Dialysis patient Didamain Uibo says she does not get homesick anymore, after more than three decades receiving treatment at a clinic far away from her community.
- More than 700 Indigenous people are on life-saving dialysis in the NT, experts warn
- Expected to increase to 1,000 in next few years
- Medical experts say national taskforce needed to address kidney health
- Access to dialysis and affordable, healthy food in remote communities critical to prevention
There is no dialysis treatment available at Numbulwar – where Ms Uibo is from – a tiny remote community on the Gulf of Carpentaria in the Northern Territory, because the bore water supply is not suitable.
After a failed kidney transplant, Ms Uibo is continuing her treatment at the Nightcliff Renal Unit in Darwin three times a week.
“The nurse comes in, hooks us up on the machine, four and a half hours on the machine.
“As you can see, I’ve got a crossword puzzle to do and a tape with all my favourite songs that’s been recorded by my husband.”
Ms Uibo said most of the patients receiving dialysis at the unit were Indigenous people from communities across the Northern Territory.
“I know many of the patients here, there are some new ones,” she said.
“I’ve lost a few friends. Some of the Numbulwar patients were here. I miss them.”
Unlike many of the patients receiving treatment, Ms Uibo gets the opportunity to return home to Numbulwar occasionally for a short visit with family, but she has had to make Darwin her home.
More than 700 Indigenous people in the Northern Territory need dialysis treatment to stay alive, according to the Menzies School of Health Research.
Professor Alan Cass, a kidney specialist with Menzies, said this figure would increase to more than 1,000 in the next few years.
“It’s many times higher than the rates amongst non-Indigenous Australians,” he said.
Kidney disease rates among Indigenous people are four to five times higher than the rates among non-Indigenous people and the illness affects Indigenous people at a younger age, Professor Cass said.
“Kidney disease affects people 20 to sometimes 30 years younger,” he said.
“These are people who we’re hoping will be in jobs, supporting families, so this has a fundamentally different impact amongst Aboriginal people.”
Access to healthy, affordable food ‘critical’
Professor Cass said the gap in life expectancy for Indigenous people in the Northern Territory remained large, despite some progress in health outcomes.
“I think we need to do more,” he said.
“Clearly in the Territory we face a major challenge.
We’re aware that 90 per cent of Indigenous Australian with signs of chronic kidney disease simply don’t know that they have it – that’s a startling figureProfessor Alan Cass, Menzies School of Health Research kidney specialist
“The burden of complex diseases – kidney, diabetes at a young age, and how it enmeshes with disadvantage, poor access to care for people who are in very remote areas.”
Ms Uibo wants more discussion about kidney failure and its implications in remote communities, along with access to dialysis at home, so people do not have to leave their families.
“It’s important to do that because otherwise they’ll be shocked, they’ll be going to Darwin away from family and home.
“Sometimes people don’t know what’s happening with their body.”
Doctor Christine Connors from Top End Health Services said some people in remote communities were choosing not to make the “huge shift” away from home for life-saving dialysis.
“Some people say no,” she said.
“Because most people need to come to Darwin or Alice Springs to commence dialysis before they can go back home and for some people that’s just an unacceptable burden, in terms of leaving family and being away and all of the issues that entails.”
Professor Cass said a “whole of system” approach to kidney health and access to affordable, healthy food in remote communities were critical to preventing the onset of kidney disease and diabetes.
“We need to consider initiatives where we make it easier for people to get access to vegetables, fruit, water, low-sugar soft drinks for example, so that we can reshape the diet.”
Ms Uibo said she could remember her grandmother pouring half a packet of sugar into meals she cooked, at a time when there was no education about the health impacts of sugary and salty foods.
“It would be easy for nutritionists to go out to community and start introducing what type of food should be eaten,” she said.
“Or in schools – start at school level and go up to the community as well.”
Luke Toy from Kidney Health Australia said a national taskforce on kidney disease – in partnership with Indigenous people in remote communities – was needed to address “fractured” health service delivery.
“The Northern Territory’s high rate is also indicative of what we’re seeing in the Kimberley, in the APY Lands and also in Far North Queensland,” he said.
“We’re aware that 90 per cent of Indigenous Australian with signs of chronic kidney disease simply don’t know that they have it – that’s a startling figure.
“Clearly we’ve got a long way to go.”
A spokesman for the Northern Territory Government said it was spending $48 million a year on kidney disease, with dialysis machines in 25 remote locations.
Celebrating the 10th Anniversary of the Close the Gap Campaign for the governments of Australia to commit to achieving equality for Indigenous people in the areas of health and life expectancy within 25 years.
Response to this NACCHO media initiative has been nothing short of sensational, with feedback from around the country suggesting we really kicked a few positive goals for national Aboriginal health.
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