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Angelina Jolie Drives Up BRCA Test Rates But Health Benefit Questionable

Angelina Jolie has publicly written about her choice to have prophylactic double mastectomy. (gageskidmore/Flickr)
Angelina Jolie has publicly written about her choice to have prophylactic double mastectomy. (gageskidmore/Flickr)
This article is more than 2 years old.

It was a blockbuster revelation. Angelia Jolie's 2013 editorial, "My Medical Choice," announced that she'd had a preventive double mastectomy based on the results of a BRCA test.

"I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer, " Jolie wrote. "It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options."

Women flocked to the test. Researchers at Harvard Medical School reviewed the insurance records of more than 9.5 million women. Their study, out in the journal BMJ, found a 64 percent increase in women getting the BRCA test two weeks after the editorial as compared to two weeks prior. And the effect lasted. By the end of 2013, testing rates were still 37 percent higher.

But it doesn't appear that the spike in the number of women tested for BRCA gene mutations led to more detection. The rate of women who had the test and then a mastectomy declined.

"In health care, celebrity endorsements can be a low cost means of raising awareness," said Sunita Desai, a Seidman Fellow in Health Policy and Economics in the Department of Health Care Policy at Harvard Medical School. And "there are still peace-of-mind benefits that these women may have gotten. But in terms of identifying BRCA mutations, it doesn't seem like the editorial was that effective."

The problem, says Desai, is that the editorial did not target women at risk for BRCA mutations, which the National Cancer Institute says are relatively rare.

It's not clear how many of the additional tests were unnecessary, but the increase overall was expensive. The study estimates there were 4500 additional BRCA tests in the 15 business days after Jolie's editorial, at a cost of $13.5 million.

Some insurers now require that women receive genetic counseling before they are cleared for genetic tests to determine if they have an increased risk for breast or ovarian cancer. Genetic counselors say the Harvard research may encourage more health plans to include that requirement.

"You do start to question whether the test is being offered appropriately to the right people," said Mary Freivogel president-elect of the National Society of Genetic Counselors.

Freivogel says counseling alone, without a genetic test, gives many women peace of mind. But, she adds, the price of the test is becoming more affordable, now around $200.

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Martha Bebinger Twitter Reporter
Martha Bebinger covers health care and other general assignments for WBUR.

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