In the United States, diabetes is the leading cause of kidney failure, and the prevalence of diabetes among American Indians and Alaskan Natives (AIs/ANs) is one of the highest among any racial and ethnic group. In the United States, diabetes accounts for 69% of new cases of end stage renal disease (ESRD; diabetes-associated ESRD [ESRD-D]) among the AI/AN population (1).
The roots of this disparity began in the 1950s and 1960s, when the epidemic of diabetes among the AI/AN population was soon followed by a dramatic increase in diabetic kidney disease and subsequent kidney failure, first described in the 1980s (2). From 1982 to 1996, ESRD-D among AIs/ANs increased substantially and disproportionately compared with other racial and ethnic groups (1). In 1996, the incidence rate of diabetes among the AI/AN population was approximately 4 times the rate of Americans of European ancestry (2). As a result, the Indian Health Service (IHS) implemented a systemic approach to diabetes care using evidence-based interventions and later established the IHS Kidney Disease Program. These diabetes standards of care were revised in the early 1990s to include screening, identification, and treatment of chronic kidney disease (CKD), which became a part of primary care delivery to indigenous communities served by the IHS (2). The systematic implementation of diabetes and CKD standards of care has contributed to the decreased incidence of ESRD-D among AI/AN adults by 54% from 1996 to 2013—a triumph for kidney health equity. Among adults with diabetes, ESRD-D incidence was the same in AIs/ANs as in White Americans by 2013 (1).
Despite the decrease in incidence in ESRD-D, the prevention of diabetic kidney failure continues to be a challenge. Personally, I come from a small AI community with a huge burden of diabetic kidney disease and ESRD-D. I have experienced my own father and paternal grandmother affected by diabetes and ESRD-D. Thus, this issue is very close to my heart and a primary reason for my decision to pursue a career as a kidney health professional.
There are several important considerations for health care professionals who provide care to this population. First, as a nurse and provider, I have learned that it is important to approach an AI/AN patient who has been newly diagnosed with CKD or ESRD-D with sensitivity, even if the provider is unaware of a particular culture. Many AI patients from the Southwest tribes, for whom I have provided care, associate the terms “kidney disease” or “dialysis” with a negative connotation, such as shameful or a death sentence. Patiently educating these individuals is an important first step to building trust and diminishing stigmas.
Second, it may help to start a conversation with a new patient by simply asking, “How much do you know about kidney disease?” This question can help clear up misconceptions, fears, or myths about kidney disease. It is not uncommon for AI/AN patients from a small community to know of a family member, relative, friend, or neighbor who is or has been on dialysis, but that experience may interfere with the patient's proper understanding of his or her own kidney disease.
Many AI/AN individuals live in multigenerational households, where family members collectively provide encouragement and support for their loved ones with kidney disease. Educating the patient and family together about kidney disease and care is crucial. I feel this gives the patient empowerment and hope and helps him or her to be more receptive to interventions offered to slow the progression of CKD and prevent ESRD-D.
Through patient education and adherence to evidence-based practice, all kidney health professionals can work together to narrow the disparities faced by AI/AN patients and their families.
Bullock A, et al. Vital signs: Decrease in incidence of diabetes-related end-stage renal disease among American Indians/Alaska natives—United States, 1996–2013. MMWR Morb Mortal Wkly Rep 2017; 66:26–32. doi: 10.15585/mmwr.mm6601e1
Narva A. Population health for CKD and diabetes: Lessons from the Indian Health Service. Am J Kidney Dis 2018; 71:407–411. doi: 10.1053/j.ajkd.2017.09.017