By Kristina Saffran
I was born into a loving family and had a happy childhood. I was also born into a family with an extensive history of obsessive-compulsive disorder (OCD), anxiety, and depression. When I was 10 years old, my babysitter went on a diet. I decided to try it too, and a few months later, I was diagnosed with anorexia nervosa. I spent the entire year of 5th grade seeing four physical and mental health care providers on a weekly basis, had a brief period of good health, and then relapsed at 13, spending my entire freshman year of high school in and out of treatment centers.
In today’s cultural and political climate, mental and behavioral health are receiving more attention than ever. However, our national conversation has yet to acknowledge eating disorders (EDs) as a widespread and serious mental health issue. Roughly one in 10 Americans – some 30 million people – have an eating disorder. People of all ages, genders, races, ethnicities, and socioeconomic backgrounds are affected. Eating disorders have some of the strongest genetic and neurobiological underpinnings of any mental illness and, after opioid use disorder, the highest mortality rate. Ten percent of patients will die from their illness, and another 30 percent will struggle with the illness for their entire lives.
The high mortality and morbidity rate associated with eating disorders stems in part from the fact that the prevailing model for treatment and recovery support is narrowly focused on one type of experience and environment: acute clinical care in a residential or in-patient facility, which can cost upwards of $30,000 per month. Yet for the vast majority of patients with an eating disorder, this type of treatment is neither affordable nor accessible: 80% of patients never receive treatment.
Insurance coverage for eating disorder treatment is notoriously complicated and insufficient, leaving patients and their families to battle unfair denials of care or face an early discharge before solidifying the gains needed for lasting remission. Out-of-pocket expenses can soar quickly, and many patients simply cannot afford the financial burden of their illness. Treatment centers also tend to be located closer to major urban centers, which are often out of reach for rural populations. Moreover, suburban and rural communities often lack nutritionists, psychologists, and other medical professionals who have eating disorder expertise in their local health care systems.
Recovery from an eating disorder is often a long and challenging process, requiring sustained commitment and professional treatment over the course of many years. Currently, more than 50 percent of patients relapse in the first year following treatment, and many of them end up in a repeating pattern of cycling in and out of intensive treatments.
Another major issue with treatment in acute settings is that not all patients need or are ready for that level of intervention. Many respond better to a less intensive first step into recovery than clinical treatment and would benefit more from support that integrates more seamlessly with everyday life and relationships, as they are also overcoming complicated cultural misconceptions that only white, affluent females have eating disorders. In reality, rates of most eating disorders are equal in White, Latino, Asian, and Black communities; most of them are not underweight; and one-third are men.
One of the reasons that eating disorders are so challenging to treat is that the desire to recover is often ambivalent at best. A core feature of the disorder is that patients don’t feel they’re sick enough to warrant help, and they don’t know if they want to give up their disorder. So when they are denied treatment from an insurance company because their weight isn’t low enough or they’ve “failed” in treatment before, or they have no in-network eating disorder specialist and go to a therapist who gives them weight loss advice– any of these situations can prevent them from seeking treatment for many more years, if at all.
I am incredibly lucky to have recovered, and I attribute my recovery to a few factors. One, I fit the stereotype of what someone with an eating disorder “should” look like, so my eating disorder was recognized and I got help more quickly. Two, I had great insurance and parents who could afford to pay for what my insurance didn’t cover. Three, I met a friend in treatment, Liana, and we supported one another in recovery. When we were 15 and in our recovery process, we decided we wanted to help others too. We founded Project HEAL to raise money for people who couldn’t afford treatment.
When Project HEAL began, we focused aggressively, but narrowly, on awarding grants to eating disorder patients who could not otherwise afford clinical treatment. To date, Project HEAL has enabled more than 100 individuals to receive comprehensive care, at a cost of roughly $15,000 each. Thanks to the generosity of our HEALers Circle (providers at all levels of care across the U.S. who donate care to our applicants), we’re able to “treat to outcome,” which means keeping people in care until, clinically, they are ready to step down, rather than having that decision made by insurance companies.
While we’re incredibly proud of the work we’ve done, we also recognize that funding individuals directly is not a scalable model, and we have begun working toward more systemic change. Since the passage of the Mental Health Parity and Addiction Equity Act (MHPAEA) in 2008, eating disorder treatment must be covered by insurers no more restrictively than they cover treatment for illnesses such as cancer or heart disease. Unfortunately, there is still a huge gap between awareness of the issue and enforcement of the law.
That’s why it is so important that everyone understands their parity rights. No one should be turned away from potentially lifesaving treatment because their insurance company illegally denied them care. Patients and their families must stand up for their rights and demand justice. We have to hold insurers accountable with one strong voice.
If you or a loved one is struggling to secure treatment for an eating disorder, visit www.DontDenyMe.org to learn about your rights and get connected to resources for filing an appeal and issuing a complaint against your health plan. To access treatment and recovery support for an eating disorder, visit www.theprojectheal.org.
Kristina Saffran serves as the executive director of Project HEAL. She was named a 2017 Forbes 30 Under 30 Social Entrepreneur and a 2018 Community Leadership Fellow and has spoken across the country on eating disorders, recovery, and launching a successful social entrepreneurship as a teen.
Note: This post is part of a series of blogs showcasing partners of the Don’t Deny Me campaign. The campaign empowers patients and their loved ones to report illegal insurance denials of mental health and addiction treatment, and fight for their parity rights. To learn more, visit www.dontdenyme.org.