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

Current Policy Priority

Development of USPSTF of Lynch Syndrome Screening Guidelines Halted

Screening & Prevention

August 30, 2023 – Today, the U.S. Preventive Services Task Force (USPSTF) notified FORCE and other stakeholders that the recommendations on the Prevention of Lynch Syndrome-Related Cancer in adults “cannot move directly into the final research plan stage and evidence review at this time.” While not directly stated, it appears that the Task Force is under-resourced and doesn’t currently have the capacity to develop the guidelines.


Background

January 28, 2021 – Today, the U.S. Preventive Services Task Force (USPSTF) announced plans to develop guidelines for the "Prevention of Lynch Syndrome-Related Cancer." FORCE spearheaded this effort to raise awareness about hereditary colorectal and related cancers, help identify high-risk individuals—and to facilitate coverage of appropriate genetic testing with no cost-sharing under the Affordable Care Act (ACA).

Nearly two years ago, FORCE spearheaded a campaign to nominate Lynch Syndrome as a topic to be addressed by the USPSTF. On December 17, 2021, FORCE was notified that the U.S. Preventive Services Task Force (USPSTF) had agreed to add “Lynch Syndrome-Related Cancers: Risk Assessment, Genetic Counseling, and Genetic Testing” to its list of preventive services under consideration. This is a victory for the hereditary cancer community and individuals at increased risk of colorectal and related cancers because it will raise awareness of Lynch and similar cancer syndromes, identify more people at increased risk of these cancers, and ensure health insurance coverage of genetic testing for these predispositions with no cost-sharing for patients who qualify. 

In February 2021, FORCE spearheaded an effort to ask the USPSTF to develop Lynch syndrome screening recommendations to help identify individuals at increased risk of hereditary colorectal (CRC) and related cancers. 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 primary care 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 patient copay or cost-sharing. Consequently, these guidelines impact access to care for many Americans.

In November 2021, 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 without an increased risk of the disease.

FORCE agrees with the new recommendation for the general population but expressed concern that the Task Force does not provide sufficient guidance on identifying people 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.

The Task Force did not 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 motivated us to ask the USPSTF to develop guidelines specifically aimed at screening and identifying people who may carry an inherited Lynch syndrome gene mutation. The development of new Task Force recommendations is an intensive process that can take two or more years. We will keep the community updated as the process progresses.

Read our comments on the USPSTF draft Recommendation Statement for Colorectal Cancer Screening and the Lynch Syndrome-Related Cancers: Risk Assessment, Genetic Counseling, and Genetic Testing” nomination.

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News Briefs

1/28/2024 - Sent comments to the FL Senate Banking and Insurance Committee in support of SB 932, legislation aiming to expand coverage of high-risk, supplemental breast screenings and diagnostic imaging with no patient cost-sharing.

1/16/2024 - Joined stakeholders in a letter to President Biden asking that he recognize March as National Colorectal Cancer Awareness Month and light the White House blue to honor those we have lost and those fighting this disease.

12/7/2023 - Asked HHS to issue guidance clarifying that “surveillance colonoscopy” after a colonoscopy that required polyp removal is part of screening and that patients should not face out-of-pocket costs for the follow-up procedure.

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Paying for Care
Paying for Care

  • 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.