Christine Spencer knows how desperate the need for organ donations in the Northern Territory is.
In her 15 years as an Aboriginal liaison officer, she has witnessed firsthand the complex, chronic health issues gripping Indigenous communities.
But the Warlpiri woman said the topic felt off limits when she raised it with Aboriginal families in Alice Springs.
“There is taboo around it,” she said.
“No-one ever talks about it.”
DonateLife data shows the NT consistently has the lowest organ donation consent rate in Australia, with a five-year average consent rate of 27 per cent.
In 2022, the rate was just 9 per cent compared to 54 per cent nationwide, according to the country’s annual donation and transplant report.
Central Australia has some of the highest rates of chronic kidney disease in Australia and 1 per cent of the population is on dialysis.
But Aboriginal health workers say there is little awareness in communities about where transplanted kidneys come from and there is a widespread hesitancy to donate.
“It’s all about education,” Central Arrernte traditional owner Benedict Stevens said.
“This is where we come in, with the language skills.”
‘A hesitancy to talk about it’
In 2021, Ms Spencer and Mr Stevens joined with other Aboriginal liaison officers working hospitals to take part in a focus group about attitudes towards organ donation in Central Australia.
It was part of a study led by Alice Springs intensive care specialist Paul Secombe that revealed organ donation was a “new and culturally taboo” topic in Indigenous communities.
“There was a real reticence and a hesitancy to talk about it,” Dr Secombe said.
But with Central Australia buckling under rising rates of chronic disease, Dr Secombe said it was crucial the stigma was overcome.
“The best-matched organs for Aboriginal people come from Aboriginal people,” he said.
“Those organs will do the best and they will last a long time in the right person.”
The final report from the research project is due to be released later this week.
‘You could save somebody’s life’
Following the focus group research, Ms Spencer and the other Aboriginal liaison officers have developed an animated video in several languages that explains organ donation in a culturally safe way.
“We have to make more resources because most of the ads you see on TV are not for us,” she said.
Ms Spencer said it would take time for attitudes around organ donation to change because many people continued to grapple with distrust of the broader health system.
She pointed to suspicions around blood transfusions in the 1980s.
“That was a big scare,” she said.
“Some still say: ‘Am I gonna get poisoned?'”
Mr Stevens hopes culturally sensitive conversations with families will increase support for organ donation.
“We want to educate the younger generation,” he said.
“If you do get education, you could save somebody’s life.”
