Breast Cancer Gene: Why Most Women Can't Do What Angelina Jolie Did

On Tuesday, Angelina Jolie drew headlines with her announcement that she has undergone a preventative double mastectomy. As she wrote in the pages of The New York Times, a blood test revealed that she carries a damaged BRCA1 gene -- a defect that greatly increases the odds of a woman getting breast cancer. Facing what she said was an 87 percent chance of developing the disease, she decided to undergo a prophylactic double mastectomy, an operation that reduced her risk to 5 percent.

Jolie's decision to have a prophylactic mastectomy before any sign of the cancer had manifested, and her willingness to openly discuss it, is shedding fresh light on breast cancer -- as well as on the very real problems with how the American medical community deals with this disease. Every step in Jolie's process -- from the tests that uncovered her faulty gene, to the operations she underwent to protect against it, to the post-surgery reconstruction -- highlights shortcomings in the American health care system, and inequities in the care that most Americans receive.

To put it another way, when it comes to breast cancer care, your health may often be trumped by your finances: even if your best bet is to follow in Jolie's footsteps, you might not be able to afford the screening, care and surgery that may have saved her life.

Genetic Testing

The first issue is the test. The BRCA1 and BRCA2 tests, which may have saved Jolie's life, cost $3,000 to administer. Donna Faranda, helpline coordinator for Share Cancer Support, notes that there are four parts to the genetic test, but that many insurance companies only cover the first two. Paying for the last two parts is where things can get expensive.

Under the Affordable Care Act, getting the full genetic test for breast cancer will soon become a lot less expensive, at least under some circumstances. Starting in August, insurance companies will have to cover the tests, without cost-sharing, if a health care provider determines that doing so is "appropriate" -- which is to say, if the women have had breast cancer, have a family history of breast cancer, or otherwise seem particularly high-risk. In other words, the final decision on whether or not to test will come down to a doctor, nurse or other health care provider.

While it's frustrating that the ACA leaves this open to interpretation, it isn't hard to see why it does: Fewer than 1 percent of women carry flawed BRCA1 or BRCA2 genes, and -- according to the National Cancer Institute -- flaws in those genes only account for between 5 and 10 percent of breast cancer cases. In other words, the (very expensive) test will only detect a small portion of potential breast cancer victims.

Who Owns Your Genes?

The equation would be a lot different if the genetic tests were cheaper -- and therein lies another tale. Myriad Genetics, the company that produces the breast cancer tests, patented BRCA1 and BRCA2 in the late 1990s. According to critics, this effectively shut down scientific research on the two genes -- and gave the company a highly lucrative monopoly on testing. Currently, the Supreme Court is hearing arguments on the case; in June, it's set to determine whether or not a company can claim a patent on a gene that naturally occurs in every human body.

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But while the ACA and the Supreme Court are potentially working to lower the price of BRCA tests, a full genetic scan remains beyond the means of many women. Faranda notes, however, that there are ways of getting around the high cost of genetic tests. Universities, hospitals and government researchers regularly conduct clinical trials to study breast cancer or test new treatments -- and participants in these trials often receive genetic testing free of charge. To find a trial, Faranda advises looking at the National Cancer Institute's clinical trials page, the National Institutes of Health's clinical trials page, or BreastCancerTrials.org, a website that works to connect women concerned about breast cancer with trials that can help them.

After the Test

But getting tested is only part of the problem. After a woman is diagnosed with a faulty BRCA1 or BRCA2 gene -- or after a tumor presents itself -- there's still the matter of treatment. Studies have shown that prophylactic mastectomies, like Jolie's, can reduce the risk of breast cancer by more than 90 percent in women with flawed BRCA 1 and 2 genes.

Preventative mastectomies can also greatly reduce health care costs. Andrea Rader, a spokeswoman for Susan G. Komen, points out that a double mastectomy, without complications, can cost as little as $15,000. But after cancer emerges, the prices rapidly rise -- sometimes to $40,000 or more -- as doctors have to deal with more extensive reconstructions, metastasized tumors, and other complications.

While some states require insurers to cover prophylactic mastectomies for high risk women, there is no federal law mandating that they do so. Some insurers -- like Aetna -- cover the surgery; others don't.

The situation, unsurprisingly, is much worse for uninsured women. Rader notes that many women who don't have insurance also don't qualify for Medicaid or Medicare. This can have a devastating effect on diagnosis and treatment. "If you're not insured, its $300 for this and $200 for that and $3,000 for the other thing," Rader explains. "It makes you reluctant to get the help you need." And, in the case of breast cancer, delays in treatment can translate into complications and a higher mortality rate.

But even if everything works out -- if a woman is able to get genetically screened, and if she is able to get her insurance to pay for a prophylactic mastectomy -- many women don't receive the excellent reconstructive work that Jolie had. A big problem, says Faranda, is that many women aren't aware that they have a legal right to reconstruction: By law, any insurer who pays for a mastectomy must also cover reconstruction. Needless to say, insurers are often not eager to tell their customers that they have free access to an expensive procedure.

Ultimately, as Jolie herself notes, the high cost of health care makes early diagnosis "an obstacle for many women." But, while most women at high risk for breast cancer don't have access to Jolie's finances, as Faranda and Rader both point out, there are numerous resources available to help. The key, both for those who have been diagnosed with breast cancer and those at risk of developing the disease, is knowing what your community, your insurer, your hospital, and your doctor can do to help you.

Bruce Watson is DailyFinance's Savings editor. You can reach him by e-mail at bruce.watson@teamaol.com, or follow him on Twitter at @bruce1971.

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