In the weeks following Julia Louis-Dreyfus' heartfelt (and devastating) announcement on Twitter that she has breast cancer, I have been anxiously awaiting an update on the type of treatment she is pursuing. What has me so curious? Well, I feel connected to Julia, you see. Oh no, we've never met, but I feel like I know her, like I can trust her. It's likely that if she advocated a certain treatment or procedure, I'd pocket the reference just in case, much like I would if it came from a friend, perhaps valuing it even more because, you know, she's Julia.
It’s a bit hyperbolic, sure, but you get the point: Celebrities can hold a great deal of influence on our lives —not just over where we shop (Julia wears Old Navy in commercials!) or what hair products we buy (Julia endorses Clairol!), but potentially how we understand and potentially treat medical conditions. A new study considered the celebrity effect on medical choices by examining one specific example: Angelina Jolie’s public choice to undergo a preventive double mastectomy (medically dubbed a bilateral prophylactic mastectomy) after learning she had a genetic predisposition for developing breast cancer. Did more women elect to have this procedure after Jolie shed light on it in 2013? The answer, the study concludes, is inarguably yes.
Looking at two regions, New South Wales in Australia and New York, the researchers found the rate of risk-reducing mastectomies spiked after Jolie's announcement that she’d undergone the procedure.
“There was about a 50 percent increase of RRMs [in these regions] between 2013 and 2014,” says Dr. Art Sedrakyan, co-author of the paper and a professor of healthcare policy and research and cardiothoracic surgery at Weill Cornell Medical College.
Not only did RRMs go up as part of what researchers dub “the Jolie effect,” but so too did the number of women getting the genetic testing that Jolie underwent to find out she carried the faulty gene. A 2016 study by BMJ found that BRCA test rates increased in the 15 days following publication of Jolie’s moving op-ed in the New York Times — jumping from 0.71 BRCA tests performed per 100,000 women to 1.13 tests per 100,000.
The Problem is the Facts Fall Through The Cracks
To learn more about this apparent impact Jolie’s revelation had on women, I spoke with a couple of breast cancer specialists including Dr. Michael S. Sabel, chief of surgical oncology and a breast cancer surgeon at the University of Michigan Comprehensive Cancer Center. Last year, he co-authored a similar study that noted a sharp increase of RRMs, specifically double or bilateral mastectomies in recent years, and considered how media coverage of celebrities’ opting for the procedure might have played a role.
“When a celebrity talks about having a bilateral mastectomy, it’s an emotional story and coverage tends to be biased towards the ideas that a bilateral mastectomy is the right choice for everyone,” says Sabel. “This bias could be the reason behind the rise of popularity.”
A2016 study by BMJ found that BRCA test rates increased in the 15 days following publication of Jolie’s moving op-ed in the New York Times.
Often a bilateral mastectomy is the right choice, but there is cause for concern that as this intensive medical procedure is increasingly thrust into the spotlight, misinformation is spreading. One frequent misunderstanding: that a preventive double mastectomy guarantees you will not get breast cancer.
“It can reduce the risk by 95 percent, but when you do a mastectomy it is impossible to remove every last cell,” says Dr. Sabel. “A small amount of tissue needs to be left under the skin to provide blood supply to the skin. So, the chances are very low but not zero. [Separately,] if you had cancer, the cancer is still potentially in the body, and the cancer can still return to another part of your body.”
Both Dr. Sabel and Dr. Dennis Holmes, a breast cancer surgeon, researcher and interim director of the Margie Petersen Breast Center at John Wayne Cancer Institute at Providence Saint John’s Health Center suggest that Angelina Jolie actually did a great deal of good by sharing.
“Jolie brought much needed attention to the importance of genetic testing for assessment of the risk of hereditary breast cancer,” says Dr. Holmes, noting that positive test results can “empower BRCA-mutations carriers to take control of their own health destiny by allowing them opt for preventive surgery or increased surveillance.”
But, as Dr. Holmes underscores, it must be realized that Jolie had “a very specific medical diagnosis — a hereditary gene mutation that causes breast cancer — that does not affect the majority of the population, or even the majority of women with breast cancer. Mastectomy offers no survival advantage over lumpectomy and radiation, and some studies even show reduced survivor with mastectomy. Preventative removal of the opposite breast in non-mutation carriers also offers no survival benefit.”
Celebrities Usually Mean Well, But Listen With Caution
Celebrities usually mean well when they advocate for a treatment or procedure. Don’t we all when we’re talking about something that helped us that could help others? But they can do more accidental harm than intentional good.
Jolie had a very specific medical diagnosis — a hereditary gene mutation that causes breast cancer — that does not affect the majority of the population.
Dr. Sabel mentions Suzanne Somers, who publicly battled breast cancer in the early 2000s.
“She talked about some of her decision-making around radiation therapy and spoke negatively about it, quoting inaccurate numbers about Tamoxifen. She overestimated the risk of stroke and said you could get the same [benefits] from taking natural alternatives.”
Another example of good advice gone wrong, in Sabel’s estimation: Wanda Sykes.
“She chose to have bilateral mastectomies then said on The Ellen DeGeneres Show that she would have [zero chance of having] breast cancer as a result,” says Sabel. “This is not accurate information.”
And then there’s the queen of expensive holistic and oft-medically challenged wisdom: Gwyneth Paltrow who pushes an ever-expanding array of unconventional health treatments under her wellness brand Goop.
“I think that she’s potentially doing harm,” asserts Sabel. “I just wish celebrities could accept they have a significant influence on patients.”
The Social Science Behind How Celebs Influence Our Behavior
But why do these celebrities have such influence in the first place?
Dr. Frank Niles, a social scientist, explains that it has to do with our steady exposure to these living icons and to the halo effect.
I just wish celebrities could accept they have a significant influence on patients.
“When we get exposed to folks through the media we start developing a familiarity almost like they're part of our family,” says Dr. Niles. “We develop positive or negative emotional connections with the individual. When we develop positive associations, anything those celebrities endorse or talk about benefits from the halo effect, meaning when we have positive emotional resonances with that individual, we have similarly positive responses to most anything they do.”
In and of itself, this isn’t unhealthy; in fact, it’s normal: it’s just how our brains work. But it’s important to keep it in check if only because it encourages us to realize that celebrities are not perfect people, and thus, they do not have perfect information.
If you’re considering a medical procedure, do your homework and of course, talk to your doctor.
Celebrities are not perfect people, and thus, they do not have perfect information.
“I recommend patients come in with a list of questions and an open mind, and that they do seek second opinions,” says Dr. Sabel. “While I’ve never had a patient come and say, ‘A celebrity had it so I want it,’ I have had a lot of women who come in with breast cancer stating that they want a bilateral mastectomy and I need to slow them down and let them know why it may or may not hold the benefits they think it does. It's not that the decision is right or wrong — it’s that it's made with the right information and the right goals in my mind.”