This family-based approach brings healing at home.
At the tender age of 10, Kristina Saffran developed an eating disorder. After a long journey to recovery, she started a nonprofit aimed at bringing treatment to those suffering in the same way, but soon realized how difficult it was to deliver the right type of broad, reliable care. One shocking statistic? Only 20 percent of those who need eating disorder treatment will receive it. So she and her partner Dr. Erin Parks began devising a system that would bring families together and guide them through the process — in the comfort of their homes, no less.
The result was Equip, a virtual method of eating disorder treatment that uses an evidence-based approach to address this complex (and deadly) issue. It’s one that’s close to Katie’s heart, given that she had her own struggles with an eating disorder, which she spoke about openly in her memoir, Going There. In honor of Eating Disorder Awareness Week, she checked in with Saffran to learn more about the origins of Equip, the trouble with current treatment methods, and the approach that the company’s founders believe will transform the way we help those in their time of deep need.
Katie Couric: Kristina, you developed an eating disorder when you were just 10 years old. Can you tell us a little about your personal journey?
Kristina Saffran: When I struggled with anorexia, I hadn’t met a single person who had recovered from their eating disorder. Clinicians told me that while I could manage the behaviors, there would always be a monster terrorizing my brain. Cycling in and out of treatment centers for my entire freshman year of high school, I began to look up to the older folks who’d been through the revolving door for decades: maybe that was the life I should aspire to. Recovery felt impossible, and certainly not worth the hard work.
I would’ve lived in treatment for all of high school, had my parents not discovered Family Based Treatment, the only evidence-based treatment for adolescents and young adults with ED, which brought me to recovery. I was one of the lucky few. Soon after, I learned that 80% of the 30 million Americans who struggle with eating disorders won’t receive treatment, and less than 1% have access to treatment that works. So I decided to do something about it.
At the age of 15, I started Project HEAL, a nonprofit with the mission to ensure that every person with an eating disorder has access to treatment. For the next decade, I saw just how starved the eating disorder field truly is: eating disorder nonprofits collectively raise less than 10 million dollars per year and research funding for eating disorders is about $1 per affected individual. Stigma and misunderstanding drive this inequity — eating disorders are incorrectly viewed as a vanity issue of thin white girls, despite decades of research showing that they are fatal brain disorders affecting people of all ages, races, genders, classes and body shapes and sizes.
While we were able to reach hundreds of folks on their journey to recovery, I was acutely aware of the millions that we weren’t reaching. Every day, I had to turn down applications from worthy folks who desperately wanted to get better — families who were working multiple jobs and depleting college and retirement funds to afford treatment. It was exasperating to see insurance cover 45 days of residential care, but no specialized outpatient care afterwards, setting them up for a cycle of relapse. And of course, the treatment spaces I saw were overwhelmingly white, thin, and upper middle class. Far too many of my friends have died of this terrible disease, and far too many parents have lost children.
I began to see the futility of trying to create transformational change in the eating disorder field via nonprofit or academia, but was skeptical of for-profit health care. I worried about upholding strong values and a mission-driven culture, especially after seeing the unintended consequences of private equity flowing into the eating disorder space. But realizing that less than 1% of folks who suffer with the second deadliest mental illness have access to treatment that works, I decided that we needed to move forward in a new way to achieve the monumental change needed in the field. So two years ago, we raised venture capital funding and started Equip.
You’ve teamed up with Dr. Erin Parks, who has 15-plus years in treatment and research. Dr. Parks, tell us the latest science of eating disorders: For starters, what causes them?
Dr. Parks: Most people don’t realize that eating disorders are brain disorders rooted in complex biological, psychological and social underpinnings. When someone is vulnerable to those factors, we’ve seen that a triggering factor like starting a diet can set off a genetic, biological cascade. Some key facts people should know about the science behind eating disorders?To start, they’re caused by a complex combination of genetic and environmental factors. No single person, experience, or issue is to blame for a person’s illness.
Research shows that people with anorexia have a tough time learning from reward— and too easy of a time learning from punishment. Brain imaging has shown that the reward-circuitry is wired differently in many people with eating disorders, resulting in consequences being more salient than rewards. So using reward-based systems to encourage weight restoration or recovery — “I’ll buy you a gift or a dog or a car if you recover” — doesn’t usually work because of the way the person’s brain is wired. They’re more likely to respond to consequences: “You won’t be able to attend soccer practice until you finish all of your dinner, even if it means being late).” Understanding this through multi-layered treatment and working with it, rather than resisting it, can lead to lasting, positive change.
People with eating disorders share powerful temperament traits like perfectionism, high attention to detail, and an ability to focus on a goal and persist to completion. When those traits are used towards food and diet, it can turn into an eating disorder. Treatment redirects these powerful temperament traits towards positive behaviors.
Also, most eating disorder treatment programs don’t address the neuroscience underpinning the disease. We know that people with eating disorders, as well as their loved ones, often experience guilt and shame around the illness and question what could have possibly caused it. We want to make it clear that eating disorders are complicated and layered and influenced by a range of genetic and environmental factors — no single person, experience, or issue is to blame for a person’s eating disorder.
The malnourishment of an eating disorder can and does affect thoughts and behaviors, so nutritional rehabilitation is a priority. Malnourishment results in hypermetabolism for several patients, meaning that people need to eat 3500+ calories per day to restore weight.
Additionally, because of their unique neurobiology, many with eating disorders experience something known as impaired interoceptive awareness. This means their subjective perception of internal body sensations like hunger or fullness cues is altered, and it can be difficult for them to connect to their physical bodies. Many also have anosognosia, which means that they’re often unaware of the severity of their illness.
Kristina, as you got older, you realized that the current treatment for eating disorders had significant room for improvement. What are some of the problems with getting treatment today?
KS: Eating disorders will affect over 30 million Americans in their lifetime, yet only 20% of those struggling receive treatment, and an even tinier fraction get treatment that works. Eating disorders are misperceived as a vanity issue of thin white girls, leaving millions of people going undiagnosed or untreated every year.
At Equip, we believe strongly that patients don’t fail treatment, but rather treatment fails patients. The current treatment landscape is set up to deliver care that often feels good but doesn’t work — leading to a relapse rate of up to 50%. Many young people are uprooted to go to traditional treatment centers that pull them away from their family and routines, and don’t enable them to build a life worth living. Most traditional treatment doesn’t address the neurobiology underpinning the disease: For an illness that requires you to fight your brain upwards of 6 times per day, it’s not only ineffective but frankly, cruel to treat it as an individual illness. That’s why family involvement is at the heart of lasting recovery. Traditional treatment is also fragmented, with folks switching treatment teams and modalities every few weeks or months, in addition to being cost-prohibitive, leading many to cycle in and out of treatment for years without ever getting better.
Finally, most traditional treatment isn’t grounded in “health at every size” principles — the idea that healthy people come in all shapes and sizes and weight is a poor proxy for health. Many people leave treatment still terrified of weight gain, setting them up for a relapse, especially in our diet-infused culture that values the thin ideal.
Dr. Parks, many people think of eating disorders as something that impacts mostly white, affluent teenage girls. Tell us why that’s untrue.
EP: Harmful stereotypes plague eating disorders, making it harder for people to seek help and recover, with one of the most harmful stereotypes being that eating disorders ”only affect young, thin, affluent, white, cis-girls.”
In truth, eating disorders affect people of all races, ethnicities, body shapes, ages, and genders quite equally: Nearly half of people with eating disorders are men. All the misinformation is one reason why most of the 30 million Americans with eating disorders never get treatment, and why people are often sick for more than three years before they get a diagnosis. For people who don’t fall into the ED stereotype, they may go a decade or more without a proper diagnosis.
You also can’t tell someone has an eating disorder by looking at them, because they affect people of all body sizes. The myth that people in non-thin bodies don’t have eating disorders is rampant, even amongst the medical community. The majority of people with eating disorders actually have average or higher-weight bodies.
Kristina, the pandemic has caused a 70 percent increase in eating disorders and doubled hospitalizations. How have the past two years exacerbated the problem?
KS: Eating disorders have more than doubled during the pandemic, likely for a variety of reasons. First, the pandemic increased stress, anxiety, and depression for many people. Disordered eating (e.g., restricting, bingeing, purging) are all behaviors that people use to cope with stress, similar to how some turn to alcohol or self-harm. As the pandemic increased everyone’s stress levels, more people turned to disordered eating to cope.
Also, pandemic-prompted school closures created social isolation for many teens and young adults, leading to an inordinate amount of time spent on screens, particularly social media. Recent research shows how social media can exacerbate poor body image, promote diet culture, and trigger eating disorders.
Plus, eating disorders also increase during times of food insecurity. The financial stress of the pandemic drove many families into food insecurity and subsequently, eating disorders.
Family-Based Treatment seems to be the most effective form of treatment. What is FBT exactly, and what kind of success rate is there with this approach?
KS: Equip is built on the Family-Based Treatment (FBT) model, which was previously called The Maudsley Method, coming out of the Maudsley hospital in London in the late 1990’s. It’s the only evidence-based care for young people, with the highest rates of recovery and the lowest rates of relapse — however, it can also be nearly impossible to find providers specializing in FBT because it’s stuck in academic circles. Only a small number of providers are trained in it, and those that are have months-long waiting lists and rarely accept insurance.
FBT is based on a few key principles: that families don’t cause eating disorders and are in the best position to help their child recover, that nutrition must come first, since so many eating disorder symptoms are symptoms of malnutrition — and that they’re brain disorders, not illnesses of choice or vanity. With FBT, the illness is medicalized, like cancer, and the family unites against the eating disorder — instead of the parents against their child.
In FBT, the family structures the home environment for pro-health behaviors. Much like a parent would eliminate alcohol from the house if their teen was struggling with substance abuse, in FBT, the family creates structures that makes it difficult for the child to act on their eating disorder urges.
Traditional FBT is delivered once per week, by a therapist. Equip builds on FBT by providing a dedicated five-person care team for every patient — a peer mentor, a family mentor, a medical physician, a therapist and a dietitian — who all assist the family in structuring the home for pro-health behaviors.
With Equip, patients and their families are well on their way to healing. After eight weeks of treatment, 71% of patients report a reduction in eating disorder symptoms and two-thirds report improvements in mood. In that time, 96% of parents report feeling more confident in caring for their child with an eating disorder.
Equip makes FBT treatment more accessible because it’s a digital platform. Why did you decide to go that route?
KS: Even before the pandemic, Equip was designed to be fully virtual, so that treatment fits the family’s needs and helps the patient continue to build a life worth living to drown out the eating disorder. Traditional treatment often resulted in kids missing soccer practice, Boy scouts meetings, or school field trips, in order to attend appointments or be sent away for treatment. But kids and teens need to be living their lives. Equip arranges treatment around your family, instead of you arranging your family around treatment.
By utilizing telehealth, Equip families bring their full village into treatment: parents, step-parents, grandparents, siblings, friends — with everyone aligned to fight the eating disorder. This allows families to support their loved one with a united front even with different households, demanding jobs, and multiple children. This helps protect patients from relapse because their community knows the eating disorder and how to help fight it.
As you’ve pointed out, insurance is a big problem — most companies only cover one month of in-patient treatment. You’re working with insurance companies so this kind of therapeutic approach is more affordable. Tell us about that.
KS: Eating disorder treatment can be prohibitively expensive for a number of reasons. First, there’s such demand for treatment that many treatment centers and providers only take cash, and the ones that take insurance often have months-long wait lists. Additionally, people may have insurance coverage for a treatment center that is several hours from their home, but don’t have access to providers in their own community.
One of our primary goals at Equip is to make sure that eating disorder treatment is accessible to all who suffer, and partnering with insurance companies and Medicaid gets us one step closer to that goal. We’re contracted with over 10 payors so that treatment is typically free for families after they’ve paid their deductible and copays. Our payor partnerships also ensure that treatment can continue for an extended period of time. This is so important for lasting recovery, given that the average relapse rate for eating disorders is 50% within the first 6-12 months.
What medications, if any, seem to be most helpful when treating eating disorders?
KS: There are a variety of different medications that’ve helped people during eating disorder treatment, including antidepressant medications (like SSRIs), anti-anxiety medication, mood stabilizers, and even the new generation of atypical antipsychotic medications. There has been no single medication that has been found to be helpful for everyone, which may be because there are five different types of eating disorders, and they often co-occur with varying disorders, such as depression, anxiety, PTSD, or emotion dysregulation.
There are different kinds of eating disorders: bulimia, which I experienced as a young adult; anorexia, something my daughter Carrie struggled with; and disordered eating in general. Do you treat each of these differently?
KS: Great question! Yes, there are 7 different types of eating disorders, with the most common being bulimia, anorexia, binge-eating disorder, and avoidant restrictive food intake disorder (ARFID). Each eating disorder is treated differently, and they’re also treated differently depending on which co-occurring disorders are present. Certain core aspects are true regardless: you need to bring a village like family and friends to help you recover, and you need to prioritize proper nutrition and, when applicable, weight restoration before any other aspect of treatment.
How has social media made this problem worse? And what advice can you give parents and their kids?
KS: Social media opens the door for patients to consume harmful content and compare themselves to others. A child in the 90’s may have seen similar content in a magazine, but social media allows for 1000x the amount of harmful content — like diet culture, and thin ideals — to be consumed in the same amount of time. This constant exposure to dieting, “fitspo,” and “before and after” pages can be detrimental to a patient’s recovery journey.
On the other side of the coin, a patient can control what they post, but they can’t control how others will react. No two people experience eating disorders the same way, and what’s true for one person might not be for the next. In general, I’d advise patients and their parents to set strict boundaries on what accounts they follow, what kind of content they view or post, and how much time they spend on social media. We also recommend that patients use the time they would’ve otherwise spent on social media to engage in activities they love, like taking an art class, participating in a sport, or even just hanging out with friends and family.
Many people who have eating disorders feel shame and embarrassment and keep their issue hidden from their loved ones. How are you hoping Equip will remove the stigma associated with eating disorders?
KS: Our treatment method, rooted in FBT, is designed to involve the family, and our virtual care lets patients recover at home. That combination of approaches helps ease some of the stigma around eating disorders, giving families an inside look into how the patient is recovering, and helps patients feel more confident about opening up. Our peer and family mentors help patients and their families build skills around discussing the eating disorder head-on, which also eliminates the secrecy and hesitation. This opens more doors for patients to share their stories with their close circles, creating a ripple effect that changes how we view and talk about eating disorders across our society.
What’s your goal as you launch this company?
KS: Equip’s mission is to provide access to eating disorder treatment that works, to everyone who needs it. We’re currently in-network with 10 major commercial insurance plans and Medicaid to ensure treatment is available in underserved communities, have expanded to nearly all 50 states, and will be launching to adults soon. We’ll also be launching a body-image program rooted in decades of research later this year, for eating disorder prevention and to help ensure that every young person can grow up safe in their body.
We also know that access isn’t meaningful unless treatment is safe and culturally humble. To that end, we’re committed to building care teams that are reflective of the true diversity of eating disorder sufferers. Today, 34% of Equipsters identify as BIPOC, 33% as LGBTQ+, and 7% as transgender or non-binary.
We’re determined to fundamentally change the cultural conversation around eating disorders and body image. We have to dismantle stereotypes and body ideals in order to build a world free from diet culture and fat phobia, so full recovery can be not only possible, but truly inevitable for all people.
