On January 15, 2016, Johnson & Johnson and Janssen Neuroscience hosted the first-ever leadership summit on eating disorders, a meeting of diverse leaders from the U.S. eating disorder community with the goal of finding ways to unite forces in order to better serve patients and their families.
Eating disorders have the highest mortality of any mental illness, according to the National Association of Anorexia Nervosa and Associated Disorders, due to the strain on the body, the frequent comorbidity with mood disorders, and a high suicide rate. The prevalence of eating disorders has grown in recent years across all social classes and countries, says the NIH. They are more common than Alzheimers’ and autism, more deadly than drunk driving, and more costly than depression and anxiety. Like other mental illnesses, they have an impact beyond the patient to the whole family and to the communities in which they live and the organizations in which they work.
However, stigma and low public awareness around this group of diseases remains a problem, research is poorly funded, and insurance coverage and treatment options are inadequate.
A key factor behind the lack of progress is that the eating disorder community is fragmented and does not speak with a single, commanding voice, nor does it have an agreed-upon common strategy.
That’s partly because eating disorders are exhausting for patients and their families. Treatment can last a decade or more, marked by episodes of suicidality, fights with insurance companies, familial upheaval, and trial-and-error treatment in an area with too little hard data.
The fragmentation is also due to the fact that many of the players are relatively new – thirty years ago there was virtually nothing for patients, and today treatment paradigms and insurance coverage are still evolving.
To address this fragmentation the “Eating Disorder Leadership Summit” included association presidents, CEOs of leading providers, trailblazers in eating disorder law and in health communications, the developer of an exciting new mobile app for patients and their clinicians, and representatives of patients, families and insurers. The Summit included early pioneers in the field as well as many of the next generation of emerging leaders. And participants came from every corner of the country, from Silicon Valley to New York City, from Minnesota to Florida.
The Summit began with inspiring stories and lessons learned from Autism Speaks and the Elizabeth Glazer Pediatric AIDS Foundation, two organizations that are widely recognized as among the most successful at advancing patient care and outcomes in their respective areas. The Summit also heard a “call to action” from Tom Insel, head of Google’s mental health division, Verily.
Summit participants discussed how they could apply some of the lessons learned to take their efforts “to the next level” to better fight stigma, support early intervention, compete for scarce resources, speak with one voice, and speed the day when every patient has adequate insurance coverage, effective treatment backed by robust research, and supportive government, corporate, and educational policy. The participants agreed to collaborate on three core areas: communications, fundraising, and advocacy.
To pursue these outcomes, the participants established an informal leadership structure and a timeline for action, including a midyear working session to be held on the margins of the International Conference on Eating Disorders in San Francisco in May 2016. They are also planning to hold a year-end meeting at Verily (formerly Google Life Sciences).
Time will tell just how the first Eating Disorder Leadership Summit changes the course of history for people with eating disorders. But needed change is in the works, and it was a privilege to join in concerted action with the courageous founders and emerging leaders who are trying to address the devastating, costly, and often overlooked impact of eating disorders.
Craig Kramer is Mental Health Ambassador, Neuroscience External Affairs, and Chair, Global Campaign for Mental Health, Johnson & Johnson. He and his daughter Katharine discussed their family’s struggle with eating disorders on the J&J Parents blog last year.