In 2014, after spending exactly half my life battling an eating disorder, I was tired. Debilitating mental anguish aside, the logistics of cobbling together a treatment team are kind of a nightmare. I was tired of coordinating appointments and relaying messages between doctors, dietitians, and therapists, and I was tired of filing insurance claims hoping to recover a fraction of my out-of-pocket expenses. After fifteen years of navigating the complexities of the treatment world solo, I was ready to ask for help. That was when I learned what “help” in the form of traditional eating disorder care actually looks like—and costs.
I reached out to a residential facility with dreamy beach scenery splashed across their website. Advertising an “outcome-backed approach” to eating disorder treatment, along with the kinds of bells and whistles I assumed would reprogram years of compulsive thoughts and behaviors (Group yoga! Nature excursions!), the program seemed solid and I was ready to commit to a month-long stint in immersive care. But the price tag for that care came out to a dollar amount I couldn’t fathom—$43,500 for 30 days. And when I petitioned my (fairly generous) insurance carrier for financial assistance, I was informed I did not qualify for said assistance because my weight was not considered low enough to merit the level of care I was seeking. And so, I could choose to either go into debt or fall deeper into my disorder in an effort to meet insurance criteria.
This is when I learned that eating disorder treatment as it stands is broken.
Kristina Saffran learned that lesson too. After being diagnosed with anorexia at age 10, her family pieced together a treatment team and committed themselves to her healing. It worked—for a while. But by her freshman year of high school, Saffran had relapsed and was hospitalized four times in seven months. “I wanted nothing more than to go to a residential treatment center,” she says. “But I was terrified of missing my whole sophomore year.” Instead, Saffran stayed in school and committed to a strategy known as Family-Based Treatment, or FBT, an outpatient behavioral technique in which families play a critical role in the recovery process. “That really was the catalyst for launching Equip.”
Equip is Saffran’s brainchild, created in collaboration with co-founder, Erin Parks, Ph.D, a clinical psychologist and researcher. The fully virtual platform, which launched earlier this month, is designed to make FBT accessible for anyone who has an eating disorder. Patients and their families are assigned a five-person dedicated care team, including a peer and family mentor, a medical physician, therapist, and a dietician, and treatment plans are customized to fit each family’s schedule.
“80 percent of the 30 million people who have eating disorders don't get treatment,” Saffran says. “When I learned that, I knew it was horrible and I thought I had to do something about it—I started by naively just wanting to fix the problem.” Saffran’s initial endeavor to address the issue was Project HEAL, a nonprofit she helped launch in 2008 to offer insurance navigation, treatment placement, and cash assistance programs to those in need. “We saw tremendous support and it really took on a grassroots movement, with over 40 chapters before we even had one staff member,” she says. “But I was constantly thinking about how we could disseminate access, not just to any treatment, but to treatment that actually works.”
As it turns out, not all treatment is created equal when it comes to eating disorders (or most conditions, for that matter). Anyone can market themselves as a “specialist,” but a surprisingly small pool of professionals are actually trained in “evidence-based” techniques, which have the most solid science to demonstrate their effectiveness. Cognitive Behavioral Therapy (CBT), which involves skills like positive self-talk and journaling to retrain destructive thought and behavior patterns, is one of the most well-known evidence-based therapies for eating disorders. Dialectical Behavioral Therapy (DBT) is another; it teaches people coping strategies like mindfulness, self-soothing, and even distraction. But while these modalities may have a major impact on eating disorder sufferers of any age, FBT is “the only well-established treatment for adolescent eating disorders” which is why Saffran and Parks built Equip on its principles.
“If you have back pain, you might go to a doctor and they’ll tell you about a range of treatment options, from physical therapy to surgery,” Parks explains. “They’ll let you know the effectiveness of different procedures, the potential side effects, and they'd always suggest that you start with the least invasive treatment; you'd never have surgery without first trying physical therapy. In mental health, we often see the opposite recommendations, with people suggesting that people start at the highest level of care.”
Parks says the other pervasive problem embedded in traditional mental health care is the conflation of “feel-good” therapy with surefire recovery. “We don't yet differentiate between treatment that feels good and treatment that actually works,” she says. “The treatment we often give people is to go sit and talk to someone who might be kind, and validating, and empathetic. You might leave the appointment feeling good, but that’s not the same thing as receiving an intervention that actually helps you get better. A series of randomized clinical trials has shown that children, adolescents, and young adults who receive FBT for their eating disorder are more likely to recover.”
Originally developed in the late 1970s and dubbed the Maudsley Method, FBT has demonstrated full remission rates of over 40% in adolescents with anorexia. The premise is simple, but execution can be challenging, if not impossible without proper support: it involves the participation of a patient’s family in every aspect of recovery. That means parents, guardians, siblings, and/or any close contacts in the patient’s life are tasked with helping their loved one recover through planning, serving, and supervising meals. It means these caregivers have to constantly be on the lookout for potential set-backs, like after-meal bathroom trips that could indicate purging or secret workout sessions to burn much-needed calories.
“It’s not that people with eating disorders are choosing not to eat—it’s that their brains aren’t letting them,” Saffran says. “There’s really strong evidence that FBT is effective, but it can still suck, for a whole host of reasons. For me, it wasn’t covered at all by my insurance, so my family had to pay out of pocket for multiple appointments a week, driving to appointments was time-consuming, and often only one family member could attend sessions because both my parents were working. It’s a logistical nightmare.”
Compounding those obstacles is, of course, the financial burden of care. Intensive outpatient programs, which often include daytime therapy and/or group sessions, can cost several thousand dollars per month. Higher-level residential programs where patients live full-time and receive meal support, multidisciplinary treatment, and individual and group therapy (which aren't necessarily proven to be effective) can cost up to and beyond $1,000 per day. And as I learned in my own search for treatment, insurance doesn’t always make a difference and claims are often rejected on the basis of weight, progress, medical history, and more.
To address the complicated realities of treatment, Saffran and Parks partnered with several insurance partners, and are working to secure contracts with Medicaid plans and other carriers. Equip also offers a sliding scale for services, although families are likely to receive a year’s worth of treatment for the same cost as just one month in a residential facility, if they were to pay out of pocket.
To navigate the non-financial complexities of treatment, Parks and Saffran have developed what they consider “super-charged FBT”: in addition to incorporating family members, their treatment protocol involves a five-person care team for each patient, including a peer mentor (someone who has recovered from an eating disorder), and a family mentor (someone who has helped their loved one through an eating disorder). The program is customized to include weekly sessions with each member of the care team as well as unlimited check-ins in between sessions to address questions or difficult experiences that arise. “We expect most families to do intensive work during the first four months of treatment for symptom reduction and weight restoration goals, followed by a second phase of eight months of treatment dedicated to relapse prevention and skill development,” Saffran says.
Maris Degener, whose eating disorder experience and recovery was chronicled in the documentary film, I Am Maris, serves as Equip’s lead peer mentor. “As a teenager, I was privileged and lucky enough to have quick access to treatment after being diagnosed,” she says. “I've been passionate about sharing my story and spreading the word that there is hope for recovery ever since, and it has always been front of mind for me that not everyone has access to quality treatment like I did.”
Although Equip is currently treating children as young as six years old, and young adults in their early 20s, the team is working to expand their offerings to people of all ages and demographics. Despite the persistent myth that eating disorders only affect young, white, affluent cis women, it’s been well documented that anorexia, bulimia, binge eating disorder, and other forms of disordered eating impact people of all ages, races, genders, sexual orientations, and socioeconomic statuses.
Ellen Fitzsimmons-Craft, PhD, an assistant professor in the Department of Psychiatry at the Washington University School of Medicine, says Equip is directly addressing a national care disparity issue. “What Equip is doing is so needed for overcoming the very wide treatment gap we see, with more than 80% of patients with eating disorders never receiving treatment, as well as the research-practice gap, where among that small minority that receives treatment, it’s typically not evidence-based. Equip has the potential to bring life-saving treatment to families who might not have had access before—whether that’s because they live in a rural area without access to a trained provider, struggle to get the whole family to treatment during times a provider is available, or because they’re experiencing another practical barrier telehealth can overcome.”
It’s tough to think of a treatment barrier more difficult to overcome than a global pandemic. When the coronavirus outbreak effectively shut down all in-person care options last year, many eating disorder patients were left without resources. As research has indicated, people with eating disorders have experienced an increase in symptoms since the start of the pandemic and telehealth options in the form of phone calls and Zoom sessions haven’t proven to be all that effective.
“Access to care is one of the biggest problems we face in the eating disorders field,” says Cynthia Bulik, PhD, Founding Director of the University of North Carolina Center of Excellence for Eating Disorders. “If you live far from a specialist center or trained therapists, you’re basically out of luck. Equip brings treatment to your front door, which became unexpectedly essential when the pandemic hit.”
Geoff Craddock, chairman of the board of directors for the National Eating Disorders Association (NEDA), says his team saw first-hand how the pandemic exacerbated issues for sufferers and increased the need for comprehensive, effective remote care. “Pre-pandemic, there was research to illustrate that eating disorders are among the deadliest mental illnesses, second only to opioid overdose,” he says. “Our experience at NEDA—an increase in calls to our Helpline by 40% year-on-year—highlights that the isolation caused by COVID made this situation even worse for many individuals. These callers tell the story: the need is urgent and increasing every day. With timely access to high-quality care, we can change outcomes in the lives of individuals and families.We can offer hope."
So far, Equip has provided a source of hope to the handful of families who participated in the company’s beta test last summer, and to those in California, Texas, and New York, who have signed up since the official launch. Virginia, a Smyrna, Delaware mom was involved in the beta test to help treat her 15-year-old daughter, D., who was diagnosed with anorexia a year ago. “We knew something wasn't right for several months before the diagnosis,” she says. “We contacted a local therapist in search of answers; unfortunately we did not have a good outcome with her. We were lucky enough to have found Equip and gladly jumped into a beta trial when the opportunity popped up.” All eight families in the beta trial reported healthy weight restoration and symptom improvements, and all of them requested to stick with their treatment teams for ongoing support. "Full recovery really is possible," Saffran says. "Eating disorders have the second highest mortality rate of all mental illnesses and people lose their entire lives to them, yet you can recover and go on to do pretty amazing things. It’s possible and it’s worth it."