What Lobby Day Meant to Me

Eating Disorders have been a part of my life since I was born, I just didn’t know it yet. It seems unfathomable that something so pervasive in every day life is hardly talked about and rarely taken seriously. So many people have laughed at the words ‘eating disorders’: the media, my family, my friends, my teachers, my government… everyone. Those words weren’t funny anymore when my best friend lost about twenty pounds in two weeks. Those words hit me like a train when I walked in, her hand was down her throat, and blood was splattered along the porcelain toilet bowl. Something was wrong with this picture, how could such a beautiful girl, whom I’ve know my entire life, whom I have loved and cared for do something so terrible to herself? That’s when I decided it was time for me to make a difference and joining Boulder Youth Body Alliance (BYBA) was my key. With BYBA I feel empowered. I can make a difference in my community, but the D.C. Lobby Trip gave me a chance to change millions of lives, going straight through our government.

It didn’t hit me what we were really doing in D.C. until the initial training day. The people there have really been affected by eating disorders. Some of the people there have been denied treatment for fifteen years; others had been through successful treatment and had recovered, while others have lost loved ones. So what were we? A group of teenagers who were ‘out to change the world’. We were sure no one would take us seriously. When confessing my fears to one of the amazing people at that training day she said something like, “It doesn’t matter what you’ve been through, it only matters how passionate you are about the cause.” Those few words changed my life. I knew that what I said to Rep. Jared Polis mattered just as much as what anyone else had to say and that is the beauty of the lobby day. Instead of the idea that we can make a difference, we were making a difference. Each one of us was fighting for something we truly believed in by talking to people who can change our country. That made me never want to stop fighting. Coming back to our small Boulder community, I knew that everything that we’ve done is not a waste of time and we have changed people’s lives, if not our own.

2009 Advocate
Anika Suddath

Lobby Day: From a First-Time Advocate's Perspective

Lobbying on the hill this September 24, 2009 was definitely an experience that I will never forget and one that I’m proud to say that I was a part of. When I first heard about the Eating Disorder Coalition I was disappointed I wasn’t going to be able to participate in the lobbying day in April of 2009 but told myself I would be there for the next one and I was. I jumped with joy from my seat upon registering for the September lobby day but didn’t prepare myself for the agonizing battle of thoughts that soon followed. Despite my extreme enthusiasm for the upcoming day, my lack of self esteem, excessive self doubt and the controlling and abusive eating disorder thoughts began arguing that I wasn’t good enough to do such an honorable act. I started to fret about everything from what I would say, to how I would say it, to if I would make a fool of myself by saying something wrong and get banned from the hill or create problems for the EDC. I even began searching my closet for what to wear so that I would be taken seriously and not get laughed at. I sought reassurance from my boyfriend, family and friends that my list of fears wouldn’t come true and asked them to help me convince myself that it would in fact be a motivating experience. Today I can say with complete honesty that it truly was a motivating experience and I’m glad I didn’t allow my fears to steal that opportunity from me. It has always been my dream to give back to the eating disorder community that has helped me reach my own recovery and it was almost as if my eating disorder felt threatened by that idea and began showering my mind with negative thoughts. Unfortunately for ED, I know how to combat those thoughts now and live my life. I may have walked up the stairs to the House of Representatives with apprehension but I walked down them with confidence.

I didn’t know what to expect going into the day and was put at ease with the help of the members of the EDC, group leaders and even the other first time lobbyists. The training sessions and informational meetings prior to lobbying were helpful to understand how to effectively lobby and what it all entailed. We were able to role play sitting with the representatives and congressmen to clarify what we were going to say and how the meeting would operate. Being from Minnesota, my group leader was Kitty Westin and she fulfilled her duty and beyond by providing each of us a complete schedule of meetings and even a little background on each of the representatives and congressmen we were meeting with. This not only helped to ease my anxiety about where I was going but also helped with adjusting the main points I’d be making during the meeting. Kitty was very encouraging and made sure that each of us felt prepared in what we were going to say and the reactions that we might encounter. Fortunately, the responses we received in each of the meetings were positive for the most part. We were even able to convince Keith Ellison to co-sponsor the FREED Act before leaving his office. To see that kind of response and know that your words are truly making an impact, really clarifies what it is that you are lobbying for.

It was an emotional day and yet I don't think that I would change anything about it. I know for myself just being with the participants and listening to the stories being told really re-enforced why it is that I am working so hard on a day to day, moment to moment basis to remain in recovery. I truly feel lucky to be alive today because I was able to receive treatment for my eating disorder and I want to use that and fight for those that don't have that opportunity and also build a strong recovery so that I too can share my hope with those that are battling. I know that recovery is possible and worth it after seeing and hearing so many stories. Every time I hear that darn little voice in my head telling me not follow my meal plan or to work the food off through exercise or lie about what I did/did not eat, I think about all those that I have met who have reached that euphoric state of recovery and about fighting for those who are still battling because they don't have access to proper treatment. I know that I can do it because I've already proved the doctors wrong when they told me I wouldn't live to see my 20th birthday, drive a car or go away to college. It may have taken me 14 years to reach this point but I know that I have many more than that in my future and I'm going to make the best of them including lobbying until there is finally equality in the system!

Update on Parity Regulations

Dear EDC friends,

Thank you to all who called their Senators and Representatives urging them to sign a letter that puts pressure on federal agencies to promulgate the mental health parity regulations. We had more than 120 people call to weigh in on this issue. Because of this and similar grassroots efforts Sen. Franken (D-MN) was joined by 25 Senators in sending the letter to the Agencies asking them to promulgate the regulations in a timely fashion and according to Congressional intent. Rep. Kennedy (D-RI) was joined by 71 Members of Congress in sending a similar letter. This is a great showing of Congressional support - thanks for making it happen! While regulations have not yet been released by the Departments of Labor (DOL), Health and Human Services (HHS) and Treasury, we expect they will release interim final regulations by January 1, 2010. HHS Secretary Sebelius's response to the Congressional letters are attached.

Click here to read Secretary Sebelius's response to Representative Kennedy
Click here to read Secretary Sebelius's response to Senator Franken

As you may know, October 3, 2009 marked the one year anniversary of the enactment of the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act. Thanks to the tireless work of the EDC and other advocates around the country, one short year later we have built upon our parity victory by including mental health and addictive disorder benefits in every key health care reform bill pending in Congress. We are furthering this success by working with key members and staff to ensure that coverage for eating disorders treatment specifically will be included in any health care bill that passes out of Congress this year.

We will keep you informed! Thanks to everyone who has participated in grassroots advocacy to support our success here on the Hill!

In gratitude, Jeanine Cogan, EDC Policy Director