FORCE advocates for families facing hereditary breast and ovarian cancer in areas such as access to care, research funding, insurance, and privacy.

Advocacy > Issues > Short-Sighted Genetic Counseling and Testing Guidelines Challenged


FORCE is supporting legislation (H.R. 4078) to reauthorize and increase funding for the Breast Cancer Education and Awareness Requires Learning Young Act (EARLY) Act.

We played a lead role in drafting coalition comments on the FDA's proposed mammography guideline updates.

FORCE recommendations regarding genomics were accepted and will be integrated into the Healthy People 2030 objectives.

Today, the FDA announced a new pilot program called Project Facilitate to assist oncologists in requesting access to unapproved therapies for cancer patients. 

We signed onto coalition letters to the House and Senate regarding FY20 funding for the Defense Health Research programs. 

Short-Sighted Genetic Counseling and Testing Guidelines Challenged

Genetic Testing & Counseling


March 2019 - Recommendations published by the U.S. Preventive Services Task Force (USPSTF) are used to determine which preventive services are available at no cost sharing under the Affordable Care Act (ACA). Last published in 2013, the Task Force recently invited public comments on its new draft guidelines for "BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing."  The draft guidelines fall short of adequately representing the wide-ranging needs of the hereditary cancer community. FORCE, joined by over a dozen other patient advocacy organizations, submitted a comprehensive response advocating for more current and inclusive recommendations.

The U.S. Preventive Services Task Force is an independent panel of national experts that makes evidence-based recommendations about preventive health services such as screenings, counseling services, and preventive medications. The Task Force publishes guidelines on screenings such as breast mammograms, colonoscopies, and PSA testing for prostate cancer. Any screening receiving a grade "A" or "B" is covered as an essential preventive service under the Affordable Care Act (ACA). These services must be provided at no cost under the ACA. Health insurers often look to the USPSTF to determine what preventive services will be covered. As such, gaps in the Task Force guidelines may impact access to health care. For more information on this, see our article entitled, "High-Risk Individuals  Often Struggle to Get Insurance Coverage of Health Services."

The new draft guidelines don't include men or cancer survivors currently in treatment. The recommendations also fail to consider multigene panel testing, now standard-of-care in cancer genetic testing. Rather than give letter grades to the preventive screenings and interventions needed after a person is found the carry a mutation, the Task Force simply outlines the interventions. This leads to gaps in coverage for genetic testing and related services such as breast screening MRIs and risk-reducing surgeries. 

Comments on the draft guidelines were accepted through March 18, 2019, 8:00 PM EST. FORCE, other cancer advocacy groups, and health professional organizations carefully evaluated the draft recommendations and submitted written remarks. We will update the community once the guidelines and finalized--which could take up to a year.

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