Oregon Genetics Program: Enhancing Breast Cancer Genomic Practices

1. Oregon Genetics Program:Enhancing Breast Cancer Genomic Practices Summer Lee Cox, MPHAdvisory Committee on Breast Cancer in Young Women January 9, 2014

2. Oregon Genetics Program • Genetics manager • Oversees the Breast and Cervical Cancer Program (BCCP), WISEWOMAN, and Genetics • Center for Prevention & Health Promotion, Oregon Public Health Division, Oregon Health Authority • Genetics mission • To promote the health, well-being, and quality of life of Oregonians using up-to-date knowledge of genomics • Genetics funding • Enhancing Breast Cancer Genomic Practices Through Education, Surveillance, and Policy cooperative agreement with the CDC Division of Cancer Prevention and Control

3. Surveillance, Education & Policy Goals Surveillance Collect and utilize population level data to evaluate the use of evidence-based breast cancer genomics applications. PREVENTION & EARLY DETECTION Education Policy • Promote public policies that increase the utilization of genomic services for hereditary breast cancer recommended by the USPSTF and NCCN. • Increase use of clinical practices recommended in the USPSTF and NCCN on the use of BRCA testing.

4. Potentially Preventable BRCA related Breast and Ovarian Cancers, Oregon, 2005-2009 14,270 Breast Cancer Cases1 1,484 Ovarian Cancer Cases1 2% - 7% estimated BRCA related2 10% - 15% estimated BRCA related2 285-999 BRCA related Breast Cancer Cases 148-223 BRCA related Ovarian Cancer Cases 85% - 100% estimated risk reduction with prophylactic mastectomy3 69% - 100% estimated risk reduction with prophylactic oophorectomy3 102-223 Potential BRCA related Ovarian Cancers Prevented 243-999 PotentialBRCA related Breast Cancers Prevented Additional potential BRCA related breast and ovarian cancers prevented using chemoprevention, increased surveillance, or prophylactic oophorectomy to reduce breast cancer risk >345 - 1,222 Potential BRCA related Breast and Ovarian Cancers Prevented Data Source: 1. Oregon Cancer Statistics, National Program of Cancer Registries, 2005-2009 2. Bowen, et al. Public health action in genomics is now needed beyond newborn screening. Public Health Genomics 2012; 15(6):327-34 3. United States Preventive Services Task Force, Draft Recommendation Statement, Risk Assessment, Genetic Counseling, and Genetic Testing for BRCA related Cancer, 2013

5. BRCA Cancer Burden in Oregon Adults Data Source: Oregon Genetics Program Report: BRCA 1&2 and MMR Gene Mutations in the Oregon Population: Estimating Mutation Carriers and Referrals for Genetic Services. March, 2011. Not Published.

7. Healthcare Provider Genetics Confidence Data Source: Oregon Genetics Program, 2010 Healthcare Provider Survey, unpublished.

8. Oregon Approach - Surveillance

9. Oregon Surveillance Accomplishments • Analysis of Oregon ongoing BRFSS data • Analysis of Medicaid claims data, 2007 - 2011 • Evaluation of state health insurance plan policies • Identified 2,801 OSCaR cases appropriate for BRCA counseling (2009-2011) • Created BRCA surveillance system

10. BRCA Testing Study: two arms • First Arm: Collect a limited data set of patient level information on all patients who seek genetic counseling for HBOC • Second Arm: Survey patients who receive BRCA testing • FileMaker based Genetic Information System, “GenIS”

11. BRCA Testing Study: Follow-up SurveyWho first suggested taking the BRCA test?

12. BRCA Testing Study: Follow-up SurveyTest Results and Feelings

13. Oregon Approach – Education • Objectives • Increase provider understanding • Increase public knowledge • Populations • Public • Ashkenazi Jewish population, general population, fellow public health professionals, cancer survivors • Healthcare Providers • primary care • Health Insurance Companies

14. Oregon Education Accomplishments • Educating Ashkenazi Jewish population, general population, public health professionals & cancer survivors • Connecting with people through community presentations, train-the-trainer event, booths at community events, magazine article, family health history “challenge”, website, OSCaR letters, etc • Partnering with health insurance companies • Disseminating information about genetic conditions, genetic counseling & testing, evidence-based guidelines, and resources • Educating health professionals & others on evidence based guidelines & the appropriate use of genetic services • BCCP providers, CD Summary, OSCaR letters, journal article publications, collaboration with MI/GA/NCHPEG

15. Young Women & the Breast and Cervical Cancer Program (BCCP) • Breast cancer screening for low-income, uninsured and underinsured women >40 • Breast cancer diagnostic services for low-income, uninsured and underinsured women <40 if symptomatic • Benign breast conditions • common in young women • mimic cancer symptoms • Use of symptom characteristics to determine enrollment, family history only enters the picture AFTER a breast cancer symptoms is suspected • Improving provider knowledge & confidence

16. The ratio of young women in Oregon who were diagnosed with invasive breast cancer (ibc), compared to women 40+ diagnosed with ibc is 1:29 (2011 OSCaR Data) Data Source: Oregon Breast and Cervical Cancer Program Enrollment Data 2005 – 2013, unpublished

17. Surveillance  Education:Behavioral Risk Factor Surveillance System (BRFSS) Data • Oregon adult women with an increased risk family history of breast and ovarian cancer (9%, ~137,000 women): • 96% reported that their health care provider had specifically asked about family history of breast or ovarian cancer • 10% reported that they had received genetic counseling • 70% reported that they had never heard of BRCA genetic testing • Sent out a “CD Summary” to >10,000 interested parties • Oregon specific data, USPSTF recommendations, the importance of referral to a genetic specialist, and available resources Data Source: 2011 Oregon Behavior Risk Factor Surveillance System (BRFSS); CD Summary - BEYOND ANGELINA JOLIE: INHERITED BREAST AND OVARIAN CANCER, Vol. 62, No. 25, December 3, 2013.

18. Oregon State Cancer Registry (OSCaR) • 2009 – 20011 OSCaR data • 2,801 individuals with breast cancer at age 50 or younger, triple negative breast cancer, ovarian cancer, or male breast cancer • 634 different physicians reported these 2,801 cases • 619 physicians reported other breast cancer cases • Surveillance  Education • Targeted letters sent to patients and both provider groups • Patient Survey: over 300 and counting!

19. Oregon Approach - Policy • Objectives • Increase private health insurance coverage alignment with guidelines • Improve capacity of Oregon Medicaid to follow guidelines • Increase stakeholder knowledge about genetic counseling licensure • Collaborate to include genetic information in the Oregon Comprehensive Cancer Plan (OCCP) • Activities • Working with Medicaid Health Evidence Review Commission • Establishing partnerships with health insurance companies • Educating stakeholders on genetic counselor licensure • Promoting the use of evidence based guidelines by healthcare providers & health care systems • Establishing and maintaining partnerships to promote cancer genetic services

21. Health Insurance Policies: 2012 Survey Findings • 6/7 written BOC policies • All cover BRCA test for a person with & w/o cancer • All cover pre & post BRCA counseling • All use guidelines to determine coverage (screening, counseling & testing, and prophylactic measures) • All cover increased breast cancer screening, bilateral mastectomy, salpingo-oophorectomy, and hysterectomy for women with cancer • Coverage for ovarian cancer screening and chemoprophylaxis is inconsistent for women with cancer • Coverage for increased breast cancer screening, bilateral mastectomy, salpingo-oophorectomy, hysterectomy ovarian cancer screening, and chemoprophylaxis is inconsistent for women without cancer • 4/7 use NCCN guidelines; 1/7 use USPSTF recommendations

22. Health Insurance Policies:Surveillance  Education & Policy • Current Activities • Survey report and memo highlighting specific findings about each company to medical director • Individual meetings (in process of being set-up) with medical director and policy staff • Share informational packet about HBOC, evidence-based guidelines, and resources • Review 2014 policies • Possible Next Steps • Meeting with insurance commissioner • Participation in local/regional health insurance meetings

23. Lessons Learned • Surveillance  Education & Policy Surveillance • Measure to achieve • Starting surveillance • Education for the spectrum of stakeholders • Public, Providers, Insurers, Policy Makers, and others • Collaboration & Partnerships • Finding the wheels • Leveraging resources • In state & nationally

24. Oregon Genetics Programhttp://www.healthoregon.org/genetics • Kristin Kane, MSWBCCP/WW/GEN Program Managerkristin.a.kane@state.or.us • Alicia Parkman, MAGenetics Epidemiologistalicia.a.parkman@state.or.us • Karen Kovak, MS, CGCGenetics Clinical Consultantkovakk@ohsu.edu • Rani George, MPHGenetics Program Analystrani.m.george@state.or.us • Summer Lee Cox, MPHGenetics Program Coordinatorsummer.l.cox@state.or.us971-673-0273