Women who discover they carry a hereditary gene mutation that dramatically increases their risk of breast and ovarian cancers face big decisions and the possibility of tens of thousands of dollars in medical costs.
Carriers of the BRCA gene mutation have up to an 85% chance of getting breast cancer and a 60% chance of getting ovarian cancer in their lifetime, according to FORCE, a nonprofit for people affected by hereditary breast and ovarian cancers. Those who make the tough decision to remove as much of the breast and ovarian tissue as possible can significantly decrease their risk of cancer, but doing so isn't cheap.
Initial genetic testing for mutations on the BRCA1 and BRCA2 genes, which typically serve as tumor suppressors, costs roughly $4,000 when not covered by insurance, according to Myriad Genetics, the only laboratory that analyzes the tests. Subsequent tests for family members of a mutation carrier tend to be cheaper because the initial mapping has already been done.
If someone tests positive, doctors recommend they have a mammogram and M.R.I scans at least once a year, which can add up to several thousand dollars. And if they opt for a preventive ovary removal surgery or double mastectomy with reconstructive surgery, the costs can climb to tens of thousands of dollars or more, though insurance usually covers at least part of the bill.
While most insurance companies will also pay for genetic testing, patients have to be deemed "high-risk" first.
For women, that often means they either have to be diagnosed with breast cancer before age 45 or have multiple close blood relatives (like an aunt, mother or sister) who have been diagnosed with breast or ovarian cancer. Men who are diagnosed with breast cancer at any age are typically covered. Yet some insurers have broader criteria than others, said Lisa Schlager, vice president of community affairs and public policy at FORCE.
"We do have people who shouldn't get tested and end up getting it covered," said Schlager. "And then we have people who should be tested and they get denied."
Medicare, for instance, is stricter than most private insurers and will only cover testing for women who have already been diagnosed with cancer.
According to Myriad, 95% of eligible patients receiving the tests are insured and out-of-pocket costs are typically less than $100. Under the Affordable Care Act, BRCA genetic testing is now classified as preventative care, requiring no out-of-pocket cost for those who are deemed eligible, although some plans still don't recognize that requirement yet, said Myriad spokesman Ron Rogers.
The company also offers a financial assistance program for low-income patients -- those who earn less than two times the federal poverty limit, which is $22,980 for a single-person household -- without health insurance.
But for those who are uninsured and don't qualify, the costs can be prohibitive.
"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," actress Angelina Jolie wrote in a New York Times editorial announcing she had undergone a preventive double mastectomy after testing positive for a BRCA1 mutation.
Claudia Gilmore, who underwent a preventive double mastectomy in 2011 at the age of 23, spent roughly $2,500 out of pocket for her surgeries, which she said would have cost around $100,000 without insurance coverage. She also took a month of paid time off work using her employer's short-term disability policy, something she said not all workers would be able to do.
"The point of getting a BRCA genetic test is so you can do something with that information," said Gilmore, now a public health graduate student at the University of California Los Angeles. "If a woman doesn't have health insurance, how could she even consider preventive surgery or ongoing medical surveillance for the rest of her life?"
Uninsured patients could receive genetic testing by participating in research studies or seeking out financial assistance programs at hospitals and local nonprofits. Some surgeons are also able to arrange free preventative surgeries for uninsured patients who test positive, said Ellen Matloff, director of Cancer Genetic Counseling at Yale Cancer Center and a plaintiff in a lawsuit challenging Myriad's patent for the BRCA gene.
Still, many simply choose to go without the test.
"Those people come to see me, we tell them they're not covered and how much it will cost, and we never send their sample to Myriad," Matloff said. "It happens more often than we like."