How celebrities should go about making their health recommendations.

How celebrities should go about making their health recommendations.

How celebrities should go about making their health recommendations.

Health and medicine explained.
Dec. 9 2009 7:00 AM

Doc Hollywood

If celebrities insist on using their fame to bring awareness to health problems, they should follow these guidelines.

Suzanne Somers. Click image to expand.
Suzanne Somers

Cancer has a cure. That breakthrough medical news is not the result of grueling medical research published in the New England Journal of Medicine. Instead, it is brought to us via fading actress-cum-Thighmaster queen-cum-New Age health guru Suzanne Somers. In her new book, Knockout: Interviews With Doctors Who Are Curing Cancer and How To Prevent Getting It in the First Place, Somers claims, "There are doctors out there who are curing cancer," contrasting her findings with the "debilitating, often deadly fraud" of mainstream medicine that wants "to keep cancer alive and well" since it's "big business" for doctors and pharmaceutical companies.

While many surely see Somers as a quackadoo, more than a few may see her as a pioneer: Upon its release, Knockout became a New York Times best-seller and ranked No. 284 in sales on Amazon. Not bad for a fading actress-cum-Thighmaster queen-cum-New Age health guru.

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Somers is just the latest in storied history of stars who have shone a spotlight on medicine. The list includes fellow celebrities Christopher Reeve (spinal cord injury) and Farrah Fawcett (anal cancer), as well as famous athletes like Magic Johnson (HIV) and Lance Armstrong (testicular cancer). For them, and countless other celebrities who have dished about disease, the public has been, and remains, a keen and attentive audience.

There are many reasons celebrity health stories resonate with us. Since they always seem to be in front of us—on TV, in the movies, on the Web—they seem familiar, even trustworthy. Their stories of illness are very emotional, earning them our sympathy and empathy. Then there's their aura of invincibility: Whether it's the image of Armstrong winning the Tour de France (seven times!) or Reeve soaring as Superman, their swing from health to illness makes them underdogs we root for. Finally, celebrities are effective. Studies have shown that celebrity disclosure of an illness can increase public interest in the specific disease and lead to changes in the public's behavior. Many go on to form organizations and raise millions of dollars in support of research into their diseases.

Still, celebrity medical advice can be hazardous. Their messages have led some doctors and patients to make inappropriate health decisions, at times increasing risks for patients and driving up health care costs. Their advocacy, while informative and inspiring, often oversimplifies complex medical issues. Finally, the first-class advantages most celebrities enjoy can create false hope for their economy-class public.

Perhaps the best example of both the benefits and risks of celebrity medical advice is journalist Katie Couric. After her husband died from colon cancer at the young age of 42, Couric took up the fight against the disease. In 2000, she underwent a colonoscopy on TV as a way of urging others to get screened. The public followed: A 2003 study showed a 20 percent increase in colonoscopy rates in the months after Couric's TV segment. The study's authors labeled this phenomenon the "Couric Effect."

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Yet colonoscopy, which Couric and her foundation call the gold standard of screening, remains controversial. Theodore R. Levin, a gastroenterologist at Kaiser Permanente in Northern California and a national authority on colorectal cancer screening, offers caution about her message. He agrees that Couric's advocacy has been very helpful. But by pushing colonoscopy, the most invasive and expensive screening method, he worries that the public may not learn about safer and more convenient options. One of them is the FIT test, a highly sensitive yet noninvasive test to detect blood in the stool. Patients can perform this test by themselves at home. In studies by the U.S. Preventive Service Task Force that compare FIT testing with colonoscopy, outcomes are similar. Another controversy Couric has caused, probably as the result of her own experience, is her past advice that people in their 40s be routinely screened for colon cancer. That's something Levin and other experts agree makes no sense unless a person has a family history of the disease.

The simplicity of celebrity health messages also creates problems. Celebrity sound bites often don't include pertinent information. Colonoscopy, for example, carries the risks of bleeding, infection, or perforation of the colon. All screening tests can also result in misleading false positive or false negative rates and a whole host of other drawbacks the public really ought to know more about.

Publicity about a disease can also lead to a spike in health care costs without any added benefit. This is exactly what happened in 2005, when pop star Kylie Minogue, then just 37 years old, revealed she had breast cancer. In her native Australia, researchers found mammography rates rose 33 percent in women aged 25 to 34 and 25 percent in those 35 to 44 for six months after Minogue's revelation. The absolute number of breast biopsies increased in both age groups as well. Yet the number of confirmed breast cancers changed little. All that Minogue's publicity did was scare patients and doctors into overscreening. That drove up costs and needlessly exposed women to the radiation of a mammogram.

Barron H. Lerner, a physician and historian at Columbia University (and a Slate contributor), refers to anecdotal advice and advocacy as the "N equals 1 phenomenon" in his 2006 book, When Illness Goes Public. N equals 1 is when "specific cases … assume particular importance, even being seen as definitive examples of given diseases and their prognoses, and how they should be treated." Anecdote becomes scientific proof, which usually puts these assertions in contention with reality.

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The N-equals-1 phenomenon can have a dramatic effect on the public. Take actor Steve McQueen, whom Lerner wrote about in his book. In 1979, McQueen was diagnosed with mesothelioma, a rare, deadly form of lung cancer. Doctors offered McQueen little hope he would survive. So McQueen turned to alternative medicine. He traveled to a clinic in Mexico, where he started an aggressive regimen of nutritional supplements, coffee enemas, massages, shampoos, prayer sessions, psychotherapy, rectal enzyme implants, and injections of a cell preparation made from fetuses of sheep and cattle. Initial reports suggested the treatment worked: McQueen's doctors in Mexico claimed that his tumor had shrunk by 60 percent to 75 percent. McQueen praised his healers effusively. But the truth, revealed after his death in 1980, was that the tumor had only grown over time, extending from his lungs to his diaphragm, down into his intestines and up into his neck. Nevertheless, McQueen's story engaged the public and, most of all, inspired hope in cancer patients. All 152 rooms at his Mexico clinic were booked shortly after his death, and scores more clamored for admittance: all of that demand despite clear evidence that McQueenCare failed.

Even when celebrities playing doctor do make valid points, most of us can't even begin to match the wealth and resources they can bring to their own health battles. In 2003, Dr. Jerome Groopman profiled the actor Christopher Reeve in The New Yorker. Several years earlier, Reeve had fallen off his horse and broken his neck, leaving him paralyzed from the neck down. Just like McQueen, Reeve was determined to find a cure for his injury. His activism in the form of lobbying for stem cell research and other cutting-edge ideas ignited interest in and raised money for spinal cord injuries. And Reeve's remarkable physical progress inspired others. "Every step that he makes … we know how incredible that is. … Seeing the progress he is making, it keeps us going," said one patient.

But Reeve's progress came with a hefty price tag. His annual medical expenses exceeded $500,000 a year. He also received free medical equipment from manufacturers as a result of his celebrity. One company gave him an electrical-stimulation bike, valued at $100,000, for home use. That sort of hope—not to mention free gifts—is unattainable for most of us, and a reminder that at least socioeconomically, we are not at all like the celebrities we admire.

Celebrities should thus exercise caution in their messages about health matters. Perhaps most important, they should be transparent. Take an example pediatricians like me deal with every day: ex-Playboy model Jenny McCarthy, who continues her crusade against vaccines because she believes they caused her son to develop autism. Before she was the face and fury of the anti-vaccine movement, McCarthy described her infant son as a quiet "Buddha baby" who seemed to stare off into space rather than making eye contact and engaging with his mother. That's a classic early red flag for autism, one that was probably overlooked well before her son received many of his vaccines.  

McCarthy discusses her son's ordeal at every turn, but she hasn't disclosed his medical records. If McCarthy is going to blame vaccination for autism despite all the medical and legal evidence to the contrary, she needs to be more up-front with her son's story. Celebrities who go public should also refrain from publicizing preliminary findings and be sure to communicate caveats, like the risks of a screening test in addition to its benefits, regularly.

Regardless, celebrity medical advice isn't going anywhere. We doctors must respect their ability to influence the public. But if those stars work more like Katie Couric, who partners with doctors, and less like Jenny McCarthy or Suzanne Somers, who use their celebrity to undermine them, celebrities are more likely to succeed in crafting both an influential and accurate message.