BRCA 'Jewish' Cancer Gene Mutations Often Go Untested — At Deadly Cost

One Woman's Survival Fight Doomed by Lack of Testing

At Supreme Court: Lisa Schlager and daughter Rachel protest Myriad Genetics’ claim to a patent on the BRCA gene, which they say raised the cost of testing.
Courtesy of Lisa Schlager
At Supreme Court: Lisa Schlager and daughter Rachel protest Myriad Genetics’ claim to a patent on the BRCA gene, which they say raised the cost of testing.

By Karen Iris Tucker

Published August 13, 2013, issue of August 09, 2013.
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According to a study by researchers at the University of Pennsylvania, released in April, only 53% of newly diagnosed breast cancer patients who were at high risk of carrying a BRCA1 or BRCA2 mutation, based on age, diagnosis and family history of breast or ovarian cancer, reported that their doctors urged them to be tested for the defective genes. The study findings were drawn from surveys completed by 2,258 women between the ages of 18 and 64 diagnosed with breast cancer in Pennsylvania in 2007.

Passing on Risk  If one parent carries a BRCA mutation, a child’s risk of inheriting it is one in two.
National Institutes of Health
Passing on Risk If one parent carries a BRCA mutation, a child’s risk of inheriting it is one in two.

Jewish women, the study found, were more likely than non-Jewish women to be referred for testing and to actually take the test.

“That could be due to greater awareness of the importance of genetic testing in the Ashkenazi community,” said lead researcher Anne Marie McCarthy. Forty-six percent of Jewish women in the study said they got tested, compared to 25% of their non-Jewish study counterparts.

Another study, published in 2010 in the Journal of Cancer Education, found that newly trained doctors had “significant deficits” in their knowledge of cancer risks and inheritance patterns. Ellen Matloff, director of Cancer Genetic Counseling at the Yale Cancer Center, said such findings are concerning because genetic counseling and testing are now an integral part of surgical decision-making and medical care for newly diagnosed breast cancer patients. “Unfortunately, many clinicians are still not aware of this shift in medical management,” she said.

Even when appropriately referred by clinicians, many patients have been thwarted by cost. Until the June 13 decision by the U.S. Supreme Court that invalidated Myriad Genetics’ patent on the BRCA gene, the test, if not covered by insurance, could cost individuals more than $4,000.

Matloff said that within five hours of the ruling, seven companies announced plans to offer BRCA testing. “One company slashed Myriad’s pricing by 50% and another promised BRCA testing for less than $1,000 in the next year,” she said.

McCarthy, the Penn study researcher, said that women with a household income of less than $30,000 were 50% less likely to have had BRCA testing than women with a household income of more than $70,000.

Kathleen Raker, a plaintiff in the Myriad case, experienced firsthand how cost has curtailed BRCA testing. Raker has a worrying family history of disease: Her mother died of breast cancer at 28. Her maternal grandmother succumbed to the disease at 52. Petrified for most of her life of developing cancer, Raker, in 2007 at age 39, received a Myriad BRCA test.


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