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The Eating Disorders
Dream Bill
Model Legislation for
Research, Treatment, Education & Prevention
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Washington, D.C.
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What is the Dream Bill?
The Eating Disorders Dream Bill is a set of recommendations for national
public policy in the United States. Leaders in eating
disorder research, treatment, and prevention drafted the
recommendations between 2004 and 2005. The EDC is working for the adoption
of the dream bill recommendations.
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The Eating Disorders
Dream Bill
Model Legislation for
Research, Treatment, Education & Prevention
Policy Recommendations for Research
Priority 1. Knowing the numbers. National
epidemiological studies are needed for determining prevalence, incidence,
and correlates of all eating disorders (Anorexia Nervosa, Bulimia Nervosa,
Binge Eating Disorders and Eating Disorders Not Otherwise Specified).
Epidemiological studies of anorexia nervosa, bulimia nervosa, binge eating
disorder, and sub-clinical variants of these disorders would enable public
health officials and various professional organizations to cooperate in
planning effective strategies for outreach, treatment, prevention,
research, and training. Presently, there have been no epidemiological
studies explicitly designed to examine eating disorders in the United
States population. Speculation about rates of eating disorders increasing
in children, older females, and males, as well as continued uncertainties
about eating disorders in different racial and ethnic groups requires
further study. The government should be encouraged to add eating disorders
questions to national health monitoring surveys, like the National Survey
of Family Growth, the Behavioral Risk Factor Surveillance System, the
Youth Risk Behavioral Surveillance System and other surveys.
Knowing the death rates.
National epidemiological studies are needed for determining the natural
history, morbidity, and mortality of all eating disorders (Anorexia
Nervosa, Bulimia Nervosa, Binge Eating Disorders and Eating Disorders Not
Otherwise Specified). There is a particular need for clearer information
about mortality rates, especially for anorexia nervosa. This project
could be conducted by the Centers for Disease Control and Prevention (CDC)
in collaboration with the Eating Disorders Coalition and the Academy for
Eating Disorders. This research would yield information that would be very
useful in determining and paying for adequate levels of healthcare and in
helping patients and families to cope with eating disorders.
Knowing the economic of costs of
eating disorders. Disability Adjusted Life Years and
other statistics about the costs of eating disorders are unknown. The
World Health organization, CDC, and other agencies should conduct an
economic analysis of the costs of eating disorders in the United States,
including years of productive life lost, missed days of work, reduced work
productivity, costs of medical/psychiatric treatment, prescriptions
medications, hospitalizations, costs of medical and psychiatric
co-morbidities, etc. Such a report could also estimate the cost savings of
preventing eating disorders cases and of early detection if it can be
argued that early detection improves course and outcome.
Creating a national database. There
is considerable interest in the notion of a national database for eating
disorders. Having accurate statistics on eating disorders would meet the
needs of the broadest of audiences, especially as researchers, clinicians,
policymakers, and the lay public have been asking for concrete statistics
for years. If this initiative could be passed, one of the requirements
could be mandating the collection of mortality data, as well as the
creation of a national data clearinghouse (which would allow for key
indicators related to eating disorders research to be collected in one
location). Additionally, the trend towards public disclosure of data from
research studies, at least in the service sector (U.S. Department of
Health and Human Services), may lend support to the notion of a data
archive as well.
Priority 2. Establish Institutional
Training Centers. There is also interest in the concept of an
integrated system of Centers of Excellence for eating disorders, which
could provide training opportunities for research, as well as coordinate
the development of research infrastructure nationwide. Similar programs
have been established for other disorders and diseases. Such a structure
would allow for a more sustained and integrated research program
nationwide, which could also facilitate multi-site studies for low
prevalence populations (e.g., anorexia nervosa).
Priority 3. Treatment Research.
The evidence base for treatment of Anorexia Nervosa is weak. Several
treatments for Bulimia Nervosa have demonstrated efficacy, but
approximately 30% of sufferers of Bulimia Nervosa are not helped, and a
majority of patients continue to be symptomatic after treatment.
Consequently, research examining the efficacy of treatments for eating
disorders is needed, as is research on the costs of not providing adequate
treatment. Funds are critically required for dissemination of treatment
research findings as efficacious treatments often remain confined to
university based programs. The transition from efficacy to effectiveness
is critical in this field. Researchers and therapists should work together
to integrate theory, research, and practice. Research findings on
effective treatment should be disseminated throughout the treatment
communities, including graduate schools involved in training therapists.
Priority 4. Improve the Nosology of Eating Disorders.
The current diagnostic scheme exemplified by the Diagnostic and
Statistical Manual of Mental Disorders (DSM-IV) has not been
supported by recent empirical research and also is questionable in terms
of its applicability to children, males, and minority populations. The
majority of individuals seeking treatment receive the residual diagnosis
of Eating Disorders Not Otherwise Specified (EDNOS). There is thus a
pressing need to refine our classification system and develop reliable and
valid means of assessment. Such research is essential for the stimulation
and improvement of national and international research aimed at
identifying, treating, and preventing eating disorders.
Priority 5. Prevention in school-, community, and
home-based settings. A large body of outcome research
indicates that school-based curricular interventions may have very
positive effects while the program remains in effect. Given these
short-term benefits and given the successes produced by longer-term and
more comprehensive programs for prevention of cigarette smoking and other
drug use, there is a need for the development and evaluation of more
multidimensional, ecologically-oriented programs to reduce risk factors
for eating disorders and to promote resilience factors (many of which
would likely reduce other health problems). There is a need for preventive
interventions working with children and adolescents to be as resource and
time efficient as possible, especially when working in school settings.
New research is needed to determine how to design interventions that
integrate both eating disorders and overweight prevention and to test the
effectiveness of these integrative preventive interventions.
Specific research ideas to be funded.
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Biological research is needed to determine the biological,
psychosocial, and behavioral risk factors that might appear in early
childhood.
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Longitudinal outcome research should include observation of
children with normal eating and exercise behaviors who later progress into
psychopathology.
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Prevention research on what programs are most effective for
preventing the onset of eating disorders symptoms.
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Co-morbidity of eating disorders and other health risk
behaviors should be researched and the findings should be integrated into
education and prevention campaigns. Eating disorders appear to sometimes
co-exist with underage drinking and alcohol abuse, smoking, and other
health risk behaviors.
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There are a number of points of overlap between eating
disorders and overweight. New research is needed to determine how to
design preventive interventions that integrate both eating disorders and
overweight prevention and to test the effectiveness of these integrative
preventive interventions.
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Overweight youth are at greater risk of developing an eating
disorder or disordered weight control behaviors, and binge eating
disorder, which affects a subset of overweight people, can contribute to
further weight gain and more severe obesity. Further research is needed
on overweight treatment efforts to address how eating disorders affect
this subset of overweight people and their efforts to develop healthful
relationships with food, physical activity, and their bodies.
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Policy Recommendations for Education and
Prevention:
1.
Education and Training for all Health Professionals.
All those who receive training in the health professions, including but
not limited to: family and primary care physicians, obstetricians,
pediatricians, dentists, nurses, mental health specialists, dieticians,
physical therapists, athletic trainers, cardiovascular specialists, should
be trained to identify and appropriately address eating disorders.
2.
Education and Training for School/Higher Education
Professionals. All those who work in the education
professions, including but not limited to: school teachers,
college/university professors, school nurses, school aides, community
liaisons, cooks, dieticians, social workers, counselors, coaches, athletic
departments, and organizations, should be trained to should be trained to
identify and appropriately address eating disorders.
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Educating the public. Create and fund national
Public Service Announcements (including television, radio, and via
printed materials) for eating disorders awareness and prevention.
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Obesity and eating disorders addressed in tandem.
Legislation and other policies to fight obesity should also address
eating disorders. The IMPACT ACT (S.1325) is an excellent example and
serves as a precedent for addressing obesity and eating disorders in
tandem.
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Partnerships. Public, private and community
entities should be encouraged to work together to promote eating
disorders awareness and prevention.
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Warnings on drug labels. The diet and
pharmaceuticals industries should be required to include warning labels
on their ads, products, and Web sites for products that are linked to
eating disorders.
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Additional steps to be taken in places of education:
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School personnel including: guidance counselors, coaches, social
workers, nurses, teachers, principals, janitors, etc. should be
trained to identify signs and symptoms of eating disorders. Just
like school personnel are trained to spot kids using drugs or alcohol,
so should they be trained to recognize the signs/symptoms of eating
disorders.
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Every college campus should have an eating disorders specialist
and resources to assist those affected by eating disorders –including
support groups.
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Students through grade 12 may not be expelled or otherwise
punished academically for having an eating disorder. In higher
education a student should be given a leave of absence to obtain
treatment, not expelled from their academic institution –expulsion
can negatively affect student loans and scholarships.
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Institutions of higher education should establish curriculum on
eating disorders.
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Mandatory curriculum on eating disorders for those seeking degrees
in the health (both physical and mental) field must be established.
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Education about marketing. Public policy
should support the creation of awareness programs that address marketing
–not only to adults, but children- addressing harassment, discrimination
and bullying based on body size and weight.
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Policy Recommendations for Treatment
1.
Universally accepted criteria.
Public and private policy should support establishing consistent and
comprehensive universally accepted criteria for medical necessity for
eating disorders.
a.
All providers/insurers should use the Standards of Care written by
the American Psychiatric Association.
b.
Determination of medical necessity should be made by treatment
professionals providing direct service to the consumer.
c.
Standardized terminology and definitions for eating disorders
should be utilized among treatment centers, insurance companies, treatment
teams, consumers.
d.
All decision makers (reviewers and supervisors, insurers and
managed care companies) should be required to complete eating disorders
training. Professional development is necessary for insurance company
employees and for treatment professionals, especially in those in remote,
non-urban areas of the country. The role of educating parents should be
included in professional development programs.
2.
All Americans deserve access to care.
Insurance reimbursement. Patients with eating disorders should have
insurance cover treatment.
a.
Treatment should be linked to severity and type of illness, rather
than what is allowed by an individual’s insurance policy.
b.
Residential treatment for eating disorders should be included in
all insurance benefits coverage.
c.
The level of care should be appropriate to patient, this is known
as the continuum of care and includes:
i.
Inpatient
ii.
transitional living/residential
iii.
outpatient or PHP or IOP
iv.
Settings appropriate to patient (age, sex, etc.)
d.
Duration and level of treatment should be based on clinical data
not arbitrary insurance decisions.
e.
All treatment modalities should be covered, including but not
limited to:
i.
Family, individual, group therapy
ii.
Nutrition counseling
iii.
Psychology, psychiatry, pediatrics, adolescent medicine, internal
medicine and other relevant medical specialties
iv.
Body Image (movement/art/expressive therapies)
v.
Complimentary medicine
f.
Case management of all cases
g.
Staffing must to be adequate to meet patient needs
h.
Eating Disorders are a biopsychosocial disorder and require
biopsychosocial treatments.
i.
Programs are needed for patients with serious comorbidity (alcohol,
drug, trauma)
j.
Educate patients and families about options for care
i.
Types of treatment available
ii.
Appropriate Settings
iii.
Accountability/outcomes
k.
Culture of Care from service providers
i.
Understand these conditions as illnesses, not moral flaws
ii.
Stop blaming the victim
iii.
Treat these illnesses with equal seriousness and compassion as
medical illnesses such as cancer
iv.
Convey that treatment helps, that there is hope.
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