taking eating disorders to the Hill

Over 100 grassroots lobbyists converged on Capitol Hill last Thursday with The Eating Disorders Coalition (EDC), pressuring their representatives to co-sponsor the Federal Response to Eliminating Eating Disorders (FREED) Act. Introduced by Representative Patrick Kennedy (D-RI) the FREED Act is a comprehensive bill that provides federal action for research, treatment, and education/prevention of eating disorders. The EDC is an umbrella advocacy organization seeking to advance federal recognition of eating disorders as a public health priority.

While an estimated 9 million Americans suffer from bulimia nervosa, anorexia nervosa, binge eating disorder, and eating disorders not otherwise specified (EDNOS), research remains drastically underfunded and the genetic predispositions to eating disorders remain largely unexplored. Over 50% of factors that make one vulnerable to eating disorders are hereditary. More to the point, two people may share the same environment, but only one with certain genetic susceptibilities will develop an eating disorder. It was once explained to me that eating disorders are relationship disorders—relationships with self and others. As Dr. Lisa Lilenfeld shared at the FREED Act congressional briefing, “put someone with an eating disorder on a desert island alone, that person will still have an eating disorder.” Additionally, eating disorders impact males and females alike, with a previously understood ratio of 10:1 now approaching 3-4:1. Yet the stigma of eating disorders as passing phases or afflictions of the superficial and stupid cripple funding for research and awareness, keeping the problem in the closet and unaddressed—hiding the fact that eating disorders have the highest death rate of any psychiatric illness. Consequently, FREED includes provisions to determine the prevalence, incidence and correlates of eating disorders, as well as more accurate mortality rates.

While the bill itself is an exciting advance in promoting science over stigma, participants in the lobby day had their own telling stories to share. One recovered anorectic explained that, despite her doctor’s warning that her parents should prepare for her death, her insurance would not cover hospitalization unless she lost more weight. Fortunately, her parents were able to use retirement savings and take money out of their home. Another recovering bulimic shared concerns that none of her in-network therapists had any specialization in eating disorders at all. While the Paul Wellstone Mental Health Parity made some progress, the bill still leaves open the opportunity for insurance companies to decide who gets money and how much. Under these conditions, insurance companies undermine the advice of doctors and implement their own ambiguous criteria in determining coverage.

While eating disorders may be expensive to treat, the economic burden is even greater when these illnesses go under-treated or ignored. The lack of access to modern, science-based treatment means that thousands of families are spending thousands—and sometimes hundreds of thousands—of dollars on care models that simply do not work. The research portion of the FREED Act includes an economic analysis to determine years of productive life lost, missed days of work, reduced work productivity, costs medical/psychiatric treatment, prescription medications, hospitalizations, costs of other comorbidites, and other costs to society and family.

Considering these factors, it is fitting that The FREED Act comes into play during political discourse favoring prevention as a healthier and more cost-efficient plan over treatment after-the-fact. This specifically involves better training for professionals dealing with children and adolescents, and reconsideration of the way that BMI is discussed, measured, and reported in schools. Various legislative assistants commented that certain provisions of the FREED Act could feasibly be incorporated into larger healthcare reform packages to come. With time, increased visibility, research and education can combat harmful stereotypes that create barriers to information, care, and the willingness of survivors to share their experiences. Having faced the difficulties of recovery myself and as a junior board member of the EDC, I was touched by the turnout of the event and the candid stories of the participants. However, I will admit that I was struck by the male to female representation. As the lobby day was dominated by women, I milled over two thoughts. First, how perceptions of eating disorders as (upper-class, white) female neurosis create a cultural climate wherein male sufferers are less likely to come out and advocate for themselves. And secondly, even if more women suffer, where are the fathers, brothers, husbands, boyfriends and male friends who know first-hand how scary and painful these diseases truly are?