The number of referrals to a large genetic testing center in Canada almost doubled after actress Angelina Jolie's highly publicized announcement in May 2013 that she had a double mastectomy because she carried the BRCA1 gene. Moreover, in this positive result of a “celebrity effect,” the quality of those referrals remained as high after the announcement as they were before.
That was the conclusion of a report at the Breast Cancer Symposium by researchers at Sunnybrook Odette Cancer Center in Toronto (Abstract 44).
Moreover, the number of patients who qualified for testing, and the number found to be carriers, both more than doubled, again attesting to the appropriateness of the referrals.
The symposium is sponsored by the American Society of Breast Disease, the American Society of Breast Surgeons, the American Society of Clinical Oncology, the American Society for Radiation Oncology, the National Consortium of Breast Centers, and the Society of Surgical Oncology.
In a telecast for reporters before the start of the meeting, Jacques Raphael, MD, a clinical fellow in the Medical Oncology Department, who conducted the study along with colleagues at the center's Cancer Genetics and High Risk Program, said the number of referrals to the testing center increased by 90 percent, from 487 to 916, in the six months before and six months after the article that Angelina Jolie wrote about her decision, titled “My Medical Choice,” appeared in the New York Times (5/14/13 issue).
But the number of patients who qualified for testing rose even more, from 213 to 437 in those six-month periods, a 105 percent increase, he said. And the number of those in whom the BRCA1/2 mutation was detected also increased, from 29 to 61—a 100 percent increase.
“Appropriate and high-risk individuals were referred to the clinic, and the referrals were well justified,” he said. “The referrals were affected by the media attention, but not without meeting the criteria defined by the Ontario Ministry of Health.”
The challenge now, Raphael said, 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.”
He said that the researchers are now expanding the study for a period of up to one year before and after Jolie's article to look for any persistent effect.
Minor Changes in Baseline Characteristics
The study showed that the median age of patients referred for genetic testing did not change from one six-month period to the next, and that the percentage of males referred dropped from 10 to eight percent. The percentage of women referred who were already diagnosed with breast cancer rose from 26 to 30 percent.
The number of patients younger than 35 did not change—three percent both before and after—but the number of patients referred who had a family history of breast or ovarian cancer rose from 25 to 29 percent, he reported.
Raphael calculated that the increase in costs in Canada for the referrals was CN$146,000 to CN$275,000, and for testing, the increase was CN$213,000 to CN$437,000.
Harold Burstein: ‘The Right Patients’
The moderator of the teleconference, Harold J. Burstein, MD, PhD, a member of ASCO's Cancer Communications Committee and Associate Professor of Medicine at Harvard Medical School and a breast cancer specialist at Dana-Farber Cancer Institute, said clinicians in the community who see high-risk breast cancer patients have been very aware of what has been dubbed the “Angelina effect.”
“What really stands out in the work in this paper is not just that they've been able to document that the public disclosure by Ms. Jolie prompted more interest in hereditary breast cancer syndromes and genetic testing, but that these were the right people who should be seeking genetic testing,” he said.
And because there were the same percentage of patients asking for genetic testing after the news as before, these were not inappropriate cases of people frightened or alarmed by the messages that came forward. “Rather, they were tested because of their clinicians' or their own awareness,” Burstein said. “It is a real triumph of what a public disclosure of a health problem can accomplish for patients and society.”