1. VIRGINIA BIOBANKS - ADVOCATE PERSPECTIVE Vicky Carr, M.Ed., PMP Virginia Breast Cancer Foundation

2. 40 Virginia residents will die from cancer today. 1 American Cancer Society. Cancer Facts and Figures 2012. 2

3. REPRESENTATIVE PERSPECTIVE BIOBANK & REGISTRY BOOTCAMP, Genetic Alliance  TCGA WEBSITE CHCHD-TCGA DOCUMENTS TO:  Fellow Peer Counselors, including minority representatives  Fellow ProjectLEAD grads, including minority representatives  Genetic Alliance BioBank - Director  Inflammatory Breast Cancer Research Foundation BioBank – Executive Director  Komen Tissue Bank - Consumer Advocate on Scientific Advisory Committee  Dr. Susan Love Research Foundation– Executive Director and Army of Women Project Manager  National Breast Cancer Coalition  Virginia Breast Cancer Coalition  Breast Cancer Researcher @ Virginia Tech 3

4. OVERVIEW - VA BIOBANKS – ADVOCATE PERSPECTIVE SHARED GOALS ADVOCATE CONCERNS WHAT CAN BE DONE TO EASE CONCERNS HOW ADVOCATES CAN BE KEY PARTNERS HOW TO GET MORE DIVERSE TISSUE SAMPLES 4

5. SHARED GOALS  WE WANT PROGRESS AND TISSUE IS THE KEY TO PROGRESS CHALLENGES OPPORTUNITIES 5

6. ADVOCATE CONCERNS INFORMED CONSENT TRUST GETTING ENOUGH SAMPLES TO RESEARCHERS RESEARCH BANG FOR BUCK 6

7. ADVOCATE CONCERNS  INFORMED CONSENT REAL CONCERNS (i.e., risk of denial of medical coverage) KOMEN CONSENT– 8,000 Women Signed! ONLY NEED SMALL % TO SIGN WRITTEN AT 8 th GRADE READING LEVEL OR BELOW UNDERSERVED CONSIDERATIONS BOTTOM LINE: LET MEN & WOMEN DECIDE 7

8. ADVOCATE CONCERNS  TRUST WE TRUST: ADVOCATE-OWNED BIOBANKS TRUST ISSUES: GOVERNMENT-OWNED BIOBANKS ADVOCATES INVOLVED AS KEY PARTNERS HELPS ESTABLISH TRUST (NCI: ASK US!) 8

9. ADVOCATE CONCERNS  GETTING ENOUGH SAMPLES TO RESEARCHERS  RESEARCH BANG FOR BUCK  WHAT’S YOUR PLAN TO REACH UNDERSERVED?  ALTERNATIVE COLLECTION FOR NEOADJUVANT-TREATED TUMORS 9

10. TO EASE CONCERNS “S”TORE EXTRAS STORE ADDITIONAL RESIDUAL TISSUE  WHY GO TO $$ TO COLLECT…YET NOT MAKE TISSUE SAMPLES AVAILABLE TO RESEARCHERS WHO DESPERATELY NEED? “T”ARGET COLLECTION – not what can get…but what need TARGETED RECRUITMENT: GAP ANALYSIS “M”EASURE RESULTS ADD DISEASE-SPECIFIC MORTALITY RATES TO STATE CANCER PLAN 10

11. TO EASE CONCERNS “E”MPLOY ADVOCATES APPOINT ADVOCATES AS KEY ADVISORS ON ALL CANCER- SPECIFIC STEERING COMMITTEES & SCIENTIFIC REVIEW COMMITTEES ADVOCATES CAN FACILITATE COLLABORATION PATIENTS AS DRIVING FORCE TO PUSH TO DONATE TISSUE 11

12. HOW TO GET MORE DIVERSE TISSUE SAMPLES ASK PATIENTS!  PATIENTS/ADVOCATES CAN BE DRIVING FORCE TO PUSH TO DONATE THEIR TISSUE  THIS INITIATIVE NEEDS TO MORE CLEARLY SHOW PATIENT BENEFIT  DOCTORS HAVE TO ASK PATIENTS  EDUCATE COMMUNITY ON IMPORTANCE OF TISSUE DONATION 12

13. SUMMARY ADVOCATES WANT PROGRESS AND TISSUE IS KEY ADVOCATE CONCERNS WAYS TO EASE CONCERNS TAKEAWAY: USE ADVOCATES TO SPEED RESEARCH & HELP RESEARCHERS GET TISSUE SAMPLES 13

14. THANK YOU Carla Finkielstein, Ph.D., Associate Professor, Integrated Cellular Responses Lab, Virginia Polytechnic Institute Liz Horn, Ph.D., Director, Genetic Alliance Registry and BioBank Ginny Mason, Executive Director, Inflammatory Breast Cancer FNDN Chris Norton, Board Member, National Breast Cancer Coalition Connie Rufenbarger, Scientific Advisory Committee, Komen Tissue Bank at IU Simon Cancer Center Naz Sykes, Executive Director, Dr Susan Love Research FNDN Leah Wilcox, Army of Women Research Project Manager 14

15. REFERENCES 1 American Cancer Society. Cancer Facts & Figures 2012. Atlanta: American Cancer Society; 2012. (http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc- 031941.pdf accessed 9/9/12)http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc- 031941.pdf 2 Video of Dr. Bert Vogelstein talk, “Cancer Genomics and their Implications for Research and Patients”, The American Association for Cancer Research, April 2, 2012, Chicago, IL. http://webcast.aacr.org/console/player/17840?mediaType=audio http://webcast.aacr.org/console/player/17840?mediaType=audio 3 Genetic Alliance Biobank & Registry BioBank tip archive, available by subscription, info@geneticalliance.org). 15