Australians should be “saddened, angry and flabbergasted” that Indigenous patients are up to 10 times less likely to be added to the kidney donation waitlist than non-Indigenous patients, a leading renal specialist has said.
Dr Paul Lawton, a specialist at the Menzies School of Health Research, said Australian kidney specialists were “well meaning” but that structural racism had led to unacceptably low transplant rates for Aboriginal patients.
He said Australia’s system was tipped towards waitlisting non-Indigenous patients over Aboriginal and Torres Strait Islander people.
“Currently, our system is structured so that us non-Indigenous, often male, middle-aged white kidney specialists offer kidney transplants to people like ourselves,” Dr Lawton told 7.30.
“It both makes me sad and angry that in Australia in the 21st century, we see such great disparities in access to good quality care.”
Dr Lawton treated Dr G Yunupingu for renal failure before the celebrated singer’s death earlier this yearat the age of 46.
‘I think it’s not fair’
Fewer than 2 per cent of Indigenous dialysis patients are put on a wait list for a transplant, compared with 9.5 per cent of non-Indigenous people on dialysis.
Dr Lawton’s research reveals that an Aboriginal patient from remote Australia has a tenth of the chance of receiving a transplant as a non-Indigenous person in the same position.
Indigenous people on dialysis in urban areas have a third of the chance of being transplanted, he said.
“Indigenous Australians are perceived by many doctors, some of whom are kidney doctors, as non-compliant,” Dr Lawton said.
Darwin dialysis patient Jacqueline Amagula would like to be waitlisted, and said she thought the disparity was wrong.
“I think it’s not fair,” she told 7.30.
“Because some of us, we look after ourselves, we eat good food, we have a clean house, we go and do our treatment three times a week, we take our medication.
“I think the health system need to change because I think we need to train more Indigenous mentors, Indigenous nurses, doctors, so we can talk to our local people — cultural way, traditional way.”
Lachlan Ross, a community leader from Lajamanu in Central Australia, describes his kidney transplant as “a gift, and a very important gift”. He was waitlisted and received a new kidney in 2013.
Mr Ross has been a driving force behind new Aboriginal patient coalitions advocating for better care and increased access to transplants.
“You have people spending the rest of their lives in a city, town, and trying to wait for that special moment when you get a transplant,” he said.
“It’s people like me who tell [Aboriginal patients] that this is what you have to do to get on the waiting list, and it’s not a quick waiting list, it’s a long waiting list.”
Racism not to blame, specialist says
Professor Steve Chadban, a kidney specialist at the University of Sydney, said equal access to the waiting list was an area of concern.
“In many areas our Indigenous patients struggle to get onto the waiting list, [but] once Indigenous patients are placed on a waiting list they get access to kidney transplantation at the same rate as every other Australian,” he said.
Professor Chadban said he did not believe racism was driving the gap.
“I really don’t think that it is institutional bias. For example, if that Indigenous patient were here in Sydney compared to, for example, a white patient with the same age and demographic status, my hunch is that they’d be equally waitlisted.”
But he said there were multiple “test hoops” for remote Aboriginal patients to undergo before they were waitlisted.
“I think that access to the work-up process [to be waitlisted] is a key issue, particularly for remote Indigenous Australians,” Professor Chadban said.
“Many analyses showed that some sub-groups of Indigenous Australians would be better off in terms of their life expectancy remaining on dialysis as compared to transplantation.
“It’s a vastly different story for the majority of Australians, where transplantation gives a much better life expectancy.”
‘When things go badly it can be quite catastrophic’
Sarah Brown, chief executive of the Purple House, an Aboriginal-controlled health organisation, described the gulf between Indigenous and non-Indigenous transplant rates as “absolutely stark”.
“It suggests that there are things in the system that puts barriers up for people who have less understanding of the health system, for who English isn’t a first language,” Ms Brown told 7.30.
Transplant recipients in over-crowded and sub-standard housing were at a risk after the complex transplant operation, she said.
“It’s absolutely complex. And it’s really important for us to let people know that [after] getting that kidney there’s still going to be check-ups and people need to be really careful about looking after themselves,” Ms Brown said.
“When transplants go well they can be absolutely life changing and life affirming and give people a whole new lease on life.
“When things go badly it can be quite catastrophic.”