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    Basics

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
  • which laboratory performs the test

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 services

Under Medicare's new guidelines, BRCA1 and BRCA2 genetic testing is covered for people with:

1. Personal history of breast cancer + one or more of the following:

  • Diagnosed age ≤45 y, with or without family history
  • Diagnosed age ≤50 y or two breast primaries, with ≥1 close blood relative(s) with breast cancer ≤50 y or ≥1 close blood relative(s) with ovarian cancer/fallopian tube/primary peritoneal cancer
  • Two breast primaries when first breast cancer diagnosis occurred prior to age 50
  • Diagnosed at any age, with ≥2 close blood relatives with breast and/or epithelial ovarian/fallopian tube/primary peritoneal cancer, at any age
  • Close male blood relative with breast cancer
  • Personal history of epithelial ovarian/fallopian tube/primary peritoneal cancer
  • If of certain ethnicity associated with higher mutation frequency, (eg, founder populations of Ashkenazi Jewish, Icelandic, Swedish, Hungarian or other) no additional family history required
  • a close relative with a known BRCA1 or BRCA2 gene mutation

2. Personal history of epithelial ovarian/fallopian tube/primary peritoneal cancer.

3. Personal history of male breast cancer.

Medicare does not currently cover the cost of genetic testing in individuals who do not have a personal history of cancer. 

Insurance coverage of genetic services

Most health insurance companies will pay for genetic testing if a person meets particular criteria indicating that hereditary cancer might run in the family. Several companies that performs genetic testing, have financial assistance programs. One of the labs, Myriad Genetics has an insurance reimbursement assistance program which  facilitates insurance coverage of genetic testing by obtaining preauthorization.

Medicaid coverage of genetic services

Several State Medicaid programs cover BRACAnalysis® for qualifying individuals. State requirements vary. A qualified genetics expert can help determine if you meet state Medicaid guidelines for genetic testing coverage. The states that offer Medicaid coverage include:

Alaska
Arizona
California
Colorado
Connecticut
Delaware
Florida
Illinois
Indiana
Iowa
Kansas
Kentucky
Maryland
Massachusetts
Michigan
Minnesota
Missouri
Montana
New Jersey
New York
New Mexico
Ohio
Oklahoma
Oregon
Tennessee
Texas

Utah
Virginia
Vermont
Washington
West Virginia
Wyoming

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 for the Cure fund local programs which provide genetic testing to uninsured or underinsured people. You can look up affiliates by state through this link. 

The Cancer Resource Foundation offers co-pay assistance for cancer genetic testing.

Some limited research studies cover the cost for genetic testing as part of the study.

Dr. Steven Narod, a researcher in Canada, offers free genetic testing through his research registry for those people who meet the following criteria:

  • Under 30 with breast cancer
  • Bilateral breast cancer at any age
  • Any woman with a known mutation in the family
  • Patient agrees to baseline questionniare and follow-up questionnaire.

Turn around time will be six months. For more information, contact Sonia Nanda, the study coordinator at: Sonia.nanda@wchospital.ca

Genetic testing within research

Some limited research studies cover the cost for genetic testing as part of the study.

Dr. Steven Narod, a researcher in Canada, offers free genetic testing through his research registry for those people who meet the following criteria:

  • Under 30 with breast cancer
  • Bilateral breast cancer at any age
  • Any woman with a known mutation in the family
  • Patient agrees to baseline questionniare and follow-up questionnaire.


Turn around time will be six months. For more information, contact Sonia Nanda, the study coordinator at: Sonia.nanda@wchospital.ca

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.

Patient Services Incorporated (PSI) has a program funded by Right Action for Women which covers the cost for MRI for eligible high-risk women.

Local chapters of organizations sometimes offer free screening or financial assistance for medical screening.

Patient Protection and Affordable Care Act (PPACA)

Signed into law in March 2010, PPACA contains several provisions that impact individuals and families affected by cancer:

  • Access to health insurance for all Americans—including those who are currently uninsured
  • Elimination of pre-existing conditions as barrier to coverage
  • Elimination of annual and lifetime caps on insurance coverage
  • Capping out-of-pocket healthcare expenditures
  • Coverage of young adults up to the age of 26 on their parent’s plan
  • Coverage for screening and preventative services including breast, colorectal and cervical cancer screenings—without a co-payment

• Coverage for those enrolled in clinical trials

Below are further details on relevant provisions:

Coverage for Genetic Counseling and Testing

The federal government recently released regulations that clarify which preventive services will be covered under the Affordable Care Act without cost sharing for patients enrolled in private insurance plans. Insurance plans under the Affordable Care Act cannot apply a co-pay or deductible to genetic counseling for inherited breast and ovarian cancer risk and BRCA testing in women with a family history of cancer as outlined by the United States Preventive Services Task Force. For these patients, insurance companies must cover the entire cost of genetic counseling and BRCA testing. 

The current regulations do not cover the following:

  • genetic counseling or testing in people with a family history indicative of Lynch Syndrome (which is associated with colon, uterine, and ovarian cancer) or other hereditary cancer syndromes;
  • genetic counseling and testing for women who have already been diagnosed with cancer;
  • risk-management services such as increased surveillance and prophylactic surgery which has been proven to reduce the risk for developing cancer and the risk of dying in high-risk women; and
  • genetic counseling and testing in men.

These guidelines are based on USPSTF’s Risk Assessment, Genetic Counseling, and Genetic Testing for BRCA-Related Cancer in Women recommendations released in 2013. 

Elimination of pre-existing conditions

PPACA will eliminate the use of pre-existing conditions to deny or impose waiting periods on insurance coverage. While already in place for children, this provision is not effective for adults until 2014. In the interim, temporary high-risk pools (PCIPs), have been established at the state level or through federal-state partnerships to assist patients with pre-existing exclusions that limit coverage. According to healthcare.gov, 23 states and the District of Columbia elected to have their PCIP program administered by the federal government; 27 states have chosen to run their own programs.

Elimination of annual and lifetime limits

PPACA eliminates annual and lifetime limits on insurance coverage. PPACA bans insurance plans beginning on or after September 23, 2010 from cutting off policyholders when a lifetime benefit was reached. The law phases out annual limits over a period of three years and will completely ban annual caps on January 1, 2014.

Capping out-of-pocket healthcare expenditures

PPACA places caps on how much money insured people will have to spend out of their own pockets for healthcare services that are covered in the new law’s essential health benefits package. These caps on out-of-pocket spending will go into effect in 2014. The out-of-pocket spending caps will follow a sliding scale: Those with lower and middle incomes will pay less out of pocket than those with higher incomes. The new caps guarantee that consumers will not have to pay more than a set amount annually in out-of-pocket expenses for covered services. 

Coverage for those enrolled in clinical trials

The law requires health plans to pay the routine care costs of patients who participate in clinical trials for the prevention, detection and treatment of cancer and other life-threatening conditions.

For more information on the Patient Protection and Affordable Care Act, visit healthcare.gov.


Disclaimer: Health links are made available for educational purposes only. This information should not be interpreted as medical advice. All health information should be discussed with your health care provider. Please read our full disclaimer for more information.

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