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High-risk Breast Surveillance Resource Gaps

High-risk women have unmet needs for resources, including:

  • Inaccurate breast cancer risk assessment: Guidelines for breast cancer screening of high-risk women are different than those for averagerisk women. Too often, however, women who want to know their risk for breast cancer are not referred to experts with advanced genetics training who can best assess an individual’s risk.
  • Incorrect information about screening and risk-management options: Many high-risk women are told that they are too young for breast screening. Others are unaware of recommendations for annual breast MRI and mammogram. Few people are informed about medications or research studies available to manage their high risk.
  • Inadequate insurance coverage for breast screening: Many women lack insurance coverage or have high out-of-pocket costs for screening. Despite published guidelines, many women must appeal insurance company denials for breast screening.
  • Insufficient support for and public awareness of screening: Women relate feeling anxious, isolated, or dismissed when seeking peer support for surveillance appointments. Media coverage of high-risk women frequently focuses on prophylactic surgery, ignoring other risk-management options and leaving gaps in public awareness.

FORCE is conducting a survey to document the extent of these gaps and measure preferences for resources and support. Thanks to a grant from Lilly, we are developing materials for high-risk women and health care providers about the importance of breast cancer screening and prevention. Visit facingourrisk.org/surveys for more information or to take our survey.

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