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.