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Archive for Advocacy

History Has Been Made

Guest Blog Post by Kitty Westin

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I was thrown onto an uncharted path nearly 17 years ago. I was in excruciating pain, I was lost and confused and had no idea how to navigate the path, where the journey was headed or what I was supposed to do along the way. When Anna died from an eating disorder on February 17, 2000 I felt like my world had blown apart. I did not know how to survive the tragedy but I did know one thing; I had to somehow transform the horror of Anna’s death into something positive. I reached out to Senator Paul Wellstone who was a champion of mental health parity and asked for his help. I told him Anna’s story and he told me to take the story to Washington D.C. He said that I should bring as many other voices with me as possible because that is what would make change happen. My journey has been hard, frustrating, messy, and often filled with obstacles, but it was always a journey of love.

Once I figured out that the journey was headed towards Washington D.C. it did not take long for others to join me on the path. People from across the United States stepped up and were willing to use their voices and tell their stories to Members of Congress. Soon we had a movement that included thousands of people who were committed to a common goal, which was to pass meaningful Federal legislation to address eating disorders.

In 2014 we introduced the Anna Westin Act and our advocates began the hard work of meeting with their representatives, making phone calls and sending letters, emails, tweets and posting on Facebook to drum up support. As the 114th Congress was nearing the end we heard that our efforts were successful and language from the Anna Westin Act was included in a bill called the 21st Century Cures Act. The Cures Act is a bipartisan bill and both the House and the Senate were motivated to get it passed before Congress adjourned in December. The House of Representatives passed the Cures Act with Anna Westin Act language included on Nov. 29 with an overwhelming majority, 392- 26. The bill was brought to the floor of the Senate on Dec. 7 and I along with fellow advocates watched as the Senators filed in one-by-one and voted. The bill won with an overwhelming majority of 94 – 5. On Tuesday, Dec. 13, President Obama will sign the bill and it will become law! After nearly 17 years of work we passed eating disorders specific legislation. We made history and the efforts of our advocates will help millions of people by providing training for medical professionals and clarifying that mental health parity applies to all levels of treatment including residential.

It is hard to describe how it felt to be sitting in the gallery of the Senate to witness this historic moment. I was elated and relieved. I felt immensely grateful to our grassroots advocates and our champions in the Senate and the House who worked tirelessly to get this done. And, I felt calm, like a weight was being lifted from my shoulders. I willingly took on the burden of getting this done and I was never alone on the journey. There were always people who helped carry the load but I always felt that it was my responsibility to be Anna’s voice and to get this initiative to the finish line. However, I and my fellow advocates could only take it so far, we had to have Members of the Senate and the House take it across the finish line. Senator Amy Klobuchar stepped up and assured us that she would do everything in her power to pass the Anna Westin Act and that is exactly what she did. She asked three women Senators to help; Senator Tammy Baldwin (D-WI), Senator Kelly Ayotte (R-NH), and Senator Shelly Capito (R-WV) and they worked as a team to get this done. I am proud of our Minnesota Congressional Delegation who joined forces nearly unanimously including Sen. Al Franken [D-MN], Rep. Erik Paulsen [R-MN-3], Rep. Keith Ellison [D-MN-5], Rep. Collin Peterson [D-MN-7], Rep. Tom Emmer [R-MN-6], Rep. Richard Nolan [D-MN-8], Rep. Timothy Walz [D- MN-1] and Rep. Betty McCollum [D-MN-4] to help millions of people who are affected by eating disorders.

Passing language from the Anna Westin Act was truly a team effort. It proves that having passion and commitment and never, ever giving up can lead to success. Our work is not done, there are other issues that we need to address related to eating disorders but let’s all take a moment to bask in this victory! Anna wrote the following words in her journal just days before she died; “May your dreaming never end and your voice never die”. Thank you for daring to dream and using your voice. Together we made history!

 

 

 

Eating Disorders Coalition Roundtable at the White House

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by Kitty Westin, eating disorder activist

It felt like I was in a dream this week when I was standing in line for security clearance to get into the White House for a meeting with top level White House staff, key government agencies, and eating disorders leaders from across the United States. I wondered if I would wake up and realize that I was having a really good dream. I didn’t wake up, it was real! It was a dream come true!

When I started advocating for attention to eating disorders at the national public policy level 16 years ago I often dreamed that someday our national leaders would pay attention and address the many issues that people affected by eating disorders face. I dreamed of a time when health care professionals, school personnel, and the general public would understand that eating disorders are serious, and sometimes, life threatening illness. I dreamed of the day when insurance companies would routinely APPROVE treatment for eating disorders at all levels of care. On Wednesday, September 14, 2016 I felt like I was living my dream!

The Eating Disorders Coalition for Research, Policy & Action (EDC), our Washington DC based advocacy organization, was invited by White House staff to convene a roundtable discussion on eating disorders. For the first time in history, eating disorders caught the attention of the Executive Branch of the United States government. It was an amazing day!

The EDC pulled together nationally known leaders in the areas of training, treatment and research of eating disorders. The White House invited representatives from several agencies including; Center for Consumer Information and Insurance Oversight, Office of Women’s Health, Department of Health and Human Services, SAMHSA, and NIMH. We discussed issues around mental health parity, early identification for school personnel and health professionals, and research needs as it relates to eating disorders. The end result included key follow-ups from the eating disorders community around all three areas. Overall, the conversations were very productive in all three areas, especially around the parity discussion. The White House and the agencies were extremely engaged and communicated how much they would like to have follow-ups and continue these discussions.

We are making amazing progress thanks to our advocates, our leaders, and our champions on the Hill! My dream of a world where eating disorders are no longer ignored, are no longer misunderstood and people with eating disorders (and all mental health issues) are able to get the care they need is in sight.

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Take Action for Mental Health Reform

#PassS2680#MentalHealthReform (1)

 

by Kitty Westin, eating disorder activist

The last time I wrote to you was on July 7; I was hardly able to contain my excitement! It was the day after the United States House of Representatives voted overwhelmingly (422 to 2) in favor of mental health reform, which included provisions from the Anna Westin Act. At the time I told you I believed that after a 16-year marathon we were nearing the finish line. After 16 years of hard work and the commitment of thousands of grassroots advocates we were close to passing the first eating disorders specific legislation in the history of the US Congress. As I watched House Member after House Member vote “yes” I allowed myself to hope and to believe that this long journey was coming to an end.

Today, I am writing to give you an update and ask you to join me in a vitally important effort to push our bill past the finish line. The finish line is still in sight and I am still hopeful that we will reach it. However, if we hope to cross it before the 114th Congress adjourns at the end of the year we need to rally the troops and make one final epic effort.

The Eating Disorders Coalition is organizing a Virtual Action Day on August 30th. We are asking people from across the United States to contact their Senators. This is a national effort involving several prominent advocacy organization and thousands of individuals. We are collaborating with APA, MHA, APA, NAMI, and Sandy Hook Promise to do a unified virtual action week…with the eating disorders community and Sandy Hook Promise’s day being August 30th. Let’s show the Senate how active, committed, involved and vocal the eating disorders community is! Every voice is important and every voice matters.

We need to put A LOT of pressure on the Senate to pass the Mental Health Reform Act of 2016 (S. 2680) this September. The Eating Disorders Coalition was able to get provisions from the Anna Westin Act into the Senate bill and when S. 2680 passes so does our language! There are other issues that the Senate will be considering when they reconvene in September and we need to make certain that mental health reform is a top priority.

Because this is an election year the Fall session will be very short, only a few weeks. With the uncertainty of the election season we must make our voices heard. We need you to encourage your networks, families, friends, neighbors…the mail man…everyone to participate!

The EDC makes it easy and quick to email or call your Senators.

We are targeting ALL Senators and we are putting extra effort to reach Senate Majority leadership and Senators in re-election campaigns. The following Senators are key: McConnell (Kentucky), Alexander (Tennessee), Ayotte (New Hampshire), Toomey (Pennsylvania), Kirk (Illinois), Johnson (Wisconsin), Burr (North Carolina), Rubio (Florida), Murkowski (Alaska), and Portman (Ohio). We’re also targeting Senator Minority leadership—Reid (Nevada), Schumer (New York), Franken (Minnesota), Klobuchar (Minnesota), Stabenow (Michigan), and Warren (Virginia).

Please help us cross the finish line. The time is now and with your help we can get this done. Mental health reform will help countless Americans who are struggling with mental health issues including millions of people who suffer from eating disorders. I promise that I will send photos from the Senate Chamber in September when the bill passes and standing next to President Obama as he signs it into law!

With deep gratitude,

Kitty

One Giant Leap

Guest Blog Post by Kitty Westin.

One giant leap for the eating disorders community.

-Jenna Tregarthen, Recovery Record.

I was glued to my TV Wednesday afternoon, watching C-SPAN, as the US House debated the Helping Families in Mental Health Crisis Act, HR2646. As members from both parties stood up and proclaimed their support for the bill I dared to hope that it might actually pass. I slowly allowed myself to believe that after a 16-year marathon we were getting close to the finish line, the first of several finish lines. When the votes started coming in I held my breath but soon dissolved into tears as the YES votes multiplied. When the votes were in, the total was 422 yes votes to 2 no votes. In this very partisan Congress this was amazing in itself. But, the more amazing news is that provisions from the Anna Westin Act were included in the bill! For the first time in the history of the United Sates Congress, eating disorder specific legislation passed the US House.  The bill includes key pieces of the Anna Westin Act including the following:

 

Information and Awareness on Eating Disorders, which allows for the update of public information, resources and prevention programs related to eating disorders to include current findings and research for the advancement of public awareness about the types of eating disorders, the prevalence and consequences of eating disorders, and ways to prevent eating disorders.

Education and Training on Eating Disorders to facilitate the identification of programs to educate and train health professionals and school personnel to identify eating disorders, intervene early and provide appropriate referral or treatment services.

Clarification of Existing Parity Rules, such that if a group health plan or insurance company provides coverage for eating disorder benefits, including residential treatment, the insurance issuer must provide the benefits consistent with insurance laws.

This was indeed a giant step and a victory for us but we are not done. Now it is on to the Senate. The Senate has a mental health reform bill that they will vote on in September. The good news is that Anna Westin Act language is included in the Senate mental health reform bill. Once the bill passes the Senate, both bills go to what is called “Conference Committee”. The Conference Committee includes people from the House and the Senate. They are charged with creating a combined bill that will go to the President for his signature.

We are close! Thank you to each and every one of you who has provided support in this journey.  I am hopeful that very soon a 16 year long journey will come to a successful end and we will have Federal legislation that addresses eating disorders.

For more information about The Anna Westin Act and HR2646 go to; www.eatingdisorderscoalition.org.

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.