How to make eating disorder treatment equitable

Presented by:

• Ashlee Knight, Senior Program Director at Project HEAL
• Eunice Feng, Treatment Access Program Manager at Project HEAL
• Alexa Grayson, Insurance Navigation Program Manager at Project HEAL
• Safiya McHale, Clinical Assessment Program Manager at Project HEAL

Every single person with an eating disorder deserves access to eating disorder treatment. Yet, just a fraction of people diagnosed with eating disorders receive treatment. 

This is partly because getting a provider to approve treatment is extremely difficult, even with insurance. Furthermore, those with larger bodies or a BMI above the “normal” range are often denied coverage even if they present with similar symptoms and medical complications as those with smaller bodies. 

However, insurance is far from the only barrier to eating disorder treatment. There are a variety of systemic, cultural, financial, logistical, personal, and healthcare barriers which primarily affect access to treatment for marginalized and minority populations, even when they are willing.

A primary causation of these barriers is the media-perpetuated stereotype that it’s only thin, affluent, white women. Unfortunately, this stereotype is deeply ingrained in the healthcare system, much to the detriment of those that don’t fit “the brief.” 

Let’s look at these barriers to demonstrate how important equitable eating disorder treatment is, as well as the work Project Heal does to help break down these barriers.

Barriers to eating disorder treatment

Recent research estimates that only 10% of people in the U.S. diagnosed with an eating disorder will ever receive treatment²—a number that is considerably lower than those with other types of mental health disorders.³ This is attributed to several treatment barriers people living with eating disorders face when they need help. 

Systemic barriers

There are so many systemic barriers to eating disorder treatment, including, but not limited to:^1,2

• Historically, most eating disorder treatment research was designed for and carried out for white, adolescent, cisgender girls with anorexia nervosa. Plus, a lack of research on eating disorders in marginalized communities and identities.
• There is a lack of funding for eating disorder research and federal funding for eating disorders compared to other psychological conditions.
• Lack of diverse representation among most treatment providers. For example, most registered dieticians are white women, with only approximately 3% of dieticians identifying as black.¹
• Implicit and explicit biases such as transphobia, fatphobia, racism, sexism, and ageism are among many eating disorder providers.
• Weight discrimination, gendered admission criteria, and lack of disability accommodations at many treatment centers.
• Outdated weight diagnostic criteria in the DSM-5 for diagnosis of anorexia nervosa and avoidant/restrictive food intake disorder.
• Distinct lack of size-inclusive and weight-bearing furniture at many treatment facilities.

Healthcare barriers

There is no denying that there is health inequity in the United States, with the main drivers of health inequities including income and wealth, employment, education, and social environment, amongst others.⁴ Health inequity can lead to a myriad of barriers to accessing eating disorder treatment, including, but not limited to:

• Not only is understanding health insurance hard, but securing coverage is difficult, and even when you have insurance, it won’t cover every level of care.
• Subjective evaluations by insurance representatives that have never met clients or have expertise in eating disorders can lead to premature discharges from treatment.
• Insurance typically only covers evidence-based care, but this doesn’t account for outdated research based on inaccurate eating disorder stereotypes.
• Lots of outpatient providers don’t take insurance.
• There is typically a requirement for U.S. documentation for health insurance, meaning immigrants can’t get coverage.
• Currently, there is a lot of treatment prioritization for substance use disorders, which can lead to the de-prioritization or neglect of eating disorder treatment. Furthermore, many psychiatric hospitals and trauma centers don’t have eating disorder programs.

Cultural barriers

The lack of culturally competent treatment providers can lead to a host of treatment barriers, which include:

• Lack of treatment programs designed to address the specific issues members of the LGBTQ+ community face in conjunction with eating disorders
• Social stigma around seeking help for mental illness
• Glorification of thinness and fatphobia everywhere due to the pervasive nature of diet culture
• The impact of toxic masculinity on some men’s willingness to acknowledge their own disordered eating behaviors or seek help
• Lack of accurate representation in the media

Financial barriers

If you’re of a low income, the financial barriers to treatment can seem impossible. They include:

• High prevalence of people with low incomes or living below the poverty line
• High cost of eating disorder treatment
• High co-pays, out-of-pocket maximums, and insurance deductibles
• Insufficient credit to consider going into debt to pay for treatment
• Trouble keeping up will bills while paying for treatment or being out of work due to treatment

Logistical barriers

One of the major logistical barriers to treatment is geography. Many people seeking eating disorder treatment live in rural areas and locations far from suitable treatment centers. Other logistical barriers include:

• Inability to take time off for treatment and find and pay for childcare or pet care during treatment
• Difficulty in paying for travel to and from treatment
• Trouble finding an appropriate provider due to the lack of an authoritative, centralized database of eating disorder providers

Other barriers

In reality, this is probably not an exhaustive list of the barriers to treatment disproportionately experienced by marginalized and minority groups. There are many other barriers surrounding biased diagnoses, lack of understanding of treatment providers working with pregnant, male, athlete, LGBTQ+, etc., clients, lack of treatment of co-occurring disorders, long waitlists for care, no consideration for religious dietary needs, and so much more.

Who are Project Heal?

These varied barriers to treatment clearly show a clear need for more equitable and accessible eating disorder treatment. These barriers have severe consequences, as eating disorders are the second most fatal mental illness, with one person dying directly from an eating disorder every 52 minutes.⁵

Project Heal was founded in 2008 to help people access treatment by breaking down systemic, healthcare, and financial barriers to healing eating disorders. Through their work, Project Heal hopes to change the system and, in the meantime, provide life-saving support to people with eating disorders that the system neglects.

Equity is important to everyone at Project Heal. Therefore, they intentionally prioritize those who have been harmed by or excluded from the eating disorder field due to biases such as weight discrimination, racism, transphobia, ableism, classism, and homophobia.

Recognizing that traditional eating disorder treatment is not suitable for everyone, Project Heal connects beneficiaries to care that will most likely empower their progress toward their desired outcomes.

Final words

Contrary to common misconceptions, eating disorders don’t discriminate. They affect people of all ages, gender identities, sexual orientations, races, ethnicities, body shapes, and socioeconomic statuses. 

To paraphrase, Rebecca Eyre, the CEO of Project Heal, makes it clear to marginalized groups that treatment centers are a safe place for everyone. One way to do that is to show representation in websites and marketing materials.

While organizations like Project Heal help to reach and treat “exiles” of the eating disorder community, it’s clear that more needs to be done.

Resources

1. It's more than just stigma: Systemic barriers to eating disorder treatment. (2021, February 11). Office for Institutional Equity and Diversity. Retrieved February 24, 2023.
2. Overview of treatment barriers. (n.d.). ProjectHEAL. Retrieved February 23, 2023.
3. Innes, N., Clough, B., & Casey, L. (2016). Assessing Treatment Barriers in Eating Disorders: A Systematic Review. Eating Disorders: The Journal of Treatment and Prevention, 25.
4. New Report Identifies Root Causes of Health Inequity in the U.S., Outlines Solutions for Communities to Advance Health Equity. (n.d.). National Academies. Retrieved February 28, 2023. ‍
5. Our Mission. (n.d.). ProjectHEAL. Retrieved February 28, 2023