Indigenous patients with kidney disease are missing out on transplants because they are not being put on waiting lists for the potentially life-saving surgery, new research has found.
The research by experts in South Australia and the Northern Territory has been heralded as important because it confirms that the system is biased towards non-Indigenous patients.
The findings were published in the Medical Journal of Australia this week.
One of the report authors, kidney specialist Dr Paul Lawton of the Northern Territory’s Menzies School of Health Research at the Charles Darwin University, told NIT this week it was discrimination.
He said Australia should follow the lead of countries such as the UK and Canada and adopt guidelines requiring equity in kidney transplants.
Dr Lawton said Indigenous patients reported not being told that a kidney transplant was an option.
He said it should be mandatory for patients to be presented with all their treatment options. In cases where doctors thought a treatment option was not suitable for that patient, they should explain why.
“There is research that tells us that Indigenous patients are seen as potentially more non compliant,” Dr Lawton said. “So that if you are Indigenous you are perceived to be less likely to take tablets regularly, which you need to do if you’ve had a transplant to stop rejection.”
“The reality is that’s not what the data tells us. The data tells us that Aboriginal people are more likely after kidney transplants to have problems with infection — perhaps because they are actually taking their immune lowering medications.”
The research published this week found Indigenous patients with end-stage kidney disease were less likely than non-Indigenous Australians to be placed on a waiting list for a transplant from a deceased donor.
It found the difference was particularly marked in the first year of renal replacement therapy — therapy that replaces the normal blood filtering functions of the kidney.
Data from the Australia and New Zealand Dialysis and Transplant Registry for patients aged 18 to 60 years who began renal replacement therapy in Australia between June 2006 and December 2016 was analysed.
A total of 10,839 patients were found to be eligible to be included on the waiting list for a new kidney. Nineteen percent of these, or 2,039 people, were Indigenous.
The research also found Indigenous patients were added to the wait list later than non-Indigenous people — a median wait time of 942 days for Indigenous patients compared to 416 days for non-Indigenous patients.
The differences between Indigenous and non-Indigenous patients could not be explained by weight, other health conditions, late referral for renal replacement therapy, location of treatment or remoteness, it found.
“We do not know how many patients in our study were not referred for wait-listing because they decided not to proceed,” the report said. “However, in a recent analysis of comprehensive interviews of 143 Indigenous patients with end-stage kidney disease from 26 urban, rural, and remote sites across Australia, 90 percent of participants expressed strong interest in receiving a transplant.”
Dr Lawton told NIT if Australia did introduce equity guidelines it would be possible to monitor they were being adhered to.
“We have a registry which records care for all dialysis and transplant patients in Australia,” he said.
“We can monitor whether, as we do in this research, Aboriginal people are getting a fair go.”
“I’m alleging they are not getting a fair go at the moment.”
Dr Lawton said he was concerned about debate in medical circles that Indigenous people, because they have a lower life expectancy, should be given lower quality kidneys.
“They are saying there aren’t enough (donor kidneys) to go around so we should maximise the benefits for all,” he said. “But the consequences of maximising benefits means that older people will be less likely to get kidneys and Aboriginal people will be less likely to get kidneys, and higher quality kidneys.
“You know who ends up with the kidneys when you do that, people like me, middle-aged, professional white men. And that’s currently what happens. It’s preferential. Not as a policy, but as an outcome.”
Dr Lawton said at the end of 2016 there were 32 Aboriginal and Torres Strait Islander patients on the waiting list for a kidney transplant out of a total 948 patients. Of 12,706 patients on dialysis, 1,727 were Aboriginal or Torres Strait Islander.
“On crude figures, not age adjusted, 1.85 percent of Indigenous dialysis patients were on the waiting list and 8.34 percent of non-Indigenous patients were on the waiting list, not taking into account the age difference, which makes it worse than that,” he said.
“Aboriginal and Torres Strait Islander patients are generally what we call of a transplantable age, they are much younger and of the right age, they are not too old for a transplant.”
Kidney Health Australia clinical director Dr Shilpa Jesudason said the research was important.
“This is an important paper because it uses robust methodology to confirm what has been known for a long time, that is that patients aren’t getting transplanted and they aren’t getting transplanted because they aren’t getting on the waiting list,” Dr Jesudason said.
“This is definitely something that correlates with what we see in clinical practice.”
“Our view at Kidney Health Australia is that this is a complicated area to understand but also to address.”
“The paper basically tells us that even though one of the arguments all along is Aboriginal people don’t get transplanted because they are sicker, they’ve got more heart disease , or more diabetes, but even when you account for those what we call co-morbidity, we’re finding in this paper that their access to transplantation is still lower.”
Dr Jesudason said the issue wasn’t as simple as discrimination.
“What I believe is there are really complicated social, demographic, health care access issues around why Indigenous people are not getting on the wait list,” she said. “There is a lot more work that needs to be done to understand why.”
“Bias might be a small part of it, but I think it is the whole background of social care and health care for Indigenous patients and the inequities that exist that are being seen in the final end point of transplantation, but there’s a lot that has come before that leads to those inequities.”
In June, Federal Indigenous Health Minister Ken Wyatt announced an expert panel would investigate barriers faced by First Nations people needing kidney transplants.
The $250,000 review is being carried out by the Transplantation Society of Australia and New Zealand.
By Wendy Caccetta