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Tag Archive for Eating Disorder Coalition

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.

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

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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.

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

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Eatingdisorderscoalition.org
#TheTimeIsNowfor #AnnasLaw