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Current Policy Priority

FORCE Requests Guidelines to Identify High-Risk, Lynch Syndrome Patients

Screening & Prevention

Comments on New Colorectal Cancer Screening Recommendations

February 3, 2021 – Today, FORCE asked the U.S. Preventive Services Task Force (USPSTF) to develop Lynch syndrome screening recommendations to help identify individuals at increased risk of hereditary colorectal (CRC) and related cancers; we encouraged partner cancer and healthcare professional organizations to join us in this effort. The USPSTF is a panel of experts in prevention and evidence-based medicine that reviews and develops guidelines on a broad range of preventive services. These recommendations are published to guide healthcare providers in determining appropriate screening and preventive care—and to inform insurance coverage of specific preventive services.

Affecting one in 300 Americans, Lynch syndrome is more common than BRCA mutations. The USPSTF developed BRCA mutation screening recommendations in 2013 (updated in 2019) but hasn't provided guidance on screening for other inherited genetic mutations associated with an increased risk of cancer. Colorectal cancer is the third most common cancer and the second leading cause of cancer death in the U.S. Earlier, more intensive screening with colonoscopy may reduce CRC incidence by over 65% among individuals with Lynch syndrome.

USPSTF recommendations will aid in the diagnosis of Lynch syndrome in people without cancer and allow for potentially life-saving cancer screening and prevention options. In addition, a favorable recommendation would facilitate insurance coverage of genetic testing for Lynch syndrome. The Affordable Care Act stipulates that any preventive service receiving a USPSTF rating of "A" or "B" must be covered by most health plans with no copay or cost-sharing for the patient. Consequently, these guidelines impact access to care for many Americans.

In late November, FORCE submitted comments on the USPSTF Draft Recommendation Statement for Colorectal Cancer Screening. Current guidelines recommend that people at average risk of CRC start screening for the disease at age 50. The proposed, updated guidelines endorse beginning CRC screening five years earlier—at age 45—for individuals at average risk of the disease.

FORCE agrees with the new recommendation but expressed concern that the Task Force does not provide sufficient guidance on identifying men and women who may be at increased risk of CRC due to hereditary/genetic factors. The USPSTF mentions that rates of colorectal cancer are higher in certain populations including, “Black adults and persons with a family history of colorectal cancer (even in the absence of any known inherited syndrome such as Lynch syndrome or familial adenomatous polyposis).” However, it does not provide information on how to identify people with Lynch or other CRC syndromes; and, it fails to acknowledge that endometrial, ovarian, pancreatic, urothelial and gastric cancers are associated with hereditary CRC syndromes.

We asked that the Task Force expand its recommendation by providing information to assist primary care providers in assessing potential hereditary CRC risk in their patients, and referring them for genetic counseling and testing if appropriate. This was followed by our more recent request that the USPSTF develop guidelines specifically aimed at screening and identifying people who may carry an inherited Lynch syndrome gene mutation. 

Read our full comments on the USPSTF Draft Recommendation Statement for Colorectal Cancer Screening.

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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Paying for Service
  • Blue Hope Financial Assistance will cover the cost of a screening test or a $300 one-time financial stipend to help cover screening-related expenses
  • ColonoscopyAssist provides cash stipends paid towards the cost of colonoscopy, free bowel preparation medicine and an interest-free payment plan for patients facing financial hardship.
  • If your insurance company denies coverage of recommended screenings, visit the Health Insurance Appeals section of our website for guidance and resources.
  • Patient Advocate Foundation provides case managers who help identify financial assistance programs and resources for those facing challenges.