Tuesday, September 2, 2014

Our Voices and Stories Matter: What Lobby Day Means to Me

by Carmen Cool

The thread that runs through all of the work I’ve done in my life is “advocate”.  It’s who I am and it’s what I do.

I have been to many Lobby Days with the Eating Disorders Coalition (EDC).  When I am there, I bring several distinct perspectives:  I am a recovered person, a psychotherapist who works with eating disorders, a woman whose sister has died from an eating disorder, and an educator who trains young people to do eating disorder prevention work in their schools.

As a feminist therapist, I believe that work has to be done at both the individual and collective level – because eating disorders are not not just a personal problem. In addition to individual work,  I want – no, I need – to do work at the social and policy level so that there are systems in place to support those people I work with.  I still get nervous when I “speak truth to power.”  I still have that voice that whispers (or screams, depending on the day) “who do you think you are?” 

What I learned that very first time was that our Representatives and Senators want to hear from us. They need us, actually. There’s no way that they can know about all the concerns and issues that are out there unless we tell them. Our stories and our voices matter.

It is important to me to use my voice to advocate for my clients. For myself. To support youth in raising their voices and changing the norms that value one body type over another. When I go to DC to lobby, I get the opportunity to take a stand and do all of that.
Carmen (front row, center) with her teen
Body Revolution Advocates

I’ve taken a group of teenagers every time I’ve gone to lobby. This has touched me in so many ways. I love to watch them sit a little taller as they realize they have something to say. I love to listen to their voices shake as they sit in a Senator’s office and then even out as they find their center. And I love to witness their resolve to keep being involved and work for something they believe in.

On top of all that, we get to explore DC! That means Georgetown cupcakes, visits to Monuments and Memorials, late night sharing circles, going the wrong way on the Metro, and jars of hazelnut praline spread from Le Pain Quotidien. But also blisters, giggles when the elevator doors open to reveal cute staffers- all part of what makes our trips fun!  Hearing them say “I have never felt so powerful in my whole life,” after lobbying - that is what keeps me coming back.

To use your voice, be listened to and taken seriously, and the lived experience of knowing that your voice can impact change – that is worth gold. Please join us September 30 and October 1 for the M.O.M. March and the 26th EDC Lobby Day! For more information and registration, visit www.marchagainsted.com.

Friday, August 29, 2014

Who My Daughters Will Become: Reflections on Lobby Day, Advocacy, and Motherhood

Liz and her daughter Genevieve 
by Liz Neaton

Though I had spent several years working in politics in Washington, D.C., the first day I walked into the office of Representative Keith Ellison (D-Minn) for The Eating Disorder Coalition’s (EDC) Lobby Day, I felt like I truly had the ability to make a difference.

I started participating in Lobby Day in 2009. At that time, I never knew just how much it would change me. That year, I heard compelling stories of both recovery and loss with eating disorders.

Loss… that resonated with me.

I had never met anyone who had lost someone to an eating disorder. Here I was, just starting out in my own journey of recovery from the monsters of Anorexia Nervosa and Bulimia Nervosa that had plagued me for the past fourteen years. This was exactly what I needed to hear and it was exactly the moment I needed to hear it.

That first Lobby Day renewed my dedication to recovery. I didn’t want to be another name that was lost to an eating disorder. I didn’t want my parents standing at the podium during a congressional briefing telling my story with tear-filled eyes.

After that year, Lobby Day was like a magnet that sucked me in. Each time, I heard compelling stories of individual trials and tribulations with one common theme: eating disorders lack proper funding, education and access to treatment. A fire was lit underneath me at Lobby Day. I started speaking about my own journey to recovery at high schools, colleges and civic groups. I started contacting my legislative officials on at the local, state and federal level to inform them of the lack of proper funding, education and treatment of eating disorders.

Then, in 2011, I had a daughter of my own – Genevieve. As a single mother, I knew that I needed a safety net if anything should ever happen to me. So, I attempted to get life insurance. I was denied seven times. I’ve kept every denial letter and they all say the same thing: “denial based on history of depression, anxiety and an eating disorder.” Even though I was in a strong recovery program, my past eating disorder was following me. Now it was not just affecting me; it was affecting my daughter. When my daughter was six months old, I brought her with me to Lobby Day. I thought that I should start her advocacy career young. To this day l believe she is the youngest to advocate for the Federal Response to Eliminate Eating Disorders (FREED) Act and eating disorder legislation with the EDC.

Since 2011, I’ve had another daughter. That’s why this upcoming Lobby Day and the March Against Eating Disorders are both so important. 

When I look at my daughters, I see their beauty and potential.
I think about who they will become.
I encourage them and remind them that they can do anything.

Most importantly, I tell them they are beautiful every day. I write it on the mirror so it is the first thing they see in the morning. The last thing I want is for my daughters to endure the struggle I had endured for fourteen years. I want them to love their bodies and realize how perfectly created they are. I don’t have a crystal ball and I can’t say for sure that one of my daughters won’t develop an eating disorder. I can’t say for sure they will love their bodies. In fact, the statistics are against me. But I can show them through my tireless advocacy and, most importantly, by my example that their beauty and worth does not come from anything outside of themselves. Their beauty is from the simple fact that they are alive. They are present and they are able to live their lives. I will continue to come to Lobby Days until we never have to hear the words “eating disorder.” Until no more lives are lost to this terrible disease. Until proper treatment, funding and education are implemented.

I hope you’ll join me in September!
The EDC's youngest advocate joins EDC staff
in the House of Representatives.

Thursday, August 21, 2014

A Mom Shares About Lobby Day

August 18, 2014
"Lobby Mommy!!"
By Faith Yesner

It was April of 2009, seven months after my daughter was diagnosed with anorexia, when I first stepped out of my life of "politically ignorant bliss" and onto Capitol Hill as a lobbyist for the Eating Disorders Coalition (EDC). Before that day, I didn't know what a lobbyist actually did!!  In fact, until I actually lobbied...until I took my first step into the office of my Representative (heart pounding, hands shaking), I never imagined how empowering and satisfying lobbying would be! Of course, before that day, I had no reason to get “all political" or even marginally involved in what I just didn't "get." I was your middle class mom of 2 easy going kids, one in college and one in HS, focused on college apps and auditioning for my finally flourishing acting career!

Life came to a screeching halt with the anorexia diagnosis, and devastation ensued for our family. I was barely functional from shock, fear and depression. I was full of rage at what this disease was doing to my family and more so, to my beautiful daughter. In addition to that, I had to battle insurance for coverage even when it was medically necessary and urgent, and advocate constantly to keep my daughter from falling through many treatment cracks. As I educated myself about eating disorders, treatment protocols, lack of fair and necessary insurance coverage, and lack of educational programs and info about this deadly disease, it was evident that the system was terribly flawed.   It was also evident that many battling eating disorders were, in fact, falling through the cracks and suffering terrible consequences.

Now I had a reason to become "all political"!!

When the opportunity arose for me to use my tired, angry, frustrated, heartbroken voice in a concrete way that could promote change, I jumped...onto a train from Philadelphia to the Hill (Capitol Hill), alone and nervous, to my first EDC Lobby day!!! Even as an actress with no fear of public speaking, I was scared!! This was the unknown, but considering what I had to face when the once unknown anorexia reared its ugly head, this was a piece of cake.

We had a training session the morning of lobby day and rehearsed what we were going to say to our Members of Congress and their staff. A team leader organized it all and anchored the team, so we never felt alone. Once we hit the Hill and headed towards our arranged meetings, the excitement grew! As we met our Representatives and Senators, I began to see just how powerful a Mom's voice can be. When a mom speaks, they listen...intently. Because they are human too. Because most have suffered some heartache, or have children of their own and "there but for the Grace of God go they." When you bring humanity, and a passionate mom, into the world of "
politics as usual," something happens. We catch the attention of those that hold the political power and that is the start of change!

Moms have been the catalysts for change in many political arenas. Don't mess with a mama lioness!!! She is relentless! She is a lobby mommy, and she will roar!!

I hope to see you at the MOM march and lobby day this coming Sept/Oct!!!

Congratulations Kantor & Kantor!!

August 21, 2014
Washington, DC
by Kathleen MacDonald, Policy & Communications Director, Eating Disorders Coalition

The +Eating Disorders Coalition offers huge congratulations to +Kantor & Kantor, LLP for their most recent success in fighting back against an insurance company's wrongful denial of benefits for an eating disordered patient, Ms. Jones*.

On January 7, 2014, Kantor & Kantor attorneys Elizabeth Green, Lisa Kantor and Peter Sessions appealed to the United States Court of Appeals for the Ninth Circuit Court on behalf of Pacific Shores Hospital ("PSH").  On August 20, 2014, Judge William A. Fletcher issued his opinion that reversed the original district court's judgment, a baffling judgment that sided with United Behavioral Health; Wells Fargo & Company Health Plan ("UBH").  For Jones' treatment, Judge Fletcher opined, "We conclude that UBH abused its discretion in refusing to pay for the these days of treatment."

Judge Fletcher went on to boldly call out UBH's Drs. Barnard, Center and Zucker for their several wrongdoings in and mishandling of the patient's (Ms. Jones) benefits for treatment, stating, "Fiduciaries must discharge their duties "with the care, skill, prudence, and diligence under the circumstances then prevailing that a prudent man acting in a like capacity and familiar with such matter would use in the conduct of an enterprise of a like character and with like aims."  "UBH fell far short of fulfilling its fiduciary duty to Jones. Dr. Zucker, UBH's primary decisionmaker, made a number of critical factual errors.  Dr. Center, as an ostensibly independent evaluator, made additional critical factual errors.  Dr. Barnard, UBH's final decisionmaker, stated that he arrived at his decision to deny benefits "after fully investigating the substance of the appeal."  He then rubber-stamped Dr. Center's conclusions.  There was a striking lack of care by Drs. Zucker Center and Barnard."

I had the privilege and honor of watching Elizabeth Green argue this case at the district court level. Elizabeth's thorough knowledge of the case, and of the patient's suffering and the complexity of her illnesses, is a standard that every insurance company and insurance company decisionmaker would be wise to measure themselves against, and emulate.

The persistence of Kantor & Kantor and the wisdom of the Ninth Circuit Court proves once again that insurance companies cannot continue to wrongfully deny benefits and expect to get away with it, sans consequence.  And I also believe that this opinion proves that good always trumps evil --even if it takes a little bit of time for good to prevail.

The entire opinion** can be read here: http://cdn.ca9.uscourts.gov/datastore/opinions/2014/08/20/12-55210.pdf 

*The patient's name has been changed to protect her privacy
**I urge caution that if you are someone who is "triggered' by behaviors and numbers such as weight or BMI, you might not want to read the opinion as Ms. Jones' case is described in detail.

Tuesday, August 19, 2014

Why I Lobby (and Why You Should Too!)

Richmond, Virginia
By: Matt Wetsel

One of the Bills that the Eating Disorders Coalition (EDC) supports is the Federal Response to the Elimination of Eating Disorders, or the FREED Act. Sometimes people see that word ‘eliminate’ and ask us – do you really think that’s possible?  Well, here are the facts: We know recovery is possible. We know many of the warning signs for the onset of eating disorders. We have effective treatment models. So, those make you wonder…

Why, then, are eating disorders on the rise?
Why are people dying from them?
Why is it so hard to get help for an eating disorder?

Unfortunately, it’s complicated. Long before someone seeks help, there are a lot of barriers already in place. These often include:

1) Stigma. Although eating disorders are talked about by the general public more now than even just ten years ago, the average person still lacks significant understanding of the complicated nature of eating disorders, and the seriousness of the diseases.  The lack of understanding remains, in part, because eating disorder sufferers often try to keep their disease secret – those suffering from eating disorders go to many lengths to try and hide or cover up their behavior and try to appear ‘normal.’  It also doesn’t help that, many still view eating disorders as an “illogical problem.”  Despite increased discussion and awareness, it is still difficult for people who haven’t ever been close to someone with an eating disorder to understand how such a disorder develops and takes root, because many people still wonder, “Why would you choose to starve yourself? Why would you chose to throw up your food? Why don’t you just stop binging?”  To many, eating disorders don’t make logical sense.  These uninformed ideas and opinions about a disease that is anything but a choice, are reinforced by…

2) The Media/Pop Culture.  Just this past Thursday, going through the check-out lane I was greeted by a celebrity gossip magazine cover devoted to eating disorders (EDs). The cover consisted of a collage of emaciated models and actresses, along with a list of other celebrities covered in the issue, their various EDs, and the promise of lowest weights and caloric intake in the articles contained within. Anyone see the problems here?  The main problem is the myths purported.  First, they were only covering women.  Second, to have an eating disorder, you do not have to look emaciated.  Binge-eaters and compulsive overeaters typically aren’t underweight, and bulimics often seem to maintain (emphasis on “seem to”) what appears to be a healthy weight due to the way the body responds to purging activities. The magazine’s glamorization of emaciated celebrities misrepresented the breadth and variation of those who suffer eating disorders.  If the extreme portrayals exhibited in the magazine stories are all the general public ever sees or hears on eating disorders, then that makes early detection and prevention harder.  For people in a position to support someone with an ED, this media misrepresentation instills a bias before they even approach the subject, and makes it harder for people to take seriously. Speaking of taking it seriously…

3) Treatment Coverage. A recent Glamour article highlighted the fact that most doctor’s do not know how to diagnose eating disorders, including if the patient is underweight, whether slightly or grossly, or exhibiting signs and symptoms of bulimia or binge eating disorder.  Part of the reason why doctors don’t identify eating disorders in their patients is because they are undertrained in medical school, and they rely on pop culture to judge whether or not a patient has an eating disorder.  All too often patients have heard things like:

-“Well, you’re not that underweight, so you’re not anorexic.”
-“Just don’t let your diet get out of control.”
-“Hey –at least you’re not overweight!”

Unfortunately, appearances can be deceiving, and not even doctors are immune to the thin-is-healthy bias. This is further compounded by the lack of research done on eating disorders. To date, there have been no comprehensive, nationally representative studies on eating disorder prevalence. There is endless debate about the ‘cause’ of eating disorders, and almost as much debate about the best way to treat them.

Looking at what we’re up against, it’s pretty easy to feel discouraged. The good news is, there are already members of Congress, the individual advocates and the Member Organizations of the EDC and other organizations working to address these problems.

For starters, the EDC has partnered with Mothers Against Eating Disorders and The Alliance for Eating Disorder Awareness to put on the biggest event in EDC National Lobby Day (Lobby Day) history yet! On September 30, 2014 the Mothers and Other’s March (M.O.M.) Against ED will take place in Washington, DC. The day will conclude with the world premiere of America the Beautiful 3 (ATB3) and the filmmaker himself, Darryl Roberts.  The ATB film series has shed light on the many ways that the beauty industry contributes to the unhealthy relationships that so many people suffer with their body, and we’re thrilled to have him join us!

October 1, 2014 will see the EDC’s 26th Lobby Day on Capitol Hill. We’re excited to continue advocating and gathering support for the FREED Act.  And, we’ll also be introducing new legislative initiatives around the Body Mass Index (BMI). 

So how can you get involved? For starters, join us for Lobby Day and the M.O.M March! Full details and registration can be found here:

Showing up in numbers on Capitol Hill, sharing our voices and collective message with Members of Congress and their really amazing staffers is ultimately the best way for us to advocate together and make change, but… If you can’t make it to DC for Lobby Day and the M.O.M. March but you still want to be a part of history, stay tuned to the EDC’s FB, Twitter and blog for how you can make a difference even if you’re not on the Hill with us that day. 

Whether in DC or supporting from a distance, we hope you’re as excited as we are about the upcoming events and Lobby Day efforts. It’s a chance to make a difference for millions of people and continue to advance a cause we all care so much about. That’s why I’ve been involved for the past seven years, and why I keep coming back. So please, join us however you’re able. See you soon!

Monday, August 4, 2014

A Dad Shares About Lobby Day

August 4, 2014
Washington, DC

Artie Fox is a Board Member of +Alliance For Eating Disorder, an +Eating Disorders Coalition advocate and perhaps most importantly, he's a dad.       Artie graciously agreed to share his thoughts about Lobby Day in this guest blog.  Thank you, Artie --your advocacy means the world to us.

A Dad Shares About Lobby Day:

My daughter has struggled with an Eating Disorder for nine years. After going through the misery of suffering and meeting other families going through the same agony, I wanted to make a difference.
I joined the Board of The Alliance for Eating Disorders in Florida, in January, 2013. At one of my first meetings, I was informed about Lobby Day in Washington, D.C.

I attended my first Lobby Day in April 2013 and found it to be an incredible experience. We, as a group, do make a difference. We meet with various congressional  leaders, discussing many issues which include the FREED Act, as well as photo shopping and how it effects families and individuals with Eating Disorders.  A big part of Lobby day is the opportunity to meet with and socialize with others from around the country. Sharing each others experiences and ideas makes Lobby day extra special for me.

My hope is that every state is represented at EDC National Lobby Day and we do effect changes with the way Eating Disorders are perceived and treated, and eliminate the stigma attached to them.

Friday, July 25, 2014

Highlights From A Powerful Congressional Briefing

Nearly every seat in room "SVC 201-00" was filled yesterday with staffers from Capitol Hill who came to hear testimony about eating disorders at our Congressional briefing entitled, "Photo-shopping, Weight Stigma and Eating Disorders: What They Have in Common and Why They Matter."  The briefing was hosted by long-time friend of the EDC, Senator Tom Harkin (D-IA).

(L-R: Kathleen MacDonald, Rosie Buccellato, Allyson Kapin, Dr. Rachel Adatto, Lizabeth Wesley-Casella)

Allyson Kapin, Founder of Women Who Tech and the +Rad Campaign, offered her compelling presentation on photo-shopping, including a live demonstration during which she showed the audience how, with just a few clicks on a computer, a person can be completely and radically transformed.  You could hear audible comments like, "oh my gosh" and "no way" coming from audience members as Allyson gave one model 'six pack abs' with just one mouse-click. 

+Lizabeth Wesely-Casella, Founder of +BingeBehavior.com, focused her presentation on weight-stigma and weight-bias.  Not only did Lizabeth share her professional expertise on these two topics, but she weaved in Health At Every Size and also her personal experience with Binge Eating Disorder (BED).  Lizabeth's testimony offered a call to action for everyone in the audience to help eliminate weight stigma and weight bias.  And, she encouraged people to see the beauty of their body in its genetically natural shape and size versus suffering to live in a body defined by the beauty-standards of society.

Dr. Rachel Adatto, Former Member of the Israeli Parliament, presented on her country's success in passing legislation addressing photo-shopped pictures and the BMI of fashion models.  Her successful efforts enlightened the audience that the 'solution' to eating disorders needs to be multifaceted --from educating doctors and society to passing legislation.

+Rosie Buccellato shared her personal story and it was clear from the tears seen and the sniffles heard that Rosie's poignant testimony touched people deeply.  Rosie's eating disorder emerged when she was seven years old after she was fat-caliper and BMI tested in front of her 2nd grade class.  Though Rosie shared of the devastation she and her family suffered during the14 years the disease held a tight-grip on her mind, body and spirit, she also shared the success of her healing, "I am not yet completely recovered.  But for the first time in 14 years of suffering, I have one full solid year of recovery under my belt."

We concluded with "Q & A."  Audience members asked several important questions, including personal ones -indicating that they truly 'get it,' intellectually and emotionally, when it comes to the seriousness of eating disorders. 

The +Eating Disorders Coalition offers sincere gratitude to each of the speakers for their expertise, for the time and energy they put into preparing their speeches, for expenses they incurred, for time they took off of work and for the emotional energy they put into making the briefing a huge success.  We are humbled by your commitment to advocacy.

So what's next?

Yesterday's briefing served as a catalyst for further discussion. In the coming weeks I will be following-up with each of the attendees, to dialogue about how we can work together to address the epidemic of eating disorders plaguing the lives of too, too many. 
Be sure to stay tuned for updates and ways that YOU can advocate with us. 

Yours from the Hill, ~Kathleen MacDonald, Policy & Communications Director

ps: Speeches, pictures and video will be posted shortly.

pps: You can already for this fall's EDC National Lobby Day which is in conjunction with the 1st ever M.O.M March on Capitol Hill! For all the details and to register, please visit: http://www.marchagainsted.com/2.html