In eating disorder programs, addressing the historical treatment gap for people of color
Eating disorders affect people of every gender identity, race, age, sexual orientation and background, but for decades the societal perception was that only young, affluent, cisgender, white women were likely to develop the condition.
“There was a belief that anorexia nervosa was an affliction that strikes young white women of privilege, but it did not exist in lower social classes, in association with poverty, or lack of privilege. And little attention was paid to anomalies of eating behavior in people of color,” says Michael Strober, PhD, distinguished professor in the Department of Psychiatry at UCLA, director of the Eating Disorders Program at the Resnick Neuropsychiatric Hospital at UCLA and Resnick Chair in eating disorders.
“But in the last decade, the number of young people admitted to the eating disorders program from underserved populations has skyrocketed.”
In the past year alone, Dr. Strober says, no fewer than 50% of the patients admitted to the Eating Disorders Program at UCLA have been people of color.
The reason for the increase? “Greater awareness of eating disorder symptoms by primary care physicians, public education and improved access to care via insurance coverage, Medi-CAL included,” he says.
Still, the field overall must continue to challenge the stereotype of the young and affluent white female patient and recognize the unique cultural forces that impact the development and treatment of eating disorders in communities of color, UCLA experts say.
Defining the disorder
Eating disorders are severe and persistent illnesses that are associated with disturbances in people’s eating behaviors and related thoughts and emotions, according to the National Institute of Mental Health. Preoccupation with food, body weight and shape may also signal an eating disorder.
The most common include:
- Anorexia nervosa, an illness of obsessive self-starvation characterized by the refusal to maintain a minimally normal weight, intense fear of weight gain and distorted perception of the body.
- Bulimia nervosa, an illness of repetitive binge eating or consumption of a large amount of food within a relatively short period of time. The person often feels guilt or shame during or after the episode and will engage in compensatory behaviors to prevent weight gain, such as vomiting or excessive exercise.
- Binge eating, an illness where a person consumes unusually large amounts of food and feels unable to stop eating.
The peak age of onset is between 15 and 25, which is a developmentally sensitive time. According to an article in the The Lancet medical journal, the average illness duration is about six years.
A misconception about eating disorders, Dr. Strober says, is that people “simply need to make a decision to reverse course.”
But these are psychiatric disorders preceded by a number of distinguishing characteristics, such as anxiety, discomfort with change and reservation expressing emotional needs.
“The idea that somebody can turn this around if they want to and if they're motivated to, does not accurately characterize the nature of this condition,” Dr. Strober says.
Due to the severity of these conditions, early, adequate and culturally competent treatment is critical to break the cycle, he says.
A racial bias?
Historically, the majority of assessments, screenings and diagnostic tools were developed for white female groups, making literature on diverse groups scarce.
Data show that Black, Indigenous and People of Color (BIPOC) are significantly less likely than white people to have been asked by a doctor about eating disorder symptoms.
Diagnosis could bridge the difference for many patients of color, but nuances in classification have made it challenging, says Gail Wyatt, PhD, licensed clinical psychologist and professor-in-residence of Psychiatry and Biobehavioral Sciences at the Jane and Terry Semel Institute for Neuroscience and Human Behavior at UCLA.
Until 2013, the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), the diagnostic tool used for psychiatric diagnoses and treatment recommendations, classified only anorexia nervosa and bulimia nervosa as the main disorders.
Implications from this classification left out people whose behaviors did not fit the symptoms of anorexia and bulimia – such as binge eating.
Overeating should also be considered a disorder due to its compulsive nature, says Dr. Wyatt.
“It's the use of food to comfort, to satisfy, to make other people feel that you're more acceptable,” she says.
Though research on diverse populations with eating disorders is generally limited, several studies suggest binge eating is as common, if not more prevalent, among Black American women as white American women.
“If the disorders don't meet the DSM-V classification, their insurances will not pay for them to get any help,” says Dr. Wyatt. “I think that is an extremely biased and discriminatory policy.”
Binge eating disorder is now in the same category as anorexia and bulimia. But this classification method can also oversimplify human behavior and increases the risk of misdiagnosis or over-diagnosis.
Brittany Tarrant, MD, a child and adolescent psychiatrist at UCLA Health, says doctors haven’t always been primed to look for eating disorders among diverse populations and may miss the signs during routine visits, creating gaps in care.
“You can have a teen that you think is just bingeing on the weekend and eating their favorite snack foods, but it may actually be a binge eating disorder,” she says. “We may call it disordered eating without necessarily meeting the criteria of a DSM-V diagnosis and that's how things can get missed.”
Eating disorders are frequently left out of preventive screenings, says Dr. Tarrant. The more physical signs, such as visible weight loss, hair loss, missed menstrual periods and heart palpitations, are largely seen when a patient is in “dire straits” and needs to be admitted to the hospital.
“If you aren't aware of what the signs and symptoms even are in the first place, you aren't aware of what to look out for.”
Diagnosing a patient with an illness has great implications – it informs treatment, care costs, insurance reimbursements and outlook. This is why, Dr. Tarrant says “all metrics in medicine must be addressed with nuance.”
If you’re diagnosing patients according to the body mass index chart, “all you're looking at is someone's kilograms and someone's height. This number does not represent what is going on in their day-to-day life,” she says. “It's not representing whether they live in a food desert, if they have access to healthy food, it's not representing what other psychosocial stressors there are.”
For anorexia nervosa, she says oftentimes a person’s BMI must be under 18 to be classified as underweight. But people who show signs of disordered eating may have weight that falls into the healthy-to-obese range.
“If all you're looking at is the BMI, they don't meet criteria, so they can't get treatment,” Dr. Tarrant says.
Access, stigma and other roadblocks to care
Beyond diagnosis, adequate access to treatment remains an additional barrier for BIPOC with eating disorders.
“Evidence show that there's a lag time of about 15 months between when someone is diagnosed and when they actually get treatment,” Dr. Tarrant says.
One of her patients being seen for diabetes went into a ketoacidosis coma, a diabetic complication where the body produces too much blood acids, due to an underlying and unaddressed binge eating disorder.
“She was being labeled as a non-compliant patient because she wasn’t doing well with her diabetes, but no one was addressing her binge eating disorder,” Dr. Tarrant recalls. “It took me stepping in and asking, ‘What’s going on in her environment and what are her stressors?’ for there to be any change.”
Dr. Tarrant says social factors such as family dynamics, foster care and the justice system may contribute to a patient’s success in recovery.
An example is a patient Dr. Tarrant encountered who was recently released from incarceration. She was experiencing low energy and mood, had been skipping breakfast and generally “ate light” during the week days.
“On the weekends she’s ordering her favorite foods, like pizza. She thinks she’s dieting, but her eating has become problematic,” she says. “I’m treating her for depression and her medications have caused her to gain weight. If I didn’t ask about her eating habits, you wouldn’t recognize (the eating disorder) unless you asked. There are so many factors to it.”
Additionally, for adolescent patients, stigma and shame may prevent them from coming forward about their behaviors, Dr. Tarrant says.
“Unless adolescents are away from their family unit or emancipated, they have to tell their families that they want treatment. If their parent doesn’t believe them, or they don’t have adequate insurance, can’t afford the copay or if their parents are illiterate, those are significant roadblocks to care,” she says.
This, Dr. Tarrant says, is why treating underlying disorders is so important.
“We have to make sure that we're treating the underlying and co-occurring disorders that often get missed and are happening right along with the eating disorders, such as trauma and depression.”
Additionally, culturally competent care must be carefully considered, Dr. Tarrant says. For example, she says, suppose you have a Latina patient with a Spanish speaking family.
“How many Spanish speaking providers are out there that can really connect and do culturally informed therapy? Do you have representation in the treatment that you're getting?” Dr. Tarrant asks.
Dr. Wyatt adds that if research continues to leave out diverse participants, the “white rather than diverse” narrative will continue.
And even with improved education and representation on eating disorders and access to adequate, culturally humble care, Dr. Tarrant says it is vital for providers to use evidence-based care in ways that patients can feasibly attain it.
“That includes coverage for individuals who are underinsured or uninsured and increasing treatment of underlying or co-occurring disorders,” Dr. Tarrant says. “We may have improved some but we have a long way to go.”
Learn more about the Eating Disorders Program at UCLA Health.