Kidney Disease and Barriers to Treatment in Indigenous Communities
BY: Sumaya Dano
A healthcare system may provide world class medicine, but unless all of its users can access it, the system is second rate. Understanding and addressing these gaps in health care access can complement our current research discoveries and drive advancements in medicine. Canada is a global leader in Chronic Kidney Disease (CKD) research. CKD involves a gradual loss of kidney function and affects over three million adults in Canada.1 Since the emergence of dialysis machines in 1943, different dialysis options have become available to accommodate the varied lifestyles of patients. While hemodialysis requires multiple visits to the clinic each week, peritoneal dialysis can be done at home. Successful kidney transplantations from both living and deceased donors give patients with CKD the opportunity to return to their normal productive lives with a new kidney.
However, the benefits of these advancements and treatment options are inaccessible for many Indigenous Canadians with CKD. The prevalence of end-stage kidney disease is approximately four times higher among Indigenous people, relative to the general Canadian population, yet Indigenous Canadians are less likely to see a nephrologist.2,3 Despite kidney transplantation being an ideal treatment for patients with end-stage kidney disease, Indigenous people are less likely to be placed on a waiting list to receive a kidney transplantation compared to other Canadian patients.4 In fact, there has been an increase in the number of Indigenous patients with CKD that need dialysis, without a corresponding increase in kidney transplantation rates.
The reasons for these disparities are not fully understood, which impairs any efforts to bridge the gap for Indigenous patients to be adequately treated for CKD. One potential barrier to treatment among Indigenous patients with CKD is the geographical distance to hospitals. This limits their access to dialysis services and even necessary lab tests for kidney transplant evaluation. One solution is peritoneal dialysis treatment, which may be ideal for eligible Indigenous patients as it provides the convenience of home dialysis treatment. However, Indigenous patients with CKD are still less likely to start peritoneal dialysis compared to non-Indigenous patients with CKD.5
The disparities in treatment for CKD among Indigenous Canadians are disheartening. As part of my graduate research I’ve encountered many patients who travel far to visit hospitals in Toronto. I’ve come to learn that it’s not just the distance that makes it hard for patients to make the long drives to their appointments in big cities. Patients also face significant financial barriers. In the case of getting the lab work-up for kidney transplantation, patients have told me that it was more “cost-effective” to stay in a hotel for a few days in Toronto as opposed to going back and forth from their hometown. However, cost-effective is nowhere near the right word for most patients, as the costs of staying in Toronto quickly add up to a significant amount of money many patients cannot afford. In addition, I never considered the financial burden kidney transplantation could pose on a person’s life insurance. This came to my knowledge after attending a conference where a mother of a patient with CKD explained how her life insurance went up after donating her kidney to her son. Surely such a selfless act of love should not be accompanied by a higher price tag in insurance rates.
Hearing these different patient’s stories helped me realize there is more than just geographical distance preventing patients from pursuing kidney transplantation. I can only imagine how challenging the situation must be for Indigenous patients. Not only are many Indigenous reserves far away from urban hospitals, but for Indigenous patients to make the trip, they must leave their community and the people who appreciate and understand their culture and values. Many healthcare practitioners, including myself as a research student, do not fully appreciate nor understand the culture and values Indigenous people hold.
Not fully understanding the lives of our patients makes it harder to guide them to a suitable treatment option. For instance, one reason behind the high rates of CKD in Indigenous communities is an increased prevalence of diabetes and obesity.6 Healthy eating habits and exercise are two effective ways to prevent and manage diabetes and obesity. However, when healthcare providers advise their Indigenous patients to make healthier food choices, they are ignoring the fact that food insecurity and limited access to healthy food options are the reality for many Indigenous people living in remote and rural areas. Ignorance of the systemic challenges Indigenous people face everyday can make it difficult to come up with a treatment plan the patient could realistically be able to adhere to.
Canadians have been at the forefront of advanced medical research, particularly regarding diabetes and kidney disease, and their work has improved healthcare outcomes for millions of patients worldwide. In the midst of the great research being done, however, it is important to understand the perspective and priorities of the patients impacted by these fundamental changes in medicine. Currently, CKD is a rising global public health issue resulting in poor health outcomes for patients.8 Disadvantaged and marginalized populations, such as Indigenous communities, have higher rates of CKD compared to the general Canadian population but less access to effective treatments. These disparities should be addressed as they do not reflect our sophisticated advancements in medicine. As Canadians it is our responsibility to harness our considerable capacity for innovative research to understand the barriers to accessing treatment and allow everyone to benefit from our medical advancements.
- Arora P, Vasa P, Brenner D, et al. Prevalence estimates of chronic kidney disease in Canada: results of a nationally representative survey. Cmaj. 2013 Jun 11;185(9):E417-23.
- Gao S, Manns BJ, Culleton BF, et al. Prevalence of chronic kidney disease and survival among aboriginal people. Journal of the American Society of Nephrology. 2007 Nov 1;18(11):2953-9.
- Yeates K, Tonelli M. Chronic kidney disease among Aboriginal people living in Canada. Clinical nephrology. 2010 Nov;74:S57-60.
- Anderson K, Yeates K, Cunningham J, et al. They really want to go back home, they hate it here: the importance of place in Canadian health professionals’ views on the barriers facing Aboriginal patients accessing kidney transplants. Health & place. 2009 Mar 1;15(1):390-3.
- Mathew AT, Park J, Sachdeva M, et al. Barriers to peritoneal dialysis in Aboriginal patients. Canadian journal of kidney health and disease. 2018 Jan 3;5:2054358117747261.
- Collier R. Renal disease more prevalent and problematic for Aboriginal peoples.
- Tonelli M, Hemmelgarn B, Kim AK, et al. Alberta Kidney Disease Network. Association between residence location and likelihood of kidney transplantation in Aboriginal patients treated with dialysis in Canada. Kidney international. 2006 Sep 1;70(5):924-30.
- Garcia-Garcia G, Jha V, World Kidney Day Steering Committee. Chronic kidney disease in disadvantaged populations. Nephron Clinical Practice. 2014;128(3-4):292-6.