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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The results were negative, but her genetic counselor suggested that Raker follow up with a second Myriad test that can identify less common mutations not detected in the initial test. While health insurance had covered the first test, Raker would have had to pay out of pocket for the second, which cost $650.

Raker, who works part time from her home in Williamsport, Pa., and who pays for her own insurance, ultimately declined the second test.

Cancer.gov

“In balancing the cost of the test against everyday things, it did not seem reasonable for me to be indebted for that kind of money,” said Raker, 45, whose family had been struggling financially. She said she is “thrilled” about the outcome of the Myriad case. “I believe this will result in more comprehensive and affordable testing options, which I hope to access much sooner as a result of the decision.”

Some women referred for testing simply do not follow through. Fear and fatalism are sometimes why, said Sue Friedman, a 15-year survivor of hereditary breast cancer and executive director of Facing Our Risk of Cancer Empowered (FORCE). The not-for-profit advocates for those affected by hereditary breast and ovarian cancer.

“I meet a lot of women who say, ‘I don’t want to know,’” said Friedman. There may also be implications for other family members.

“One of my strongest messages is: ‘You don’t have to decide whether to test or not, but go see a genetics expert.’ It’s about giving people their options and information and then letting them make an informed decision.”

A survey by FORCE found that even with the Genetic Information Nondiscrimination Act, “some respondents indicated that they don’t trust insurance companies,” said Friedman. “Despite this fear, there have been few documented cases of insurance discrimination.”


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