and one that I’m proud to say that I was a part of. When I first heard about the Eating Disorder Coalition I was disappointed I wasn’t going to be able to participate in the lobbying day in April of 2009 but told myself I would be there for the next one and I was. I jumped with joy from my seat upon registering for the September lobby day but didn’t prepare myself for the agonizing battle of thoughts that soon followed. Despite my extreme enthusiasm for the upcoming day, my lack of self esteem, excessive self doubt and the controlling and abusive eating disorder thoughts began arguing that I wasn’t good enough to do such an honorable act. I started to fret about everything from what I would say, to how I would say it, to if I would make a fool of myself by saying something wrong and get banned from the hill or create problems for the EDC. I even began searching my closet for what to wear so that I would be taken seriously and not get laughed at. I sought reassurance from my boyfriend, family and friends that my list of fears wouldn’t come true and asked them to help me convince myself that it would in fact be a motivating experience. Today I can say with complete honesty that it truly was a motivating experience and I’m glad I didn’t allow my fears to steal that opportunity from me. It has always been my dream to give back to the eating disorder community that has helped me reach my own recovery and it was almost as if my eating disorder felt threatened by that idea and began showering my mind with negative thoughts. Unfortunately for ED, I know how to combat those thoughts now and live my life. I may have walked up the stairs to the House of Representatives with apprehension but I walked down them with confidence.

I didn’t know what to expect going into the day and was put at ease with the help of the members of the EDC, group leaders and even the other first time lobbyists. The training sessions and informational meetings prior to lobbying were helpful to understand how to effectively lobby and what it all entailed. We were able to role play sitting with the representatives and congressmen to clarify what we were going to say and how the meeting would operate. Being from Minnesota, my group leader was Kitty Westin and she fulfilled her duty and beyond by providing each of us a complete schedule of meetings and even a little background on each of the representatives and congressmen we were meeting with. This not only helped to ease my anxiety about where I was going but also helped with adjusting the main points I’d be making during the meeting. Kitty was very encouraging and made sure that each of us felt prepared in what we were going to say and the reactions that we might encounter. Fortunately, the responses we received in each of the meetings were positive for the most part. We were even able to convince Keith Ellison to co-sponsor the FREED Act before leaving his office. To see that kind of response and know that your words are truly making an impact, really clarifies what it is that you are lobbying for.

It was an emotional day and yet I don't think that I would change anything about it. I know for myself just being with the participants and listening to the stories being told really re-enforced why it is that I am working so hard on a day to day, moment to moment basis to remain in recovery. I truly feel lucky to be alive today because I was able to receive treatment for my eating disorder and I want to use that and fight for those that don't have that opportunity and also build a strong recovery so that I too can share my hope with those that are battling. I know that recovery is possible and worth it after seeing and hearing so many stories. Every time I hear that darn little voice in my head telling me not follow my meal plan or to work the food off through exercise or lie about what I did/did not eat, I think about all those that I have met who have reached that euphoric state of recovery and about fighting for those who are still battling because they don't have access to proper treatment. I know that I can do it because I've already proved the doctors wrong when they told me I wouldn't live to see my 20th birthday, drive a car or go away to college. It may have taken me 14 years to reach this point but I know that I have many more than that in my future and I'm going to make the best of them including lobbying until there is finally equality in the system!

Update on Parity Regulations

Dear EDC friends,

Thank you to all who called their Senators and Representatives urging them to sign a letter that puts pressure on federal agencies to promulgate the mental health parity regulations. We had more than 120 people call to weigh in on this issue. Because of this and similar grassroots efforts Sen. Franken (D-MN) was joined by 25 Senators in sending the letter to the Agencies asking them to promulgate the regulations in a timely fashion and according to Congressional intent. Rep. Kennedy (D-RI) was joined by 71 Members of Congress in sending a similar letter. This is a great showing of Congressional support - thanks for making it happen! While regulations have not yet been released by the Departments of Labor (DOL), Health and Human Services (HHS) and Treasury, we expect they will release interim final regulations by January 1, 2010. HHS Secretary Sebelius's response to the Congressional letters are attached.

Click here to read Secretary Sebelius's response to Representative Kennedy
Click here to read Secretary Sebelius's response to Senator Franken

As you may know, October 3, 2009 marked the one year anniversary of the enactment of the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act. Thanks to the tireless work of the EDC and other advocates around the country, one short year later we have built upon our parity victory by including mental health and addictive disorder benefits in every key health care reform bill pending in Congress. We are furthering this success by working with key members and staff to ensure that coverage for eating disorders treatment specifically will be included in any health care bill that passes out of Congress this year.

We will keep you informed! Thanks to everyone who has participated in grassroots advocacy to support our success here on the Hill!

In gratitude, Jeanine Cogan, EDC Policy Director