"So What Exactly Does the EDC Do?"

Many people have asked me, "So what exactly does the EDC do?" The answer to that is a long list of wonderful things :) But in very short order: the EDC works to advance the federal recognition of eating disorders as a public health priority.

One way we do that week-to-week is by maintaining an awareness of, and connection to, opportunities on Capitol Hill that arise for us to directly influence policy (aside from the FREED Act) that stands to impact those affected by eating disorders. To that end, this week the EDC offered comments on SAMHSA's proposed definition of recovery (see below for more details). In offering comments on SAMHSA's proposed definition of recovery, the EDC called attention to the fact that in the world of substance abuse and mental health recovery, those with eating disorders exist, and they need to be included when defining "recovery", as well as when parceling out dollars and services related to "recovery".

We thank our Member Organizations, and all the individuals affected by eating disorders, who support the work that the EDC does on a week-to-week basis. Together we are a coalition of voices, experts and advocates, each of great spirit, making a concrete and viable difference in the way our elected officials and federal agencies recognize eating disorders.

yours from the Hill,
Kathleen MacDonald
Policy Assistant, Eating Disorders Coalition

SAMHSA Proposed Definition:

http://blog.samhsa.gov/

Recovery from mental health and substance abuse disorders is defined as "a process of change through which individuals work to improve their own health and well-being, live a self-directed life, and strive to achieve their full potential." SAMHSA also describes four dimensions of recovery (health, home, purpose, and community) and ten guiding principles that support recovery (recovery is person-driven; it occurs through many pathways; it is holistic; it is supported by peers and allies; it is supported through relationships and social networks; it is culturally-based and influenced; it is supported by addressing trauma; it involves individual, family, and community strengths and responsibility; it is based on respect; and it emerges from hope).

Make Your Voice Heard re: "Maggie Goes on a Diet"

If you are among those concerned about the soon-to-be-released children's book, "Maggie Goes on a Diet" and want your concerns effectively heard, the EDC invites you to use the following tips for writing a letter and/or an OpEd. (A sample letter for you to edit with your personal information/concerns, follows this list of tips).

To write an OpEd piece in your local press:

• Start with a powerful opening statement
• Make it personal and specific
• Make sure your main points come early and you stay focused on one message
• Email and/or call the editor to confirm your letter’s arrival. Persistence counts, but so does politeness
• Give your real name and contact information
• If sending by email, send in the body of the email, not as an attachment
• All newspapers get many more op-ed columns and letters than they run; the bigger the circulation of the publication, the more competition for space
• KISS –Keep it short and simple. Use short sentences, and stay focused on your core message
• Do not send identical op-ed pieces or letters to the editor to more than one newspaper in your area; let the editor know that your op-ed is “exclusive” to that paper
• Be prepared to shorten and re-submit your article as a letter to the editor in case it is not accepted as an op-ed
• Don’t overlook TV and radio stations – some accept essays or letters for broadcast
• Check the facts, and say only what you can verify factually from outside sources unless you are telling your experience
• Don’t just complain; offer a specific action
• Read your letter aloud to yourself to check for errors
• Have other people check your letter for spelling, grammar and meaning before sending
• Monitor the paper for your letter.
• Email us a copy of your letter/OpEd!
• End with your contact information: Name, Address, Daytime telephone, Email

SAMPLE letter for you to edit with your personal concerns/contact information:

"Dear Mr. Kramer,

As someone whose life has been directly impacted by dieting and eating disorders, I am writing to express my concerns of your soon-to-be-released book "Maggie Goes on a Diet".

According to the plot-summary of your book, the main character Maggie "goes on a diet and is transformed from being extremely overweight and insecure to a normal sized girl who becomes the school soccer star. Through time, exercise and hard work, "Maggie" becomes more and more confident and develops a positive self image." The plotline, title and cover illustration ("Maggie" gazing into a mirror while holding up a dress smaller than her body, viewing a thinner version of herself) of your book stand to perpetuate these harmful myths: when a girl loses weight she becomes happier; there is a 'normal' size; dieting transforms a person; people of various shapes, weights and sizes can't be a star soccer player; and wearing a smaller dress is a laudable goal for a young girl. I find it especially concerning that you define the "Maggie" on the cover of your book as "extremely overweight". You cannot tell if someone is overweight or normal, let alone "extremely overweight", just by looking at them. By defining “Maggie” as “extremely overweight”, your book serves to increase stigmatization and discrimination based on body-size. Since you also published a book on bullying, I call your attention to be more aware of the harm in judging someone on their outward appearance. A teenager from Michigan recently took her own life after being teased about her size. She was not overweight, but kids teased her for being "not skinny". It is important to teach children, and adults, that what is a normal size for one is not necessarily normal for someone else. Healthy bodies come in varying shapes and sizes.

While childhood obesity is an issue in our country, bullying based on body-size, dieting and eating disorders also wreak havoc on millions of Americans. According to the FREED Act, the Federal Response to Eliminate Eating Disorders, between 4 and 20 percent of young women practice unhealthy patterns of dieting, purging, and binge eating; eating disorders usually appear in adolescence and are associated with substantial psychological problems, including depression, substance abuse, and suicide; for children 12 years of age and younger, hospitalizations for eating disorders increased by 119% between 1999 and 2006; and body dissatisfaction in young girls has been shown in White, African-American, Hispanic, and Asian girls. It has also been shown that dieting is one of the leading pre-cursors to developing an eating disorder. With Eating Disorders being the deadliest of all mental illnesses, I hope you see why I feel your book's implied messages are dangerous at best, lethal at worst.

I encourage you to reconsider publishing this book. I also encourage you to speak with experts in the field of eating disorders to create a new book that teaches kids a non-diet approach to healthy living, as well as size-acceptance. In doing so, you can still accomplish what seems to be your intended goal – helping the nation's most vulnerable population: our youth; and you can do it without causing them harm.

I look forward to your response.

Sincerely…YOUR NAME & CONTACT INFORMATION HERE”

The Latest Health Care Court Case

The Latest Health Care Court Case | The White House

There has been no shortage of court cases regarding the constitutionality of the Affordable Care Act. Before today, four courts, including the Sixth Circuit Court of Appeals, examined the health reform law and found it constitutional.

Today, a different court ruled against the Affordable Care Act’s individual responsibility provision. We strongly disagree with this decision and we are confident it will not stand.

The individual responsibility provision – the main part of the law at issue in these cases – is constitutional. Those who claim this provision exceeds Congress’ power to regulate interstate commerce are incorrect. Individuals who choose to go without health insurance are making an economic decision that affects all of us – when people without insurance obtain health care they cannot pay for, those with insurance and taxpayers are often left to pick up the tab.

Judge Sutton, a Judge in the Sixth Circuit who upheld the law, declared that the individual responsibility provision is constitutional and wrote: “In choosing how to regulate [people who choose to self-insure], Congress also did not exceed its power.”

Judge Martin, another Judge who upheld the law in the Sixth Circuit, said the Affordable Care Act is constitutional under the Commerce Clause because “(1) virtually everyone requires health care services at some unpredictable point; and (2) individuals receive health care services regardless of ability to pay. Virtually everyone will need health care services at some point, including….those without health insurance.”

That’s why the Affordable Care Act requires everyone who can afford it to take responsibility for their own health care and carry some form of health insurance.

For the 83% of Americans who have coverage and who are already taking responsibility for their health care, the Affordable Care Act will help insurance premiums to decrease over time. And only those who are able to pay for health insurance will be responsible for obtaining it. The Congressional Budget Office estimated that only 1 percent of all Americans would pay a penalty for not having health insurance in 2016.

Without the individual responsibility provision, people could wait until they’re sick or injured to apply for coverage since insurance companies could no longer say no or charge more. That would lead to double digit premiums increases – up to 20% – for everyone in the individual insurance market.

By bringing everyone into the health insurance system, we can not only lower costs for everyone but also finally ban discrimination against individuals with pre-existing conditions.

Today’s ruling is one of many decisions on the Affordable Care Act that we will see in the weeks and months ahead. In the end, we are confident the Act will ultimately be upheld as constitutional.

Stephanie Cutter is Assistant to the President and Deputy Senior Advisor

EDC Policy Assistant to speak at The Emily Program

see The Emily Program's blog for more details of the upcoming presentation by me and Becky Henry...

The Emily Program: Book Reading of Just Tell Her To Stop by Becky Hen...: "Common Good Books presents Becky Henry, author of Just Tell Her To Stop: Family Stories of Eating Disorders. (With guest speaker Kathleen MacDonald")

"Mortality Rates in Patients With Anorexia Nervosa and Other Eating Disorders:

Thank you to Joe Kelly of The Emily Program for sharing this article:

The new issue of *Archives of General Psychiatry* includes an article: "Mortality Rates in Patients With Anorexia Nervosa and Other Eating Disorders: A Meta-analysis of 36 Studies."

Jon Arcelus, LMS, MSc, FRCPsych, PhD; Alex J. Mitchell, MRCPsych; Jackie Wales, BA;& Søren Nielsen, MD.

Here's how the article starts:

[begin excerpt]

Eating disorders are increasingly recognized as an important cause of morbidity and mortality in young individuals.

The lifetime risk of anorexia nervosa (AN) in women is estimated to be 0.3% to 1%, with a greater number of patients having bulimia nervosa (BN).1-2

Anorexia nervosa is a serious psychiatric illness characterized by an inability to maintain an adequate, healthy body weight. Bulimia nervosa is characterized by recurrent episodes of binge eating in combination with some form of unhealthy compensatory behavior.

Eating disorder not otherwise specified (EDNOS) is a catchall DSM-IV diagnosis for patients with significant features of eating disorders that do not meet the criteria for AN or BN.3

Despite EDNOS being a common presentation in eating disorders services, few published data exist regarding mortality rates in patients given this diagnosis.4-5 Anorexia nervosa is a serious illness in the young population, and outcome is often poor.

Steinhausen6 showed that only 46% of patients fully recovered from AN, a third improved with only partial or residual features of the disorder, and 20% remained chronically ill for the long term.

A low body mass index (BMI), a greater severity of social and psychological problems, self-induced vomiting, and purgative abuse have been identified as predictors of poor outcome in this disorder.7

Most mortality research in the eating disorders literature has focused on AN.

Some authors have suggested that the mortality risk for BN is low.8

This conclusion is surprising, given the medical complications associated with self-induced vomiting, laxative abuse, and other purging behaviors.

The ratio of observed to expected deaths (ie, the standardized mortality ratio [SMR]) for AN has been reported to be between 0.719 and 12.8.10

Also, it often has been reported that suicide is a particularly common cause of death in AN.11-12 Muir and Palmer13 suggested that official death certification may underestimate the incidence of suicide associated with this disorder.

The wide variation of SMRs for eating disorders partly may depend on the length of follow-up.

For example, Nielsen14 reported an SMR of 9.6 after approximately 10 years of follow-up, as opposed to 3.7 in 4 studies with a mean follow-up period ranging from 20 to 36 years.

Other factors that correlate with a higher estimate of mortality are age, case severity, study period, and whether other eating disorders with a lower mortality rate were evaluated separately.15

Given this debate, the primary aim of our study was systematically to compile and to analyze mortality rates in individuals with eating disorders, taking into account variations in sampling, diagnosis, and length of follow-up of the study.

Our hypothesis was that mortality rates would be elevated in all types of eating disorders. We also aimed to explore factors associated with mortality among individuals with AN, BN, and EDNOS.

[end excerpt]

Here's an excerpt from the Discussion section:

[begin excerpt]

As hypothesized, we found an overall elevated mortality rate for patients with all types of eating disorders.

This risk of death was highest for those with AN, with a weighted annual mortality rate of 5 per 1000 person-years (slightly higher in studies of females only), followed by patients with EDNOS at 3 per 1000 person-years of follow-up and BN at 1.7 per 1000 person-years of follow-up.

The mortality rate, particularly for AN, was considerably lower for those studies that had a long follow-up period, such as that by Korndörfer et al,9 which showed an SMR for AN of 0.71 and had 27.1 years of follow-up, or the study by Crow et al,21 with an SMR of 1.7 and a follow-up of 18.13 years.

Studies15, 19, 40 with fewer years of follow-up generally showed a high SMR. Given the crossover observed between diagnoses, the actual duration of follow-up may be less important than the duration of illness.

[end excerpt]

Another excerpt: "Twelve studies described deaths from suicide in patients with AN, and analysis showed that the weighted annual mortality due to suicide in AN was 1.39, which means that 1 in 5 individuals with AN who died had committed suicide."

Another excerpt: "Our study found that the mortality rates in patients with eating disorders are high. In some cases (ie, those involving AN), they are much higher than for other psychiatric disorders. Studies in other psychiatric disorders have found SMRs of 2.8 and 2.5 in males and females with schizophrenia,54 1.9 and 2.1 in males and females with bipolar disorder, and 1.5 and 1.6 in males and females with unipolar disorder, respectively.55"

Another excerpt: "Based on the information from different studies, factors highlighted for poorer outcome, including mortality, in patients with AN included older age at first presentation,31, 36, 40 alcohol misuse,22, 34, 55 and low BMI at presentation.25, 34, 46 Other strong predictors of mortality involved comorbid disorders, such as affective disorder, suicidal behavior or self-harm, alcohol abuse, and a history of hospitalization for such mental health problems. Button et al22 found that only BMI at assessment and alcohol misuse reliably predicted mortality status, although evidence of an affective disorder almost was significant. Some studies24, 46 also have found evidence of an association between alcohol misuse and increased mortality in AN. One of them26 found that younger age and longer hospital stay at first hospitalization were associated with better outcome, and psychiatric and somatic comorbidity worsened the outcome of patients with eating disorders."

The author note gives the following contact information: Jon Arcelus, LMS, MSc, MRCPsych, PhD, Brandon Unit, Eating Disorders Service, Leicester Partnership Trust, Leicester General Hospital, Gwendolen Road, Leicester LE5 4PW, England (<J.Arcelus@lboro.ac.uk>).

EDC Junior Board Fundraiser

The EDC would like to invite you to an EDC Junior Board fundraiser:

A fundraiser will be held August 4th from 4-8PM at Panera Bread (Willow Lawn location only) at 1601 Willow Lawn Drive, Richmond, VA. 20% of your purchase will be donated to the Eating Disorder Coalition, when  you bring in this flyer. Please bring a separate flyer for each in your party.

http://www.panerabread.com/about/fundraiser/print.php?SID=f700cfb21b063bd13a88e7c02234f04c

Pre Existing Conditions & Insurance

Call to Action

The Pre-Existing Condition Insurance Plan

The Pre-Existing Condition Insurance Plan, established by the Affordable Care Act, is already changing—and saving--the lives of people who have been locked out of the individual insurance market because of their health. New eligibility standards and lower premiums in some states, announced by the Department of Health and Human Services on May 31, now make it a lot easier and more affordable for people to enroll in this program.

The program provides comprehensive coverage at the same price that healthy people pay. Enrollees receive primary and specialty care, hospital care, prescription drugs, home health and hospice care, skilled nursing care, preventive health and maternity care.

But, the time to act is now. The Pre-Existing Condition Insurance Plan is a bridge program—only available until 2014—when new insurance rules go in to effect.

Here’s what you can do to extend the reach of this health coverage lifeline to people in your community:

• Ask your friends, clients or patients to find out how the program works--from benefits, and premium rates to eligibility and how to apply. They can visit www.pcip.gov and select “Find Your State.” Individuals can select their state from a drop down menu to get program specifics. In addition, a Call Center is open Monday-Friday from 8 a.m. to 11 p.m. at: 1-866-717-5826 (TTY: 1-866-561-1604). (Information on new program changes is available at www.healthcare.gov/news/factsheets/pcip.)

• Post a PCIP badge (web link) on your organization’s website. You can go to http://www.healthcare.gov/stay_connected.html to find the badge and the code you will need to insert this badge in either English or Spanish on your web page.

• Include a PCIP drop-in article in the next issue of your newsletter. Please drop a note to laurie.oseran@hhs.gov for a copy of a PCIP newsletter article.

• Include a PCIP speaker on your next webinar, conference call, and state or national meeting. Experts from our National Speaker Bureau can tell your colleagues and members everything they need to know about the Pre-Existing Condition Insurance Plan. Our speaking staff includes health insurance experts such as Jay Angoff (Senior Adviser to Secretary Sebelius), Richard Popper (Director, PCIP), and other program experts. To find out how to arrange a speaker for your next event, please contact: Laurie Oseran at laurie.oseran@hhs.gov.

Thank you in advance for your support and helping us reach people who can benefit from this important new coverage program.