Wednesday, April 24, 2013

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

Monday, April 15, 2013

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 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!

Thursday, April 11, 2013

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

Wednesday, April 3, 2013

Is Parity Failing You?

Have you been denied coverage for your eating disorders treatment in the last five years that may be a violation of the parity law?  If so, then we need to hear from you.  The Mental Health Parity and Addiction Equity Act of 2008 requires insurance companies to ensure that co-pays, deductibles and treatment limitations (such as visit limits) applicable to mental health or substance use disorder benefits are no more restrictive than the requirements or limitations applied to medical/surgical benefits. Yet we often hear from people that were denied equal coverage by their insurance companies. Now we need to hear from you.

Have you experienced any of these common problems?

1.  Insurance companies deny treatment as they do not consider the care as "medically necessary".  They use their own definition of medical necessity, versus the standard of care and best practices in the treating community.

2. Provider reimbursement rates are too low, so the provider has to offer services out-of-network and the patient has to pay a higher out of pocket for their treatment.

3. The insurance company has labeled my treatments as “experimental” or "experiential" and therefore are refusing to pay for those treatments, leaving the patient to pay 100% out of pocket, or go without.

4. The insurance company says that my plan does not cover residential treatment or intensive outpatient care.

5. The insurance company says that my plan does not cover inpatient or residential treatment unless it is provided in an acute care hospital, but most of the treatment providers are non-hospital based facilities (e.g. a residential care facility specific for eating disorders treatment).

6. The insurance company says that they do not authorize any inpatient treatment at all for my anorexia, bulimia or other eating disorder, and that I must be treated only on an outpatient basis.  

7. I have requested from my insurance company the reason why they have denied my care and they will either not respond to my requests for further information, or they refuse to tell me what they do for medical and surgical care, or they refer me to a website that I cannot discern any information from.

8. Outpatient sessions are being limited by utilization review (also known as medical necessity review) and this is not being done for medical and surgical conditions.

9.  Insurance companies deny patients treatment (or tell them up front that their treatment isn't a covered benefit) because eating disorders are not a biologically based or serious mental illness (BBMI and SMI).

10.  Insurance companies deny people treatment because it is considered "educational services".

11. Any other reason you were denied treatment for your eating disorder in a way that is more restrictive than medical/surgical coverage (e.g. visit limits).

What You Can Do?
If you were denied coverage for any of the 11 reasons listed above. Please let us know right away by emailing Melanie Morris at If you have your denial letter please attach it. We’ll help you use it to let Congress and the Administration know that Parity for eating disorders coverage must be enforced and that any regulations should explicitly state this.

What is Next?
After a law passes, the Administration promulgates regulations (just a fancy way of saying interprets the law and gives some guidance on how it should be interpreted by the insurance companies). However the Administration has yet to put out the final regulations on Parity—it has been four years!!! We need to ensure that when these regulations come out they give strong guidance to the insurance companies on how eating disorders should be covered at parity.