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 www.1mind4research.org 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 www.1mind4research.org.

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
tom@fullerandsander.com,
Monty Sander, 707-253-8503
monty@fullerandsander.com

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: http://www.kantorlaw.net/Areas_of_Practice/Eating_Disorders.aspx . 

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 www.kantorlaw.net , call (800) 446-7529, or follow the firm at www.californiainsurancelawyerblog.com .

SOURCE Kantor & Kantor, LLP

Copyright (C) 2012 PR Newswire. All rights reserved

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!

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

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 kmacdonald@eatingdisorderscoalition.org; 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 kmacdonald@eatingdisorderscoalition.org ; 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) https://www.facebook.com/EatingDisordersCoalition Finally, special thanks to the Stewart R. Mott House for hosting our reception http://www.srmfoundation.org/AboutUs.html 

The "K&E Diet" is Wrong

Take a Stand Against the K & E Diet! 

The Eating Disorders Coalition encourages you to contact The Today Show to express your dismay at their recent coverage of the "K & E Diet", a diet that uses feeding tubes to promote rapid weight loss. By giving the "K & E Diet" such prime airtime The Today Show encouraged risky weight loss strategies. Fad diets and rapid weight loss are potentially dangerous. At least 1 in 4 people who goes on a diet develops eating disordered thoughts and behaviors.  Two out of 10 people with anorexia die of the disorder.  This is not a laughing matter.  The tragic reality is that some people suffering from eating disorders die because they can't get the feeding tube they need in order to survive because insurance companies all too often don't cover life saving eating disorder treatment.

We applaud CNN for their appropriate segment (see link below) on the Nasogastric Tubes this afternoon, so let's thank them for shining light on the dangers of this terrible practice which their Medical Ethicist calls, “stupid”. Let's thank CNN and ask The Today Show to follow suit!
http://cnn.com/video/data/2.0/video/health/2012/04/18/nr-feeding-tube-loose-weight.cnn.html

Here's what you can do: 

• Contact CNN and THANK THEM for responsibly addressing this issue: http://www.cnn.com/feedback/ 
• Contact The Today Show and ask that Kathie Lee apologize on-air for calling the dangerous diet trend "genius" (at 5:19 in video -below)
• Contact The Today Show ask them to bring on eating disorder experts to address the dangers of this quick-fix rapid-weight loss diet
• Share with them your personal opinion on why you feel making light of feeding tubes does a serious disservice to those suffering the deadliest of all mental health illnesses, eating disorders and ask MSNBC & The Today Show to feature a segment like CNN -responsibly addressing the dangers of this fad diet.

The Today Show & Kathie Lee/Hoda contact information:

• Kathie Lee & Hoda FACEBOOK page:  https://www.facebook.com/klgandhoda 
• Contact MSNBC (click on TODAY in the dropdown) http://www.msnbc.msn.com/id/10285339/

(Here is Kathie Lee and Hoda discussing the diet: see: 5:14 - 6:38 in video):
 http://today.msnbc.msn.com/id/29054368/    -- the video is graphic in nature (shows medical procedure of NG tube being inserted)

The EDC applauds former Senator Pete Domenici and Gordon Smith for writing this op-ed on mental health parity that appeared in the Washington Post on April 12, 2012. We urge the administration to issue final regulations to implement the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act.

Waiting for mental health parity

By Pete Domenici and Gordon H. Smith, Published: April 12

Every day across the United States, families struggle with the challenges of mental illness or substance abuse. The 68 million Americans with these issues include people of all income levels, all races and all political affiliations. Mental illness does not discriminate.

Often, the difference between being overwhelmed as a family or meeting the challenges head-on and making progress against the illness can be just one factor: access to meaningful health insurance. Even those who think they have quality health coverage can be overwhelmed when a loved one receives a diagnosis of mental illness or is a substance abuser. They discover that their health insurance does not cover needed services or that the out-of-pocket expenses are prohibitive and significantly more than what is charged for physical ailments.

In 2008, Congress passed and President George W. Bush signed the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act. This law, which garnered bipartisan support, requires that large group health plans and Medicaid managed-care plans provide coverage for mental or substance-use disorders on par with the coverage offered for physical ailments. But when any law is passed, the federal government must implement and enforce it to make its benefits and provisions a reality.

President Obama voted for the bill as a U.S. senator, and all indications are that he remains supportive. Yet regulatory action has stalled since 2010. The final rule that would provide clarity to the millions who have a mental illness or substance-use disorder, and to their employers, has not been issued. This has created uncertainty and confusion for employers over what they must cover and when parity applies.

For example, many health insurance plans still refuse to cover lifesaving treatment for eating disorders. Others create discriminatory barriers to care, such as imposing stricter prior-authorization requirements for mental health and addiction treatment than for medical benefits. Sadly, as underscored in a recent report by the assistant secretary for planning and evaluation at the U.S. Department of Health and Human Services, levels of care for evidence-based behavioral treatments, such as residential psychiatric services for children, are being eliminated because of uncertainty about what is required.

The most recent National Survey on Drug Use and Health, published last year, found that fewer than half of the 45.9 million adults with a mental illness receive treatment or counseling and that only 10 percent of the more than 23 million people who need help for a substance-use problem received any specialized treatment in 2010. Even more troubling is the fact that people with either disease have shorter life expectancies than most Americans; a 2006 study put the difference at 25 years.
 
The Obama administration should issue its final regulations to implement the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act. Doing so would allow employers to plan with certainty and stability — and would let families know that help will be there when they need it.