2016 - The Year that Congress Passed and President Obama Signed Eating Disorders Legislation

On December 13, 2016, President Barack Obama signed H.R. 34, the 21st Century Cures Act, into Law.  This historic bipartisan legislation included included key provisions from the Anna Westin Act (S. 1865/H.R. 2515) including clarification of existing mental health parity law to improve health insurance coverage for eating disorders and life-saving residential treatment, early identification of eating disorders training for health professionals, and enhanced information and resources to help early identification of eating disorders by the public.

This legislation passed the House of Representatives with a 392-26 vote and then passed the Senate by 94-5.  I believe all Arizona's senators and representatives voted in favor.   Amazingly wonderful!

A one-page summary of the Anna Westin Act can be found here accompanied by a personal account of my trip to Washington, DC to lobby for this legislation, also here.  Amazingly,  the Anna Westin Act received the bipartisan support of 101 Senators and Congressmen (36 Republicans and 65 Democrats) including, from Arizona, Rep. Kyrsten Sinema and Rep. Ann Kirkpatrick who signed on as co-sponsors of the bill.

A very special thank you to them and to Senator Amy Klobuchar [D-MN] and Congressman Ted Deutch (D-FL] who introduced the legislation in 2015 along with their colleagues Senator Kelly Ayotte [R-NH], Congresswoman Ileana Ros-Lehtinen (R-FL], Senator Tammy Baldwin [D-WI] and Senator Shelley Moore Capito [R-WV].

[Blog note:  I spent most of 2016 advocating for my family member while she spent more than 180 days in hospitals and ER's as we attempted to keep her alive through legal means as well as imploring her mental health care provider and an insurance company to help her.   This periodic hospitalization continues.  We are grateful for the care including the important involvement of a special team and the coverage for that care that she has received, for without it, I truly do not think she would be alive today.

As you will learn here, our State Legislature has done nothing to provide Medicaid Coverage specifically for eating disorders because the one piece of legislation that could have started Arizona on the road to providing coverage died in a subcommittee.

I am so very thankful that the 21st Century Cures and Mental Health Reform Act incorporating the Anna Westin Act became law and to the many people who made it happen, starting with Kitty Westin whose telephone number was given to me years ago by a nurse here in an ER.  Kitty, the mother of Anna Westin who died more than 16 years ago and after whom the eating disorder legislation is named, picked up the phone at her home and talked with me perhaps for a half hour giving me encouragement to keep going in spite of enormous odds.

Perhaps something now can happen in Arizona so people with an eating disorder diagnosis will get the life-saving treatment they need and early so they will not go through what my family member and we have endured for so many years.

Again, those with what is known as Severe and Enduring Eating Disorders (SE-AN) deserve a chance and opportunity to get into recovery.  I recommend reading this piece found in the "Of Note" section by Stephen Touyz and Philipa Hay, published in the Journal of Eating Disorders (2015) 3:26.]

The Eating Disorders Coalition Lobby Day - October 28, 2015 - The Anna Westin Act

From the Mom's March on Tuesday to Lobby Day on Wednesday!

This year, as I've mentioned in previous posts and updates, we are lobbying for the passage of the Anna Westin Act.  As you'll note at the top of the page above, the Act has the dual designation H.R. 2515 and S. 1865.  This is quite significant - a document in the House and in the Senate, right out of the gate.  Rather than review here what's said in the document, I invite you to read this document.

I also invite you to visit the website of the Eating Disorders Coalition - http://www.eatingdisorderscoalition.org/   

When I originally wrote this last Fall, there were several links the addresses for which have been changed or deleted, unfortunately.  Among them was a great link to an Advocate's Toolbox that clearly explained the training we received.  We learned how to focus on the key points we wanted to make to each Congressperson in the half hour we had.  For newcomers to the advocacy process, this piece also clearly explained how a bill progresses to signature.  I imagine that with some diligence you may be able to find this information by going to the main EDC website linked above.

I am very happy to report that two of our Arizona legislators - Representatives Ann Kirkpatrick and Kyrsten Sinema have signed on as co-sponsors.

I urge you to ask your senators and representatives to support this legislation and to get it passed as soon as possible. 

So, now, I invite you to think about this following information:  The United States of America is composed of 50 states, a federal district (the District of Columbia), five territories and other possessions.  Each state has representation at the federal level - 2 senators and a varying number of representatives depending on the population of the individual state.  There are currently 435 voting members in the House. California, the most populous state, has 53 representatives.  My state, Arizona, has 2 senators and 9 representatives. 

Arizona is also estimated to have, out of a total population of 6,392,017, 66,934 males and 147,167 females with eating disorders.

The Eating Disorders Coalition tasks itself twice a year with the responsibility of organizing a lobby day and sending teams of citizen lobbyists to meet with their senators and representatives.  This year we learned that more than 300 people signed up to lobby - some states had many lobbyists, others as few as 1 or 2.  All came paying their own way and finding lodging as they were able.

The scheduling of each team's agenda, all with different people in different locations (except for the common meetings), boggles my mind!!!!  Having arranged conferences with breakout rooms, I have some experience with scheduling (including lunch and breaks), but the task the Eating Disorders Coalition team takes on twice a year is absolutely amazing and deserves accolades.  For this effort alone, I have become a financial supporter of the EDC and I hope others have or will, too.  

Omigosh.  Think about it.

As an example, our team's (8 people) lobbying day schedule included a training (for everyone) from 8 a.m. to 10:15 a.m. at a location quite close to Capitol Hill and the Senate/House office buildings.  It ended with a lobby day wrap up starting at about 4:30 pm back at our training location.  In between, our team met with, for half an hour, staff members of our two senators in the morning, broke for lunch in one of the cafeterias from about noon until 2 p.m., at which time we all gathered to hear more about the Anna Westin Act of 2015 and to meet two of the original sponsors of the bill, and then continued our lobbying from 3-4:30 pm in the offices of 3 of our 9 representatives. We walked a lot and very fast between the offices and buildings of our Congressional representatives.  Thank goodness for tunnels and helpful people who showed us the way given that it rained pretty much all day.

So think about this again - 300 lobbyists, 100 Senators, 435 Representatives.   Not only are more lobbyists needed, the EDC also must identify which of the Senators and Representatives are available and willing to set aside time for us and among those, which are key players in the advancement of the legislation (e.g. on what committees do they sit).  I realize it's more complicated even than this, but I wanted to try to get a handle on what was involved to put this on.

Our Arizona team of 8, most of whom were from the Phoenix and points northwest area except for me, the lone member from Southern Arizona, in the morning met in the Russell Senate Building with (in order) the staff members of Senator Jeff Flake and Senator John McCain in nearby conference rooms reserved for that purpose.  

Our team leader and a mom, Miriam, presented information derived from the above flyer - Training, Clarity of Parity and Truth in Advertising and statistics specific to our State regarding the number of people affected by eating disorders.  She noted that the Anna Westin Act has a Congressional Budget Score of 0 meaning that the cost of passing the Act is very low (funds have already been allocated to the NIMH and SAMHSA in connection with the Mental Health Parity and Addiction Equity Act of 2008) and summarized the purpose of our visit. Then two team members spoke of their individual experience, either as a mother or a person in recovery or as (in our team's case) a member of the staff of an eating disorder residential treatment facility.   I spoke twice - once in the morning and once in the afternoon, presenting as the mother of a 42 year old woman who has been fighting her eating disorder for 27 years and who had been diagnosed before there was much if any understanding about and the treatment of eating disorders.  Excellent counterpoints were presented by team members in recovery who had benefited from early diagnosis and effective, knowledgeable treatment by health professionals. We then invited questions from the staff members.

I hope to obtain a team photo, but in the meantime here I am outside the door of Senator McCain:

We felt welcomed and listened to and hopeful that the Senators would be persuaded to sign on.

We then walked the tunnel to I think the basement of the Dirksen Building where we enjoyed lunch in one of the many cafeterias available.  Nearby was the Senate Gift shop that we all explored, as well.

At 2 p.m. we gathered in a large meeting room in Dirksen (106) to hear from Kitty Westin and to meet original sponsors of the bill Senator Amy Klobuchar (MN-D) and Senator Kelly Ayotte (NH-R).  Notice the bipartisan (meaning from different parties) support.  In fact, the act has significant bipartisan support now in both the House and the Senate.  Each Senator received an award.

From there our team went on to the House Office Buildings - Longworth House and Cannon House - to meet and talk with staff members of (in order) Congresswoman Martha McSally (AZ-R), Congressman David Schweikert (AZ-R), and Congressman Paul Gosar.  We learned that while the senators in the "Upper House" had significant amenities such as conference meeting rooms, our representatives in the "lower house" devise creative solutions in order to meet with groups of lobbyists such as ourselves ranging from the corridor outside the office to a waiting area within an office to cafeteria areas and even to a storage area across the hall that has comfortable chairs!!  Our team managed  to present our case to all and again were welcomed and listened to with undivided attention.  Here I am at the door of Representative Martha McSally who I've had the pleasure of meeting and speaking to in private (about other issues like the A-10) at two gatherings prior to her decision to run for office.

We wrapped up our presentations after 4:30 p.m. and hurried back from C Street and up 2nd Street to the Capitol Hill Lutheran Church of the Reformation nearby.  Fortunately since my hotel was nearby, I was able to guide us all there quickly.  Everyone answered questions and shared our experiences before disbanding to either hurry and catch transportation home or to find a restaurant at which to have dinner.

I returned to my hotel and hopefully made my way to The Sonoma on Pennsylvania Avenue where I had not made a reservation figuring, mistakenly, that 6 p.m. wasn't too late to show up. (I had eaten at the Sonoma on Monday night arriving at 5:30 and hardly anyone was there.)  Well, the place was hopping with people pouring in and climbing upstairs to what I assumed was a Happy Hour area.  I was shown to a little table over in the corner near the bar (that suited me just fine), ordered a glass of wine and a bowl of soup to start.  I looked up to see a familiar face walk in - that of Heidrun D who had traveled down from the Boston area for the luncheon and March on Tuesday and lobby day Wednesday.  I invited her to join me and we spent quite awhile chatting and reviewing our experiences in Washington, DC as well as sharing our own stories.  

Thursday morning I had the luxury of sleeping in, did a bit of tourist-ing since I was so near everything and then made my way to the airport for the trip home.   I checked my bag so I wouldn't need to worry about it and settled in to finish a book.  I thought you'd get a kick out of the airport scene that greeted everyone at the Southwest counter.

What an action and emotion-packed trip!

The Second Annual Mom's (Mothers and Others) March, October 27, 2015

This year has been extremely difficult not only for my loved one but also for the members of the family (and our friends who have stood by us, thank goodness!).  I've repeatedly reached the point of saying, "I've done all I can" and then somehow energy wells up from someplace and I find that I can do a bit more.  Meanwhile I also have heard  people say, "you've done enough." Or, worse, "[provider] does not see any possibility for rehabilitation."  I disagree.

Earlier this year I drove up to Phoenix to witness Arizona State Senator Katie Hobbs bring attention to the lack of coverage for eating disorders here.  You can read about Senate Resolution 1003 and her efforts here.

Following the trip, I continued to pay attention what was going on in Washington, DC and elsewhere but had little energy to do more than that because things  got really grim.

Then the Eating Disorders Coalition announced through its website and press releases that the Anna Westin Act had gained bi-partisan support in both the U.S. House and Senate.  Not only that, but Annie Seal's earlier work in Missouri  aided now by many people also made the Arizona Daily Star here in Tucson!  You cannot imagine how startled I was to see the headline "Mo. law affects insurance rules on eating disorders" (6/29/2015 p A1)  on the front page!!!  about eating disorders!!!
A revolution!!!!

Fast forward and prompted by my husband's friends at Georgia Tech who this summer extended an invitation to us to join them for Homecoming Weekend in Atlanta, we decided to make a grand trip out of the entire situation.  He attended meetings in Washington, DC the week of October 19 and flew down to Atlanta on Friday.  I flew from Tucson on Friday to join him and them over the weekend of October 23-25, and then while he returned home, I flew on up to Washington, DC to attend the Mom's March on Tuesday, October 27, and to lobby on October 28.

Tuesday morning, my FitBit told me I walked about 6.5 miles as I made my way from my perfectly situated (thanks, Laura Collins) hotel to the Lincoln Memorial and points in between.  I discovered a wonderful little grotto with a fountain on the grounds of the Capitol Building, missed a great shot of the Washington Monument framed by trees displaying their fall foliage (because I figured I would get a better shot closer only to discover that the mall is being torn up by some sort of construction), walked up the steps of the Lincoln Memorial to again read Lincoln's speech, and took in a brief visit to the Vietnam Memorial (I visited this many years ago) before heading back and north towards the Busboys and Poets restaurant to enjoy lunch and a presentation by Dr. Mark Warren put on by F.E.A.S.T.  And, to say hi to Laura Collins and Leah Dean, among others and to meet Heidrun Dickson (with whom I was fortunate to have dinner Wednesday evening) and Jennifer D. T. Ouellette.

Following lunch, I trekked along with several people including Facebook friend Sarah H. W. who was pushing her grandchild in a stroller (so happy to meet her after all these years) back to the west lawn of the Capitol to be greeted by this scene of those gathering for the march (really, a rally).

As had several others already, I registered, created a rather plain poster noting that I was marching for my daughter, filled out a tag attached to a beautiful yellow rose that would be delivered to an Arizona congressperson, met and said hello to Kathleen and her mother, to Becky Henry, to Kitty Westin (who came to my rescue years ago by phone when one of her friends, who happened to be a nurse in a local hospital's ER gave me Kitty's personal number so I could call her - such support!!!!  I cannot begin to tell you how much that phone conversation meant to me), a few others and then found a place to sit and watch the proceedings.

A few weeks ago I bought and read cover to cover Patrick Kennedy's book, A Common Struggle.  If you haven't read it yet, I encourage you to do so.  I learned so much about the political process of getting legislation passed!  So, I greatly anticipated seeing him and hearing his remarks to us as he was the keynote speaker!!!  How exciting to have him on board with our efforts to gain attention to the need for better treatment and coverage of eating disorders!  Here he is -

Many others spoke, as well, including Kitty Westin, Annie Seal, Debra Schlesinger, Becky Henry, Kathleen MacDonald, Cherie Monarch, Johanna Kandel and the videographer who is creating a wonderful film.  I hope a reader here will help me identify her.  I know I've left others off this list and I apologise.  I did not see a program.  The event was wonderful!

Here's a terrific recap.  Those in green shirts have lost a family member to an Eating Disorder:

I encourage you, if you have not attended - or even if you have - to come next year!!!!