Genetic testing not always covered by insurance

By Susan Ladika Posted : 05/31/2013

genetic testing and health insuranceIn the wake of her aunt's death due to cancer and her recent double mastectomy, Angelina Jolie is sure to generate more headlines after her first public appearance since her bombshell announcement.

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Jolie's revelation that she underwent a preventive double mastectomy due to her high risk for developing both breast and ovarian cancer shone a spotlight on genetic testing for inherited diseases. What's not so clear is whether your health insurance company will cover all of the costs.

Mutations in the BRCA1 gene -- which Jolie carries -- and the BRCA2 gene elevate the risk of a woman developing breast and ovarian cancer.

According to FORCE, a nonprofit focused on those with inherited breast and ovarian cancers, a woman with a BRCA mutation faces a 55 percent to 85 percent of developing breast cancer, and a 10 percent to 60 percent risk for developing ovarian cancer.

In Jolie's case, she had an 87 percent risk of developing breast cancer and 50 percent risk of ovarian cancer, she wrote in an Op-Ed article, "My medical choice," for The New York Times.

While some health insurance companies clearly spell out the criteria they use for covering the cost of BRCA1 and BRCA2 testing, that isn't always the case, says Lisa Schlager, vice president of community affairs and public policy with FORCE.

One woman's journey

Maia Magder discovered the vagaries of health insurance companies when seeking BRCA testing. Her mother and maternal aunt both were diagnosed with breast cancer before the age of 40, her paternal aunt was diagnosed at age 41, and her maternal grandparents and her brother have had other forms of cancer. (See: "Guide to cancer insurance: 5 must-know facts.")

Magder is of Ashkenazi Jewish descent, which puts her at higher risk for carrying a BRCA1 or BRCA2 mutation.

Her insurer was willing to pay for genetic testing -- only if she tested positive for the mutation. She didn't pay out of pocket, but had to sign an agreement stating that if her insurer wouldn't pay, she'd cover the costs.

There are several levels of testing available, and Magder chose the test that examines the most common mutations, which costs $500.The results were negative.

She learned more extensive testing would cost $3,000. "It was prohibitively expensive to us. This is the loopiest thing I've seen. Clearly there is something hereditary in my family, they have just not found the gene," Magder says. (See: "How to appeal a health claim denial -- and win.")

There are other rarer, inherited mutations other than BRCA1 and BRCA2 that put women at high risk for breast cancer. Li-Fraumeni syndrome, caused by a mutation of the TP53 gene, and Cowden syndrome, linked to a PTEN gene mutation, are two examples. Genetic tests are available for these rarer breast cancer conditions, but are not often covered by insurance, Mary Daly, chair of the department of clinical genetics at Fox Chase Center in Philadelphia, told NPR.

Magder decided to proceed with a prophylactic double mastectomy despite her negative test results from basic genetic tests. "I needed the peace of mind," she says.

Her health insurance company covered the costs of the mastectomy and reconstructive surgery, after her doctor recommended that she have the procedure.

Some insurance companies have specific guidelines for genetic testing

Typically, health insurance plans will cover the cost of genetic testing if your doctor recommends it, though, as Magder's case points out, insurance providers have different policies about which tests are covered, according to the Genetics Home Reference website, run by the U.S. National Library of Medicine.

Cigna, for example, outlines the criteria you must meet for the insurance company to cover the cost of BRCA1 and BRCA2 testing. Cigna looks at things such as whether you've been diagnosed with breast cancer or any of your close relatives have.

It's one of more than 30 genetic testing policies Cigna has for various types of heritable disorders, such as certain cardiac conditions and colorectal cancers, says Julie Kessel, senior medical director for coverage policy.

Cigna has covered genetic testing for years, and requests have soared in the past two to three years, as technology has improved, Kessel says. Depending on the condition, a doctor's recommendation might be required for Cigna to agree to cover the costs.

If a woman suspects she might carry the BRCA1 or BRCA2 mutation, "we believe very much that a woman at risk really should have the testing. It might change their lives in a very positive and significant way," Kessel says.

Under provisions of the Patient Protection and Affordable Care Act, new health plans are required to pay for genetic counseling and testing for women who have a high risk of having the BRCA gene. (See: "Free women's preventive health services roll out under reform.")

If you suspect you might be at risk, Schlager says you should speak with your physician and a genetic counselor. Genetic counseling is typically covered by insurance.

The counselor will look at yours and your family's medical history, and help assess your risk. The counselor also can serve as your advocate if you need to fight your insurer over genetic testing, Schlager says.

An estimated 940,000 people in the United States -- including men -- carry one of the mutations, Schlager says, and only about 10 percent are aware they do.

If you test positive, almost all insurance companies cover the cost of a prophylactic mastectomy and reconstruction, or an oophorectomy, which removes the ovaries.

Life, long-term care and disability insurance and genetic testing

The Genetic Information Nondiscrimination Act prevents discrimination from health insurers and employers due to someone's genetic makeup, but the law does not cover long-term care insurance, life insurance or disability insurance, according to the National Institutes of Health.

Genworth, which offers long-term care and life insurance, doesn't ask an applicant if they've undergone genetic testing, but if the underwriting process turns up that they have, it could be used as part of the underwriting process, spokesman Tom Topinka says.

If someone is considering genetic testing for BRCA1 or BRCA2, genetic counselors will typically advise them to buy life insurance before they undergo the procedure, Schlager says.

For someone who has had preventive surgery, "the reality is that they probably have a lower risk than the average population," Schlager says.


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