Monday, July 25, 2011

"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 (<>).

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.

Tuesday, July 19, 2011

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 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
  • Post a PCIP badge (web link) on your organization’s website. You can go to 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 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

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

Saturday, July 16, 2011

What is the FREED Act?

Someone asked me a question today, "What is the FREED Act?" I'm happy to answer that!

The FREED Act is the "Federal Response to Eliminate Eating Disorders Act", the first bill in the history of Congress to address eating disorders research, treatment and education and prevention. The FREED Act was first introduced in the 111th Congress by Congressman Patrick Kennedy in the House and by Senators Harkin, Franken and Klobuchar in the Senate. This Congressional Session (the 112th), the FREED Act was reintroduced in the House by Congresswoman Tammy Baldwin from Wisconsin, and in the Senate by Senator Tom Harkin from Iowa, and Senators Al Franken, and Amy Klobuchar, both from Minnesota. The FREED Act is a "stand alone bill" (ie: not attached to any other piece of legislation) and it has bi-partisan support (ie: both Republicans and Democrats support the FREED Act)

How will the FREED Act make a difference? In many ways!

The FREED Act is divided into three main sections: Research, Education and Prevention, and Treatment. Below is a brief summary of what each of those sections of the FREED Act will do when it passes:

The Research section would fund a research agenda in order to:
  • Know the numbers. Determine the prevalence, incidence, and correlates of all eating disorders (anorexia nervosa, bulimia nervosa, binge eating disorder and eating disorder not otherwise specified).
  • Know the death rates. Determine the morbidity and mortality rates associated with all eating disorders and provide a public report of this data annually.
  • Know the costs or “economic burden” of eating disorders. Undertake the necessary investigations to conduct an economic analysis of the costs of eating disorders in the United States, including years of productive life lost, missed days of work, reduced work productivity, costs of treatment, hospitalizations, costs of medical and psychiatric comorbidities, (cost to family, cost to society) etc.
  • Better understand the etiology of eating disorders and effective treatments.
  • Provide training opportunities for new researchers.
The Education & Prevention section would:
  • Study mandatory BMI reporting in school. Determine the outcome of measuring BMI in schools and reporting the results to parents (including measuring eating disorders symptoms, and incidence of teasing or bullying based on body size).
  • Grant Program of the Education and Training for all Health Professionals. Train health professionals, to identify, prevent, appropriately treat and address the complications of eating disorders (using a team approach).
  • Addressing eating disorders in the Schools. Programs to train educators on effective eating disorders screening, detection, prevention and appropriate methods of assistance.
  • Programs to improve the identification of students with eating disorders and increasing student and parent awareness of eating disorders.
  • Educating the public through Public Service Announcements (PSAs). Use PSAs to educate the public on types and the seriousness of (prevalence, co-morbidities, health consequences –both physical and mental) eating disorders, how to obtain help, discrimination and bullying based on mental illness, body size, and the effects of media on self esteem and body image.
  • Bring eating disorders into already existing obesity initiatives. Federally funded campaigns to fight obesity should also address eating disorders. Federal studies should include eating disorder related questions.
The Treatment section would:
(In the House bill):
  • All Americans with eating disorders deserve access to care. Any insurer that provides health coverage for physical illness must provide coverage for eating disorders.
  • Care according to universally accepted criteria. Insurers are to follow standards of care as written in the Practice Guidelines for the Treatment of Patients with Eating Disorders by the American Psychiatric Association.
  • The treatment setting must be appropriate to the patient’s needs and clinical presentation. Decisions regarding the treatment setting must include individual variables such as age, sex, ability to manage severity or co-morbidity, family involvement, and staff expertise and training.
  • Eating Disorders are complex conditions and require comprehensive treatment approaches. All treatment modalities should be covered, including but not limited to family, individual and group therapies, nutrition counseling, psychopharmacology, body Image therapy, and medical treatment.
  • Eating disorders treatment made accessible to people of low income by including eating disorder treatment to the services covered by Medicaid. The bill also requires that children covered by Medicaid be screened for eating disorders.
  • Advocacy support for those who are sick. The bill includes a Patient Advocacy Program where individuals needing care have support navigating insurance and receiving the treatment they need.
(In the Senate bill)
  • Eating disorders treatment made accessible to people of low income by including eating disorder treatment to the services covered by Medicaid. The bill also requires that children covered by Medicaid be screened for eating disorders.
  • Advocacy support for those who are sick. The bill includes a Patient Advocacy Program where individuals needing care have support navigating insurance and receiving the treatment they need.
A little history of The FREED Act: The FREED Act was created, and then carefully vetted, by numerous eating disorder professionals, researchers, treatment providers, parents, sufferers, and others who care about eating disorders. The Eating Disorders Coalition (a coalition of 35 Member Organizations and individual and family advocates) held National Policy Conferences on Capitol Hill in 2004 and 2005 where experts and those who care about eating disorders were invited to participate in "brain-storming" sessions to create a "Dream Bill to Address Eating Disorders". After we came up with a "Dream Bill", our Policy Director, Jeanine Cogan, sought out a Member of Congress who would "champion" our issue. (a "champion" is someone who will introduce the bill on the floor of the House and/or Senate, as well as a "champion" is someone who cares about the issue the bill addresses) ~ Congressman Patrick Kennedy became a ready and tireless champion of the bill and his staff worked very hard to help us come up with the official bill language. Once we had that official bill language (thanks to Legislative Council) we then came up with the name: the FREED Act, the Federal Response to Eliminate Eating Disorders (you can read the actual bill language by going to: and plugging in the bill number --listed at the end of this blog). After 5 years of crafting, drafting and re-drafting, the FREED Act was ready to be introduced. We did so on February 25, 2009 in the House. It was a monumental day in the history of the EDC and for all those impacted by eating disorders. The Senate version of the FREED Act was then introduced on April 26, 2010. In the 111th Congress, the House version of the FREED Act gained 52 co sponsors. The Senate version of the FREED Act gained 10 co sponsors in the 111th Congress. The FREED Act was reintroduced this year in the 112th Congress by our new champion in the House, Congresswoman Tammy Baldwin, and in the Senate by Senators Harkin, Franken and Klobuchar. Now we need to work on gaining co sponsors in order to help get the FREED Act passed into law.

How and why do we get the FREED Act passed into law?

How? We will get the FREED Act passed into law with your help. We need the help of all those affected by eating disorders to use their voice on Capitol Hill at EDC National Lobby Day and during our Letter Writing Campaigns. By using your voice and sharing your story at Lobby Day, you help educate Members of Congress and their staff about eating disorders and about why the FREED Act needs their co sponsorship. The more co sponsors we get, the better chance we have of getting a hearing --one of the key steps in the process of a bill becoming law. (I've attached the video to "I'm Just a Bill" at the end of this blog to address in more detail: how does a bill (like the FREED Act) become a law?)

Why? Passing the FREED Act would mean that every state in the country would be impacted by what the FREED Act addresses (research, education and prevention, treatment of eating disorders). In short order: Every person affected by an eating disorder would benefit from the FREED Act. It would save lives.

What can you do to help get the FREED Act passed? First and foremost: No matter how you are affected by eating disorders (professional, sufferer, care-giver, etc.), stay healthy so that you can use your voice to affect change! Then:
  • Make people aware that the FREED Act exists by sharing this blog
  • Ask people to come to become a member of the EDC (
  • Come to EDC National Lobby Day
  • Become a fan of the EDC on FB
  • Follow the EDC on Twitter
  • Join in our Letter-Writing campaign
  • Subscribe to our blog
I hope this is helpful and helps makes clearer what the FREED Act is and why it is necessary for you to get involved. ANY questions you have, please contact us by commenting on this blog or by commenting on our FB page.

One of our upcoming blogs will focus on: "How Will the FREED Act Impact Me Personally? --voices of those affected by eating disorders"

Thank you for caring and for helping to pass this life-saving legislation.
Yours from the Hill, Kathleen

  • To read the full text of the FREED Act go to: and enter bill numbers: HR 1448 (for the House version) and S 481 (for the Senate version)
  • To learn more about how a bill becomes a law, visit:

Wednesday, July 13, 2011

Inspiring (and timely!) Conversation on Media and Girls Today

Today my boss Jeanine and I had the awesome privilege to participate in a conference
call with actress Geena Davis, Founder of the Geena Davis
Institute on Gender in
Media, and the former FCC Commissioner, Deborah
Taylor Tate. The call was to discuss
the launch of "Healthy MEdia:
Commission for Positive Images of Women and Girls" -
an initiative spearheaded by the Girl Scouts!
[How timely given that the night before
there was a pretty heated
discussion on my FB wall, and in other FB groups/blogs,
regarding the
"Truvia" commercial (which, trust me, I brought up on the call! :)]

When it came our turn to ask a question/make a statement, I let them know that the
EDC is in support of this initiative and asked if they planned to work with Federal
Policy as one of their avenues by supporting the Healthy Media for Youth Act, and
similar legislation. I was able to
acknowledge what the focus of the EDC
(including our Member Orgs and
Advocates) is on Capitol Hill with Federal Policy,
as well as how
supportive we are already of the Healthy Media for Youth Act.
Of course, Geena
Davis, being the savvy advocate she is, knew all about the Healthy
for Youth Act. Rock on and thank you, Geena!

For so many reasons, we look forward to working
with the amazing people and
organizations behind this initiative.
We believe that the initiative will help to
decrease the insidious body-dislike
that ravages the minds and bodies of millions of
our nations' youth. And
perhaps even better, we believe that the initiative will
help to increase the healthy
self-esteem of generations yet to come.

Yours from the Hill, ~Kathleen