FORCE advocates for families facing hereditary cancer in areas such as access to care, research funding, insurance and privacy.

Current Policy Priority

Reducing Hereditary Cancer Act of 2021 - H.R. 4110

Genetic Counseling & Testing

Click the below link for the May 26th
Community/Stakeholder Advocacy Briefing recording

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, guidelines-recommended 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.

Introduced in the House of Representatives on June 23 (Senate introduction forthcoming), FORCE is spearheading the Reducing Hereditary Cancer ActThis legislation aims to 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 Cancer Network (NCCN) or similar medical 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 an increased risk of cancer, the law will enable coverage of guideline-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

7/1/2021 - Effective today, North Carolina's Medicaid program will cover genetic counseling and BRCA mutation testing for those who have "higher than average risk" for the development of certain cancers based on specific personal and/or family history of the disease.

6/30/2021 - FORCE added its support to a letter sent to Senate HELP Committee leadership urging the prioritization of diagnostics reform on behalf of the In-vitro Diagnostics (IVD) Reform Coalition and the communities it represents.

5/21/2021 - Joined the Defense Health Research Consortium in a letter asking House and Senate leadership to continue support for the defense health research programs funded through the Department of Defense (DoD) Congressionally Directed Medical Research Programs (CDMRP). 

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