1. ACBCYW HIGH RISK Ad Hoc WORKGROUP REPORT March 2014

2. At the end of this lecture, you will be able to: WORKGROUP MEMBERS Dr. Otis Brawley Susan Brown Dr. Sue Friedman Kelly Hodges Maimah Karmo Ngina Lythcott Dr. Lisa Newman Morrisa Rice Rochelle Shoretz, Chair Dr. Marisa Weiss

3. To gather initial background information and to advise the Committee regarding: 1. Developing an understanding of what it means to be at “high risk” for breast cancer as it relates to young women. 2. Identifying potential evidence-based messages to be disseminated to this population. At the end of this lecture, you will be able to: WORKGROUP CHARGE

4. ACTIONS TO DATE 2010 – 2012 – Delineated Workgroup charge; began research on breast cancer risk in young women related to charge. 2012 – Submitted report to ACBCYW outlining the research conducted by the Workgroup, relevant findings, items for Committee consideration, and a draft recommendation for the Committee’s consideration. 2013 – Workgroup recommendations incorporated into letter from ACBCYW to Secretary Kathleen Sebelius of the US Department of Health and Human Services.

5. SUGGESTED DIRECTIONS Workgroup convened on February 12, 2014 to discuss future directions for research and focus in the area of high risk. Workgroup discussed suggested directions for ACBCYW and further Workgroup research in the area of risk – expanding from exclusive focus on high risk to messaging regarding average risk in young women.

6. SUGGESTED DIRECTIONS 1.Conduct further review of and develop response to USPSTF Guidelines: Risk Assessment, Genetic Counseling, and Genetic Testing for BRCA-Related Cancer in Women (December 2013). 2.Conduct national research on prevention messages in public health arena. 3.Research risk assessment for those who may develop triple negative breast cancer. 4.Develop messaging to young women at average risk or increased risk (as compared to high risk) of breast cancer.

7. SUGGESTED DIRECTIONS 5. Develop lay person guide to understanding individual risk. 6. Educate media partners about messaging and research studies. 7. Correlate knowledge with awareness. Presently, awareness of risk is high, but actual knowledge about risk is low.

8. SUGGESTED DIRECTIONS 8. Review national advertising campaigns to high/higher risk population, including: –Myriad Genetics ads –CDC cascade screening campaign –Genetic Alliance infographic –Materials addressing risk prepared by NPO’s represented on ACBCYW 9. Review and respond to data from updated follow-up on the Canadian mammography trial for women ages 40-49.

9. MATERIALS Materials submitted by members of the Workgroup for further consideration include: –Poster Presentation: “Evaluating the Opportunity and Need for Communicating Breast Cancer Risk Reduction Messages to US Women” (Dr. Marisa Weiss and breastcancer.org; San Antonio Breast Cancer Symposium 2013) –Brochure: “What Every Young Woman with Breast Cancer Should Know “ (FORCE) –Brochure: “Breast Cancer Screening for High Risk Women” (FORCE) –Educational Booklet: “Your Jewish Genes: Hereditary Breast Cancer and Ovarian Cancer” (Sharsheret) –Social Media Campaign: “Have the Talk” (Sharsheret)

10. NEXT STEPS 1.Committee to prioritize further risk-related research – both average and high risk. 2.Committee to adjust Workgroup charge(s) as necessary. 3.Workgroup to reconvene to conduct additional research and make additional recommendations to Committee.