THE PROBLEM WE ARE SOLVING
BARRIERS TO EATING DISORDER HEALING IN THE UNITED STATES
The most recent research estimates that only 10% of people in the U.S. who are diagnosed with an eating disorder will ever receive treatment. This is attributed to the myriad barriers that people with eating disorders (ED) in the U.S. face when they’re in need of care - which can be understood in the following categories: systemic, cultural, healthcare, qualitative, financial, logistic, current, and personal.
Systemic Barriers
In the past, most treatment was primarily researched on and subsequently designed for white adolescent cisgender girls with Anorexia Nervosa
Lack of diverse representation among most treatment providers
Lack of disability accommodations in most environments
Explicit and implicit biases including fatphobia, transphobia, ageism, racism, and sexism among many eating disorder providers
Weight requirements in DSM-5 diagnosis for Anorexia Nervosa and ARFID (Avoidant/Restrictive Food Intake Disorder)
Weight discrimination in many admission criteria for higher levels of care
Many weight goals adjusted based on sex
Gendered admission criteria at many treatment centers
Many treatment plans and medical records based on legal sex
Lack of weight-bearing furniture and size-inclusive medical equipment at many facilities
Lack of research about eating disorders among or including marginalized communities and identities
Lack of eating disorder research funding
Lack of federal funding for eating disorders compared to other psychological diagnoses
Lack of lobbying regarding implementation and enforcement of more healthcare policies on eating disorders
cultural Barriers
Social stigma around seeking mental healthcare
Glorification of thinness
Fatphobia everywhere (e.g. schools, media, parenting, etc)
Toxic masculinity’s impact on some men’s ability to acknowledge their own struggle or seek help
Lack of accurate representation in a lot of media
Lack of awareness of eating disorders within a lot of mental health advocacy
Financial Barriers
High prevalence of people experiencing poverty and low-incomes
Most eating disorder treatment is exorbitantly expensive
High health insurance deductibles
High out-of-pocket-maximums (OOPMs)
High co-pays
Difficulties paying bills/rent while not working to go to treatment
Lack of credit to consider going into debt for treatment
logistical Barriers
Geographic barriers: Many people seeking eating disorder treatment live in locations that are far from where treatment centers and/or in-person outpatient providers operate.
Difficulty paying for out-of-state & in-state travel to/from treatment
Difficulty paying for and organizing local transportation
Language barriers
It can be hard to find providers because there is no authoritative, centralized database of eating disorder providers.
Most virtual care requires reliable technology and privacy
Inability to take time off of work to go to treatment
Inability to find and pay for childcare to go to treatment
Inability to find and pay for pet care to go to treatment
healthcare Barriers
Understanding health insurance is hard.
Insurance won’t cover every level of care.
Securing health insurance coverage in the U.S. can be like jumping through hoops.
There are many unfair denials of health insurance coverage for clinically appropriate treatment.
There are many premature discharges that are often determined by subjective evaluations by insurance representatives who may have never met the client.
Insurance only covers “evidence-based care,” but most existing evidence is outdated and was carried out based on inaccurate stereotypes of who someone with an eating disorder is.
There is often a lot of distrust between insurance and providers.
There is currently a lot of prioritization of treatment for substance use disorders / treating people with co-occurring disorders, but eating disorder treatment is often neglected, forgotten, or de-prioritized despite clinical and personal impacts.
Many psychiatry/behavioral health hospitals and trauma treatment centers don’t treat eating disorders
Many Primary Care Physicians (PCPs)/General Practitioners (GPs) and Family Doctors don’t screening for eating disorders at appointments.
Health insurance authorizations often turn into emergencies when clinical presentations change rapidly.
Many Intensive Care Units (ICUs) require medical instability without considering other factors.
Many outpatient providers don’t take insurance.
There are 28 million uninsured people in the U.S. alone.
There are short windows of open enrollment for ACA (Medicaid/Medicare).
There is usually a requirement of U.S. documentation for health insurance which leaves many immigrants without coverage.
Most government funded insurance only covers inpatient treatment, outpatient care, and occasionally partial hospitalization/intensive outpatient treatment if they’re based in a hospital.
There is a law that prohibits government funds from paying for facilities that have 16 or more beds.
There is a law prohibiting government funds from paying for facilities that don’t have 24-hour nursing.
Medicaid plans sold as different names often mislead planholders.
A general lack of eating disorder knowledge among utilization review/authorization staff /doc-to-doc reviewers
qualitative Barriers
Lack of ability to treat most co-occurring mental health issues
Lack of eating knowledge in most medical communities
Lack of eating disorder knowledge in most clinical communities
Lack of coordination at many level of care (LOC) transitions
Lack of family involvement in a lot of care/treatment
Sometimes abusive family members are required to be involved in care
Pathologizing of many dietary restrictions
Lack of standardized treatment protocols
Inaccurate / biased diagnoses by many treatment centers
Many eating disorder providers commonly lack understanding of sports / athletics
Many eating disorder providers lack understanding of working with pregnant clients
Binge Eating Disorder is often not taken seriously.
Religious dietary needs often go unmet in treatment centers
Lack of outcome definitions for many treatment providers/centers
Not enough treatment centers
Waitlists for all levels of care
Medical liability fears among many treatment centers
Provider to client ratios are inadequate considering needs of patients
Provider burnout
Eating disorder specialist certifications are expensive and require frequent upkeep that is also expensive
covid-19 as a Barrier
high levels of job & insurance loss
vaccination requirements for treatment
discomfort traveling
Personal barriers
Emotional state: shame, denial, bootstrap mentality
Lack of family or social support
The difficulty of healing in a culture obsessed with thinness, dieting, and fitness
Fear of, or resistance to, giving up the eating disorder
Inaccurate self-diagnosis
Terror of surrendering freedoms for treatment
Past treatment trauma
Clients’ lack of trust in providers re: profit