Friday, November 19, 2010

Great News for People w/ED but w/No Insurance!


If you do not have insurance because of a pre-existing illness - you can now apply for insurance that would cover eating disorder treatment. READ MORE!

The EDC is collaborating with the Office of Consumer Information and Insurance Oversight at the Department of Health and Human Services on the successful implementation of the health care reform law, the Patient Protection and Affordable Care Act (ACA). We want to connect people suffering from eating disorders who meet the eligibility requirements to a new insurance.

One provision of the ACA that is now in effect and has promise for people with eating disorders is the Pre-Existing Condition Insurance Plan (PCIP). The PCIP was created to make health insurance available to those who have been denied insurance due to a pre-existing condition. The Pre-Existing Condition Insurance Plan:

* Offers coverage of mental health services including eating disorders as a required benefit.
* Will cover a broad range of health benefits, including primary and specialty care, hospital care, in and out-patient services, and residential treatment.
* Doesn’t charge you a higher premium just because of your medical condition.


To be eligible for the Pre-Existing Condition Insurance Plan (PCIP):

1. You must be a citizen or national of the United States or lawfully present in the United States.

2. You must have been uninsured for at least the last six months.

3. You must have had a problem getting insurance due to a pre-existing condition.

To be approved, you must submit a complete application with all required documentation, including proof of citizenship and a copy of a health insurance denial notification dated within the last six months.

Some states are running their own PCIP while the others are run by the federal government. ALL PCIP’s are required through regulation to cover eating disorders as part of the mental health benefit. However, the state run programs have the option to put a lifetime cap on mental health services for PCIP enrollees. This will vary state by state. In addition, the scope of coverage for the mental health benefit varies by state.

Under the federal-run program, there is not an option to cap the mental health benefit. The following states are the federally run programs:

Alabama | Arizona | D.C. | Delaware | Florida | Georgia | Hawaii | Idaho | Indiana | Kentucky | Louisiana | Massachusetts | Minnesota | Mississippi | North Dakota | Nebraska | Nevada | South Carolina | Tennessee | Texas | Vermont | Virginia | West Virginia | Wyoming

For more information, rates, and application for the federal-run programs go to the Health and Human Services website at

To apply for a state-run program go to: and click on your state. At that point, state-specific contact information and coverage information (including rates) will appear.

Jeanine Cogan, Ph.D. Policy Director

Wednesday, November 3, 2010

Exciting Announcement re: Office of the First Lady & Eating Disorders

Below is a very exciting email announcement that EDC Policy Director, Jeanine Cogan, sent to the organizations who supported the letter to the Office of the First Lady addressing Eating Disorders. ~

Dear Friends,

Thank you again for supporting the EDC's work with Congress to influence Michelle Obama's campaign on childhood obesity. The Congressional letter urging the "Let's Move" campaign to expand its message to also address eating disorders was signed by 35 Members of Congress and had the support of 30 organizations. Most bills in Congress do not even have 35 cosponsors nor do they have so much active support by organizations, so this is an accomplishment.

And the letter had impact. We are happy to inform you that Congressman Alcee Hastings' office - who initiated this letter - received a response from the Office of the First Lady that the "Let's Move!" campaign would be adding eating disorder information in selected places on the "Let's Move!" web site, and that they would expand their message to include information about eating disorders as appropriate.

The web changes are currently in process (though not up yet). The EDC will continue to work with Congressman Hastings' office and hope to further influence this process.

As a field we have a long way to go to ensure that eating disorders are taken seriously, addressed appropriately, and understood. Thank you for the work you and your organization does to reach these goals. Efforts like this letter make a difference. Every success moves us forward! Thank you for endorsing it!

See a copy of the delivered letter below.

In gratitude,

Jeanine Cogan, Ph.D.
Policy Director
Eating Disorders Coalition

July 21, 2010

The First Lady of the United States

The White House
441 G Street, NW
Washington, DC 20500

Dear First Lady Michelle Obama,

Thank you for championing the health and welfare of our nation’s children through the Let’s Move Campaign. Let’s Move has brought historic attention to the importance of addressing one the most serious public health concerns of today. Although we applaud that you mentioned eating disorders during a recent Let’s Move event, we believe that broadening Let’s Move’s focus to include information about eating disorders would enhance the campaign’s mission to improve the mental and physical health of all children.

We understand that obesity and eating disorders have distinct health impacts, and believe that the prevalence of these disorders indicates the need for comprehensive and well-coordinated interventions that support healthier habits and environments. Like obesity, unhealthy weight loss measures, anorexia nervosa, bulimia nervosa, binge eating and eating disorders not otherwise specified (EDNOS) have increased significantly over the past few decades. In fact, more than 11 million men, women and children suffer from an eating disorder in the United States.

In a speech that publicly introduced the Let’s Move Campaign, you stated that unhealthy diets and habits can negatively influence physical, emotional and educational development and well-being. Eating disorders are no exception. The Centers for Disease Control and Prevention (CDC) found that undernourishment impacts a student’s ability to excel academically, and suicide, anxiety and depression are more common in people with eating disorders. Eating disorders also have the highest mortality rate of all mental illnesses, and can result in long-term health issues including heart and kidney failure, cognitive impairment, muscle atrophy and sudden death.

Like obesity, eating disorders afflict children of different ages, genders, economic backgrounds, and ethnicities. At least 30-40 percent of junior high students have reported dieting, over half of high-school girls have reported dieting, and 25 percent of bulimia and anorexia cases are men. What’s more, student athletes can be especially vulnerable to eating disorders because some adopt unhealthy dietary restrictions and weight loss methods to achieve or maintain a certain weight for competition. Many obese individuals resort to unhealthy weight loss tactics and may develop eating disorders in an attempt to achieve a desired weight or body image.
Strong environmental, cultural, social factors have contributed to the high rates of obesity and eating disorders in the United States. Stigma, blame and misinformation often accompany these conditions. Coordinated efforts among educators, elected officials, parents, community leaders and young people are crucial to executing sustainable solutions to these public health problems. We believe that the Let’s Move Campaign’s mission is compatible with messages and interventions that are designed to address eating disorders.

Educators could incorporate information about unhealthy dieting when providing information about healthy food choices. Speeches and parental toolkits could include information about risks, signs and support networks for eating disorders. Let’s Move programs could be designed to teach children to respect body size diversity, promote self esteem, and support body satisfaction. And, the Let’s Move Web site could include a link to the Office of Women’s Health Web site which has comprehensive and evidence based information on eating disorders.

The unprecedented leadership in the battle against obesity through the Let’s Move Campaign shows your commitment to creatively and aggressively improving the health of children, families and communities. We hope that you will take our suggestions into consideration so that the Let’s Move Campaign can take a more holistic approach to addressing the full spectrum of behaviors that are compromising the health of America’s children.


Alcee L. Hastings and 34 Members of Congress as listed below:

Signees (34): Reprentatives Arcuri, Baldwin, Bishop (GA), Capps, Christensen, Conyers, Courtney, Deutch, Djou, Edwards (MD), Frank, Franks, Ellison, Grijalva, Hodes, Holden, Kennedy, Kildee, Kilpatrick, Langevin, Loebsack, Meek (FL), Maloney, Myrick, Napolitano, Norton, Pascrell, Price (NC), Roe (TN), Shea-Porter, Schwartz, Towns, Wasserman Schultz, and Watson

This letter is supported by the following organizations (30): Alliance for Eating Disorders, American Academy of Child and Adolescent Psychiatry, Academy for Eating Disorders, A Chance to Heal, American Dance Therapy Association, American Group Psychotherapy Association, Anxiety Disorders Association of America, Avalon Hills Residential Eating Disorder Programs, Binge Eating Disorders Association, Cedar Associates, Center for Eating Disorders at Sheppard Pratt, Clinical Social Work Association, Eating Disorders Coalition,, The Emily Program, F.E.A.S.T., Gail R. Schoenbach FREED Foundation, Gurze Books, Maudsley Parents, Mental Health America, MentorCONNECT, Monte Nido Treatment Center, Multi-Services Eating Disorder Association, National Association of Anorexia Nervosa and Associated Eating Disorders, National Eating Disorders Association, Pennsylvania Education Network for Eating Disorders, Renfrew Center, School Social Work Association of America, The Alliance for Eating Disorders Awareness, and The Emily Program Foundation

Highlights from September's Congressional Briefing

"I've been to every single EDC Congressional Briefing, and this was the best one yet!" ~ That is one of the many compliments we received for September's Congressional Briefing, "The Federal Response to Eliminate Eating Disorders Act: How Congress Will Save Lives By Passing this Bill" hosted by Senator Tom Harkin (D-IA). The room was packed with standing room only. EDC Advocates in the audience reported that the Congressional staffers presented were "moved" and "took vigorous notes" throughout the briefing. This is impressive because Congress was set to depart the Hill that very day --yet these staffers made time to attend the EDC's briefing to learn more about the FREED Act.

The first speaker of the afternoon was Jillian Croll, PhD, RD, MPH, Director, Communications, Outreach, and Research of The Emily Program. Her talk was titled, "Expanding our Understanding of Eating Disorders through Research". Dr. Croll highlighted the need for expanded research funding and opportunities. "Clearly, there is much more to know about eating disorders. Finding solutions to these challenges is imperative. Some of the things we don’t know about eating disorders are severely impacting, and killing, people.” Dr. Croll described the personal impact that the FREED Act's research section will have on families and individuals affected by eating disorders when she told the story of "Julie". "Julie was a kind and gentle person; a therapist who worked with young people; with a gift for connecting with people. She was closely connected to her mom, dad, sister and brother-in-law. Julie died on January 7, 2010, at the age of 31, after a 7 year battle with an eating disorder." Dr. Croll continued, "At a lunch with her parents last week, I was struck by how many barriers they and Julie faced in the pursuit of care for her eating disorder. Uninformed physicians, difficulty accessing treatment due to lack of specialized care, and insufficient and ineffective treatment when she was finally able to access something. ...We must identify even more effective methods of treating eating disorders and find the most efficient and practical ways to provide those treatments. Furthermore, we need to make it easier for individuals with eating disorders and their families to find reputable and effective treatments." Dr. Croll closed her speech with a very powerful message: " Passing the FREED Act is a tangible, viable step towards greater understanding and action that will yield life-improving and life-saving results. Every step we take towards knowing more helps us to prevent more unnecessary, intolerable losses like Julie and her family have had to endure."

The second speaker was Wendy Oliver-Pyatt, MD, FAED, CED, Founder and Executive Director of Oliver-Pyatt Centers. Dr. Oliver-Pyatt 's talk was entitled "How Obesity Prevention Can Trigger Eating Disorders: Why We Need to Address Both in Tandem". The central message of her speech was, “It is important that special care be taken in the construction and implementation of “obesity prevention” programs to minimize any harm that might result.” Dr. Oliver-Pyatt discussed the widely-accepted recommendations made by the Academy of Eating Disorders in relation to obesity prevention, such as: “Interventions should focus on health, not weight…” and, “It is unrealistic to expect all children to fit into the “normal weight” category. Thus, interventions should not be marketed as “obesity prevention.” Rather, interventions should be referred to as “health promotion…” Dr. Oliver-Pyatt concluded by saying, “We need to implement a plan that is scientifically driven, and that will not cause harm.”

Chevese Turner, Founder and CEO of the Binge Eating Disorder Association, spoke next. Her talk titled, “Bringing Binge Eating Disorder into the Light: A Personal Perspective” held a captive audience as she candidly shared her struggles with BED –Binge Eating Disorder. Ms. Tuner highlighted the connection between BED and Obesity, “Binge eating disorder represents the greatest number of individuals with an eating disorder. In fact, 1 in every 35 US adults is affected and 70% of those with the disorder are considered overweight or obese.” In closing, Ms. Turner spoke of the “joy” that she discovered when she received proper treatment. “After several years, I once again sought treatment. My new therapist diagnosed me with “binge eating disorder.” I cannot convey the liberation I felt. The distress and preoccupation with food actually had a name. I realize this is difficult to believe, but I was overjoyed! It meant I was not alone and there were others who were struggling. It also meant, for me, that I could address my issues without guilt and shame. Responsibility for the disorder now belonged to me and I felt relief.”

I was the last speaker at the briefing. I spoke about my role as the Education and Prevention Coordinator for the Gail R. Schoenbach F.R.E.E.D. Foundation. In this capacity, I serve as a patient advocate. To illustrate the need for the patient advocacy piece of the FREED Act, I shared three stories of young woman who lost their lives due to lack of proper treatment and/or coverage of their eating disorder. I asked the audience to consider how the outcome for these young women might have been different had they had a Patient Advocate. “I want you to consider what you think might have been different if Nicole (Boice) had had a Patient Advocate. I firmly believe that Nicole would not have suffered as she did. I believe that the doctors would NOT have dismissed Nicole’s chest pain. I believe that Nicole’s insurance company would have authorized the life-saving treatment that Nicole was begging for. And as a result of having a better trained and fully funded Patient Advocate, I believe that Nicole, my dear friend, would not have died in her sleep just one night before she was supposed to leave to be here on the Hill, lobbying by my side for the FREED Act last April 27, 2010. I believe that Nicole’s family would not have had bury their beloved Nikki on April 30, 2010 –just three days after she was supposed to be alive and well on the Hill like all of you (at our April Lobby Day)”.

Jeanine Cogan, Ph.D., Policy Director for the EDC, wrapped up the briefing by inviting questions from both Staffers and audience members, and summarizing why the FREED Act needs to pass sooner rather than later, so that more lives are not senselessly lost. The briefing proved an informative and powerful ending to the EDC's September Lobby Day.

To read the speeches from the briefing, please visit the EDC homepage and click on the link.