New documentary spotlights 'silent killer' affecting First Nations people

A new documentary shares the challenges Aboriginal people experience when trying to access kidney transplants.

The most recent data suggests Aboriginal and Torres Strait Islander adults are twice as likely as non-Indigenous adults to develop chronic kidney disease.

The documentary has been shown in Adelaide and Sydney with plans underway for more screenings.

When Kelli Karrikarringka Owen needed a kidney transplant 10 years ago, her family members offered to donate their organs.

But the Kaurna, Narungga and Ngarrindjeri woman said the medical system "pushed back and said no".

"This is systemic racism that I’m talking about," she said.

Ms Owen, now a public health researcher at Adelaide University, has Alport syndrome – a genetic kidney disease which previously left her feeling lethargic, itchy and without a sense of taste.

For about three years from the age of 41, the Murray Bridge local would drive about one hour to Adelaide every second day of the week to be hooked up to a dialysis machine for five hours.

"I actually had to withdraw my two youngest children from school, get in a taxi and travel down to the old RAH (Royal Adelaide Hospital) three times a week," she said.

Eventually, Ms Owen received a kidney from a donor from New South Wales through the national donor program in 2016.

While she is now enjoying a life of "freedom" after a successful transplant, she said she felt "angry" that her family's initial requests were refused.

"I could have been there for my younger children that were missing me being there for sports."

Federal government data shows Aboriginal and Torres Strait Islander adults are twice as likely as non-Indigenous adults to have chronic kidney disease.

But First Nations people are less likely to receive a kidney transplant.

Data from 2022, showed 16 per cent of First Nations people receiving kidney replacement therapy had a functioning kidney transplant, compared with 48 per cent of non-Indigenous Australians.

Adelaide University nurse researcher Professor Janet Kelly said kidney disease was known as a "silent killer", with some patients experiencing significant loss of kidney function without any symptoms.

Asked about Ms Owen's experience of having her family's donation requests refused, Professor Kelly said previous research suggested First Nations people could be at greater risk of kidney disease if they donated their organs.

But she said more recent studies showed different outcomes.

"Internationally, it's much more recognised that it is appropriate for First Nations people to donate kidneys," she said.

"In Australia, I think there is a change towards enabling more First Nations people to be assessed and, if there is a low risk for them, to then be donors."

Despite changing advice, First Nations people with chronic kidney disease continue to confront healthcare gaps, especially those living in rural and regional communities.

"A lot of our services are based within major cities and often half of Aboriginal people will live in cities, but half live in rural and remote places, so there is an immediate challenge to accessing equitable services," Professor Kelly said.

"There is a need for more specialist visiting rural and remote locations and providing clinics there."

The Transplant Network founder Peter Crumpton, himself an organ transplant recipient, said he wanted to highlight the discrepancy in transplant rates by creating a documentary.

He travelled to remote communities across the country with Ms Owen, interviewing Aboriginal and Torres Strait Islander people about their experiences of receiving kidney transplants.

The documentary – titled "In Contrast" has premiered in Sydney and Adelaide.

"We spoke to about 10 different people in the documentary, from patients, to carers, to medical professionals," he said.

"My hope for the documentary is that people realise that this gap exists and that there are solutions to fix it."

Ms Owen said she hoped the documentary raised awareness about kidney disease.

"It's a silent disease and we don't want to make it silent anymore," she said.

Planning is underway for the documentary to screen elsewhere in Australia in coming months.