Kristina Saffran is expanding access to quality treatment for the millions of Americans who suffer … [+]
From age 10, Kristina Saffran suffered from an eating disorder. After finally getting good treatment and recovering, she started Project HEAL to expand access to care, making quality treatment available and affordable to all. Ashoka’s Simon Stumpf spoke with her to learn more about her journey and what’s ahead.
Kristina, how many people suffer with this illness?
Ten percent of Americans – five million people each year, 30 million over a lifetime. After opioid use disorder, eating disorders have the highest mortality rate of all mental illnesses, largely driven by the high suicide rate. There’s an unfortunate stigma that this is a rich white girl problem – and that’s the group that tends to get treatment, so the stereotype is perpetuated. But this illness affects folks pretty equally across race, class, ethnicity. A third of the sufferers are men. The majority of people who suffer are not underweight – you really can’t tell just by looking at them.
What treatment options are there and do they work?
People with eating disorders require specialized outpatient treatment from a trained and coordinated multidisciplinary care team. Behavioral approaches – like cognitive behavioral therapy and dialectical behavioral therapy – that focus on making tangible changes today, work best. Family-based treatment has become the leading treatment for adolescents with eating disorders. It’s a simple treatment that says: parents are not to blame, and are actually the best assets in helping their kids to recover. We also know that just being underweight for your body (which can look different on different people – healthy bodies come in all shapes and sizes) increases anxiety, depression, and eating disorder symptoms and behaviors, so the evidence says to treat those behaviors first. Finally, not being motivated to recover is a core part of the eating disorder, so peer support is critical in keeping people engaged in treatment.
Who has access to treatment?
This is a huge problem, and it’s the one we’re focused on. 80% of folks do not get any treatment whatsoever, and only 1% get really quality treatment. Why so few? Cost is a big hurdle, especially because insurance has not adequately reimbursed for this. Even for people with mental health benefits, specialized eating disorder providers are rarely in network, and can easily cost hundreds of dollars each week. In order to prevent relapse, people with eating disorder should really be in outpatient therapy for at least six months to a year, so you can see how this becomes incredibly cost prohibitive. For those who do get treatment, many end up cycling in and out of intensive residential care centers, unable to find and afford resources and support to help them stay well at home.
What was your experience of ED and recovery?
I was diagnosed with anorexia when I was 10, and struggled throughout my adolescence. I spent my entire freshman year of high school in and out of hospitals, and sadly, I began to love inpatient treatment – it was safe, people understood me, and I didn’t have to deal with my triggers. The hard part was coming out and maintaining recovery in real life. At 15, I was very fortunate that my parents were introduced to family based treatment and had the means to pay for it, and that was my road to recovery. As I began to recover at home, life began to take over and drown out my eating disorder voice. As I developed friends and hobbies and interests, there started to be real consequences to relapsing.
Still, I always say recovery was the single hardest thing I’ve ever done. I basically hated myself for an entire year, and still had to do the thing I feared most every day, multiple times a day. I credit peer support with staying in recovery. As my health improved, I reconnected with a friend I met in treatment. We helped one another get better, and at some point, our friendship shifted from issues we were having to broader issues in the system, especially the access issue. We started Project HEAL at that point – I was 15.
Your focus now?
Access still, but with new angles. We’re working with The Kennedy Forum to develop an in depth understanding of all the barriers to treatment access for people with eating disorders – which states, insurance companies and levels of care are particularly problematic, and how does race, ethnicity, income, gender, and body weight factor in. We’re also focusing on quality of care. It’s not enough for people to have access to any treatment, they need access to quality treatment that will keep them well in treatment and long after treatment ends.
We also know that clinical treatment is only one piece of the recovery puzzle. We spent four months listening to our community members, these 40 chapters, these 100,000 patients and families across the country. We asked them, “What was the most important thing in your recovery?” They said, “Other people who’ve been there. Other people who understand my brain and can really show that recovery is not only possible but really worth the hard fight.” We built our Communities of Healing program in response and it has been a tremendous success.
What about integrating new research?
We believe in rigorously evaluating everything we do. We engaged the research team at the Columbia University Center for Eating Disorders to do a randomized controlled trial on Communities of Healing, and early results look extremely promising. We’re now working with the EAT lab at the University of Louisville to collect data on treatment access barriers. I’m particularly proud of the relationships we’ve built with the academic community, which has resulted in a much greater appreciation for the role of patients and families in the recovery process.
This is a field with fewer human resources than are needed. How do you overcome that?
Right. In many states, there are literally no eating disorder providers. And even in a city like New York or San Francisco, it can be hard to find specialists covered by insurance, and almost impossible to find a full and united care team.
There are a few solutions here. 1) Democratizing access to quality eating disorder training. Most mental health professionals receive little to no eating disorder training in school, and our current trainings remain expensive and inaccessible for most clinicians. 2) Task shifting. The medical and psychiatric establishment has been guilty of perpetuating the idea that only experts with certain letters behind their names can deliver evidence based treatments. There’s great evidence that non-professionals and lay people can deliver treatments just as effectively, and this greatly expands the reach of these treatments. 3) Telemedicine. I think we’ll see tremendous adoption of telemedicine treatment of eating disorders in the coming years, and in turn, greater retention and engagement in treatment.
What looks different in 10 years?
I am incredibly optimistic about the future of eating disorder treatment. I think we’ll see greater partnerships with insurance carriers around value based care arrangements, because they are beginning to realize that untreated and poorly treated eating disorders are incredibly costly. Intervening early and reimbursing for quality outpatient treatment and relapse prevention not only gets people well and keeps them well, but is also cheaper! We’ll see more people use telehealth as a primary treatment tool, enabling them to stay in their homes and communities and start to build a life worth living.
I think we’ll continue to embrace the importance of people with lived experience in the recovery process, and compensate individuals in recovery and carers for the critical value that they bring to treatment. And I think we’ll see the full spectrum and diversity of eating disorder sufferers – people of all races, ethnicities and income levels, men, people in larger bodies, older people – getting identified early and getting access to the quality treatment they deserve. In 2030 I hope we will have fully shattered the myth that eating disorders are a rich white girl problem.
Kristina is a 2019 Ashoka Fellow. Read more about her and her work here. This interview was condensed by Ashoka.