Why I March Against ED 

- Paula Bruner - 2015

Most people who know me would ask “You did WHAT?”… That’s right, I danced on the lawn of our Nation’s Capital, and I didn’t care what anyone else thought.  I danced to celebrate and honor one of my daughter Katie’s wishes.  So many times she asked me to dance with her, insisted she was going to get me to dance – she did!  I carry Katie with me, always in my heart, so we danced….and we marched…..and we were citizen lobbyist – in the fight against eating disorders.  Another shock – I have never been involved in government or politics.  I appreciated (and needed) the Schoolhouse Rock! lesson I’m Just a Bill.  For me, this two day event, October 27 and 28 was truly life-changing.  And here is why…

Tuesday morning I walked to the lawn of the Capitol to join a group learning a dance from #Shake It For Self-Acceptance.   The name says it all, a fun dance to celebrate the importance of self-acceptance.  So many times dancing is about judging the performer and the performance, regardless of the setting.  This dance is the opposite – it is about acceptance with dancing – no judgment.  This dance would be wonderful to teach in high schools, colleges, and throughout the Tri-State area.

 The MOM March, Mothers, Families and Advocates started in the afternoon and gave me the opportunity to make new friends, visit with friends from throughout the country and a time to be face-to-face with wonderful friends from Mothers Against Eating Disorders (MAED), an on-line support group.  Being together with friends passionate about the needs of mental health and fighting against eating disorders strengthened my desire to see change in the field of mental health.  Every person attending had their own unique story of struggle with mental health, either personally, with a friend or loved one.  Purple shirts were worn to represent individuals in recovery; green shirts were worn by those that lost a loved one to an eating disorder.  I wore a green shirt.  Each story is like a roadmap with missing roads; roads “under construction” far too long.  We seemed to connect immediately, united in our goal to build a highway for awareness and access to effective eating disorder treatment.  I was inspired listening to Patrick Kennedy speak, and yet somewhat horrified to realize he’s been seeking mental health parity for about twenty years.  It seems inconceivable that as a nation, we do not provide the same opportunities for recovery from mental health illnesses as we do physical health illnesses (parity).  Johanna Kandel, Founder and CEO of The Alliance For Eating Disorders Awareness encouraged us to keep advocating – she shared one of her experiences as a citizen lobbyist.  She walked into her representative’s office and was greeted with the first comment being – I am associated with an insurance company – I will not sign on to a mental health parity bill.  She took that as an opportunity to raise awareness about eating disorders.  Johanna told her representative at some point in his life he would likely be in a situation where someone in his life would need mental health care, and she hoped he would remember their conversation, and how to reach out for help.  She knew this because according to the World Health Organization, 1 in 4 people will be affected by mental or neurological disorders at some point in their lives.  Years later this same gentleman told Johanna his family was affected by an eating disorder, and he remembered her advocating for access to treatment for mental health.  

Evening fell and with it came a chill to the air – “Mamma Deb”, Debra Schlesinger founder of MAED read the names of those beautiful faces on the posters “We March To Remember”.  We marched to be their voice, to fight against the terrible illness that robbed their lives.  We marched because we know recovery is possible. 

Thursday morning 200 citizen lobbyist joined together to find our assigned delegation, and receive training from Eating Disorders Coalition for Research Policy and Action (EDC), which actually did include Schoolhouse Rock!….I’m just a bill…. Our goal was to raise awareness and ask our representatives to support The Anna Westin Act.  The Act was named after Anna Westin.  Anna’s doctor told her she needed to be hospitalized for her eating disorder.  When she went to be admitted and her insurer refused to cover inpatient treatment.  Shortly thereafter, Anna took her life as a direct result of her battle with anorexia.   I met Kitty Westin (Anna’s mother) and admire her strength in turning her grief into a positive force for change.  She started the Anna Westin Foundation in 2000 and has been fighting for mental healthcare reform along with other organizations.  The Anna Westin Act is in both the House (H.R. 2515) and Senate (S. 1865).  It is a bi-partisan bill designed to have a zero or almost zero CBO score.  Short summary:

Training – training health professionals, school personnel, and the public to identify eating disorders, intervene early and prevent behaviors that may lead to eating disorders. 

Clarity of Parity – clarifies that the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 includes residential treatment for all mental illnesses and substance use disorders.

Truth in Advertising – The House bill (H.R. 2515) requests the FTC to study and report on whether regulation is needed for digitally altered images of humans in advertising and if so, strategies to achieve regulation.

We reviewed what to expect in our meetings.  I was assigned to the Michigan and Indiana Delegation with two others.  Our schedule included meetings with seven offices:

Congressman Sander Levin (MI-D)
Congressman Luke Messer (IN-R)
Congressman Larry Bucschon (IN-R)
Congresswoman Susan Brooks (IN-R)
Senator Daniel Coats (IN-R)
Senator Joe Donnelly (IN-R)
Senator Debbie Stabenow (MI-D)

I am optimistic with your help and continued outreach we will have representation from Indiana. Dr. Mark Warren, MD, MPH, FAED, Chief Medical Officer of The Emily Program in Cleveland, Ohio sat next to me during instructions; he was part of the Ohio delegation and was hopeful to gain support.  Several weeks prior to Lobby Day I received an email from Katrina Velasquex, Esq., Policy Director from Eating Disorders Coalition (EDC) in Washington DC.  “Indiana has been neglected in the past!  I actually have planned for the Indiana team to meet with 5 Indiana offices that are VERY important to the health legislative process!  Surprisingly, the Midwest states actually hold a LOT of power with the health legislative process, but we really don’t get that many people coming in town for lobby day so that we can set up meetings.”  I was the only person from Indiana on the Michigan-Indiana Delegation.  Several states delegation was large enough that they were divided into teams.  As of this writing there were 34 co-sponsors in the House (H.R. 2515) none from Ohio, Indiana or Kentucky; five co-sponsors in the Senate (S.1865), none from Ohio, Indiana or Kentucky. 

We do not have to go to Washington D.C. to have our voices heard.  The EDC website http://www.eatingdisorderscoalition.org offers information to become involved and make your voice heard.  I encourage everyone involved in mental health to be a citizen lobbyist – also anyone touched by mental health.  Our representatives need to ensure mental health, and specifically eating disorders are recognized as a public health priority.  

I will continue to reach out to my representatives, with greater resolve.  I know to make a change we have to use our voice, and one voice can make a difference.  I have much to learn about the process, and look forward to hearing the barriers we face from their perspective, so we can move forward with solutions.    

I would like to offer thanks and gratitude to each person and organization responsible for any part of the MOM March and Lobby Day, especially the founders, Mothers Against Eating Disorders (MAED), The Alliance for Eating Disorders Awareness, and the Eating Disorder Coalition. Tri-State Eating Disorder Resource Team (www.edrteam.org) was proud to be a partner.  Together I believe we will make a difference.

For all the voices we march for:

“May your dreaming never end and your voice never die.” – Anna Westin