Genetic testing costs are often covered, either in part or in full, by insurance companies when an individual meets certain criteria. There are often programs available to assist individuals with costs related to genetic testing, cancer screenings, and other procedures. There are also laws in place that generally forbid health insurers or health plan administrators from requesting or requiring genetic information from an individual or the individual's family members, or using it for decisions regarding coverage, rates, or preexisting conditions. A personal or family history of cancer with or without genetic testing, could potentially affect your life insurance rates.
In the Unites 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 are excellent at determining whether insurance is likely to cover the testing. The Affordable Care Act may make BRCA testing even more accessible by removing co-pays for BRCA testing.
Some insurance guidelines mirror the National Comprehensive Cancer Network guideline, which means that if you meet medical criteria for testing, your insurance company will cover the cost. Other insurance companies have more specific criteria.
Lastly, some companies do not cover appropriate testing. For example, Medicare covers BRCA testing in many instances but only when the individual has had cancer. Someone with a known mutation in the family with no personal history of cancer is not covered. Medicaid coverage typically varies by state.
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. Some 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.
There are also options for individuals who lack insurance coverage of genetic testing.
- Uninsured individuals may be eligible for free testing at certain laboratories
- Under-insured individuals can apply for financial assistance through an organization called Cancer1Source, which will cover up to $520 of the expense. Fund availability may vary.
The medical center where you were tested may have special charity funds, though typically stringent criteria must be met and coverage is considered on a case-by-case basis.
If testing for one person in the family is important for everyone else, sometimes families chip in to cover the cost of testing for that person, knowing that other family members will either not need the testing or require a cheaper test, based on the family member's result. Your genetic counselor can help you determine if these types of strategies may be appropriate for you or your family.
There are different types of BRCA testing, and recently, more laboratories have begun to offer BRCA testing. Historically, the cost of the test ranged from $475-$4000, but the cost of the test varies by laboratory. Genetic specialists are helpful in determining what type of testing is needed.
The first person to undergo testing in the family often has complete sequencing of both the BRCA1 and BRCA2 genes, which is the most expensive test (it can cost about $3300 dollars). If no mutation is detected, an additional test looking for deletions, duplications, and large rearrangements in the genes can be done for a significantly smaller additional charge. Once an individual in a family tests positive, other family members typically only require testing for a single mutation, which is a simpler test that costs significantly less.
For individuals of Jewish ancestry, a simpler and less expensive test can often be performed that looks at the common BRCA mutations within that population. The family history determines whether the more expensive, comprehensive sequencing test is necessary for individuals of Ashkenazi Jewish ancestry. Even if a mutation is found within a family, subsequent family members who undergo testing should still be tested for the other Ashkenazi Jewish founder mutations because they are common within that population.
Insurance companies usually cover increased breast cancer screening for BRCA carriers. Your health care providers may need to write letters of medical necessity to your health insurance company but national guidelines outline that breast MRI and mammography should be done annually starting at age 25, so insurance companies typically cover them.
Actress and BRCA carrier Christina Applegate created a foundation called Right Action for Women. This foundation, in collaboration with another called Patient Services, Inc. provides financial assistance for breast MRI for high risk women. You or your healthcare provider can apply for assistance here . Other organizations in your area may have similar programs. 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.
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 requesting or requiring genetic information from an individual or the individual's family members, or using it for decisions regarding coverage, rates, or preexisting conditions. GINA also protects the individual from hiring, firing, or promotional decisions in the workplace based on genetic information.
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 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.
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.
In order to underwrite an individual life insurance policy, life insurance companies typically review an individual's medical and family history. A personal or family history of cancer with or without genetic testing, could potentially affect your life insurance rates. Some life insurance companies ask about genetic testing, while other insurers do not. This may change in the future. Some people choose to purchase life insurance before undergoing genetic testing since GINA and HIPPA do not apply to life insurance.