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Does Obamacare cover the costs of genetic testing?

When Angelina Jolie revealed in May 2013 that a preventive double mastectomy had drastically reduced her chances of dying from breast cancer, she credited genetic testing with potentially saving her life. Now it's easier for other women to follow in her footsteps, thanks to Obamacare, which makes genetic testing free for more women than ever before.

genetic testing

What is genetic testing?

Genetic testing is the process of checking one's DNA for disorders that are associated with a particular disease. In Jolie's case, genetic testing revealed that she carried a faulty mutation of a gene called the BRCA1 gene. When the BRCA1 gene or another gene called the BRCA2 gene don't function correctly, your chances of getting cancer rise dramatically.

Faulty mutations of the BRCA1 and BRCA2 genes are responsible for about 20 percent to 25 percent of hereditary breast cancers and approximately 15 percent of ovarian cancers, according to the National Cancer Institute at the National Institutes of Health.

Those with a faulty mutation can see their risk of getting breast cancer rise to as high as 87 percent and their risk of developing ovarian cancer go up to 44 percent, according to Myriad Genetics, a company that makes a genetic test for the BRCA1 and BRCA2 genes.

"Genetic testing can sometimes help us quantify a person's risk of getting cancer and then help them make decisions about how they can lower their risks," says Rebecca Nagy, president of the National Society of Genetic Counselors. For example, a woman with a faulty mutation of the BRCA1 or BRCA2 gene can get a mastectomy as Jolie did, or have her ovaries removed to reduce her chances of getting breast or ovarian cancer.

Not everybody needs to undergo genetic testing, Nagy says. It mostly benefits those who have a high risk of a particular disease, such as those with a family history of cancer or heart disease.

Genetic counseling typically takes place first, in which a counselor lets you know whether your risk is high enough to warrant taking the test in the first place. A genetic counselor can also help you to determine what steps you should take if you test positive for a particular gene disorder.

Genetic testing covered by Obamacare

When it comes to genetic testing, knowledge doesn't come cheap. Genetic counseling alone can cost a couple hundred dollars, Nagy says. On top of that, the test itself can cost upward of $2,000 , according to the federal National Institutes of Health.

While some insurance providers covered part of the cost for BRCA1 and BRCA2 testing in the past, women often had to take on a sizable portion of the bill themselves, according to American Cancer Society Cancer Action Network President Christopher Hansen.

Thanks to the Affordable Care Act, that's no longer the case. Women who have a high risk of developing breast cancer can receive genetic counseling and testing for free as a preventive service under the law, says Alicia Hartinger, a spokeswoman for the Department of Health and Human Services. According to federal guidelines regarding the implementation of the Affordable Care Act, "genetic counseling and BRCA testing, if appropriate, must be made available as a preventive service without cost-sharing."

Who should consider getting genetic testing? 

Women considered to be high risk for breast cancer include:

  • Those with two first-degree relatives (parent, children or siblings) who had breast cancer with at least one being diagnosed before the age of 50.
  • Those with three or more first- or second-degree relatives (grandparent, grandchild, uncle, aunt, nephew, niece, half-sibling) with breast cancer.   
  • Those with a combination of breast and ovarian cancer among first- and second-degree relatives.
  • Those with a male family member who had breast cancer.
  • Ashkenazi Jewish women with one first-degree relative or two second-degree relatives with either breast or ovarian cancer. 

Genetic testing not covered by Obamacare

While testing for the BRCA1 and BRCA2 gene mutations is 100 percent covered for high-risk patients under Obamacare, those who have a low risk of carrying the faulty gene would likely have to pay for some or all of the test themselves.

Genetic testing for diseases other than breast cancer are also not considered a preventive service under the Affordable Care Act, so an insurer may or may not cover the entire cost of the procedure.

Some genetic testing advocates are urging the government to broaden the coverage for genetic testing under the Affordable Care Act. For example, a collection of organizations --The Ovarian Cancer National Alliance, FORCE (Facing Our Risk of Cancer Empowered), Bright Pink and CCARE Lynch Syndrome -- point out that the Affordable Care Act doesn't cover 100 percent of the cost for genetic counseling and testing in men nor does it cover genetic counseling and testing for women who have already been diagnosed with cancer.

However, others believe that the coverage of testing for the BRCA1 and BRCA2 genes is a step in the right direction since women who have a family history of breast cancer can get a better idea of their risk without breaking the bank.

For these women, cost is no longer an issue. "That can make all the difference," Nagy says.

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