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MARK COLVIN: A renal health worker in the Northern Territory says it amounts to "institutionalised racism."
A review of organ donation waiting lists has revealed that just 1 per cent of dialysis patients in the Northern Territory are listed for a life-saving kidney. That compares to far higher rates in other states and the ACT.
The research confirms long-standing anecdotal accounts of inequality between states and territories over organ transplants.
The Federal Government's Parliamentary Secretary for Health, Catherine King, says the Northern Territory figures are concerning but believes there have been recent improvements.
Bronwyn Herbert reports.
BRONWYN HERBERT: Aboriginal and Torres Strait Islanders are almost 30 times more likely to get end stage kidney disease than other sections of Australian society.
Many hope to get off dialysis and have a life-saving transplant.
In the Northern Territory more than 400 patients are on dialysis but just a few are on the official transplant waiting list.
Statistics like these are only too familiar to Sarah Brown, a health worker who manages the Western Desert Dialysis mob, based in central Australia.
SARAH BROWN: There's well over 200 people on dialysis in central Australia. Most of those are on haemodialysis which means that people need dialysis three times a week.
So for the majority of people they have to move from their bush communities to Alice Springs to get treatment and it's incredibly difficult for them to get home to see their family and visit country and teach their grandkids.
BRONWYN HERBERT: Patients like 52-year-old Indigenous man, Toby Farmer, who's been on dialysis for almost a decade.
TOBY FARMER: When your kidney, you can't stay one place, no good. Sad, you know? It's sad for us. Like you go three days a week, spent five hours in the dialysis, when they put a needle through you. Five hours. No good.
BRONWYN HERBERT: Transplant physician, Professor Bruce Pussell, from the University of New South Wales, collated the latest publicly available data between 2005 and 2009 on wait lists for kidney transplants.
He says the findings show some disturbing features have emerged.
BRUCE PUSSELL: There's a very low proportion in the Northern Territory. The reason maybe that people of Aboriginal and Torres Strait Islander origin may not be getting listed; they're well over-represented compared to the rest of Australia in terms of dialysis and they're under-represented compared with transplantation prevalence.
BRONWYN HERBERT: The data shows that in the Northern Territory, just three out of more than 400 dialysis patients are on the official waitlist for a kidney.
That's compared to 38 per cent in the Australian Capital Territory.
Sarah Brown says many of her patients mistakenly think they are on the list.
SARAH BROWN: And so often people don't understand what the process is. So someone might say I think I'm on that list but I might be way down the list. But in fact they're not on the active transplant list at all.
It's institutional racism in a way because the system is set up for a literate, numerate person who's had education, understands and follows doctors' instructions and doesn't have all these other cultural priorities.
It's two health systems which collide.
BRONWYN HERBERT: Dr Greg Perry is the director of the Northern Territory renal services.
GREG PERRY: Well look it is a very low figure and it's much lower than other states and the ACT in Australia.
It's a painful fact and patients in the Territory have got reasons for why, you know, so few numbers are on the waiting list for a kidney transplant. It has to deal with the medical issues that they've got; the issues that they would have if they went on to have a successful kidney transplant.
Many of our folk would perhaps run into more complications if they received a successful kidney transplant. It's also got to do with the remoteness of many of our patients and they live out in communities.
BRONWYN HERBERT: Some Northern Territory health workers that I've spoken to amount this to institutionalised racism; the degree of difference between what's happening in the Territory and other states.
What do you say to that?
GREG PERRY: Well look that's a term that's thrown around. It's very easy to use but it's certainly not my experience and I can assure you, and all your listeners, that we are busting our gut to help people move forward to transplantation.
BRONWYN HERBERT: Professor Rowan Walker is the president-elect of the Australia New Zealand Society of Nephrology.
ROWAN WALKER: I think the potential is there for equality. How it actually pans out I think has the potential to be somewhat different.
BRONWYN HERBERT: The national body responsible for organ transplants and donations is the Australian Organ and Tissue Authority.
Catherine King is the Federal Government's Parliamentary Secretary for Health and is responsible for the authority.
CATHERINE KING: There certainly is a disparity in the proportion of young dialysis patients who are making it onto a waiting list.
There's been some improvement in terms of NT, what's happening there. The data on which the article was based is 2005 to 2009 data and there's actually been improvements on the number of certainly Indigenous people getting on the waiting lists in the Northern Territory since that time.
So there's actually been some improvements made.
BRONWYN HERBERT: On average, one person dies every week in Australia while waiting for a kidney transplant. Without hard figures, those who want to get on to the waiting list, and those who are already waiting, may well remain sceptical about promises of improvement.
MARK COLVIN: Bronwyn Herbert with that report.
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