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Genetic testing costs are often covered, either in part or in full, by insurance companies when an individual meets certain criteria, and in recent years, testing has become much more affordable. There are often programs available to assist individuals with costs related to genetic testing, cancer screenings, and other procedures. There are laws in place to prevent health insurers from using genetic test results as a reason to deny someone health insurance, or decide how much someone pays for health insurance (see below for information about GINA, the Genetic Information and Nondiscrimination Act). These laws do not apply to other insurances, such as life insurance. Therefore, a personal or family history of cancer (with or without genetic testing) could potentially affect life insurance rates and eligibility.

Does insurance cover BRCA testing?

In the United States, BRCA testing is usually covered by insurance if the patient meets certain criteria. Insurance coverage and criteria varies by insurance plan, and genetic counselors will review potential costs and insurance coverage with you during your appointment.

Some insurance companies have specific testing criteria or do not cover testing in certain situations, even when it is considered medically appropriate. For example, Medicare has specific BRCA testing criteria that only includes individuals with a personal history of cancer. Therefore, Medicare does not cover someone with a known mutation in the family who has no personal history of cancer. Medicaid coverage typically varies by state.

Will I have to pay anything for BRCA testing?

Remember that like all medical care, just because your insurance "covers" something, it does not mean you will have no out-of-pocket cost. You may have to pay:

  • A co-pay: a set dollar amount you pay for a service.
  • Co-insurance: a certain percent of the total cost of a service.
  • The cost of testing up to your deductible, which may be several thousand dollars if you have a high deductible plan.

You will need to review the details of your insurance plan to understand your coverage. Your genetic counselor or the genetic testing laboratory may be able to assist in determining the cost. Most laboratories will pre-verify your information to determine the out of pocket cost, others will contact you if the cost will be above a certain threshold, and some labs offer payment plans.

What if I have no insurance or my insurance will not cover my BRCA testing?

There are also options for individuals who lack insurance coverage of genetic testing.

  • Uninsured individuals may be eligible for free testing at certain laboratories.
  • If you do not meet your insurance company’s BRCA coverage criteria, certain laboratories have reduced rates for individuals who are paying out of pocket.
  • The medical center where you were tested may have special charity funds. Coverage is usually considered on a case-by-case basis.

How much does BRCA testing cost?

There are different types of BRCA testing, and recently, more laboratories have begun to offer BRCA testing. At times, testing is fully covered by insurance. If not covered by insurance, there are self-pay are available starting at around $250, though the cost of the test varies by laboratory. Genetic specialists are helpful in determining what type of testing is recommended.

Does insurance cover increased breast cancer screening for BRCA carriers?

Insurance companies usually cover increased breast cancer screening for BRCA carriers.

What if I cannot afford my breast cancer screening?

Many states participate in the National Breast and Cervical Cancer Early Detection Program (Centers for Disease Control) that may cover some preventative screenings, such as mammograms, for eligible individuals.

Will a positive genetic test result make it harder for me to get health insurance?

Some people have worried that genetic testing for future health risks could affect their ability to get or keep their health insurance. Fortunately, a federal law called the Genetic Information and Nondiscrimination Act, or GINA, was passed in 2008 and enacted in May 2009 and works together with pre-existing nondiscrimination laws such as the Health Insurance Portability and Accountability Act (HIPAA).

GINA generally forbids health insurers or health plan administrators from using genetic test results for decisions regarding coverage or rates; health insurance companies cannot consider genetic testing results as a preexisting condition. GINA also protects the individual from hiring, firing, or promotional decisions in the workplace based on genetic information. There is also additional protection available under individual states’ laws and through the Affordable Care Act.

What are the limitations of GINA?

GINA does not generally apply to employers with fewer than 15 employees, the military, Veteran's Administration, Indian Health Service, or the Federal Employee Health Benefits Plan. However, all but small employers have similar protections in place.

Currently, GINA does not address concerns about disability, long-term care, or life insurance. It is important to understand that genetic non-discrimination laws do not protect people from discrimination based on having had a cancer diagnosis.

For more information about GINA, visit ginahelp.org.

What is HIPAA and how can it protect genetic information?

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) was enacted by congress. It provides protections for participants in group health plans only. Group health plans cannot:

  • Increase premiums for the group based on genetic information- this includes family history as well as genetic testing results;
  • Deny enrollment based on genetic information;
  • Impose pre-existing condition exclusions; or
  • Do other forms of underwriting (taking on the risk of an individual) based on genetic information, such as excluding coverage of certain services, based on genetic information provided.

In the individual health insurance market, GINA also prevents health insurance companies from using genetic information to deny coverage, raise premiums, or impose pre-existing condition exclusions. Insurance companies are prohibited from asking individuals or family members to take a genetic test. A violation of any of these regulations can lead to fines.