Eating Disorders Coalition News and Information

FREED Act Introduced!

2013-05-23T12:58:00.000-07:00

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

2013-05-18T16:46:00.001-07:00

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

2013-05-14T17:33:00.000-07:00

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. 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!

2013-05-09T10:54:00.003-07:00

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!

2013-04-24T09:50:00.000-07:00

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!

2013-04-15T12:28:00.000-07:00

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’

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

2013-04-11T10:20:00.001-07:00

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

Is Parity Failing You?

2013-04-03T10:38:00.001-07:00

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 mmorris@eatingdisorderscoalition.org. 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.

Final Rule for the Exchanges Issued

2013-03-14T11:35:00.000-07:00

The EDC continues to both monitor and influence the implementation of the Affordable Care Act. On February 20, 2013, the Administration offered the Final Rule for the Exchanges. Here is our summary of this rule.

The Affordable Care Act (ACA) requires that all of plans offer a core of benefits, known as the EHB. HHS has issued a final rule on the Essential Health Benefits (EHB’s)--see the full regulation here. The EHB’s must include services in:

Ambulatory patient services
Emergency services
Hospitalization
Maternity and newborn care
Mental health and substance use disorder services, including behavioral health treatment
Prescription drugs
Rehabilitative and habilitative services and devices
Laboratory services
Preventive and wellness services and chronic disease management
Pediatric services, including oral and vision care

Benchmark Plans

Because of the provision in the ACA that requires the EHBs to be equal in scope to benefits offered by a typical employer plan, the final rule states that all plans offer benefits equal to the benefits offered by the benchmark plan. They must cover mental health services at parity. However, the plans can substitute benefits within a category (excluding prescription drug benefits) as long as the substitution is actuarially equivalent. The final rule defines EHB based on a state-specific benchmark plan. States can select a benchmark plan from among several options, including the largest small group private health insurance plan by enrollment in the state.

The benchmark plan options include: (1) the largest plan by enrollment in any of the three largest products by enrollment in the state’s small group market; (2) any of the largest three state employee health benefit plans options by enrollment; (3) any of the largest three national Federal Employees Health Benefits Program (FEHBP) plan options by enrollment; or (4) the HMO plan with the largest insured commercial non-Medicaid enrollment in the state.

Twenty-six states selected their own benchmark and the final rule states that if the remaining states that do not make a selection, HHS will select the largest plan by enrollment in the largest product by enrollment in the state’s small group market as the default base-benchmark plan. The selected benchmark plans are already finalized for benefit year 2014.

The final rule provides guidance on how the state will supplement the benchmark if the plan is missing any of the ten categories of benefits. The provisions for supplementing are the base-benchmark plan where it does not adequately cover any of the ten categories of EHB. Plans can not include discriminatory benefit designs and must ensure a balance among EHB categories

Parity:

The statute requires that all plans covering EHB offer mental health and substance abuse

service benefits, including behavioral health treatment and services. Coverage of EHB must provide parity in treatment limitations between medical and surgical benefits and the mental health and substance abuse benefits required to be covered as EHB in both the individual and small group markets.

Approximately ninety-five percent of those with coverage through the three largest small group products in each state had mental health and substance abuse benefits. According to the final rule, “a study of implementation of parity in the FEHBP plans as well as research into state-passed mental health parity laws have shown little or no increase in utilization of mental health services, but found that parity reduced out-of-pocket spending among those who used mental health and substance abuse services.”

Next Steps:

As the ACA is implemented and as the Exchanges go live in 2014, it is essential that we ensure that all mental health services are covered at parity in each of the states and that all levels of care are covered. We need to continue to advocate at both a state and federal level to ensure people with eating disorders are able to receive the treatment and care that they both need and deserve.

Please see our benchmark survey to better understand the coverage of eating disorders in the benchmark plans. To understand how the Exchanges are being implemented in your state, see this interactive map from the Kaiser Family Foundation.

EDC Survey of Benchmark Plans

2013-03-13T12:28:00.001-07:00

See the full document here.

Beginning on January 1 2014, the Affordable Care Act (ACA) requires that all (non-grandfathered) individual and small group health insurance plans sold in a state cover certain essential health benefits (EHB’s). In January 2013, the Eating Disorders Coalition (EDC) surveyed all of fifty states and the District of Columbia’s proposed benchmark plans and discovered a wide disparity in the anticipated mental health service coverage between states.

Executive Summary

There exists a wide disparity in anticipated mental health and substance abuse service coverage between states, particularly as it relates to residential care and eating disorder care. This troubling disparity is of great concern for people struggling with eating disorders and other mental health and substance abuse issues across the country.

According to our survey, twenty-seven of the benchmark plans severely limit mental health services. Seventeen of these plans have day limits on mental health services and nine states have exclusions for residential services. In some cases, the states with limits on mental health do not have the same limits on substance abuse services; in other cases limits are extreme for both mental health and substance abuse. Given that similar limits are not seen in medical services, the disparity on quantitative day limits and unequal exclusionary status should not be allowed under Mental Health Parity.

In contrast, our review indicates that twenty-four states have strong mental health coverage, without non-equitable service limits. Vermont has the strongest coverage for eating disorders and Connecticut, Idaho, and Maine also having very strong plans.

With half of the states including equitable coverage for mental health and substance abuse services, there is strong evidence that plans can and do include equitable and inclusive treatment for mental health and substance abuse. There is a pressing need for the other half of the nation to provide for inclusive coverage of these illnesses. As the benchmark plans are implemented, it is imperative that states offer equitable and adequate access to care for people suffering with mental health conditions, including eating disorders. It is also imperative that all Benchmark plans follow Mental Health Parity. We urge advocates to monitor and influence the implementation in their states, specifics for each state can be found at http://healthreform.kff.org/state-exchange-profiles-page.aspx.

Download the entire document here.

A New Eating Disorders RFA!!!

2013-03-07T13:37:00.000-08:00

As you may remember last summer the EDC worked to ensure that the Senate Appropriations Committee agreed to FY 2013 funding for federally financed health research. The Bill contained a congressional directive "urging the National Institute of Health (NIH) to expand, intensify, and coordinate its research on eating disorders and to examine the possibility of creating collaborative consortia on eating disorders research".

Yesterday, we saw the first result of that language, a Request for Application (RFA) was released by NIH. See here for the text of the RFA.

Join Us for Lobby Day!

2013-02-28T04:39:00.002-08:00

Registration is now open for our Spring Lobby Day, April 17 in Washington, DC. The registration and all relevant info is available here. See you in April!

Melanie Morris Joins EDC Team!

2013-02-27T05:23:00.001-08:00

It's National Eating Disorders Awareness week, and we're recognizing this by expanding our team!

FOR IMMEDIATE RELEASE

Contact: Melanie Morris

(202) 543-9570

February 27, 2013

The Eating Disorder Coalition Hires Melanie Morris

as Communications and Policy Consultant

The Eating Disorder Coalition, the federal advocacy organization for eating disorders, is pleased to welcome Melanie J. Morris as Communications and Policy Consultant. Ms. Morris brings nearly a decade of health policy experience having previously served as Senior Director at Simon & Co., a boutique health policy firm, and as Director at Jefferson Consulting Group a government relations and federal business development firm.

Jeanine Cogan, Policy Director said, “We are very excited that Ms. Morris is joining our team at this critical point in the implementation of the Affordable Care Act. Her expertise is an asset as we continue work with Congress and federal agencies to ensure that people with eating disorders receive the care they need.”

The Eating Disorder Coalition is a non-profit policy and advocacy organization for persons with eating disorders located in Washington, DC. For more information, visit www.eatingdisorderscoalition.org.

Just released today! An issue brief from the Office of Assistant Secretary for Planning and Evaluation (ASPE)

2013-02-20T09:46:00.002-08:00

ASPE ISSUE BRIEF

Affordable Care Act Expands Mental Health and Substance Use Disorder Benefits and Federal Parity Protections for 62 Million Americans

February 20, 2013

By: Kirsten Beronio, Rosa Po, Laura Skopec, Sherry Glied

Abstract

The Affordable Care Act builds on the Mental Health Parity and Addiction Equity Act of 2008 to extend federal parity protections to 62 million Americans. The parity law aims to ensure that when coverage for mental health and substance use conditions is provided, it is generally comparable to coverage for medical and surgical care. The Affordable Care Act builds on the parity law by requiring coverage of mental health and substance use disorder benefits for millions of Americans in the individual and small group markets who currently lack these benefits, and expanding parity requirements to apply to millions of Americans whose coverage did not previously comply with those requirements.

Read full report: http://aspe.hhs.gov/health/reports/2013/mental/rb_mental.cfm

Senator Harkin holds hearing on mental health after the Newtown shootings on Capitol Hill.

2013-01-25T08:30:00.000-08:00

This is an important moment in history where the nation focuses on the important of addressing mental health through smart and prudent policies.

The EDC is particularly grateful for Senator Patty Murray's strong insistence that the final rule for mental health parity needs to be released no later than April this year!

Here are a few quotes we thought was worth highlighting:
"It is important we don't stigmatize mental health." Senator Franken

"Only 1 in 5 children with mental health issues get treated." Senator Franken

"It is absolutely vital that we detect earlier and intervene earlier with something we know is effective." Tom Insel, Director of NIMH

"You can't have mental health without mental health practitioners. . . I went into graduate school on an NIH grant when this 1963 bill was signed for mental health community centers . . . because of that I was able to go to graduate school and get a master's degree in social work . . . the consequences of well trained people and what they then produce in our society I know is important. Senator Mikulski

"I would agree that we need more practitioners." Pamela Hyde, Administrator, SAMHSA

"We have to make sure that mental health is available to all people regardless of their income all over this country." Senator Sanders

To read the testimony of witnesses see the below pdf files. You can also view the video at http://www.help.senate.gov/hearings/hearing/?id=b2048a10-5056-a032-529c-340d7ae5f237

Witnesses

Panel I

• Ms. Pamela Hyde, Administrator, Substance Abuse and Mental Health Services Administration, Rockville, MD
Download File

• Dr. Thomas Insel, Director, National Institute of Mental Health at the National Institutes of Health, Bethesda, MD
Download File

Panel II

• Michael Hogan Ph.D., Former Commissioner, New York State Office of Mental Health, and Chairman, President’s New Freedom Commission on Mental Health, Delmar, NY
Download File

• Robert Vero, Ed.D., Chief Executive Officer, Centerstone of Tennessee, Nashville, TN
Download File

• George DelGrosso, M.A., Executive Director, Colorado Behavioral Health Council, Denver, CO
Download File

• Larry Fricks, Senior Consultant, National Council for Behavioral Health, Cleveland, GA
Download File

2013-01-17T13:58:00.002-08:00

EDC applauds the President for addressing mental health through his commitment to finalizing the parity regulations and attention to essential health benefits.

Obama gun plan calls for long-awaited rules on mental health
By Sam Baker - 01/16/13 12:31 PM ET
From Healthwatch - The Hill's Healthcare Blog

President Obama's plan to reduce gun violence calls for long-awaited rules requiring insurance companies to cover mental health services.

Obama said his administration would finalize rules on mental health parity, the requiring of mental healthcare to be covered the same way as physical healthcare. The regulations have languished since 2008, and Senate Democrats had called on Obama to push the rules forward as part of his gun-control recommendations.

Obama also said his administration would be "issuing guidance making clear that the Affordable Care Act does not prevent doctors from talking to patients about gun safety," amid a host of other healthcare-related actions and recommendations.

The White House plan calls for bolstering access to mental health services in schools and encouraging teachers to intervene early when they believe a student needs counseling.

Obama also directed the Centers for Disease Control and Prevention to study gun violence, despite a congressional order that prohibits the agency from conducting any research that would "advocate or promote gun control."

Obama said that order should not be read as an all-out ban on gun research, and he called on Congress to provide $10 million in funding for the CDC to study gun violence and possible links to violent movies and video games.

THE WHITE HOUSE

Office of the Press Secretary

EMBARGOED UNTIL THE START OF THE PRESIDENT’S REMARKS

January 16, 2013

Gun Violence Reduction Executive Actions
Today, the President is announcing that he and the Administration will:

1. Issue a Presidential Memorandum to require federal agencies to make relevant data available to the federal background check system.
2. Address unnecessary legal barriers, particularly relating to the Health Insurance Portability and Accountability Act, that may prevent states from making information available to the background check system.
3. Improve incentives for states to share information with the background check system.
4. Direct the Attorney General to review categories of individuals prohibited from having a gun to make sure dangerous people are not slipping through the cracks.
5. Propose rulemaking to give law enforcement the ability to run a full background check on an individual before returning a seized gun.
6. Publish a letter from ATF to federally licensed gun dealers providing guidance on how to run background checks for private sellers.
7. Launch a national safe and responsible gun ownership campaign.
8. Review safety standards for gun locks and gun safes (Consumer Product Safety Commission).
9. Issue a Presidential Memorandum to require federal law enforcement to trace guns recovered in criminal investigations.
10. Release a DOJ report analyzing information on lost and stolen guns and make it widely available to law enforcement.
11. Nominate an ATF director.
12. Provide law enforcement, first responders, and school officials with proper training for active shooter situations.
13. Maximize enforcement efforts to prevent gun violence and prosecute gun crime.
14. Issue a Presidential Memorandum directing the Centers for Disease Control to research the causes and prevention of gun violence.
15. Direct the Attorney General to issue a report on the availability and most effective use of new gun safety technologies and challenge the private sector to develop innovative technologies.
16. Clarify that the Affordable Care Act does not prohibit doctors asking their patients about guns in their homes.
17. Release a letter to health care providers clarifying that no federal law prohibits them from reporting threats of violence to law enforcement authorities.
18. Provide incentives for schools to hire school resource officers.
19. Develop model emergency response plans for schools, houses of worship and institutions of higher education.
20. Release a letter to state health officials clarifying the scope of mental health services that Medicaid plans must cover.
21. Finalize regulations clarifying essential health benefits and parity requirements within ACA exchanges.
22. Commit to finalizing mental health parity regulations.
23. Launch a national dialogue led by Secretaries Sebelius and Duncan on mental health.

SAVE THE DATE FOR THE 2013 EDC NATIONAL LOBBY DAYS!

2013-01-14T09:17:00.004-08:00

EDC Spring Lobby Day: Wednesday, April 17, 2013

EDC Fall Lobby Day: Wednesday, September 18, 2013

*Registration will be open for the Spring Lobby Day in early February 2013.

About EDC National Lobby Days:
The EDC brings advocates together twice a year for our National Lobby Days as the most effective way to educate Members of Congress and push for important policy goals like the FREED Act. Join us for an EDC National Lobby Day on Capitol Hill in Washington, DC where your voice makes a difference in the lives of those affected by eating disorders. By addressing eating disorders at the Federal level, you have the opportunity to help everyone impacted by eating disorders. You will learn to tell your story and share your experience in a way that leaves a notable impact on Members of Congress and staff. We need YOU to be part of these efforts. Visit our website for more information: www.eatingdisorderscoalition.org

New EDC survey of the Essential Health Benefits finds wide disparity in anticipated mental health service coverage between states.

2013-01-09T13:54:00.000-08:00

The Eating Disorders Coalition survey of benchmark plans from all 50 states plus District of Columbia shows wide disparity in anticipated mental health and substance abuse service coverage between states, particularly as it relates to residential care and eating disorder care. This disparity is of great concern for people struggling with eating disorders and other mental health and substance abuse issues across the country.

By our review, 27 of the benchmark plans severely limit mental health services, with 9 specifically excluding residential care and a few exclusively limited eating disorder residential treatment. Many of these plans have day limits on mental health services and exclusions for residential services included in a list of completely unrelated items that are typically not included. In many cases, the states with limits on mental health do not have the same limits on Substance Abuse services; in some cases limits are extreme for both mental health and substance abuse.

Given that similar limits are not seen in medical services, it seems that this disparity, both on quantitative day limits and unequal exclusionary status should not be allowed under Mental Health Parity.

In contrast, our review indicates that 24 states have strong mental health coverage, without non-equitable service limits. Many specifically include residential treatment, a few highlight eating disorder treatment inclusion. The states of Maine and Vermont seem to have the strongest coverage for eating disorders, while numerous other states have strong coverage with no stated day limits and no exclusion for residential care.

With ½ of the states including equitable coverage for mental health and substance abuse services, there is strong evidence that plans can and do include equitable and inclusive treatment for mental health and substance abuse. There is a pressing need for the other ½ of the nation to provide for inclusive coverage of these illnesses.

As the nation moves forward with implementing the ACA state by state, it is imperative that attention be paid to equitable and adequate access to care for people suffering with mental health conditions, including eating disorders.

Source for the plans: http://www.statereforum.org/analyses/state-progress-on-essential-health-benefits

Action Alert! Make your voice heard in Washington DC!!!!

2012-12-21T11:55:00.000-08:00

We have until December 26 at 5 pm (EST) to do so!

Support EDC’s efforts to strengthen the affordable care act!

The design of the Essential Health Benefits (EHB) is an important opportunity to address the health needs of more than 14 million Americans suffering from eating disorders. With the passage of the Affordable Care Act there was the inclusion of mental health as a specific benefit that must be covered. The EDC is working hard to make sure eating disorders are incorporated into the EHB. This is an opportunity to lessen the continued and widespread insurance discrimination experienced by people with eating disorders.

We need your voice!

The EDC asks you to support our extensive comments by sending in your comments as well.

Here is how:

1. go to: http://www.regulations.gov/#!submitComment;D=CMS-2012-0142-0001
2. Click "Comment Now" button 
3. Enter your name and other information 
4. Cut and paste below (limited to 2000 characters)
5. Click Submit

Comments: (Note: These are so short and concise due to the 2000 character limitation)

Please incorporate the following recommendations so that people with eating disorders will have better access to treatment.

1. Benefit substitutions should not be a vehicle to exclude or limit needed care for eating disorders.

The proposed rule allows plans substantial flexibility to substitute benefits within the EHB categories. This approach could undermine coverage for enrollees with eating disorders if a plan is able to use its substitution flexibility to exclude eating disorders treatment or eliminate medically necessary components of the continuum of care for these conditions. All States should have robust and detailed EHB packages that ensure full coverage of all medically necessary services across the continuum of care in each of the categories, including the mental health category.

2. Ensure that health insurance plans do not discriminate on the basis of sex in the implementation of the essential health benefits.

According to Section 1557, limits on covered services and condition-based exclusions that disproportionately affect women can be discriminatory. Plans that cover treatment for mental health conditions, but exclude it for eating disorders, including residential care, discriminates against women given that three times as many women as men suffer from these conditions. The Secretary must address this sex discrimination and ensure eating disorders treatment is included in the EHB package.

3. Make out-of-network more affordable

Requirements related to cost-sharing in the proposed rule may expose individuals to high out-of-pocket costs. Since there are not many providers with eating disorders expertise many individuals with eating disorders require access to medical providers and eating disorder specialists, who are not within the plan’s specified network. The Department should create a special rule to ensure out-of-network providers are a viable option for patients that are unable to get the care they need through in-network providers.

Dear EDC Advocate

2012-12-17T13:35:00.000-08:00

I come to my computer with a broken heart. This morning I was sitting in a coffee shop working on efforts promoting the inclusion of eating disorders treatment in health insurance policies – when I joined a conversation with two mothers who were also pastors. Together we cried with the piercing loss of so many beautiful and precious children and adults. These children are our children. Their loss is our loss. We grieve with the parents and families. We weep with the community of Newtown. Today we weep. That is an appropriate and necessary response.

Tomorrow we act! Tomorrow we continue to organize, rally, and advocate. We will change laws, promote policies and work to make sure people with mental illness are respected and given the care, support and treatment they need and deserve.

We owe our action to the innocent children and adults of Newtown. Taking care of one another is not a sign of weakness or indulgence it is a sign of compassion and social responsibility. The people of Newtown deserve our action to find and implement solutions to the social and health dilemmas of our time. The EDC is committed to being part of this solution! We will be on a conference call this week with the broader mental and behavioral health community in Washington DC to find solutions to respond to this tragedy.

Jeanine Cogan, Ph.D
Policy Director
Eating Disorders Coalition

When there is a will there is eventually a way.

2012-12-07T12:20:00.000-08:00

Congresswoman Eshoo's success in passing a cancer bill is the future the EDC envisions for eating disorders legislation. The EDC was responsible for getting key language to expand research on eating disorders at NIH earlier this year. We will be seeking additional opportunities in 2013 to move provisions and goals of the FREED Act forward. We look forward to your participation at our two lobby days, one on April 18th and one September 26th! Stay tuned.

Parity for Behavioral Health Coverage Delayed by Lack of Federal Rules

2012-12-04T13:18:00.001-08:00

By MICHAEL OLLOVE, STATELINE

DEC 02, 2012

This story comes from our partner Stateline, the daily news service of the Pew Center on the States.

Danielle Moles is anorexic, which in her case played out not only in a near-starvation diet but also in obsessive running. She ran during tornados. She ran in temperatures that fell to 20 degrees below zero and froze her ponytail solid. She ran a marathon with a stress fracture in her foot. She ran when she was supposed to be at birthday parties and bridal showers and family vacations. She ran until she literally passed out.

Even with all that exercise, Moles convinced herself it wasn’t enough. She denied herself liquids to punish herself. She purged. She abused laxatives so frequently that she permanently damaged her digestive system and wore the enamel off her teeth. Her body rebelled in other ways as well: She stopped menstruating. She was persistently light-headed and nauseated. She began having seizures. One particularly awful night in 2008, she tried to end it all with a half-bottle of Ativan.

There were more consequences to her destructive behavior. She miscarried. Her marriage fell apart. Her career as a nurse foundered.

Doctors diagnosed Moles, now 32, with anorexia and depression, and prescribed long-term care in a residential psychiatric facility. But Moles’ insurers said she wasn’t covered for such care. About a year ago, her insurer finally agreed to pay for three months in an Illinois residential psychiatric facility. Those three months proved more effective than anything she had tried previously. Eight months after Moles left the facility, her weight had stabilized at 120 pounds—only five pounds less than her doctors recommend—and she hasn’t run in a year.

Moles doesn’t understand why her insurance company resisted paying for the residential care she needed, especially because it would have covered lengthy in-patient care to recover from a stroke or heart attack. “I don’t understand why mental health isn’t as recognized as much as a physical condition,” she says. “This is just as debilitating.”

A Law but No Rules

Congress recognized that equivalence in 2008 when it passed the Mental Health Parity and Addiction Act, which requires insurers to cover mental illness and substance abuse treatment on an equal basis with physical ailments. The law, which passed with substantial bipartisan support, was supposed to eliminate two-tiered systems for co-pays, deductibles or treatment limitations.

The Obama administration's Affordable Care Act will vastly extend the reach of the 2008 law. The older law does not require health insurance plans to offer behavioral health coverage, although if they do it must be on par with benefits provided for medical and surgical care. But the ACA does require that all health plans sold on the soon-to-be-created state health insurance exchanges eventually offer mental health coverage. Those plans, then, will all be required to observe the federal parity act.

The problem, behavioral health advocates say, is that more than four years after President George W. Bush signed the parity bill into law, the Obama administration has yet to complete the federal rules that would enable states to enforce it.

As a result, behavioral health may actually have fallen further behind since passage of the law. In May, the U.S. Government Accountability Office released a report showing that health insurance plans have actually increased the number of exclusions for mental health and addiction treatments since the law was enacted. In 2010 and 2011, for example, 15 percent of the plans surveyed by the GAO were excluding residential mental health, a significant increase from 2008.

"Hundreds of thousands of Americans are being denied their rights under the federal parity law," says James Ramstad, a former Republican congressman who originally introduced the House version of the bill in 1996 at the request of his friend and fellow Minnesotan, the late Democratic Senator Paul Wellstone, whose name is memorialized on the law. Wellstone was killed in a plane crash in 2002. "It took 12 years to pass that parity act and four years later, we still have no rules and therefore no enforcement," says Ramstad. "It’s unconscionable."

Ramstad and another former congressman, Patrick Kennedy, whose father, Sen. Edward Kennedy, also championed the law after Wellstone’s death, have been convening meetings across the country in which experts and patients -- some of them of them soldiers returning from war in Iraq or Afghanistan -- testify in support of the law. The motive of the meetings, Kennedy says, is to publicize the parity law and prod the Obama Administration to act.

"Right now, there are no regulations telling the insurance companies how to comply," says Kennedy. "A law without rules isn’t worth the paper it’s written on, and what that means is that insurance companies can continue to do business as usual."

Victoria Veltri, Connecticut’s Health Advocate, agrees. She says pushing insurers to observe parity is difficult without the specific requirements federal rules would spell out. "It makes it very difficult to make arguments about whether the criteria the insurers are using pass muster or not."

The U.S. Department of Health and Human Services had not responded to multiple requests for comment at the time this article was published.

Some Progress

Some states, including Connecticut, Maryland, Maine, Oregon, and Vermont, have enacted strong laws to beef up coverage of behavioral health, but those statutes do not cover all health insurance plans, including those issued by the many large employers which insure their own workers.

States that refuse to enforce the parity act after HHS releases the rules likely will face lawsuits from patients, as well as pressure from the Obama administration, which has the authority to enforce the law if the states do not.

Even without the final rules, the broad outlines of what parity will look like are relatively clear: Insurance companies will not be permitted to impose more restrictive spending limits on mental health or addiction benefits than they impose on medical and surgical benefits. They will not be able to limit the frequency or duration of mental health treatment more severely than they do for other forms of care, nor will they be allowed separate deductibles or more restrictive authorization rules.

Andrew Sperling of the National Alliance on Mental Illness says that even without final federal rules, insurance companies generally have eliminated separate deductibles and scrapped unequal spending limits. But Sperling and other advocates say insurers continue to disallow mental health and addiction treatments in non-hospital based facilities, and also to exclude types and levels of treatment for behavioral patients, while covering a full range of treatments for medical patients. They also say that behavioral health patients are often subject to reviews and criteria that are not required of patients on the medical and surgical side.

Fail First

Substance abuse treatment advocates are particularly troubled by the requirement that people with addictions fail at lower levels of care before they are approved for more intensive treatments. They say the "fail first" requirement would never be tolerated for medical and surgical patients.

"It’s a classic example of discrimination and a moral overtone that is a remnant of the past that still lingers," says Beth Middlebrook, legal coordinator of Watershed Addiction Treatment Programs. "It comes from the belief that the alcoholic is a bad person as opposed to a person with a bad disease."

Susan McClanahan, Danielle Moles' psychologist, is convinced that Danielle has paid a heavy price because of the unequal treatment accorded behavioral health patients.

"If she had been able to have a residential stay earlier," says McClanahan, "the course of her illness would not have been so long."

There might have been other benefits as well. Had Moles gotten the help she needed at the beginning, her treatment might have cost her insurers roughly $80,000 instead of the $500,000 to $750,000 she estimates they eventually shelled out. (Moles estimates she has paid $150,000 out of her own pocket.) She also might have avoided the physical ailments she has today that resulted from her mental illness, including seizures and chronic pain in her back and knees.

"I’m terrified that I won’t have the life of normalcy I long for," she says. "I want to have a relationship again. I want to have children. I want a profession and career that I love."

She can't help wondering whether she’d already be living that life it if she had gotten the help she needed when she needed it.

Advocates Push for More Research Into Eating Disorders

2012-11-30T08:43:00.000-08:00

CQ HEALTHBEAT NEWS
Nov. 29, 2012 – 4:17 p.m.
By Jane Norman, CQ HealthBeat Associate Editor

Medical experts, parents and researchers Thursday called for more federal attention to research, education and treatment for eating disorders, a mental illness that can lead to medical complications and even death.

In a briefing at the Capitol, members of the Eating Disorders Coalition and F.E.A.S.T., another advocacy group, said that such chronic illnesses as anorexia, bulimia and binge eating are widely misunderstood and too often blamed on parents or the patients themselves. “These are very, very serious, very dangerous disorders,” said Mark Chavez, chief of the eating disorders program at the National Institute of Mental Health.

The disorders — like many mental illnesses — also carry a stigma, advocates said. “We have been ashamed and we have stood back,” said Laura Collins, executive director of F.E.A.S.T. “We know patients do not choose to be ill. Families do not cause eating disorders and I am sorry I even have to say that.”

Advocates said that at least 11 million Americans have an eating disorder and it’s the third most common chronic illness among adolescents. The disorders, characterized by eating very small amounts of food or very large amounts, often are thought to be genetic in origin. “Severe distress or concern about body weight or shape may also characterize an eating disorder,” says NIMH material on the illness.

According to NIMH, the disorders frequently appear during childhood or the teens. And Chavez said patients with the disorders tend to have both psychiatric and medical conditions. Depression and anxiety may co-exist with cardiac problems, brain damage and osteoporosis, all particularly dangerous in growing children and teens. And insurance coverage for treatment is often skimpy or non-existent, parents said.

One problem is that there’s no clear answer as to how or why disorders are triggered, said Julie O’Toole, a physician who runs a treatment clinic. That makes prevention difficult. “We need to focus like a laser on early recognition,” said O’Toole.

Parent Amy Snyder talked about her 7-year-old daughter, who told her mother she heard a “mean voice” in her head that instructed her to not eat, which is common among patients. “Essentially the child is afraid to eat. They’re afraid of food,” said Snyder, who found effective treatment following an initial misdiagnosis by a pediatrician of her daughter’s symptoms of dizziness, itchy skin and constipation.

The briefing for congressional staff was sponsored by Senate Health, Education, Labor and Pensions Committee Chairman Tom Harkin, D-Iowa, who has sponsored legislation (S 481) on eating disorders that has not yet been taken up by the panel. He is expected to re-introduced it next year. A companion bill (HR 1448) has been introduced in the House by Rep. Tammy Baldwin, D-Wis., who was elected to the Senate earlier this month.

Under the measures, federal research would be funded that would determine the prevalence of all eating disorders as well as the mortality rates and the associated health care costs. There would also be a study of mandatory BMI reporting in schools, a grant program for training and educating professionals and public service announcements on eating disorders.

The House bill would require that any health insurer that provides health coverage for physical illnesses must provide coverage for eating disorders, and that insurers are required to follow standards of care for patients with eating disorders as laid out by the American Psychiatric Association. Both the House and Senate bills would require eating disorder treatments be covered by Medicaid, and that children enrolled in Medicaid be screened for eating disorders.

Advocates acknowledged it’s an uphill fight to find new funding in a tough budget environment but said they will persist. “This is a pretty young bill,” said Jeanine Cogan, policy director of the Eating Disorders Coalition, noting it was first introduced in the House in 2009 and in the Senate in 2010.

Jane Norman can be reached at jnorman@cq.com.

EDC Blog named one of the best Eating Disorder Blogs of 2012!

2012-11-14T09:14:00.000-08:00

We are thrilled to be included among the best 18 Eating Disorder Blogs of 2012 from healthline.com

Click here to read more

Action Alert: Parity Sign On Letter

2012-10-02T13:54:00.001-07:00

Dear EDC Advocate:

As we approach the fourth anniversary of the enactment of the Mental Health Parity and Addiction Equity Act (MHPAEA) on October 3, 2008, we are asking for your help to make the purpose of the federal parity law a reality.

Although MHPAEA was enacted nearly four years ago, a final rule implementing the law has not yet been issued. Without a final rule from the Administration, many individuals seeking care for eating disorders, mental health and addictive disorders have been unable to access the health care services they need.

Please ask your Member of Congress to sign the letter to the Administration asking them to issue a final parity rule and provide an update on progress made thus far in implementing the law. The EDC is working in collaboration with the mental health community on this effort. Go to the following link offered by one of our collaborators Faces and Voices of Recovery to act now!

http://org2.democracyinaction.org/o/7158/p/dia/action/public/?action_KEY=11753

Members of Congress should contact Melissa Gierach with Rep. Sullivan (R-OK) or Anne Sokolov with Rep. Ryan (D-OH) to sign on to the letter.

The deadline for Members of Congress to sign on is October 5.

Members of Congress who have signed on thus far include:
• Tonko (D-NY)
• Kaptur (D-OH)
• Bono Mack (R-CA)
• Moran (D-VA)
• Brown (D-FL)
• Quigley (D-IL)
• Lewis (D-GA)
• Holden (D-PA)
• McGovern (D-MA)

Thank you for adding your voice to this effort of making parity a reality!