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Eating Disorders Coalition

 

As many of you may already be aware of, on February 25, 2009 the Eating Disorders Coalition along with the FREED Foundation and others advocating the FREED Act – The Federal Response to Eliminate Eating Disorders – H.R. 1193, successfully were able to get the bill to the House floor.

The next important step towards getting the bill passed will be taking place on April 1-2, 2009 when EDC holds their annual Lobby Day gathering.

If you are not able to attend this event and/or additionally would like to add your voice towards enacting this important and comprehensive legislation for eating disorders that promotes research, treatment, education and prevention programs please write to your state representatives urging them to learn more and help support the passing of the FREED Act.

Below is a sample letter that can be modified and added with your personal message:

Your Name
Street Address
City

March –, 2009

The Honorable First Name Last Name
United States House of Representatives
Washington, DC 20515

Dear Congressman(woman) –,

As a member of the Eating Disorders Coalition and someone who has personally suffered the impact of living with an eating disorder, I am writing you today to ask your support for the Federal Response to Eliminate Eating
Disorders Act (H.R. 1193).

This is the first comprehensive eating
disorders bill in the history of Congress. By focusing on research, education, prevention and treatment this bill is a beacon of hope for the millions of people currently suffering from an eating disorder.

It is estimated that 9 million Americans suffer from anorexia, bulimia, binge eating and other eating disorders. Eating disorders are associated with a host of medical complications including cardiac arrhythmia, cognitive impairment, osteoporosis, infertility, heart failure and most seriously death. In fact, anorexia nervosa has the highest death rate of all mental disorders, upwards of 20%.

Research shows that eating disorders can be successfully overcome with early detection and adequate and appropriate treatment. Unfortunately eating disorders are often undiagnosed by health professionals and/or access to treatment is limited. Less than half of all people with eating disorders receive the treatment needed.

The Federal Response to Eliminate Eating Disorders (the FREED Act) can change these state of affairs. H.R. 1193 will save lives by providing more funds for research so that we can better understand, prevent and treat eating disorders, grant programs that provide training for health professionals, and steps toward better access to treatment coverage.

We urge you to sign on as a cosponsor of the FREED Act. I look forward to
hearing from you. Thank you again for your consideration.

Warm regards,

*You can make a difference! Merci!*
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With the passing of Mental Health Parity many who suffer from eating disorders will finally (albeit slowly-see how your state ranks) be able to begin receiving adequate insurance coverage and necessary treatment needed for long term recovery goals. Great progress without a doubt.

But there is a Judge by the honorable name Faith Hochberg who is rockin‘ the houses of Aetna, Horizon- Blue Cross/Blue Shield who has recently ruled:

                           __________________________________________________

– approval Tuesday to a class action settlement that requires Aetna Insurance Co. to provide about $300,000 in back payments to 119 insureds whose benefits for eating disorders were limited.

The company also promised to treat future claims more liberally and make internal reforms to resolve disputes over benefits for eating disorders.

U.S. District Judge Faith Hochberg also approved a $350,000 payment to the plaintiffs’ class counsel,
Nagel Rice in Roseland, N.J. All of the fee comes from Aetna, not out of a percentage of the class members’ recovery.

“It makes perfect sense to me,” Hochberg said after ruling that
the settlement in De Vito v. Aetna, 07-418, was fair, reasonable and adequate.

The settlement requires the company to treat some claims for anorexia and bulimia as it does claims for biologically based mental illnesses, such as schizophrenia. That makes a class of eating-disorder patients eligible for eight months of treatment, compared with 20 outpatient visits per calendar year and 30 days of inpatient benefits.

The 119 insureds who will receive checks were those who had at least one claim limited by Aetna’s practices during the past seven years. And in the future, Aetna will treat anorexia and bulimia the same way it does BBMIs.

In addition, anyone Aetna determines to have no medical necessity for enhanced eating-disorder treatment during the next four years would have the right to elect binding review by an independent eating-disorder specialist selected with input from the plaintiffs’ lawyers.

At the same time, though, the settlement affects only patients in “fully insured” plans — those funded by employers. Enrollees in self-funded plans, such as employee welfare and state worker health benefits programs, are not covered by the settlement and would not automatically benefit from the more liberal process.

Nagel estimates that about 530,000 of Aetna’s 1.2 million insureds are eligible for the new claims procedures and that the process could be worth up to $2 million in recoveries by the insureds.

Law.com

 

As many of us already know recovering from an eating disorder takes time, patience, perseverance and an added sense of humor never hurts either. This journey of Hope, Change and Healing can be a long road, but well worth every step! And when a sufferer is not able to obtain the adequate and experienced care that is required for ED treatment this journey can seem like climbing the Himalayas.

Families and sufferers can have a voice and advocate for the care and support they deserve, but it takes some persistence and not taking “no” for an answer but digging deeper and rooting out the resources and connections one needs to help along this road.

One courageous and honorable teen diagnosed with anorexia has taken such a step in Northern Ireland, and is demanding change all the way to the courts to get the care she needs- bravo!

With fire-in-the-heart like that, the sky is the limit to what can be possible so that everyone suffering from this illness will eventually have access and covered care that they need to fight the battle and win their full and healthy lives back.

-shanti

President Signs Mental Health Parity Legislation!

Thanks to the thousands of Advocacy Network members who lent tireless support to our years-long effort to win enactment of legislation to end discrimination in mental health coverage. Today we won! After House passage of the Emergency Economic Stabilization Act today, 263-171, President Bush has at last signed mental health/addiction parity into law.
Click here to learn more about the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008.

-Fantastic news worth celebrating!

 

Vrishabha- the sacred bull of Lord Shiva… or more widely known- Taurus, the Bull reigns this month of May.  Our daughter turns 14 on this May 20th, and she definitely characterizes the nature of the bold, loyal, and very stubborn Taurus!

Before being diagnosed with Anorexia, birthday’s had always been a festive and richly tasting  affair.  And while we’ll continue partaking in this annual delight, it’s still a bit difficult for her to freely enjoy what never took a second guess years past.  She’s committed to challenging herself, though there are days she’s not too happy to do so, and will boldly (envision the Taurus with plumes of smoke flaring from nostrils!) make that clear– well, what were you like at 14, minus an eating disorder? 

I’m forever grateful to those who also remain equally, if not at times more, committed to helping support our daughter in keeping focus upon her recovery.  Recovery is not easy for sufferers, and parents still get  bawked a’ plenty and treated with disdain, misjudgment, and left to the side when there requires a much more encompassing circle to complete for true healing and whole-ness to take place.  And dualistically, sufferers also need their own space, their own pace to regain their true Selves back once nutritionally and weight stabilized– this requires alot of Love, patience, perseverance and sometimes a compassionately coordinated “team” all working together.  It makes me think of the Buddhist practice of mindfulness and the use of “a two-handed practice”:

_____

I can sit in my predicament as a witness, not as a plaintiff or judge: ‘Here I am in this situation and I sit squarely in it and breathe into it.  At the same time, I am aware that I can handle this and get through it without becoming devastated.  I can trust my competence neither to become dramatically overwhelmed nor to be stoically untouched.  This sense of competence frees me from fear, since fear thrives on powerlessness.  I imagine myself holding my predicament in one hand and my power to work with it in the other.  One hand is serenely mindful; one is courageously working.  When I hold both realities this way, I am agreeable to things as they are, and I am doing all I can to change them for the better as well.”   -D. Richo 

_____

This resonates with me deeply as a parent and the complexities illnesses like eating disorders present to us.  Now if only we can collectively and universally have provided the very best in evidence-based, highest standard of quality care of treating eating disorders and supporting families in such a comprehensively and equally accessible manner– that would be my wish!

Our daughter has many “wishes” and dreams she wants to pursue.  We simply want to wish her a very Happy Birthday, happy 14th Year, to continued Health and vitality… and to a courageous healthy-stubborn side that can be an anchor for her when difficulties and stress arise.  Knowing she can reach out and ask for help, she’s worth every ounce of her hard work on the road to recovery she has traveled thus far, and that we Love her very, very much!

-XOXO Mom*Dad*Big’Sis

 

This is a day of promise –
Of hopefulness, laughter, and cheer,
For this is a day of remembering
The good things that happened all year –
A day for reflecting on memories
Shared with friends and with family, too,
Who were so much a part
of the joys in your heart
And the love that you felt
all year through-
This is a day of promise
Of the beauty and warmth life can hold,
And of new dreams to dream
and more love to share
Through a year that’s about to unfold.

-Emily Matthews

APF/Getty Images  Bertrand Guay

There is quite a bit of debate heating up lately, even over at ATDT parents are sharing their thoughts on this topic, regarding recent legistlation created by France lawmaker Valerie Boyer that France is passing towards imposing strict fines, even imprisonment against the proliferation and promotion of “pro-ana/mia” within websites, media images, the fashion industry and beyond that continue to hightlight clearly unhealthy anorexic/ED’d-looking, emaciated ultra-thin bodies– “legislating body weight” some are finger-waging. 

The reviews and feedback are certainly mixed, some downright misinformedstiil -and so sorely one-sided which to me only illuminates just how complex these issues are; and more importantly  how much more of this conversation and dialogue needs to keep happening and developing.

I haven’t delved into a full exploration of my opinions on this yet, but I do think while we can’t police every site, ban every image, twisted ideal there certainly is something that we are all responding and reacting to when we see someone who looks so severely malnourished, skeletal and unwell. 

As a mother of a daughter who suffers from Anorexia Nerovsa I do have an immediate heartwrenching reaction to this issue, and do believe there is not just a “personal” responsiblity but public and social conscience we all need to be connected to and address at some basic level without turning a blind-eye and pretending none of this has any impact on society whatsoever– clearly it does.

         

 

Some incredible individuals and parent advocates have been hard at work the past two days in Washington working with legislators on Capital Hill for the annual Eating Disorders Coalition Lobby Day to push forth further measures and legislation in the continuation to further progress within treatment, research, prevention and education of eating disorders. 

This is vital and necessary work.  I for one am so very grateful, since I was not able to attend, for all of these individuals who have committed themselves towards improving the lives of those affected by this devastating illness and the families that are doing so much of this work solo, without much support, treatment resources, and clinicians adequately trained to best help their loves ones. 

Thank you EDC and its sponsors, Ms Laura Collins— you are the best!

 

virtaka

 

Facing the bluntness of reality is the highest form of

sanity and enlightened vision… Devotion proceeds

through various stages of unmasking until we reach

the point of seeing the world directly and simply

without imposing our fabrications… There may

be a sense of being lost or exposed, a sense of vulnerability.

That is simply a sign that ego is losing its grip

on its territory; it is not a threat.

 

-Chogyam Trungpa Rinpoche

Advocacy

“It’s about opening up the doors and ending the shadow of discrimination against the mentally ill.”

-Patrick Kennedy 

Today’s news is quite uplifting.   And the 268-148 vote does speak to the dire need to continue towards enacting mental-health parity and mandating health insurance coverage equal to that of physical illness for mental health  and addiction.  I think Paul Wellstone would be encouraged to see some progress being made after nearly a decade of back and forth bi-partisan bickering and huge corporate influence , (and currently, to no one’s surprise, big-ph-arm Eli Lilly  is really throwing a tantrum!), to strangle this vital legislation.

And there are plenty of critics who are rallying this victory as “mental-health insanity” and clearly looking only at their own financial dunk, but it’s truly time to stop stigmatizing those with mental illness who clearly need the same standard of quality care and treatment that any sane society would not withhold or financially ruin one with personally while working towards full health, healing and recovery.

I, unfortunately live in a state that does not currently have mental-health parity- yet.  But I was impressed to read an in depth study done last spring by the La Follette School of Public Affairs in our state, that despite not having all the conclusive data to make absolute recommendations regarding mental-health parity, has incredibly convincing and thought-provoking details putting to bunk some of the primary reasoning against implementing mental-health parity that I would encourage anyone interested in advocating for mental health disparity to read.   These studies really can be applied and adapted for further critique and implemented across all states, so that we will eventually see more than thirteen states that have adopted mental-health parity law.

-shanti

NEDAW         So many great happenings during National Eating Disorders Awareness Week 2008 – hope everyone is able to partake in some NEDAW events in your corresponding local areas.  This year’s theme,  much like last year’s,  is still quite pivotal and we can all do our share to spread awareness,  gently and compassionately encourage those who need support and treatment to take those vital initial steps with our love and backing.

Reach out, celebrate all our diverse shapes and sizes, EMBRACE each other, and share our stories- spread the word, be heard, dispel misconceptions and myths that still surround eating disorders and those that suffer- change can happen even with the simplest and smallest of steps!

Laura Collins, as always, an incredible inspiration, advocate, and Mom has posted some great commentary on the Congressional Briefing for the Eating Disorders Coalition with Dr Cynthia Bulik’s wisdom- Power to the People!

 XO

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