1. N orthwest P ortland A rea I ndian H ealth B oard Indian Leadership for Indian Health Tribal Cancer Control Education Eric Vinson Northwest Tribal Comprehensive Cancer Program May 29, 2013 Risky Business Training Supported by CDC Grant #1 U58 DP000786-4

2. Organizational Chart Northwest Portland Area Indian Health Board8/3/2015 2

3. July 1998 Northwest Portland Area Indian Health Board Delegates resolved to form the Northwest Tribal Cancer Coalition and the Northwest Tribal Cancer Control Project Northwest Tribal Cancer Control Project (NTCCP) Northwest Portland Area Indian Health Board8/3/2015 3

4. To envision and work toward cancer- free tribal communities by taking an integrated and coordinated approach to cancer control NTCCP Mission Northwest Portland Area Indian Health Board8/3/2015 4

5. An integrated and coordinated approach towards preventing and controlling cancer in tribal communities To reduce cancer incidence, mortality, and morbidity among American Indians and Alaskan Natives (AI/AN) in Northwest tribal communities NTCCP 20 Year Plan Northwest Portland Area Indian Health Board8/3/2015 5

6. Facilitate a process for Northwest tribes to promote cancer risk reduction strategies. Provide information on the most current early detection, screening and treatment practices through education and resource materials. Provide education regarding quality of life for cancer patients, their families and caregivers. Coordinate and collaborate with local and national cancer organizations and individuals. Improve Indian-specific cancer control data. NTCCP Goals Northwest Portland Area Indian Health Board8/3/2015 6

7. www.cnn.com/2014/05/19/health/pancreatic-liver- cancer-deaths/ “Lung cancer is already the top killer overall, but pancreatic and liver cancer will surpass the cancers currently considered the second and third leading causes of death, researchers say. Right now, second most dangerous is breast cancer for women and prostate cancer for men; and third is colorectal cancer for both men and women.” Article at: Projecting Cancer Incidence and Deaths to 2030: The Unexpected Burden of Thyroid, Liver, and Pancreas Cancers in the United States, Lola Rahib, Benjamin D. Smith, Rhonda Aizenberg, Allison B. Rosenzweig, Julie M. Fleshman, and Lynn M. Matrisian, Cancer Res Published OnlineFirst May 19, 2014; doi:10.1158/0008-5472.CAN-14-0155 Current news – May 19, 2014

8. News: Projected Change Incidence

9. News: Projected Change Mortality

10. Cancer in the NW AI/AN Northwest Portland Area Indian Health Board. Cancer Among Northwest American Indians and Alaska Natives. Portland, OR: Northwest Tribal Epidemiology Center, 2011. #7 #8

11. Cancer Morality #3 #7

12. From: www.cancer.org/cancer/livercancer/detailedguide/liver- cancer-what-is-liver-cancer A cancer that starts in the liver is called primary liver cancer. There is more than one kind of primary liver cancer. Hepatocellular carcinoma (HCC) This is the most common form of liver cancer in adults. About 4 of 5 cancers that start in the liver are this type. Liver Cancer Northwest Portland Area Indian Health Board8/3/2015 12

13. Liver cancer incidence, 2001- 2005 Northwest Portland Area Indian Health Board8/3/2015 13 nRate per 100,000 (95% CI) AI/AN518.2 (5.9, 11.3)* AI/AN Male319.7 (6.1, 15.7)* AI/AN Female207.0 (4.1, 11.3)* NHW1,8313.6 (3.4, 3.8) NHW Male1,3043.4 (5.2, 5.8) NHW Female5271.9 (1.8, 2.1) * AI/AN rate is significantly higher than corresponding NHW rate Northwest Portland Area Indian Health Board Northwest Tribal Registry Project, 2009

14. Hepatitis B and C Chronic Infections Increased risk for people with both hepatitis B and C. The longer the hepatitis infection lasts (especially hepatitis C), the greater the risk. Cirrhosis A disease in which healthy liver tissue is replaced by scar tissue. Chronic alcoholism and chronic hepatitis C are the most common causes of cirrhosis. Aflatoxin Increased risk by eating foods that contain aflatoxin (poison from a fungus that can grow on foods, such as grains and nuts, that have not been stored properly). Liver Cancer Risk Factors From: www.cancer.gov/cancertopics/pdq/prevention/hepatocellular/Patient/page3

15. Hepatitis B vaccine Preventing hepatitis B infection has been shown to lower the risk of liver cancer in children. Diet In a study of patients with chronic hepatitis C, those who were treated to lower their iron levels by having blood drawn and eating a low- iron diet were less likely to develop liver cancer than those who did not have this treatment. Liver Cancer Risk Reduction From: www.cancer.gov/cancertopics/pdq/prevention/hepatocellular/Patient/page3

16. New Hepatitis C Treatment Northwest Portland Area Indian Health Board8/3/2015 16

17. Hepatitis C Treatment Assistance Northwest Portland Area Indian Health Board8/3/2015 17

18. This is the most common form of liver cancer in adults. About 4 of 5 cancers that start in the liver are this type. Hepatocellular carcinoma (HCC) Northwest Portland Area Indian Health Board8/3/2015 18

19. Population GroupIncidence of HCC All HBV carriers with family history of HCCIncidence higher than those without family history All Cirrhotic Patients with chronic HBV3-8% per year Who gets screened for HCC? Selected AASLD Recommendations Chronic Hepatitis B (HBV) Population GroupIncidence of HCC Hepatitis C cirrhosis3-5% per year State 4 Primary biliary cirrhosis3-5% per year Genetic hemochromatosis and CirrhosisUnknown, but probably > 1.5%/year Alpha-1 antitrypsin deficiency and CirrhosisUnknown, but probably > 1.5%/year All other causes of Cirrhosis including alcoholUnknown Other Groups From: Jeremy Holden MD, The Oregon Clinic- Portland Gastroenterology, March 2013, Presentation and: www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/HCCUpdate2010.pdf

20. Current American Association for the Study of Liver Diseases (AASLD) guidelines recommend screening at risk patients with ultrasound alone at 6-month intervals Alpha-fetoprotein (AFP) is no longer used as a screening assay due to its poor sensitivity and specificity How to Screen for HCC From: Jeremy Holden MD, The Oregon Clinic- Portland Gastroenterology, March 2013, Presentation and: www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/HCCUpdate2010.pdf

21. Cancer Centers List of Cancer Centers available at:  datalinks.facs.org/cpm/CPMApprovedHospitals_Search.htm Where to get screened? Northwest Portland Area Indian Health Board8/3/2015 21

22. American Liver Foundation (ALF) - www.liverfoundation.org HELPLINE: The national ALF Helpline is available to answer questions about liver disease and liver wellness. This resource provides emotional support to patients at their point of crisis and information on local resources including physician referrals. To reach our Helpline, call 1-800-GO-LIVER (1-800-465-4837). SUPPORT GROUPS: Support programs assist patients who have a diagnosed liver disease, provide education and information on resources in their areas, and offer emotional support to them and their family members and caregivers. Locate a support group near you. SUPPORT GUIDES: Information on clinical trials and financial resources. More guides coming soon. National Cancer Institute: www.cancer.gov/cancertopics/types/liver And Cancer Information Service: www.cancer.gov/aboutnci/cis/page3 800-422-6237 Liver Cancer Resources

23. From: www.cancer.gov/cancertopics/pdq/treatment/pancreatic/Patient Pancreatic cancer is a disease in which malignant (cancer) cells form in the tissues of the pancreas. Pancreatic Cancer Northwest Portland Area Indian Health Board8/3/2015 23 The pancreas is a gland about 6 inches long that is shaped like a thin pear lying on its side. The wider end of the pancreas is called the head, the middle section is called the body, and the narrow end is called the tail. The pancreas lies between the stomach and the spine.

24. Smoking: Smoking tobacco is the most important risk factor for pancreatic cancer. People who smoke tobacco are more likely than nonsmokers to develop this disease. Heavy smokers are most at risk. Diabetes: People with diabetes are more likely than other people to develop pancreatic cancer. Family history: Having a mother, father, sister, or brother with pancreatic cancer increases the risk of developing the disease. Inflammation of the pancreas: Pancreatitis is a painful inflammation of the pancreas. Having pancreatitis for a long time may increase the risk of pancreatic cancer. Obesity: People who are overweight or obese are slightly more likely than other people to develop pancreatic cancer. Pancreatic Cancer- Risk Factors From: www.cancer.gov/cancertopics/wyntk/pancreas/page4

25. Early cancer of the pancreas often doesn’t cause symptoms. When the cancer grows larger, you may notice one or more of these common symptoms: Dark urine, pale stools, and yellow skin and eyes from jaundice Pain in the upper part of your belly Pain in the middle part of your back that doesn’t go away when you shift your position Nausea and vomiting Stools that float in the toilet Also, advanced cancer may cause these general symptoms: Weakness or feeling very tired Loss of appetite or feelings of fullness Weight loss for no known reason These symptoms may be caused by pancreatic cancer or by other health problems. People with these symptoms should tell their doctor so that problems can be diagnosed and treated as early as possible. Pancreatic Cancer Symptoms www.cancer.gov/cancertopics/wyntk/pancreas/page5

26. Pancreatic Cancer Action Network - 877-272-6226 www.pancan.org/section-facing-pancreatic-cancer/find-support-resources/ Connect with other survivors and caregivers In-person support and networking groups Telephone support groups Online support groups Educational events Survivor Stories National Cancer Institute: www.cancer.gov/cancertopics/types/pancreatic And Cancer Information Service: www.cancer.gov/aboutnci/cis/page3 800-422-6237 Pancreatic Cancer Resources Northwest Portland Area Indian Health Board8/3/2015 26

27. www.vitaltalk.org Has resources such as: http://vimeo.com/91963432http://vimeo.com/91963432 Created by: Anthony Back, MD- (Principal investigator) is Associate Professor of Medicine at the University of Washington in Seattle. He is Director of the Program in Cancer Communication at the Seattle Cancer Care Alliance (SCCA) and Fred Hutchinson Cancer Research Center (FHCRC). He is a board-certified medical oncologist whose primary research interests are doctor-patient communication and palliative care, and he practices gastrointestinal oncology. Dr. Back was a Faculty Scholar on the Project on Death in America and is a member of the ASCO Communication Task Force. He is the Principal Investigator the Oncotalk communication skills training program for Medical Oncology fellows (R25 CA 92055), and is an investigator on other NIH-funded observational studies of doctor-patient communication about hope and information (R01 PI J.R. Curtis) and prognosis in hematologic malignancies (R01 P.I. Stephanie Lee). Cancer Communication Northwest Portland Area Indian Health Board8/3/2015 27

28. Northwest Portland Area Indian Health Board8/3/2015 28

29. Native CIRCLE www.nativeamericanprograms.net/native-circle/ Print/DVD/CD - Topics Women’s Health – Breast, GYN, General Health and Wellness - Men and Women Colon, Stomach and Pancreatic Cancer Friend/Family Support and Caregiving and Cancer Men’s Health Smoking/Smoking Cessation Youth Diabetes Nutrition Health Education Materials Northwest Portland Area Indian Health Board8/3/2015 29

30. Includes more than 100 different rheumatic diseases and conditions, the most common of which is osteoarthritis. Other forms of arthritis that occur often are rheumatoid arthritis, lupus, fibromyalgia, and gout. Symptoms include pain, aching, stiffness, and swelling in or around the joints. Some forms of arthritis, such as rheumatoid arthritis and lupus, can affect multiple organs and cause widespread symptoms. Arthritis www.cdc.gov/chronicdisease/resources/publications/AAG/arthritis.htm

31. Sex: Women make up nearly 60% of arthritis cases. Age: Nearly 60% of the elderly population has arthritis. Risk increases with age. Genetic predisposition: Certain genes are known to be associated with a higher risk of some types of arthritis. Lyme disease: Approximately 60% of patients with untreated Lyme disease will develop Lyme arthritis. Obesity: Obesity is associated with gout in men16 and osteoarthritis of the knee, hip and hand in women. Joint injuries: Sports injuries, occupation-related injuries and repetitive use joint injuries can increase the risk of arthritis. Occupations such as farming, heavy industry, and occupations with repetitive motion are associated with arthritis. Arthritis Risk Factors Northwest Portland Area Indian Health Board8/3/2015 31

32. Arthritis across the USA Northwest Portland Area Indian Health Board8/3/2015 32

33. Arthritis in Oregon Northwest Portland Area Indian Health Board8/3/2015 33

34. The Arthritis Toolkit ($43.96) www.bullpub.com/catalog/the-arthritis-toolkit/ Walk With Ease ($11.95) www.arthritistoday.org/tools-and-resources/walk-with-ease-program/program.php Better Choices Better Health® for Arthritis (Free) Online only: www.arthritistoday.org/arthritis-self-management-program/ Fitness & Exercise for People with Arthritis ($?) Susan S. Levy slevy@mail.sdsu.edu Arthritis Resources for Individuals CDC Arthritis Program Interventions From: http://www.cdc.gov/arthritis/interventions/program_lists.htm

35. PROGRAM DEVELOPMENT Northwest Portland Area Indian Health Board8/3/2015 35

36. Cancer Control in Northwest Tribal Communities  Prevention  Screening & Early Detection  Treatment  Survivorship Rehabilitation Palliation Tribal Cancer Action Planning Northwest Portland Area Indian Health Board8/3/2015 36

37. Women’s Health Example Cancer Prevention through Education and Outreach Northwest Portland Area Indian Health Board8/3/2015 37 ObjectiveStrategyEvaluation  Increase the awareness of women aged 40 and older about the importance of annual mammograms.  Develop a community awareness campaign  Plan a “women’s health day” to distribute information about breast health  Plan an activity in connection with Breast Cancer Awareness Month (October)  Record activities of awareness campaign·  Record number of persons served at community health day  Measure awareness of importance of screening  Survey community for change in level of awareness of importance of screening

38. Planning to achieve a specific objective. Includes: Who will conduct each component of the activity When actions are to be carried out What resources need to be allocated What outcomes are anticipated What evaluation is needed to determine success Tribal Action Plans Northwest Portland Area Indian Health Board8/3/2015 38

39. Sample Tribal Action Plan Activity: Cancer Mural Walk Action StepsAccountabilityScheduleResources Feedback Mechanism PrimaryOthersStartCompleteDollars Time (hrs) Register to Use ParkJensen Thayer, WA BCCP May 7, 2007 $250.3 Get Tables for ParkONCSACS Wagon RentalJensen Thayer, WA BCCP $1950.3 T-ShirtsPat Ike/ONCSWA BCCP$6008 Cancer Pins/Tape MeasuresJensen Thayer, WA BCCP $500.60 JuiceEllen Doublerunner/ONCS Yakama Juice$1080.60 Mural Walk PostersEllen Doublerunner/ONCS Yakama Legends Casino $2008 Mural Walk MapsJensen Thayer, WA BCCP Mural Society.15 Cancer LiteratureYakama NavigatorACS.30 Total$1,18818.25Sign-In Sheets

40. Yakama ONCS Mural Walk/Ride 2005

41. Use partnerships to extend resources and delivery Partner with providers and other clinical staff Consult with other tribal programs Partner with state programs for services and training Use advisors to provide clinical guidance and test new ideas Successful Strategies for Developing Partnerships Northwest Portland Area Indian Health Board8/3/2015 41

42. Partners Foundations and Non-Profits American Indian and Alaska Native Organizations State and Federal Organizations

43. Northwest Tribal Comprehensive Cancer Program Kerri Lopez (Tolowa), Project Director Eric Vinson (Cherokee), Project Coordinator Tom Becker, MD, PhD, Medical Epidemiologist Improving Data & Enhancing Access - NW (IDEA-NW) Project Sujata Joshi, MPH, Project Director Phone: 503-416-3301 Email: klopez@npaihb.org Contact Information Northwest Portland Area Indian Health Board8/3/2015 43