Medical researchers call it the "Angelina Effect," the surge in demand for genetic testing attributable to movie star Angelina Jolie's public crusade for more aggressive detection of hereditary breast and ovarian cancer.
But there's a catch: Major insurance companies including Aetna, Anthem and Cigna are declining to pay for the latest generation of tests, known as multi-gene panel tests, Reuters has learned. The insurers say that the tests are unproven and may lead patients to seek out medical care they don't need.
That's a dangerous miscalculation, a range of doctors, genetic counselors, academics and diagnostics companies said. While they acknowledge that multi-gene tests produce data that may not be useful from a diagnostic standpoint, they say that by refusing or delaying coverage, insurance companies are endangering patients who could be undergoing screenings or changing their diets if they knew about the possible risks.
The tests have come a long way since Jolie, 39, went public in 2013, revealing that she underwent a double mastectomy after a genetic test found she carried mutations in the BRCA1 and BRCA2 genes, indicating a high risk of breast and ovarian cancer. She disclosed last month that she had her ovaries and fallopian tubes removed.
The new panel tests, which can cost between $2,000 to $4,900, analyze 20 or more genes at once. That allows healthcare professionals to establish possible DNA links to other cancer-related conditions such as Lynch syndrome and Li-Fraumeni Syndrome earlier. Humans have about 23,000 genes.
Susan Kutner, a surgeon at a Kaiser Permanente hospital in San Jose, California, who serves on a U.S. Centers for Disease Control and Prevention advisory committee on young women and breast cancer, said more women with a family history of cancer should be able get these tests.
"If we have members who are not being tested in a timely manner, we know that their risk of cancer in the long run costs us and them a lot more," Kutner said.
Kaiser, which insures its own members, covers panel tests for patients with family histories of cancer.
That's not so at three of the four largest managed care companies. Aetna Inc, Anthem Inc and Cigna Corp state in their policies that in most cases they don't cover multi-gene panel tests. The fourth, UnitedHealth Group, covers the tests if patients meet certain criteria.
All insurers cover screenings for BRCA1 and BRCA2 and for certain other genes for women who have family histories of cancer. Indeed, such coverage is mandated by the Affordable Care Act, known as Obamacare.
But many insurers said they simply don't know enough about the specific risk of other mutations to justify coverage of the new family of tests.
They also say that the tests may find mutations with a well-established link to a disease, but which are difficult to interpret. These results could lead to patients taking misguided actions about medical care, such as preventive chemotherapy and surgery.
Aetna's medical director of quality management, Robert McDonough, said Aetna pays for testing of individual genes but that "the routine application of a panel would be considered unproven."
Cigna's David Finley, national medical officer for enterprise affordability, said multi-gene tests are more likely to find unknown mutations for which there are no care guidelines.
"This is where there is controversy and disagreement," Finley said. "My problem is what do you do with that information?"
Instead, he said, there need to be more clinical trials and research to establish exact risks and medical guidelines for each type of gene mutation.
Healthcare professionals said that while they recognize the downside of patients getting unclear information about their genetic makeup, genetic counseling and support from doctors can mitigate risks.
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