Celebrity is a powerful force in public opinion, and it often has been pursued by medical experts eager to tap its do-good potential. But a pair of recent star turns on preventive testing have caused consternation over their unintended and unwelcome outcomes. Have Angelina Jolie and Ben Stiller led their fans astray, prompting some to misunderstand the best, most current, evidence-based thinking on cancer care and others even to undergo unnecessary, invasive, and costly screenings?
New research, published in the peer-reviewed and well-respected British Medical Journal (aka the bmj), examined the aftermath of Jolie’s disclosure, in a New York Times Op-Ed three years ago, that she had been tested and found to carry the BRCA gene mutation that predisposes some women to breast and ovarian cancer.
She urged women to be screened for BRCA and told how, prophylactically, she had decided to undergo a double mastectomy and reconstructive surgery. She said she did not make this decision lightly and did so only based on her mother’s early cancer death and after Jolie received extensive medical counsel. To Jolie’s credit, her Op-Ed was thoughtful, careful, and nuanced. It was more disclosure than advocacy by one of the globe’s mega-stars, partly explaining her prolonged absence from the spotlight’s glare. Although the piece said the BRCA mutation is not common and the decisions can be complex about surgery and other means to deal with its potential effects, did that message get through?
The researchers, examining insurance data on 10 million women and analyzing it to eliminate other factors, found that thousands of women in 2013, after Jolie’s disclosure, had undergone BRCA screening, though mastectomy rates at the time did not significantly increase but declined. In sum, the researchers estimated that 4,500 BRCA tests had been performed at a cost of $13.5 million. The “wrong” women, those who did not need the screening, had undergone the $3,000 test unnecessarily, also potentially subjecting them to further medical testing and procedures with their own possible harms.
“Celebrity announcements in the social media age can raise awareness and use of preventive care by a large and broad audience, although their ability to target subpopulations of interest may be limited,” the researchers concluded.
That’s a message that some in health care may have wished that Ben Stiller had taken into account. The comedic actor has gotten serious attention, and measured criticism, for his recent Opinion piece on the online site Medium about his physician’s insistence that he take the prostate specific antigen (PSA) screening for prostate cancer. He criticizes new, expert guidelines that urge men to rely less on the test, saying flatly:
Taking the PSA test saved my life. Literally. That’s why I am writing this now. There has been a lot of controversy over the test in the last few years. Articles and op-eds on whether it is safe, studies that seem to be interpreted in many different ways, and debates about whether men should take it all. I am not offering a scientific point of view here, just a personal one, based on my experience. The bottom line for me: I was lucky enough to have a doctor who gave me what they call a “baseline” PSA test when I was about 46. I have no history of prostate cancer in my family and I am not in the high-risk group, being neither — to the best of my knowledge — of African or Scandinavian ancestry. I had no symptoms. What I had — and I’m healthy today because of it — was a thoughtful internist who felt like I was around the age to start checking my PSA level, and discussed it with me.
Although saying that Stiller hit on a key aspect of prostate cancer prevention—patients’ careful, thoughtful discussions with their physicians about appropriate steps—Kevin Lomangino, managing editor of healthnewsreview.org, a health news watchdog site, fires back at the celebrity view. He writes:
My problem with Stiller’s piece is that it makes a number of false or misleading assertions and fails to accurately reflect the evidence on prostate cancer screening. And because Stiller is smart, persuasive, and famous, his skewed piece may do a great deal of harm to men who may be led astray by his faulty reasoning.
Stiller, he says, based on interviews with experts, exaggerates badly when he states with such conviction that the test saved his life. He ignores the considerable science that has created an evidence-based consensus, including by a blue-chip, national health advisory panel, to shift away from annual PSA testing for all men after a certain age. Experts say such aggressive screening is unnecessary, costly, and subjects too many patients to expensive, invasive, painful, and unneeded further medical tests and procedures because of excess “false positive” results.
Getting Americans to reduce over-testing and pushing doctors to unhook themselves from such “defensive” medicine practices has been a prime focus of health policy experts. They say that campaigns to reduce less effective and even harmful screenings and procedures could cut billions of dollars in costs from the U.S. health system. Mammograms and PSA testing have been two targets of such efforts—which may be why Stiller’s commentary, and to some degree Jolie’s, have attracted experts’ attention.
Tim Caufield, a Canadian health policy professor and debunker of celebrity health claims (notably those by Gwynneth Paltrow) and other researchers have examined the “Jolie effect.” A research paper by experts in the Maryland area, said her star power had raised public awareness about BRCA and women’s cancer. But Caufield’s study, published in the peer-reviewed and respected Genetics in Medicine journal, takes issue with the positive media spin given to Jolie’s disclosure, especially given that her situation is uncommon.
I’ve written about the complexities of BRCA and deciding next steps for women and men in its care. I’ve discussed how celebrities, particularly their deaths due to certain causes, can helpfully increase public awareness about preventing or treating certain conditions. I also agree with Caufield’s caution that medical experts may wish to tap star power for broad, direct, and uncomplicated public messaging about health issues. Celebrities are less successful in targeted communication of complex medical-scientific concerns, he says.