Policy Archive Successful Effort

Clarification Includes Survivors in BRCA Screening Guidelines

Genetic Counseling & Testing

Guidelines published by the U.S. Preventive Services Task Force (USPSTF) are used to determine which patients are eligible for BRCA genetic counseling and testing with no cost-sharing under the Affordable Care Act (ACA). The USPSTF BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing recommendations published in 2013:

  • left questions about whether insurers must cover genetic counseling as well as genetic testing, and
  • were initially interpreted to apply only to women who have not been diagnosed with cancer, with a family cancer history consistent with the USPSTF criteria. 

In May 2015, the Center for Consumer Information and Insurance Oversight (CCIIO), published an FAQ document which declared that genetic counseling as well as BRCA testing must be covered.  The guidance also shared that there was confusion "as to whether the recommendation applies to women who have had a prior non-BRCA-related breast cancer or ovarian cancer diagnosis, even if those women are currently asymptomatic and cancer-free."

In October 2015, the United States Department of Labor issued a clarification indicating that the USPSTF BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing guidelines ALSO apply to women who have "previously been diagnosed with cancer, as long as she is not currently symptomatic of or receiving active treatment for breast, ovarian, tubal, or peritoneal cancer."

The Department of Health and Human Services Health Resources and Services Administration (HRSA) recognized that access to certain screening and preventive services such as breast MRI for high-risk women are being hindered under current policies and USPSTF guidelines. In response, HRSA published a funding opportunity announcement (FOA) in November 2015 to address unmet needs in Guidelines for Women's Preventive Services. This multiyear initiative launched in 2016. FORCE is weighing in and following the progress of this project closely to ensure that the needs of the high-risk and hereditary cancer communities are met.

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.

More