Summer May Finlay and Marie McInerney write:
The Federal Government has announced a national inquiry into barriers faced by Aboriginal and Torres Strait Islander people in need of kidney donations, following concerns of biases in the health system, including systemic racism, lack of access for inland areas and issues of co-morbidity, that have left too many off the kidney transplant list.
Indigenous Health Minster Ken Wyatt told the 5th Aboriginal and Torres Strait Islander Health Summit on Friday that Indigenous people suffered end stage renal disease at seven times the rate of non-Indigenous people but were “much less likely to receive a donor kidney”.
Wyatt said that, in December 2016, there were 1,987 Aboriginal and Torres Strait Islander Australians receiving either dialysis or a kidney transplant for kidney failure. He said:
“Of these, 13 per cent had received a kidney transplant, compared with 50 per cent of other Australians, revealing that First Nations people were nine times as likely to be reliant on dialysis”.
(You can watch his speech to the Summit here, recorded as part of Summer May Finlay’s reporting on the event for the Croakey Conference News Service: bookmark the coverage here. Or read the Minister’s speech here).
Wyatt announced $250,000 funding for an expert panel, led by the Transplantation Society of Australia and New Zealand (TSANZ), to “investigate and identify any barriers faced by First Nations people in need of kidney donations, to help ensure equity of access to lifesaving and life changing transplants”.
Need to heed Indigenous patient voices
One of the members of the panel will be Dr Jaqui Hughes, Australia’s only Aboriginal and Torres Strait Islander nephrologist, based at the Royal Darwin Hospital and at the Menzies School of Health Research, who said the news of the inquiry was “really welcome”.
It was, she said, the result of much clinical expertise and passion across Australia, including a 7 point call to action last year from Aboriginal and Torres Strait Islander people with chronic and end stage kidney disease and their carers that was documented in this report: Indigenous Patient Voices: gathering perspectives, finding solutions for chronic and end stage kidney disease.
One of those points was that Indigenous patients and carers “wanted to know who is in charge of transplantation, what’s going on and how can we have better access and improve outcomes,” she said.
Late last year, Darwin kidney specialist Dr Paul Lawton, also at Menzies and involved in the Indigenous Patient Voices project, raised alarm in the media about “structural racism” and “systemic bias” which meant that Aboriginal and Torres Strait Islander people were missing out on transplants compared to non-Indigenous people.
He was reported as saying an Indigenous person in the Northern Territory would have a “15 per cent chance, so 85 per cent less chance, of getting a kidney transplant even though they’re the same age, same gender, same illness profile” as a non-Indigenous person in the same place.”
A national cohort study identified, as far back as 2003, that lower rates of acceptance onto the transplant waiting list and a lower rate of moving from the waiting list to transplantation for Aboriginal and Torres Strait Islander people were not explained by differences in age, sex, comorbidities or cause of disease.
Indigenous Australians also have poorer outcomes following kidney transplantation, particularly in terms of infectious complications.
Multiple biases driving low access rates
Hughes said there are many biases that impact on Aboriginal and Torres Strait Islander people with chronic kidney conditions, including “travel biases” where most transplant units are based in coastal areas, far from where many Aboriginal and Torres Strait Islander people who need them live.
“Another bias is we know people do really well with transplantation if they’ve only got single organ disease, that is injury to the kidney that only affects the kidney,” she said.
As a result, the greater burden of comorbid illness, including diabetes, among Aboriginal and Torres Strait Islander people can see some patients deemed medically unsuitable, she said.
“There are certainly biases in the system, that’s why it’s important to have comprehensive review of everything to understand where biases lie,” she said.
Hughes said another “amazing” outcome of work like the Indigenous Patient Voices project had been the announcement in April that the Federal Government had added dialysis services to the Medicare Benefits Schedule (MBS) to provide Aboriginal and Torres Strait Islander people living in remote areas better access to lifesaving treatment.
“More people will now be able to go home and have assisted dialysis – that’s terrific, but people also want to go home with all options for all kidney treatment modalities, and that includes transplantation,” she said.
In a statement following Friday’s announcement, Wyatt said he had heard “many moving stories of the trauma and heartache caused by renal disease, including in my own family”.
The Minister said the inquiry panel will comprise people with expertise in working in community, clinical settings, research and public policy and will consult widely across First Nations communities and the health and transplantation sectors.
“This review aims to increase Aboriginal and Torres Strait Islander transplant rates, reduce the burden of regular dialysis and give more First Nations people the chance to live fulfilling lives on country and in their communities.”
Its work will also help inform development of a long-term strategy for organ donation, retrieval and transplantation being undertaken by the Commonwealth, as agreed by the COAG Health Council, he said. He hoped a strategy will be ready for consideration by COAG in 2019.
“Ensuring transplant equity is fundamental to fairness and Closing the Gap in health equality,” he said.
“By identifying the barriers and developing a national framework to address them, this panel can advise on an integrated model of care to change and save lives.”
Hughes said the inquiry panelists do not want a “long, drawn out process”.
“Clinicians have a lot of good ideas, the struggle is to get them spoken about and have a strategic agreement in Australia across states and territories with different health systems,” she said. “It’s really important to bring them together with a national focus”.
You can bookmark this link to follow Summer May Finlay’s continuing coverage of the Summit.