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    Monday, February 05, 2007

    The Celebration of Illness: To be famous and to be sick is to have a very special niche in the world of patients. The world listens to sick celebrities. When Michael J. Fox maks public apparances in support of embryonic stem cell research, we don't just see a Parkinson's patient, we see the beloved characters from his movies and television series. Who wouldn't vote to save Alex P. Keaton? The power of celebrity advocacy has become so entrenched that it's become a marketing ploy.

    But sometimes, it's the illness that elevates a person to the status of celebrity. Few people have heard of adrenaoleukodystrophy, but many have heard of Michaela and Augusto Odone, who became vocal advocates of a certain treatment for it that has become known as Lorenzo's Oil. AIDS is a special diseas, it has both humble celebrities and famous celebrities.

    Dr. Barron Lerner turns a historian's eye on this phenomenon in his book When Illness Goes Public, which not only maps the history of the trend, but takes a close look at the myths and facts of some of the twentieth century's most public illnesses, from the days of the very private and quiet Lou Gehrig to the activist/celebrity paradigm.

    I found the most fascinating chapter to be the story of the Libby Zion case, suitably titled "You Murdered My Daughter." I began medical school in 1984, the same year that Libby Zion died in a New York City Hospital, and though I was hundreds of miles away, her case cast a shadow on my medical education for its entirety. "Remember Libby Zion," was a phrase uttered throughout my formative medical years by my senior residents and attendings, as in "be extra careful, don't make a stupid mistake, don't be afraid to ask for help and advice no matter how late the hour." For those of you not familiar with the case, Libby Zion was a young woman who was admitted to the hospital with a fever and ear pain. The pain was disproportionate to her physical findings, which is one of the reasons she was admitted, but within hours of being admitted, she died from an interaction between the anti-depressant she was taking and the intravenous pain medication. Her father was not only a prominent lawyer, but also a former writer for the New York Times, and he used every connection at his disposal to seek revenge justice for his daughter. He waged a very public campaign against the hospital and the doctors in the pages of the newspapers, even convincing the district attorney to charge her physicians with murder. The grand jury declined to indict, but they did condemn the system of medical education. The message was overwork killed Libby Zion.

    Except that it wasn't. My impressions of the Zion case developed in real time, as it happened, based on media reports and medical journal editorials, but Lerner presents the case as a historian would, reconstructing the facts from court testimony and documents. Neither the intern nor the resident felt overworked or particularly tired that night. I had always assumed that Libby Zion didn't tell the residents she was on an anti-depressant and that she had also not disclosed that she had taken cocaine. According to Lerner, Zion probably didn't use cocaine, and her doctors did know that she was on an anti-depressant. The intern had looked up the pain medication to make sure it wouldn't have an adverse effect with the several medications her patient was taking, but had simply overlooked the listed interaction with the anti-depressant. It was the kind of mistake that could have happened to anyone in that place and at that time.

    And yet, that very human and now public mistake has led to much needed reforms in medical education as well as systems to reduce errors of drug-drug interactions. Some good came from all that horror. What Lerner's book provides us is a clear-eyed history of how we got there that until now has always been obscured by one agenda or another.

    He does the same with other public illnesses of the past century - Lou Gehrig, John Foster Dulles, Rita Hayworth, Barney Clark, and yes, the Lorenzo's Oil story, and in so doing opens our eyes to how much the reality of a case is obscured by the narrative we choose at the time events unfold; especially when those narratives become Hollywood movies. And he does so in language that is accessible, entertaining, and riveting. This isn't a dry academic history of medicine tome, but an engaging account of the facts and influence of celebrity illness on our culture and thinking.

    It's a book well worth reading, if nothing else as a reminder that the public face of illness is not the same as its private face.

    posted by Sydney on 2/05/2007 07:59:00 AM 1 comments


    I really enjoy your style, your stories, and your writings.


    By Blogger The Anonymous Medical Student, at 5:55 PM  

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