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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Cancer Screening Guideline Loopholes and Confusion Jeopardize Coverage of Services: Part II of Access to Care Series

July 5, 2016

by Lisa Schlager

shutterstock_143902894Over 2 million women in the U.S. are at high risk for breast cancer due to family history. Additionally, nearly a million Americans carry an inherited BRCA mutation and a number of other genetic mutations have also been linked to increased risk of breast, ovarian and other cancers.

Several organizations develop cancer screening and prevention guidelines but the United States Preventive Services Task Force (USPSTF) guidelines are the only recommendations health insurers are required by law to follow.[i] The Affordable Care Act (ACA) is a national law that mandates that 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.[ii]

Major gaps in the USPSTF guidelines result in misunderstanding and barriers to care. Our last blog on access to genetic testing outlined the gaps in USPSTF coverage of genetic testing. In its 2013 guidelines for BRCA-Related Cancer the USPSTF gave BRCA counseling and testing for women with a family or personal medical history of cancer a grade ‘B.’ While acknowledging that appropriate “Interventions in women who are BRCA mutation carriers include earlier, more frequent, or intensive cancer screening; risk-reducing medications (e.g., tamoxifen or raloxifene); and risk-reducing surgery (e.g., mastectomy or salpingo-oophorectomy)” the USPSTF failed to assign letter grades to most of these interventions. This creates a situation in which genetic testing must be covered by health insurers but the related early-detection and risk-reducing services may not be covered. As a result, some insurers claim that these services aren’t medically necessary and refuse to pay for them.

Gaps in Guidelines Affect Patient Access

The value of identifying people at high-risk of cancer lies in their ability to access screening and preventive services to lower cancer risk, or detect it early. Organizations such as the National Comprehensive Cancer Network (NCCN)[iii], the American Cancer Society, and professional societies recognize that those at increased risk of cancer need more intensive screening and preventive regimens and create guidelines specifically for this population. For instance, mammograms are recommended for average risk women starting at age 40. NCCN guidelines indicate that women at high-risk for breast cancer should start mammograms or breast MRIs at the age of 25. Visit the Risk Management section FORCE’s website for more information.

shutterstock_104400305While NCCN guidelines are generally recognized by experts as the standard of care for high-risk patients, only the USPSTF recommendations are specifically required by law to be covered under the Affordable Care Act. The USPSTF doesn’t give letter grades to screening and preventive services for people with BRCA mutations; it also doesn’t address genetic testing or risk-management for men or people with mutations in genes other than BRCA. As a result, many people have to fight for access to care. We hear from these people every day.

FORCE is proud to represent the unique needs of the hereditary cancer community—women, men, survivors, previvors, and people of all ages, races, and ethnicities. We will continue our efforts to ensure that all high-risk people have access to the screening and preventive services needed to manage their risk.

To help those facing insurance coverage challenges we recently updated the Health Insurance Appeals section of our website, adding sample appeal letters and supporting documentation for a variety of services. Our free Helpline and Peer Navigation Program offer one-on-one support, resources, and guidance for people affected by hereditary cancer.

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] Currently, the Task Force lacks anyone with expertise in hereditary cancers.

[ii] It’s important to note that Medicaid and Medicare are exempt from the USPSTF guidelines. Medicaid services vary by state and Medicare has its own guidelines surrounding screening and prevention.

[iii] The National Comprehensive Cancer Network (NCCN) is a not-for-profit alliance of 27 leading cancer centers devoted to patient care, research, and education.

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