Capitol Hill and Eating Disorders: Does my Voice Make a Difference

Kathleen McDonald of the Eating Disorder Coalition Addressing Eating Disorders on Capitol Hill

EDH: Welcome to today’s #EDHchat! Our topic is addressing eating disorders on Capitol Hill. Special thanks to @EDCoalition for helping us make this twitter chat possible!

We would like to start by welcoming our special guest, Kathleen MacDonald, who will be tweeting as @EDCoalition! Kathleen is the policy & communications director at the Eating Disorders Coalition @EDCoalition.

It’s great to have you all here today, Kathleen! Let’s get started with some of our questions.

What legislation is currently proposed to help eating disorder sufferers?

Kathleen: The FREED Act which is the Federal Response to Eliminate Eating Disorders. It is the first-ever & only piece of legislation in the history of Congress to address ED research, education, prevention, & treatment. The FREED Act was first introduced in 2009. It has been reintroduced every year since, as advocates work to gain legislative support for the bill, leading to a hearing & a vote!!

EDH: What things can we do to help support this legislation?

Kathleen: Most importantly, we need your voice at Lobby Day. I remember when I first heard about Lobby Day and it sounded really enigmatic and I really didn’t know why it mattered. But now I know. Lobby Day matters for many reasons –especially because when Members of Congress and their staff hear from real people, they listen. Our stories matter. And our stories make a difference.

The opposite is also true. If we don’t share our stories, we stand to not make a difference with Members of Congress because what they don’t know, they don’t know. We must make them aware of the FREED Act, aware of why the FREED Act is necessary, aware of how the FREED Act will save lives… aware of how people suffer, aware of insurance company denial tactics and gamesmanship… AWARE of ALL the problems people with EDs face on a daily basis –something that, at present, only an act of Congress will fix.

EDH: What is a lobby day and how does it help support legislation efforts?

Kathleen: Lobby Day is AMAZING. Twice a year advocates come to Capitol Hill for EDC National Lobby Day to meet with other advocates and team-up to meet with Congress and discuss eating disorders on Capitol Hill. Lobby Day is a chance to find your voice, use your voice, listen to others’ stories, share your story, be heard…

Be part of a collective advocacy that makes a significant change! And to be part of a group of people with a passion stronger than this disease we call “eating disorder.”

I have never been part of something so amazing as EDC National Lobby Day! I have seen nothing come close to eliminating eating disorders as the combined power of EDC Advocates on Lobby Day.

EDH: What if we cannot make it to D.C. for Lobby Days? How else can I help?

Kathleen: OOH!! Great question –there are so many ways to help!! We will announce “ways you can participate in EDC National Lobby Day from afar” a couple days prior to Lobby Day.

Of course, we encourage as many people to attend Lobby Day as possible, but we understand how difficult it is to be there. To leave a job behind, find the money for travel, leave a loved one behind, etc.

We’re not announcing the “ways you can participate in EDC National Lobby Day from afar” until shortly before Lobby Day. We have some things still being finalized by our very supportive Members of Congress.

All of them are working hard at finalizing documents that we will use at Lobby Day & we’ll get them out to the public as soon as we can.

EDH: How can I contact my local representative to show my support for eating disorder sufferers?

Kathleen: Since we have Lobby Day coming up, we want to be a collective voice on behalf of all who suffer. We encourage people to wait until Lobby Day to contact their federal representatives and senators. The reason behind this strategy is simple: there is power in numbers! If everyone makes one phone call every day, that is one thing.

If 50 people make a phone call to their Member’s office all on the same day –that gets the staff’s attention…Which in turn, gets their boss’ (Member of Congress’) attention. We will provide full and complete details with easy to follow instructions on how to contact your Members of Congress about EDs.

EDH: How does the Eating Disorder Coalition support legislation for eating disorders?

Kathleen: There are so many aspects of how we (we meaning you, me and all our advocates) support legislation for eating disorders on Capitol Hill. To give a little background: the EDC has been the voice of those impacted by eating disorders since 2000.

We have grown to include countless individual advocates and over 40 member organizations. Prior to the EDC’s efforts on the Hill, a comprehensive bill on eating disorders had never existed in the history of Congress.

This meant that the advocates of the EDC first had to educate Members and their staff on the Hill about the seriousness of EDs. I’m sure you can imagine, this was not a simple process in large part because of stigma (which still exists today).

However, we were finally able to raise enough awareness on Capitol Hill and get Members of Congress to pay attention to the problem. Again, this was because of the EDC advocates who returned year after year for Lobby Day.

Our journey was a slow, and sometimes arduous, one until the FREED Act was introduced. With the FREED Act, we had a beacon of hope, a solution, to the myriad of problems facing all those impacted by eating disorders, including parents, sufferers, treatment providers, siblings, researchers, etc.

The EDC has continued to sponsor EDC National Lobby Days twice per year to gain support for ED legislation like the FREED Act. We also will continue to hold Congressional briefings to educate staff about eating disorders.

We will continue to develop new legislative initiatives to support those with eating disorders. We will work with all advocates to empower them, inspire, & to provide a platform for their voices to be used for our collective mission.

As well as for their own personal journey –whether that’s catharsis, healing, empowerment or in memory of a loved one. We stand beside all who need a place to use their voice in order to make a difference.

EDH: How can I become a support member of the Eating Disorder Coalition?

Kathleen: You can find information about membership on the EDC website.

EDH: Will these advocacy efforts make a difference?

Kathleen: Indeed the advocacy efforts of EDC Advocates have made, and will continue to make, a difference! It may sound like a small thing that EDC advocates have created awareness and educated Members of Congress –but it’s not a small thing.

In fact, years of educating and raising awareness is an enormous accomplishment. W/o Congress knowing that EDs are serious, they wouldn’t know there was a problem in their hometown that needs Congressional intervention.

We cannot give up on our journey to pass the FREED Act and work tirelessly on other advocacy issues pertinent to those impacted by EDs. We must continue to partner together, individuals, organizations, families, etc. to make further change happen.

To measure the success of the EDC’s advocates isn’t always something one can chart on a graph. Example- a woman in Ohio was able to get treatment in part because she came to Lobby Day & established a relationship with her Senator.

A few other accomplishments include eating disorders being talked about at nearly every single Patriots for Parity Tour stop. Research funding allocation for eating disorders…Members of Congress getting help for their loved ones.. and partnership with national organizations to successfully create the 1st Ever M.O.M. (Mothers and Others March) on DC this Sep 20.

EDH: How can I become part of the EDC Letter Writing Campaign?

Kathleen: Stay tuned on FB and Twitter for details of this fall’s letter writing campaign! You can write a letter specifically designed to coordinate with EDC National Lobby Day efforts, The more letters written at the same time, on the same topic, the better!!!

EDH: Thank you to everyone who participated in our Twitter chat today! And thank you for the great insight @EDCoalition! We can all play an important role as advocates in the ED community! Please stay tuned for future Twitter chats from EDH!

EDH: If you are in need of resources for an eating disorder, visit our website at Eating Disorder Hope.