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The actress Angelina Jolie's decision to undergo a preventive double mastectomy after learning she carried the BRCA1 gene mutation-associated with an increased risk of breast and/or ovarian cancer-apparently sparked an "Angelina effect" on public health.
Jacques Raphael, MD
The actress Angelina Jolie’s decision to undergo a preventive double mastectomy after learning she carried the BRCA1 gene mutation—associated with an increased risk of breast and/or ovarian cancer—apparently sparked an “Angelina effect” on public health.
So say the authors of a study showing a sharp spike in the number of referrals received for genetic testing of women, and also in the number of women found to harbor the BRCA mutation, at one Canada cancer center in the 6 months after Jolie’s May 2013 announcement about her procedure.
The study was conducted at Sunnybrook Odette Cancer Centre in Toronto, with results presented Tuesday at a presscast in advance of the American Society of Clinical Oncology’s 2014 Breast Cancer Symposium taking place September 4-6 in San Francisco.
“While this is a small study, it shows the profound impact that prominent figures like Jolie can have on public awareness of health issues,” said the study’s lead author, Jacques Raphael, MD, a clinical fellow at Sunnybrook. “After Angelina Jolie’s story was released, physicians were probably more proactive and referred more patients; at the same time, patients were more likely to request and seek genetic counseling.”
“It’s a real triumph for what a public disclosure of a health problem can accomplish for patients in society,” added Harold J. Burstein, MD, PhD, associate professor of Medicine at Harvard Medical School, medical oncologist at Dana-Farber Cancer Institute and Brigham & Women’s Hospital in Boston, and moderator of the presscast.
The authors wrote that they conducted the retrospective review because “media coverage has been extensive, but it’s not clear what messages the public and professional medical staff took from this personal story that sometimes could be misleading.”
This is an important issue because “detecting more BRCA1/2 mutation carriers early, before they develop cancer, will help lower the incidence of breast and ovarian cancer diagnoses, with appropriate preventive treatments such as mastectomy and oophorectomy,” Raphael said. “And for women who are already diagnosed with breast cancer and are found to be BRCA positive, preventive treatments can help reduce the risk of developing a second cancer.”
In the study, the investigators gleaned data from the clinical database of the Familial Cancer Program in their tertiary-care cancer center. They gauged the impact of “the Angelina effect” by comparing the number of referrals made 6 months before and 6 months after she shared her story.
The authors also evaluated the quality of referrals by comparing the number of patients referred for genetic testing who actually turned out to be qualified for the process as defined by the Ontario Ministry of Health and Long Term Care. And, they considered how many of those tested, both before and after Jolie went public, were found to carry a BRCA1/2 mutation.
The authors reported that the number of women referred for genetic counseling increased by 90% after the release of Jolie’s story (487 before vs 916 after). This translated to an increase of 105% in the number of women who qualified for genetic testing (213 before vs 437 after).
Of those who sought testing, the number of women with a history of breast and/or ovarian cancer in their families was 121 (25%) before the announcement and 264 (29%) afterward; the number of women with a history of male breast cancer in their families was 16 (3%) before and 38 (4%) afterward; and the number of women who had been diagnosed with breast cancer at the age of 35 years or younger was 15 (3%) before and 28 (3%) afterward.
Notably, the number of BRCA1/2 carriers identified via the process increased by 110% from 29 (or 6%, including 14 BRCA1, 15 BRCA2 carriers) before, and 61 (or 7%, including 33 BRCA1, 28 BRCA2 carriers) afterward.
At a cost of about $300 for a referral and $1000 for a test, the amount spent roughly doubled along with the population in question, going from $146,000 to $275,000 for referrals and from $213,000 to $437,000 for testing, Raphael said.
“This study clearly shows that the number of genetic referrals doubled after [Angelina Jolie’s] story,” the authors wrote. “Nevertheless, the quality of referral remained the same, with nearly the same percentage of patients who qualified for genetic testing and who were identified as BRCA1/2 carriers.”
Now, the authors suggested, “The challenge is to meet the increased demand for cancer genetic services, including screening, counseling, testing, and preventive surgery. After [Angelina Jolie’s] story, the current model of genetic counseling may need to be revisited.”
According to Raphael, it is likely that Jolie’s announcement and related media coverage had a similar effect on increased genetic testing in other countries. However, it is unclear whether the effect will be long lasting. Raphael is conducting a follow-up study to assess referral and genetic testing rates at 1 year before and after the announcement about Jolie’s experience.
Raphael J, Verma S, Hewitt P, Eisen A. The impact of Angelina Jolie’s story on genetic referral and testing at an academic cancer centre. Presented at: Presscast in advance of the American Society of Clinical Oncology’s 2014 Breast Cancer Symposium; September 2, 2014. Abstract 44.