Abstract IA10: Challenges in addressing cancer health disparities in Native American communities
Authors: Burhansstipanov Linda , Krebs Linda U. , Harjo Lisa D. 
Published: October 2015

Abstract
Brief Overview of Demographics and Risk Factors: There are more than 760 federally and state-recognized American Indians/Alaska Natives (AI/ANs) tribes in the US.1 Of those AI/ANs responding to the 2010 Census, 41% lived in the West and the majority (78%) lived in urban and rural areas or in states that do not have a federal Reservation.2 AI/ANs have daily behaviors and co-morbidities that increase their risks for cancer. They are more likely to be obese, use commercial tobacco, and have diabetes or high blood pressure. They also have long experienced lower health status in comparison with other US populations. AI/ANs born in 2011 have a lower life expectancy than all US populations (72.6 years vs. 77.8 years).2 Their poverty level is nearly twice that of the overall US population; only half as many having health insurance. When compared to other populations, AI/ANs are more likely to have a lower socioeconomic status and live in poverty, leading to less access to cancer prevention and screening services. Additionally, 20% of AI/ANs have not completed high school as opposed to only 8% of non-Hispanic Whites. Not completing high school has been associated with unhealthy and risk taking behaviors.3 The Indian Health Service (IHS) reported that cancer screening rates for AI/ANs were significantly lower in comparison to the overall US population with only 59% receiving cervical screening, 45% breast screening and 33% receiving colorectal screening, leading to increased risk of late diagnosis and decreased survival from cancer.2
Excerpts from “Native American Cancer Education for Survivors” (NACES): Native American Cancer Education for Survivors” (NACES) is the largest AI cancer survivorship database, education and support program in the US, with almost 900 survivors. NACES is a cancer education intervention designed to improve the Quality of Life (QOL) of cancer survivors by increasing knowledge and informed choice using innovative, tailored, web-based technology. The website includes a QOL survey, culturally appropriate and scientifically accurate content based on the Medicine Wheel (physical, mental-emotional, social and spiritual health), video excerpts from almost 90 AI survivors, sample questions to ask providers, and other interactive information. It is organized as a QOL Tree with information written at reading grade levels 5-7, and is based on AI survivors sharing their cancer-related stories throughout the education materials. Native Patient Navigators (NPNs) assist cancer survivors to effectively use the website and complete a QOL survey. This survey was adapted and culturally tailored from Ferrell's QOL survey initiated at the City of Hope. In 2013, 75 items, mostly NIH PROMIS® items, were added. As of September 2014, 890 AI cancer survivors completed the survey. Findings include: Most (n=710; 79.8%) are female, 46% have high school or less education, more than half (54.6%) are full-bloods, and almost half (47.6%) were diagnosed with cancer prior to age 50. About 1/3 (35.7%) travel 200 or more miles one way to access cancer care and because of rural road conditions and other geographic issues, almost half (48.1%) travel more than 2 hours one way to access such care. More than 1/3 (37.4%) had difficulties getting into cancer treatment. These data differ greatly from NCI published findings of older age at diagnosis, living within a reasonable distance from cancer care services and access to treatment.4 5
Affordable Care Act (ACA): IHS offers basic clinic services until there is a cancer diagnosis. Then patients are referred through Contract Health Services (CHS) out of the IHS system to private health providers. When there are not enough CHS funds available in a contract year, patients cannot be referred until the next year begins. The current system typically results in people returning to their home reservation for 3-6 months to re-establish “residency”, then they are placed on the CHS priority / waiting list to be referred elsewhere for cancer care. This means that AIs must return to the reservation to seek care. However, the ACA, should eliminate such obstacles to accessing timely cancer services.
Those AIs who have health insurance receive care in sites determined by their healthcare plans. Those without health insurance and not living near an IHS clinic access health care the same as others in poverty, often not receiving healthcare until an emergency. For many reasons, few receive health care at public institutions. Contrary to popular belief, AIs living in urban areas do not have easier access to healthcare services in comparison to Reservation-based AIs. While almost 2/3 of AIs live in urban areas, only 2% of the total IHS budget is allocated to urban AI clinics, affecting access to cancer screening and early detection programs. Those who seek public screening services often experience fragmented care due to lack of a primary care provider, delayed or lost results reporting or insufficient or delayed follow-up care of suspicious findings.
Because the ACA allows AIs the option for exemption from obtaining health insurance, many will rely solely on care through IHS. However, due to major reductions in the IHS budget, tribes and Indian organizations are referring AIs for private insurance through the ACA to assure that they receive healthcare. Because private health insurance is not the norm for AIs, many are unfamiliar with how to use it and are unclear how to access health services such as routine cancer screenings.
Access to Technology: In 2012, NACR and its collaborators (Muscogee (Creek) Nation, Rapid City Regional Hospital's Walking Forward Program, Intertribal Council of Michigan) had their Native Patient Navigators (NPNs) administer a short survey on access to and use of technology to AIs (n= 306). Two thirds of respondents were female, 64% were between 31 and 64 years of age and 68.9% had less than a college education. About 2/3 had positive responses to the use of cell phones, with 76% having a cell phone, 66.6% currently using text messaging and 74.8% willing to receive and respond to about 4-6 health-related texts per day. Many of the elders used Facebook to stay in contact with their grandchildren. Cell phone towers on Reservations are increasing; in 2014, 85% of Reservations have cell phone coverage. Although the majority of AIs now have cell phones, many do not know how to use common features.
The need for “cultural” Native Patient Navigators: AIs experience barriers to accessing health care due to socioeconomic and cultural issues as well as historical trauma, even when it is second and third generation.6 7 NPNs help patients understand healthcare information by translating it into terms that are more comfortable and easily understood. They know how to address historical issues unique to tribal members, varying communication patterns and spirituality practices that may impact contemporary medical practices. They provide support and referrals to education programs, resources and cancer screenings and improve and enhance AI patient outcomes through recognizing and integrating culture in overall healthcare.
References:
1 US Census Bureau, (2012). The American Indian and Alaska Native Population: 2010 (based on the 2010 Census Redistricting Data (Public Law 94-171) Summary File). In: Commerce USDo, editor. Washington, DC.
2 Indian Health Service DHHS. (2012). Indian Health Service. IHS Fact Sheets. In: http://www.ihs.gov/publicaffairs/ihsbrochure/disparities.asp.
3 DHHS, Centers for Disease Control and Prevention, Morbidity and Mortality Weekly Report, CDC Health Disparities and Inequalities Report—United States, 2013, Supplement, volume 62, number 3, November 22, 2013, page 9
4 Howlader N, Noone A, Krapcho M, Neyman N, Aminou R, Waldron W, et al. (eds). SEER Cancer Statistics Review, 1975–2009 (Vintage 2009 Populations), National Cancer Institute; Bethesda, MD, http://seer.cancer.gov/csr/1975_2009_pops09/, based on November 2011 SEER data submission, posted to the SEER web site, April 2012.
5 de Moor JS, Mariotto AB, Parry C, Alfano CM, Padgett L, Kent EE, Forsythe L, Scoppa S, Hachey M, and Rowland JH. Cancer Survivors in the United States: Prevalence across the Survivorship Trajectory and Implications for Care. Cancer Epidemiol Biomarkers Prev. 2013 Apr;22(4):561-70.
6 Harjo, Lisa, Burhansstipanov, Linda, Lindstrom, Denise, Rationale for “Cultural” Native Patient Navigators in Indian Country. Journal of Cancer Education. (online June 2014, in print summer 2014) Doi 10.1007/s13187-014-0684-0
7 Cutler M (n.d.) Multigenerational trauma: behavior patterns in cultures. Retrieved from http://edweb.boisestate.edu/instituteforthestudyofaddiction/pp/Historical_Trauma_and_Grief.ppt on July 2014
Citation Format: Linda Burhansstipanov, Linda U. Krebs, Lisa D. Harjo. Challenges in addressing cancer health disparities in Native American communities. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr IA10.