Understanding the true burden of cancer in American Indian and Alaska native communities

Background. Cancer incidence rates vary among American Indian and Alaska Native (AI/AN) populations and also often differ from rates among Non-Hispanic Whites (NHWs) living in the same geographic region. [1-4] In addition, geographic differences in incidence rates between AIs and NHWs living in the Northern and Southern Plains are significant. [3, 5, 6] AIs in the Northern and Southern Plains have lower survival rates for most cancer sites in comparison to AIs living elsewhere. [7, 8] Because AI/AN cancer data have significant geographic differences, it is inaccurate to generate statistics for the total population. Most recent data show that the cancer burden continues to escalate among AI/ANs. [3] This burden includes the multiple ways cancer affects an individual, the entire family and their community. For families, these burdens include loss of income, relocation of family to serve as patient caregivers, increased demands (time and money) for transportation to and from healthcare facilities for cancer care, childcare costs, and alterations in traditional relationships. Cancer is more prevalent among elders than in people younger than 50. Typically, elders are the leaders and wisdom keepers of the community. Chronic disease or death deprives the community of that irreplaceable resource. A well-known comment is, "Every time an elder dies, a library burns." The impact of this loss of leadership and knowledge creates a burden that is greatest on small communities. Methods. The authors reviewed the extant epidemiology literature on cancer incidence and mortality in AI/AN populations and the largest AI/AN cancer survivors' database. Two representative cancer sites were examined (breast and colorectal) because both have the potential to improve throughscreening. Findings. Although AI/ANs have significant variations in age-adjusted rates, raw numbers in geographic regions with low age-adjusted rates, such as the Southwest, also identify an excessive burden of disease.Conclusion. Local AI/AN programs need to collect cancer data for their communities. Community based participatory research is the best way to help communities work with academic, state and federal resources to identify solutions. Until local data are available, regional AI/AN data provide the most accurate estimates of cancer incidence, mortality and survival. Both age-adjusted and raw number counts help illustrate the true cancer burden among rural, Reservation and urban AI/ANs. Better data collection will guide communities to develop infrastructure for the full cancer continuum from prevention through end of life. The burdens noted in this chapter provide the rationale for increasing cancer resources for local AI/AN communities.