It's not as big a plot twist as the Jolie-Pitt divorce announcement, but it was a surprise this week: An analysis of more than 9 million insurance records found that though Angelina Jolie's famous 2013 revelation of her preventive surgeries apparently prompted thousands more women to get tested for cancer-related BRCA genes, there was no similar spike in preventive mastectomies.
What to make of this? Jolie wrote that she hoped other women could benefit from her experience. Didn't they?
I spoke with Dr. Michele Berman, co-author of the new book, "Reimagining Women's Cancers: The Celebrity Diagnosis Guide To Personalized Treatment and Prevention." She and her husband, Dr. Mark Boguski, run CelebrityDiagnosis.com, a website that mines celebrity diseases for "teachable moments in medicine." (Personally, I enjoy feeling virtuous and edified even as I devour the celeb brain candy, but I also trust the carefully considered takeaways of the Boston-based, Harvard-and-Hopkins-trained couple.)
Our conversation, lightly edited:
So what do you make of this new "Angelina effect" paper?
MB: It’s not very surprising to me at all. I would expect, and I know that there were, a lot of women who went out and had testing for the breast cancer genes after Angelina Jolie made her announcement. We see that time and time again with celebrities — when they have a disease, people just go and look it up. They want more information about it; that's why we exist.
But the fact that they did not find an increase in mastectomies is not that surprising, because what you're dealing with is really a rare disease. Out of all the women who get breast cancer, only 5 to 10 percent of them have the gene and will be at increased risk for breast cancer.
So it seems like what happened is that everybody heard about Jolie, and then a lot of women got tested, but most were not at high risk, actually?
Right, they probably weren't at high risk. They just said, "Oh, Angelina Jolie had this gene and she had to have her breasts removed because she's going to get cancer. So could I have that too? Let me go get tested."
But shouldn't there have been a gatekeeper in the doctor's office who said, "You really don't have a family history, you don't need this genetic test"?
You would think so, but sometimes people are persistent; sometimes they don’t have the time; sometimes, some women probably should have been tested — there may have been a relative somewhere who had breast cancer and so they're concerned. And it’s probably easier for the physicians to say, "OK let's get you tested."
So do you see this as a positive story or a cautionary tale?
It’s sort of a double-edged sword. It’s always good when people get more information about a particular disease, and about cancer specifically. If they learn more about ways to get tested, ways to improve their potential for preventing disease or being treated early, all of that is good.
But you also have to have people who explain that this is not for everyone. There are recommendations that look at where you get the best benefits out of a particular screening test, or mammogram, or blood work, based on what happens in large populations. But they're not specific to any one individual.
But when celebrities reveal their diagnoses, the news goes to the general population, so isn't there a pitfall here?
There is, but there's also an opportunity, to use it as a teachable moment, to get physicians who are knowledgeable in that field to say: Yes, this is what’s appropriate for Angelina, but this is a rare disease. Go back and find out your family history, go back and ask your mom and grandmother, find out what your family history is for cancer, and perhaps go to see a certified genetic counselor, have your risk evaluated. And then, if it's appropriate to you, have the test done.
So what we have in this study is thousands more women getting tested but no rise in mastectomies. So that would suggest there was not more detection, or that they were detected but decided to wait, right?
There's not a lot of detail. This study is just a starting point.
Would you compare this Angelina effect to other celebrity cases in which the dissemination of diagnosis might be a cause for concern?
There are always celebrities who tout their alternative treatments as potentially first-line treatments for cancer, not so much as a complement to their traditional cancer treatment. One example would be Suzanne Somers, who has touted her use of alternative treatments as treatment for her breast cancer.
Also, Ben Stiller recently came out with his story about being diagnosed with prostate cancer at a relatively young age after having a PSA test done. But routine testing is no longer recommended because, for the great majority of men, it leads to over-diagnosis and over-treatment. Prostate cancer is one of those diseases where you’re more likely to die from something else, and "watchful waiting" is a perfectly reasonable approach. In fact, some doctors no longer believe that early-stage prostate cancers or breast cancers should be called “cancer” at all.
And how about the flip side? What are the best stories of celebrities going public that have done good?
The prime example is Katie Couric, when she had her live colonoscopy. Colonoscopies went up 20 percent after she did that. And because colon cancer is a relatively frequent occurrence in terms of cancers, I'm sure there were many people who went and got a colonoscopy, found something and were treated early because of that.
Another one is Michael Douglas coming out and talking about his oral cancer, cancer of the tongue, being related to HPV or Human Papilloma Virus infection. That's something people can be educated on, and there are vaccines now for children and young adolescents that can prevent that.
John Wayne was a prime example of someone who had lung cancer who actually did a public service announcements saying, "Don’t smoke. If you smoke, stop. If you haven't started, don't start. Smoking caused my lung cancer." At a time when people didn't do that.
Is there any celebrity case you wish had gotten more attention?
In the U.K. was a woman named Jade Goody, who died of cervical cancer. She was a reality star. Her story hasn't really been heard much in the U.S., but they followed her very closely in the British press through her whole cancer battle, which she eventually lost at a fairly young age. But the rate of pap smears and cervical screening jumped dramatically.
In your books, you write about the 'Goody-Gaga' effect.
The 'Gaga' part of that was that Mark and I were at a conference about media and social networking and search engines, and there was a guy from a company that analyzes Google traffic patterns. He put up the top list of searches during a particular month, and one of the highest ones was lupus. And he said, "I have no idea why lupus was so high then." And I looked back at our website on my phone, and noticed that this was when Lady Gaga had made an announcement that she had borderline lupus. So we raised our hands and said, "We know exactly why lupus was so high that month."
So ultimately, the moral of this Angelina effect story is...?
Celebrity stories are really double-edged swords. They can be very helpful. They can be very educational. But if the information given is just put out there on its own, without appropriate commentary by people who know what they're talking about, people can get wrong ideas. They can go looking for cures where there may not be any; they can go looking for testing where they may not need it.
It's obvious these celebrities are not doing this to cause anyone harm. Their intentions are very good. But their story just doesn't always necessary translate to other people's stories. The message got out; people learned some more, which is a good thing. But the message didn't necessarily target the people who were most at risk.