When Angelina Jolie went public with her decision to have a mastectomy in 2013 because she is genetically at risk for breast cancer, rates of testing for the most common genes linked to the disease skyrocketed.
The test became so popular that medical researchers came up with a name for the phenomenon: the Angelina Effect. They’re expecting the same wave of requests from patients after Jolie revealed that she had her ovaries and Fallopian tubes removed because of another genetic test showing she had a high risk for 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. The insurers say that the tests are unproven and may lead patients to seek out medical care they don't need.
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And at between $2,000 to $4,900 for the new tests, which analyze 20 or more genes at once, you probably can’t afford it out of pocket.
Taking a risk
That's a dangerous miscalculation, according to a range of doctors, genetic counselors, academics and diagnostics companies. 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.
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 — it’s a mandate of 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.
The science is there
But Mary Daly, a physician who chairs the National Comprehensive Cancer Network guidelines panel for breast and ovarian cancer, points to what is, in effect, a catch-22: Without insurance coverage of these tests, there isn't enough data to analyze how effective they are.
"If we don't start looking at these genes, we'll never obtain the data we need," she said.
Leading academics in genetic research also dispute the claim that multi-gene tests produce too much confusing information, saying they often lead to beneficial steps such as cancer screenings.
"The utility of panel testing is that we know there are a lot more genes beyond BRCA1 and BRCA2 that are associated with cancer predisposition," said Colin Pritchard, a University of Washington geneticist.
Hereditary cancers are expected to account for about 5 percent of the 230,000 cases of invasive breast cancer that will be diagnosed this year in the United States.