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Angelina Jolie spoke out on BRCA testing: Did genetic testing increase?


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Angelina Jolie published an editorial in the New York Times in 2013 about her choice to have a double mastectomy after finding out she was positive for a BRCA1 mutation. Researchers from a recent study claim that her celebrity endorsement of BRCA testing may have missed its target audience (previvors), due to the increase in BRCA testing following publication of the editorial but a decrease in the number of mastectomies performed. However, the study failed to take into account that many women without breast cancer do not pursue mastectomy in the months following genetic testing. (1/4/17)

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STUDY AT A GLANCE

This study is about:

Whether rates of genetic testing and mastectomy were affected by Angelina Jolie’s 2013 New York Times editorial on her decision to have a preventative mastectomy because she carried a BRCA mutation.

Why is this study important?

Celebrity endorsements commonly appear on television, in magazines and on the Internet, ranging from skin care products to fad diets. But do these endorsements affect consumer behavior? Not much research is available on this topic. This study compares the time period immediately following Angelina Jolie’s editorial to the period before to see if her editorial resulted in any major changes.

Study findings: 

  1. In the 15 days before Ms. Jolie’s 2013 editorial was published, 0.71 BRCA tests were performed per 100,000 women, compared to 1.13 BRCA tests per 100,000 women in the 15 days after the editorial was published.
    • This increase represents about 4,500 additional BRCA tests at an estimated cost of $13.5 million dollars, assuming the average cost per test was just over $3,000.
  2. About 10% of women who had BRCA testing in the months before the editorial had mastectomies. In the 60 days after the editorial was published, about 7% of women who had BRCA testing also had mastectomies. 
  3. Overall mastectomy rates did not change in the months following Ms. Jolie’s editorial.

What does this mean for me?

The authors of this study wrote in their conclusion, “Celebrity announcements in the social media age can raise awareness and use of preventive care by a large and broad audience, although their ability to target subpopulations of interest may be limited.”

The authors concluded that increased BRCA testing and decreased overall mastectomy rates during this time meant that the additional women who were tested did not carry as many BRCA mutations because they did not get mastectomies. The researchers believe that instead of targeting people who were positive for a BRCA mutation, the editorial in fact targeted those who were not as likely to carry a BRCA mutation.

While the authors’ conclusions were based on one interpretation the data, it is not necessarily accurate. This study was flawed (details are discussed in the Limitations section (below). Most notably, the authors’ conclusion that Jolie’s editorial did not reach the target population (women with a family history of breast, ovarian, fallopian tube, or peritoneal cancer) was based on insurance data. However, to have BRCA testing ordered and covered through insurance in 2013, patients most likely had to have a family history of breast/ovarian cancer, Ashkenazi Jewish ancestry, and/or a personal history of these cancers at a young age.

Patients who are concerned about a genetic cause of breast cancer should talk to a genetics professional, such as a genetic counselor or medical geneticist. These health care providers will assess the patient’s personal and family history of cancer and determine if genetic testing is right for them.

Questions to ask your health care provider:

  • Should I consider genetic testing?
  • What are the pros and cons of genetic testing?
  • What is my breast cancer risk?
  • Will insurance cover the cost of my genetic testing?
  • I have a family history of breast cancer, but my genetic testing came back negative. What does this mean?

IN DEPTH REVIEW OF RESEARCH

Study background:

Angelina Jolie wrote an editorial in the New York Times in 2013 to increase awareness of BRCA testing and explain her life choices following her positive BRCA test result. Drs. Sunita Desai and Anupam Jena from Harvard Medical School’s Department of Health Care Policy published research in the British Medical Journal examining changes in BRCA testing and mastectomy rates that may have resulted from the publication of Ms. Jolie’s editorial.

Researchers of this study wanted to know:

Do celebrity endorsements result in population level change in health-related behavior?

Population(s) looked at in the study:

This study looked at information from 9,532,836 women who had claims in the Truven MarketScan commercial claims database, which includes health insurance claims for over 50 million patients.

Study findings:

  1. In the 15 days before Ms. Jolie’s 2013 editorial was published, .71 BRCA tests were performed per 100,000 women, compared to 1.13 BRCA tests per 100,000 women in the 15 days after the editorial was published.
    • This increase represents about 4,500 additional BRCA tests costing $13.5 million dollars, assuming the average cost per test was just over $3,000.
    • This increase did not occur during the same time period in 2012.
  2. About 10% of women who had BRCA testing in the months before the editorial had mastectomies. In the 60 days after the editorial was published, about 7% of women who had BRCA testing got mastectomies.  A “similar pattern” was found 90 and 180 days after testing.
  3. Overall mastectomy rates for all women (tested or not tested) did not change in the months following Ms. Jolie’s editorial.

Limitations:

The authors acknowledge in their limitations section that they “did not measure benefits associated with knowing one’s BRCA status such as peace of mind or increased vigilance after learning one’s risk factors.” Additionally, they were unable to identify from their data which mastectomies were preventative. Their study population also excluded some people, such as Medicare enrollees.

The authors used the post-testing mastectomy rate as an indirect way to measure the number of women who tested positive for BRCA mutations. They claim that the increased number of women who were tested after the editorial was published had a lower probability of having a BRCA mutation than women who tested before the editorial. Using mastectomy as a measure of positive BRCA mutation test results presents several problems.  It assumes that mastectomy follows a positive test result, but we know that not all women who test positive for a mutation choose risk-reducing mastectomy.

First, although national guidelines state women with BRCA mutations may “consider” mastectomy, it is not a hard and fast recommendation. Many women instead choose to undergo increased screening or take risk-reducing medication to manage their increased risk of breast cancer. Many women with breast cancer who meet guidelines for genetic testing may use BRCA testing to help them decide between treating their cancer with lumpectomy or mastectomy. In these cases, mastectomy would occur within a few months of testing. But the study authors argue that women went to their doctors to request testing as result of reading the editorial; these women were presumably previvors (without cancer), who had more time to consider whether or not they wanted to pursue risk-reducing mastectomies. Even those who decide to manage breast cancer risk by having a risk-reducing mastectomy will not necessarily have the surgery within the timeframes used in this study. Recovery from mastectomy, particularly when paired with reconstruction, requires several weeks of rest. Women without cancer are not pressed to schedule mastectomy for treatment; they can delay scheduling their surgery until it syncs with their work and/or family schedule. 

Second, national guidelines recommend that women who test positive for a BRCA mutation have their ovaries and fallopian tubes removed. In many cases, women with BRCA mutation choose to have their ovaries and fallopian tubes removed before having mastectomy. In 2013, the recommendation was to have this risk-reducing surgery around ages 35-40 and after the completion of childbearing. Women who tested after age 40 might have felt more compelled to have their ovaries removed first. Indeed, over half of the women who underwent BRCA testing in this time period were over age 45. Even those under age 40 may have chosen to have their ovaries and fallopian tubes removed before pursuing mastectomy, because the surgery has a shorter recovery time and requires less time off work. Removal of the ovaries also decreases breast cancer risk, and can be used in conjunction with increased screening to manage breast cancer risk.

The study authors also wrote that mastectomy rates may have increased after the time captured by their study period. This is something that should not be overlooked and should be studied if researchers want to make the claim that mastectomy rates decreased in a specific time period—mastectomy is a big decision and major surgery, and not all women can immediately make the decision and drop everything in a month after finding a positive BRCA mutation to get a mastectomy done.  This is particularly true for women who do not have breast cancer and elect to have a mastectomy for prevention, and not as part of cancer treatment, which is precisely the group “targeted” by the Jolie editorial.

Ultimately, the researchers in this study did not have direct data to back their claim that the women who had genetic testing after Jolie’s editorial were not those at risk of having a mutation, because the researchers do not know the exact number of people who tested positive for BRCA, their personal or family histories of cancer, or if there was an increase in other medical services such as breast MRI, surgical removal of ovaries and fallopian tubes, or prescriptions for risk-reducing medications that would follow a positive BRCA test result.

Finally, the authors did not put their research in the context of the current (2016) genetic testing landscape. Testing is offered by more labs and becomes increasingly cheaper as time goes on. Genetics professionals no longer only test for BRCA mutations, as research has identified many new breast/ovarian cancer risk-increasing genes such as PALB2, ATM, CDH1, PTEN and more, which are easily tested for on gene panels.

Conclusions:

The authors in this study found that BRCA testing increased in the 15 days following Angelina Jolie’s New York Times article, but this increase was not correlated with an increase in mastectomy rates in the 60 days following the publication. Based on this premise, the authors concluded that celebrity endorsements reach a broad audience that may not be the targeted population. More definitive data is needed to prove this claim. Regardless of the results of this study, patients with a personal or family history of ovarian cancer or breast cancer before age 50 should not hesitate to see a genetics professional to determine if they should consider genetic testing.

Assessing media coverage of this study is difficult because while many media articles accurately reported on the researchers claims, few dug into the paper or talked to outside experts who could have commented on the many limitations of the methodology. In the end, this study shows that the number of BRCA tests in the United States increased in the 15 days following Ms. Jolie’s editorial. However, the conclusions about whether or not these women had a mutation based on whether or not they had a mastectomy are but one interpretation of the data and should have been called out by the media.

Posted 1/4/17

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References

Desai S and Jena AB. “Do celebrity endorsements matter? Observational study of BRCA gene testing and mastectomy rates after Angelina Jolie’s New York Times editorial.British Medical Journal. Published online first on December 14, 2016.  

Jolie A. “My Medical Choice.” New York Times. Published online on May 13, 2013. 

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