While our society has been working to chip away at the mental health stigma, we still have much work to do. At least 30 million people in the US suffer from eating disorders, which have the highest mortality rate of any mental illness. That’s a shocking statistic and one that’s not frequently discussed in the broader mental health context.
At only 10 years old, Kristina Saffran’s eating disorder started with the seemingly innocuous action of trying a diet. She relapsed at age 13, endured multiple hospitalizations, and came face-to-face with the neurobiological drivers that were powering the disorder. In this dark place, Kristina and fellow recoveree Liana Rosenman became friends and allies. Two years later, these young ladies founded Project HEAL so that those without medical insurance or financial means could get treatment for eating disorders.
The organization requires a rigorous application process for funding, as well as a personal dedication and desire for help and recovery. It’s a hand reaching out, though, for those who remain in the grips of this powerful condition, with resources, peers and hope.
Saffran is currently serving as the Executive Director of Project HEAL. In 2017, Forbes named her a “30 under 30” social entrepreneur. She’s shared her thought leadership across the country and joined the stage for a recent Health 2.0 panel. InterbrandHealth’s Nicole Diamant had the opportunity to chat with Saffran.
Why has it been so difficult to shine a light on mental health issues and eating disorders?
One of the biggest challenges in the eating disorder community is the gross misperception that these are “white, rich-girl vanity issues.” In reality, eating disorders affect one in 10 Americans, have strong genetic and neurobiological underpinnings, and have the highest mortality rate of all mental illnesses. Further, eating disorders do not discriminate. They affect people equally across socioeconomic brackets, races and ethnicities: one-third of sufferers are male, one-third of sufferers struggle into old age, and the majority of people with eating disorders are not underweight.
What kind of change to our current healthcare system would most benefit those who suffer from a mental health disorder?
To start, we need greater enforcement of mental health parity. If you have insurance, you are entitled to treatment for your mental health. Since the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act was passed in 2008, insurers are legally required to cover mental health issues at the same rate that they cover physical health issues. However, the law is still poorly enforced—not only is insurance coverage incredibly complex to navigate, but insurance often denies care that people are entitled to, and very few realize that they have been illegally denied care. Navigating insurance and appealing denials of care is complex, time consuming and often costly. People who suffer with mental health conditions are often struggling simply with basic activities of daily living, and for many of these conditions, ambivalence about the need for treatment is a core feature of the disorder. For many, the added insurance barrier can be insurmountable.
Further, we need to look at the full trajectory of mental illnesses, and develop and fund more programs for early intervention and relapse prevention. For those with eating disorders, 80% of sufferers do not get treatment. Even for those who do, our current paradigm really focuses on the most acute stages of illness. We treat people in high levels of care (inpatient and residential centers) for a short time (30 days or less) when their symptoms are extreme and entrenched, and then discharge them to little support.
As a result, the relapse rate in the first year following treatment is upwards of 50%, with many sufferers ending up in a repeated cycle of relapse. Full recovery often takes years of hard work, and works best when we incorporate care into a person’s daily routine—working with outpatient specialists close to home, along with families, schools, peers, and community and cultural centers.
Project HEAL has a clear mission for care. What misperceptions about eating disorders are you hoping to change through greater awareness of your brand?
Project HEAL’s mission is to provide access to healing for all people with eating disorders. We believe that good treatment is crucial, and that everyone who needs it should be able to access it. We also believe that full recovery requires more than just clinical treatment. We support an international community of 100,000 individuals and families with eating disorders, spread across 40 chapters.
In 2017, we asked this community what made the difference in their recovery, and they answered loud and clear: other people who had been there. They told us they needed to connect with others who offered living, breathing proof that full recovery was not only possible, but really worth fighting for. Communities of HEALing—a nationwide 100% free peer support and mentorship program, where recovered peers support those earlier in the recovery process—is our response to that call.
Have innovations in digital health and technology shifted our ability to provide care for those with mental health or eating disorders?
Absolutely. While I don’t believe that technology will be a panacea, it has certainly enhanced our ability to provide care for those with eating disorders, primarily by increasing access and enabling us to assess and enhance the effectiveness of treatments. Our partner Recovery Record is a great example. Self-monitoring of eating, compensatory behaviors and mood have proven helpful in reducing eating disorder pathology, but before Recovery Record, there was no easy way to do this work.
Similarly, treatment teams had a poor understanding of how clients were doing outside of the office, and whether their treatment was actually helping clients get better. Recovery Record connects clients and their treaters on the same platform, and when utilized with a treatment team, has led to more positive clinical outcomes. Based on these findings, we’ve been using Recovery Record in our Communities of HEALing program, so mentors can see mentee symptoms and behaviors in real time and provide in-app feedback. The app has been downloaded by over 600,000 individuals with eating disorders. When founder and CEO Jenna Tregarthen learned that the majority of those on the app had never received treatment, she partnered with researchers at Stanford University to design a free 8-week self-help program for users.
Further, access to specialized care for eating disorders is a huge challenge. There is a shortage of specialists, especially outside of major metropolitan areas, and patients often fly across state and international borders to get the care they need. The emergence of telehealth has allowed us to reach folks in rural geographies, and for whom getting to a specialized clinic is not possible. We intentionally designed Communities of HEALing to exist primarily online, so we can reach sufferers who have traditionally lacked access.
Finally, technology—and especially social media—has enabled patient and care communities to thrive, leading to a tremendous reduction in stigma. Mental health can be lonely and isolating; the importance of seeing and connecting with others who have experienced similar struggles can be game-changing.
What are you finding most challenging at this stage of business development? What audiences are most crucial to your continued growth?
Project HEAL is growing tremendously, doubling our staff in 2018. We’ve greatly expanded the number of people we’re able to help, but we still have many communities to reach. The two most important things that will get us there are donors and partnerships with providers and the payor community.
The eating disorder nonprofit community is incredibly underfunded. For something that affects 30 million individuals and has the highest mortality rate of all mental illnesses, eating disorder nonprofits collectively raise less than $10 million annually. We are stigmatized even within the mental health philanthropic community: Eating disorders are incorrectly viewed as a niche, sociocultural issue. We need more prominent philanthropists, corporations, celebrities and leaders to get involved.
In addition to donors, partnerships with payers will enable us to help more individuals. We are currently conducting the first randomized controlled trial of peer support for eating disorders with researchers at The Columbia Center for Eating Disorder, to investigate its effectiveness and cost effectiveness as a relapse prevention and early intervention strategy. We’ve secured our first pilot with a large insurer in NYC to explore reimbursement of Communities of HEALing, and plan to develop more partnerships like this in the coming years.
Nicole Diamant is head of communications for InterbrandHealth.