Low kidney transplant rates for Indigenous Australians are “shocking”, “unacceptable”, and are likely to be driven by racism, the Australian Medical Association (AMA) has said.
Aboriginal and Torres Strait Islander dialysis patients are less likely than other Australians to receive a transplant — remote patients have a tenth of the chance, and urban patients a third of a chance, research suggests.
“I’m shocked by those figures. A ten-fold gap is entirely unacceptable,” AMA president Dr Michael Gannon said.
“The topic of racism in our health system is an uncomfortable one for doctors, nurses, but it has to be one of the possible reasons for this kind of disparity.
“If there’s reasons why Aboriginal and Torres Strait Islanders are not being transplant-listed, they need to be investigated, but the problems need to be fixed.”
Indigenous Health Minister Ken Wyatt said he was disheartened by the disparities, and will urge the Australian Organ and Tissue Donation and Transplantation Board to look into the issue.
“I’d describe it as extremely disappointing,” Mr Wyatt said.
“It’s something I want to focus on for the next 12 months of starting to heighten the awareness — we have to have more Aboriginal and Torres Strait Islander people accessing organs.”
A patient must undergo a “work-up” of health tests to be accepted on to the active waiting list for a new kidney, and each state and territory operates a separate wait list.
The decision to approve a patient is ultimately made by a panel of specialists, which assesses each potential recipient, said Dr Paul Lawton, a nephrologist based in Darwin.
Dr Lawton said there was heated debate among kidney specialists about why transplant rates are low for Indigenous patients in remote and urban areas.
“It’s certainly not fair, and we, myself and several colleagues, have called — and will continue to call — for fairness as part of our system of allocating the scarce resource of kidney donations,” he said.
Kidney specialist, Professor Steve Chadban, a former president of the Transplant Society of Australia and New Zealand, said Indigenous people had a higher risk of death after a transplant.
“We’ve found that Indigenous Australians who return to remote areas in particular were at greater risk of firstly rejecting their kidney — and seeing kidney failure occur — but secondly, of acquiring infection,” he said.
Treatment restricts everyday life
Brenda Dall Acqua has spent nearly five years of her life on dialysis, and she relies on the treatment to stay alive.
Three times a week she visits the Blacktown Hospital in western Sydney and spends up to five hours hooked up to a machine which filters toxins from her blood.
“I’ve sort of got no life. I don’t think I can do this for the rest of my life, no way. It just restricts you from everything,” she said.
She hopes that soon she will be able to get a kidney transplant, but she has been waiting for years to get on the active donation wait list in New South Wales.
“There’s a lot of tests you have to go through, because they check your heart, and they check your everything and then they put you on it, and it’s alright to be on it, but you’ve got to get activated on it [to get a kidney],” she said.
The constant burden of regular dialysis means Ms Dall Acqua can rarely travel far from home, and has missed out on time with her family who live in regional New South Wales.
“I haven’t been home for Christmas for four years, so hopefully if I get a kidney I’ll be going home for Christmas next year,” she said.
“Like with a lot of Indigenous people, they want to go back home to their country, they miss family. You know, that’s their main thing.”
In Australia, 13 per cent of patients receiving dialysis treatment are Indigenous, but just 241 of 10,551 patients with a functioning kidney transplant are Indigenous, according to figures released by the Australia New Zealand Dialysis and Transplant Registry.
‘I don’t think it’s racist’
Eastern Arrernte and Walpiri woman Sheena Hayes is one of few Aboriginal transplant recipients and has high regard for the doctors and nurses who have treated her since she was a baby.
“I’ve been through this system, and I don’t think it’s racist,” she told ABC News.
The 29-year-old had her first kidney transplant as a teenager due to an autoimmune disease called glomerulonephritis.
After her first kidney donation failed, she was waitlisted and received a second kidney transplant five years ago.
“It’s not a Christmas present. It’s not a gift you can get every day and then use it and throw it away, there’s more to having a transplant — we’re very susceptible to having infections,” she said.
Ms Hayes said she understood why some doctors may not consider remote patients as suitable organ transplant recipients.
“You’ve got to take into account the communities we live in — we have lots of families living in overcrowded housing,” she said.
“It’s a much more complex issue.”
Ms Hayes recently moved back to Alice Springs, where she was raised, to work for Western Desert Dialysis, a community-run Aboriginal dialysis centre.
The patients she works with are desperate to go back home to their communities — many have been forced to move because there are few dialysis chairs in remote areas.
“I was much more determined to take care of myself, whereas the old people, they just want to get home to country,” Ms Hayes said.