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

The most famous celebrity patient of recent years is Lance Armstrong, who survived advanced testicular cancer, returned to cycling, and won the Tour de France seven times. He also became an activist, formed a foundation, spoke widely about the disease, and published a bestselling book about his experience.

Figure 1.

Barron H Lerner

Johns Hopkins University Press, $25, pp 352 ISBN 0 8018 8462 4 www.press.jhu.edu/

Rating: ★★★★

But the first celebrity patient, says Dr Barron Lerner, was Lou Gehrig, the famous American baseball player, who became ill with amyotrophic lateral sclerosis—still known in the United States as “Lou Gehrig's disease”—in 1938 and died in 1941. Gehrig was a star hitter for the New York Yankees, a tall, strong, shy man nicknamed “the Iron Horse” for his endurance.

During the summer of 1938, he was in a slump, but played better toward the end of the season. Over the winter he became clumsy, and he was dropped from the line up after a poor performance in spring training for the 1939 season. The doctor who diagnosed his condition said Gehrig's playing days were over, but gave a hopeful prognosis. The doctor's public statement was front page news across the United States. Gehrig made a touching farewell speech to a stadium packed with his fans.

In this readable and thoroughly researched book, Lerner, an associate professor of medicine and public health at Columbia University in New York, describes 13 patients whose illnesses became front-page stories.

Sometimes their stories were news because they were celebrities, like Lou Gehrig. Others, like Barney Clark, who received the first artificial heart, were ordinary people whose illnesses made them famous. Although all the patients are American, their stories and the way they were covered in the media reveal a universal tale of how public and media attitudes toward illness have changed.

The author groups the cases in roughly chronological order, from 1935 to 1950, from 1970 to 1980, and between 1980 and 1995.

Patients in the first group, such as Gehrig and John Foster Dulles, the secretary of state who died from colon cancer, were already well known and became “celebrity patients” because they were willing to go public with their illnesses, which could not really be concealed. The press reported mostly what the patients and their doctors told it, but the public also learnt about previously unknown subjects, such as experimental treatments, risks, and curability.

Figure 2.

Actor Steve McQueen looked for unorthodox treatment for his colon cancer

Credit: KOBAL COLLECTIONS

Figure 3.

Cyclist Lance Armstrong survived testicular cancer to win the Tour de France seven times

Credit: HARRY CABLUCK/AP/EMPICS

The second group, including Morris Abrams, a lawyer who sought out innovative therapies for his leukaemia, film actor Steve McQueen, who went to Mexico for unorthodox treatment of his colon cancer, and Rita Hayworth, who developed Alzeimer's disease, became ill when activism by patients or family members was becoming common in health care and in other areas of American life. Abrams and McQueen challenged their doctors and looked for alternative or “cutting edge” treatments. In Abrams' case it worked and his leukaemia was cured.

The doctor-patient relationship was changing from one controlled by the physician to one where patient decisions were important. Another case in point is that of Lorenzo Odone, whose parents rejected orthodox treatment of their son's genetic disorder and created “Lorenzo's oil,” which inspired the eponymously named Hollywood movie.

In the third group the case of Barney Clark, the recipient of an artificial heart, raises questions of informed consent. Surely Clark, a dentist, was well informed and signed several consent forms, but did he or his doctors know what they were getting into?

In another case, a young woman called Libby Zion died after a brief, mysterious fever and illness in one of New York's leading hospitals. Her father was a prominent lawyer and journalist who began a crusade to change the training of young physicians. Their hours were too long and they lacked supervision by experienced physicians, he said. The result was a change, still imperfectly implemented, in the training of young physicians in the United States.

Dr Lerner, whose previous books include The Breast Cancer Wars (review BMJ 2001: 323; 115), writes that when individual patients face decisions about treatment, many Americans listen to the experiences of celebrities.