Advocates on a Mission – EDC Advocacy Day 2018

Karen Krygier
The energy in the room was palpable with passion and commitment as advocates gathered in Washington, DC.

Everyone was there to fight the good fight for support of eating disorder prevention, treatment and recovery, and continued financial coverage.  With open hearts and pure compassion, a group of at least 100 people (from the US and one from Turkey!) committed to a day of education, sharing personal stories and lobbying for signage of the letter to enact the 3rd provision of the 21st Century Cures Act (passed in December 2016) on behalf of people suffering from eating disorders.  I was not at all surprised to witness the profound spirit and shared purpose that united the room.  The day started with well-deserved recognition of Kitty Westin who was instrumental in the signing of the Anna Westin Act of 2015 as well as the Cures Act.

We quickly got acquainted with the agenda for the day, mainly being to thank congressional members/staffers for support of the Cures Act, to educate on updated statistics, to outline current needs, and to ask for signatures by May 4th on the bipartisan letter to Health & Human Services (HHS), urging enactment due to slow implementation of adequate training for health care professionals (Section 13006 of the Act).

Specifically, this provision will enable HCPs to:

  • Prevent and detect development of eating disorders
  • Provide intervention services
  • Properly refer to specialists or treatment centers

I was quite impressed with the majority of the staffers (the right-hand people of the congressional members) and their level of engagement during the ~30-minute meetings. More so, I was impressed by their understanding of the gravity of eating disorders.

A few highlights from these meetings include:

  • Specific interest in mental health issues
  • Understanding that rural areas are generally underserved (this is similar for some other mental health issues)
  • Acknowledgement of disruptive messages/misinformation coming from the media often triggering to those with eating disorders
  • Some knowledge of prevalence of eating disorders in specific sports (e.g. wrestling for boys/men)
  • Possible opportunity to partner with the Young Women’s Leadership council in Congressman Emmer’s district
  • General agreement that the statistics surrounding eating disorders are staggering

With 5 meetings it was a full day indeed! We navigated raindrops, DC traffic, the cafeteria and security lines between the Russell Senate Building and various Congressional buildings on Capitol Hill. All in all, I was deeply touched by the power of voice from advocates who have lived with and survived the challenges of various types of eating disorders. 

I do believe that together we can continue to push for legislation, to educate, to support and most of all, to simply care for the health and well-being for those vulnerable to and diagnosed with eating disorders.


A special thank you to Lisa Radzak, Executive Director of the Emily Program Foundation and Valentina Kostenko, Emily Program Foundation volunteer for rocking Team #17!