Part one of an investigation into kidney disease in Indigenous communities shows the stark choices that confront patients in regional and remote areas as they struggle to access the treatment they need to survive. Natalie Muller investigates.

Alison Bell on dialysis at the Purple House, Alice Springs. Image: Louise Whelan

Faced with the prospect of leaving their communities and travelling thousands of kilometres for treatment, many Indigenous Australians with end stage kidney disease (ESKD) are so alienated from life-saving dialysis they are choosing to die on country.

Aboriginal people make up around two and a half per cent of the Australian population, but they are over-represented among ESKD patients.

In some remote areas, rates of ESKD are up to 30 times higher in Indigenous Australians, according to the Australian Institute of Health and Welfare (AIHW).

To stay alive, these patients need a kidney transplant or regular renal dialysis, a time-consuming process of filtering the blood through a machine for four to five hours, three times a week.

According to Oxfam, half the sufferers of serious kidney disease in Australia live in remote regions where health facilities are scarce.

To get dialysis they must travel thousands of kilometres several times a week or relocate altogether.

“People talk about life on dialysis as being about waiting,” says Sarah Brown, manager of the Western Desert Nganampa Walytja Palyantjaku Tjutaku (WDNWPT) Project and The Purple House dialysis centre in Alice Springs.

“You wait for your dialysis day, you wait for the bus, you sit in the chair and you wait while your blood is cleaned, you wait to go home, and then you wait for your next dialysis day – a pretty miserable existence away from all the things that are important like family and country and dreaming stories and all the rest of it.”

“Some people do choose to go home and finish up – just die,” she says.

“That can often take a couple of weeks once you’ve decided you’re not going to have anymore dialysis. It’s not a particularly pleasant way to die,” says Brown.

AIHW data shows ESKD kills up to 10 times more Indigenous Australians than non-Indigenous Australians, and is responsible for more than one third of Aboriginal deaths.

According to the WDNWPT Project website, each year around 45 new Aboriginal patients from central Australia’s Western Desert are dislocated from their homes for indefinite dialysis treatment in Alice Springs, placing huge strains on their communities and families.

“They have to make an incredibly difficult decision to move what might be hundreds of kilometres away to access the care they need to stay alive,” says Alan Cass, director of the Renal Division at The George Institute and professor of Indigenous Health at the University of Sydney.

“It cuts off their relationships with family and community where they might have lived for their entire life.”

“Communities in Central Australia and in other regions have clearly expressed their need to have access to care as close to home as possible and this does influence people’s decisions to take up and continue treatment,” he says.

The WDNWPT Project was launched in 2000 to raise funds to support dialysis patients in and around Alice Springs, and to build a dialysis centre in Kintore, 530 kilometres to the west.

The Kintore dialysis centre opened in 2004, eliminating the six hour drive to Alice Springs for all of the community’s ESKD patients.

A second dialysis clinic is under construction in Yuendumu, 300 kilometres from Alice Springs.

“The great thing about our project is that the people raised their own money,” says Brown.

“We found a way to make it work and people have been able to go home on dialysis and it’s had a big, positive affect on their lives because kidney disease and dialysis in Kintore now isn’t so scary, people understand about it,” she says.

Brown also runs The Purple House, a dialysis centre in Alice Springs where families can stay with patients receiving treatment until they’re ready to go back to their communities.

“Purple House is their place, the family can be with them and we cook together,” says Brown.

“People do have to come into Alice Springs for their dialysis, but at least a couple of times a year we can get them home for 3 or 4 weeks and they can spend time at home, catch up with their grandkids, look after their communities and all those other important things,” she says.

In many small communities, a host of complex hygiene concerns such as lack of access to clean water, reliable electricity or sanitary facilities where dialysis machines can be installed make establishing a dialysis clinic a near-impossible feat.

“A community of 400 people somewhere in a remote area may, if it’s lucky, have a live-in nurse,” says Cass, “so the notion that they might have one or two people with a complex chronic disease needing treatment in that remote area is a challenge.”

Lack of basic support services, such as accommodation in remote areas where satellite dialysis units are based, also poses problems, Cass says.

“The need to build housing for Aboriginal and Torres Strait Islanders in remote areas to access care can be a major barrier to establishing local services,” he says.

The incidence of kidney disease in the Northern Territory and Western Australia is the highest in the country.

In the Kimberley region of Western Australia, dialysis prevalence has more than tripled in the last decade and is growing at a much higher rate than the rest of thew state, according to the Kimberley Aboriginal Medical Services Council.

In 2002 a satellite dialysis centre opened in Broome, drastically reducing the travel time for Kimberley patients who previously had to journey to Perth, some 2,200km away.

That’s roughly the distance between London and Athens.

Kath Ballantine, the Centre’s manager, says 60 patients come to the centre for dialysis, some travelling from as far as Halls Creek, seven hours drive away.

But there is still a great need in the Kimberley for more services.

20 people are on a waiting list to use the dialysis machines in Broome.

They must live and be treated in Perth until more machines become available, making it possible for them to return to their communities in the Kimberley.

“They have to live in a hostel in Perth and they don’t like being down there,” says Ballantine.

In places like the Kimberley, and the communities around Alice Springs, hundreds more patients will need to start dialysis in the next few years.

“Is it really that expensive to have dialysis in communities?” asks Brown.

“When someone comes in for dialysis, there’s a gap in the community where they should be. Many of the middle-aged people that come in for dialysis are leaders in their communities.

“These are the people who need to be around to take care of their communities and keep them strong,” she says.