Policy Archive

FORCE Leads the Charge for Medicaid Coverage of Genetic Testing

Insurance Coverage & Barriers

Genetic testing for increased susceptibility to breast, ovarian, and other cancers has become the standard of care for prevention and risk management in the U.S. Medicaid coverage of health services, however, is managed independently by each state. Of the 50 state Medicaid programs, only 4—Alabama, Rhode Island, North Carolina, and South Carolina—do not cover genetic counseling and/or testing for inherited genetic mutations such as BRCA1 or BRCA2.

FORCE learned that the North Carolina Division of Medical Assistance (DMA) is reviewing its policy on offering genetic testing. We mobilized quickly to write comments and secured the support of over 30 partner nonprofit and medical professional organizations in an effort to encourage NC Medicaid to offer this invaluable service to its enrollees. Read the comments submitted on March 23, 2018.

The vast majority of health insurers see the value of identifying individuals who may carry an inherited genetic mutation that causes increased risk of cancer (if that person meets certain personal and/or family health history criteria). In fact, under the Affordable Care Act (ACA), many insurance plans are required to cover BRCA genetic testing for women who qualify and other specified preventive services with no copay or cost-sharing.

Medicaid and Medicare are not bound by the ACA mandate. Most Medicare regions cover BRCA testing only if a woman has already been diagnosed with cancer. Four regions, representing 19 states, have more expansive policies that include multigene panel testing if more than one mutation may be indicated, as well as testing for men.

FORCE continues to advocate that all Americans—regardless of gender, cancer status, economic situation, or health insurance provider—should have access to evidence-based preventive services including, but not limited to:

We are hopeful that NC Medicaid will institute a policy that includes coverage of genetic counseling and testing for those who should receive it. Moving ahead, we plan to work with the other three state Medicaid programs that currently fail to provide access to cancer genetic services. 

Take Action Now 2021 Priorities Advocacy Archive Public Policy Initiatives

News Briefs

3/31/2021 - Expressed support for legislation (S.5355/A.2151) that would establish genetic counseling as a licensed profession in the state of New York.

3/16/2021 - Signed on in support of the Medicare Multi-Cancer Early Detection Screening Coverage Act of 2021 (H.R. 1946), which will give CMS authority to cover blood-based multi-cancer early detection tests and future test methods (like urine or hair tests), once approved by the FDA.

2/17/2021 - In a letter to President Biden, underscored the urgency of prioritizing access to the COVID-19 vaccine for patients with active cancer and survivors of cancer.

2/4/2021 - Joined a group of 75 orgs in a letter to HHS expressing concern that new Medicare Payment Modernization models proposed by the prior administration could jeopardize access to medically necessary prescription drugs and harm patients with serious illnesses.

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