The burden and impact of kidney disease on first nations peoples is a national emergency
New treatment guidelines unveiled for first nations peoples living with kidney disease
Kidney disease is one of Australia’s biggest killers. On average, 63 people die with it every day – more than breast cancer, prostate cancer and road accidents.
Due to the insidious and often silent nature of the disease, early diagnosis requires a proactive approach. Detection often happens too late as individuals can lose up to 90 per cent of their kidney function before noticing any obvious signs. At this stage the damage is irreversible.
The burden and impact of kidney disease on First Nations Australians is significant and a national emergency. Compared with the non-indigenous population where kidney disease affects 1 in 10, First Nations Australians are twice as likely to develop kidney disease and nearly four times more likely to die with it. They are also less likely to have access to life-saving dialysis care and transplant (13% of transplants compared to 51% in non-indigenous patients, ANZDATA registry 2018).
For the past four years, Kidney Health Australia has coordinated a Federal Government-funded, ground-breaking project team, led by University of Sydney research program CARI (Caring for Australians and New Zealanders with Kidney Impairment), to develop Recommendations for Culturally Safe Kidney Care for First Nations Australians – a set of guidelines to improve the diagnosis and management of chronic kidney disease in First Nations Peoples.
The release of the new guidelines will be announced and celebrated at simultaneous clinical and community launch ceremonies on Sunday, October 16 in Sydney and Adelaide.
“These guidelines aim to transform how kidney disease is diagnosed and managed within Indigenous communities,” said Kidney Health Australia CEO, Chris Forbes.
“Changes need to occur within the health sector to increase earlier detection of kidney disease within these communities and also ensure equitable and culturally appropriate care.”
“Yarning Kidneys”, a purpose-created consultation group with First Nations Peoples held across the country (run by KHA and other contributors) identified the needs of the community and developed the central ideas that underpin the final guidelines.
“The end result are guidelines which are underpinned by community voice and outcome-focused, providing tangible and meaningful recommendations to implement across multiple levels of the health system,” Mr Forbes said.
The guidelines recognise the imperative to ensure cultural safety and include decolonising approaches to healthcare delivery. Recommendations include increasing self-determination and empowerment of individuals, recognition of the importance of family, connection to Country, and spirituality to health and wellbeing.
Transport is also vital – the guidelines will encourage health services to develop clear pathways for ensuring transport and accommodation needs are prioritised.
Other recommendations include the use of interpreters, Aboriginal health liaison personnel, and public awareness campaigns including First Nations Peoples who have lived experience with chronic kidney disease.
Pitjantjatjara/Yankunytjatjara Elder, Inawinytji (Ina) Williamson, was forced to move to Adelaide from Anangu Pitjantjatjara Yankunytjatjara in the remote north-west of South Australia in 2018 to access life-saving dialysis treatment.
What began as her yarn with Ngarrindjeri and Yorta Yorta woman, Nari Sinclair, who also is living with kidney disease, grew into the AKction group which has advised Kidney Health Australia throughout its research on these guidelines.
“It’s about time people listened. We want action,” said Ms Sinclair.
“The guidelines are important because they show health services and specialists are listening and coming on our journey. Our families are important along this kidney journey, we need to include them too.”
The AKction reference group has previously lobbied governments for improvements for rural and remote renal patients.
“This is a significant milestone towards better kidney healthcare for First Nations Australians and we encourage everyone to spread the word about the new guidelines and help both community members and healthcare practitioners to embrace the recommendations,” said Mr Forbes.