Will my insurance cover it?

Many insurance companies cover genetic testing when it is indicated. Each insurance company and plan is different. The best way to determine if you have coverage is to reach out to a genetic counselor or other knowledgable provider to help you through this process. If you do not have coverage, there are options available that may help you cover the cost of genetic testing. Each insurance company has their own policy on whether or not they will approve genetic testing and, if so, how much they will cover. These policies are constantly changing, particularly now as genetic testing becomes much more common and new tests and technologies are coming out every day.

What is the Affordable Care Act?

The Affordable Care Act of 2010 includes a provision that provides insurance coverage with no out of pocket costs to patients for certain preventative healthcare services that are approved by the United States Preventative Services Task Force (USPSTF). In 2013, the USPSTF came out with updated guidelines on genetic counseling and testing of the BRCA1 and BRCA2 genes that recommends genetic counseling and testing for unaffected women with a family history suggestive of a possible BRCA mutation. If you meet the criteria stated in the USPSTF guidelines, your insurance is likely to cover your genetic counseling and testing with no out of pocket costs to you.

The USPSTF guidelines do not address a few important areas:

  • As these guidelines are meant for preventative medicine and recommendations are meant to target BRCA counseling and screening in the general population, the focus of these guidelines centers on testing unaffected individuals in the family when, in many cases, genetic testing is most informative when performed on an individual in the family who has been diagnosed with cancer. (See Who in my family is the best person to begin genetic testing?) Furthermore, the USPSTF maintains that their recommendations do not hold to women with a history of breast or ovarian cancer, even if it a past history and they currently have no evidence of disease and are “unaffected”.
  • The patient population covered by the guidelines also does not include women who have a known familial BRCA1 or BRCA2 gene mutation in their family

To read the USPSTF recommendations, click here. For more information on genetic counseling and testing recommendations from the Affordable Care Act click here. Facing Our Risk of Cancer Empowered (FORCE) put out a great response to the USPSTF recommendations and some of the limitations. You can read about that here.

What if My Insurance Doesn’t Cover Genetic Testing?

For individuals that will be responsible for paying for some – or all – of their genetic testing, there are some resources that may be able to help:

  • Many labs offer self-pay discounts or payment plans that vary by lab. (Prices may also vary greatly by laboratory).
  • Many patient support groups also offer financial aid for individuals who need help covering genetic testing. Your genetic counselor or provider can help you access some of these services.
  • For individuals with NO insurance, many labs offer financial assistance and in some cases will even waive the cost of genetic testing all together for individuals that meet specific medical and financial criteria.
  • Many genetic counseling offices offer special clinics to help under or uninsured patients.

Don’t let your insurance coverage fears stop you from getting genetic testing – speak to a genetic counselor or your health care provider to look into options that may be able to help you.

Do I need to worry about insurance discrimination with genetic testing?

The Genetic Information Nondiscrimination Act (GINA) is a federal law that was passed in 2008 that protects individuals from discrimination by their health insurance and employers based on their genetic information. Under GINA, it is against the law for health insurers to request or require your genetic information. Insurance companies cannot use genetic information to make decisions about your coverage. They cannot drop you from their plans, use your genetic information as a preexisting condition, or change your premiums based off of genetic information.

This does not mean that your insurance company WON’T get your genetic information. However, GINA protects you from discrimination by health insurance companies based on your genetic information. GINA also protects you from discrimination through your employers. Under GINA, your employer cannot request or require anyone to give them your genetic information, and they cannot use genetic information to make decisions about hiring or firing their employees.

Currently GINA does NOT apply to the following types of insurance:

  • Short-term insurance
  • Long-term insurance
  • Disability insurance
  • Life insurance
  • Members of the military (i.e. Tricare insurance)
  • Veterans
  • Federal employees that are enrolled in federal employee health plans
  • The Indian Health Service.

Click here for more information on GINA.