New Treatment Guidelines Unveiled for First Nations People 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.

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 one 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 percent of transplants compared to 51 percent in non-indigenous patients).

For the past four years, Kidney Health Australia has coordinated a Federal Government-funded 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, 16 October in Sydney and Adelaide.

Chris Forbes is Kidney Health Australia CEO.

“These guidelines aim to transform how kidney disease is diagnosed and managed within Indigenous communities,” he said.

“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 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.”

TheAKction 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.

Background on Guidelines

CARI guidelines (Caring for Australians and New Zealanders with Kidney Impairments) operate as an externally funded research program within the School of Public Health, Faculty of Health and Medicine at the University of Sydney.

The program develops materials focused on the clinical management of patients with chronic kidney disease, including patients on dialysis and transplant recipients. For more than 20 years, Kidney Health Australia has been a foundational partner of CARI – working alongside the program to improve the quality of care and outcomes for patients with kidney disease.

Work on the guidelines was first undertaken in 2021, after an extensive consultation process with Indigenous health groups, people with lived experience, their families and carers and advocates.

Kidney Health Australia was granted an additional $770,000 to work with the CARI guidelines project team to develop written guidelines based on the consultations.

The 80-page CARI guidelines are available online.