This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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National Task Force Guideline Gaps Hinder Access to Genetic Testing

June 17, 2016

by Lisa Schlager

shutterstock_220449124Nearly a million Americans carry an inherited BRCA mutation associated with hereditary breast, ovarian cancer, and related cancers (HBOC) and it is estimated that 2.3 million women in the U.S. are at high risk for breast cancer due to family history. A number of other genetic mutations have also been linked to increased risk of breast and ovarian cancer.

Several organizations develop guidelines for assessing risk of a hereditary cancer syndrome. These include the U.S. Preventive Services Task Force (USPSTF), National Comprehensive Cancer Network (NCCN), American Congress of Obstetricians and Gynecologists (ACOG), and American Society of Clinical Oncology (ASCO). Recommendations from these organizations often don’t align, leading to confusion among health care providers, patients and payers.

The USPSTF is a government-supported, independent panel of experts that develops recommendations for select preventive health services.[i]  The USPSTF gives letter grades to the services it reviews. Under the Affordable Care Act (ACA), any preventive service receiving a USPSTF grade ‘A’ or ‘B’ must be covered with no copay or deductible by group health plans and entities offering group or individual health insurance. USPSTF guidelines are the only recommendations health insurers are required to follow under the ACA.[ii]

The 2013 USPSTF guidelines for BRCA-Related Cancer gave a grade ‘B’ to BRCA counseling and testing for women with a family or personal history of cancer. Initially, the Task Force maintained that this recommendation only applied to people who have never been diagnosed with cancer. In 2015, a clarification said that these guidelines also apply to women who have been diagnosed with breast, ovarian, or other cancers. Nevertheless, there are glaring gaps in the USPSTF guidelines that ultimately impede access to genetic counseling and testing for many people who need it.

  • Men are conspicuously absent from the USPSTF BRCA guidelines. Like women, men can inherit BRCA mutations and have a 50% chance of passing the mutation on to their children. Men with BRCA mutations face increased risk of prostate, and male breast and like women with mutations, they are also at increased risk for pancreatic cancer and melanoma. Genetic testing empowers them to make informed medical decisions, and to inform family members about their potential risk of carrying a mutation.
  • The USPSTF fails to address genetic testing for any other mutation except BRCA1 or BRCA2. With improvements in genetic testing and development of multigene panel testing, it is now easier to identify people with cancer-causing mutations in genes other than BRCA. National guidelines exist for the identification and management of some of the recently discovered genes such as PALB2, BRIP1, CHEK2, and other genes, and hereditary cancer syndromes such as Li-Fraumeni, Cowden, Peutz-Jeghers, Lynch and Hereditary Diffuse Gastric Syndromes—which are associated with moderate to high risk of cancers including breast/ovarian.Since ACA only mandates coverage of services recommended by the USPSTF, insurers have no obligation to cover these additional genetic tests; some payers claim that they are experimental or not medically necessary. As a result, many people have to fight to access genetic counseling and testing.

Identification of high-risk individuals is crucial, enabling them to initiate screening and preventive interventions that lower their risk—or detect cancer early. We’ve updated the Health Insurance Appeals section of our website, adding sample appeal letters and supporting materials, and also offer one-on-one Peer Navigation to assist people in getting recommended HBOC services.

We’ve launched a survey to gauge the landscape for insurance coverage of HBOC screening and preventive services with the goal of advocating for guideline and policy changes as needed.

Share Your Experiences with Insurance Coverage of Hereditary Cancer Services Survey

We want to hear from you if you have had difficulty getting insurance coverage of HBOC-related services OR if your insurance has covered everything OR if you don’t have insurance at all.


[i] Notably, this panel lacks anyone with expertise in genetics or hereditary cancer.

[ii] Medicaid and Medicare are exempt from this requirement. Medicaid guidelines for genetic counseling and testing vary by state and Medicare has its own guidelines surrounding genetic counseling and testing.


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