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Review some of FORCE's current legislative and regulatory policy priorities that impact the hereditary cancer community.

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Current Policy Priority

Reducing Hereditary Cancer Act

Insurance Coverage & Barriers

Expand Medicare beneficiary access to genetic counseling, testing, cancer screening & prevention

FORCE has played a key role in driving the Reducing Hereditary Cancer Act (H.R.1526/S.765). Introduced in the U.S. House and Senate on March 9, this bipartisan legislation that aims to modify the Medicare statutes to enable coverage of potentially life-saving genetic counseling, testing, screening and risk-reducing interventions. The bill co-leads sent out a press release to coincide with the introduction and we sent a letter to congressional leadership—endorsed by over 110 medical institutions, patient advocacy and healthcare professional organizations.

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 guideline-recommended screenings and risk-reduction measures needed by individuals at increased 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 learns they have one of these mutations (a previvor), many medically necessary cancer screenings or risk-reducing surgeries are not covered by Medicare.

With the availability of low-cost genetic testing, a growing number of Medicare beneficiaries learn that they have an inherited genetic mutation that significantly increases their risk of cancer but they aren’t able to access the health services they need to prevent or detect cancer earlier, when it is easier and less expensive to treat. As a result, they face a dilemma: forgo the expert-recommended screenings and interventions or shoulder the cost of tests such as annual breast MRIs, or risk-reducing surgery such as hysterectomy.

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.

As recommended by National Comprehensive Cancer Network (NCCN) or similar medical guidelines, it will enable coverage of genetic counseling and testing for Medicare beneficiaries with a:

  • Family history of a hereditary cancer gene mutation, or
  • 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)

See below for additional information and resources related to this important legislation!

We would like to thank the bill co-leaders for their commitment and support.

U.S. House of Representatives - Debbie Wasserman Schultz (D-FL), Mariannette Miller-Meeks (R-IA), Elissa Slotkin (D-MI), Larry Bucshon (R-IN)

U.S. Senate - Lisa Murkowski (R-AK) and Ben Cardin (D-MD)

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News Briefs

4/3/2024 - Submitted comments to Senator Cassidy and the HELP Committee in response to an RFI regarding oversight of clinical diagnostic tests, known as in vitro diagnostics (IVDs) and laboratory-developed tests (LDTs).

3/15/2024 - Joined the Coalition to Increase Access to Cancer Care (CIACC) in comments to House leadership on efforts to strengthen the Employee Retirement Income Security Act (ERISA) and emphasize the need to pass the Cancer Drug Parity Act.

3/1/2024 - Provided feedback to CMS on the Medicare Advantage Advanced Notice and accompanying Part D Redesign Program provisions aimed at reducing and managing beneficiary out-of-pocket costs in the Medicare Part D program.

2/29/2024 - Wrote sponsors to endorse the BENEFIT Act, which would require the FDA to include in the benefit-risk assessment framework of a new drug application how patient experience data was considered in the review process.


Key Facts about Hereditary Cancer
Key Facts about Hereditary Cancer

  • Inherited genetic mutations (BRCA, ATM, CHEK2, PALB2, Lynch syndrome, etc.) are associated with an increased risk for a number of malignancies, including breast, colorectal, prostate, pancreatic, ovarian, stomach, and endometrial cancers.
  • Up to 10% of all cancers are due to a cancer-related genetic mutation; that number is significantly higher for certain cancers like ovarian, where nearly 25% of cases are due to an inherited mutation.
  • The more prevalent cancer-related genetic mutations are found in approximately one in every 300 Americans, with certain populations and ethnicities having higher rates.