National Eating Disorders Association’s National Bank of Insurance Stories. It’s time to talk about it.

With enthusiasm and appreciation, the AED Advocacy and Communication Committee announces the National Eating Disorders Association’s National Bank of Insurance Stories. It’s time to talk about it.

THE PROBLEM:

We have all faced it. Lack of treatment coverage at an appropriate level of care, premature discharge, and lack of adherence to professional guidelines, are experiences patients, clinicians, and families fight daily. Access to care is a fundamental, nationwide problem that frequently exacerbates the illness, destroying lives, while placing undue financial and emotional burden on so many.

A SOLUTION:

Insured patients and their families need a voice to communicate their experiences in the pursuit of treatment. The Advocacy and Communication Committee of the Academy for Eating Disorders urgently needs your help. We applaud NEDA for the development of the National Bank of Insurance Stories. The National Bank of Insurance Stories was created to document insurance struggles patients, families, and caregivers have faced. These stories will provide evidence of the breadth of this problem, and help to raise awareness. Providing an outlet to share the stories, we can help others know what has worked and what hasn’t, as well as to unite the community against the unconscionable policies and practices of insurance companies that discriminate against eating disorders treatment.

ACTION NEEDED:

With the cooperation of NEDA, AED, EDC, BEDA, IAEDP and others, the stories of the interface between patient, family, clinicians, and insurance companies can be heard. Please, consider taking up this mission with intent and with purpose. Please, spread the word about the NEDA Bank of Insurance stories. You can help by doing the following:

1) Refer your patients, families and colleagues to the following NEDA link:

http://www.nationaleatingdisorders.org/uploads/NBIS%20eForm%20(fillable).pdf;

2) Print this document and make it easily accessible to patients and their families.

3) Forward this email to your colleagues, and encourage all to use their voice to make a difference.

4) Write letters to your local media informing them of NEDA’s National Bank of Insurance Stories.

Sincerely,

AED Advocacy and Communications Committee

NEDA Walk in Williamsburg

People from all over Virginia will join the National Eating Disorders Association (NEDA) on it's 1st annual NEDA Walk to end eating disorders on October 30, 2010. They will join thousands of walkers in cities throughout the country to raise awareness and much needed funding to provide programs and services to individuals and families affected by eating disorders.

The NEDA Walk in Williamsburg will take place on October 30, 2010 on the campus of the College of William and Mary. To find out how to register, sponsor this walk, or donate to NEDA, visit http://neda.nationaleatingdisorders.org/WilliamsburgWalk

Nearly 10 million women and 1 million men suffer from anorexia and bulimia; many million more from binge eating disorder. In the United States, eating disorders are more common than Alzheimer's disease. Despite its prevalence, there is inadequate access to quality treatment, insurance converge, and research fundings for eating disorders. NEDA's education, awareness and advocacy programs serve an invaluable purpose to those who need them. So lace up your shoes and come walk with us!

For more information about the walk in Williamsburg, please contact Emily McMillen at elmcmillen@gmail.com.

Advocates are the heart and soul of the EDC!

Advocates are the heart and soul of the EDC! You are making a difference!
A note from The Policy Director, Jeanine Cogan, Ph.D.

Dear friends,

Thanks to over 100 advocates who came from 25 different states, our recent lobby day is proving to be a huge success with additional support for the FREED Act growing every day! So far we have the following 9 new cosponsors on the House side and anticipate more.

Rep Markey, Betsy [CO]
Rep Van Hollen, Chris [MD]
Rep Holt, Rush D. [NJ]
Rep Johnson, Henry C. "Hank," Jr. [GA]
Rep Edwards, Donna F. [MD]
Rep Klein, Ron [FL]
Rep Boucher, Rick [VA]
Rep Polis, Jared [CO]
Rep Schwartz, Allyson Y. [PA]

Advocates came from CA, CO, CT, DE, FL, GA, IA, IN, LA, MA, MD, MI, MN, MO, NC, ND, NH, NJ, NY, PA, SC, TX, VA, WA, UT. And it paid off as we have new cosponsors for the FREED Act from six of those states - CO, FL, GA, MD, PA and VA.

We hear repeatedly that many Members of Congress sign onto the bill because they were touched by the constituents who visited them. Your voices are making a difference and your stories leave a lasting impression. For those of you who joined us this year or in the past - I thank you! For those who haven't lobbied with us yet - make it a priority to come next time. Not only will you help pass our bill but you also have a really unique opportunity to feel your power!

But enough from me - hear it from Nicole Griswold, an advocate who joined the EDC in April for lobby day.

"An advocate's perspective: by Nicole Griswold

I decided on a whim to join in on Lobby Day. I had been trying to find a way to positively fight back against a disease that has had so much control over me and the three friends I have lost far before I was ready to say goodbye. Lobbying for treatment, education, and research seemed to be just what the doctor ordered.

I learned while I was there that I was going to be fighting for the passing of an actual bill for eating disorders; the first of it's kind. My worries about not knowing how the government system completely works was washed away when I was greeted with open arms and a handful of tools to prepare me for the big lobby day. I was not only moved by sharing my personal story with House Representatives and Senators in order to encourage their co-sponsorship of the bill, but by the fellow lobbyers: individuals plagued by eating disorders, mothers and fathers who lost their child, educators, and clinicians.

My time lobbying continues to resonate in my heart. I am eternally grateful for the safe and encouraging fellowship from the EDC as we all worked together to fight for eating disorder awareness and eradication. I will most certainly be back!"

Join in our Post-Lobby Day Letter Writing Campaign!!

Tired of . . .
insurance companies refusing to cover your treatment?


doctors being clueless about the seriousness of your eating disorder?

teachers and coaches at school not knowing how to respond to you as you suffer from the despair of an eating disorder?

watching your daughter, son, mother, or sister struggle with an eating disorder and not be able to help?

Help us pass the FREED Act, which will change all this.

The Eating Disorder Coalition needs you!


Be part of our Letter Writing Campaign with the goal of 1000 letters to Congress!

To continue the enthusiastic advocacy generated during the Eating Disorders Coalition's biggest Lobby Day ever, we are launching our biggest Letter Writing Campaign with the goal of encouraging 1000 of you to use your voice and write a letter to Congress!

In April, Senators Harkin, Klobuchar and Franken introduced the Senate version of the FREED Act. Now that we have both a House and Senate version of the FREED Act, the time is ripe for gaining support for the bill in both chambers and your letter can help us do that! The more support we have for the bill the more likely we can achieve our goal of passing the FREED Act!

Your participation in our letter writing campaign is vital to making this happen. To take part in this simple, yet very powerful and effective opportunity, simply follow the instructions below and then encourage your friends and family to do the same. Remember: we have had Members of Congress sign onto the FREED Act because of receiving one letter from one constituent! Your letters will make a difference!


Below are step-by-step instructions for contacting both your Representative and Senators, including a separate sample letter for the House and Senate. You can use the sample letters below verbatim or tailor your letter so that it speaks from your heart, and from your specific connection to Eating Disorders (i.e., I’m a treatment provider, a mom, a friend of someone suffering, etc…). While we encourage you to share why the FREED Act is important to you specifically, we also ask that you stay consistent in the message provided in the sample letter. Your letter should be no longer than one page in length (about 5 paragraphs).


Thank you in advance for your participation in and support of our goal to have 1000 voices represented! We can pass the FREED Act with your voice, passion, and commitment.


...from Capitol Hill,
Jeanine Cogan, Ph.D., Policy Director, Eating Disorders Coalition
Kathleen MacDonald, Policy Assistant, Eating Disorders Coalition






FOR: HOUSE OF REPRESENTATIVES HERE'S HOW

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



Use the link below to find your Representative's contact information:

https://writerep.house.gov/writerep/welcome.shtml

* Second: Find Out, “Is My Representative Already a Sponsor of the FREED Act?”

Before you send a letter, FIRST please check to see if your Representative is already signed on to the FREED Act (HR 1193) as a co-sponsor! As of May 21, 2010 we have 36 co-sponsors (listed below). If your Representative is already signed onto FREED, you are encouraged to write a “Thank You” letter. In your thank you letter you can request that your Representative encourage his colleagues sign onto FREED.


COSPONSORS(36), ALPHABETICAL:



Rep Baldwin, Tammy [WI-2] - 6/11/2009
Rep Boucher, Rick [VA-9] - 5/11/2010
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 Edwards, Donna F. [MD-4] - 5/11/2010
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 Gerlach, Jim [PA-6] - 12/9/2009
Rep Gordon, Bart [TN-6] - 6/3/2009
Rep Hastings, Alcee L. [FL-23] - 9/14/2009
Rep Holt, Rush D. [NJ-12] - 4/28/2010
Rep Johnson, Henry C. "Hank," Jr. [GA-4] - 5/4/2010
Rep Klein, Ron [FL-22] - 5/11/2010
Rep LaTourette, Steven C. [OH-14] - 4/30/2009
Rep Maloney, Carolyn B. [NY-14] - 9/25/2009
Rep Markey, Betsy [CO-4] - 4/28/2010
Rep McCotter, Thaddeus G. [MI-11] - 6/3/2009
Rep Moran, James P. [VA-8] - 4/21/2009
Rep Nadler, Jerrold [NY-8] - 12/7/2009
Rep Napolitano, Grace F. [CA-38] - 6/9/2009
Rep Platts, Todd Russell [PA-19] - 5/20/2009
Rep Polis, Jared [CO-2] - 5/20/2010
Rep Ros-Lehtinen, Ileana [FL-18] - 4/30/2009
Rep Schauer, Mark H. [MI-7] - 10/14/2009
Rep Schwartz, Allyson Y. [PA-13] - 5/20/2010
Rep Sestak, Joe [PA-7] - 10/7/2009
Rep Smith, Christopher H. [NJ-4] - 3/9/2009
Rep Van Hollen, Chris [MD-8] - 4/28/2010




***for the most up-to-date list of cosponsors please visit: www.thomas.gov

and enter bill number HR 1193***

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



Use the contact information posted on your Representative’s website. Most offices allow you to email your letter directly from their website via a “webiform”. Simply paste your adapted letter and send.



* FOURTH: Please Send a Copy of Your Letter To: policyassistantEDC@yahoo.com



SAMPLE LETTER:
Your Name

Street Address

City, State, Zip

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

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 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. 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. 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 with 36 cosponsors. I ask that you sign on today as a cosponsor of the FREED Act (HR 1193) as this bill has the ability to save thousands of lives. I look forward to hearing from you soon.

Warm regards,

First and Last Name



FOR: SENATE HERE'S HOW

* First: Find Out, "Who Are My Senators?"



Use the link below to find your Senators’ contact information:

http://www.senate.gov/ --in the upper right hand corner of the page you will see an option, “find your Senators” –use the drop-down arrow to locate your State and then click on that to bring up your Senators’ contact information.

* Second: Find Out, “Is My Senator Already a Sponsor of the FREED Act?”

Before you send a letter, FIRST please check to see if your Senator is already signed on to the FREED Act (S 3260) as a co-sponsor! As of May 21, 2010 we have 3 co-sponsors (listed below). If your Senator is already signed onto FREED, you are encouraged to write a “Thank You” letter. In your thank you letter you can request that your Senator encourage his colleagues sign onto FREED.


Sen Franken, Al [MN] - 4/26/2010
Sen Klobuchar, Amy [MN] - 4/26/2010
Sen Menendez, Robert [NJ] - 4/29/2010

***for the most up-to-date list of cosponsors please visit: www.thomas.gov

and enter bill number S 3260***

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



Use the contact information posted on your Senator’s website. Most offices allow you to email your letter directly from their website via a “webiform”. Simply paste your adapted letter and send.



* FOURTH: Please Send a Copy of Your Letter To: policyassistantEDC@yahoo.com



SAMPLE LETTER:
Your Name

Street Address

City, State, Zip

Your telephone number and email address



Date



The Honorable First Name Last Name (Your Representative)

Address of Office (ie: 104 Hart Senate House Office Building)
United States Senate

Washington, DC 20510



Dear Senator____________ (last name in the blank),

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, S 3260). 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. 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. 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.

The FREED Act was introduced on April 26, 2010 by Senator Harkin. I ask that you sign on today as a cosponsor of the FREED Act (S 3260) as this bill has the ability to save thousands of lives. I look forward to hearing from you soon.

Warm regards,

First and Last Name