Star Power: The Effect of Angelina Jolie’s Personal Story of brca1

Download 28.08 Kb.
Pdf просмотр
Hajmi28.08 Kb.

February 2015

In Brief

Star Power: The Effect of Angelina 

Jolie’s Personal Story of BRCA1 

Mutation on Testing Rates among 

Commercially Insured Women

Lina Walker

AARP Public Policy Institute

Pamela Morin

Optum Labs

Following Angelina Jolie’s May 2013 op-ed article in the New York Times, BRCA testing rates 

increased among women enrolled in a large U.S. health insurance carrier. Her story heightened 

awareness of BRCA mutations and probably contributed to those higher testing rates.

For more information on this article, 

please visit



Angelina Jolie published her personal story of 

testing positive for a harmful mutation in the 

BRCA1 gene on May 14, 2013, in the New York 

Times. The BRCA1 and BRCA2 genes produce 

proteins that protect the stability of a cell’s genetic 

structure. When these genes are altered in a way 

that prevents them from functioning properly, it 

increases a woman’s risk of developing breast or 

ovarian cancer.


 Because of her positive test result, 

Jolie chose to have a preventive double mastectomy, 

even though she did not have a diagnosis of breast 


Angelina Jolie wrote: 

My doctor estimated that I had an 87 percent 

risk of breast cancer and a 50 percent risk 

of ovarian cancer … I wanted to write this to 

tell other women that the decision to have a 

mastectomy was not easy. But it is one that 

I am very happy that I made. My chances of 

developing breast cancer have dropped from 

87 percent to under 5 percent. I can tell my 

children that they don’t need to fear they will 

lose me to breast cancer.

Widespread Reaction Following Jolie’s Story

Given her iconic celebrity status, media coverage of 

her story was immediate and widespread, and the 

coverage lasted several months. Her story lit up the 

social and entertainment media outlets, and it was 

featured prominently in newspapers around the 


Her story also prompted a surge in the number of 

people seeking information about BRCA testing and 

mastectomies. On the day of her announcement, 

Wikipedia searches for BRCA1 shot up to nearly 

30,000, compared with just under 800 searches 

the day before. Page views for the National Cancer 

Institute’s fact sheet on preventive mastectomy 

spiked to more than 69,000 views that day, compared 

with only 87 views the previous Tuesday. Jolie’s story 

also increased referrals and BRCA testing at cancer 

clinics in Canada and the United Kingdom. 

February 2015


Increase in BRCA Testing 

Rates in the United States

Our study is the first to 

document an increase in 

BRCA testing rates among 

women enrolled in a large 

U.S. health insurance carrier.



Between April and May 

2013, BRCA testing rates 

(reported as number of tests 

per 10,000 women) increased 

by nearly 40 percent and 

remained elevated for the rest 

of the year. The number of 

tests rose from about 1,400 in 

April to more than 2,000 in 

May (see figure 1).

Figure 1

BRCA Testing Rates Increased in May 2013 and Stayed 


Source: Based on 2013 claims data from Optum Labs for women ages 35 and older.

Jolie’s announcement was 

published in the second week 

of May 2013. Our study shows 

that the spike in testing rates 

occurred during the week of 

her announcement. Two other 

news events could have contributed to higher 

testing rates at that time; however, given the 

patterns in the data, we conclude that the spike 

was largely attributable to Jolie’s story.



Women Similar to Jolie More Likely to Get 

BRCA Testing

After her story was published, twice as many 

women without a cancer diagnosis had the test

compared with women with a breast or ovarian 

cancer diagnosis. These women were probably 

concerned about their risk and sought testing for 

reasons similar to Jolie’s. Interestingly, before Jolie 

published her story, the reverse was true—more 

women with those cancer diagnoses got the test. 

In addition, women who were white, Hispanic, 

or 64 years of age and younger were more likely 

to get the test than older, black, or Asian women 

(see figure 2).

Figure 2

Increase in BRCA Testing Rates by Age and 


Source: Based on 2013 claims data from Optum Labs for 

women ages 35 and older.

Note: The percentage increase reflects the difference in 

the four-month BRCA testing rates before and after Jolie’s 



Although media coverage of Jolie’s story 

heightened awareness of the elevated risk of 

breast cancer with the BRCA gene mutation, 

its coverage of the rarity of having the harmful 


BRCA mutation was much more limited. Only a third of the stories in 

traditional elite newspapers mentioned the rarity of the mutation in 

the general population.


 On average, only about 1 percent of all women 

are likely to have the mutation; consequently, genetic testing is not 

appropriate or recommended for all women. 

Nevertheless, Jolie’s story shined a spotlight on and increased 

conversations about breast cancer. Before she shared her story, many 

women were probably unfamiliar with the risks associated with 

inherited BRCA mutations. Her experience facilitated conversations 

between women and their doctors or genetic counselors about testing 

and preventive measures. Those conversations enable women to make 

better-informed choices about their health care, which may save their 

lives or—at least—reduce their risk of cancer. 

1  See fact sheet on brCa by National Cancer 

Institute at:


2  This In brief provides a synopsis of our results. 

We refer readers to Insight on the Issues 2015:100 

for a fuller discussion of our findings, data 

limitations, and implications.

3  The other two potential influences are (a) news 

related to the u.S. Supreme Court hearing and 

ruling on the case against Myriad Genetics, which 

was the company that had a monopoly over brCa 

genetic testing at that time, and (b) a clinical 

expert panel release of guidelines that clarified 

for whom it is clinically appropriate to obtain a 

brCa test. 

4  Kalina Kamenova, Amir Reshef, Timothy Caufield

“angelina Jolie’s Faulty Gene: Newspaper 

Coverage of a Celebrity’s Preventive bilateral 

Mastectomy in Canada, the united States, and the 

united Kingdom,” Genetics in Medicine 16, no. 7 


In brief Ib 221, February 2015


601 e Street, NW

Washington DC 20049

Follow us on Twitter @aarPPolicy


For more reports from the Public Policy 

Institute, visit

aarP’s Public Policy Institute conducted this study using the Optum Labs database. The retrospective administrative claims data utilized in 

this study include medical claims and eligibility information from a large national u.S. health insurance plan. Individuals covered by this health 

plan, about 28.2 million (51 percent female) in 2013, are geographically diverse across the united States, with greatest representation in the 

South and Midwest u.S. Census regions. The health insurance plan provides fully insured coverage for professional (e.g., physician), facility 

(e.g., hospital), and outpatient prescription medication services. all study data were accessed using techniques that are in compliance with the 

Health Insurance Portability and Accountability Act (HIPAA) of 1996, and no identifiable protected health information was extracted during the 

course of the study.

Document Outline

  • Star Power: The Effect of Angelina Jolie’s Personal Story of BRCA1 Mutation on Testing Rates among Commercially Insured Women
  • Background
  • Widespread Reaction Following Jolie’s Story
  • Increase in BRCA Testing Rates in the United States
    • Figure 1. BRCA Testing Rates Increased in May 2013 and Stayed Elevated
  • Women Similar to Jolie More Likely to Get BRCA Testing
    • Figure 2. Increase in BRCA Testing Rates by Age and Race/Ethnicity
  • Discussion

Do'stlaringiz bilan baham:

Ma'lumotlar bazasi mualliflik huquqi bilan himoyalangan © 2019
ma'muriyatiga murojaat qiling