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Current Policy Priority

Coming Soon... Reducing Hereditary Cancer Act

Genetic Counseling & Testing

Under the existing Medicare guidelines, only a person with “signs, symptoms, complaints, or personal histories of disease” meets the criteria for coverage of medical services. Recognizing the value of cancer prevention and early detection, in recent years Congress has passed legislation allowing for coverage of cancer screenings (e.g., mammograms, colonoscopies and PSA tests) for the “average risk” population, and specific screenings (e.g. colonoscopies every 2 years) for some people considered high-risk. Unfortunately, many screenings and interventions needed by individuals at high risk of cancer are not covered.

Medicare covers genetic testing only for beneficiaries already diagnosed with cancer (regardless of family cancer history or a known genetic mutation in the family). If someone without cancer (a previvor) learns they have one of these mutations prior to Medicare eligibility, or they pay out of pocket for genetic testing and find that they carry a hereditary cancer mutation while on Medicare, coverage of many medically necessary high-risk cancer screenings or risk-reducing surgeries is legally prohibited.

With the availability of low-cost genetic testing, a growing number of Medicare beneficiaries are learning that they have an inherited cancer-causing mutation but they aren’t able to access the health services they need to prevent or catch cancer earlier, when it is less invasive and more easily treated. As a result, they face a dilemma: forgo the expert-recommended screenings and interventions or shoulder the cost for tests, such as annual breast MRIs, or risk-reducing surgeries.

Importantly, most people with private insurance do not face the same obstacle. We must prioritize screening, early detection and prevention in all communities and age groups—and focus on policies that reduce barriers for vulnerable populations.

Slated to be introduced in April or May, FORCE is spearheading the Reducing Hereditary Cancer ActThis legislation will modify the Medicare statutes to remedy the issues with coverage of potentially life-saving genetic testing, screening and risk-reducing interventions. As recommended by National Comprehensive Network (NCCN) guidelines, it will enable coverage of:

  • Genetic testing for inherited mutations associated with increased risk of cancer for Medicare beneficiaries with a family history of a hereditary cancer gene mutation or a personal or family history suspicious for hereditary cancer

For Medicare beneficiaries who have an inherited genetic mutation causing a moderate to significant increased risk of cancer, the law will enable coverage of NCCN-recommended:

  • Increased cancer screenings (e.g. breast MRI, upper endoscopy)
  • Risk-reducing surgeries (e.g. removal of ovaries and fallopian tubes)

Stay tuned for more information and an opportunity to ask your elected representatives to support this important legislation!

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.