With BRCA Genetic Testing On Rise, Insurers Balk
They reported a sustained global surge in requests for BRCA genetic testing after the actress wrote about her preventive mastectomy two years ago. Last month, she gave another boost to awareness when she wrote about her recent surgery to remove her ovaries.
But raising awareness hasn't necessarily lowered barriers, BRCA experts say. People seeking to identify and manage their inherited cancer risk often confront conflicting, confusing medical guidelines, test options, and insurance coverage.
Magder, 40, a speech therapist in
That insurer, the
"The moral of the story is, there are not clear guidelines," Magder said.
Said
Identified two decades ago, BRCA1 and BRCA2 are among the most thoroughly studied genes in the human genome. When mutations wreck either of the genes' normal function as tumor suppressors, the lifetime risk of breast cancer can be as high as 87 percent, while ovarian cancer risk can be up to 50 percent. Jolie had those terrifyingly high odds.
Defective BRCA1 and BRCA2 genes drive about 10 percent of all breast cancers and 15 percent of ovarian cancers; mutations have also been linked to elevated risks of prostate cancer, pancreatic cancer, and melanoma.
FORCE (Facing our Risk of Cancer Empowered), a
Only a fraction of carriers have undergone testing.
"Two years ago, before the 'Angelina Effect,' fewer than 10 percent of people who harbor mutations knew it," Cook-Deegan said. "Now, it may be up to 20 percent."
During those two years, the testing landscape changed dramatically.
Myriad's comprehensive
"They've had so much experience, so their VUS rate is 2 percent or less," said
But at least 14 competitors have capitalized on the
<p>"Our goal is to make genetic testing as affordable and accessible as possible," said
Adding more genes to a panel may seem like a bargain to the layman, and to many doctors, but experts see potential problems. Companies are not required to prove the tests are accurate or have any impact on patient care.
"All these labs that jumped on the bandwagon for BRCA testing don't have to produce any evidence for that," said
Patients may not have access to professional genetic counselors.
"Some insurers require genetic counseling [before testing], some don't," said
Nine professional medical organizations in the U.S. and
As a result, insurers don't agree. The federal Affordable Care Act requires private insurance plans to cover testing for women with strong family histories who have not had breast or ovarian cancer. In contrast,
"And
Only about half of state
A charity called the
Testing may simply open the door to bigger obstacles, said Schlager at FORCE. Women with mutations are advised to consider undergoing enhanced cancer screening, taking risk-reducing medication, or having preventive surgeries. The problem is, insurers may balk.
"I'm helping a woman today who can't get a breast MRI, and another who can't get preventive mastectomy," said Schlager, 48, a BRCA1 carrier who has had her breasts and ovaries removed.
Magder recently changed jobs and is now assessing her health plan options. She is considering comprehensive BRCA testing. She and her husband, who have two children, have also discussed whether she should have preventive ovary removal within the next several years. That would throw her -- like Jolie -- into premature menopause.
"I have a little time to decide, but it's on my mind," she said.
She knows she may have to choose without all the information and resources she needs.
"I feel like the science is evolving and the policy is trying to catch up," she said. "But the craziness takes a huge emotional toll on women."
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