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Angelina Jolie's revelation that she had a preventive double mastectomy to reduce her risk of getting breast cancer was hailed as a brave move by patient advocates.
But Ms. Jolie's medical scenario is one that is less likely to play out for many women, said advocates, doctors, and lawyers in New York, because poor and middle class women whose insurance doesn't cover genetic testing for cancer risk may find the cost too expensive.
"There's a huge disparity in who gets genetic testing," said NYU Langone Medical Center's Dr. Kathie Ann Joseph, an assistant professor and breast surgeon.
Ms. Jolie wrote in a New York Times op-ed that after blood tests showed she carried genetic mutations that put her at high risk of developing the disease, she had her two healthy breasts removed. That reduced her breast cancer risk by 90%, according to research studies.
New York State Medicaid and private insurance plans generally pay for breast surgery like Ms. Jolie's (known as prophylactic mastectomy), including breast reconstruction by a plastic surgeon, but it pays only after there is proof that a patient is at high risk of getting the disease.
Detecting mutations in genes known as BRCA1 and BRCA2 can offer such proof.
The problem is that unless patients already have cancer, or have a family history where breast or ovarian cancer struck many relatives, particularly at a young age, insurance will not cover the more than $3,000 test, Dr. Joseph said.
The price is set by Myriad Genetics, a global firm headquartered in Salt Lake City that patented the BRCA1 and BRCA2 genes.
"Many women, particularly poor women of color, have the mutation but don't find out until they have cancer," she said. About 12% of breast cancer cases are associated with genetic mutations, according to a Myriad spokesman.
The company invested more than $500 million in bringing the test to market in 1996, he said, stressing that for patients who meet certain criteria, the test is almost always covered. Under the Affordable Care Act, it will be fully covered with no deductible, he said.
"As long as you meet the medical eligibility that cost is covered — and why would you want to have the test if you didn't need it?" he asked.
Those criteria include a cancer diagnosis, a multigenerational family history of the disease, particularly family members who had cancer at a young age, like Ms. Jolie's mother.
Researchers and advocates would like to see the price of the test drop, so it would be available to more women without restrictions other than age, much as screening mammography is. Federal guidelines call for routine mammography screening for most woman starting at age 50, but some patient advocacy groups and many doctors recommend the tests starting at age 40.
That could happen if the ACLU and a group of genetics researchers, including scientists at Montefiore Medical Center and Columbia University, prevail in a lawsuit. They have challenged Myriad's right to patent human genes.
The plaintiffs won the original case, filed in federal court in New York, but the company appealed and the U.S. Supreme Court heard arguments in the case in April. It is expected to render a decision in June, said Sandra Park, a Manhattan-based ACLU lawyer involved in the case.
The researchers suing Myriad can test for BRCA mutations, but because of Myriad's patent, researchers cannot use the data to help a patient who tests positive. "They can't tell patients the results, they can only use them for research," Ms. Park said. "The only work-around for the researchers is to strongly urge that these patients go get a Myriad test."
Meanwhile, big bucks are at stake for the company. It has performed more than a million tests since 1996, currently at the rate of about 250,000 a year.
According to Ms. Park, plaintiffs in the case testified that the actual cost of the analysis is about $200.
BRCA mutations also play a role in predicting ovarian cancer risk. Positive tests for mutations usually mean doctors will recommend surgical removal of the patient's ovaries and Fallopian tubes, Dr. Joseph said. "We don't do that until they are at least 35," she said, "When women are usually finished having their families."
She praised Ms. Jolie's decision to go public with her story.
"It was very brave of her and it doesn't mean her decision was the right one for every woman but it's good that she started the conversation," Dr. Joseph said.
Ms. Jolie's disclosure has also been good for Myriad: it's stock price shot up yesterday based on speculation that more women will want to get tested.
Gale Scott writes for Crain's New York Business, a sister publication of Business Insurance.