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…” 


#TheTimeIsNow

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


Wednesday, August 26, 2015

Patrick Kennedy to Speak at MOM March


Dear EDC Advocates and MOM March supporters,

photo credit: www.ACommonStruggle.com
We are thrilled, humbled, honored and excited to announce that  Patrick J. Kennedy will speak at the MOM "Mothers & Others" March" this October 27th! ~ Patrick Kennedy is a long-time hero and champion to the eating disorder field and to all those impacted by mental illness. Though he left Congress, he continues to devote his time to Mental Health Parity, most recently: http://tinyurl.com/pencyt9.

On October 5, 2015, Patrick's book, A Common Struggle, comes out. The book details his personal and political battle with mental illness and addiction, exploring mental health care's history in the country alongside his and every family's private struggles. You can pre-order your copy today via: www.acommonstruggle.com

We are so thankful to Patrick, his family and staff, for generously giving of his time to the 2nd Annual MarchAgainstED! 

Tuesday, August 18, 2015

Affording Lobby Day

Dear EDC Advocates,

With EDC National Fall Lobby Day and the 2nd Annual M.O.M. March fast approaching, we wanted to address the cost of coming to Washington, DC.
 
We know that it can be expensive to travel to DC and we know that many advocates struggle to come up with funding for their trip to EDC National Lobby Day.  We very much empathize with you.  Therefore, we want to offer you the encouragement that there are some simple things to do that might help you make your trip to DC possible, as well as the most cost-effective:
  • consider making an "EDC National Lobby Day Fund" jar and depositing a set amount (or loose change) every week
  • consider swapping out things like a daily coffee/tea purchase for a deposit into your "EDC National Lobby Day Fund" jar
  • start asking for donations (monetary, frequent flyer miles, etc.) from family members
  • some advocates have made GoFundMe pages to support their trip to EDC National Lobby Day
  • connect with friends to share a hotel room
  • connect with friends to share hotel-alternatives like a hostel or Air BnB*
  • consider car-pooling if you're driving to DC
  • start looking for flights today --save your search and get fare updates
  • consider staying outside the district of DC and using the Metro to get to Capitol Hill
Those are just a few ways that might help you save for a trip to DC so you can join us for EDC National Lobby Day.  If you have other suggestions, please comment on our blog or on our FB page!

Of course, we also know that not everyone has "loose change" to spare --eating disorders can wreak havoc on finances; we know, we've been there.  We also know that not everyone can take time off from treatment (whether your own or the treatment of a loved one), time off from work, or time away from family.  We simply want to encourage you with this blog post that if you are able to come to EDC National Lobby Day and the M.O.M. March this fall, there are things you can do to help save up for your trip and make your trip a bit more cost-effective.

Because we know the cost of coming to DC, we promise you to always keep registration fees as low as possible --please know that the EDC does not 'turn a profit' on Lobby Day...your registration fee goes to cover the cost of hosting Lobby Day and that's all. 

We also promise you that if you cannot attend EDC National Lobby Day in person, we will continue to offer ways to get involved from afar.  But to that end, we do highly encourage you to do everything that you can do (that which is wise and healthy for you), so that you can come to Lobby Day.  We continue to hear from advocates --whether after their 1st or 20th time advocating with us-- that EDC National Lobby Day is one of "the best experiences" they've ever had.  We want YOU to have a chance to have that experience and we hope that you will be able to find a way to join us this October 27 - 28th as we storm Capitol Hill with our voices, stories, united message and our constituency-based influence.   

Our voices make a difference, your voice makes a difference and #TheTimeIsNow to pass the #AnnaWestinAct into #AnnasLaw.  We hope to see you soon.  



Our work together continues, ~the EDC



Wednesday, August 12, 2015

EDC Breaking News #AnnaWestinAct



August 12, 2015

Today, patients, community leaders and advocates joined Congressman Ted Deutch at Alliance for Eating Disorders Awareness today for a round table during which the Congressman encouraged all those impacted by ‪#‎eatingdisorders‬ to advocate on eating disorders. 




‪#‎TheTimeIsNow‬ to ‪#‎MarchAgainstED‬ and advocate on the ‪#‎AnnaWestinAct‬ during ‪#‎EDCNationalLobbyDay‬ on October 27th and 28th.




To read more from the Congressman: Press Release On Visit To Alliance For Eating Disorders Awareness

 
To join in our advocacy at the 2nd Annual M.O.M. March and EDC National Lobby Day, please register at: http://tinyurl.com/p58sjo4

Monday, August 10, 2015

Is This Your Member of Congress?

Dear EDC Advocates,

If any of these folks listed below are your Members of Congress and if you want to help with a special project related to the Anna Westin Act (it won't take much time), please contact Kathleen MacDonald at: km@eatingdisorderscoalition.org
THANK YOU so very much, ~ The EDC

(PS: to find out who your Members of Congress are, please go to:

  • www.house.gov and enter your zipcode in the box at the top right hand corner of the webpage.
and
  • www.senate.gov and use the drop-down arrow in the top right hand corner of the webpage to find your Senators listed by state.

Rep Paulsen    MN
Rep Bilirukus    FL
Rep Holding    NC
Rep Emmer    MN
Rep Cochran    MS
Rep Castor    FL
Rep Jenkins    WV
Rep Rouzer    NC
Rep Walker    NC
Rep Kelly            PA
Rep Butterfield NC
Rep Ellmers     NC
Rep Matsui     CA
Rep Blum            IA
Rep Buchanan FL
Rep Meehan    PA
Rep Price    GA
Rep Mooney    WV
Rep Kline           MN

Sen Toomey    PA
Sen Gardner    CO
Sen McCaskill    MO
Sen Murray    WA
Sen Boxer    CA
Sen Stabenow    MI

Thursday, August 6, 2015

EDC Supports Mental Health Bill

As we continue working hard on the ‪#‎AnnaWestinAct‬, we also continue our work on other ways to positively impact mental health issues. 

Recently, we were one of over 40 organizations who signed this letter -------->
in support of S. 1893, the "Mental Health Awareness and Improvement Act of 2015."

The Mental Health Awareness and Improvement Act of 2015 does several things, including: reauthorizing and improving programs aimed at increasing awareness, prevention, and early identification of mental health conditions, promoting linkages to evidence-based treatments and services for children and youth and reauthorizes the Garrett Lee Smith Memorial Act, one of the foundational programs underpinning our national suicide prevention strategy.

While we know the #AnnaWestinAct is going to help many and help save many lives, we also know there is, concurrently, more to be done to help ALL those impacted by eating disorders. As we say so often: our work continues.

Thank you for advocating with us. ~ the EDC

Thursday, July 30, 2015

#EDCActionAlert -Anna Westin Act



Dear Eating Disorders Coalition advocates, activists and supporters: ‪#‎TheTimeIsNow‬ to use YOUR voice to advocate for the ‪#‎AnnaWestinAct‬.

Below are pictures of the simple (but very necessary) #EDCActionAlert.  The #EDCActionAlert involves you making just TWO phone calls and one Tweet. These two calls and one Tweet CAN make a huge difference.

Please let us know how your calls go -- we'll be following on Twitter!

If you have ANY questions, please post in comments below or email: km@eatingdisorderscoalition.org
  

















THANK YOU for considering giving of your precious time and energy to help ensure passage of the #AnnaWestinAct. #‎AnnasLaw‬ is long overdue.