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Angelina Jolie’s 2013 editorial prompted spike in BRCA testing
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Angelina Jolie’s 2013 editorial in The New York Times that urged women to consider BRCA testing following her own preventive double mastectomy resulted in a 64% increase in genetic tests for predisposition to breast cancer, according to an observational study published in The BMJ.
In her editorial, Jolie wrote that women should know they have options. “I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices,” she wrote.
The additional 4,500 BRCA tests in the 15 business days following the publication of Jolie’s editorial amounted to about $13.5 million in additional health care expenditures. However, the rates of American women undergoing mastectomies during that time remained unchanged.
“Overall, our analyses suggest that celebrity endorsements can be very effective in raising awareness about health conditions and preventive services,” Sunita Desai, PhD, a Marshall J. Seidman fellow in health care policy and economics at Harvard University, told HemOnc Today. “However, they cannot effectively target subpopulations most at risk for the underlying condition.”
In her editorial, Jolie revealed she tested positive for the “faulty” gene BRCA1 and was told she had an 87% risk for breast cancer and a 50% chance for ovarian cancer. Jolie’s mother died of ovarian cancer at the age of 56 years. Her grandmother and great-grandmother also died of the same disease. Jolie, now 41, estimated that her chances of developing breast cancer were reduced to 5% after her preventive double mastectomy.
Jolie also noted that “only a fraction of breast cancers result from an inherited gene mutation,” but encouraged women to undergo gene testing, writing, “It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options.”
Desai and Anupam B. Jena, MD, PhD, the Ruth L. Newhouse associate professor of health care policy at Harvard Medical School and physician in the department of medicine at Massachusetts General Hospital, gathered information from 9.5 million women aged 18 to 64 years with claims in the Truven Market Scan commercial claims database. They measured changes in BRCA testing rates in the 15 business days immediately before and after Jolie’s editorial, which was published on May 14, 2013.
Daily BRCA test rates increased from 0.71 tests per 100,000 women in the 15 business days before the publication to 1.13 tests per 100,000 women in the 15 days after publication, a rise of 64%.
In comparison, testing rates in that same 30-day period the previous year were unchanged, from 0.58 per 100,000 women in the 15 days leading up to May 14, 2012, to 0.55 per 100,000 women in the 15 days after May 14, 2012.
Of the women who underwent BRCA testing, 36% (n = 11,751) were aged 46 to 55 years, 29% (n = 9,506) were aged 36 to 45 years, 22% (7,164) were aged 56 to 64 years, 11% (3,674) were aged 26 to 35 years, and 3% (n = 850) were aged 18 to 25 years.
Desai and colleagues estimate Jolie’s editorial prompted an increase of 4,500 BRCA tests, resulting in an estimated $13.5 million in medical expenditures ($3,000 per BRCA test).
Researchers included 90- and 180-day follow-up periods to allow sufficient time for women testing positive for BRCA to undergo mastectomy.
Overall, mastectomy rates remained unchanged in the months after Jolie’s editorial. Sixty-day mastectomy rates among women who had BRCA tests decreased from 10% in the months before the editorial to 7% in the months following publication.
Researchers noted those mastectomy rate changes suggest that additional BRCA testing induced by Jolie’s editorial probably did not identify new BRCA mutations requiring preventive mastectomy.
“While the women undergoing BRCA testing may benefit from knowing their status, our analysis suggests that the incremental tests done due to Jolie’s editorial did not lead to increased rate of positive BRCA mutation diagnoses,” Desai said. “That suggests there was some over-testing that resulted.”
Researchers acknowledged that preventive mastectomies among women who tested positive for the BRCA mutation may have increased after Jolie’s editorial although overall mastectomy rates remained steady. Further, mastectomy rates could have increased after the time captured in the study period.
“There are guidelines around who is appropriate for the BRCA testing,” Desai said, noting the genetic testing fact sheet issued by the NCI. “For example, women with a family history of breast/ovarian cancer and women of certain ethnicities are more appropriate for the testing.” – by Chuck Gormley
For more information:
Sunita Desai, PhD, can be reached at department of health care policy, Harvard Medical School, 180 Longwood Ave., Boston, MA 02115.
For additional reading :
NCI. BRCA1 and BRCA2: Cancer Risk and Genetic Testing. Available at: www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q6. Accessed on Dec. 28, 2016.
Disclosure: The researchers report no relevant financial disclosures. The study was supported by a grant from the Office of the Director, NIH and the Marshall J. Seidman fellowship at Harvard Medical School.
Perspective
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D. Gareth Evans
Tony Howell
Desai and Jena pose the question, “Do celebrity endorsements matter?” They have taken Angelina Jolie’s announcement in The New York Times on May 14, 2013 that she had bilateral preventive mastectomies in view of the fact that she was found to have a mutation in the BRCA1 gene. Jolie didn’t endorse anything. She let it be known that she had a gene test and an operation. The researchers state that Jolie’s editorial — titled “My Medical Choice” — “urged women to consider BRCA1/2 genetic testing.” This is somewhat different to the actual statement that Jolie wrote in her editorial: “For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices.”
We have no indication whether the tests before or after the announcement in the American private health care system were performed for appropriate reasons and what the results of the tests were. The increase in testing occurred the day after the publication of the editorial and remained at the same level for the subsequent 14 days. That a woman can, within 24 hours, access a BRCA1/2 test in the United States potentially without any prior risk assessment or counselling is of interest.
Desai and Jena indicate that in women who had BRCA tests, 60-day monthly mastectomy rates decreased from on average 10% from January to April 2013 (ie, before the Jolie announcement) to 7% during May to December 2013 after the announcement, “suggesting that incremental BRCA tests obtained as a result of the Jolie editorial did not yield additional BRCA–positive mutations that might warrant preventive mastectomy.” This is far too short a time to expect women to have counseling and to proceed to surgery, quite apart from the fact that Desai and Jena had no idea what type of mastectomies were being performed and for what indication.
Angelina Jolie’s announcement proved to be helpful to women in other health systems — and possibly in the United States if appropriate data were collected. In the U.K., Australia, Canada and Austria, there was an increase in appropriate referrals and appropriate treatment for women facing the extraordinarily difficult path of what to do about the high risk for breast and ovarian cancers. In these health systems, Jolie’s announcement helped women already at high risk to take appropriate action, and she should be lauded for her courage rather than dismissed as providing yet another “celebrity endorsement.”
References:
Evans DG, et al. Breast Cancer Res. 2015;doi:10.1186/s13058-015-0650-8.
Evans DG, et al. Breast Cancer Res. 2014;doi:10.1186/s13058-014-0442-6.
James PA, et al. Med J Aust. 2013;199:646.
Kosenko KA, et al. J Health Commun. 2016;doi:10.1080/10810730.2015.
Lebo PB, et al. Cancer. 2015;doi:10.1002/cncr.29461.
Nisker J. J Obstet Gynaecol Can. 2013;35:689-691.
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