Towards the end of her widely read New York Times op-ed detailing her decision to get a preventative double mastectomy and lower her risk of breast cancer, Angelina Jolie noted something significant: Many American women can't afford to take the genetic test for the breast cancer gene. At $3,000, Jolie writes, the cost of testing "remains an obstacle for many women."
The 37-year-old actress does not mention why that test is so expensive. The primary reason: A Salt Lake City, Utah-based biotech company called Myriad Genetics holds a patent on the BRCA1 and BRCA2 genes. The company’s main product, BRACAnalysis, tests for a mutation in those genes that comes with a high risk of breast and ovarian cancer.
Myriad’s patent on the genes is being challenged in the Supreme Court by organizations that claim the company’s patent is hampering scientific research. In addition, the patent essentially gives the company a monopoly on the tests, meaning patients have nowhere else to go for a second opinion.
“The test is expensive, a lot more expensive than it ought to be,” Sofia Merajver, the scientific director of the Breast Oncology program at the University of Michigan told The Huffington Post on Tuesday.
For its part, Myriad says patients almost never pay the full cost of the test, because it’s covered by most insurance plans. “The test is widely reimbursed by insurance companies with over 95 percent of patients covered,” Myriad spokesman Ron Rogers wrote in an email statement to The Huffington Post. “For patients in need, Myriad has a patient assistance program to offer testing at reduced costs or for free.”
As Myriad notes, the test is not much of a financial hurdle for those who have good health insurance. For them, the test has an out-of-pocket cost of $100 on average, according to the company.
However, not everyone has access to that kind of health insurance. “In many minimally insured environments or with the public programs, it’s been fairly challenging," Merajver said. "They don’t have access to the counseling, to the good process that [Jolie] was able to go through."
The good news is that the cost of testing may yet fall when more provisions of the Affordable Care Act, or Obamacare, go into effect in 2014. The law requires insurers to cover the costs of testing for breast cancer risk, although it doesn't mandate that surgery costs be covered.
But BRACAnalysis testing will still only be covered for patients who are recommended for it, and just 2 percent of women are considered at high enough risk of breast cancer receive such a referral, Janet Coffman, a health policy researcher at the University of California San Francisco told MyHealthNewsDaily in March.
What’s more, most women don’t know to ask for it, according to Gretchen Ahrendt, the director of Surgical Breast Services at Magee-Women’s Hospital at the University of Pittsburgh Medical Center. Ahrendt told HuffPost she often ends up recommending the test for women who are referred to her for breast cancer surgery, but noted, “In that case it’s a little late, because she’s already been diagnosed with breast cancer."
“When we recommend testing, it’s an expensive test,” Ahrendt said. As a result, Ahrendt says her office always checks with the patient’s insurance company to make sure the test will be covered.
The testing for BRCA1 was just the first step of many in Jolie's medical journey. The Hollywood star revealed Tuesday that after after finding out she tested positive for the gene, she had multiple surgeries, including an hours-long procedure to remove her breast tissue and then another surgery weeks later to reconstruct her breasts and add implants.
For women who discover they have the gene mutation and have health insurance, it’s likely their provider will cover at least some of the cost of the surgery Jolie had, according to Merajver. Still, in many cases insurance companies won’t pay for preventive surgery, according to a CNN op-ed by Arthur Caplan, the director of the bioethics division at NYU’s Langone Medical Center. In addition, many who will cover the mastectomy surgery won’t pay for the reconstructive procedure Jolie had.
There are other options for those women who determine they’re at high risk of developing breast cancer, Merajver said, including more intense and frequent screenings and in some cases medications.
But those solutions can often be just as costly as Jolie’s surgery, because they’re required over long periods of time, according to Ellen Matloff, the director of Cancer Genetic Counseling at Yale.
“Quite likely having a preventive surgery is the least expensive option,” she said.
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