FREED Act Introduced!

The Eating Disorder Coalition (EDC) applauds Representative Ted Deutch’s (D-FL)  introduction of H.R. 2101 the Federal Response to Eliminate Eating Disorders Act of 2013 (FREED Act). The FREED Act is comprehensive legislation that is a crucial step in responding to eating disorders.

“Eating disorders have the highest mortality rate of any mental illness, and yet those suffering too often find themselves marginalized and without treatment,” said Congressman Deutch. “The ignorance in our society surrounding eating disorders is costing us lives, and the federal government has a responsibility to take action. I have sponsored the FREED Act to better educate our communities about eating disorders, provide for much-needed research, and ultimately improve access to treatment before it’s too late.”

 

EDC President Johanna Kandel said, “We thank Congressman Deutch for being a champion for eating disorders and are grateful that he has introduced this important piece of legislation. The FREED Act will not only help us to better understand eating disorders, it will improve the access to treatment for those currently suffering with an eating disorder. Eating disorders are not a partisan issue and the FREED Act has the potential to save thousands of lives. We urge Congress to pass this bill quickly.”

 

The FREED Act would provide funding and direction to NIH for research and surveillance, provides for education and prevention activities, and improves access to treatment of eating disorders by requiring coverage of eating disorders be consistent with coverage of medical/surgical benefits.

The introduction of the FREED Act was a focus of EDC’s spring lobby day. EDC members and supporters traveled to Washington to advocate for the introduction of the FREED Act, and to increase support for FREED and eating disorders policy on the Hill.

Original cosponsors of H.R. 2101 are:  Reps. Gerald Connolly (VA-11), John Conyers (MI-13), Keith Ellison (MN-5), Lois Frankel (FL-22), Alcee L. Hastings (FL-20), Hank Johnson (GA-4), Carolyn Maloney (NY-12), Carolyn McCarthy (NY-4),  James Moran (VA-8), Patrick Murphy (FL-18), Richard Nolan (MN-8), Chellie Pingree (ME-1), Jared Polis (CO-2), Allyson Schwartz (PA-13), and Debbie Wasserman Schultz (FL-23).

 

 

EDC Applauds Christine Quinn’s Bravery

The Eating Disorders Coalition (EDC) applauds New York Mayoral Candidate Christine Quinn for her bravery in discussing her struggle with bulimia. (For those of you haven’t read her story click here to see the NY Times article)  It was a courageous thing Ms. Quinn did by sharing her story.

The EDC is very familiar with the shame and secrecy that often surrounds eating disorders.  So often those suffering with eating disorders, particularly public figures are ashamed of their personal connection to an eating disorder. By Ms. Quinn openly sharing her story, she has challenged the stigma around eating disorders; she has assured millions currently suffering with an eating disorder, and millions more in recovery that they are not alone. If you are currently suffering or have a family member who is, please know this: you are not alone.

Thank you to Ms. Quinn for sharing your story. We are grateful that she had access to and received the necessary care to recover from her eating disorder. We hope that many others may be inspired to receive the care they need by reading her story. One of the many reasons we continue to work hard to ensure that everyone who needs care has access to it; by advocating for the FREED Act and for the Congressional letters regarding parity for eating disorders.

 May Ms. Quinn’s courage also embolden others to share their personal journey through an eating disorder into recovery. It is time that we bring eating disorders out of the shadows.

EDC Urges You To Contact Your Representative

 Thank you to all who supported EDC’s success working with the Senate, where 11 Senators signed a letter to the Secretary of Health and Human Services urging her to provide more specific guidance in the parity rules so that people with eating disorders receive the care to which they are entitled.

The EDC continues our efforts to improve federal policy for persons with eating disorders.  As such, we were advocating for the House to send a similar letter. The more pressure we can put on HHS the more likely they are to clarify eating disorders coverage in the regulations.  Our efforts paid off! We now have a House side letter with three champions: Ted Deutch (D-FL), Hank Johnson (D-GA) and, Alcee Hastings (D-FL).

However, now we need to get Members to sign on to the letter and we need your help. The EDC’s asks you to please contact your Member of Congress. To contact your Representative:

1. Go to www.house.gov and enter your zip code in the box that says ‘Find My Representative’ 

2. Once you do that you’ll see your Member's information come up, click on the little envelope icon under your Member’s name to contact them. If for some reason this doesn’t work, go directly to their page and click on the ‘Contact Me’ link. That should take you to a web form for emailing the Member. 

3. Please send them a message urging them to sign on to this letter. We’ve included a template below, feel free to use this, customize it, or send your own.

 “My name is __(enter name)_ and I live in ___(city)__ in your District. I am contacting you to ask that you sign on to a letter to  HHS Secretary Sebelius to request clear language that ensures greater access to life-saving care for Americans with eating disorders in the final rules for the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 (aka “parity”). This letter is being sent by Representatives Hank Johnson, Alcee Hastings, and Ted Deutch. Unfortunately even since the passage of federal parity, many people with eating disorders are being denied coverage in violation of the parity law.

I care about this issue because ________. 

Please sign on to this important letter by contacting Scott Goldstein in Representative Johnson's office or Larry Zaragoza in Representative Hastings' office or Joel Richard in Representative Deutch's office. I look forward to hearing back from you. Thank you.”

Thank you for your help!

Senate Letter to Secretary Sebelius Urging Parity for Eating Disorders Sent!

We at the EDC are very excited about a letter Senator Tammy Baldwin (D-WI) is sending to Health and Human Services Secretary Kathleen Sebelius.  Thank you so much to all of you who reached out to your Senator!

The Mental Health Parity and Addiction Equity Act passed in 2008 (MHPAEA). Nearly five years later we are still waiting for HHS to promulgate the final regulations.  Very simply, the Parity regulations will explain how the HHS will interpret the law.  MHPAEA regulations are long overdue, and because they are so overdue we’ve seen a lot of confusion around the interpretation of parity law. See our previous post here.

In addition to those of you who wrote letters, during our most recent lobby day we worked very hard to generate support for this letter, and constituents urged their Senators to sign on to the letter. We are very proud to announce that Senator Baldwin’s letter is also signed by Senators Tom Harkin (D-IA), Jay Rockefeller (D-WV), Al Franken (D-MN), Amy Klobachar (D-MN), Kirsten Gillibrand (D-NY), Frank Lautenberg (D-NJ), Ron Wyden (D-OR), Richard Blumenthal (D-CT), and Elizabeth Warren (D-MA).

This letter is so important because it not only urges HHS to promulgate the rules on Parity, but goes further requesting that HHS (1) clarify that denying coverage for residential inpatient treatment for eating disorders because there is not a ‘medical analogy’ is a violation of existing parity law and (2) applying limits to scope of treatment for eating disorders more restrictively than medical/surgical benefits is a violation of parity.  This clarity in the final rule would prevent many people suffering with an eating disorder.

Thank you all for your support—together we can achieve parity for eating disorders! We are making progress because of you! 

To see a copy of the letter see Senator Baldwin’s facebook  page here.

A Successful Lobby Day!

Thank you to all who came out for our lobby day last week. It was a wonderful success! We had over 100 participants who took the message of the FREED Act and parity for eating disorders coverage to the Hill. 

The day started with message training, which really helped all of the teams prepare for the meetings. Then off we went to the halls of Congress armed with a powerful message, that the federal government has the power to dramatically reduce eating disorders, and to ensure that people with eating disorders receive the treatment they need. 

The Congressional briefing at midday was wonderful. Representative Ted Deutch of Florida, gave a powerful speech. We are so grateful and excited that he has agreed to sponsor the FREED Act and be a champion for those with eating disorders. He is a powerful ally in the fight to end eating disorders. A special thanks to all of our speakers: Johanna Kandel, Jillian Lampert, Holly Merbaum, Kitty Westin, Jaye Azoff, and Jeanine Cogan. 

Our teams met with House and Senate offices throughout the day. Because of these meetings, we were able to educate offices on eating disorders, gain new sponsors for FREED, forge new partnerships, and build relationships with Congress.  

   

In addition to meeting with our representatives in person, many of you helped with our virtual lobby day campaign. This was an amazing support; many Members were already familiar with the FREED Act, because of what you did. 

But the work doesn’t end with lobby day. In fact, in many ways, we are working even harder on the Hill to capitalize on the important work done last week.  EDC will continue to advocate and educate on the Hill, we will be following up with the Congressional offices, building on the powerful foundation laid during lobby day. We will continue working to get FREED passed to get parity for eating disorders coverage. 

Let’s keep the momentum going and please save the date-- our Fall lobby day is September 18, let’s make that one even better!

To see more pictures of Lobby day, check out our facebook page https://www.facebook.com/EatingDisordersCoalition

Become A Virtual Lobbyist!

Are you unable to join the Eating Disorders Coalition for our Spring Lobby Day on Wednesday, but still want to help? Please consider helping us by urging your Members of Congress to cosponsor the FREED Act. Your voice makes a difference! To contact your Representative:

1. Go to www.house.gov and enter your zip code in the box that says ‘Find My Representative’ 

2. Once you do that you’ll see your Member's information come up, click on the little envelope icon under your Member’s name to contact them. If for some reason this doesn’t work, go directly to their page and click on the ‘Contact Me’ link. That should take you to a web form for emailing the Member. 

3. Please send them a message urging their support for the FREED Act. We’ve included a template below, feel free to use this, customize this, or send your own.

 “My name is __(enter name)_ and I live in ___(city)__ in your District. I am contacting you to ask that you  co-sponsor the Federal Response to Eliminate Eating Disorders (FREED Act) of 2013, which will be introduced this week by Representative Ted Deutch of Florida. This bill will increase research into eating disorders, increase education and prevention of eating disorders, and ensure that people with eating disorders receive the care that they need. I care about this issue because ________.  Please support this crucial piece of legislation.  I look forward to hearing back from you. Thank you.”

Thank you for your help!

Mental Health Bill Passed out of HELP Committee

Yesterday, the Senate Health, Education, Labor and Pensions Committee marked up a major mental health bill, S. 689. The bill is an excellent step forward for mental health issues. We are glad to see this reported out of Committee and hope Congress passes it soon. The bill does a number of things including:

• Expands the use of positive behavioral interventions and early intervening services in schools to reduce over-identification of individuals with disabilities and reduce disciplinary problems in schools.
• Allows funds from the Elementary and Secondary Education Act of 1965 to be used for school-wide intervention services and to create or update school emergency management plans.
•  Reauthorizes the Youth Suicide Early Intervention and Prevention Strategies grants to states and tribes (about $30 million to be appropriated for each fiscal year from 2014 to 2018).
• Reauthorizes the Mental Health and Substance Use Disorder Services on Campuses grant programs;  and allow for the education of students, families, faculty and staff to increase awareness and training to respond to students with mental health and substance use disorders (about $5 million to be appropriated for each fiscal year from 2014 to 2018).
• Reauthorizes grants to states, political subdivisions of states, American Indian tribes, tribal organizations and nonprofit private entities to train teachers, school personnel and emergency services personnel to recognize the signs and symptoms of mental illness (about $20 million to be appropriated for each fiscal year from 2014 to 2018).
•   Reauthorizes the National Child Traumatic Stress Initiative, which supports a national network of child trauma centers (about $46 million to be appropriated for each fiscal year from 2014 to 2018).
•  Requires a Government Accountability Office (GAO) report on the federal requirements impacting access to mental health and substance use disorder treatment related to integration with primary care, administrative and regulatory issues, quality measurement and accountability and data sharing.
•  Directs the Substance Abuse and Mental Health Services Administration to advance the education and awareness of providers, patients and other stakeholders regarding FDA-approved products to treat opioid use disorders.
• Requires a GAO report on the utilization of mental health services for children.
• Requires a GAO study on the status of the implementation of the recommendations outlined in a report to President George W. Bush in 2007 by the secretaries of Health and Human Services and Education and the attorney general regarding the Virginia Tech shootings.

While this bill does not address eating disorders specifically (or any other specific illness or disease) it is a very important piece of legislation. It addresses many critical areas of mental health care and we applaud the HELP Committee for passing it and urge the Senate to take it up quickly and pass it. The EDC is closely monitoring and actively working to make sure this bill passes.

*Summary from Congressional Quarterly