Happy New Year!

 

As we wrap up 2013, we want to reflect on some of the highlights for us throughout the year. 2013  was a very successful year for the EDC, and we are particularly proud of these key accomplishments:

• The EDC urged Senators and Members of Congress to send Senate and House letters to HHS Secretary Kathleen Sebelius urging parity for eating disorders. We are thrilled that HHS clarified the regulations in their final rule in a way that should increase access to care for people with eating disorders (such as clarifying equity in coverage for residential treatment).
• A new Request for Applications (RFA) was released in March as a result of EDC’s success in securing report language in the FY2013 Health and Human Services Appropriations bill.
• The EDC conducted a comprehensive survey of the Benchmark plans to be offered through the State Exchanges, and how eating disorders would be covered in each of the 50 states.
• We worked with House Champions to get the FREED Act introduced with 15 original cosponsors.
• We hosted two successful Lobby Days, including our most widely attended lobby day in EDC history. Both lobby days were supported with a virtual lobby day, and the advocacy events were live tweeted.
• We launched a state leader initiative to assist in the implementation of the state exchanges and improve our grassroots campaigns.
• We regularly meet with House and Senate staff on a variety of legislative priorities and advocate for the advance of federal eating disorders policy including:  FREED and the Mental Illness Awareness and   Prevention Act (S.689).
• We participated in a variety of coalition efforts including: supported Binge Eating Disorder Awareness Week with a comprehensive social media strategy, and participated in the efforts led by  BEDA and BingeBehavior.com to positively influence Michelle Obama’s Let’s Move campaign
• We continued our goal of meeting with all 535 Congressional offices each year.

We hope 2013 has been a great year for you! We are looking forward to 2014, and are optimistic that the EDC will be able to accomplish even more in the coming year. Thank you for all of your support this past year.

 

Murphy Introduces House Mental Health Bill

Rep. Tim Murphy (R-PA), a former practicing psychologist and Chairman of Energy and Commerce’s Subcommittee on Oversight and Investigations, has introduced a major mental health bill, aimed at substantial reforms based on the results of an investigation done by his committee earlier this year.

Rep. Murphy’s bill, “The Helping Families In Mental Health Crisis Act” attempts to overhaul significant portions of the mental health system, by focusing programs and resources on psychiatric care for patients and their families. Support from the mental health community on this bill is split, we’ll go over some of the significant pieces of this bill and point of some of the points of support and controversy.

Rep. Murphy’s bill would create an Assistant Secretary for Mental Health and Substance Use Disorders within the Department of Health and Human Services (HHS), would raise visibility of eating disorders, and streamline how mental health issues are dealt with at HHS. While some groups see this as an opportunity to raise the profile of mental health disorders at HHS and streamline oversight, others are concerned that it would dismantle and override SAMHSA and turn back some of the work SAMHSA has done on this issue.

Some of the more controversial provisions include: altering the Health Information and Portability and Accountability Act (HIPAA) privacy rules and mandatory inpatient treatment. The HIPAA alterations would allow parents and caregivers to access information about their loved ones. Some groups, argue that the restriction of information to parents and caregivers have hindered parents’ ability to get treatment for their children, while privacy advocates, find the distribution of medical information without consent egregious. The most controversial provisions includes the establishment of a grant program to expand involuntary outpatient commitment, under which someone with a serious mental illness is court-mandated to follow a specific treatment plan, usually requiring medication.

We will continue to monitor this bill as it progresses.

A more detailed summary of the major points of the bill includes*:

 

• Creates an Assistant Secretary for Mental Health and Substance Use Disorders within the Department of Health and Human Services to coordinate federal government programs and ensure that recipients of the community mental health services block grant apply evidence-based models of care developed by the National Institute of Mental Health.
• Alters the Health Information Portability and Accountability Act (HIPAA) privacy rules and the Family Educational Rights and Privacy Act so physicians and mental health professionals may provide information to parents and caregivers about a loved one who is in an acute mental health crisis to protect their health, safety, and well-being.
• Increases access to acute care psychiatric beds for the most critical patients.
• Court-ordered ‘Assisted Outpatient Treatment,’
• Tele-psychiatry to link pediatricians and primary care physicians with psychiatrists and psychologists in areas where patients do not have access to mental health professionals.
• Protects certain classes of drugs commonly used to treat mental illness so physicians have prescribe the right medication for those on Medicare and Medicaid similar to the protected classes for persons with epilepsy and cancer.
• Authorizes the BRAIN research initiative at the National Institute of Mental Health and encourages the agency to undertake additional research projects on serious mental illness and self- or other-directed violence.
• Applies the standards for a new class of Federally Qualified Community Behavioral Health Clinics (FQCBHC), requiring them to provide a range of mental health and primary care services.
• Reauthorizes mental health courts and requires the Department of Justice to collect more data on interactions between the police and the mentally ill. The bill also authorizes Byrne Justice Assistance Grants (JAG) to be used for mental health training of law enforcement and corrections officers
• The Department of Education, working with mental health stakeholders, will undertake a national campaign aimed at reducing the stigma of severe mental illness in schools. The bill also reauthorizes the Garrett Lee Smith suicide prevention program.
• Extends the health information technology incentive program to mental health providers so they can communicate and work with primary care clinicians.
• Eliminates federal legal barriers under the Federal Tort Claims Act preventing physician volunteerism at community mental health clinics and federally-qualified health centers.
• Emphasizes evidence-based treatments, sunsets unauthorized programs, and strengthens congressional oversight of all federal behavioral health grants.

* Taken from the full summary of the investigation and results available at: http://murphy.house.gov/uploads/summary.pdf

5 Reasons the EDC is Thankful this Year

The EDC has so many reasons to be thankful. We’ve achieved so many wonderful things this year. We hope you spend today celebrating your thankfulness for the good things in your life. We’ve decided to share our top five reasons we’re thankful this Thanksgiving, and we hope they’ll encourage you as well.  

1. We held our most widely attended lobby day in April, and another incredibly successful lobby day in September. (click to read more)

2. The FREED Act was introduced in May. (click to read more)

3. Favorable Parity Regulations issued in November. (click here to read more)

4. Our Members! The EDC Coalition Members are the most committed, supportive leaders in the eating disorders community.

5. You!  Thank you for supporting our legislative strategy, joining us on lobby day, sharing your stories and contacting your members of Congress.

More on Parity

One of our board members, Katherine Swain McClayton, Manager of Aftercare Planning at the Oliver-Pyatt Centers  has written an excellent blog on the Parity Rules.

Check out her blog here: http://oliverpyattcentersblog.com/parity-rules-determined-significant-on-many-levels/

Parity Final Rule and Eating Disorders

If you’ve read our previous blog, you know that the final rule for MHPAEA came out on Friday. EDC has taken a look at the regulation to determine how we anticipate it will affect eating disorders policy, and what we anticipate the implications to be.

As a reminder, MHPAEA applies only to health plans provided by employers with 50 workers or more, and individual plans purchased through the Exchange. These rules do not apply to people in government health insurance programs such as Medicaid or Medicare.

Overall, the EDC, like many mental health advocacy organizations, is very pleased with this final rule. This is a historic first step in ensuring that people with eating disorders are able to receive the treatment that they need to recover. The final rule does clarify that insurers must cover mental health disorders at parity with medical disorders. There are three primary issues in the regulation we want to highlight: residential treatment, plan standards and disclosure requirements. All three of these areas contain substantial victories for people trying to get coverage for eating disorders.

1. Residential Treatment

While the rule doesn't require that residential services be covered, it does say that if insurers offer "post-acute care services," then they must cover residential treatment and other intermediate services for mental health.

For example, if a plan classifies care in skilled nursing facilities or rehabilitation hospitals as inpatient benefits, then the plan must also treat any covered care in residential treatment facilities for mental health as an inpatient benefit.  This means that if your insurance plan covers, for example, residential rehabilitation after an accident, it must also cover comparable residential or inpatient treatment for eating disorders.

People with eating disorders have been consistently denied inpatient and residential care, while their insurance plans cover comparable medical services. The EDC has long argued this is in violation with MHPAEA, the regulations explicitly clarify this.

2. Medical Necessity Disclosure Requirements

The rule clarifies that people are entitled to information about the standards used by health plans to determine what kind of treatment they cover.

That is, the final regulations require plan administrators to make the plan’s medical necessity determination criteria available upon request to potential participants, beneficiaries, or contracting providers. This information is particularly valuable if people wish to file a complaint alleging that their eating disorder was not treated comparably to a medical one.

People receiving treatment for eating disorders have, unfortunately, experienced coverage denials (typically, inpatient or residential) because of medical necessity. For many consumers it has been nearly impossible to understand how the insurance company made their determination.  Insurers have refused to disclose how the determination of ‘medical necessity ’was made. In a tremendous victory, these regulations clarify that the rationale behind these decisions must be disclosed.

3. Plan Standards

Another regulation in the final rules we want to highlight is plan standards.  In setting up their provider network, if an insurer does not require a patient to go out of state to access post-acute care medical services, then it can not force patients with mental illnesses out of state to access behavioral health residential treatment services.

Additionally, an insurer may no longer exclude coverage for inpatient or residential, out-of-network treatment of mental health disorders when obtained outside of the state where the policy is written, when no similar exclusion  exists for medical benefits exists.

In fact, the final rule added two additional examples of non-quantitative treatment limits (NQTL) to the illustrative list: network tier design and restrictions based on geographic location, facility type, provider specialty and other criteria that limit the scope or duration of benefits for services provided under the plan or coverage. The new

examples clarify that plan or coverage restrictions based on geographic location, facility type, provider specialty, and other criteria that limit the scope or duration of benefits for services must comply with the NQTL parity standard.

EDC Succeeds in Parity Push!

The EDC has worked tirelessly, in the past two years to put pressure on the Administration to release the regulations for the Mental Health Parity Addiction Equity Act of 2008 and to clarify that eating disorders must be covered at parity (click here for more).

This morning the Department of Health and Human Services released their final regulations on the Mental Health Parity and Addiction Equity Act of 2008.  The EDC was part of a conversation this morning with HHS and the Substance Abuse Mental Health Services Administration where they outlined the final regulations. The EDC is excited about a number of the provisions.

While the final rule doesn’t require that residential services be covered, it does require that if a managed care organization (MCO) or health insurers offers “post-acute care services,” then they also must cover residential treatment and other intermediate services on the behavioral health side. Simply put, it means that if a health insurance plan covers chemotherapy [a post-acute oncology intervention after hospitalization], then it must cover residential treatment of substance use disorders or eating disorders. The rule ensures that parity applies to intermediate levels of care received in residential treatment or intensive outpatient settings.

Another, tremendous win for us, is that the final rule clarifies that parity applies to all plan standards, including geographic limits, family type limits, network adequacy.  As many of you have encountered, you’ve needed to travel out of state to treatment centers so this is tremendous.

The EDC is particularly encouraged by the network disclosure requirements, the final rule will require that MCO’s/Insurers disclose medical necessity definitions and the process used to construct NQTL.  This has long been a difficulty faced by people denied coverage for their eating disorders.

This is a tremendous victory for all of those who have struggled through getting insurance coverage at parity. Thank you to those who shared your stories with us, called your Members to advocate for parity, and of course, attended our lobby days. This is our victory together!

We are continuing to comb through the regulations, and will soon let you know what this all means for you. Stay tuned to our blog, or follow us on twitter, or like us on Facebook to get immediate updates.  

Help Support the EDC

One of our junior board members is supporting the EDC. Please consider supporting her, and supporting the EDC!

You can access her brochure here: https://drive.google.com/file/d/0B17m2UfA8Xu-TWJuUnFnQUF1czQ/edit?usp=sharing

Call to Action! EDC Opposes Michelle Obama's Appearance on Biggest Loser: Add Your Voice.

Weight stigma matters to the EDC. We are so concerned about the intersection of eating disorders and weight stigma that it was the focus of our congressional briefing last month. Viewing media that portrays negative stereotypes of overweight people, contributes to a variety of issues including: negative self-image, anorexia, bulimia, binge eating disorder, and more.  As Dr. Puhl underscored in her talk at the Congressional briefing, stigmatizing efforts to help those lose weight actually have a boomerang effect and create more health problems for overweight people. 

 

First Lady Michelle Obama is planning on appearing on NBC’s The Biggest Loser again. The Biggest Loser, unfortunately, is a show that exploits overweight people and reinforces negative stereotyping of overweight people. The show also encourages risky weight loss behaviors that are dangerous and cannot be maintained for an extended time.  Thus those who appear on the show typically gain the weight back, which poses both physical and mental health risks.  The Biggest Loser perpetuates weight stigma rather than promotes health. The EDC is working with BEDA, BingeBehavior.com and others to oppose her appearance on the show.

 

We support Michelle Obama’s nutrition work, but we’ve been concerned about her anti-obesity push for years. In fact the EDC has worked with Congress and other like-minded organizations to ask Michelle Obama to reframe her approach and focus on health not weight so that her efforts do not cause more harm.

 

We’d be happy to work with Michelle Obama’s office to come up with constructive ideas that promote nutrition and combat eating disorders. Unfortunately appearing on the Biggest Loser does neither of these things. We encourage you to sign the petition and call the First Lady’s office urging her to not appear on the Biggest Loser

 

How to do it:

1.  Sign this Petition

 

2.  Calling her office at 202-456-1414 and tell her to not appear on The Biggest Loser. Tell her why you care about this issue.  Encourage Michelle Obama to work with the EDC, BEDA and BingeBehavior.com  and other like-minded organizations to have a serious conversation about promoting healthy eating habits in way that also combats eating disorders.

A special thanks to BEDA and BingeBehavior for spearheading this effort!

Shutdowns, Obamacare and Parity: What Does it Mean?

If you’ve been following the news you know that the federal government is currently in partial shutdown mode. You likely also know, that the tension began when House conservatives attempted to pass a spending bill with a rider that would defund Obamacare. And compromises on spending have often included provisions that would delay the implementation of Healthcare Reform. So what does this mean for the EDC and for eating disorders?

The first very serious problem is that operating under a partial shutdown (or even a short-term continuing resolution, which is expected to be the solution reached through Congressional negotiations) is  the lack of sufficient funding for the Department of Health and Human Services. Currently there are not any robust eating disorders programs at HHS. The EDC has long advocated that HHS increase funding into eating disorders research and prevention programs. Operating at a minimal budget level makes it near impossible for HHS to increase its eating disorders programs.  Additionally sequestration (the across the board funding cuts) hurt the federal government's ability to focus on eating disorders policy. The current spending levels for eating disorders coverage are too little, and too little attention is currently given to eating disorders by the Department of Health and Human Services (HHS).  The EDC urges Congress to pass a robust appropriations bill funding HHS and and to direct HHS to increase research and prevention programs related to eating disorders.

The second issue to be aware is that the Exchanges opened for enrollment (see more here) on October 1.  Coverage purchased through the Exchanges will take effect on January 1. We are continuing to monitor the state plans, to work to ensure that they cover eating disorders at parity. It is imperative that the plans offered through the Exchanges cover eating disorders treatment. Most of the delays that are currently being discussed revolve around a device tax, that wouldn’t effect eating disorders coverage. Another compromise expected to be announced on Tuesday would involve Secretary Sebelius certifying that individuals receiving Obamacare subsidies meet the required income levels, again this would not have an impact on eating disorders coverage.

Another part of the operation of the Exchanges and additional insurance coverage, is the confusion over Mental Health Parity. We are continuing the work we’ve been doing on Mental Health Parity (see more here). The regulations still aren’t out, but we’ve heard from insiders on the Hill that the regulations are expected at the end of this year. Although, it remains unclear whether the timing will change given the recent shutdown. In addition to the two letters sent from Congress to Secretary Sebelius we also continue to put pressure on HHS to clarify that eating disorders covered at Parity

Another Successful Lobby Day!

Last Wednesday was our annual Fall Lobby Day. Once again it was a tremendous success!Thank you to all who came and spoke out on the need for Congress to address eating disorders through important policies!
 

EDC lobby day actually started Tuesday evening with our Awards reception. Dr. Rebecca Puhl was awarded the 2013 Excellence in Policy Research Award, Carmen Cool was awarded the 2013 Excellence in Advocacy Award, and Senator Tom Harkin (D-IA) received the EDC Lifetime Achievement in Policy Award. Senator Harkin has worked with the EDC as a powerful ally in the fight to end eating disorders for nearly a decade and we are grateful that he is such a champion for our cause. In addition to a moving speech, the Senator was able to meet many of our members that evening and hear their stories first hand.  

Wednesday started with message training, which prepared all of the teams for their meetings. Training was a wonderful opportunity to not only really hone our message and prepare for the day, but to share our stories and encourage each other. We left training for the Hill united with a strong and powerful voice.

 

At midday the EDC held a Congressional briefing “Fear of fat and weight stigma: The need to address eating disorders and obesity in tandem”. Representative Alcee Hastings of Florida, hosted the briefing and encouraged us to be persistent in our message. “Don’t write one letter” he said “write a thousand.” And so we will. We are so grateful for Representative Hastings he is a true champion for those with eating disorders. He was awarded with the EDC 2013 Excellence in Policy Award. A special thanks to all of our speakers: Johanna Kandel, Dr Rebecca Puhl, Dr Timothy Walsh, Chevese Turner, and April Winslow.

 

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. 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.  

  

But the work doesn’t end with lobby day; it is just a beginning. In fact, we are working even harder on the Hill to capitalize on the important work done last week.  EDC continues to advocate and educate on the Hill, we are following up with offices and building on this strong foundation to advance our policy goals.

 

EDC lobby days are not only about making Members of Congress pay attention and pass legislation – they are also about empowering those who have suffered as a result of an eating disorder.  We stand together and break the silence.  As one advocate said at the end of the day describing her lobbying experience “It is humbling, gratifying, and utterly life changing.”

 

If you weren’t able to join us on the Hill, there is still time to be a virtual lobbyist to help our efforts. See the details here.

 

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

 

Join EDC Lobby Day as a Virtual Lobbyist!

Are you unable to join the Eating Disorders Coalition for our Fall 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 HR 2101 the Federal Response to Eliminate Eating Disorders (FREED Act) of 2013, sponsored 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!

Congressional Briefing on Fear of Fat and Weight Stigma

Health Reform Q&A

In our previous post (click here) we requested your questions about the Health Reform bill. Thank you all for your questions. See below for your questions and our answers.

Q: What is Health Reform?

The Patient Protection and Affordable Care Act, is a comprehensive bill that reformed health care. It was signed into law in March 2010. It is also known as: The Affordable Care Act (ACA), Obamacare or Health Reform; all of these names refer to this bill.

Q:  I have heard the EDC talk about ‘Parity’ is this different than Health Reform?

Yes, Parity refers to the Mental Health Parity and Addiction Act and requires that insurers offer the same level of benefits for mental health or substance use disorders that they do for medical treatment. If your health insurance covers medical or surgical coverage, then they must cover mental health disorders at parity.

Q: What part of Health Reform is especially important to the EDC?

A key area that the EDC is monitoring and influencing is the essential health benefits that will be covered by the benchmark plans sold in the state exchanges. Health insurance exchanges will be marketplaces where small businesses and individuals who don’t have health insurance through their employer can purchase health plans. 

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 and that all levels of care are covered. The first key step for us is enrollment into the Exchanges, which will begin October 1, 2013.

Q: Does Health Reform matter to me?

Certainly, there may be changes that apply to you, personally (mandatory coverage, etc.), but for eating disorders coverage it is important that the exchanges cover eating disorders at parity. See these blog posts for additional details.

Q: Will the EDC continue to update me, on Health Reform?

Yes, of course.

Join the Movement!

This is the EDC’s 12^th year of lobby days. We are an institution on Capitol Hill. Members of Congress and their staff know us. In Washington, we have put eating disorders on the map.  Members of Congress and other national organizations whom are our allies trust us because of the relationships we have built over the years of meetings, briefings, and education we have done on the Hill with you. So join us September 18 and be part of this movement. You can make a difference; you can find your voice!

The Congressional briefing this year will be titled “Fear of Fat and Weight Stigma: Why We Need to Address the Intersection of Obesity and Eating Disorders.” Our panel of speakers will educate you and motivate you to make a difference.

If you haven't lobbied before, don't worry we will train you and prepare you. You'll go to the Hill with confidence and as part of a team. To see how lobby days work click here for our video that explains it all.

Joining us on the Hill is an incredibly empowering experience. You will be able to make your voice heard and make a difference for eating disorders policy. If you’re looking for motivation watch our video ‘I Stand For FREED’ here

Join us. Join the movement! Click here to register now for lobby day.

EDC is Looking for Qualified State Leaders

The Affordable Care Act (ACA) continues to be implemented and will have a great impact on health care coverage for people with eating disorders. A key area that we are monitoring and influencing is the essential health benefits that will be covered by the benchmark plans sold in the state exchanges. We’ve released a survey that we conducted of all of fifty states and the District of Columbia’s proposed benchmark plans (see our blog for details). We discovered a wide disparity in the anticipated mental health service coverage between states.

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 and that all levels of care are covered. The first key step for us is enrollment into the Exchanges, which will begin October 1, 2013.  We realize that this is an especially crucial time to ensure that people with eating disorders are able to receive the treatment and care that they both need and deserve.

If you are interested in becoming a State Leader and helping us influence the implementation of these plans in your state, please email manager@eatingdisorderscoalition.org for more information.

Health Reform Q&A

We are often asked specific questions about the Affordable Care Act. We know it’s a complicated topic, and it’s confusing about the effect it will have on eating disorders. We want to help. Do you have a question about health reform and eating disorders? Do you wonder what the essential health benefits are? Or why the EDC keeps talking about the state exchanges? We want to answer your questions for you! Send your questions to Melanie Morris at mmorris@eatingdisorderscoalition.org and she’ll answer them in a blog post.

Educating Congress One Office At a Time

The EDC is an organization that’s primary purposes is to influence federal policy. We do that through a variety of ways, we draft and advocate for legislation such as the FREED Act, work with the Administration such as submitting comments of proposed rules, and we work with Congress on relevant pending legislation. However, at the most basic level, our work consists of meeting with Members of Congress and/or their staff and educating them on eating disorders. We brief them on the seriousness of eating disorders, we discuss current eating disorders policy, relevant legislation, and current problems with eating disorders coverage. 

Some Members of Congress we frequently work with are great champions for our cause. We developed a relationship with them and they rely on our expertise and advice. However, we need more Members to care about this important cause. We need to develop these relationships with more Members, we need eating disorders to be an issue that every Member of Congress cares about. Because of this we meet with every office every year. 

There are 435 Representatives, 100 Senators, and 6 delegates (these non-voting members represent District of Columbia, Guam, Puerto Rico, US Virgin Islands, American Samoa, and the Northern Mariana Islands). The EDC meets with every office every year. That is 541 offices every year. We meet with Members and/or their staff and we educate them on eating disorder, we discuss the FREED Act, Parity concerns, and ask for their support. Every year. Every office. 

Join us on September 18 for Lobby Day, and meet with a few of these offices yourself and help get your Members of Congress to champion this great cause with us.