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Indigenous People Have The Highest Rate Of Kidney Disease But Are The Least Likely To Get A Transplant

Advocacy Groups Say Reforms To Organ Donation Failing Indigenous Australians.

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In 2014 the demand for kidney transplants was higher than any other organ in Australia, and while the Aboriginal community had the highest rates of chronic kidney disease in the country they were also the least likely to receive a transplant.

Queenie Stewart on dialysis. (Supplied)

According to the Australian Institute of Health and Welfare, (AIHW) Aboriginal and Torres Strait Islanders are ten times more likely to die from kidney disease compared the non-Indigenous population. A staggering one-in-five (almost 18%) of Aboriginal people aged over 18 have signs of chronic kidney disease, but they only have a one-in-four chance of receiving a transplant when compared with the rest of the country.

Queenie Stewart, 43, suffers from chronic kidney disease and has been on dialysis for over five years. Every second day she spends five hours on a machine that cleans her blood and keeps her alive.

"I had to move to Alice Springs, find somewhere to live and give up my job at the art centre in Yuendumu. I am scared and I want a transplant, I have been on the list for one year now," Queenie tells BuzzFeed News.

The disease has dramatically changed Stewart's life. The treatment makes her physically sick. She is over 300 kilometres from her home of Yuendumu in the Tanami Desert. The distance and isolation mean that Stewart is missing cultural obligations and her children are missing her.

"I need to teach them stories and teach them about culture on country. I worry about my kids because I am not always around."

Stewart says kidney disease amongst the Aboriginal community in central Australia is rife, pointing to her own family as an example of the wider community.

"My dad died on dialysis and my mum was on dialysis for years. My sister has had a kidney transplant."

Organ donation advocacy groups say the federal government's failure to reform the system has failed the Indigenous community.

Brian Myerson, director of ShareLife. (Ian Waldie / Getty Images)

In 2008, the Federal Government invested $250 million to create The National Reform Program in a bid to increase organ donation in Australia.

The reforms saw an increase in Australia's donor rates but remain lower than other developed nations. Australia is currently ranked 20th in the world.

An inquiry led by federal assistant health minister Fiona Nash into why the reforms didn't deliver higher donor participation rates ended this week.

Brian Myerson, director of ShareLife, a community reform group consisting of medical and business experts, told BuzzFeed News that the government priority in any future actions should focus on Indigenous needs.

"We need government to stand up against entrenched practices and make changes that will enable real reform, for the sake the one-in-five Indigenous Australians who have indicators of chronic kidney disease," he says.

The NT has the highest rate of chronic kidney disease, and the majority of those people are Aboriginal. According to the Northern Territory Department of Health, at least 85% of are Aboriginal.

Myerson says the Northern Territory requires just over two percent of those with chronic kidney disease in the NT are actually on the waiting list to receive a donor's kidney.

"There’s a lot of work and hassle being to be on the waiting list so the incentive to be on the waiting is if you actually have to believe you’re going to get a transplant. If you believe your chances of getting a transplant are very low then it's not worth the effort," Myerson said.

BuzzFeed News has requested comment from the Assistant Health Commissioner Fiona Nash and is awaiting a response.

Formerly with BuzzFeed News, Allan Clarke is a NITV reporter based in Sydney.

Contact Allan Clarke at arielle.benedek+AC@buzzfeed.com.

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