Friday, December 21, 2012

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

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:!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.

Monday, December 17, 2012

Dear EDC Advocate

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

Friday, December 7, 2012

When there is a will there is eventually a way.

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. 

Tuesday, December 4, 2012

Parity for Behavioral Health Coverage Delayed by Lack of Federal Rules


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.

Friday, November 30, 2012

Advocates Push for More Research Into Eating Disorders

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

Wednesday, November 14, 2012

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

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

Click here to read more

Tuesday, October 2, 2012

Action Alert: Parity Sign On Letter

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!

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!

Thursday, September 27, 2012

SAMHSA at 20: From Hopelessness to Recovery and Prevention


September 26, 2012
by Ron Manderscheid

Happy 20th birthday to SAMHSA! We wish you scores more years of continued success!

On October 1, SAMHSA will mark its 20th birthday. We wish to commemorate that occasion and to celebrate the progress from hopelessness to recovery and prevention that SAMHSA has helped to foster between 1992 and 2012.

Over the past 20 years, the behavioral health field has seen dramatic change. When SAMHSA was established in 1992, the field was still struggling to develop community-based services, foster the peer/consumer movement, and prove that prevention, treatment, and recovery were possible. Today, consumer self-determination and shared decision-making inform community service systems. The concept of recovery empowers consumers. And health promotion, disease prevention, and early intervention have become essential elements of our behavioral health system.

The experience of recovery—along with the fostering of personal resilience through health promotion and disease prevention—are the two most important outcomes to emerge since SAMHSA’s founding and, actually, since the creation of the behavioral health field itself. Just 20 years ago, recovery was not part of behavioral health’s lexicon. Even within the behavioral health field, many didn’t believe that recovery was actually possible.

The idea of recovery grew out of the self-help movement, including Alcoholics Anonymous, Recovery Incorporated, Narcotics Anonymous, On Our Own, and the family movement including Al-Anon. Peers and consumers brought the concept to the substance use and mental health fields, demonstrating that their knowledge and insights could not only improve their own care but help shape an entire field.

Promoting Recovery. Since then, recovery has become a ubiquitous goal within behavioral health and a national call to action. SAMHSA adopted the concept and has played a vital role in promoting it. For example, SAMHSA recently has formulated a working definition that describes recovery from behavioral health conditions. SAMHSA also articulated several important related principles: recovery emerges from hope; occurs via many pathways; involves individual, family, and community strengths and responsibility; is person-driven, holistic, and culturally-based and influenced; is based on respect; and is supported by peers and allies through relationships and social networks and by addressing trauma.

Promoting Resilience. SAMHSA also recognized early how important it is to pay much more attention to promoting heath and preventing disease. The result has been increased emphasis on trauma’s critical role in mental illness and substance use, and the importance of early intervention efforts, such as Screening, Brief Intervention, and Referral to Treatment (SBIRT). The need to contain health care costs points squarely in this direction. SAMHSA has provided essential leadership at the federal, state, and community levels through major prevention initiatives. This work will influence how the Affordable Care Act approaches prevention of chronic disease.

Reducing Disparities. SAMHSA also has made major strides in reducing the disparities in health status and care that people with behavioral health conditions often experience. One direct consequence is the Wellstone-Domenici Mental Health Parity and Addiction Equity Act of 2008. That landmark legislation reduces treatment disparities between behavioral health and medical care in large, private insurance plans. The ACA has extended those protections to people newly insured through Medicaid and state health insurance exchanges. Universal coverage will promote equity in health status and treatment for those with behavioral health conditions. SAMHSA also has made major strides in addressing another type of disparity: the lack of culturally competent behavioral health care.

Looking to the Future. Much still remains for SAMHSA to do. The ACA offers our field unprecedented opportunities. Thanks to the ACA, for example, adults earning up to 138 percent of the federal poverty level will gain Medicaid coverage. State health insurance exchanges will cover uninsured adults with incomes above that level. As a result of these two changes, 32 million adults—about 12.4 million with pre-existing mental or substance use conditions—will enjoy insurance coverage.

To fulfill these and other opportunities, SAMHSA and the behavioral health field must engage the broader health field, as well as communities themselves, to support good behavioral health for all. They also must promote community- and population-based prevention, treatment, and recovery services, and support individuals as they seek their own paths to resilience and recovery.

To commemorate SAMHSA’s 20th birthday, I and Paul Samuels of the Legal Action Center prepared a view from the field. Our report offers a look at the two decades of SAMHSA’s past successes and the development of the behavioral health community during this period, as well as key directions and steps needed for the future. This report will be available at the SAMHSA anniversary event on October 4.

Our hats are off to SAMHSA and its entire current and past staff for all the remarkable things you have accomplished during your first 20 years. We wish you many, many more years of continued success in your endeavors to improve behavioral healthcare.

Law & Policy
Healthcare Reform

Ron Manderscheid, PhD
V: 202-942-4296; M: 202-553-1827
The Voice of Local Authorities in the Nation's Capital!

Tuesday, September 25, 2012

Parity – Patriots Continue the Fight

 On September 18th, in Los Angeles, California, The Parity Implementation Coalition held its 5th “Parity Field Hearing” of 2012 at the Chicago School of Professional Psychology. The purpose behind the 2012 Parity Field Hearings is to highlight the persistent insurance and treatment inequities faced by patients and providers because we still lack final rules and regulations for the Mental Health Parity and Addiction Equity Act (MHPAEA). The 2012 Hearings are modeled after the field hearings in 2007, which were successful in pushing President Bush to sign MHPAEA into law.
The President of the Chicago School of Professional Psychology, Dr. Michele Nealon-Woods, opened the Los Angeles event, introducing former Members of Congress Patrick J. Kennedy and Jim Ramstad, known as the “Parity Champions," who educated as well as rallied the crowd with their opening remarks. Congressmen Kennedy and Ramstad proclaimed with inspiring passion that there is a “political urgency” to pass the final rules and regulations so that those affected by mental illness can finally access treatment on par with those suffering a physical illness. Of particular concern for Kennedy is how access to mental health treatment for our “nation’s heroes," our returning Veterans and active duty members of the military, is grossly inadequate and costing lives. He quoted alarming statistics from the September 17, 2012 IOM consensus report, “Substance Use Disorders in the U.S. Armed Forces," and shared that over 50% of returning Iraq and Afghanistan veterans will try to access care for what are being called, “invisible wounds," such as depression, PTSD, and eating disorders, only to be turned away because of the lack of access to treatment. Congressman Ramstad called the practices that insurance companies use to circumvent the law an “outrage and travesty” and noted that “too many people don’t realize these are life and death issues." He also admonished the administration by sharing that his research shows that no other bill has ever needed this long for the administration to adopt final rules and regulations. Both men called on the administration and the Secretaries of Labor, Treasury and Health and Human Services to take exigent action to address the lack of final rules and regulations, which would thus provide the long awaited oversight necessary to hold accountable the insurance companies who have been circumventing the MHPAEA.
The night then moved on to three panels of speakers. The first panel included a dad and son, Kevin and Connor Kinnon. Kevin told the story of how his son Connor suffered with severe depression that led to suicide attempts, in part because Connor was never given adequate treatment despite the fact that his dad had high quality insurance. NAMI President Keris Myrick shared her story of hope and recovery, recovery that was possible because she had access to the treatment she needed for her schizoaffective disorder and OCD. Navy Veteran Vikash Sharma shared his heart-wrenching battle to receive proper treatment for his PTSD that had gone undiagnosed for four years post-discharge from the Navy. The second panel included the former Director of the California Department of Managed Care, the Chief Psychologist at the U.S. Veterans Initiative, a Research Psychologist from UCLA’s Integrated Substance Abuse, and Lisa Kantor, a Los Angeles lawyer and partner in Kantor & Kantor LLP who represents people denied health benefits for treatment of both physical and mental illnesses, including eating disorders. The third panel of speakers included the President and CEO of the Betty Ford Center, the President-elect of the California Society of Addiction Medicine, the Director of Government Regulations for the Clinical Social Work Association, and the President-elect of the California Academy of Child and Adolescent Psychiatry.
Many people are familiar with California attorney, Lisa Kantor, EDC Board Member, who spoke on Panel Two. Lisa Kantor’s dedication to those affected by eating disorders is widely known and well-respected for many reasons, but perhaps most notably she is known because of her case involving Jeanene Harlick. Ms. Harlick’s case became the basis upon which the 9th U.S. Circuit Court of Appeals based its ruling that health plans must provide coverage for all “medically necessary treatment” for eating disorders “under the same financial terms as those applied to physical illnesses.” During her speech at the field hearing, Ms. Kantor shared stories of just how egregiously insurance companies violate the law when doling out access to care for those suffering with eating disorders. She told of a young woman whose insurance company denied her continued treatment because they felt that since she had reduced her laxative use down to 50 per day (mind you this decrease was only accomplished because she was in 24 hour treatment and closely monitored), she no longer needed treatment. And she shared the story of a young woman who died after her stomach ruptured as a result of bulimia. Unfortunately that same young woman had been denied treatment in the years prior to her death because her insurance company didn’t treat offer coverage for her eating disorder on par with the coverage they offered for physical illnesses.
Ms. Kantor concluded her speech with an essential statement, a statement we hope Secretaries Geithner, Solis and Sebelius will heed and act upon with urgency: “These kinds of disparities happen to people with eating disorders every day. These kinds of disparities are killing people.  And these disparities are why we urgently need the rules and regulations in place and we need the Final Rules and Regulations to specifically include eating disorders under Parity. “
The next Parity Field Hearing takes place in Delray Beach, Florida on October 9, 2012 and is sponsored in part by EDC Member Organizations, The Alliance for Eating Disorders and Oliver Pyatt Treatment Center. At the Florida hearing, Congressmen Kennedy and Ramstad will once again rally consumers, professionals and all those concerned about persons suffering from mental illness, urging the administration to put in place the long overdue and life-saving final rules and regulations for the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act. For more information about the Hearings or to share your story about inadequate parity, visit:  The Eating Disorders Coalition will continue to be highly active in the Parity Implementation's bold and courageous efforts to ensure that final rules and regulations are enacted as soon as possible. Please contact us to get involved:

Monday, September 17, 2012


The EDC continues to work closely with the Parity Implementation Coalition to ensure that the 2012 Parity Field Hearings include stories about those with eating disorders who continue to be denied care, despite the passage of the Mental Health Parity and Addiction Equity Act (MHPAEA). We have been a strong and consistent voice at the 2012 Field Hearings and we are thrilled that Lisa Kantor, EDC board member and attorney who takes on insurers who refuse life saving and necessary care, is speaking at the Los Angeles, CA, Parity Field Hearing on September 18th.  We hope you are able to attend this historic event.

Here is the agenda for the Los Angeles Parity Field Hearing:

Monday, September 10, 2012

Add Your Signature!

The Eating Disorders Coalition encourages you to add your signature to this Petition:

  • Target: The Walt Disney Company
  • Sponsored by: Ann W.
Disney recently recreated its most beloved classic cartoon characters for an upcoming holiday promotion for Barney’s Department Stores. In the new ads, Minnie Mouse, Mickey Mouse, Daisy Duck and Goofy are all at least 5’11 in height, and are strutting sexily down a Paris Runway wearing clothes designed by Dolce & Gabbana and other high-end labels. Their limbs are gangly and their bodies have no shape. These new characters send a terrible message to young children reinforcing an already prevalent attitude that you have to be stick thin to be stylish.
Every day, children are inundated with unhealthy media images encouraging them to aim for unrealistic ideals of beauty perpetrated by corporate marketing machines. This has ultimately led to a nation of people with eating disorders such as anorexia and bulimia.
Please tell Disney NOT to allow these beloved characters to be used in such an unhealthy manner!

Tuesday, July 31, 2012

The EDC was invited to be a guest blog for Disruptive Women: Are anti-obesity efforts causing body image problems in kids?

Written By : Jeanine C. Cogan, Ph.D. on July 31, 2012

The Eating Disorders Coalition for Research, Policy & Action (EDC) is a non-profit organization working to advance the federal recognition of eating disorders as a public health priority.  Through education, lobbying and advocacy efforts we promote policies that address the problems faced by people with eating disorders, and that may prevent further people from developing eating disorders. We are a coalition of more than 35 organizations in the eating disorders education, prevention and treatment communities and represent millions of people impacted by eating disorders and their families, providers, researchers and advocates.  In this article we highlight two efforts currently underway.

Challenging Anti-Obesity Efforts

Anti-obesity efforts such as the one initiated by Michelle Obama, while often well-intentioned, are causing harm. A report published January 24, 2012 in Science Daily from the C.S. Mott Children’s Hospital National Poll on Children’s Health examines the association between school-based childhood obesity prevention programs and an increase in eating disorder symptoms among children.  The poll asked parents about obesity prevention programs in their children’s schools and about food-related behaviors and activity that may be worrisome.  Since the implementation of an obesity prevention program in the schools 30% of parents report at least one worrisome behavior in their children that could be associated with the development of eating disorders.  Additionally, 7 percent of parents report that their children have been made to feel bad at school about what or how much they were eating. These behaviors include inappropriate dieting, excessive worry about fat in foods, being preoccupied with food content or labels, refusing family meals and having too much physical activity.

Reports from Australia also indicate a high increase in eating disorders since anti-obesity campaigns began. A Medical Director of Mental Health at Australia’s Austin Hospital said he believed some of the 9 and 10-year-olds being treated for anorexia were becoming ill from “the panic” created by anti-obesity campaigns.

A substantial body of evidence from the eating disorder literature demonstrates that when important agents in children’s social environment (e.g. parents and peers) endorse a preference for thinness and place an importance on weight control, this contributes to body dissatisfaction, dieting, low self-esteem and weight bias among children and adolescents.  Studies show that body dissatisfaction and weight-related teasing are associated with binge eating and other eating disordered behaviors, lower levels of physical activity and increased weight gain over time.

The Solution

The focus of future “obesity interventions” should focus on health, not weight. Future interventions should focus not only on providing opportunities for appropriate levels of physical activity and healthy eating, but also specifically seek to promote self-esteem, body satisfaction, and respect for body size diversity.

The implementation of many anti-obesity programs is causing concern in that they may be promoting some negative consequences like an increase in eating disorders.  We urge any company, agency or department who is offering such a program to incorporate the latest scientific evidence and best clinical practices developed by the Academy for Eating Disorders:

  • Studies show that body dissatisfaction and weight-related teasing are associated with binge eating and other eating disordered behaviors, lower levels of physical activity, and increased weight gain over time. Therefore, constructing a social environment where all children are supported in feeling good about their bodies is essential to promoting health in youth.
  • Programs should be careful not to use language that has implicit or explicit stigmatizing anti-fat messages, like “fat is bad,” “fat children are not healthy,” or “fat people eat too much.” Interventions should focus not only on providing opportunities for appropriate levels of physical activity and healthy eating, but also promote self-esteem, body satisfaction, and respect for body size diversity.
  • There is ample scientific evidence that an environment focusing on weight and thinness is a risk factor for eating disorders.  Moreover, a reliance on BMI as a proxy for health leads to many “false positive” assumptions of illness in healthy heavier children, and many overlooked problems of disordered eating and harmful weight loss practices in average-weight children.
  • Interventions should be health-centered, not weight-focused, as weight is not a behavior and therefore not an appropriate target for behavior modification.  Children across the weight spectrum will benefit from a healthier diet, and more opportunities for physical activity. Therefore, interventions should be weight-neutral, i.e. aim to increase healthy living at any size rather than promoting specific goals for weight change.
The EDC has communicated our concerns directly to Michelle Obama urging her to change her anti-obesity (Let’s Move) Campaign.  We also worked with Congressman Hastings and 34 additional Members of Congress who sent a letter to Michelle Obama in 2010 asking her to expand the Let’s Move Campaign to focus on health more broadly and address the prevention of eating disorders.  Two years later, after no action on the part of Michelle Obama’s office and new evidence pointing to the harm created by anti-obesity initiatives in the schools, EDC worked with 22 Members of Congress on a follow-up letter sent in June of 2012. We also gained support from more than 40 organizations who endorsed this Congressional effort.

What You Can Do

Challenge anti-obesity initiatives and urge them to stop their potentially harmful efforts or change their focus.  Use this article as support for your efforts.

Join the nearly 100 other advocates that come to EDC National Lobby Days we hold twice a year and share your stories and perspectives.  For more information go to

Holding Insurance Companies Accountable

In early 2011 the EDC initiated the Hold Insurance Companies Accountable Campaign (HICA) in response to continued and consistent stonewalling tactics and inappropriate denials by insurance companies for life saving eating disorders treatment.  Consequences of not receiving necessary health insurance coverage include financial ruin for families paying out of pocket, a lack of life saving care, which leads to the worsening of symptoms and in some cases death.  Anorexia has the highest mortality rate of all mental illnesses, upwards of 20%.  Individuals with anorexia nervosa are 11 times more likely to die than their peers and they are 57 times more likely to die of suicide. Mortality rates are also higher for people with bulimia nervosa (3.9%), and eating disorders not otherwise specified (5.2%).

According to the nationally recognized law firm of Patton Boggs, the mental health parity statute clearly states that limits on the scope and duration of treatment must be applied no more restrictively in the mental health benefit than in the medical/surgical benefit. The statute defines treatment limitations as “limits on the frequency of treatment, number of visits, days of coverage, or other similar limits on the scope or duration of treatment.”

Not complying with the parity regulations is a calculated effort to avoid costs at the expense of people’s health and lives.  Treatment should be determined by the treating professional based on severity and type of illness, rather than what is arbitrarily allowed by an individual’s insurance company. Through legal and political advocacy, the EDC’s Hold Insurance Companies Accountable Campaign is working with specialized attorneys and experts in the field to put an end to such discriminatory and deadly practices.

What You Can Do

1. Write to your insurance commissioner. Insurance commissioners have the responsibility of protecting the interests of the consumer. They need to hear from those who are not receiving necessary treatment because insurance companies refuse to pay. The more people who write, the bigger the impact. To write your commissioner go to and click on the HICA link.

2. Call your Members of Congress. A key role of legislators is to take care of constituent concerns. In fact every Member of Congress has staff hired specifically to do so. If your insurance company is stonewalling care, legislators need to know and may be able to help. To look up your legislators for the Senate go to and for the House go to

Thursday, July 12, 2012

Update from EDC in DC

Quick update from Washington, DC

EDC just left Capitol Hill where we met with key administrators for parity and the implementation of ACA, Pam Hyde from SAMHSA and Sherry Glied with HHS and again raised the issue of eating disorders and continuous denial of residential and other eating disorders treatment. They told me that they appreciate us consistently raising this issue and that SAMHSA and HHS are putting a lot of resources into researching the trends of denying residential both pre and post parity. I spoke with Pam Hyde and HHS leaders on how we can work with them to remedy this issue.

We will keep up the pressure until we see results!

Thursday, June 28, 2012

The Eating Disorders Coalition for Research, Policy & Action (EDC) Applauds the Supreme Court's Ruling to Uphold the Affordable Care Act.

This is a huge victory for millions of Americans needing health care coverage for eating disorders. Unfortunately too many people seeking treatment for eating disorders today are denied life saving care due to stonewalling tactics and inappropriate denials by health insurance companies. With the passage of the ACA and a number of key provisions such as the law's guarantee of coverage for people with pre-existing conditions and the requirement to cover mental health as an essential health benefit, some of the widespread discriminatory practices by insurance companies against people with eating disorders may come to an end. The ACA is an important step in holding insurance companies accountable. The EDC will continue our aggressive efforts to influence the implementation of the ACA at the Federal level so that people with eating disorders receive the treatment they need and deserve.

What the EDC has done?
-Attended regional forums with the Department of Health and Human Services (HHS) with specific recommendations to ensure treatment for eating disorders is part of the ACA.
-Submitted comments to HHS during the open comment periods with specific recommendations to ensure treatment for eating disorders is part of the ACA.

-Met more than once with key officials at HHS with specific recommendations to ensure treatment for eating disorders is part of the ACA.

What can you do?
Contact your state legislators and/or ACA implementation committee to learn how you can be part of the discussions and influence the process. Be a voice for eating disorders treatment and make sure that gets included in each state's implementation.

Wednesday, June 27, 2012

EDC Attends Mental Health Parity Field Hearing in Maryland

EDC Attends Mental Health Parity Field Hearing in Maryland with former Congressmen Kennedy & Ramstad

The event was standing room only and attended by approximately 250 people.  The forum was chaired by Rep. Chris Van Hollen (D-MD) and attended by former Reps. Patrick Kennedy and Jim Ramstad and current Members Moran (D-VA) and Tonko (D-NY).

Three panels of witnesses made a strong case for the need for full and robust implementation and enforcement of MHPAEA.  Witnessed included:

  • Dr. Paul Berger
  • Ann Price
  • Adrian & Diana Veseth-Nelson
  • Dr. Josh Sharfstein, Secretary of the Maryland Department of Health and Mental Hygiene
  • John O’Brien, Director of Health Care and Insurance, Office of Personnel Management
  • Brenda Wilson, Associate Commissioner, Life and Health Section, Maryland Insurance Administration
  • Dr. Raymond Crowel, Chief of Behavioral Health and Crisis Services, Montgomery Country Department of Health and Human Services

  • Dr. Steve Daviss, Chair of Psychiatry, Baltimore Washington Medical Center
  • Ellen Weber, Professor of Law, University of Maryland Francis King Carey School of Law Drug Policy Clinic
First Panel
During the first panel, Dr. Berger, a dentist in recovery from addiction, and Ann Price, a career flight attendant with PTSD and in long-term recovery from addiction, talked about their struggles trying to get their insurers to pay for their treatment.  

Adrian and Diana Veseth-Nelson represented the veteran and military family voice; Captain Veseth-Nelson was medically retired from the Army last year after being diagnosed with severe PTSD following his second tour in Iraq.  He and his wife Diana talked about the stigma associated with mental illness and the need for robust treatment for both veterans and their family members. 

Second Panel
The second panel included local, state and federal government witnesses. First, Dr. Sharfstein, Secretary of the Maryland Department of Health and Mental Hygiene, spoke about the importance of the Affordable Care Act and said Maryland is committed to its full implementation unless stopped by the Supreme Court or some other body. 

Following Dr. Sharfstein, John O’Brien with the Office of Personnel Management talked about parity in the Federal Employee Benefits Program (FEHBP).  As you all know, President Clinton signed an executive order requiring parity for FEHBP plans.  While FEHBP does not have to comply with MHPAEA, following the law’s enactment, FEHBP required its carriers to comply with the stronger protections (such as out-of-work parity) in MHAPAEA than in the existing FEHBP parity requirements.  During the question and answer period following the panel’s statements, Rep. Kennedy asked Mr. O’Brien about recourse FEHBP takes with plans who are denying large numbers of claims and he replied that during the contract renewal process, they had made it clear to certain plans they were unhappy. 

Brenda Wilson with the Maryland Insurance Administration talked about Maryland’s history with parity and the state’s efforts to comply with MHPAEA.  During the question and answer period, Rep. Kennedy asked her why there had only been 30 complaints filed with her office in 2011 related to mental health and addiction treatment.  She replied that they do everything they can go get the word out that patients have a right to appeal, but she suspected the nature of the illnesses make it very difficult for patients and family members to go through the arduous appeals process.

Dr. Raymond Crowel with the Montgomery Country Department of Health and Human Services spoke about how non-quantitative treatment limits in Medicaid often limit access to care and he emphasized the need for requiring outcomes reporting to ensure patients are getting the care they need. 

Third Panel
On the third panel, Dr. Daviss with Baltimore Washington Medical Center echoed Dr. Crowel’s comments that non-quantitative treatment limits (NQTLs) often limit access to care. He talked about how obtaining pre-authorization for patients he sees in the emergency department who need to be admitted for psychiatric treatment is significantly more difficult than for patients his colleagues admit for medical/surgical treatment.  He also spoke about lack of providers in networks, a phenomenon called “phantom networks” where plans lists providers in their networks who are not really available to treat patients. 

Ellen Weber with the University of Maryland spoke about the need for a final rule that addresses the important outstanding issues of scope of service, NQTLs and application of MHPAEA to Medicaid managed care plans. Professor Weber talked about how it is difficult for patients to appeal because MHPAEA’s rules are complex, the plans control the information and patients and providers have limited capacity to spend the significant time required to file an appeal.

I thanked both Kennedy and Ramstad for their continued passionate efforts to make sure people with eating disorders receive the life saving care they need.  Be sure to attend the hearings near you. For schedule and information:

Monday, June 18, 2012

EDC Wins Big for Eating Disorders Research

Last week, the Senate Appropriations Committee agreed to FY 2013 funding for federally financed health research.  Under the leadership of the Eating Disorders Coalition for Research, Policy and Action (EDC), the funding bill contains 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. This initiative holds out the prospect of attaining two key EDC goals: the first is greater attention to and the coordination of eating disorders research across nine National Institutes of Health who possess active research portfolios in this area; the second is increased support for federal Centers of Excellence in eating disorders research at academic medical centers and universities in the United States.  The EDC drew inspiration for this breakthrough initiative from the research sections of the House and Senate Federal Response to Eliminate Eating Disorders Act (the FREED Act). 

In short, the EDC is committed to an aggressive strategy intended to achieve key policy goals in Washington, D.C. through available legislative and regulatory vehicles.  The EDC has excellent relationships with senior officials at NIMH who we anticipate will be key players in implementing this critical congressional initiative.

Wednesday, June 13, 2012

Thank you 1Mind4Research

 The EDC is glad to be connected with One Mind for Research. Here are some highlights from their 1st Annual Meeting of the One Mind for Research Campaign.

Today, One Mind for Research issued a release to announce the highlights from its 1st Annual Meeting of the One Mind for Research Campaign: Curing Brain Disease. The energy and emotion of the conference, which was focused on advancing brain research, anti-stigma advocacy and mental health policy are captured in video highlights. A complete collection of videos from the meeting will be available later this month.

1st Annual Meeting of the One Mind for Research Campaign: Curing Brain Disease

June 6, 2012, Rutherford, CA – One Mind for Research completed its 1st Annual Meeting of the One Mind for Research Campaign: Curing Brain Disease on May 23-25, 2012 at the University of California, Los Angeles, firmly establishing itself as a leader in brain research, anti-stigma advocacy and mental health policy.

The conference was welcomed by Los Angeles Mayor Antonio Villaraigosa and UCLA Chancellor Gene Block and featured over 350 of the world’s leading scientists and researchers in a discussion of how to accelerate the next generation of innovative neuroscience discoveries. A video recap of the conference is available online at beginning today. Complete videos of all of the presentations during the three-day event will be available soon.

The 2nd Annual One Mind for Research meeting will take place at Johns Hopkins University in Baltimore, Maryland. Tentative dates are May 21 -23, 2013.

Highlights of the 2012 conference, among many, included FasterCures chairman Michael Milken’s presentation on the bioscience revolution, noting that the cost of sequencing a genome has been reduced from millions of dollars to $1000, advancing the opportunities for genetic therapies.

Robert Klein, president of Klein Financial Corporation and author of California Proposition 71, the California Stem Cell and Cures $3 billion ballot initiative, presented an inspirational outline on the opportunities for innovative global research funding.

Michael Thompson of PricewaterhouseCoopers presented initial estimates of a study funded by One Mind on the costs of brain disease in the United States. Preliminary studies find costs approaching $1 trillion in 2012 alone. The final report is expected within weeks.

Patrick Kennedy inspired the attendees with his call to action for the Healthcare Parity Campaign and Emmy, Golden Globe and Tony Award winning actress Glenn Close chaired a panel on the science of stigma.

Among the keynote moments of the 2012 meeting was the presentation of the One Mind for Research TBI/PTS Knowledge Integration Network by Dr. Geoff Manley, UCSF. The TBI/PTS KIN is a digital environment for multiple-source data sharing, with open analysis tools, and tracking systems for working with complex data for those involved in the areas of TBI and PTS. This system will foster an open science approach among academia, industry, non-profits and governments, to remove the barriers to effective scientific and clinical research that will increase collaboration, and speed diagnosis and treatment on an unprecedented level.

Emphasizing the dire need for quick and efficient research and treatment of TBI/PTS was Sergeant First Class Victor L. Medina and his wife, Roxana Delgado, who gave a touching account of his experiences dealing with this critical issue facing our returning veterans.

“During the past year, we have made enormous strides in building our team of partners to take on this emerging national and international challenge,” stated One Mind CEO General Peter W. Chiarelli, U.S. Army (Retired). “This conference brings together an international coalition of renowned neuroscientists, policy makers and advocates, all striving to end brain-related illnesses in our lifetime.”

“The United States is facing a growing burden as a result of brain diseases,” added Garen Staglin, co-founder of One Mind for Research. “At this 1st annual conference we have reported on our progress toward cures and presented for the first time an independent study of what it costs our country in economic terms. We hope our findings will stimulate new donors and investment for research.”

One Mind for Research defined the first global scientific roadmap required for curing diseases of the brain within 10 years at last year’s launch conference held in Boston. From that roadmap, and in conjunction with its partners, One Mind is introducing a major program that address traumatic brain injury (TBI) and post-traumatic stress (PTS) that will be the first of many aimed at One Mind’s vision of a world free of brain disease. These efforts are prototype programs to dramatically improve treatments for TBI and PTS patients while also establishing broad collaborations within the neuroscience community.  Other projects are underway for Multiple Sclerosis (MS) and Alzheimer’s disease.

For more information on One Mind for Research, and the 1st Annual Meeting of the One Mind for Research Campaign: Curing Brain Disease, please visit

About One Mind for Research
One Mind for Research is an independent, non-profit organization that is committed to curing diseases of the brain and eliminating the stigma and discrimination they cause. Through collaboration with partners in science, advocacy and corporations, One Mind for Research is working to advance a 10-year plan to cure the diseases of the brain by creating change in the way scientists, health care professionals, NGO and government partners think about and conduct scientific and translational research, and by advancing mental health related public policy.

About Brain Disease
Brain diseases are the number 1 cause of adult disability globally, afflicting, in some form, 1 out of every 3 people. For example, among the psychiatric diseases (i.e. mental illnesses), major depressive disorder leads in prevalence, disabling about 5% of the population to some degree in any given year. Among veterans returning stateside from service in Iraq, 300,000 are estimated to have TBI and/or PTS, adding to the total estimate of 1.5 million Americans living with these diseases. Beyond the emotional pain endured by these individuals and their families, the total lifetime treatment cost for these individuals calculates to about $3.3 trillion. This and the cost of dementia care for our nations’ growing elder population ($400 billion annually now, to triple by 2050) will soon prove beyond the ability of the U.S. economy to sustain—unless neuroscience starts an emergency pace, right now. At a time of decreasing government research funding and pharmaceutical industry’s widespread withdrawal from psychiatric drug R&D, this cause needs public support now to develop the preventions and cures that will protect the brain health of people worldwide.

Media Contact:
Fuller & Sander Communications
Tom Fuller, 707-253-0868,
Monty Sander, 707-253-8503

Thursday, June 7, 2012

Congratulations to Lisa Kantor

The Eating Disorders Coalition extends our deepest gratitude to Lisa Kantor and her team for fighting this battle until justice was served! On behalf of all those affected by eating disorders, we thank you and congratulate you on this victory!

Kantor & Kantor, LLP Announces Ruling That Health Plans Must Cover Residential Treatment for Eating Disorders

Ninth Circuit Decision Clarifies Insurer Obligations Under California Mental Health Parity Act

LOS ANGELES, June 5, 2012 /PRNewswire via COMTEX/ 

Kantor & Kantor, LLP announced today that the Ninth U.S. Circuit Court of Appeals has denied an insurer's request for rehearing of a significant victory for people suffering from nine enumerated mental health conditions - eating disorders in particular. The Court confirmed its August 26, 2011 decision that the California Mental Health Parity Act requires health plans to provide coverage of "all medically necessary treatment" for "severe mental illnesses" under "the same financial terms as those applied to physical illnesses." In the latest decision, Harlick v. Blue Shield of California, the court held that health plans in California are obligated to pay for residential treatment for people with eating disorders even if the policy excludes residential treatment.

"We appreciate that the Court not only denied Blue Shield's request for rehearing and rehearing en banc but also issued a new opinion with added clarity about the broad scope of California's Mental Health Parity Act," said Lisa Kantor of Kantor & Kantor, LLP, who represents the plaintiff Jeanene Harlick. "The majority opinion takes a common sense approach in interpreting the Act and accomplishes the legislative purpose of mandating full coverage for severe mental illnesses."
Jeanene Harlick has suffered from anorexia for more than 20 years. In 2006, her physicians recommended treatment at a facility qualified to treat eating disorders. Although Blue Shield agreed to pay for the treatment, after 10 days it denied coverage, saying the plan did not cover residential treatment even though the insurer agreed the treatment was medically necessary

In July 2008, Kantor sued Blue Shield on Harlick's behalf, arguing among other things, that Blue Shield's health plan violated the California Mental Health Parity Act. Blue Shield argued that it had discretion to deny coverage, and the district court agreed. Harlick appealed, and the Ninth Circuit ruled in her favor. Blue Shield requested a rehearing and a rehearing en banc (before all judges of the Ninth Circuit). The briefing on these requests was completed in November 2011. The California Department of Insurance filed a Brief of Amicus Curiae (friend of the Court), opposing Blue Shield's requests and supporting Harlick's position. The Department of Managed Healthcare did not file a similar brief in the matter, despite its responsibility for regulating health care service plans in California. 

For more information about Lisa Kantor and legal assistance for eating disorders, follow this link: . 

About Kantor & Kantor, LLP
Kantor & Kantor is one of the largest law firms in the country exclusively representing plaintiffs who have been denied insurance benefits under life, health, disability and long-term care policies. The firm has extensive experience with the complex appeals process and federal court litigation of ERISA matters, as well as the handling of Insurance Bad Faith matters. 

For more information, log on to , call (800) 446-7529, or follow the firm at .
SOURCE Kantor & Kantor, LLP
Copyright (C) 2012 PR Newswire. All rights reserved

Monday, June 4, 2012

EDC Succeeds! Co-Chair of the Congressional Eating Disorders Caucus Agrees to Cosponsor the FREED Act

The Eating Disorders Coalition just received word from Congresswoman Nita Lowey's office that she has added her name as a cosponsor to the Federal Response to Eliminate Eating Disorders Act (H.R. 1448). We appreciate Congresswoman Lowey's leadership on this issue as exemplified not only as the co-chair of the Eating Disorders Caucus but also through her proactive support on the most comprehensive eating disorders bill in the history of Congress.  Thank you!

Tuesday, May 1, 2012

EDC Advocate Shares Her Thoughts

"I want to Change the WORLD!"
EDC Advocate Hana shares her thoughts about EDC National Lobby Day. click the below link to be taken to her blog :)

Hana's Blog on EDC National Lobby Day 2012

Monday, April 30, 2012

Reflections on EDC Nat'l Lobby Day

Dear friends and supporters of the Eating Disorders Coalition,

EDC Advocates --working to pass the FREED Act!
In some ways EDC National Lobby Day resembles a wedding celebration. Months and months go into preparing for one day of celebration, details are stressed over, excitement builds, and then the day you’ve been planning for is over and your friends depart and go back to their respective ‘every-day’ lives. And like a wedding, when EDC National Lobby Day is over and advocates depart, they leave with a fire in their hearts, forever changed.

National Lobby Day events began Monday with an evening reception at the Stewart Mott House on Capitol Hill. EDC President Lisa Lilenfeld welcomed EDC Advocates and invited them to enjoy food and drink as they mingled and met new advocates, as well as greeted old friends. Midway into the reception, EDC Policy Director, Jeanine Cogan, introduced the EDC’s newest Policy Team member, Al Guida from Guide Consulting. Al invited each EDC advocate to introduce themselves and also share a few words about what brought them to DC to participate in EDC National Lobby Day. The stories shared around the room were each unique, but all connected in the heartfelt dedication as each advocate described their commitment to being part of the movement that will eliminate eating disorders. We celebrated our commitment to be advocates.

April 26, 2012: EDC National Lobby Day  -- one of best yet. The day began with Basic Training where all first time advocates came together early in the morning to learn more about what it means to be a part of EDC Lobby Day, as well as to help ease ‘nerves’ that tend to come with being on the Hill for the first time.  After Basic Training, the newly trained EDC Advocates merged with veteran EDC Advocates and we melded into one large group of impassioned and powerful voices. The message we shared with Members of Congress and their staff was that: Eating Disorders are serious; There is Hope; Congress CAN make a difference! ~
We headed over to the Capitol for a group photo and then went to the Dirksen Senate Office Building for lunch and the EDC Congressional Briefing, “The Faces of Eating Disorders: Will the Real Person with an Eating Disorder Please Stand Up”. The Congressional Briefing educated Members of Congress and their staff about the fact that eating disorders do not discriminate.  They effect people of all ages, races, ethnicities, genders, classes, sexual orientations and even political parties. Speakers were: Rachel DeYoung, a biracial woman who suffered and recovered from her eating disorder; Sarah Yeung, an immigrant from Hong Kong who developed an eating disorder once she moved to the U.S.; Tracy  Smith, a mom whose daughter Reanna died while waiting for access to treatment; and Dr. Ted Weltzin who specializes in working with men and boys who suffer from eating disorders. The stories were each powerful and left an impact. After the briefing 78 individual advocates from 22 different states, headed out to meet with their Members of Congress and staff, delivering the urgent and heartfelt message that: Eating Disorders are serious; There is Hope; Congress can make a difference by passing the Federal Response to Eliminate Eating Disorders Act (FREED Act).
EDC National Lobby Day concluded with a debrief meeting, hosted by FREED Act champion Congresswoman Tammy Baldwin’s staff. At the debrief, EDC Advocates shared stories from the day’s meetings. This was a notable EDC National Lobby Day as one advocate after another shared the news that their Member of Congress agreed to sign on to the FREED Act ! The FREED Act already has three new co-sponsors (with more to come)! We heard stories of Staff Members who attended the EDC’s Congressional Briefing and were moved to tears because of the stories shared. We heard about a Member of Congress who called an EDC advocate who wasn’t able to come to the Hill for lobby day. And we even had Members of Congress tweeting about their meetings with EDC advocates! TOGETHER WE ARE MAKING AN IMPACT!

EDC Advocate shares her FREED sign
Eventually we had to conclude our day –feet were tired, bellies were hungry, and advocates were in need of rest and reflection. After many hugs, we departed the Hill, ending another EDC National Lobby Day, forever changed. And though we are no longer in person with one another, we remain a collective voice, as afterall we are the Eating Disorders COALITION. As an individual advocate, you are a member of the Coalition and you are now part of a collective voice and movement on the Hill; you are now a part of the movement that will change policy at the Federal level –a daunting task that is only possible because of you. As a member of the Coalition, you now have a way to use your voice in an organized way that will help you fight back against the many insidious ways an eating disorder might have impacted your life. As a member of the Coalition, you are part of a family of advocates who support you, and who are here to help you make a difference in the way eating disorders are addressed in our country. Each of you is a special part of a circle of hope and action, of a meaningful and powerful coalition – and your advocacy need not end simply because EDC National Lobby Day has concluded. ~ We encourage you to stay involved with us: go to the EDC website and sign-up to receive email Action Alerts; friend us on Facebook; send in your picture with your “I stand for the FREED Act because….” signs to; ask your friends, family, your treatment team, etc. to participate in our “Phone in for FREED” campaign (details on our Facebook page)  -- There are many ways for you to continue using your energy, your passion and your voice until the next EDC National Lobby Day and we are happy to help you do so! ~  If any of you have blogged about your experiences, please feel free to share those with us by emailing ; feel free to post your reflections and your pictures on our Facebook page, etc. We encourage you to stay in touch!

This EDC National Lobby Day has left an indelible impact on our hearts. We are reinvigorated because of each of you who took time off from work and school, who spent your hard earned money, and who each gave of your heart to help make this EDC National Lobby Day one of our best yet.

PS: huge shout-out to all our volunteers who make EDC National Lobby Day possible, including our Team Leaders: Matt Wetsel, Eileen Binkley, Gail Schoenbach, Lisa Lilenfeld, Johanna Kandel, Jillian Lampert, Deb Mellk, Alan Duffy, Carmen Cool, and Lisa Hail; Our “boots on the ground” volunteers Emily Suttle and Rachel DeYoung who hand-delivered EDC Congressional Briefing invitations to every single office of the Senate! And thank you to EDC photographer Jim Knapp for taking pictures and posting them on the EDC Facebook page. (We encourage advocates to go to our Facebook page and tag yourself in pictures--please tag only yourself) Finally, special thanks to the Stewart R. Mott House for hosting our reception