Hope and healing: a new approach to treatment is helping Indigenous Australians fight kidney disease

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Hope and healing: a new approach to treatment is helping Indigenous Australians fight kidney disease

By Liam Phelan

Sitting on a makeshift daybed on the front verandah of his home in the red dust of Yuendumu, Victor Ross speaks of a time when he took gaggles of boys into the desert to initiate them to become men.

Carer Dadu Corey and her husband Victor Ross, who has renal failure, at their home in Yuendumu, Northern Territory.

Carer Dadu Corey and her husband Victor Ross, who has renal failure, at their home in Yuendumu, Northern Territory. Credit: Janie Barrett

"Back then we took boys all around. Hunting, eating, dancing. Long time out there," the Warlpiri man says, languidly pointing to a dusty track that twists through stunted scrub and stretches off into the shimmering blue horizon of the Northern Territory.

Ross and his wife Dadu Gorey are old now. They are also two of the many thousands of victims of the scourge of kidney disease causing death and despair across the western desert of central Australia and beyond.

An estimated one in five Indigenous adults (59,600 people) has biomedical signs of chronic kidney disease, according to the Australian Bureau of Statistics.

According to the latest research from the Menzies School of Health Research, by the end of 2017 there were 355 patients on dialysis in Alice Springs, or one in every 66 people. Each year the Northern Territory treats 120 new patients.

"I have been involved with this for the past 20 years and renal failure has reached epidemic proportions for Indigenous people in central Australia," Menzies researcher Dr Paul Lawton says. "It's a major problem that we have not come to grips with."

Kidney disease is often called a "silent disease" because sufferers can lose up to 90 per cent of their kidney function before experiencing any symptoms. Diabetes, poor diet, high blood pressure and age are all contributing factors. When end-stage kidney failure develops, which is common in central Australia, the person either needs a transplant or dialysis three times a week to survive.

Purple House chairman Bobby West Tjupurrula and CEO Sarah Brown in Alice Springs.

Purple House chairman Bobby West Tjupurrula and CEO Sarah Brown in Alice Springs.Credit: Janie Barrett

But there is hope amid the despair. Indigenous-run community health group Purple House now offers dialysis at 15 remote locations across three states. One of Purple House's clinics is at Yuendumu, where forward-thinking Warlpiri elders including Harry Collins used mining royalty money to fund a four-chair dialysis unit.

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According to Kidney Health Australia, Indigenous people in very remote communities are most at risk of suffering from kidney disease. Yet, before Purple House was established, these patients were forced to travel hundreds of kilometres to urban centres such as Alice Springs and Darwin for treatment, where there is a dire lack of accommodation and social support.

Purple House has two dialysis machines in Alice, and operates the Purple Bus, a colourful mobile renal clinic that travels to communities so patients can attend funerals or cultural business. Actor Jack Thompson became the service's first non-Indigenous patient this year so he could film in the Northern Territory. The organisation has just received a second bus from the Northern Territory government.

"There is not a family in remote Australia who is not touched by this problem," says its dynamic chief executive Sarah Brown about the epidemic of kidney failure.

"On country": For Indigenous patients, the importance of being treated close to home is paramount.

"On country": For Indigenous patients, the importance of being treated close to home is paramount. Credit: Janie Barrett

Starting with art

Purple House offers much more than medical treatment. It's a shining light for how Indigenous communities can take charge of their own destinies and run a service tailor-made to the needs of the oldest living culture in the world.

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It began in 2000, when Pintupi speakers from Kintore and Kiwirrkurra, west of Alice,  painted four large paintings. These, and others donated by the Papunya Tula art centre, were sold for $1.1 million in an auction held at the Art Gallery of NSW. 

This seed money led to the formation of Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation - or Purple House. The group started with one dialysis machine in Alice and one in Kintore. This financial year it has a projected turnover of $12.9 million, about 150 staff, 250 patients and 170 people on dialysis in the bush. Last year the federal government announced a grant of $25 million over four years.

But it has been a hard fight for acceptance from government and health bureaucrats. "There were lots of people waiting for us to fall on our bums so they could say I told you so," says Brown. "But hope and having some control over your life is huge. It's the strongest medicine."

The core of Purple House's philosophy reflects the deep cultural values of its clients. Whether it's the western desert communities of Pintupi, Warlpiri and Arrernte, or saltwater people from the top end, treatment is based on keeping people on country (Ngurra), living a good life (Kurnpa Wanka) and doing business the right way (Tjukarurru Wangkantjaku).

Bobby West.

Bobby West.Credit: Janie Barrett

"Our clients have a strong sense of holding each other close. What we do is try to honour that and give them a service that reflects that," Brown says.

Chasing chairs

So what is it like, living with end-stage kidney disease? Most Indigenous patients endure many years of dialysis as they are deemed unsuitable for transplants due to health and social problems that go hand in hand with their daily life. As Brown says: "This is a disease of poverty, dispossession and powerlessness."

Purple House chairman Bobby West Tjupurrula is a senior Pintupi man from Kiwirrkurra in Western Australia. He is an award-winning artist, well-travelled and has done shows in New York. He has also been on dialysis since 2012.

"I have lost so many to this disease. My mother, my brother, my friends," West says quietly.

Three times a week, West has to get to a dialysis machine and hook himself up for five hours as his blood is sucked out in one tube, cleaned, and reinserted.  But because of the rise in the number of patients and the shortage of dialysis machines it is not unusual for Indigenous patients to be forced to drive or fly around the territory for a vacant chair.

Brown says 20 years ago people were terrified to leave home as they thought they might never return. "When old people come to town, they get so lonely, so sad. They miss their family. But to give them a chance to be treated on country - it's to give them life."

Purple House director Preston Thomas, or "Mr T", in Alice Springs.

Purple House director Preston Thomas, or "Mr T", in Alice Springs.Credit: Janie Barrett

Ngaanyatjarra man and Purple House director Preston Thomas, from Warburton in Western Australia, says Purple House has strong empathy with its clients. "They are like family. They understand the problem and they understand us."

Kidney expert Dr Lawton says patients are more likely to attend dialysis if they are closer to home. "The hospitalisation rate is also much lower for those who have access to dialysis in remote communities. Overall they have 20 per cent fewer overnight hospitalisations."

He says there is a common concern that dialysis within remote communities might not be safe because of fears of infection, poor hygiene and lack of nursing staff. "But in fact there is no increased risk of death. When you combine this with the fact that it is also not any more costly, the arguments in favour become much more compelling."

Gundimulk Wanambi Marawili gets dialysis treatment at Purple House in Alice Springs.

Gundimulk Wanambi Marawili gets dialysis treatment at Purple House in Alice Springs.Credit: Janie Barrett

Gundimulk Wanambi Marawili, from the Arnhem Land township of Yirrkala, has been receiving treatment since 2010. She has a commanding presence and a powerful stare. "Old people used to call this sickness 'never return home' but now we can go back. Without the machine, I wouldn't be talking here."

Teacher Jeff Hulcombe, who has worked in Pintupi-Luritja lands since 1980, has seen the full extent of the renal catastrophe. "At the time [around 2000] it was devastating what was going on in Alice Springs. People were dying one after the other."

According to the Menzies School of Health Research, the death rates from kidney disease are 2.8 times higher among Indigenous Australians than other Australians. In 2015 more than 200 Indigenous people died nationally.

The good oil

More recently, Purple House has turned to other enterprises, including bush balms. These are free to patients but sold online to generate revenue and employment.

Leaves are ground up for Purple House's Bush Balm.

Leaves are ground up for Purple House's Bush Balm.Credit: Janie Barrett

This project was initially funded by aid organisation Caritas but has now become self-sustaining.

For one balm, Deanne Wano gathers Arrethe (Eremophila freelingii) from a site just east of Alice. The leaf is ground using a bush mortar and pestle, infused in warm olive oil and mixed with beeswax. It's used to treat dry skin, eczema, cuts, sores, burns and bruising.

Deanne Wano gathers Arrethe leaves east of Alice Springs.

Deanne Wano gathers Arrethe leaves east of Alice Springs. Credit: Janie Barrett

Brown says the balms are another example of using traditional knowledge to help clients. The challenge now is to expand and offer more services, but not lose their core focus on renal treatment.

She says Purple House helps bust stereotypes. "Some people think this disease is connected to alcohol, but it isn't. Many of these communities are dry.

"We deal with people who hold the cultural knowledge of this land. This is vital, not just for the future of these communities but for the future of Australia.

"If people die away from their country without passing on their knowledge, we lose it. Whether flash white fellas in Sydney want to identify with it or not, it's thousands of years of knowledge about the majority of the country and it will be lost."

The long-term goal

Brown says bringing about cultural change to help prevent renal failure is the long-term goal, but will take time, resources and innovative thinking.

Because renal failure is so closely tied to diabetes and diet, there is a need to provide better food choices in remote centres, and better education campaigns to convince people to eat healthily.

The hunter-gatherer culture has crashed disastrously into a diet of processed food and sugary drinks, with fresh fruit and vegetables often in short supply.

Purple House directors in front of the Purple Bus.

Purple House directors in front of the Purple Bus.Credit: Janie Barrett

"The prevention story is nuanced. Centrelink and work for the dole changes are toughest in remote communities. Over half the people have no income at all. It can cost $7 to buy a dodgy lettuce. You won't solve this overnight."

Brown says Purple House looks at the total needs of the patient, which means providing them with healthy meals while they are being treated. They also provide aged care advice and even healthy school meals.

"We now have lots of communities asking for help. People aren't able to stay on country because the aged care is so crap. So the community asks for help. Then, if you're cooking food for old people, they say, 'can you do it for the kids too?'"

At the end of 2018 Purple House had its biggest breakthrough, with the government approving Medicare listing for remote dialysis. It doesn't fully fund treatment, but it goes a long way to providing a sustainable financial future for the organisation. Rather than have to rely on grants or fund-raising, they now have a guaranteed income stream based on how many people they treat. "This is a real game-changer for us," Brown says.

Carer Dadu Gorey outside her home in Yuendumu. Her husband, Victor Ross, is on dialysis.

Carer Dadu Gorey outside her home in Yuendumu. Her husband, Victor Ross, is on dialysis.Credit: Janie Barrett

And mortality rates in Alice have fallen significantly. The dialysis patient mortality rate in Central Australia is now a quarter of what it was in 1999 and is less than half the rate for the rest of Australia, according to the federal government.

"We are not really sure why this is, but one theory is it's because of the Purple House way. This operates on principals of respect, deep understanding of how people should be treated," Dr Lawton says.

Brown is optimistic about the future. As she bounces across Alice in her sky blue 1957 Morris Minor, the former nurse talks passionately about the road ahead. "People from remote communities are about resilience, sense of humour and compassion ... Aboriginal people have plenty to teach all of us."

Liam Phelan travelled to Alice Springs with the assistance of Caritas.

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