Privacy, Policy and Legal Issues > Current Policy Priority

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. Previous guidelines recommended that people at average risk of CRC start screening for the disease at age 50. The 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

9/29/2021 - Wrote in support of Paid Family and Medical Leave provisions included in the FY 2022 Budget Reconciliation Proposal and advocated for a universal paid leave program.

9/9/2021 - Joined 131 groups in a letter to Congress outlining recommendations to improve prescription drug affordability in Medicare Part D.

8/23/2021 - FORCE submitted feedback on the VALID Act, legislation that proposes sweeping reform of federal oversight of laboratory-developed tests and in vitro diagnostics.

More

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.