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.

(page 4 of 4)

Until now, access to counseling — potentially a long drive from a patient’s home — has been another obstacle to testing. Counseling is now, however, available on the Internet and by phone, according to Rebecca Sutphen, a molecular and clinical geneticist who is president and chief medical officer of InformedDNA, a nationwide network of genetic experts offering the service.

“So if you have Aetna, Cigna or United Healthcare, you can literally call an 800 number and get an appointment at your convenience in your home that will be covered by your insurance,” said Sutphen.

In 2007, after reading the article on BRCA risks, Watson-Levy spoke with a genetic counselor, who recommended that she be screened. She tested positive for a BRCA mutation, and then underwent what she thought would be preventive surgeries — removal of her remaining breast and her fallopian tubes and ovaries in a procedure called an oophorectomy. Precancerous cells were found in Watson-Levy’s previously unaffected breast. Worse, she had late-stage fallopian tube cancer.

“I had no symptoms. I had no pain,” she said. “I never would have known.”

Despite the many years of delay in learning of her genetic risk, and the missed opportunity to take preventive measures sooner, Watson-Levy believed that getting tested when she did ultimately bought her valuable time for what she called her “crusade” to raise awareness so that others can make potentially life-saving medical decisions.

“This topic of conversation is very strong in me,” she said in April, from her home in Hayward, Calif., where she was receiving hospice care. Her friend Marcia O’Kane recalled that a few weeks later, Watson-Levy was elated by Jolie’s revelation and the media attention it received.

Watson-Levy died on June 21 of fallopian cancer, surrounded by friends. O’Kane organized a celebration of Watson-Levy’s life on July 28, fittingly held at a silent film theater and museum where she and Walter had shared many moments of laughter.

Karen Iris Tucker is a freelance writer who writes about health, entertainment and culture. Contact her at feedback@forward.com



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