More than 30 million Americans with eating disorders don’t get the treatment they need to fully recover — and against common assumptions, these disorders affect people equally across genders, races, ethnicities, sexual orientation, and socioeconomic status. Through Equip, which launched last month, founders Kristina Saffran and Erin Parks, Ph.D., are on a mission to transform and expand treatment options through Family-Based Treatment that can be delivered at home. They sat down with mental health advocate, former Representative Patrick J. Kennedy, to discuss their vision.
Patrick Kennedy: Kristina, it is terrific to see your migration from advocate to entrepreneur. How does that happen?
Kristina Saffran: I really consider Equip to be a continuation of the mission that I’ve been on since I was 15 years old, which is ensuring that everyone with an eating disorder can access quality treatment. As you know, I was diagnosed with anorexia at 10 years old and struggled throughout my adolescence.
I saw when I was in treatment that 80% of the 30 million Americans with eating disorders don’t get treatment. I thought, “This is horrible, I have to do something about this.” So that’s how Project HEAL started in ‘08 — the same year you passed the Mental Health Parity Act to raise money for people who couldn’t afford treatment. Over the years, we’ve seen more and more people having access to residential care and no quality outpatient care. It had plagued me for years.
Kennedy: I love your point that we’re stuck in a one-size-fits-all provider system that doesn’t distinguish between patients’ individual needs and their optimal pathway to recovery. We spend a lot of money in the current system on really expensive end-stage care, not upstream care. It’s “sick-based” care as opposed to health care. Erin, as a clinical psychologist, researcher, and former director of the leading UC San Diego Center for Eating Disorders, talk a little about FBT+, if you will.
Erin Parks: So the evidence-based treatment for eating disorders is called FBT, an acronym for Family-Based Treatment. It’s unfortunately a radical idea that families are best equipped to help their children and their loved ones through illness. What’s happening right now is that there are a lot of people, a lot of adolescents in one-to-one therapy. The parents are really excluded from treatment. In FBT, we task the parents with structuring the home environment for pro-health behaviors.
For example, if you thought your 15-year-old was struggling with substance use, when they go to soccer practice, you would search their bedroom, look under their mattress, look in their closet, make sure there were no substances. Make it difficult for them to act on their urge to use substances. It doesn’t mean the urges are going to go away overnight, but by eliminating the ability to act on them, the urges will have less impact. The same is true with eating disorders. If your child is struggling with vomiting after meals, it becomes a family rule that after meals, there is unlimited screen time, and you need to be where I can see you. No showering after meals, no being alone in your bedroom.
We call it FBT+ because while FBT has been shown in numerous randomized controlled trials to be most effective, we know it’s really hard work. So what Equip does is support families in practical ways. People have not been getting it, even though FBT has been around for 20 years, because of the ongoing problem we have in academia. Things live in these beautiful research labs and it takes a long time for them to get out and in use by the community.
Kennedy: Well I love the idea – what a radical idea – that these are family illnesses. As someone who’s in recovery myself, if I don’t have all of my family growing with me in this, as we call them in my recovery, my trudgers, doing this on your own or in an isolated way belies the nature of these illnesses that thrive on secrecy and isolation.
Parks: I love that you recognize the “F” in family, as of course you need your environment. Sometimes people hear the F in family and they think, oh yes, because family caused the eating disorder, they have to be involved. That’s not true at all. That F in family isn’t just for structuring your home environment for health, it’s also about giving you a reason to recover. It’s being with siblings, it’s being at Boy Scouts, it’s playing soccer, it’s spending time outside of treatment and building a life worth living.
Saffran: Yes! And we know that eating disorders have some of the strongest genetic and neuro-biological underpinnings of any mental illness. So it’s really not that people are choosing not to eat and engage in pro-health behaviors. It’s that their brains are literally not letting them. And put that way, it’s not only ineffective, but frankly, it’s kind of cruel to treat eating disorders as individual illnesses. When I was deep in my illness, there were certain points where for a long period of the illness, I did not want to get better, I wanted to be sick forever and that wasn’t my failing. That’s part of the illness. That’s a core part of an eating disorder – not knowing how sick you are and not wanting to get better.
I needed my family members to take that control so that my brain wouldn’t have to fight it every single meal. I describe eating disorder recovery as actively hating myself for an entire year, probably more than that, and having to do the very thing that I feared most every day, multiple times a day, oftentimes six times a day.
So just the simple act of having someone in my corner who says, “I’ve been there. I get this. Keep going. It’s possible. It’s worth it. I know how hard it is, but you can do this,” is invaluable.
Kennedy: In my life as someone suffering from addiction, I had these great labels. I was an asthmatic. I had these operable tumors and skin cancer, the whole thing. But you had protocols around all of these other illnesses and you could treat all of them collectively in isolation. But with mental illnesses, no matter what illness it is, it’s all encompassing because it impacts the rest of your health in a way that no other illness does.
Parks: I love that because it’s recognizing that there’s no human on this planet who only has one thing going on with their life. We need to treat everything at the same time, be it your chronic pain, depression, urges to use substances or your food insecurity. And there are other social issues. It could be marriage difficulties. It could be learning disorders. We need to treat those at the same time that we’re treating the eating disorder so that someone’s entire self is getting better.
Kennedy: Yes. Something like diabetes, you don’t wait till you have to amputate a leg or go blind. But with mental illnesses and certainly with eating disorders, we wait until it becomes such a pathology and such a crisis. What literacy is needed so people can appreciate how life and death eating disorders can be?
Parks: I love this question. We talked about patients and their families, we talked about payers, but there’s a third group and that is providers. Right now, if you go to a pediatrician and you are 15 to 25 years old, a thin, white, middle to upper middle class, cis-gendered female, you might get diagnosed with an eating disorder. But if you’re male, they probably won’t catch it. And what a lot of providers don’t know is that up to 40% of people with eating disorders are male. We also know that eating disorders affect people equally across all races and ethnicities. They affect people who are trans at a higher rate than cis-gendered individuals. And most providers overlook people with eating disorders who are in average weight bodies. You can’t tell by looking at them.
Saffran: What comes back to me is we really need more education around these being brain-based illnesses. So much of the stigma about eating disorders and substance abuse really is that we blame the patients tremendously. And we still think that you chose to do this, you can choose to get out of it, and this is your fault. So there’s not a lot of empathy there. We need to educate — you had a genetic predisposition, it’s a brain-based illness. It’s not your fault at all. And guess what? There’s evidence-based treatment.
In our treatment, we utilize our understanding of the temperament traits that enable you to be vulnerable to an eating disorder and how you can actually use those to go on and be really productive in life. P.S., I think I’m a pretty good example of that – of channeling some of the type A perfectionism and anxiety into being really productive. It’s a much less stigmatizing way to view the illness and a much more hopeful one at that.
Kennedy: I really love this move towards brain plasticity and the literacy around being able to rewire your brain at any age and that you can take your old default mode of acting and behaving and change it.
Parks: And I think many times parents are receiving the message: you’re to blame. This is your fault your kid has an eating disorder. You need to get out of the way and we’ll help your child for you. That gets reinforced by our culture, this idea that as parents, we must’ve done something wrong and that’s why our child is struggling, even though there’s no data to support that. And I think we need to get past this blaming of the parents mentality in our culture so we see family therapy for depression, family therapy for anxiety, family therapy for eating disorders.
Kennedy: Yes. The military, for example, our special forces, they focus on helping people who have intrusive and obsessive compulsive thinking. The reason they do is because it’s human nature, and if they don’t correct it, that special operator can’t run and jump out of the sky and swim in the ocean and do all these great physical feats. I wish we had that kind of military perspective on this because mental health isn’t about saving people who are “weak.” It’s about people finding their strengths and exercising those strengths.
Parks: Yes. And at Equip, in addition to family-based treatment, the other foundation is another acronym here, DBT, which stands for dialectical behavior therapy. What we’re doing is teaching skills that recognize that while life is full of joy, life is also inherently full of pain. You will care for ailing parents. You will experience losses in your life. There’s going to be moments of both small and big suffering in everyone’s life. How can we, like you’re saying what the military, prepare people for those? Let’s not wait for an awful moment in life to destroy someone before we give them help. How can we prepare them for the ups and downs of life?
So we agree with you wholeheartedly that getting someone better from an eating disorder isn’t just about the eating disorder. It’s about: how can we equip them for the rest of their lives to tolerate the ups and downs of this wonderful, difficult world we live in without experiencing relapses.
This article was condensed for clarity. Kristina Saffran is an Ashoka Fellow.