Angelina Jolie Mastectomy: Genetic Test That Revealed Star's Breast Cancer Risk Is Costly, Often Not Covered By Insurance

Angelina Jolie dropped a bombshell on Tuesday, revealing in a New York Times op-ed that she opted to surgically remove both of her breasts after a genetic test showed she had an elevated risk for breast cancer.

The announcement of the actress' double mastectomy has sparked conversations about breast health and an interest in genetic testing, but many women with Jolie's condition may find that their options are more limited than hers.

The actress says she made the decision after finding out that she carries a mutation in the gene BRCA1, which her doctors estimated conferred an 87 percent risk of developing breast cancer and a 50 percent risk of ovarian cancer. Jolie's mother died of ovarian cancer at 56.

“Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could,” she wrote.

BRCA1 and BRCA2, or breast cancer susceptibility genes 1 and 2, belong to a family of tumor-suppressing genes. They make proteins that, in conjunction with other proteins made by the body, help repair damaged DNA. If a cell’s DNA is too damaged for repair, BRCA proteins and others will signal that a cell should be destroyed. Certain mutations in BRCA1 or BRCA2 can disable this security function, allowing cells with damaged DNA to continue growing and proliferating, which can lead to breast or ovarian cancer.

There are hundreds of identified mutations in these two genes, some of which do not raise your cancer risk. But harmful BRCA mutations can raise a woman’s likelihood of developing breast cancer by age 70 by up to 70 percent. Harmful BRCA1 mutations can crank up a woman’s risk of developing ovarian cancer by age 70 up to 46 percent; for bad BRCA2 variants, it’s up to 23 percent increased risk. With a blood sample, doctors can look for a single mutation or scrutinize the whole gene.

Testing for BRCA mutations can cost anywhere from a few hundred dollars to a few thousand, depending on whether you are testing for one particular mutation (because a family member had that specific mutation) or examining the whole BRCA 1 and BRCA2 genes. The single-site tests in the lower cost range are options for people with a relative who has already had the wide-ranging genetic tests, which average at roughly $3,000 per gene.

Utah's Myriad Genetics has a monopoly on BRCA testing, thanks largely to its patents for the BRCA1 and BRCA2 genes. The U.S. Supreme Court is currently weighing whether or not those patents should stand, with opponents arguing that companies should not be able to grab exclusive rights to products of the human body. Myriad other biotechnology companies say taking away the ability to patent human genes would hamper research into drugs, vaccines and genetically modified crops.

Insurance companies will usually cover tests for BRCA1 and BRCA2 only if a patient meets very specific criteria. For a woman who has not yet developed breast cancer, she might need to have three close female relatives with breast cancer, two close blood relatives with ovarian cancer or breast cancer at an unusually young age or a male relative with breast cancer. Belonging to a certain ethnic group that has an increased risk for BRCA mutations, like Ashkenazi Jewish, may also bump up a woman's chances of getting the test covered.

But the average woman probably wouldn’t get coverage for a BRCA test if her situation was the same as Angelina Jolie’s: a single close female relative that died of ovarian cancer after age 40.

“It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live,” Jolie wrote in the New York Times.

While the stringent requirements for insurance coverage might seem draconian, the U.S. Preventative Task Force holds that without an extensive family history of breast cancer to justify the test, the harm can outweigh the benefit. Women may opt for medication and procedures they don’t need, based on a false positive or an inconclusive test. In April, the government panel reiterated its warning that women should be tested for BRCA mutations only after genetic counseling.

If a woman tests positive for a harmful BRCA1 or BRCA2 mutation, it is likely that her insurance will cover preventative surgery to remove her breasts or ovaries. Surgery isn't the only option, though. Taking hormonal contraception for five or six yeras can lower the risk of developing ovarian cancer in women with BRCA mutations -- though doctors recommend that course of treatment for women in their late 20s or early 30s, as hormonal birth control taken during the teenage years can cause early development of breast cancer in women who are genetically susceptible.

Another option is the anti-breast cancer drug tamoxifen, which may help prevent breast cancer in women with BRCA2 mutations. Tamoxifen can also help guard against a second breast cancer in women with BRCA1 or BRCA2 mutations who have already had a separate incident of breast cancer.

Preventative mastectomies are still somewhat medically controversial. Sometimes, women who develop cancer in one breast opt to have both removed. But if the patient does not have harmful BRCA1 or BRCA2 mutations or an extensive family history of breast or ovarian cancer, removing both breasts is probably medically unnecessary. The surgery can lead to complications and a more difficult recovery.

But for women at high risk of breast cancer based on family history, preventative mastectomies can be an extremely valuable option. One 1999 study in the New England Journal of Medicine compared 214 high-risk patients who opted for preventative breast removal with 403 of their sisters who did not undergo the procedure. Nearly 40 percent of the sisters had a diagnosis of breast cancer, while only 1.4 percent of the patients that elected to have surgery developed the disease.