Wednesday, November 3, 2010

Highlights from September's Congressional Briefing

"I've been to every single EDC Congressional Briefing, and this was the best one yet!" ~ That is one of the many compliments we received for September's Congressional Briefing, "The Federal Response to Eliminate Eating Disorders Act: How Congress Will Save Lives By Passing this Bill" hosted by Senator Tom Harkin (D-IA). The room was packed with standing room only. EDC Advocates in the audience reported that the Congressional staffers presented were "moved" and "took vigorous notes" throughout the briefing. This is impressive because Congress was set to depart the Hill that very day --yet these staffers made time to attend the EDC's briefing to learn more about the FREED Act.

The first speaker of the afternoon was Jillian Croll, PhD, RD, MPH, Director, Communications, Outreach, and Research of The Emily Program. Her talk was titled, "Expanding our Understanding of Eating Disorders through Research". Dr. Croll highlighted the need for expanded research funding and opportunities. "Clearly, there is much more to know about eating disorders. Finding solutions to these challenges is imperative. Some of the things we don’t know about eating disorders are severely impacting, and killing, people.” Dr. Croll described the personal impact that the FREED Act's research section will have on families and individuals affected by eating disorders when she told the story of "Julie". "Julie was a kind and gentle person; a therapist who worked with young people; with a gift for connecting with people. She was closely connected to her mom, dad, sister and brother-in-law. Julie died on January 7, 2010, at the age of 31, after a 7 year battle with an eating disorder." Dr. Croll continued, "At a lunch with her parents last week, I was struck by how many barriers they and Julie faced in the pursuit of care for her eating disorder. Uninformed physicians, difficulty accessing treatment due to lack of specialized care, and insufficient and ineffective treatment when she was finally able to access something. ...We must identify even more effective methods of treating eating disorders and find the most efficient and practical ways to provide those treatments. Furthermore, we need to make it easier for individuals with eating disorders and their families to find reputable and effective treatments." Dr. Croll closed her speech with a very powerful message: " Passing the FREED Act is a tangible, viable step towards greater understanding and action that will yield life-improving and life-saving results. Every step we take towards knowing more helps us to prevent more unnecessary, intolerable losses like Julie and her family have had to endure."

The second speaker was Wendy Oliver-Pyatt, MD, FAED, CED, Founder and Executive Director of Oliver-Pyatt Centers. Dr. Oliver-Pyatt 's talk was entitled "How Obesity Prevention Can Trigger Eating Disorders: Why We Need to Address Both in Tandem". The central message of her speech was, “It is important that special care be taken in the construction and implementation of “obesity prevention” programs to minimize any harm that might result.” Dr. Oliver-Pyatt discussed the widely-accepted recommendations made by the Academy of Eating Disorders in relation to obesity prevention, such as: “Interventions should focus on health, not weight…” and, “It is unrealistic to expect all children to fit into the “normal weight” category. Thus, interventions should not be marketed as “obesity prevention.” Rather, interventions should be referred to as “health promotion…” Dr. Oliver-Pyatt concluded by saying, “We need to implement a plan that is scientifically driven, and that will not cause harm.”

Chevese Turner, Founder and CEO of the Binge Eating Disorder Association, spoke next. Her talk titled, “Bringing Binge Eating Disorder into the Light: A Personal Perspective” held a captive audience as she candidly shared her struggles with BED –Binge Eating Disorder. Ms. Tuner highlighted the connection between BED and Obesity, “Binge eating disorder represents the greatest number of individuals with an eating disorder. In fact, 1 in every 35 US adults is affected and 70% of those with the disorder are considered overweight or obese.” In closing, Ms. Turner spoke of the “joy” that she discovered when she received proper treatment. “After several years, I once again sought treatment. My new therapist diagnosed me with “binge eating disorder.” I cannot convey the liberation I felt. The distress and preoccupation with food actually had a name. I realize this is difficult to believe, but I was overjoyed! It meant I was not alone and there were others who were struggling. It also meant, for me, that I could address my issues without guilt and shame. Responsibility for the disorder now belonged to me and I felt relief.”

I was the last speaker at the briefing. I spoke about my role as the Education and Prevention Coordinator for the Gail R. Schoenbach F.R.E.E.D. Foundation. In this capacity, I serve as a patient advocate. To illustrate the need for the patient advocacy piece of the FREED Act, I shared three stories of young woman who lost their lives due to lack of proper treatment and/or coverage of their eating disorder. I asked the audience to consider how the outcome for these young women might have been different had they had a Patient Advocate. “I want you to consider what you think might have been different if Nicole (Boice) had had a Patient Advocate. I firmly believe that Nicole would not have suffered as she did. I believe that the doctors would NOT have dismissed Nicole’s chest pain. I believe that Nicole’s insurance company would have authorized the life-saving treatment that Nicole was begging for. And as a result of having a better trained and fully funded Patient Advocate, I believe that Nicole, my dear friend, would not have died in her sleep just one night before she was supposed to leave to be here on the Hill, lobbying by my side for the FREED Act last April 27, 2010. I believe that Nicole’s family would not have had bury their beloved Nikki on April 30, 2010 –just three days after she was supposed to be alive and well on the Hill like all of you (at our April Lobby Day)”.

Jeanine Cogan, Ph.D., Policy Director for the EDC, wrapped up the briefing by inviting questions from both Staffers and audience members, and summarizing why the FREED Act needs to pass sooner rather than later, so that more lives are not senselessly lost. The briefing proved an informative and powerful ending to the EDC's September Lobby Day.

To read the speeches from the briefing, please visit the EDC homepage and click on the link.

1 comment:

lynn said...

I had the honor of attending my first EDC Lobby Day and it changed my life. My 17 year old daughter suffers from ED and in her name and quest for recovery I spoke to six different members of congress' offices. I truly believe our group made a difference. One congressman picked up the phone and added his name as sponsor to FREED act right after our presentation. Pretty powerful stuff!!! My daughter and I will both be at the next EDC Lobby Day!!