The Legacy of Hope Summit

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“Do not be dismayed by the brokenness of the world. All things break. And all things can be mended. Not with time, as they say, but with intention. So go, love intentionally, extravagantly, unconditionally. The broken world waits in darkness for the light that is you.” L.R. Knost

On February 4, 1983, Karen Carpenter, one of the 20th century’s (and this country’s) most recognizable, prolific, and beloved music icons died at the age of 32. Her reported cause of death? “Heart failure resulting from ipecac poisoning”. Her actual cause of death? Complications associated with Anorexia Nervosa and Bulimia Nervosa. Historically, a high-profile celebrity death like Ms. Carpenter’s would serve to exponentially heighten public awareness relating to the culprit illness and act as a catalyst for fundraising efforts in support of medical and scientific research aimed at better understanding, seeking the early detection of, improving treatment protocols for, and ultimately eradicating and/or preventing the disease. Indeed, the historical landscape is littered with examples of that phenomena, particularly in the United States.

But, news about Ms. Carpenter’s illness and eventual death was different. Despite her substantial notoriety and the fact that, at least according to one biographer, hers was the first high-profile celebrity death caused by an eating disorder, Ms. Carpenter’s struggles and premature death did little to move the needle when it came to increasing awareness among the general public of these insidious, life-threatening diseases, let alone to prompt an outpouring of research funding aimed at identifying their root causes and educating health care professionals as to what could be done to more effectively treat them and prevent or temper their deadly proliferation. Instead, it resulted in the promulgation of what would turn out to be the first of many misguided, uninformed, and stigmatizing myths concerning these diseases, namely that “such illness[es] can be traced to the failings of mom and dad”.

Troublingly, in the nearly 4 decades since Ms. Carpenter’s death, proportionately little meaningful progress has been made in areas that affect virtually all eating disorder sufferers, including: (1) public awareness; (2) enacted state and federal legislative; (3) the availability, accessibility, and affordability of quality care; (4) the development of evidenced-based standards of care; (5) research and research funding needed to, among other things, first define and then refine those standards; and (6) strategies aimed at early detection, intervention, and prevention. Not surprisingly, during that same period, the number of people battling these often deadly diseases worldwide has increased in every decade and it continues to do so at an alarming rate. In fact, left unchecked, their prevalence may soon reach epidemic proportions and compete for a spot as this country’s number 1 public health crisis.

And yet, there still is no public outcry that something be done; no outpouring of state, federal, and private research funding; no insistence that life-saving care be afforded to and affordable by those who desperately need it; no teeth-baring state or federal legislation ensuring, among other things, fair insurer reimbursement for such care; and no nationwide educational initiatives aimed at early detection, intervention, and, ultimately, prevention. That’s about to change. Later this week, 24 highly-respected eating disorder experts and thought leaders will convene in pursuit of several ambitious goals: (1) to reach a consensus on initiatives that will have a significant impact on those afflicted with eating disorders; (2) to recommend concrete strategies for achieving those goals; (3) to anticipate likely obstacles to their achievement; and (4) to chart a course for navigating and overcoming those challenges.

Enough is Enough. It’s time to unite – for change, for healing. It’s time to leave an indelible legacy of hope.