Friday, September 4, 2015

Some History of the #AnnaWestinAct

Dear EDC Advocates,

Anna Selina Westin
As EDC Fall National Lobby Day 2015 nears, I'm reflecting with humble awe, and a rather sobering mood, on the Anna Westin Act and the incredible work that went into creating and developing this piece of legislation, about which one Member of Congress recently exclaimed, "Who wouldn't support this bill?!" 

Before the #AnnaWestinAct was officially introduced, years of forethought and research went into creating the bill.  Insight and input was gathered from countless sources --including, and perhaps most importantly, from all of you who who reached out to the EDC with your stories about what 'wasn't working' in your attempts at receiving eating disorder treatment.  Insight and input was gathered from all those who came to EDC National Lobby Days and shared with us your thoughts and hopes for how to update the FREED Act.  Insight and input was gathered from all those who shared their "Ideas or comments/ways you want to be involved."  Insight and input was gathered from researchers, moms, dads, sufferers, carers, siblings, husbands, wives, daughters, treatment professionals, insurance experts, policy experts, Members of Congress, mental health organizations, best practice guidelines, the AED World Wide Charter...and the list goes on.  It is hard to be comprehensive or succinct about all the input, time, research, forethought and sweat that went into creating this phenomenal bill --a bill that has a very solid chance of passing into law.

Passing the Anna Westin Act into Anna's Law was on the forefront of the minds and hearts of everyone at the EDC when we finally sat down to write the first draft of the bill.  With all the insight and input listed above and with boatloads of Congressional research, we crafted a bill composed of not only solid-substance that stands to help countless impacted by eating disorders, but also a bill that includes no new spending --a key component in viable legislation these days.  

The Anna Westin Act differs from the FREED Act in that the bill provides that no new funding is appropriated to enact the bill.  Having no new funds attached to the Anna Westin Act was a difficult decision.  Having no new funds attached to it meant that we had to compromise on some of what we desperately wanted to ask for in the bill, on your behalves.  Thus, compromising was not easy -especially because we know how diabolical eating disorders are, and just how much hell and havoc they wreak on those who suffer, and their loved ones.  But we also knew that compromising was central to writing a bill that stood a true chance of passing.  Don't get me wrong -we didn't compromise to the point that the bill is watery.  Not at all!  

The Anna Westin Act, when passed into law, has the potential to change the way all health professionals and school personnel address eating disorders.  The bill calls for the training of health professionals on early intervention and identification of eating disorders; levels of treatment (including family-based treatment, in-patient, residential, partial hospitalization programming, intensive outpatient and outpatient); how to properly refer patients to treatment; steps to aid in the prevention of the development of eating disordered behaviors; and how to treat individuals with eating disorders.  IMAGINE a world where medical professionals are trained on all those things related to eating disorders! Can you fathom the enormous ripple-effect of early intervention?!  Thinking on that brings tears to my eyes.  I think of my friend Nicole who came to the introduction of the FREED Act on February 25, 2009 --she drove all the way down from Pennsylvania, hurriedly, after finishing exams.  It was the first time we met in person.  That evening she went to the emergency room at a prominent DC hospital, for chest pains (Nicole had had open heart surgery due to heart-damage related to her ED).  Nicole disclosed she had an eating disorder, that she hadn't eaten all day and that she was having chest pains.  After waiting three hours, Nicole saw a doctor who said they didn't treat eating disorders.  She was discharged shortly thereafter, having received zero medical intervention.  After that experience, Nicole became a tireless advocate --writing constant letters about the FREED Act and sharing her story with Members of Congress, even while receiving iron infusions.  On
April 25, 2010, EDC National Lobby Day, Nicole was supposed to join me on the Hill to advocate.  Nicole never showed up and I found out later that night that she had died.  Nicole died as a direct result of her eating disorder.  But she also died from lack of medical intervention and lack of insurance coverage for the treatment she fought so desperately to receive. Would the Anna Westin Act have saved Nicole?  I honestly think it could have.  

And that is something we thought about while writing this bill, "What needs to happen NOW in order so that eating disorders do not claim the life of one more precious human being?"  To answer that question,  we also considered all of your input from over the many years that you have advocated with us, supported us, joined with us and trusted us to lead the way on eating disorders legislation.  For that, we remain forever grateful. 

When I first discovered that the EDC existed, I had zero hope that anyone on Capitol Hill would ever give a care about eating disorders, let alone my personal struggle.  Meeting the EDC truly helped save my life.  In 2003, as a new advocate at Lobby Day with the EDC, I discovered I had a lot to learn.  It took me time to understand and get to know why the EDC advocated in they ways they did, how they advocated, why they worked in the ways they do, why they didn't pursue some legislative and regulatory efforts and why they pursued others.  In essence, it took me time to learn to trust that they knew what they were doing and it took me time to learn to trust the process of Capitol Hill.  Like so many, I came into eating disorder advocacy ready to fight and with tons of ideas for how we could eliminate eating disorders NOW!  When you have that exuberance and passion and when you know how deadly and horrible eating disorders are, it can be hard to be patient and trust the "process."  But like recovery taught me, learning to trust the process is part of...the process.  Trusting the EDC to be in control of decisions related to a disease I knew all too well was not easy to do either.  But learning to trust the processes of the EDC is something that made me a better person, professional and advocate. Getting to know the EDC also made me aware that I LOVE policy and regulation and the workings of Capitol Hill.  That is, in part, why I have remained a steadfast EDC advocate ever since June 13, 2002. I still have the same exuberance and passion (it's increased, actually) and I am thrilled to be putting it behind the Anna Westin Act.  From zero hope that anyone cared, to the Anna Westin Act --simply...stunning.

One of the things that was on my heart when I started writing this blog is that I wanted to offer everyone not only some of the history of the Anna Westin Act, but I also wanted to offer the encouragement that we know there is more to be done besides getting Anna's Law passed.  And, as Kitty Westin says, "We know the Anna Westin Act isn't the perfect bill."  Knowing that, I also want to encourage everyone reading this, and everyone who is coming to Capitol Hill for the M.O.M. March and EDC National Lobby Day, that if we stand united in our groundswell of efforts to pass #AnnasLaw, it will have a rippling effect.  The ripples will not only have profound effects on the lives of those impacted by eating disorders, but they will have an effect on the additional work that remains to be done.  It's like re-nourishing the body --is one meal enough to fully re-nourish?  No.  But that one meal has the potential to create the ripple effect and set re-nourishing in motion, for a lifetime.  Similar is the Anna Westin Act. Its passage into law will offer an impact with the potential for a lifetime of continuous effects.

Thank you for reading this.  May you feel inspired, and may you be ever encouraged by this, “From zero hope that anyone cared, to the Anna Westin Act…” 


Our work continues, ~Kathleen MacDonald, Director of Social Media & Advocate Relations

No comments: