Background to the NIKTT
Why Kidney Transplantation Equity Matters
Chronic Kidney Disease
About one in ten Australians are likely to have biomedical signs of chronic kidney disease (CKD). For Aboriginal and Torres Strait Islander people, this likelihood doubles to every one in five people. Progression to end-stage kidney disease, or kidney failure, doesn't happen to everyone, but proportions of patients progressing to failure and therefore requiring kidney replacement therapy (KRT) or dying has been increasing over time (AIHW, 2022).
Aboriginal and Torres Strait Islander people are nearly seven times more likely to progress to treated kidney failure than non-Indigenous Australians. Overall, the incidence rates of kidney failure for Aboriginal and Torres Strait Islander patients are markedly and persistently higher than for non-Indigenous patients (Figure 1). Aboriginal and Torres Strait Islander Australians thus experience higher rates of kidney failure at all age groups over 15 years of age, with this disparity greatest amongst Aboriginal and Torres Strait Islander women (ANZDATA, 2021).
Kidney Replacement Therapy
For patients with kidney failure, treatment options are dialysis, transplantation, or palliative care. Aboriginal and Torres Strait Islander people are significantly more likely to be treated with facility-based haemodialysis (74%) with very few accessing home haemodialysis (6%), long-term peritoneal dialysis (6%), or kidney transplantation (15%). In comparison, most non-Indigenous Australians received a kidney transplantation (51%), with 10% accessing peritoneal dialysis, 10% home-based haemodialysis, and 30% facility-based haemodialysis (ANZDATA, 2021).
Therefore, with many more Aboriginal and Torres Strait Islander peoples being diagnosed at younger ages with kidney failure, and most patients reliant on facility-based care, Aboriginal and Torres Strait Islander people are more likely to spend years, if not decades, longer on dialysis – away from their homes, Country, communities, and support.
Transplantation is the optimal treatment for kidney failure. In Australia, however, as mentioned above, kidney transplantation is inequitable for Aboriginal and Torres Strait Islander peoples.
In 2020, just 15% of Aboriginal and Torres Strait Islander peoples on kidney replacement therapy had received a kidney transplantation (ANZDATA, 2021). For all other ethnicity groups, 50% of peoples on kidney replacement therapy had received kidney transplantation.
Not only is transplantation the preferred long-term clinical treatment for kidney failure, it is the desired treatment option for many Aboriginal and Torres Strait Islander people. Transplantation allows people to return to living their life the way they choose, without needing to travel for care or spend many hours, many days each week, connected to a dialysis chair.
Yet numerous barriers exist for Aboriginal and Torres Strait Islander peoples with kidney disease in accessing both waitlisting and transplantation. Institutional racism, complex workup procedures, lack of rural and remote specialist care, and confusing transplant education (or the lack thereof) has historically contributed to the disparities seen in both waitlisting and transplantation for Aboriginal and Torres Strait Islander peoples.
These barriers are system barriers and must be addressed by our Australian health care and supplementary services to ensure Aboriginal and Torres Strait Islander peoples have equitable access to the waitlist and transplantation.
The National Indigenous Kidney Transplantation Taskforce was funded to undertake four main objectives:
Establish the Taskforce and networks, including Indigenous Reference Groups and a National Panel of Aboriginal and Torres Strait Islander kidney patients and advocates;
Enhance data collection and reporting;
Pilot initiatives to improve patient equity and access; and
Evaluate cultural bias interventions.