Guest blog: Lived experience with an eating disorder led to life-saving treatment
Tue, 02/28/2023 – 10:20
I was 10 years old when I was diagnosed with anorexia. In the years after, I cycled in and out of treatment. I was hospitalized four times for a total of seven months, with the eating disorder quickly regaining control shortly after each discharge. When I began to relapse once again after the final hospitalization, my parents – terrified and desperate – presented me with a choice: I could go to a treatment facility on the other side of the country, or I could stay home and try a new approach: family-based treatment (FBT).
FBT saved my life. As I’ve learned in the years since, it’s the only evidence-based treatment for eating disorders in young people. It is rooted in the idea that families are best suited to help their loved ones through recovery, and it forced me and my family to confront my anorexia together. It was the hardest thing I’ve ever done, and it worked.
In some ways, my story is quite common: 30 million Americans will be affected by an eating disorder in their lifetime. But in other ways, it’s startlingly unique: 80% of people struggling with an eating disorder never get treatment, and of those who do, very few get effective care that leads to recovery. The reasons for this are multifold. Many people fall through the cracks of treatment due to pervasive stigma and stereotypes about who gets eating disorders (hint: it’s not just thin, affluent white girls). Traditional treatment requires a young person to uproot their life and go to a physical location, which isn’t geographically or logistically feasible for many families, and the costs are prohibitive. What’s more, these treatment centers don’t always use evidence-based treatment. Patients leave only to come back.
This is a grave problem. Someone dies every 52 minutes as the result of an eating disorder, and the crisis is only becoming more acute. There’s been a 70% surge in reported eating disorders since the start of the pandemic, and they’re hitting kids younger and younger.
FBT helped me reach two life-changing things: long-term recovery and a life mission of making eating disorder treatment accessible to everyone who needs it. At 15, once I reached recovery, I started Project HEAL, which is now the largest grassroots eating disorder nonprofit. But after a decade, I realized that plugging holes in a broken system wasn’t going to help the millions struggling. Rather than working within the constraints of the current eating disorder treatment landscape, I decided to build the treatment that patients and families desperately needed but didn’t yet exist.
To take on this ambitious goal, I joined forces with Dr. Erin Parks of the UC San Diego Eating Disorders Center, who had over a decade of clinical and academic expertise. She had also been trying to plug holes in the system using the FBT model, but knew that she needed to think bigger to get help to everyone who needed it. Together, we designed Equip to be what status quo treatment was not: accessible and effective.
To tackle that first element, we made Equip fully virtual, which research shows is as effective as in-person care. We also prioritized insurance coverage, partnering with more than 13 major commercial plans and Medicaid so that money wouldn’t keep families from care. Our price point is also a fraction of the cost of residential treatment.
As for that second element, we built upon FBT, pairing each family with a dedicated five-person provider team that provides the comprehensive, encompassing support they need. That team includes a therapist, dietitian, and medical provider, as well as peer and family mentors – people who’ve been through treatment and made it to the other side. We built a robust and independent research team to constantly evaluate and improve upon our approach, and it’s working: A full 92% of our patients are getting better.
Equip didn’t exist when I needed help, but I was lucky and privileged enough to have a family who could clear the hurdles to effective treatment. Their efforts made my life today possible. But many don’t have that luck and privilege, and so every day at Equip we work to tear down more hurdles. And once they’re all clear, and everyone has access to the treatment they need, the possibilities for each of those lives will be endless.