This article is more than 5 years old. Information may no longer be current.
Angelina Jolie’s preventive mastectomy doubled one center’s referrals for genetic testing
Click Here to Manage Email Alerts
The number of genetic testing referrals nearly doubled at one center after Angelina Jolie publicly announced her decision to undergo preventive double mastectomy, according to results of a retrospective study presented at the Breast Cancer Symposium.
Although the proportions of referred women who subsequently qualified for genetic testing and were found to harbor BRCA1/2 mutations remained consistent, centers may face challenges as they try to meet the increasing demand for genetic services, researchers wrote.
“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,” Jacques Raphael, MD, clinical fellow at Sunnybrook Odette Cancer Center in Toronto, said in a press release. “[Although] this is a small study, it shows the profound impact that prominent figures like Jolie can have on public awareness of health issues.”
Raphael and colleagues evaluated Sunnybrook Odette Cancer Center’s clinical database to compare the number of referrals 6 months before and 6 months after Jolie’s May 2013 public announcement that she had undergone a double mastectomy after genetic testing indicated she harbored a BRCA1 mutation.
Researchers found the number of women referred increased by 90%, from 483 women in the period immediately prior to Jolie’s announcement to 916 women during the period immediately following her announcement.
The increased referrals corresponded with a 105% increase in the number of women who qualified for genetic testing (213 vs. 437). These included higher numbers of women with a family history of breast and ovarian cancers (121 vs. 264), those with a family history of male breast cancer (16 vs. 38), and those who were diagnosed with breast cancer when aged younger than 35 years (15 vs. 28).
The number of women identified as BRCA1/2 carriers increased by 110%, from 29 in the 6-month period prior to Jolie’s announcement to 61 in the 6-month period after her announcement. The number of confirmed BRCA1 carriers increased from 14 to 33, and the number of BRCA2 carriers increased from 15 to 28.
Although the increase in referrals led to increased detection of BRCA1/2 mutation carriers, the proportion of referred patients who qualified for testing (44% vs. 47.7%) — as well as the percentage of those found to harbor BRCA1/2 mutations (25% vs. 28.8%) — were comparable before and after Jolie’s announcement.
Researchers found the center’s costs for genetic referrals increased from $146,000 to $275,000, and the costs for genetic testing increased from $213,000 to $437,000.
“This abstract clearly shows that the number of genetic referrals doubled up to 6 months after Angelina Jolie’s story,” Raphael said during a press conference. “At the same time, the quality of referrals remained the same, meaning appropriate and high-risk individuals were referred to the clinic. The referrals made were well-justified and were not only affected by the media without meeting the criteria defined by the Ontario Ministry of Health. If this is a true ‘Angelina effect,’ we expect to have a challenge to meet the increased demand for cancer genetic services, mainly time-wise and cost-wise.”
An additional analysis is underway to extend the comparison to 1 year before and 1 year after Jolie’s announcement, Raphael said.
For more information:
Raphael J. Abstract #44. Scheduled for presentation at: Breast Cancer Symposium; Sept. 4-6, 2014; San Francisco.
Disclosure: The study was funded by Sunnybrook Odette Cancer Center. One researcher reports consultant/advisory roles with, speakers’ bureau roles with, and honoraria or research funding from Amgen, AstraZeneca, Boehringer Ingelheim, Eisai, Lilly, Novartis, Pfizer, Roche/Genentech and Sanofi-Aventis.
Perspective
Back to Top
Harold J. Burstein, MD, PhD
This is a very exciting abstract for many reasons. Perhaps foremost concerns what people in the community who see high-risk breast cancer patients have been very aware of — what they have dubbed the “Angelina Jolie effect,” or this phenomenon of more women and their families seeking out genetic testing. What really stands out about the work in this paper is not just that that they were able to document that the public disclosure by Jolie prompted more interest in hereditary breast cancer syndrome genetic testing, but really that this was the right people who should be seeking out genetic testing. The key point is that the same percentage of patients who are coming in for genetic testing beforehand as after actually had genetic mutations, and the same percentage of people before the announcement as after met the criteria for testing. It’s not that these were inappropriate people who had been frightened or alarmed by the messages and then came forward. Rather, either because of their clinicians or because of their own awareness, these were perfectly appropriate individuals who are now seeking that genetic counseling in the wake of Jolie’s diagnosis. It is a real triumph for what a public disclosure of a health problem can accomplish for patients in society.
Click Here to Manage Email Alerts