Reflections on EDC Nat'l Lobby Day

Dear friends and supporters of the Eating Disorders Coalition,

EDC Advocates --working to pass the FREED Act!

In some ways EDC National Lobby Day resembles a wedding celebration. Months and months go into preparing for one day of celebration, details are stressed over, excitement builds, and then the day you’ve been planning for is over and your friends depart and go back to their respective ‘every-day’ lives. And like a wedding, when EDC National Lobby Day is over and advocates depart, they leave with a fire in their hearts, forever changed.

National Lobby Day events began Monday with an evening reception at the Stewart Mott House on Capitol Hill. EDC President Lisa Lilenfeld welcomed EDC Advocates and invited them to enjoy food and drink as they mingled and met new advocates, as well as greeted old friends. Midway into the reception, EDC Policy Director, Jeanine Cogan, introduced the EDC’s newest Policy Team member, Al Guida from Guide Consulting. Al invited each EDC advocate to introduce themselves and also share a few words about what brought them to DC to participate in EDC National Lobby Day. The stories shared around the room were each unique, but all connected in the heartfelt dedication as each advocate described their commitment to being part of the movement that will eliminate eating disorders. We celebrated our commitment to be advocates.

April 26, 2012: EDC National Lobby Day  -- one of best yet. The day began with Basic Training where all first time advocates came together early in the morning to learn more about what it means to be a part of EDC Lobby Day, as well as to help ease ‘nerves’ that tend to come with being on the Hill for the first time.  After Basic Training, the newly trained EDC Advocates merged with veteran EDC Advocates and we melded into one large group of impassioned and powerful voices. The message we shared with Members of Congress and their staff was that: Eating Disorders are serious; There is Hope; Congress CAN make a difference! ~

We headed over to the Capitol for a group photo and then went to the Dirksen Senate Office Building for lunch and the EDC Congressional Briefing, “The Faces of Eating Disorders: Will the Real Person with an Eating Disorder Please Stand Up”. The Congressional Briefing educated Members of Congress and their staff about the fact that eating disorders do not discriminate.  They effect people of all ages, races, ethnicities, genders, classes, sexual orientations and even political parties. Speakers were: Rachel DeYoung, a biracial woman who suffered and recovered from her eating disorder; Sarah Yeung, an immigrant from Hong Kong who developed an eating disorder once she moved to the U.S.; Tracy  Smith, a mom whose daughter Reanna died while waiting for access to treatment; and Dr. Ted Weltzin who specializes in working with men and boys who suffer from eating disorders. The stories were each powerful and left an impact. After the briefing 78 individual advocates from 22 different states, headed out to meet with their Members of Congress and staff, delivering the urgent and heartfelt message that: Eating Disorders are serious; There is Hope; Congress can make a difference by passing the Federal Response to Eliminate Eating Disorders Act (FREED Act).

EDC National Lobby Day concluded with a debrief meeting, hosted by FREED Act champion Congresswoman Tammy Baldwin’s staff. At the debrief, EDC Advocates shared stories from the day’s meetings. This was a notable EDC National Lobby Day as one advocate after another shared the news that their Member of Congress agreed to sign on to the FREED Act ! The FREED Act already has three new co-sponsors (with more to come)! We heard stories of Staff Members who attended the EDC’s Congressional Briefing and were moved to tears because of the stories shared. We heard about a Member of Congress who called an EDC advocate who wasn’t able to come to the Hill for lobby day. And we even had Members of Congress tweeting about their meetings with EDC advocates! TOGETHER WE ARE MAKING AN IMPACT!

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EDC Advocate shares her FREED sign

Eventually we had to conclude our day –feet were tired, bellies were hungry, and advocates were in need of rest and reflection. After many hugs, we departed the Hill, ending another EDC National Lobby Day, forever changed. And though we are no longer in person with one another, we remain a collective voice, as afterall we are the Eating Disorders COALITION. As an individual advocate, you are a member of the Coalition and you are now part of a collective voice and movement on the Hill; you are now a part of the movement that will change policy at the Federal level –a daunting task that is only possible because of you. As a member of the Coalition, you now have a way to use your voice in an organized way that will help you fight back against the many insidious ways an eating disorder might have impacted your life. As a member of the Coalition, you are part of a family of advocates who support you, and who are here to help you make a difference in the way eating disorders are addressed in our country. Each of you is a special part of a circle of hope and action, of a meaningful and powerful coalition – and your advocacy need not end simply because EDC National Lobby Day has concluded. ~ We encourage you to stay involved with us: go to the EDC website and sign-up to receive email Action Alerts; friend us on Facebook; send in your picture with your “I stand for the FREED Act because….” signs to kmacdonald@eatingdisorderscoalition.org; ask your friends, family, your treatment team, etc. to participate in our “Phone in for FREED” campaign (details on our Facebook page)  -- There are many ways for you to continue using your energy, your passion and your voice until the next EDC National Lobby Day and we are happy to help you do so! ~  If any of you have blogged about your experiences, please feel free to share those with us by emailing kmacdonald@eatingdisorderscoalition.org ; feel free to post your reflections and your pictures on our Facebook page, etc. We encourage you to stay in touch!

This EDC National Lobby Day has left an indelible impact on our hearts. We are reinvigorated because of each of you who took time off from work and school, who spent your hard earned money, and who each gave of your heart to help make this EDC National Lobby Day one of our best yet.

PS: huge shout-out to all our volunteers who make EDC National Lobby Day possible, including our Team Leaders: Matt Wetsel, Eileen Binkley, Gail Schoenbach, Lisa Lilenfeld, Johanna Kandel, Jillian Lampert, Deb Mellk, Alan Duffy, Carmen Cool, and Lisa Hail; Our “boots on the ground” volunteers Emily Suttle and Rachel DeYoung who hand-delivered EDC Congressional Briefing invitations to every single office of the Senate! And thank you to EDC photographer Jim Knapp for taking pictures and posting them on the EDC Facebook page. (We encourage advocates to go to our Facebook page and tag yourself in pictures--please tag only yourself) https://www.facebook.com/EatingDisordersCoalition Finally, special thanks to the Stewart R. Mott House for hosting our reception http://www.srmfoundation.org/AboutUs.html 

The "K&E Diet" is Wrong

Take a Stand Against the K & E Diet! 

The Eating Disorders Coalition encourages you to contact The Today Show to express your dismay at their recent coverage of the "K & E Diet", a diet that uses feeding tubes to promote rapid weight loss. By giving the "K & E Diet" such prime airtime The Today Show encouraged risky weight loss strategies. Fad diets and rapid weight loss are potentially dangerous. At least 1 in 4 people who goes on a diet develops eating disordered thoughts and behaviors.  Two out of 10 people with anorexia die of the disorder.  This is not a laughing matter.  The tragic reality is that some people suffering from eating disorders die because they can't get the feeding tube they need in order to survive because insurance companies all too often don't cover life saving eating disorder treatment.

We applaud CNN for their appropriate segment (see link below) on the Nasogastric Tubes this afternoon, so let's thank them for shining light on the dangers of this terrible practice which their Medical Ethicist calls, “stupid”. Let's thank CNN and ask The Today Show to follow suit!
http://cnn.com/video/data/2.0/video/health/2012/04/18/nr-feeding-tube-loose-weight.cnn.html

Here's what you can do: 

• Contact CNN and THANK THEM for responsibly addressing this issue: http://www.cnn.com/feedback/ 
• Contact The Today Show and ask that Kathie Lee apologize on-air for calling the dangerous diet trend "genius" (at 5:19 in video -below)
• Contact The Today Show ask them to bring on eating disorder experts to address the dangers of this quick-fix rapid-weight loss diet
• Share with them your personal opinion on why you feel making light of feeding tubes does a serious disservice to those suffering the deadliest of all mental health illnesses, eating disorders and ask MSNBC & The Today Show to feature a segment like CNN -responsibly addressing the dangers of this fad diet.

The Today Show & Kathie Lee/Hoda contact information:

• Kathie Lee & Hoda FACEBOOK page:  https://www.facebook.com/klgandhoda 
• Contact MSNBC (click on TODAY in the dropdown) http://www.msnbc.msn.com/id/10285339/

(Here is Kathie Lee and Hoda discussing the diet: see: 5:14 - 6:38 in video):
 http://today.msnbc.msn.com/id/29054368/    -- the video is graphic in nature (shows medical procedure of NG tube being inserted)

The EDC applauds former Senator Pete Domenici and Gordon Smith for writing this op-ed on mental health parity that appeared in the Washington Post on April 12, 2012. We urge the administration to issue final regulations to implement the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act.

Waiting for mental health parity

By Pete Domenici and Gordon H. Smith, Published: April 12

Every day across the United States, families struggle with the challenges of mental illness or substance abuse. The 68 million Americans with these issues include people of all income levels, all races and all political affiliations. Mental illness does not discriminate.

Often, the difference between being overwhelmed as a family or meeting the challenges head-on and making progress against the illness can be just one factor: access to meaningful health insurance. Even those who think they have quality health coverage can be overwhelmed when a loved one receives a diagnosis of mental illness or is a substance abuser. They discover that their health insurance does not cover needed services or that the out-of-pocket expenses are prohibitive and significantly more than what is charged for physical ailments.

In 2008, Congress passed and President George W. Bush signed the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act. This law, which garnered bipartisan support, requires that large group health plans and Medicaid managed-care plans provide coverage for mental or substance-use disorders on par with the coverage offered for physical ailments. But when any law is passed, the federal government must implement and enforce it to make its benefits and provisions a reality.

President Obama voted for the bill as a U.S. senator, and all indications are that he remains supportive. Yet regulatory action has stalled since 2010. The final rule that would provide clarity to the millions who have a mental illness or substance-use disorder, and to their employers, has not been issued. This has created uncertainty and confusion for employers over what they must cover and when parity applies.

For example, many health insurance plans still refuse to cover lifesaving treatment for eating disorders. Others create discriminatory barriers to care, such as imposing stricter prior-authorization requirements for mental health and addiction treatment than for medical benefits. Sadly, as underscored in a recent report by the assistant secretary for planning and evaluation at the U.S. Department of Health and Human Services, levels of care for evidence-based behavioral treatments, such as residential psychiatric services for children, are being eliminated because of uncertainty about what is required.

The most recent National Survey on Drug Use and Health, published last year, found that fewer than half of the 45.9 million adults with a mental illness receive treatment or counseling and that only 10 percent of the more than 23 million people who need help for a substance-use problem received any specialized treatment in 2010. Even more troubling is the fact that people with either disease have shorter life expectancies than most Americans; a 2006 study put the difference at 25 years.
 
The Obama administration should issue its final regulations to implement the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act. Doing so would allow employers to plan with certainty and stability — and would let families know that help will be there when they need it.

Parity and Disparity Coast to Coast: A Case Study

Parity and Disparity Coast to Coast: A Case Study

Posted By Kantor & Kantor on Mar 26, 2012 12:13pm PDT

Merriam-Webster defines par◦i◦ty as, "the quality or state of being equal or equivalent." Derived from the Latin word for equal, paritas, its origin dates back to 1608. Such lineage, however, has done little to integrate the concept of parity into the vocabulary and mind set of the health insurance industry when it comes to approving treatment for biologically based severe mental illnesses such as anorexia nervosa and bulimia.
Our client, Jane Doe, is a 21 year old young woman who suffers from anorexia, purging type, and alcohol abuse. She attempted to obtain precertification from her health plan, Value Options, to admit to residential treatment in California. Value Options denied Jane's request for precertification. The Explanation of Benefits gives no "explanation" as to why the treatment was not being covered other than indicating "0.00" under the "Allowed Amount." A close review of the claim notes in Value Option's claim file discloses, "NO MH BENEFITS FOR: RES," meaning, her plan does not provide any mental health benefits for residential treatment. Jane's Value Options' plan is based in New York. As a result, in order to determine her rights and Value Options' obligations under the plan, an analysis of New York's mental health parity law must be considered.
New York's law can be traced back to Timothy O'Clair, the youngest son of New York State Thruway Authority employee, Joe O'Clair. Timothy was diagnosed with depression, oppositional defiance disorder, and other mental illnesses early on in his life. The O'Clair family soon realized the disparity in Joe's health insurance: adequate benefits for physical illnesses and inadequate benefits for mental illnesses and treatment. The O'Clairs were not able to afford the constant treatment required by Timothy's mental illness.
On March 16, 2001, Timothy committed suicide. It was believed that if Timothy had the opportunity to receive more treatment, his suicide could have been prevented. The tragic reality of Timothy's death galvanized both the O'Clairs and the people of New York to rectify the disparate coverage for mental and physical illnesses in employer sponsored health plans. On December 22, 2006, Timothy's Law was born, when Governor George Pataki signed the new legislation. In short, Timothy's Law (as codified in NY Code §3221) requires equal coverage between mental and physical illnesses.
So, one would think that §3221 helps Jane. This law is expansive, filling 26 pages of single spaced type. It is not until page 15 that we find some guidance,
"(B) (i) Every insurer delivering a group…policy, in this state, which provides coverage for inpatient hospital care or coverage for physician services, shall provide comparable coverage for adults and children with biologically based mental illnesses…" (emphasis added)
So, what is considered "comparable coverage"? Jane's plan provides "inpatient" hospitalization coverage for physical illnesses. But Jane's plan denied benefits for "residential" treatment for her anorexia since it was not "inpatient" and as indicated by the plan, Jane did not meet its inpatient criteria, which was not eating disorder specific. "Comparable coverage" should include residential treatment, since residential treatment for eating disorders is the medically accepted method for treating this disease and thus the equivalent of inpatient care for physical illnesses. We are in the process of filing the appeal and will test the limits and interpretation of Timothy's Law as provided by Value Options.
The story is not over. Jane changed her health insurance carrier midway through her treatment to Anthem Blue Cross. Likewise, her new Anthem CalPERS plan does not specifically provide coverage for residential treatment for eating disorders. Anthem denied Jane's claim for her residential treatment indicating, "This is not a covered expense of the patient's plan." Fortunately, prior to Anthem issuing this denial, our office prevailed on this issue before the 9^th Circuit in, Harlick v. Blue Shield of California, 656 F. 3d 832 (9^th Cir. 2011) As a result, we are hopeful that Anthem Blue Cross will reconsider its denial of coverage for Jane's residential treatment on appeal.
In conclusion, although the laws of both New York and California require parity in the coverage and benefits provided for both physical illness and severe mental illness, the insurance companies are still attempting to ignore these laws and deny residential treatment.

EDC Board Member, Lisa Kantor, takes on Dr. Oz

Lisa Kantor, Member of the Board of Directors of the Eating Disorders Coalition, and the country's premier lawyer who advocates for patients with eating disorders who have been denied health insurance benefits for treatment, takes on Dr. Oz!

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Lisa S. Kantor: An Open Letter to Dr. Oz
By Lisa S. Kantor

Posted: 7:53pm on Mar 19, 2012; Modified: 7:58pm on Mar 19, 2012

LOS ANGELES, March 19, 2012 — /PRNewswire/ -- Along with countless professionals and families dealing with the physical, emotional and financial consequences of eating disorders, I am deeply disturbed by the way your recent program, "Dying to Be Thin: Meet the Skinniest Women in America," had the unintended effect of glamorizing the deadliest of all mental illnesses. Rather than documenting the tragedy associated with eating disorders and providing encouragement to sufferers to seek help, you perpetuated myths about the disease and provided harmful information to millions. I believe this show did more harm than good. As a physician, you have a responsibility to improve your coverage of eating disorders in future shows.

"Dying to Be Thin," while tantalizing, serves to perpetuate one of the deadliest misconceptions about eating disorders. People with eating disorders are not necessarily "skinny" or "thin," and certainly not everyone who dies from an eating disorder is underweight. In fact, many people die at a very normal weight, especially if they have bulimia. You mentioned on your show that the "more acute cases" were the "thinner" women. That myth is also dangerous to disseminate. Those who weigh less than others are not necessarily "more acute" than others at a "healthy weight." That misconception has long created stigmas associated with eating disorder sufferers and has often led to under-treatment by physicians who think that because a woman is not thin, she is not as acute. Your focus on thinness did a grave disservice by failing to educate your audience scientifically about what eating disorders really look like.

In giving air time to the Pro-Ana movement, you referred to it as "a dangerous new trend that helps women be skinny at any cost." The Pro-Ana movement is not new. Pro-Ana (and Pro-Mia) sites have been around since the dawn of the Internet. Far from being "trendy," they are a very dangerous facet of an eating disorder underground that preys on the mentally ill. Had you consulted an eating disorders expert, you would never have offered your audience direct access to the websites and their images. Studies show that doing so causes harm. One study, on college-aged women (none of whom had eating disorders), discovered that after viewing pro-eating disorders websites, 84% reduced their calorie intake by more than 2,000 calories per week. Only 56% of the women realized they were eating less. Results of the study also indicated that the women exposed to the pro-eating disorders website had decreases in self-esteem and perceived attractiveness.

My days are spent in and out of federal courts battling insurance companies that deny benefits for seriously ill women and men who seek adequate treatment for their diseases – even though a federal law and many state laws mandate that insurers provide similar levels of treatment for mental illnesses as they provide for physical illnesses. Shows such as the one you aired trivialize this disease and undermine the progress well-respected groups such as the International Association for Eating Disorders Professionals, the Eating Disorders Coalition, the National Eating Disorders Association, and the Binge Eating Disorder Association have achieved. Still, getting the national media to take eating disorders seriously without parading dangerously thin women across the television screen is about as difficult as getting an insurance company to pay for a therapeutic length of stay at a residential treatment facility.

It is hard for me to believe that either you or your staff did any legitimate research about eating disorders before planning the programs. Were you aware that professionals in the eating disorder field were in touch with producers at your show in recent months offering the benefits of their expertise free of charge should you plan to air segments about eating disorders? Those calls and e-mails appear to have been ignored.

You owe it to your many viewers to correct the harm your recent program caused. First, please remove all material from your website and blog that mentions the Pro-Ana movement. Second, work with some of the many excellent professionals at reputable facilities around the country to plan follow up segments to properly educate your audience about how people can recover from eating disorders and lead productive and fulfilled lives not centered on food. You have an opportunity to teach millions across the country, including other physicians who might watch your show, the real skinny about eating disorders. I hope you will do the right thing.

About Lisa S. Kantor

Lisa S. Kantor, a Los Angeles lawyer and member of the Board of Directors of the Eating Disorders Coalition, is the country's premier legal advocate for patients with eating disorders who have been denied health insurance benefits for treatment. In 2011, the 9th U.S. Circuit Court of Appeals ruled for her client in Harlick v. Blue Shield, creating one of the most influential decisions ever in mental health parity litigation and paving the way to making treatment and recovery for severe mental illnesses more attainable. For more information, go to http://www.kantorlaw.net/.
Read more here: http://www.bradenton.com/2012/03/19/3949249/lisa-s-kantor-an-open-letter-to.html#storylink=cpy

Great Letter from Advocate

Hi everyone --below is a letter from EDC advocate Rebekkah, to her Representative (Member of Congress in the House). Please take a look at her letter to see an example of how to personalize the Eating Disorders Coalition's "sample letter". We're looking forward to receiving many more cc'd letters in our inbox. We need millions more to write in if we want to pass the FREED Act. 
Go to: http://www.eatingdisorderscoalition.org/letter-writing-campaign.htm
for information on how you can write a letter, too! ~ Thank you, the EDC


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Dear Congressman Heck,

As a constituent of your district who has personally suffered from the living hell of an eating disorder, I am writing today to ask you to cosponsor the Federal Response to Eliminate Eating Disorders Act, (the FREED Act, H.R. 1448). The FREED Act is the first comprehensive bill in the history of Congress to address eating disorders. The FREED Act focuses on research, treatment, education and prevention of eating disorders and
serves as a beacon of hope for the millions of people in our country  currently suffering from binge eating disorder, anorexia, bulimia, and eating disorder not otherwise specified (EDNOS).

Estimates suggest that more than 11 million Americans suffer from eating disorders.  I am one of them.  I am one of those girls who lost herself, and almost her life.  More than once, I ended up in the hospital from
electrolyte imbalances and blood work that told the ER doctors that my  heart shouldn’t be beating.  More than once, I prayed and hoped that my heart would, in fact, stop beating.  And without recovery, without the
extensive treatment I had, those prayers would have been answered. 

I can write to you today because of the treatment I received.  In a month and a half I will be graduating law school, because of the treatment I  received.  Everyday I enjoy friendships and gratitude, because of the
treatment I received.  I am alive today because of the treatment I received.

Eating disorders affect every single system of the body and are associated  with serious medical complications including cardiac arrhythmia, cognitive  impairment, osteoporosis, infertility, heart failure and death. In fact,
left untreated anorexia nervosa has the highest death rate of all mental disorders, upwards of 20%. However, when a person suffering from anorexia  receives proper treatment, the death rate falls to between 2-3%.

Research demonstrates that eating disorders CAN be successfully overcome when early detection and adequate and appropriate treatment take place.  And I write to you as verification of that fact!
Unfortunately, at this point in time, eating disorders are all too often  undiagnosed or completely misdiagnosed by health professionals, and access to treatment is limited. Less than 1/2 of all people with eating disorders
receive the treatment they both need and deserve. The FREED Act will save lives by providing for better access to proper  treatment, research dollars to understand the etiology and effective  treatment of eating disorders, grant programs to ensure more medical health  professionals and school personnel be trained on eating disorders prevention and treatment, as well as PSA's to broaden awareness of eating disorders.

Currently the FREED Act has bipartisan support. I ask that you sign on today as a cosponsor of the FREED Act (HR 1448), as a cosponsor of hope, as this bill has the ability to save thousands of lives.  I have vowed to never be an eating disorder death statistic: please help ensure that same  promise, for the thousands of others who are suffering!

I look forward to hearing from you soon.

Graciously yours,   Rebekkah Beth Bodoff


picture courtesy of: photobucket.com/

Mental Illnesses a "Civil Rights Issue!"

The EDC attended a luncheon at the National Press Club in Washington DC today with mental health parity champions former Congressmen Patrick Kennedy and Jim Ramstad.  Even after leaving Congress both Ramstad and Kennedy remain passionate about ensuring the implementation of a strong Final Rule for the 2008 Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (MHPAEA) in a way that eliminates discrimination against those with mental illnesses.

EDC Policy Director & Former Congressman Jim Ramstad

The EDC was able to ask a question of the Congressmen regarding insurance tactics used to discriminate against those suffering with eating disorders. Here is a link to the video of the question and responses:
http://www.c-spanvideo.org/program/InsuranceCov
(the entire video is interesting and worth watching, but the question re: Eating Disorders is addressed beginning at: 47.58)

The two are launching Parity Field Hearings in many cities throughout the country to draw attention to the continued exclusions and inappropriate insurance denials. The EDC spoke with Kennedy directly and we will be bringing people with eating disorders who have been denied treatment to testify at these hearings.