When illness severity and research dollars do not align: are we overlooking eating disorders?

When determining funding allocated for psychiatric research, several important factors warrant consideration, including scientific opportunity, the status of existing evidence, public health need, disease severity, economic‐related burden of illness, and the scope for high impact research1. Eating disorders are among the most pernicious and complex psychiatric disorders, for which the precise etiology remains elusive, but relatively little funding has historically been allocated to their research.

Approximately 20 million women and 10 million men in the US can be diagnosed with a DSM‐5 eating disorder (i.e., anorexia nervosa, bulimia nervosa or binge eating disorder) at some point during their lifetime, many of whom are not treated by specialist providers. Lifetime prevalence estimates range from 0.9% for anorexia nervosa to 3.5% for binge eating disorder, and while some evidence points towards a gradual increase in the rate of new cases, empirical studies have struggled to discern what represents changing trends of incidence or an increased demand for treatment.

Anorexia nervosa yields the highest mortality rate of any psychiatric illness, demonstrating a six‐fold increase compared to the general population and a crude mortality rate of 5‐7%2. Even in non‐lethal presentations, eating disorders frequently run a chronic and relapsing course, which impart multi‐systemic organ damage, including cardiac abnormalities, structural and functional brain impairment, and bone disease. As such, up to 97% of those with eating disorders report significant functional impairment, which is comparable to autism and schizophrenia. Moreover, elevated psychiatric comorbidity is common, alongside a four‐fold increase in substance abuse, and a 57‐fold increase in suicidality relative to the general population3.

Despite the grave health‐related implications of eating disorders, treatment outcomes to date are modest. In adult presentations of anorexia nervosa, for instance, no gold standard psychological interventions or pharmacological treatments approved by the US Food and Drug Administration (FDA) have emerged. In adolescent presentations, the leading empirically supported intervention, family‐based treatment, typically yields long‐term remission rates of approximately 35‐40%4. Treatment outcomes for bulimia nervosa are similar, demonstrating remission rates of approximately 40% by end of treatment, in both adolescents5 and adults6.

Treatment costs are burdensome, with the cost of adequate treatment totalling approximately US$119,200 per patient, and an incremental cost‐effectiveness ratio of US$30,180 per year of life saved7. This is exponentially higher than per‐person treatment costs for schizophrenia and obsessive‐compulsive disorder8, and comparable to depression9.

However, funding for eating disorder research remains relatively low. A recent funding report by the US National Institute of Mental Health revealed that, across all psychiatric conditions, funding for eating disorder research was the most discrepant from the burden of illness they represent1. In 2015, the volume of federal support for eating disorder research equated to approximately US$0.73 per affected individual. In contrast, autism research was supported at a rate of US$58.65 per affected individual, and schizophrenia research at a rate of US$86.97 per affected individual.

In analyzing trends in funding for eating disorder research in other countries, similar patterns are evident. In Australia, government funding for this research equates to approximately AUD$1.10 per affected individual, which stands in marked contrast to research funding for autism (AUD$32.62 per affected individual) and schizophrenia (AUD$67.36 per affected individual). Similarly, government funding for eating disorder research in Canada equates to approximately CAD$2.41 per affected individual, relative to CAD$462.14 per individual with autism, and CAD$103.31 per individual with schizophrenia. Cumulatively, these data point towards a global trend in the underfunding of eating disorder research.

As psychiatry research moves toward the target of precision medicine, the subject of inquiry has shifted from a behavioral focus to a pathophysiological and neurobiological emphasis, and consequently research costs have increased. With the urgent need for improved treatment outcomes for eating disorders, coupled with the high risk for those afflicted, and elevated costs of care, the underfunding of research on these disorders is cause for concern.

Recent technological advances in neuroimaging and gene mapping offer much translational promise in developing precision treatments, although the preliminary insights gleaned from existing studies have not yet advanced treatment outcomes. Without recalibrating the volume of funding support directed to eating disorder research, targeted attempts to treat the most lethal of psychiatric presentations may likely be thwarted.

Stuart B. Murray1, Eva Pila2, Scott Griffiths3, Daniel Le Grange1
1Department of Psychiatry and Weill Institute for Neurosciences, University of California, San Francisco, CA, USA; 2Department of Kinesiology and Physical Education, University of Toronto, Toronto, ON, Canada; 3Melbourne School of Psychological Sciences, University of Melbourne, Melbourne, VIC, Australia