Finding Health Care
Financial help
Overview
The cost of genetic testing ranges from several hundred to several thousand dollars. Costs vary according to factors including:
- whether a previously-identified mutation exists in the family
- whether the family's ancestry suggests the possibility of a particular mutation (for instance Jewish founder mutations or Polish founder mutations)
- which hereditary predisposition is being tested for
- whether an expedited test (with results in 7-10 days) has been ordered
Most insurance companies will cover the cost of genetic testing in individuals who have either a personal history or family history of cancer and who meet certain guidelines.
Financial assistance for diagnosis or treatment of cancer is sometimes available. Fewer resources are available for those seeking assistance with the cost of genetic counseling or testing, or preventive options such as chemoprevention or prophylactic surgery. Preventive medicine is sometimes considered elective and, therefore, not always covered by assistance programs. Requesting help from a health care professional who is knowledgeable in genetics ensures that the genetic test ordered for you is appropriate. A genetics counselor or expert can also help you request medical reimbursement for testing.
Medicare coverage of genetic testing
Under Medicare's new guidelines, BRCA1 and BRCA2 genetic testing is covered for:
- Clinically affected individuals (invasive breast cancer or ovarian cancer at any age) meeting at least one of the following criteria:
- one or more first-degree (mother, father, sister, daughter) or second-degree (aunt, uncle, grandmother, niece, granddaughter) relatives with invasive breast cancer diagnosed before age 50, or
- one or more first or second-degree relatives with ovarian cancer, or
- one or more first or second-degree relatives with male breast cancer.
- Individuals with a personal history of at least one of the following (no family history required):
- Invasive breast cancer before age 50, or
- Ovarian cancer at any age, or
- Both invasive breast cancer and ovarian cancer at any ages, or
- Male breast cancer at any age.
- Individuals with a family member (related by blood) with a known BRCA1 or BRCA2 mutation.
- Individuals of Ashkenazi (Eastern European) Jewish ancestry with invasive breast cancer at any age, or meeting any of the above listed (1-3) criteria.
In patients with breast or ovarian cancer who are from high-risk families without a known BRCA1 or BRCA2 gene, the entire gene must be sequenced to identify possible mutations. In those families with a known BRCA1 or BRCA2 gene mutation, only a single mutation site sequence is required. In the case of individuals with Ashkenazi Jewish ancestry, testing for 3 mutations common in this population is warranted even after a single mutation has been identified in their family member.
In addition to the above, the following criteria must also be met:
- both pre-and post-test genetic counseling must be provided by a qualified and appropriately trained practitioner; and
- an informed consent form signed by the patient prior to testing
Unaffected family members should be tested only after finding a mutation in an affected relative to adequately interpret the test. In this situation, the deoxyribonucleic acid (DNA) from the unaffected family member can be tested specifically for the same mutation of the affected family member without having to sequence the entire gene. Testing an unaffected family member without knowing the genetic status of the family may lead to difficulties in interpreting the test result.
Genetic testing is considered a screening test for unaffected family members in the absence of a known BRCA1, BRCA2, hMSH2, hMLH1, or APC mutation in the family. Medicare does not cover screening tests.
In a family with no identified mutations, a cancer survivor who qualifies for testing under Medicare should be tested first,if possible. If a mutation is identified, testing in subsequent family members is less expensive.
Insurance coverage of genetic testing
Most health insurance companies will pay for genetic testing if a person meets particular criteria indicating that hereditary cancer might run in the family. Myriad Genetics, the company that performs genetic testing, has an insurance reimbursement assistance program which facilitates insurance coverage of genetic testing by obtaining preauthorization.
Financial assistance for genetic testing
A genetic counselor can help determine if you qualify for a financial assistance program to cover the cost of genetic testing. For more information on genetic counseling and how to find a genetic counselor see our section on this topic.
Some affiliates of the Susan G. Komen Breast Cancer Foundation fund local programs which provide genetic testing to uninsured or underinsured people. You can look up affiliates by state through this link.
Genetic testing within research
Some limited research studies cover the cost for genetic testing as part of the study.
Researchers at the H. Lee Moffitt Cancer Center & Research Institute are conducting a study to determine how genetics may contribute to breast cancer among young African-American women. The study is accepting African-American women throughout the U.S. who were diagnosed with breast cancer before age 50 and includes genetic testing as part of the protocol.
Creighton University offers genetic testing on a research basis at no charge to patients who are qualified/ approved by their collaborating geneticist. Contact the study coordinator to see if you qualify for Creighton's testing program.
Financial assistance for medical care
Public assistance, such as Medicaid may be available if you are ineligible for other programs. The Centers for Medicare and Medicaid Services website has a link to state Medicaid programs. There are specific criteria for Medicaid eligibility.
Most hospitals have social workers or financial assistance counselors who can help explain your options and direct you to resources which provide assistance in paying for medical care. Some hospitals designated as Hill-Burton facilities receive money from the federal government. These hospitals must provide a certain amount of free or reduced-cost health services every year to those who cannot pay. Each facility may decide which type of free or reduced-cost care it will provide, and must publish this information in the newspaper, as well as provide a written notice to you upon request for Hill-Burton Assistance.
Local chapters of organizations sometimes offer free screening or financial assistance for medical screening.
Other websites
Free genetic testing research study through Creighton University.
Genetic testing research study for African-American premenopausal women with
breast cancer
Provides free genetic testing for those who qualify.
Medicaid site for consumer information
Medicare coverage criteria for genetic testing
Myriad reimbursement assistance program
National Coalition of Cancer Survivorship
Includes a page on finding financial help for cancer treatment.
The Lynne Cohen
Cancer Screening & Prevention Project for High Risk Women Bellevue Hospital
Center/NYU Cancer Institute
This program makes a special
effort to provide excellent medical care to uninsured, underserved minority
women from communities that have traditionally had fewer medical services
available.