When Illness Goes Public: Celebrity Patients and How We Look at Medicine (review)

When Illness Goes Public: Celebrity Patients and How We Look at Medicine is a well-crafted book by Barron H. Lerner, MD, PhD of Columbia University’s Mailman School of Public Health and the Center for the Study of Society and Medicine. It combines historical perspectives with enduring narratives of 13 celebrity patients. It shows how the issues of consumerism in medicine, patient rights, patient advocacy, research funding, fundraising, ethical principles and the role of media evolved.

Lerner’s 2001 book, The Breast Cancer Wars: Hope, Fear and the Pursuit of a Cure in Twentieth-Century America, published by Oxford University Press, received the William H. Welch Medal of the American Association for the History of Medicine, the Washington Irving Book Award from the Westchester Library Association and was named one of the 26 most notable books of 2001 by the American Library Association.

Funded by grant money, Lerner worked tirelessly with historians, librarians, archivists, and friends and family of the celebrity patients he discusses for five years. Intriguingly, the author reports sometimes finding it hard to distinguish between facts and myth when working on the story of a cultural icon’s illness.

Highlighted Stories

The man Lerner calls “the first modern patient,” the Yankee baseball superstar Lou Gehrig, did not receive quality care on time due to lack of public awareness about amyotrophic lateral sclerosis (ALS), the motor neuron disease now often referred to as Lou Gehrig disease. Gehrig’s illness was wrongly diagnosed as polio; additionally, Lerner reports, physicians who were less knowledgeable themselves acted paternalistically towards the Yankee slugger. The media, the public, and often his teammates proved their ignorance time and again. Through it all, Gehrig and his wife Eleanor functioned as symbols of hope for everyday people, maintaining “cautious optimism” to minimize false dreams of a full recovery. Lerner argues that through Gehrig’s public ordeal, two hot button topics—namely patients’ right to know and authenticity of research design— emerged as part of the national discourse on health.

Lerner recounts the history of another baseball player, Boston Red Sox centerfielder Jimmy Piersall (born in 1929), arguing that he was the first celebrity who used the media to his. Piersall became best known for his struggles with bipolar disorder, which were the subject of a 1957 movie Fear Strikes Out, also the title of Piersall’s book about his own life. Until that point mental diseases were never discussed in any detail in public. The 1950s and 1960s saw the transformation of the field of psychiatry through debates over treatment modalities. The role of biographies and the distinction between actual events and movie adaptations became evident. Unlike Gehrig, Piersall contradicted public images of his disease and of himself. For the first time people got the opportunity to hear the patient’s voice. Interestingly, Piersall also introduced celebrity endorsement and promotion for pay.

Photographer Margaret Bourke White embraced controversial, less publicized surgical procedure to treat Parkinson’s disease. Bourke White pushed for full disclosure, in an effort to fight the paternalism of physicians. Prefiguring modern chat forums, she was communicated with other patients through her photography and writings, sharing information, comparing symptoms, and predicting the outcome of her illness. She felt greatly optimistic about medical sciences, and therefore subjected herself to risky procedures. Ultimately, Lerner concludes, Bourke White’s story was inspirational but at the same time misleading. In her case, surgery and physical therapy for Parkinson’s disease proved to have created only a short-term placebo effect.

John Foster Dulles, Secretary of State under President Dwight D. Eisenhower from 1953 until shortly before his death from cancer in 1959, pushed for transparency in the government. In keeping with this approach, Dulles informed the public of his illness and publicly discussed state-of-the-art technologies. True investigative reporting took place with medical experts explicitly discussing prognosis and cure of cancer; religion and faith in medicine came to play...