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Eating Disorders Coalition Advocacy Day 2017

On April 5th, 2017 The Emily Program Foundation and scholarship recipients traveled to Washington D.C. for the Eating Disorders Coalition’s National Advocacy Day. Below are the reflections of our award recipients from their first experiences on The Hill.

Award Recipient Jamie Margetta:

This past week I was given the privilege to attend the Eating Disorders Coalition Day on the Hill. I was graciously awarded a scholarship from the Emily Program Foundation to fund my travels to Washington, D.C. to advocate alongside EDC members who are as passionate as I am about eating disorder advocacy. I expected to walk away with a new experience and a sense of accomplishment from advocating, but I ended up walking away with so much more. My experience at EDC’s Advocacy Day was eye opening, exciting, educating, and overall an experience I won’t soon forget. I was given the Jamie, Jillian and Molly opportunity to meet with House and Senate representatives and express my passion to eating disorder research, early intervention, and education. It was very empowering to be able to express not only my passion on this subject, but why others should care. Presenting fact sheets, personal stories, and evidence that eating disorders matter and they need help was very gratifying. I am so thankful the Emily Program Foundation gave me the opportunity to travel to Washington, D.C. and truly express my concerns and needs for the eating disorder community. I met the most amazing group of people and learned so much from the advocates. This is definitely an experience I will not forget, and I am so grateful I was able to advocate on behalf of friends, family, and loved ones who have experienced the challenges of an eating disorder. Your voice matters!

 

Award Recipient Molly Britt:

As a university undergrad, I did not believe that I could make a difference in the political world without any experience. My experience at the 2017 EDC Advocacy Day completely changed my view of that. While working alongside women and men of all ages, I got to meet with congressional staffers and spread the word about the importance of eating disorders and how the political Molly Britt and Emilyworld could help. It was the first Advocacy Day since the passing of the 21st Century Cures Act which was the first time in history that specific language regarding eating disorders was written into policy. Our mission was to prompt the members of congress to put this policy into action. I was overwhelmed by the support that so many of these staffers conveyed toward our cause and felt as though I was really making a difference. To top of the great day, I got to hear Amy Klobuchar – one of Minnesota’s senators and a driving force for eating disorder policy – speak and thank us for all our hard work. This day has motivated me to participate more in policy change surrounding eating disorders and all other mental health causes.

Lobby Day is about stepping out of the shame

By Billie Gray, PhD, Executive Director of The Emily Program Foundation

Twice a year, a group of people from around the country go to Capitol Hill in Washington, D.C. to meet with their elected officials to educate them on the prevalence of eating disorders, the impact on millions of Americans, and how policy change is needed to address this.  The Emily Program Foundation provides scholarships to help people travel to D.C. to tell their stories, to join their voices together in advocating for change.

I went along this time to tell my story.  My story is about the need for more education among our medical professionals.  My doctor (who is a fabulous doctor, well-read, current on research) watched me nearly double my body weight over the course of a few years and never once suggested there might be anything going on besides a weight problem.  He missed my eating disorder for 15 years.  It slowly dawned on me how very twisted my thoughts were around food and my body, but I had to come to that realization on my own and so I walked myself into an eating disorder clinic to ask for an assessment.  I was 39 years old before that happened, and I have wondered repeatedly over the past six years how my life might have been different if I had been diagnosed at age 24 when I started to go off the rails.

I got home from DC yesterday and went to my eating disorder group last night.  I was telling them about my trip and what an empowering experience it was to tell my story.  I talked about how one of the hallmarks of our disease is that we feel wrong.  Our bodies are wrong, our very being is wrong, to the point where we will starve ourselves or eat ourselves to death to try to make those feelings of wrongness go away.  The problem is, we can’t selectively dull feelings, and so we end up numbing ourselves to the good that life has to offer as well.

It turns out that despite the best numbing efforts our eating disorders provide, those feelings of wrongness are pervasive, and we walk through life believing that we are just wrong, that we are a mistake.  And even when we get treatment, we are still wrong; there is something wrong with us that our wonderful, caring treatment providers are trying to fix.  And these everyday heroes help us realize that, while there are things wrong with us, they aren’t necessarily the things we thought were wrong.  And they help us learn to feel again, both good and bad, but hopefully not wrong.

Ohio Team

They and we work really hard on this, but years of feeling wrong can leave a residue that is hard to wipe away.  But then, you come to Capitol Hill and you meet others from around the country—strong, intelligent, funny, interesting, creative, kind, snarky, successful, struggling, triumphant, AMAZING people who have eating disorders—and you start to think that maybe, just maybe, you’re not wrong in every way after all.  You start to think that maybe you can take your place among them, with your head held high.  You start to realize, as strange it sounds, that perhaps you like people with eating disorders just a little bit more, find them more interesting and just a little cooler, than the average Joe.  And what might that mean about you?  Could you be OK the way you are, too?

And you get your first inkling, the first tiny fluttering in the back of your mind, that maybe you wouldn’t change things if you could.  Now, you’re not there yet.  Things are still too hard, and the pain of your eating disorder too fresh, but you can actually envision yourself getting to the point where you like yourself, and your life, enough that you don’t think you’d change the past if you could, because it’s what made you who you are today.  But that doesn’t mean you wouldn’t change the future for those who come after you, and that’s why you’re here today.

And when you meet the congresspeople, and you talk about the many things that are wrong in our society that contribute to this problem—the under-educated medical professionals and school personnel who miss the early signs; the doctors who tell a mom her son can’t have an eating disorder because he’s a boy; the coaches who call healthy athletes “fat and slow” and put them on diets; the advertisers who feed us a constant diet of digitally-altered images, so that models don’t even look like models anymore; the insurance companies who say things like “we’ll pay for the sick, skinny ones, but not the fatties” or that use physical health criteria to decide what level of MENTAL health care a person needs—then you start to realize that maybe it’s not just YOU who are wrong, like you thought for so many years, but perhaps there’s a lot that is wrong OUTSIDE of you, with our system and our society.

I was telling all of this to my group last night, and I got choked up about it.  One of my fellow group members said, “But didn’t you go on this trip last year?”  And I said, yes, and it was good, but not like this.  And she said, “What’s different?”  I said something about last year being about trying to find my way around and logistics and I had a blister from wearing the wrong shoes.  The group therapist just looked at me with a soft smile and said, “And this year, you have a thing called feelings.”

It’s taken me a lot of years of treatment and a recent breakthrough to have a thing called feelings.  I’m just grateful that I got to not only attend the Eating Disorder Coalition’s Lobby Day, but that I was able to actually experience it, and that we can help others have similar experiences.  Lobby Day is about coming together to end the isolation, stepping out of the shame and into the light, and telling our stories to compel others to help right the wrongs, the wrongs that are not us, but are outside of us.

 

Billie Gray, PhD – Executive Director

Billie Gray is the Executive Director of The Emily Program Foundation. She first became involved with the Foundation as a volunteer and chair of the Foundation’s Program Development Committee.  She is committed to promoting healthy relationships with food and positive body image, helping people receive the right level of treatment sooner, and addressing risk factors that lead to eating disorder development.

Part 2: May your voice never die, by Kitty Westin

Republished with permission from emilyprogram.com

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Before I go into detail about the Anna Westin Act, I thought it would be interesting for readers to learn how the “dream” of eating disorder legislation became a reality.

Legislation was made possible through The Eating Disorders Coalition (EDC), an organization based in Washington D.C. that is on a mission to advance the recognition of eating disorders as a public health priority throughout the United States.  The EDC was formed 16 years ago by a group of six organizations as a way to bring eating disorder issues to the attention of policy makers in our nation’s capitol.  I am an original member, past president and current board member of the EDC. We are now a group with nearly 50 member organizations and hundreds of individual members. In addition to utilizing grassroots advocates to help us accomplish our goals, the EDC employs a policy team that has over 25 years of experience working on mental health issues on Capitol Hill.  We understand the good, the bad and the ugly of politics.

Developing, introducing and finally passing Federal legislation is complex, time-consuming and can be frustrating. One fun way to introduce you to D.C. politics is to invite you to review a short film that you probably watched in middle school. Do you remember, “I’m Just a Bill”?  Check it out on YouTube for a blast from the past!!

Before new legislation is introduced, there are countless planning meetings and hours of work that take place behind the scenes.  Hours of discussions and hundreds of revisions take place before a proposed bill is ready to be “shopped around” in Congressional offices. Finding sponsors who will support a proposed bill is necessary and can be difficult.  Once a potential lead sponsor is identified, a new round of meetings takes place before a bill is given the go-ahead to be introduced in the House or the Senate. This process is arduous and can take many months or even years.  It requires patience, building relationships, negotiations and accepting compromise.

The EDC had a comprehensive bill called the Federal Response to Eliminate Eating Disorders Act (FREED) that was introduced in 2009 before we started working on the Anna Westin Act.  FREED was the first comprehensive bill specific to eating disorders in US history.  The EDC held two national policy conferences that brought together patients, families, providers, researchers, education/prevention experts, and advocates to create the first draft of the bill. At that time, both houses of Congress favored passing sweeping legislation that addressed mental health issues.  However, the political climate changed in Washington D.C. In order to get a bill introduced that had any chance of passing, we also had to change.

The EDC had to step away and consider its next move. The result was the decision to “recreate” FREED into a new eating disorders-specific bill: the Anna Westin Act. The decisions related to what to include in the Anna Westin Act were not taken lightly and they were not made in a vacuum; we worked hard, did our homework, and sent our policy team into both Democratic and Republican offices to get ideas and feedback. In addition, we polled EDC member organizations, individual advocates, and invited the public to contact the EDC with suggestions. We took all ideas seriously. The components of the bill were carefully thought out to make it appealing to both Democrats and Republicans and many of our friends in the House and Senate have confirmed that they will support the Anna Westin Act by signing on as sponsors and co-sponsors.

On May 21, 2015 the Anna Westin Act (HR 2515) was introduced in the US House of Representatives with bipartisan support from Rep. Ted Duetch (D-FL-21) and Ileana Ros-Lehtinen [R-FL-27]. And, on July 28, 2015 The Anna Westin Act (S 1865) was introduced in the Senate by Democratic Senators Klobuchar and Baldwin and Republican Senators Ayotte and Capito. The Anna Westin Act is the culmination of thousands of hours of work by hundreds of people over many years and it will address some of the most problematic issues facing people who are affected by eating disorders. It will improve early detection and care for eating disorders by providing training for physicians, health professionals, school personnel, and the public.  It will clarify the Paul Wellstone and Pete Domenici Mental Health and Addiction Equity Act of 2008 to ensure that all levels of treatment are covered by insurance. In the House, it will require that the Federal Trade Commission studies and reports on whether regulation is needed for digitally altered images of people in advertising, and if so, mandate strategies to achieve regulation.

I am very happy to report that the Anna Westin Act has achieved significant progress. We now have 72 cosponsors in the US House of Representatives and 12 United States Senators cosponsoring the bill. We are working to bring more members in the House and Senate on board and we are also working with Congress to get language from the bill included in broad mental health reform bills that are currently being considered by the House and the Senate. March 16, 2016 was a historic day for the eating disorders community when provisions from the Anna Westin Act passed with unanimous, bipartisan support in the US Senate Health, Education, Labor, and Pensions (HELP) Committee. This was a huge victory and we are excited to keep this momentum going by continuing our efforts during Eating Disorders Coalition Lobby Day on April 18, 2016.

One of the reasons the EDC has been successful in bringing our message to policy makers is through our advocacy training and Lobby Days in Washington D.C. and virtual Lobby Days in your home state.  The people who come to D.C. for Lobby Day receive training on how to be an effective grassroots lobbyist and then, as part of a team, speak with Members of Congress at meetings which the EDC has set up. Our advocates share the impact that an eating disorder has had on them personally, as well as talk about the Anna Westin Act and how it will help those impacted by eating disorders. The EDC website has short videos designed to help you understand grassroots lobbying and what to expect at EDC Lobby Day. Everyone is invited and encouraged to attend EDC Lobby Day. Please go to: www.eatingdisorderscoalition.org for information on how to register for our upcoming Lobby Day.

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The Anna Westin Act does not make me giddy with excitement. In fact, it makes me incredibly sad because it comes too late to help Anna. But it does give me hope that necessary change can happen and it won’t take another 16 years of suffering for this change to happen.  The Anna Westin Act is not about Anna or our family, it is about the millions of people who struggle with eating disorders. It is about creating a world where eating disorders are understood, taken seriously, treated effectively and prevented whenever possible.

I sincerely hope that the entire eating disorder community; including people who struggle, family and friends, professionals, policy makers and the community in general will get behind the Anna Westin Act.  By working together we can continue to make progress in the fight against eating disorders. We know that by working together we can prevent more people from suffering and dying.  Your voice IS important and in Anna’s words: “may your dreaming never end and your voice never die.”

-Kitty Westin

Emilyprogramfoundation.org
Eatingdisorderscoalition.org
#TheTimeIsNowfor #AnnasLaw

Part 1: A mother’s journey from grief to action, by Kitty Westin

Republished with permission from emilyprogram.com

Kitty Westin Headshot for Jonathan Conklin PhotographyI never wanted to be an advocate. I did not train or study or seek out “master” advocates to mentor me.  I did not go to school or attend workshops or listen to webinars about becoming an advocate. I had no intention of starting a movement, being drafted into an army of eating disorder activists or becoming the thorn in the side of insurance companies. However, on February 17, 2000, the day my beloved daughter Anna Westin died of an eating disorder, I was launched into a life that I could not have imagined. The day Anna died of anorexia was the day that my life changed forever and the day I found my purpose.

Anna was a spirited, fully alive, amazingly talented young woman. She grew up in a family who cherished her and she had dreams and hopes of a future filled with romance, adventure and excitement. Of course, that was before she was stricken with a disease that affects over 30 million Americans, a disease that has the highest mortality rate of any mental illness. Anna was diagnosed with an eating disorder, anorexia, when she was 16 years old and that disease killed her three months after her 21st birthday.  Anna never had the chance to finish college, embark on a career or find a life partner.  She never had the opportunity to use her voice and fight for what she believed in but she left me instructions to be her voice. In one of her final journal entries she wrote these powerful words: “All that’s been done and said crowd through your mind; a challenge begins. May all your love, your joy and pain, all your fears and desires lead you to your own promises, may your dreaming never end and your voice never die.”

What happened to Anna? How does an intelligent, talented, spirited young woman go into a death spiral and find it impossible to come out alive?  I have spent the past 16 years trying to answer those questions. I have done this for selfish reasons. I wanted more than anything to bring Anna back but since that was impossible I decided that telling Anna’s story might save someone else from an early and unnecessary death.  Knowing that some other mother has been spared the horror of burying a child has helped me cope with Anna’s death and heal from the loss.

I have gradually, and often reluctantly, become an expert on eating disorders.  I confess that I knew almost nothing about eating disorders when Anna was first diagnosed.  In fact, there was very little information readily available and we found that support for the family was nearly non-existent. To add insult to injury we also discovered that many professionals had little training about eating disorders and insurance companies routinely denied authorization for treatment of these debilitating and deadly diseases. After Anna died I realized that by speaking honestly and openly about her life and death I might be able to bring about much needed change in the way eating disorders are understood and addressed.

Over the past 16 years I have been active in many eating disorder organizations. I have seen progress in some areas and I am thoroughly frustrated that we still have so far to go. Every 62 minutes someone in the United States dies as a direct result of an eating disorder. This is an appalling statistic that breaks my heart. But, there is good news. There is hope. More and better treatment for eating disorders is available, there is more support for family and friends of people who struggle with eating disorders, and there is finally attention to eating disorders at the federal policy level.  There is eating disorders specific Federal legislation, the Anna Westin Act of 2016, that was introduced in both the House and the Senate about a year ago and there is reason to be very optimistic that this legislation will pass!

Lobby Day was a “phenomenal blessing”

Submitted by Cait Rosellini

On Tuesday, May 12th I found myself standing, bags packed, on the curb of Sea-Tac Airport wondering what the hell I was doing. I consider myself a confident person; I understand what I want and know the most efficient way to secure it, and while I experience doubts I settle in knowing everything happens for a reason. But standing in the departure zone that morning I had a moment of panic.Cait2

What makes me qualified to travel to D.C. and advocate for the millions of people suffering?

What if I cannot articulate myself?

What if I just start sobbing?

But, armed with my EDC Lobby Day packet and what I didn’t know would be my last Starbucks until returning to Seattle, I silenced the negative thoughts and began my journey back east. It wasn’t very sure about how this would all work once I got to Lobby Day. I realized as I was walking into the initial meeting space that I didn’t know anyone, aside from Jillian who I had seen at The Emily Program’s Recovery Night in Spokane. I was a little lost at first but was quickly and warmly welcomed by a mirage of people who were quite stunned that I was from Washington STATE and not the Washington they always referred to.

During training we were tasked with learning about Anna’s Law and then writing about our own experience with eating disorders, whether that meant within ourselves or someone we knew. I was immediately thrown off by this, I have never been asked to share my story with a team of people I barely knew the names of. This hesitation, though, quickly vanished as I was met with care, compassion, and understanding by each individual on my team. The insight and solidarity that happened immediately gave me the ability to claim my story and present it with confidence and eloquence during our meetings.

Meeting with Senators, Congressmen and women, and staffers from each office was empowering. Having the time and space to champion a cause so close to each of us made for an exhilarating day. We ended up splitting the points between each of us and we tackled the problems of treatment, training, and truth in advertising with eloquence and empathy. And hey, we got bipartisan support, no big deal.

As we walked into our last meeting my team was joined by Kitty Westin. Having the chance to watch her expertly gauge the room and speak so articulately made me reflect personally on my journey. It made me think more deeply about what it must be like to be the parent of someone suffering from any of the numerous eating disorders presented, and how it must be so difficult to time and time again fight with insurance over the value of someone’s life. There are so many layers to this struggle, and so many facets through which people experience this insidious disease and it was quite simply an honor to have the opportunity to represent such a strong group of men and women.

Coming back to Seattle has been tough, mostly because I recently graduated from college and have moved home leaving my trustworthy TEP team in Spokane. Luckily, I have made incredibly supportive friends through different aspects of TEP and have been able to process my experience with them. It has been such an phenomenal blessing to represent this program in D.C. and I truly cannot wait to get back over to the hill to lobby again in a few short months.