In part two of this investigation into kidney disease in regional and remote Indigenous communities, Natalie Muller explores the hidden burden of disease and finds that without a dramatic change in priorities, low transplant rates hold little promise of hope for the future.

Marlene Spencer Nampitjinpa paints her story on a dialysis machine for Malpa's 'Paint the Future' project. Image: Don Palmer

Bethel O’Keeffe, a Torres Strait Islander woman from Bamaga on the tip of the Cape York Peninsula, has had two kidney transplants but is on dialysis again and is trying to get on the transplant waiting list.

Based in Cairns as an Indigenous support officer at the Kidney Support Network, she’s lucky she now lives in a regional centre where she can dialyse in her house overnight.

There are no dialysis machines in the Torres Strait, so patients in the far north of Queensland must either move to Cairns or fly down several times a week for treatment.

“I know people who have to come down to live in Cairns and they often have to pay rent for accommodation there, as well as pay rent for their house back home, and so some just end up getting frustrated and giving up,” says O’Keeffe.

“[The Government] knows what the road map is, there’s no secret, no surprise and no more research that needs doing, we just need to do it,” says Don Palmer, Project Director for MALPA, the Indigenous arm of Transplant Australia.

He says the move away from home for medical treatment is a huge leap, which can often be traumatic and alienating for patients.

But patients aren’t the only ones feeling the financial – and emotional strain. Family and community life also suffers under the burden of kidney disease.

“One of the really good responses is to try and enable them to get home regularly, frequently and safely so that they can meet their cultural responsibilities, keep their family strong and keep their own spirit strong,” he says.

English is not a first language for the majority of Aboriginal dialysis patients in remote areas, and many have poor access to basic health and education.

O’Keeffe says there is often a communication problem between doctors and patients which influences decisions about whether or not to begin treatment for End Stage Kidney Disease (ESKD).

“Our biggest problem is that we don’t understand the disease and doctors and nurses are often talking in a third language,” O’Keeffe says.

“It’s very frustrating. I know a few people that just throw in the towel and die because they don’t want to deal with all that.”

And while she now works alongside health professionals, O’Keeffe’s personal experience as a patient was difficult.

“It was terrifying when they told me my kidneys were going,” says O’Keeffe.

“I couldn’t understand what the hell was going on around me…it’s so frustrating not knowing what’s going on.

“Where I come from there are no medical procedures, you just take two aspirin and a Band aid,” she says.

O’Keeffe now travels to remote communities for the Kidney Support Network to speak to Aboriginal residents about the importance of getting regular kidney check ups.

Kidney disease is usually not detected until the final stages, and up to 90 per cent of the kidney function can be lost before any symptoms are experienced.

O’Keeffe says if more Aboriginal people came forward for screening, a progression towards ESKD could be slowed or prevented altogether.

“The best thing for us is not to be scared but to try and get more information,” she says.

“I talk to the ones who’re coming down to Cairns. I say, ‘I’ve been there done that.’ We’re trying to get the message across that the earlier you know you’ve got a renal problem you can do something about it, get on to dialysis,” says O’Keeffe.

According to the AIHW, the average age of death for an Aboriginal person with ESKD is between 60 and 62, while the average age for a non-Aboriginal person is between 80 and 82.

ESKD patients can usually survive on dialysis for up to five years before they need a transplant, offering a longer life and a chance to return to country.

At the beginning of 2009, only 13 per cent, or 1258, of people on dialysis were on the transplant waiting list.

The average waiting time is four years, but transplantation rates for Indigenous people are less than one third of the national average, according to Transplant Australia, and transplants are virtually unheard of in remote areas.

“There is clear evidence that there is significantly reduced access to transplantation for Indigenous Australians,” says Alan Cass, director of the Renal Division at The George Institute and professor of Indigenous Health at the University of Sydney.

“I believe that like all people with kidney failure there would be substantial numbers of Indigenous Australians who would do very well with transplantation who are potentially currently missing out,” he says.

To be placed on the organ waiting list, dialysis patients must undergo rigorous health tests and follow a strict medication and dietary regime.

“You’ve got to be a good patient,” says Sarah Brown, manager of the Western Desert Nganampa Walytja Palyantjaku Tjutaku (WDNWPT) Project and The Purple House dialysis centre in Alice Springs.

“The people who are almost on the list tend to always be waiting for one more specialist check up. All the tests have to be done within a period of time. So you start at one end, miss an appointment, the specialist doesn’t come back to Alice for another three months and you have to start all over again… So it’s a bit of a maze that people have to walk through,” she says.

Data shows that Aboriginal and Torres Strait Islander patients are less likely than non-Indigenous Australians to get onto the organ transplant waiting list, and once on the list, less likely to actually get a transplant.

“You have patients in the Kimberley, or Central Australia, or far North Queensland who may be 1000 or 2000 kilometres away from their nearest transplant unit, so that puts profound barriers in place,” says Cass.

Brown said of the 200 people who receive dialysis treatment in Alice Springs, only one is on the waiting list and there are a few who are, “almost on the waiting list.”

And in Broome 12 people from the Kimberley Satellite Dialysis Centre are on the transplant waiting list, says Centre Manager Kath Ballantine.

Australia has one of the lowest transplant rates in the Western world, despite Federal Government initiatives such as the creation of the National Organ and Tissue Transplant Authority in 2009.

A more efficient transplant program would potentially generate major savings within the health system.

The cost of keeping someone on dialysis is $40-80,000 per year. In contrast, the upfront cost of a transplant is around $60,000 in the first year, but ongoing costs are around a third of that for dialysis.

Sharelife, a working group created by an independent group of businesspeople, aims to remedy the low transplantation rate in Australia.

Sharelife Director Brian Myerson himself spent three years on the waiting list before receiving a transplant.

“This whole question of the waiting list is very subjective, who should go on and who shouldn’t go on,” says Myerson.

He says communities in every regional area need to be involved in organ donation to make more organs available for transplants.

“Our hope is that by increasing the number of transplants we would actually increase the waiting list,” says Myerson.

“If we can get all communities including local Aborigines to be part of this whole donation culture, have a cultural change that we all wish to donate when we pass away to save somebody else’s life, that’s a very important part of a cultural change,” he says.

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