2014 Breast Cancer Symposium Highlights on the Impact of Angelina Jolie’s Story on Genetic Testing, with Harold Burstein, MD, PhD

September 5, 2014
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In this podcast, we’ll discuss one study highlighted at the 2014 Breast Cancer Symposium that presents research on the impact that Angelina Jolie’s choice of having surgery to prevent breast cancer had on genetic testing for genes linked to breast cancer risk. 

Transcript: 

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ASCO: You’re listening to a podcast from Cancer.Net (Cancer dot Net). This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors that care for people with cancer.

In today’s podcast, we’ll discuss one study highlighted at the 2014 Breast Cancer Symposium that presents research on the impact that Angelina Jolie’s choice of having surgery to prevent breast cancer had on genetic testing for genes linked to breast cancer risk. This podcast will be led by Dr. Harold Burstein, who is an associate professor of medicine at Harvard Medical School and a medical oncologist at Dana-Farber Cancer Institute and Brigham and Women’s Hospital. Dr. Burstein is also a member of ASCO’s Cancer Communications Committee and Chair of the 2014 Breast Cancer Symposium News Planning Team. ASCO would like to thank Dr. Burstein for summarizing this research.

Dr. Burstein: This is Dr. Harold Burstein from Dana-Farber Cancer Institute and Harvard Medical School in Boston. Today I’m going to be speaking about the recent study on the impact of Angelina Jolie’s choice to have a preventive mastectomy based on results of genetic testing for her hereditary risk of breast cancer.

We live in a culture and a society very much affected by celebrity culture. There is a great interest in the activities of celebrities, and many of them are linked to a variety of philanthropic and other causes that they support. The value of this is unknown in the sense of, does it really affect public awareness, and does it affect philanthropic success? In fact, some recent studies which were summarized in The New York Times had suggested that having celebrities link themselves to various causes does surprisingly little to educate the general public about the importance of the work that those organizations are pursuing.

About two years ago there was a very different kind of disclosure, when Angelina Jolie reported in a New York Times op-ed piece that she had hereditary risk for breast cancer based on a BRCA mutation and that she had elected to undergo bilateral prophylactic mastectomy. Ms. Jolie is one of the most influential and prominent people in Hollywood, a widely known movie star and producer and the regular focus of paparazzi interest. And her announcement really created a sea change in the visibility for hereditary breast cancer conditions. Certainly in the public dialogue, the effect was astonishing. There were literally thousands if not millions of tweets and rebroadcasts and Google links and all sorts of things like that that described her situation. In fact, I wrote a brief editorial at the time to suggest that just like we call amyotrophic lateral sclerosis Lou Gehrig’s disease because of his prominence when he reported his diagnosis, that maybe hereditary breast cancer syndromes would be known as Angelina Jolie syndrome. She really has redefined the landscape.

For those of you who are interested, her opinion piece in The New York Times is really a model of medical writing. She articulated her own natural history, the testing she had undergone, how she framed the discussion for herself and for her family in terms of what her risks were and what her treatment options were. And it was just a beautiful piece that emphasized that this would be a choice that many women might want to pursue and how they would go about thinking about it.

Well, one of the questions has been, what was the real public health consequence of her disclosure? Was there really an effect that’s measurable in terms of how people in the general community would respond to her disclosure?

I can tell you that anecdotally, the people who are interested in cancer genetics have seen a surge in interest following the Angelina Jolie disclosure. They had already taken to calling this the Angelina Jolie effect. Suddenly their clinics were swamped with interest from patients and women all across the country interested in pursuing genetic testing and then making decisions based on those genetic testing results.

But one of the real questions has been, is this tapping into an appropriate level of medical interest, or could somehow this have just trigged a mass overreaction? Could there simply be people who had no particular risk of hereditary breast cancer who were suddenly seeking out medical evaluations when truthfully, they didn’t need it just based on the visibility of the spokesperson who had very prominently reported her own medical condition?

So to study that, investigators at the University of Toronto looked very carefully at their hereditary breast cancer screening population, looking at the number of women who were referred for genetic testing prior to 2013, when Angelina Jolie made her disclosure, and then in the year or two afterwards to see what those patient populations looked like. And that allowed them to ask a couple of very important questions, not just how many women are seeking such screening, but is this appropriate referral? Are these the right kinds of people who should be seeing genetic counselors? Or rather, was it just sort of a mass phenomenon where all of a sudden everyone was flocking into the clinic unnecessarily, perhaps the same way we all makes runs to the grocery store when there is a tornado threat to load up on water when most of us don’t really need that worry? So their findings are presented at the 2014 Breast Cancer Symposium in San Francisco as one of the featured abstracts and discussions at that meeting.

So there were really several interesting findings in this report. The first was that the absolute volume of patients doubled. So they were seeing twice as many women from this region of Ontario, Canada, that they had previously seen in the year before, really a remarkable shift in the numbers of patients referred for genetic counseling. And the second really key observation was that it’s not just that they were seeing more patients, but they were seeing patients who absolutely should have gone for genetic counseling. That is to say, they met the criteria for familial risk or young age of onset of breast cancers in the family; they had the same risk, when all was said and done, of harboring a deleterious BRCA1 or BRCA2 mutation, as the women had in the era prior to Ms. Jolie’s announcement; and that they were making treatment choices in terms of surveillance for prophylaxis in similar fashion as women in the pre-Angelina Jolie announcement, all of which is to say that the availability of Ms. Jolie’s announcement doubled the number of appropriate women referred for genetic testing.

Now, what would be very interesting to know is whether that affected the referring physicians or clinicians or whether it affected the general population or both. That is, did suddenly doctors become more aware of the need to refer patients in for genetic testing because they saw these reports? Or was it simply that the mass media effect, which reaches so many millions of people across North America, led to greater awareness by the women, who then were prompting their clinicians or referring physicians to send them for genetic testing? But either way, it meant that twice as many people were getting access to appropriate genetic testing as had been one previously. And I think that this is a real proof that a celebrity health disclosure can favorably and constructively impact the health outcomes for people around the world and lead to more appropriate engagement with the health care system.

Now, this situation is unique in that Ms. Jolie I think really did a fantastic job in her written statements about conveying who should and who should not necessarily think about this and how they should go about it. So whether this is a generalizable phenomenon remains to be seen. But in this particular case, it’s unquestionable that a Hollywood star has yielded better health care for thousands of women around North America.

ASCO: Thank you, Dr. Burstein. More information from the 2014 Breast Cancer Symposium can be found at www.cancer.net, including additional podcasts covering other highlighted research from this event.  Cancer.Net is supported by the Conquer Cancer Foundation, which is working to create a world free from the fear of cancer by funding breakthrough research, sharing knowledge with physicians and patients worldwide, and supporting initiatives to ensure that all people have access to high-quality cancer care. Thank you for listening to this Cancer.Net Podcast.

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