Advocates Push for More Research Into Eating Disorders

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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!

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

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

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

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

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

SAMHSA at 20: From Hopelessness to Recovery and Prevention

BEHAVIORAL HEALTHCARE

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.

• Trends
• Strategy
• Law & Policy
• Populations
• Healthcare Reform


Ron Manderscheid, PhD
Exec Dir, NACBHDD
rmanderscheid@nacbhd.org
V: 202-942-4296; M: 202-553-1827
The Voice of Local Authorities in the Nation's Capital!

Parity – Patriots Continue the Fight

 On September 18^th, 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 9^th 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: www.parityispersonal.org  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: www.eatingdisorderscoalition.org

CALLING ALL EDC ADVOCATES IN THE LOS ANGELES AREA! ATTEND THE FIELD HEARING SEPTEMBER 18th

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:

Add Your Signature!

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

http://www.thepetitionsite.com/654/724/598/disney-dont-promote-unhealthy-body-images-to-children/?z00m=20403315

• 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!