Eating Disorders Coalition News and Information

24 Hours to Make a Difference

2012-01-30T13:13:00.000-08:00

Action Alert! Send your comments by midnight (EST) on January 31, 2012

The Eating Disorders Coalition for Research, Policy & Action asks you to respond to a Bulletin by Heath and Human Services (HHS) that outlined their strategy for implementing the essential health benefits (EHB) of the Patient Protection and Affordable Care Act (ACA).

The EDC was optimistic that with the passage of ACA and the inclusion of mental health as an essential health benefit, the continued and widespread insurance discrimination experienced by people with eating disorders would come to an end.

Join us in asking HHS to capitalize on this moment in history and incorporate the following 3 recommendations so that people with eating disorders will finally have access to the life saving treatment they are often denied.

Please send comments to EssentialHealthBenefits@cms.hhs.gov.

Urge the Secretary of HHS to:

1. Replace the sizeable flexibility given to the states with national uniform standards for the EHB categories.

When Congress passed the ACA and created the EHB they intended to create a uniform minimum benefit standard that would apply to all States in order to correct existing disparities. Providing national standards that include the treatment of eating disorders would guarantee uniformity across states.

Currently the options for eating disorders treatment are highly variable based on where a person lives. A state such as Rhode Island with a comprehensive state parity law requires insurance companies to provide eating disorder treatment so that individuals in that state have options for care. Contrast this with states like Wyoming and Arkansas that have no parity law and no eating disorder treatment available within the state, yet based on national prevalence data, these two states alone likely have over 75,000 individuals with eating disorders within their borders.

In the absence of a uniform standard, we believe there is a significant risk that eating disorders will continue to be inadequately covered in many States.

We urge HHS to provide concrete language defining the EHB for mental health, which requires the coverage of eating disorders.

2. Provide a federal definition of medical necessity that is broad and inclusive.

The degree to which Americans enjoy full access to covered services within the ten EHB categories will depend, to a large degree, on the medical necessity standards that plans use to determine whether a service within these categories is covered.

Few regulations address the definition of medical necessity: there is no federal definition, and only about one-third of states have any regulatory standards for medical necessity. Consequently, the definition of “medical necessity” is most commonly found in individual insurance contracts that are defined by the insurer. As a result, the standard of medical necessity is most often controlled by the insurer, not the treating professional.

This has dire consequences for people suffering from eating disorders who are continually discharged from treatment or denied treatment based on erroneous and shifting definitions of medical necessity, per insurers.

We urge HHS to offer a federal definition of medical necessity that 1) is broad enough to include all clinically necessary levels of care for eating disorders and 2) requires insurers to use well respected, clinically proven or evidence based criteria for the effective treatment of mental illness.

3. Eliminate eating disorders from exclusion lists.

Exclusion of eating disorders is all too common on the part of insurers seeking to limit interventions deemed non-essential. Despite being biologically based mental illnesses with severe physical health complications, including death, eating disorders are all too often found on lists of benefit exclusions.

We urge HHS to ensure that eating disorders treatment is no longer specifically excluded and end the discrimination against individuals with eating disorders.

Please send your comments outlining the need for these 3 recommendations and include examples from your personal and/or clinical experiences as relevant.
Send comments to EssentialHealthBenefits@cms.hhs.gov by midnight (EST) on January 31, 2012.

**Please also send your comments to: kmacdonald@eatingdisorderscoalition.org

Action Alert -Petition to End Discrimination

2012-01-10T09:24:00.001-08:00

The EDC supports the efforts of this petition and encourages you to sign your name today. Then spread the word!

http://www.change.org/petitions/childrens-healthcare-of-atlanta-end-the-stop-sugarcoating-obesity-campaign

Together we can stop the dangerous trend of shaming people because of their weight, shape, size.

~yours from the Hill, the EDC

The "Stop Sugarcoating" campaign developed to address childhood obesity sends several dangerous messages to both children and adults. It shames children who are larger, reinforces social prejudices around size by encouraging weight stigma, and rather than focusing on healthy behaviors it uses bullying style advertising to encourage kids to diet and exercise. In short, the campaign traumatizes children struggling with their own feelings about size and may even reinforce their use of food as a coping mechanism. See the campaign here: http://strong4life.com/#

Public bullying of kids and adults because of size is not acceptable. The campaign does not consider that kids of all sizes are susceptible to eating disorders, which have the highest rates of mortality with regard to mental health illnesses. Public shaming is archaeic, dangerous, and inexcusable. Weight stigma is extremely damaging and studies show it actually lends to increased weight. The public health officials who designed this campaign should be embarrassed and do everything they can to stop this campaign. They also owe an apology to the citizens of Georgia and the entire country. The Binge Eating Disorder Association (BEDA) sponsors the National Weight Stigma Awareness Week yearly during the last week of September. We encourage public officials and others to read the information provided about weight stigma on our website at http://www.bedaonline.com/2011WSAW/index.html. We also encourage them to consider the risk/benefits of the campaign they have designed. We ask you, CHOA, to stop sugarcoating your weight stigma, call a spade a spade, and do the right thing.

photo credit: http://barbaracolebythesea.com/wp-content/uploads/2010/10/discrimination.jpg

EDC Addresses All Treatment Denials

2011-12-07T11:07:00.000-08:00

EDC Update: The Eating Disorders Coalition expands HICA Campaign to include all denials of eating disorder treatment.

In early 2011 the EDC initiated the Hold Insurance Companies Accountable Campaign (HICA Campaign) as a response to a number of insurance companies that are categorically denying residential treatment for eating disorders.

We are now expanding the HICA Campaign to include all denials of eating disorder treatment.

Mental Health Parity requires that any group health plan that includes mental health and substance use disorder benefits along with standard medical and surgical coverage must treat them equally. According to the nationally recognized law firm of Patton Boggs, the statute is clear that limits on the scope and duration of treatment must be applied no more restrictively in the mental health benefit than in the medical/surgical benefit. The statute defines treatment limitations as "limits on the frequency of treatment, number of visits, days of coverage, or other similar limits on the scope or duration of treatment."

Not complying with the parity regulations is a calculated effort to avoid costs at the expense of people's health and lives. The EDC argues that treatment should be determined by severity and type of illness, rather than what is arbitrarily allowed by an individual's insurance company.

Through legal and political advocacy, the EDC's Hold Insurance Companies Accountable Campaign is working with specialized attorneys and experts in the field to put an end to such discriminatory and deadly practices.

IN ORDER TO HELP YOU, WE NEED TO HEAR ABOUT YOUR EXPERIENCE:

If you or a loved one has been denied insurance coverage for eating disorder treatment, please email us at: EDCHoldsInsuranceAccountable@yahoo.com

We will send you a short form to fill out and then work with you to alert Members of Congress and other people who could help address your situation (such as pro-bono attorneys if appropriate).

You deserve access to care and we look forward to helping you gain justice in that regard.

use your voice -Action Alert

2011-11-21T13:03:00.000-08:00

EDC asks you to use your voice to make sure eating disorders get included in insurance coverage

If you haven't already: Please submit your comments today!

Deadline has been extended to November 30th

_______________________________________________

The Department of Health and Human Services (HHS) is tasked with promulgating regulations for how the EHB will be designed and implemented. The EDC is asking HHS to incorporate three recommendations into the EHB: 1) eating disorders should be specifically listed in the EHB, 2) all levels of treatment including residential treatment, as recommended by the APA Guidelines, should be part of the EHB, and 3) the definition of medical necessity should be broad and inclusive so that insurers cannot assign medical necessity at random.

Please add your voice by sending comments to HHS ) you urge them to support these above 3 recommendations and 2) some of your personal experience that underscores why these recommendations are important. For example: maybe you personally benefited from successful residential and/or other treatment ---include that in your comments. If you were denied residential and/or other treatment ---include that, and the consequences of being denied, in your comments. And include anything else about your experience or expertise that underscores the need for these 3 recommendations. We know that personal stories matter to HHS.

TO SUBMIT A COMMENT, send your email to: externalaffairs@hhs.gov

Please then send an email to kmacdonald@eatingdisorderscoalition.org to inform us that you sent your comments.Thanks so much for taking a few minutes out of your day to make an important difference. Together we will improve the lives of those suffering from eating disorders!

Here are some additional talking points the EDC has made:

In response to the Department’s stated questions:

In terms of how to best balance comprehensiveness of included in essential health benefits and affordability; we believe that:
o Ensuring access to comprehensive specialized eating disorder care, across all levels of care including outpatient, intensive outpatient, partial hospitalization, residential, and inpatient, will allow individuals to access adequate, effective, evidence-based care in specialized settings, and decrease their need to access less specialized, less effective, more emergent medical and psychiatric care. Decreasing use of high-cost emergent and/or on-going use of inadequate care will balance comprehensiveness and affordability. Eating disorders have the highest mortality rate of all psychiatric illness. Including comprehensive eating disorders treatment in EHB will safe lives.

In terms of how the Department might ensure that essential health benefits reflect an appropriate balance among categories; it is important for the Department to know that:
· Eating disorders affect up to 25 million Americans, across all age, gender, SES, and ethnicity groups. Ensuring access to treatment will have an appropriate balance across the population of sufferers, many who, without adequate access to specialty care would unduly access inappropriate, inadequate, but costly, care.

In terms of what should be taken into account to prevent discrimination against individuals because of their age, disability status, or expected length of life; it is important to remember that:
o Eating disorders do not discriminate. Eating disorders affect up to 25 million Americans, from as young as age 8 through the lifespan. Without adequate access to effective, specialized care, many end up seeking disability coverage due to their illness.

In terms of what models HHS should consider in developing essential health benefits; there are some good model policies in effect currently:
o Insurance policies that include adequate and comprehensive access to specialized and comprehensive eating disorder care at all levels of treatment offer their members the opportunity for full recovery. Many insurers currently offer this type of coverage to their members. This type of treatment access is effective in successful treatment and resolution of the eating disorder. A fully recovered individual contributes to the workforce, is a productive and successful member of society.

In terms of what criteria should be used to update essential health benefits over time; we believe that the combination of research and clinical practice expertise yield the most comprehensive road-map for determining updates :
o As advances in eating disorders treatment are made, updates to essential health benefits should be related to clinical utility and integration of research findings.

Jeanine Cogan, Ph.D.

Policy Director

Eating Disorders Coalition

www.eatingdisorderscoalition.org

202-352-3208

Over 200 Respond to HHS Action Alert! Thank You for Your Help

2011-11-09T13:49:00.000-08:00

Dear EDC Advocates,

Before I began serving as the EDC's Policy Assistant I was an EDC Advocate who came to EDC National Lobby Days and participated in Action Alerts.

When I first became an EDC Advocate back in 2002, I admit, I did not firmly believe that my voice could make that much of a difference. I mean, every day I listened to NPR and watched CSPAN and heard endless stories of gridlock and spending cuts plaguing our Federal Government, so in the scheme of things I didn't think that one Kathleen MacDonald could make an impact. Today, I know better. I know that my voice matters. And I want you to know that your voice matters.

Last week the EDC invited you to raise your voice in a time-sensitive and highly important Action Alert. Over 200 of you wrote in to HHS, sharing your voice, your stories, your research, your knowledge, your loved one's memories and your specific requests regarding eating disorders and the soon to be determined Essential Health Benefits. You made an impact and you spoke for the countless millions who suffer, for the countless millions who try to access treatment only to be denied by their insurance company, for the countless whose lives have been cut far too short by these insidious diseases, and for future generations who can be prevented from suffering the most deadly of all mental illnesses.

On a personal note - with each one of your emails to HHS you increased the flame of hope within me. You increased my hope that together we will change the way those affected by eating disorders are treated --including families, sufferers, researchers, and clinicians.

Thank you for each of your comments to HHS and for your continued advocacy. We look forward to continuing our other advocacy efforts with you as we work to ensure that eating disorders research, treatment and education and prevention are adequately and duly addressed, and that people suffering from eating disorders receive the treatment, services and compassion they deserve.

Yours from the Hill, Kathleen

Photo courtesy PDPhoto.org

Important Action Alert!

2011-10-28T12:27:00.000-07:00

EDC asks you to use your voice to make sure eating disorders get included in insurance coverage

Please submit your comments today!

Deadline for this is Monday at 5 pm EST.

_______________________________________________

The Department of Health and Human Services (HHS) is tasked with promulgating regulations for how the EHB will be designed and implemented (---aka: HHS is RIGHT NOW deciding what these "Essential Health Benefits" will 'look like' in the lives of you, me, in each of us)

The EDC is asking HHS to incorporate three recommendations into the EHB: 1) eating disorders should be specifically listed in the EHB, 2) all levels of treatment including residential treatment, as recommended by the APA Guidelines, should be part of the EHB, and 3) the definition of medical necessity should be broad and inclusive so that insurers cannot assign medical necessity at random.

Please add your voice by sending comments to HHS as instructed below and tell them 1) you urge them to support these above 3 recommendations and 2) some of your personal experience that underscores why these recommendations are important. For example: maybe you personally benefited from successful residential and/or other treatment ---include that in your comments. If you were denied residential and/or other treatment ---include that, and the consequences of being denied, in your comments. And include anything else about your experience or expertise that underscores the need for these 3 recommendations. We know that personal stories matter to HHS.

TO SUBMIT A COMMENT, send your email to: externalaffairs@hhs.gov

The Eating Disorders Coalition Speaks Out

2011-10-25T11:08:00.000-07:00

The EDC urged HHS to include eating disorders, and all levels of appropriate treatment, as part of the Essential Health Benefits under the Affordable Care Act.

_______________________________________________

A key component of the Affordable Care Act (ACA) is the requirement that all insurance plans offered through the exchanges must cover, at a minimum, a number of Essential Health Benefits (EHB). Mental health is one of these Essential Health Benefits that must be included. The Department of Health and Human Services (HHS) is tasked with promulgating regulations for how the EHB will be designed and implemented. HHS is grappling with a number of questions such as how they can best meet the dual goals of balancing the comprehensiveness of coverage included in EHB with affordability. Additionally HHS wants to determine what policy principles and criteria should be taken into account to prevent (as is required by the Affordable Care Act) discrimination against individuals because of their age, disability status, or expected length of life. In order to answer these and other pertinent questions pertaining to the EHB, HHS is asking to hear from providers, advocates and consumers and have organized a number of “listening sessions”.

The EDC attended one of those listening sessions on Thursday, October 20th and addressed a number of recommendations. Three recommendations we included were 1) eating disorders should be specifically listed in the EHB 2) all levels of treatment, as recommended by the APA Guidelines, should be part of the EHB. 3) the definition of medical necessity should be broad and a standard so that insurers cannot assign medical necessity at random.

Kathleen MacDonald, EDC Policy Assistant, started her testimony by sharing the devastating and moving true stories of Leslie George and Anna Westin who died more than a decade ago because they did not receive the life saving treatment they needed. She then fast-forwarded to Reanna’s story, a young woman from Nevada who died in late 2010, waiting for access to treatment. Reanna’s mother had taken a new job as a truck driver to have better insurance since their previous insurance would not authorize treatment. There was a 90-day waiting period for the new insurance to kick in. Reanna died shortly before the 90 days were up. Kathleen pointed out that ignorance and stigma surrounding these diseases and those who suffer from them, has not subsided in the 10 plus years since Anna and Leslie died, nor since the Mental Health Parity and Addiction Equity Act passed in 2008.

Kathleen delivered her verbal testimony with such heart and effectiveness that she received a personal email from one of the HHS Directors afterwards, thanking her for her words and how powerful they were. Part of the email read: “I have copied my HHS colleagues on this note to let you know that we discussed afterwards how moving your testimony was and we all want to thank you for sharing your experiences with us.”

-----------------

A few excerpts from Kathleen’s comments:

“Eating disorders need not continue to be the number one killer of all psychiatric illnesses and the number one killer of young women ages 15-24 who suffer anorexia.”

"if eating disorders are not specifically detailed out in a benefits package, they are often excluded, despite ‘mental health parity’. In fact, in January 2011, Federal BCBS, which insures over 8.3 million people, discontinued coverage of residential treatment for eating disorders. In fact, a treatment center in VA where many Federal employees needing treatment were when BCBS pulled the plug, shut down earlier this year."

"it is for those reasons and so many more that it is not only imperative that HHS consider including eating disorders but also that they spell out that insurers must follow the APA guidelines for the treatment of eating disorders, and that as those guidelines are updated, so should the EHB be updated"

"I also echo many of my colleagues who have said that the Essential Health Benefits package must include a broader definition of medical necessity that insurers must abide by. Why? Here is just one example why: to be considered anorexic (which most sufferers are not --most are EDNOS), you must weigh 85% of your Ideal Body Weight. This past summer an insurer in North Carolina decided to discharge a patient when she reached a painful 65% of her Ideal Body Weight (because that was their ‘new’ definition of “medical necessity”). This is just one of the many reasons why medical necessity needs a more broad and standard definition".

Jeanine Cogan, Ph.D., Policy Director

Eating Disorders Coalition

www.eatingdisorderscoalition.org

EDC response to NYTimes article

2011-10-24T12:25:00.000-07:00

The EDC responds to the NY Times article, "Eating Disorders a New Frontier Front in Insurance Fight". We wrote the following letter to the editor that was not published. The letter is so short in order to meet their length requirement of 150 words only.

To the NY Times:

Thank you for addressing the discrimination those suffering from eating disorders face when accessing insurance coverage for residential treatment. Unfortunately Ira Burnim of the Bazelon Center is quoted as an expert after he specifically stated he "was not familiar with eating disorders". If he is not familiar with eating disorders, his perspective is irrelevant and misleads the reader. According to the American Psychiatric Association Guidelines for the Treatment of Eating Disorders, residential care is a critical stage in a continuum of comprehensive and effective treatment. Residential treatment is often effective when the appropriate amount of treatment is provided, as demonstrated again in a 2011 outcome study (62% of patients with bulimia at a 4 year follow-up showed good outcomes). Clinicians are often prevented from treating patients appropriately because insurers prematurely discharge patients. This is why we need to pass the Federal Response to Eliminate Eating Disorders Act, which requires reimbursement for appropriate treatment.

Lisa Rachelle Lilenfeld, Ph.D.

President, Eating Disorders Coalition

3 Ways To Help Move The FREED Act Forward

2011-10-19T09:40:00.000-07:00

It has been a couple weeks now since EDC advocates descended on the Hill for EDC National Lobby Day to share their stories with Members of Congress and staff about why we need the FREED Act. Since then we hope you've continued to be inspired by your advocacy efforts --they made an impact.
The forward momentum we began generating on EDC National Lobby Day needs to continue if we want to see the FREED Act passed. Here are three effective and important ways you can help continue moving the FREED Act forward:

One --participate in our Letter-Writing Campaign (details below)

Two --ask at least 10 of your family and friends to participate in this Letter Writing Campaign. We have had Members of Congress sign onto the FREED Act after receiving just one letter from a constituent.

Three --Tweet and "share" on FB about the FREED Act and this blog. So many, including providers and sufferers and parents and caregivers, do not yet know about the FREED Act. We need to work together to get the word out about FREED. Imagine if every constituent who has been affected by an eating disorder participated in our Letter Writing campaign? Members of Congress would then clearly see that Eating Disorders are serious, there is hope, and they CAN make a difference by seeing that the FREED Act gets signed into law as soon as possible.

Let's continue our momentum, using the power of our collective voices to: Stand up, Believe, Make a Difference! ~ With sincere thanks to each of you for all the time and energy you dedicate to helping pass FREED. yours from the Hill, Kathleen

LETTER WRITING CAMPAIGN DETAILS:

How? Call your Member of Congress' office in DC and ask to speak to the person who handles eating disorders or related issues. Normally you will be asked to leave a message for that person (oftentimes that person is referred to as the "Health LA"). When you leave your message, state that you are a constituent and that you would like to talk with them about eating disorders and the FREED Act. Leave your name and number (speak slowly and clearly), and ask for a return call, or an email. <--Oftentimes the staff member will state their email address within their voicemail recording so be ready to take down their email address and then in your message, let them know you will follow-up with an email. If you do end up emailing the staffer, please see the Sample Letter on the EDC Facebook page and/or website for ideas of how to draft your message.http://www.eatingdisorderscoalition.org/letter-writing-campaign.htm

Keep your email message to what would be a one-page letter. When you tailor the sample letter to be personal, you are welcome to include something about the recent NYTimes article, such as, "A couple of weeks ago individuals who have been personally impacted by eating disorders were on the Hill sharing their stories and requested that your boss sign on as a cosponsor of the Federal Response to Eliminate Eating Disorders (FREED) Act, H.R. 1448/S 481. I wanted to bring your attention to an article that was on the front page of the New York Times on October 14, 2011 regarding the serious issues individuals with eating disorders are facing with getting insurance coverage. This story further reinforces the importance of ensuring that insurance companies provide coverage for eating disorders, an issue that the FREED Act would address. The New York Times front page story:http://www.nytimes.com/2011/10/14/business/ruling-offers-hope-to-eating-disorder-sufferers.html?_r=1

On your emails to staff, please cc: kmacdonald@eatingdisorderscoalition.org so that we can help you follow-up.

To find out who your Representative is go to: http://www.house.gov/ and enter in your zipcode; To find out who your Senators are go to: www.senate.gov and search for your State.

A great boost for our efforts to Hold Insurance Companies Accountable.

2011-10-14T11:58:00.000-07:00

Dear friends,

We applaud the NY Times for its article on eating disorders and residential treatment that appeared on the front page today. The EDC is thrilled that we succeeded, along with others, in urging the NY Times to address the growing challenge people with eating disorders face in accessing residential care. The EDC is actively working to change the current trend of insurance companies to refuse coverage for eating disorders treatment through the FREED Act, which would REQUIRE insurance companies to cover treatment for eating disorders according to the APA Guidelines.

The EDC applauds Lisa Kantor, Bruce Nagel, Elizabeth Wrobel and other attorneys who are suing insurance companies that violate state and federal laws by refusing to cover medically necessary eating disorders treatment. If you have been denied coverage for eating disorders treatment we want to hear from you. Email us at EDCHoldsInsuranceAccountable@yahoo.com

To read the article go to www.nytimes.com. It is on the front page!

Jeanine Cogan, Ph.D.
Policy Director
Eating Disorders Coalition
www.eatingdisorderscoalition.org
202-352-3208

EDC Advocate shares her experience with lobby day last week. Thank you Taylor Meneley for your beautiful poem!

2011-10-11T10:37:00.000-07:00

Past and Present

We were in the 8th grade.

We were 13 years old.

We were best friends.

We would hang out with the guys.

We were the normal teenage girls.

We would stand in front of the mirror together.

We would do our hair in a different way and try new makeup.

We stood there together trashing our bodies.

We began to struggle; together, each in our own way.

We struggled together in a silent understanding.

We listened to media and our peers.

We saw imperfection.

We had no allies to tell us differently.

We turned 14.

We graduated from 8th grade.

We went to Washington DC together on our 8th grade trip.

We laughed.

We cried.

We talked.

We heard the pain each of us felt.

We heard how those struggles had led us into a darkness with no visible light.

We didn’t know how deep into the darkness we would actually go.

We stopped struggling together in a silent understanding.

We began to struggle alone.

We lost each other.

We started high school.

We missed the fun.

We saw no meaning to life.

We lost our way.

Now, we are seniors.

Now, we are 18.

Now is present day.

We are back together.

We are best friends.

We return to Washington DC.

We see more light than darkness.

We no longer struggle in silence.

We found our voice.

We no longer say hateful things about ourselves.

We speak out against Eating Disorders.

We no longer let them define our lives.

We enjoy life.

We are found.

We can be FREED.

If you want to share your experience too we'd love to hear from you. Please email us at JeanineCogan@starpower.net

Thank You to EDN of Maryland

2011-09-27T01:54:00.001-07:00

This past Sunday I had the humbling privilege to speak at the 2nd Annual EDN of Maryland Walkathon, "Be Beautiful...Be YOU! ~ Walking to promote positive body image for everyBODY!"
It was my 2nd time presenting at the EDN Walkathon and I was grateful for the opportunity to inspire hope and encourage advocacy in those affected by eating disorders. I was also thrilled to spend the morning connecting with other ED activists (and their dogs ;-)!
Pictures from the Walkathon can be found on EDN of Maryland's Facebook page: https://www.facebook.com/pages/EDN-of-Maryland/113984794238

The EDC welcomes opportunities to connect with eating disorder organizations in our efforts to advance the federal recognition of eating disorders as a public health priority; thank you to Sharon Peterson for making this possible via the Walkathon. ~ I hope to see some of yesterday's participants at our EDC National Lobby Day next Tuesday, October 4th!

Thank you for the gift of meeting each of you, and thank you for seeking freedom from the grips of an eating disorder, especially those family members who are helping their loved ones seek freedom. Remember to believe in the hope for life and health restored after the recovery-process.

with care, Kathleen

For more information about EDC National Lobby Day, please visit:
https://www.facebook.com/pages/Eating-Disorders-Coalition/186592083884
www.eatingdisorderscoalition.org

For more information on The FREED Act, please visit:
http://eatingdisorderscoalition.blogspot.com/2011/07/what-is-freed-act.html

How to Document Evidence Based Treatment to Maximize Insurance Reimbursement

2011-09-23T11:07:00.000-07:00

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Lisa Kantor's Online Event with iaedp

As a service to our members we are streaming, on demand, Attorney Lisa's Symposium 2011 presentation on How to Document Evidence Based Treatment to Maximize Insurance Reimbursement. This encore presentation will be followed by a live teleconference call with Lisa on Tuesday, Sept 27 at 7 pm ET/6 pm CT/5 pm MT/4 pm PT for an update and to answer your additional questions. You may watch the 90 minute presentation anytime (at your convenience) starting today.

If you wish to attend the teleconference call, you must register and we ask only those who can attend "live" register for the conference call. Attendance on the call will be limited.

To view the video you must have Windows Media Player. If the version on your computer is not up to date, you may be asked to update it or download the program but the links to do so are provided on the video page. After watching the video, if you want to submit a question to be answered by Lisa on the live teleconference, please submit those questions to iaedpmembers@earthlink.net.

Download Lisa's handouts and materials for this course.

LINKS:

Video: http://player.netromedia.com/?ID=5a57395a-560a-4073-9562-13acf1b7f32c&path=/IAEDPKantor in wmv.wmv

Teleconference Registration: http://myaccount.maestroconference.com/conference/register/XVQ38AL38L6GVOVQ

Handouts:

http://www.kantorlaw.net/Areas_of_Practice/Eating_Disorders/2011_IAEDP_Materials.aspx

Course Description:

When seeking insurance benefits for eating disorder treatment, a provider’s treatment records will be the foundation for establishing medically necessity for admission and continued treatment. Evidence-based treatment records must show plans of care, symptoms, and objective evidence that satisfy an insurance company’s criteria for admission and continued care. The presentation will review the criteria from insurance companies for treatment of eating disorders and explain how evidence-based treatment records can be documented to best maximize the client’s available insurance benefits.

At the end of this presentation, participants should have an understanding of

1. The criteria used by insurance companies to determine whether benefits are payable for eating disorder treatment;

2. How insurance companies apply their criteria to determine whether benefits are payable for eating disorder treatment; and

3. How providers can document their evidence-based treatment to satisfy the criteria of insurance companies and maximize the client’s insurance benefits.

This is an excellent opportunity for staff training! Hook up an LCD projector, go to the streaming site, and voila!

EDC Applauds F.E.A.S.T.'s Upcoming Conference

2011-09-19T06:51:00.000-07:00

The Eating Disorders Coalition for Research, Policy & Action (EDC) congratulates the members of the F.E.A.S.T. Board of Directors on their upcoming conference in November, “The Map Ahead” where the Parent Community Charts A New Course For Activism, Treatment, and Research of Eating Disorders.

How exciting and appropriate that this conference puts mothers and fathers and other family members of those suffering from eating disorders front and center rather than on the fringes. As the first international eating disorders conference organized by parents this is indeed an historic event. We applaud you for your vision and conviction.

We look forward to being part of the rich conversations and urge others to attend this empowering conference.

A hearty congratulations to all involved in the realization of this inspiring vision!

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

California 9th Circuit Court of Appeal decision in Harlick - Mental Health Parity applies and Blue Shield must pay for residential treatment of eating disorder

2011-09-06T10:05:00.000-07:00

California 9th Circuit Court of Appeal decision in Harlick - Mental Health Parity applies and Blue Shield must pay for residential treatment of eating disorder

The EDC applauds and commends Lisa Kantor, LLP for her huge victory in California! She represented Jeanene Harlick against Blue Shield who refused to pay for her residential treatment. The case was decided by the 9th Circuit Court of Appeal in California. The Court found that the California Mental Health Parity Act requires Blue Shield to pay for residential treatment for an eating disorder.

A few excerpts from the OPINION as follows:

'OPINION

W. FLETCHER, Circuit Judge:

Plaintiff Jeanene Harlick suffers from anorexia nervosa. The question before us is whether Blue Shield was required to pay for her care at a residential treatment facility, either under the terms of her insurance plan or under California’s Mental Health Parity Act. We conclude that her insurance plan does not so require, but that the Mental Health Parity Act does."

For the reasons that follow, we conclude that the Mental Health Parity Act requires that a plan within the scope of the Act provide all “medically necessary treatment” for “severe mental illnesses,” and that Harlick’s residential care at Castle- wood was medically necessary.

1. Overview of the Act

The California Mental Health Parity Act (“Parity Act” or “Act”) was enacted in 1999. In enacting the statute, the HARLICK v. BLUE SHIELD OF CALIFORNIA

California legislature found that “[m]ost private health insur- ance policies provide coverage for mental illness at levels far below coverage for other physical illnesses.” 1999 Cal. Legis. Serv. ch. 534 (A.B.88), § 1 (West). The legislature further found that coverage limitations had resulted in inadequate treatment of mental illnesses, causing “relapse and untold suf- fering” for people with treatable mental illnesses, as well as increases in homelessness, increases in crime, and significant demands on the state budget. Id.

To combat this disparity, the Parity Act provides, in perti- nent part:

(a) Every health care service plan contract issued, amended, or renewed on or after July 1, 2000, that provides hospital, medical, or surgical coverage shall provide coverage for the diagnosis and medically necessary treatment of severe mental illnesses of a person of any age . . . under the same terms and con- ditions applied to other medical conditions as speci- fied in subdivision (c).

The EDC supported an Amicus Brief submitted by the International Association of Eating Disorders in support of residential treatment as a necessary step in the continuum of care. See the brief below.

IN THE UNITED STATES COURT OF APPEALS FOR THE NINTH CIRCUIT

JEANENE HARLICK

MOTION BY EATING DISORDERS COALITION FOR RESEARCH, POLICY AND ACTION (“EDC”) FOR LEAVE TO JOIN BRIEF OF AMICUS CURIAE INTERNATIONAL ASSOCIATION OF EATING DISORDERS PROFESSIONALS (“IAEDP”) IN SUPPORT OF PLAINTIFF/APPELLANT AND REVERSAL OF THE UNDERLYING JUDGMENT

The Eating Disorders Coalition for Research, Policy and Action (“EDC”) respectfully moves this Court, pursuant to Federal Rule of Appellate Procedure 29, for leave to join the brief previously filed by amicus curiae International Association of Eating Disorders (“IAEDP”). (IAEDP’s motion for leave to file a brief was concurrently filed with its brief on November 1, 2010, and was referred

California (3:08-CV-03651-SCto the Court’s merits panel on November 17, 2010.) EDC does not wish to file its own separate brief; it only wishes to join the brief previously filed by IAEDP.

Like IAEDP, EDC is a non-profit organization committed to advancing the interests of those afflicted with eating disorders. EDC is comprised of more than thirty organizations, institutions, and programs, including IAEDP. EDC is primarily committed to encouraging the federal recognition of eating disorders as a public health priority. EDC endeavors to persuade Congress and other federal entities to (1) increase resources for research, education, prevention, and improved training; (2) promote federal support for improved access to care; (3) promote the national awareness of eating disorders as a public health problem; and (4) promote initiatives that support the healthy development of children.

Like IAEDP, EDC believes that eating disorders are a widespread, misunderstood, and often overlooked public health problem in the United States. Studies show that approximately eleven million Americans suffer from an eating disorder, nearly half of all Americans personally know someone with an eating disorder, and anorexia nervosa is the third most common chronic illness among adolescents.

Experts in the field of eating disorder treatment have determined that residential treatment is an essential part of the spectrum of appropriate medical care for those suffering from eating disorders. As a result, EDC believes that such care, like any medically necessary medical care, should be covered by insurance. EDC is concerned that the judgment in this case, if upheld by the Court, would inevitably result in decreased access to residential care by eating disorder patients. Such a result would not only endanger the health of patients, but also increase the total cost of treatment as those patients are forced to interrupt their care and change health care providers.

Thus, EDC, like IAEDP, contends that access to appropriate treatment, including residential care covered by insurance, is of critical importance not only to patients but to the health care system as a whole. As a result, EDC hereby seeks to join amicus curiae IAEDP’s brief in support of Plaintiff/Appellant’s brief to reverse the underlying judgment.

---------------------------

We want to hear from you: Join the Campaign to Hold Insurance Companies Accountable

The EDC will continue to partner with Lisa Kantor and other lawyers working to Hold Insurance Companies Accountable. Please join our campaign. If you have been denied residential treatment for eating disorders we want to hear from you. Email us at EDCHoldsInsuranceAccountable@yahoo.com

"So What Exactly Does the EDC Do?"

2011-08-26T05:28:00.001-07:00

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"

2011-08-19T12:13:00.000-07:00

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

2011-08-17T09:53:00.000-07:00

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

2011-08-12T11:54:00.000-07:00

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:

2011-07-25T10:10:00.000-07:00

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

2011-07-25T09:34:00.000-07:00

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

2011-07-19T14:46:00.000-07:00

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.

What is the FREED Act?

2011-07-16T09:51:00.000-07:00

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: www.thomas.gov 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 (http://www.eatingdisorderscoalition.org/join-renew.htm)
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: www.thomas.gov 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: http://youtu.be/mEJL2Uuv-oQ

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

2011-07-13T17:07:00.000-07:00

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
Media 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

Athletic trainers stress safe weight loss methods - USATODAY.com

2011-06-21T07:32:00.000-07:00

Athletic trainers stress safe weight loss methods - USATODAY.com

Eating Disorders Coalition News and Information

24 Hours to Make a Difference

Action Alert -Petition to End Discrimination

from BEDA --

Why This Is Important

EDC Addresses All Treatment Denials

use your voice -Action Alert

Over 200 Respond to HHS Action Alert! Thank You for Your Help

Important Action Alert!

The Eating Disorders Coalition Speaks Out

EDC response to NYTimes article

3 Ways To Help Move The FREED Act Forward

A great boost for our efforts to Hold Insurance Companies Accountable.

EDC Advocate shares her experience with lobby day last week. Thank you Taylor Meneley for your beautiful poem!

Thank You to EDN of Maryland

How to Document Evidence Based Treatment to Maximize Insurance Reimbursement

\\
Lisa Kantor's Online Event with iaedp

EDC Applauds F.E.A.S.T.'s Upcoming Conference

California 9th Circuit Court of Appeal decision in Harlick - Mental Health Parity applies and Blue Shield must pay for residential treatment of eating disorder

California 9th Circuit Court of Appeal decision in Harlick - Mental Health Parity applies and Blue Shield must pay for residential treatment of eating disorder

"So What Exactly Does the EDC Do?"

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

The Latest Health Care Court Case

EDC Policy Assistant to speak at The Emily Program

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

EDC Junior Board Fundraiser

Pre Existing Conditions & Insurance

What is the FREED Act?

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

Athletic trainers stress safe weight loss methods - USATODAY.com

Eating Disorders Coalition News and Information

24 Hours to Make a Difference

Action Alert -Petition to End Discrimination

from BEDA --

Why This Is Important

EDC Addresses All Treatment Denials

use your voice -Action Alert

Over 200 Respond to HHS Action Alert! Thank You for Your Help

Important Action Alert!

The Eating Disorders Coalition Speaks Out

EDC response to NYTimes article

3 Ways To Help Move The FREED Act Forward

A great boost for our efforts to Hold Insurance Companies Accountable.

EDC Advocate shares her experience with lobby day last week. Thank you Taylor Meneley for your beautiful poem!

Thank You to EDN of Maryland

How to Document Evidence Based Treatment to Maximize Insurance Reimbursement

\\Lisa Kantor's Online Event with iaedp

EDC Applauds F.E.A.S.T.'s Upcoming Conference

California 9th Circuit Court of Appeal decision in Harlick - Mental Health Parity applies and Blue Shield must pay for residential treatment of eating disorder

California 9th Circuit Court of Appeal decision in Harlick - Mental Health Parity applies and Blue Shield must pay for residential treatment of eating disorder

"So What Exactly Does the EDC Do?"

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

The Latest Health Care Court Case

EDC Policy Assistant to speak at The Emily Program

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

EDC Junior Board Fundraiser

Pre Existing Conditions & Insurance

What is the FREED Act?

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

Athletic trainers stress safe weight loss methods - USATODAY.com

\\
Lisa Kantor's Online Event with iaedp