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News 2007
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EDC Annual Meeting: More
Briefings, More Outreach in 2008
WASHINGTON November 2007 - The leaders of the Eating Disorders Coalition are
announcing plans for 2008 that include three briefings, two EDC Lobby Days, and
a new commitment to growing the advocacy organization.
Meeting in Philadelphia, the EDC Board of Directors agreed to plans that
include an educational briefing at the U.S. Capitol during National Eating
Disorders Awareness Week in February. The briefing will include EDC Vice
President Cynthia Bulik, a leading researcher and psychologist and former president of the Academy
for Eating Disorders. The briefing will be free and open to the public. The
Coalition will host EDC Lobby Days later in the year, but not in February.
Directors also agreed to strengthen the Coalition's relationships with
member organizations nationwide.
"We want to support our members by participating in their conferences and
seminars and letting everyone know what's happening in Washington," says EDC
President Kitty Westin.
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New Study on Eating
Disorders: Research Participants Needed!
A study is being conducted for a Master’s thesis at George Washington
University concerning participation in lobby days of the Eating Disorders
Coalition for Research, Policy and Action. If you are a self-identified
eating disordered individual, or self-identified eating disordered
individual in recovery, over the age of 18 who has participated in at least
one of the lobby days hosted by the Eating Disorders Coalition, and are
willing to discuss your lobbying experience, then please contact Geneva
Murray, Masters student at George Washington University, at lobbyresearch@yahoo.com.
There will be no monetary compensation for participation in this study.
EDC:
Federal Rules Hinder Research on Eating Disorders
WASHINGTON November 2007 - The Eating
Disorders Coalition is urging federal officials to adopt new rules in order
to promote research on prevention and effective treatment. At an Oct. 22
hearing in Washington, EDC Executive Director Marc Lerro pleaded with
officials from the
National
Institutes of Health to adopt guidelines proposed by the Academy for
Eating Disorders. The proposed guidelines would promote federal funding of
eating disorder research by revising the current process of peer review.
 "$21
million is not enough for the 9 million Americans who suffer from the
disabling and sometimes deadly effects of eating disorders," Lerro stated.1
"The EDC does not want to ask Congress to determine research priorities, but
the current peer review barriers are preventing our researchers from getting
the support that they need."
According to sources at the National
Institute of Mental Health, approximately $21 million was spent on eating
disorder-related research in 2006.
Currently, the NIH peer review rules meant
to prevent conflict of interest restrict many of the nation's leading eating
disorder researchers from reviewing proposals. Review groups often have
none or only one person with eating disorder expertise. The
Academy for Eating Disorders has proposed two alternatives to the NIH
Peer Review Working Group that is advising NIH Director Elias A. Zerhouni, M.D. The NIH is likely to revise its
current peer review process in 2008 based upon feedback it is now
collecting.
"Federal research for eating disorders is
desperately under-funded." Lerro said. "It can't come in time to help people
like Jamie Lynn Harast, who died in January, and who told her mother that
fighting alcoholism was easy compared to fighting bulimia."
Lerro noted that the only federal report on
eating disorder treatment efficacy, published by the Agency for Healthcare
Research and Quality (AHRQ), suggested several specific targets for future
research. A copy of the report is linked to the
EDC's Reports & Information Web page.
 Susan
Kayne, communications director for the
National Eating Disorders Association, presented a detailed description
of the Academy's proposed changes for peer review. The first recommendation
calls for at least two reviewers with clear expertise in the field. The
second alternative is a novel two-stage review process in which a brief
summary of each proposal is sent to a large number of researchers who
provide a score. The top-rated proposals would then be reviewed by a panel
that includes at least two eating disorder experts.
The NIH recently granted four awards to study adult
Anorexia Nervosa. (Information about federally funded clinical trials can be
found online at
clinicaltrials.gov.) Still, the EDC and other groups are pressing for a
faster government response on eating disorders.
Lerro said, "We were clearly heard. The
Academy created a thoughtful solution. NEDA presented it. And the EDC made
it real."
Photo: National Institutes
of Health (NIH)
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Two New
Board Members Join EDC
WASHINGTON November 2007 - The
Eating Disorders Coalition for Research, Policy & Action welcomes two new
members to the board of directors. Katherine Brown, Ed.D., and Gail Kennedy
will join the leadership of the Washington-based public policy organization.
Dr. Katherine Brown of North Carolina will
fulfill the term of Dr. Steve Emmett, who stepped down earlier this year.
The term ends December 31, 2008. Dr. Brown holds a Doctor of Education
degree from National-Louis University and a Master of Science in Education
from Purdue University.
Eating disorder activist Gail
Kennedy will fulfill the term of Jessica Weiner, ending December 31, 2008.
Kennedy has an extensive corporate background, having worked for Coca-Cola
in Atlanta and Ernst & Young in New York, among others. She is a
resident of Washington, D.C. and has been involved in eating disorder
advocacy on Capitol Hill. |
EDC Keeps
Mental Health Parity Moving Forward
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WASHINGTON July 2007 - Former First Lady Roslyn Carter, advocating for
mental health parity, meets with (l-r) EDC Policy Director Jeanine Cogan,
EDC President Kitty Westin, and Congressman Patrick Kennedy before a hearing
of the House Education and Labor Committee. Below, mental health champions
prepare for the next meeting.
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EDC Director Announces
Departure
WASHINGTON September 2007 - EDC
Executive Director Marc Lerro will step down at the end of 2007 after five
years with the nation's eating disorder advocacy organization. The EDC board
has begun an executive search.
"It just seemed like the right
time," Lerro said. Since late 2002, the EDC's organizational membership has
grown from 12 to 35 groups. The coalition opened an office across from the
Capitol and hosted two national conferences. The coalition conducted a
national campus speaking tour, created a memorial quilt, and launched
initiatives with the insurance industry, fashion designers, and government
officials.
Lerro will focus on a new
public policy program in the Washington area, but plans to remain involved.
"I love this organization. I won't be far away."
Rep. Ramstad Retiring from
Congress:
EDC Award Recipient Championed Mental Health
WASHINGTON September 2007 - Rep. Jim
Ramstad (R-MN) announced that he will not seek reelection when his current
term ends.
Congresswoman Bono (R-CA)
Fighting Eating Disorders and Obesity
WASHINGTON July 2007 - Congresswoman Mary
Bono (center) has renewed her efforts to combat obesity and eating disorders
with national legislation. She is working with the Eating Disorders Coalition,
the Girl Scouts, and other groups to promote healthy weights and behaviors and
to fund professional training for educators and health care professionals.
Pictured: EDC Policy Director Jeanine Cogan, Rep. Bono, and eating disorder
advocate Kathleen MacDonald.
NEW EDC Member
Organization
EDC Board Welcomes the International Association of
Eating Disorders Professionals Foundation
WASHINGTON August 29, 2007 -
The EDC welcomes a dynamic new member organization for 2007-2008, the
International Association of Eating Disorders Professionals Foundation,
IAEDP.
IAEDP is recognized for its excellence in providing
first-quality education and high-level training standards to an
international multidisciplinary group of healthcare treatment providers and
helping professionals who treat the full spectrum of eating disorder
problems. IAEDP programs are designed by treatment professionals for
treatment professionals working in therapeutic settings.
Each year, IAEDP hosts a professional symposium attracting
400 eating disorder specialists. Symposium 2008 is April 3-6 at Walt
Disney's Dolphin Resort in Orlando, Fla.
IAEDP
PO Box 1295
Pekin IL 61555-1295
1-800-800-8126, iaedp.com
EDC Welcomes the Newest Coalition Member:
Maudsley Parents
The EDC board voted unanimously in
April to approve 2007 membership for Maudsley Parents.
Mission: We believe
that families of eating-disordered children should be aware that
family-based treatment, also known as the Maudsley approach, is among their
treatment options. Parents who opt for Maudsley treatment deserve practical
information, support, and encouragement, and our goal is to provide these
resources.
From Their Website:
The Maudsley
approach is an evidence-based treatment for eating disorders. In Maudsley
treatment, parents play a key role in helping their child recover. In the
first phase of treatment, parents are encouraged and empowered by the
therapist to normalize their child’s eating while providing compassionate,
non-judgmental support. Once the child’s physical health is restored, the
family works with the Maudsley therapist to return control over eating to
the recovering child. In the final phase of treatment, the focus shifts to
helping the child establish a healthy adolescent identity. Research shows
long-term outcomes with Maudsley treatment are promising.
Outreach
to Managed Care
EDC Meets with Managed Care Companies
 WASHINGTON
March 29, 2007 - Medical directors for treatment programs and for managed
care companies met this week in Washington to talk about improving access to
effective care for people with eating disorders. The meeting was organized
by the Eating Disorders Coalition and the Association for Behavioral Health
and Wellness.
The EDC invited medical directors from three leading treatment
programs to describe their successes and challenges with managed care. Also
participating was the chair of a task force on accreditation of eating disorder
programs. ABHW invited medical directors from three managed care organizations to
participate in the discussion. ABHW member organizations provide an array of
services related to mental health, substance abuse, employee assistance, disease
management, and other health and wellness programs to over 110 million people in
the public and private sectors.
The meeting focused on
uniform criteria
for medical necessity. The goal was to discuss improving therapeutic outcomes for the women and men seeking treatment for
anorexia, bulimia, and eating disorders not otherwise specified. Binge eating
disorder was also discussed.
The participants were physicians, clinicians, and
administrators with years of eating disorder experience, who came together in an
effort to engage both payors and providers in a discussion to improve the
quality, efficiency, and availability of clinical services for these disorders.
One participant described the meeting as highly collaborative and said there
were wide areas of agreement. “This was a good beginning.”
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National Household Survey
Eating Disorders Often
Untreated, Often Impair Lives
WASHINGTON January 29, 2007 - The
first nationally representative study of eating disorders in the United
States appears in the February 2007 edition of Biological Psychiatry.
The National Comorbidity Survey Replication (NCS-R) is a nationally
representative survey of the U.S. population that was administered
face-to-face to a sample of 9,282 English-speaking adults ages 18 and older
between February 2001 and December 2003.
(Right: Researcher James I. Hudson, photo by McLean Hospital.)
Among the results:
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Lifetime
prevalence of individual eating disorders is 0.6-4.5%.
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Lifetime prevalence of anorexia nervosa
is .9% in women, .3% in men.
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Lifetime prevalence of bulimia nervosa
is 1.5% in women, .5% in men.
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Lifetime prevalence of binge eating
disorder is 3.5% in women, 2.0% in men.
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Eating
disorders frequently impair the sufferer's home, work, personal, and
social life.
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Binge eating is more common than
anorexia or bulimia and is commonly associated with severe obesity.
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Eating
disorders display substantial comorbidity with other mental health
disorders.
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While eating disorders often coexist
with other mental health disorders, eating disorders often go undiagnosed
and untreated. A low number of sufferers obtain treatment for the eating
disorder.
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Researchers found a surprisingly high
rate of anorexia and bulimia among men, representing approximately one
fourth of the cases of each disorder.
The EDC points out that survey included
people 18 and older, which would exclude children and teens struggling with
the disorder. Also, the survey authors note that they may have missed
sufferers with severe anorexia, regardless of age. The EDC notes that the
actual percentages of people with eating disorders may be higher than the
study's findings.
Biological Psychiatry,
"The Prevalence and
Correlates of Eating Disorders in the National Comorbidity Survey
Replication," pages 348-358, by James I. Hudson, Eva Hiripi, Jr.,
Harrison G. Pope, and Ronald C. Kessler.
The complete
article is available at
www.sciencedirect.com ($30)
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Mental Health
Parity
EDC President Kitty Westin Testifies in Congress
WASHINGTON March 27, 2007 -
The powerful House Ways and Means Committee heard from a powerful advocate
for mental health parity: Kitty Westin. The EDC president was the only
speaker on a specific condition during a committee meeting that focused on
mental health parity. While the room was filled with mental health
advocates, it was clear that eating disorders demonstrate the need for the
widest possible coverage. Right: EDC President Kitty Westin
testifying in Congress. Below right: (l-r) EDC's Geneva Murray, Dr. Jeanine
Cogan, Kathleen MacDonald, Kitty Westin, and Marc Lerro unite behind
Congressman Ramstad (R-MN). Below left: Ways and Means Committee members.
Photos by Geneva Murray.
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Congress: Two Bills, One Goal
WASHINGTON March 6, 2007 - Two bills have
been introduced in Congress in an effort to provide access to care for
people with mental health conditions such as eating disorders. The bills
promote mental health parity, in which some insurance policies would be
required to cover treatment for eating disorders equal to the coverage
offered for medical conditions. The Senate bill and the House bill vary, but
the Eating Disorders Coalition supports both.
Read more. |
EDC Welcomes New
Member Organization
Eating Disorders Information Network Joins EDC; 33rd Group to Join for 2007
A pioneering eating disorders
program based in Georgia recently joined the EDC, bringing the Coalition
membership to a record 33 organizations. The EDC board voted unanimously in
March to approve 2007 membership for the Eating Disorders Information
Network.
EDIN is committed to addressing
the problem of eating disorders on a societal level. We are devoted to
preventing eating disorders, increasing public awareness of the personal,
familial, and cultural/media pressures which contribute to eating disorders,
and helping those who are already suffering to find
the therapeutic services they need.
We serve as a
comprehensive resource and referral guide for those seeking help, gathering
and distributing information about available treatment options in the
Atlanta area. Because we believe that those who are recovering and who have
recovered from eating disorders have expertise about the healing process, we
offer a number of forums for them to "give back" to others: our quarterly
magazine, The ReSister; our Speakers Bureau; and other activities throughout
the year which utilize their many talents. Our School Outreach program sends
speakers to school to address children, parents and teachers about dieting,
body image, and self-esteem. We also speak out about media images which
promote anorexic body ideals and empower people to express their anger
through letter-writing campaigns. This web site is our way to spread the
message to an even wider audience.
Visit EDIN at
www.edin-ga.org.
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Outreach to the Fashion
Industry.jpg)
EDC Takes Action to Curb Eating
Disorders in Models
WASHINGTON
February 5, 2007 - The Council of Fashion Designers of America and eating
disorder experts met in New York today. The EDC joins
NEDA and AED in
calling for more action on eating disorders in the fashion industry.
Click here for today's press release.
WASHINGTON
February 2, 2007 - The Eating Disorders Coalition is taking action to curb
eating disorders among models and to promote healthy weight in fashion. EDC
President Kitty Westin and Vice President Cindy Bulik are meeting with the
Council of Fashion Designers of America (CFDA) in New York to urge changes
in a multi-billion dollar industry that promotes images of unhealthy weight
and triggers eating disorders among fashion models.
The EDC is working closely with the
National Eating Disorders Association (NEDA.html) and the Academy for Eating
Disorders (AED) to change fashion industry practices. Both NEDA and AED are
members of the Coalition. NEDA has reacted to fashion industry's initial
guidelines with
a press release and is prepared to take further action. AED has
issued
guidelines for the fashion industry, which the EDC supports. EDC
staff and board members have been speaking with reporters nationwide to urge
self-regulation by fashion leaders and will meet with CFDA during Fashion
Week, Feb. 2-9.
EDC officers have expressed hope that the
fashion industry can change its unhealthy practices without federal
intervention. Westin says, "It's possible that Congress or an executive
branch agency could take action, but we hope that won't be necessary."
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NATIONAL EATING DISORDERS AWARENESS WEEK
Congressional Record
[Page: E441]
SPEECH OF
HON. PATRICK J. KENNEDY
OF RHODE ISLAND
IN THE HOUSE OF REPRESENTATIVES
THURSDAY, MARCH 1, 2007
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Mr. KENNEDY. Madam Speaker, I would like to take this
opportunity to recognize National Eating Disorders Awareness Week. While we
know that millions of people are affected by eating disorders, which include
anorexia nervosa, bulimia nervosa, and binge eating disorder, the exact number
is unknown because there is no accurate data collection of these diseases. It
is time to take action on eating disorders, a mental and physical health issue
that has had little public support and is often misrepresented in popular
media.
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Each year, hundreds of Americans die as a direct result of an
eating disorder, which has the highest mortality rate of any mental illness.
Several thousand more have eating disorder symptoms listed as contributing
conditions to their deaths. For those who live with the condition, eating
disorders frequently impair the sufferer's home, work, personal, and social
life. Health consequences such as osteoporosis (brittle bones),
gastrointestinal complications and dental problems are significant health and
financial burdens throughout life. At any given time, 10 percent or more of
late adolescent and adult women report symptoms of eating disorders.
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Just last month, a nationally representative survey of the
U.S. population, funded in part by the National Institute of Mental Health,
reported that eating disorders often occur with other mental health disorders,
yet eating disorders may go undiagnosed and untreated. The researchers,
therapists, and families of the Eating Disorders Coalition are working to
advance the Federal recognition of eating disorders as a public health
priority. I applaud the efforts of the National Eating Disorders Association
to call attention to these important issues during National Eating Disorders
Awareness Week, February 25 to March 3, 2007.
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Australian MP Anna Burke Tours US to Learn About
ED Programs
WASHINGTON January 16, 2007 - An Australian Member of Pa.jpg) rliament is
touring the United States to learn about eating disorder treatment,
research, and public policy. Anne Burke of the Australian Labor Party
stopped in Washington to meet with EDC Executive Director Marc Lerro,
Representative Patrick Kennedy (RI), and Senator Patty Murray (WA). Earlier
in the week, Burke visited programs in New York and Philadelphia.
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