FIRST PERSON | Angelina Jolie's recent decision to have a prophylactic mastectomy in order to reduce her breast cancer risk has raised awareness about the BRCA gene mutation. A report released by Bio News Texas on May 29 states that insurance companies are reluctant to pay for BRCA testing and genetic counseling. I know firsthand how difficult it can be to get insurance to pay for this test. Unless an extensive family history is proven, it is not a covered procedure. It is expensive; the test costs $3,000 to $4,000. The cost makes testing unavailable for many women.
Assessing BRCA risk
Most people do not need genetic counseling and testing. BRCA mutations account for only 5 to 10 percent of all breast cancers. About one in 400 women carry a BRCA mutation. Men carry the gene mutation as well. It is extremely difficult for men to get insurance coverage for BRCA testing.
I decided to have BRCA testing done because it meant the difference between a bilateral mastectomy (removal of both breasts) being my only option, or having other surgeries available to me. I have an above-average occurrence of breast cancer in my family. In addition to my family history, a diagnosis of breast cancer before age 50 and my ethnic background were considered. After all the information was evaluated, it was determined that I was a good candidate for the test and insurance would most likely pay for it.
What insurance covered
BRCA testing from Myriad Labs cost $3,500. Insurance covered part of it, leaving me with a large outstanding balance. I was fortunate to find help for my out-of-pocket expenses. Assistance availability varies by location. If you need BRCA testing and cannot afford it, talk to your physician or breast-health navigator to see if they can refer you to programs that can help you.
Myriad Labs is being sued over whether they have the right to patent a naturally occurring human gene. Currently Myriad Labs holds the patent to the BRCA1 and BRCA2 testing procedures and they hold the patent to the BRCA gene sequence. This patent prevents other companies from developing a less-expensive test for the BRCA gene mutation. It gives Myriad Labs exclusive rights to research the BRCA gene sequence, reducing the potential to find other important mutations within the gene sequence.
National guidelines for genetic testing
Should all women seek genetic testing? No. The National Guideline Clearinghouse (NGC) clearly states who should consider testing and when testing should be recommended. The test is a great tool for women who need it. However, the current cost of the test and the reluctance of insurance companies to pay for it make it unavailable to many women.
Lynda Altman was diagnosed with breast cancer in November 2011. She is an advocate for women's health issues. Lynda feels that affordable genetic testing should be available to every woman who needs it.
- breast cancer
- genetic testing
- BRCA mutation