ACBCYW HIGH RISK Ad Hoc WORKGROUP REPORT August 2014

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

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

ACTIONS TO DATE 2010 – 2012 – Delineated Workgroup charge; began research on breast cancer risk in young women related to charge – 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 – Workgroup recommendations incorporated into letter from ACBCYW to Secretary Kathleen Sebelius of the US Department of Health and Human Services.

ACTIONS TO DATE Workgroup convened on February 12, 2014 and June 6, 2014 Workgroup has been discussing suggested directions for the Committee and further research in the area of risk – expanding from exclusive focus on high risk to messaging regarding average risk in young women

WORKGROUP DISCUSSION 1.Suggested directions for future work 2.Possible modification of High Risk Ad Hoc Workgroup charge 2. Launch of Know:BRCA campaign

SUGGESTED DIRECTIONS 1.Develop an understanding of “average risk” and “higher risk”, as compared to “high risk” 2.Develop messaging to translate “average risk” and “higher risk” to young women 3.Develop messaging to young women regarding risk reduction based on cancer prevention data

Current Charge: 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

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

KNOW:BRCA Recommend full Committee discussion about how we can move this campaign forward:  Leveraging media attention in light of Breast Cancer Awareness Month and Ovarian Cancer Awareness Month  Developing talking points for Committee members contacted by the media in the upcoming months

NEXT STEPS 1.Feedback on “Suggested Directions” and avoiding overlap of work being done by the General Population Ad Hoc Workgroup 2.Discussion: Modification of High Risk Ad Hoc Workgroup charge 2. Discussion: Know:BRCA campaign