The “‘perfect storm” for an unhealthy population in the middle of one of the world’s healthiest countries — and what one group is doing to help
The Australian aboriginal community Mutitjulu lies in the shadow of Uluru, one of the country’s most popular tourist destinations, but it could not be more different from the polished walkways and restaurants that make up the neighboring resort town of Yulara. Its modest buildings are covered in graffiti that demonstrates a remarkably thorough understanding of English profanities. Some of the houses’ walls are pocked with holes, and the sandy grounds are filled with trash ranging from empty Coke bottles to a wrapper for something called “Magic Foot Candy.” While Yulara seems designed to give vacationing tourists all the services they could ask for, Mutitjulu is equipped with only the most elemental hallmarks of Western civilization: a school, a health clinic, a general store.
Dr. Janelle Trees, general practitioner at the desert community’s health clinic, describes the conditions that many of its roughly 300 residents live in as “extreme squalor.” But for Kinyin McKenzie, a lanky aborigine who returned to Mutitjulu in late September to see relatives and attend a meeting about possible development projects, the place is just home.
“When I come back home, I’m happy because my family’s there,” he says, his smile revealing an abundance of missing teeth. “We sit around together and talk together, have meal[s] together.”
About three years ago, McKenzie had to move to the central Australian town of Alice Springs — around 300 miles from Mutitjulu — for a reason that has become increasingly common among Australia’s indigenous population: dialysis. His kidneys were failing, and if he did not get treatment to replace the blood cleaning work that they used to do, he was not going to survive.
In other words, he moved to stay alive. But he was not too happy about it.
“It’s tough in Alice Springs,” he says. “Nobody comes out and talks to me. I’m by myself. Lonely, you know?”
McKenzie still spends the bulk of his time in Alice Springs, as the medical treatment he needs is much more available there than it is in remote aboriginal communities like Mutitjulu. However, thanks to a mobile dialysis unit that the corporation Western Desert Nganampa Walytja Palyantjaku Tjutaku (the name means “making all our families well” in the aboriginal language Pintupi) launched in 2011, he at least has some opportunities to come back and visit.
The unit, called the Purple Truck, has several goals, says Western Desert Manager Sarah Brown. They include making it easier for aborigines to maintain links with their family and land, giving them something to look forward to, and reducing incidents of kidney disease — partly by demystifying the treatment process “and helping people to engage with a pretty scary system.”
“It’s about dialysis machines,” she says, “and those dialysis machines giving people the option to be home looking after their country.”
Australia ranked second in the United Nations’ 2011 Human Development Index, but its numbers on aboriginal health are grim in almost every category. Their life expectancy is about 10 years less than the country’s non-indigenous population. They died from “intentional self-harm” at 2.5 times the rate of non-indigenous Australians between 2005 and 2009, and in some remote communities, over 70 percent of children were found to have skin diseases and infections, according to the academic resource Australian Indigenous HealthInfoNet.
Kidney disease is no exception to these inequalities. Between 2009 and 2010, aborigines were sent to the hospital for treatment involving dialysis 11 times more frequently than non-indigenous Australians, making it the most common reason for them to be hospitalized. And between 2004 and 2008, the death rate of aborigines from kidney disease was 5.1 times higher than the rate for non-indigenous Australians.
“It’s taken only three or four generations to turn into the epidemic that it is today,” says Fiona Stanley, a professor in the School of Pediatrics and Child Health at the University of Western Australia.
Stanley and other experts in the field are quick to say there is not one grand reason for these harsh statistics. Anne Wilson, CEO of Kidney Health Australia, listed diet and nutrition as two major contributors, as several incidents of kidney disease are brought on by diabetes. In some communities, aborigines may be up to 10 times more likely to suffer from this disease than non-indigenous Australians, according to Australia’s Monthly Index of Medical Specialties.
Much of this unhealthy diet arrived in aboriginal communities as part of the country’s ongoing legacy of colonization — a legacy that has not been very kind to Australia’s original inhabitants. This rose to the forefront of Australian politics in 2007, when the government introduced a series of controversial legislative actions known as “The Intervention” in response to allegations of child abuse and concerns about general dysfunction in aboriginal communities. Measures included placing restrictions on items the aborigines could purchase with welfare income and banning alcohol and pornography in certain communities.
“They use the excuse that they didn’t know how to manage their lives,” he says. “… Against that is 60,000 years of living before colonizers came here.”
A 2010 United Nations report found no evidence that the Intervention’s “rights-impairing discriminatory aspects” were necessary. New York University Anthropology Professor Fred Myers added that these policies angered many of the aborigines, who felt they were being stripped of their autonomy. Bob Randall, one of the listed traditional owners of Mutitjulu, agreed.
“They use the excuse that they didn’t know how to manage their lives,” he says. “… Against that is 60,000 years of living before colonizers came here.”
The aborigines briefly took center stage again in February of 2008, when former Australian Prime Minister Kevin Rudd gave a speech formally apologizing to them for their “past mistreatment.” His address included calls to halve the gap in infant mortality and close the gap in life expectancy between indigenous and non-indigenous Australians within a decade and a generation, respectively.
The country is not there yet. And Wilson believes Western civilization may be part of the problem.
“It’s like the whole issue of white men trying to impose our lifestyle on communities that have, for hundreds of years, actually functioned quite well without us,” says Wilson. “It’s a complex issue. It’s got to do with the westernizing of indigenous communities, which we know doesn’t really work unless that’s what they want.”
The introduction of the western way of life to aboriginal communities ties into what some see as a potential genetic contributor to their high rates of both kidney disease and diabetes. For generations, they lived as nomadic hunter-gatherers, moving frequently and eating what they could when they could find it. But contact with European settlers and non-indigenous Australians — in some cases as recently as a few decades ago — brought with it cars, processed foods and a more sedentary lifestyle.
In short, the aborigines have been faced with what Dr. Graeme Maguire, executive director of the diabetes and cardiovascular research institute Baker IDI Central Australia, calls a “‘perfect storm’ of social, environmental and health risk factors.” They are engaging in less physical activity while eating and smoking more often, which has helped create ideal conditions for kidney disease and diabetes to develop.
“There’s some talk about whether, you know, if you’re a hunter-gatherer, and you don’t know where your next meal is coming from, whether your body adapts to storing the energy quite quickly because you’re going to need it soon,” says Brown. For those living next to a store and eating multiple meals a day, she continues, “your metabolism needs to be quite different.”
Most do not see genetics as the ultimate explanation behind aboriginal diabetes and kidney failure but rather something that can help trigger these problems when combined with other environmental, health and social issues such as poor prenatal care, unsanitary living conditions, and depression.
“They’re not necessarily more at risk,” says Maguire, “but if you add the existing risk with the environment, then it switches it on.”
These are far from the only factors and theories at play. Trees mentions that many aborigines live with high levels of stress; Stanley discusses looking into a link between kidney failure and childhood skin infections; and Maguire is very interested in what happens to the aborigines in utero.
But the most candid assessment concerning the multitude of potential reasons behind why the aborigines have such high rates of kidney disease and diabetes comes from Alan Newbery, clinical services coordinator at the health clinic in the aboriginal community Kintore.
“Now if I could answer that,” he says wryly, “I would probably get a Nobel Prize.”
It would be tough to find anyone who enjoys a treatment as lengthy and frequent as dialysis, but for several aborigines who need to receive it, there is an added difficulty: they have to leave home. For aborigines in remote communities, leaving home is not the same as going to a hospital 20 minutes from their old neighborhood. It typically means traveling hundreds of miles to Alice Springs and — since treatment is multiple days a week — not coming back.
“Basically, it was to be a one-way ticket to Alice Springs,” says Brown, referring to a diagnosis of kidney failure. “And then people would pass away.”
Western Desert was incorporated in 2003 largely as a response to this issue. By 2010, it had established dialysis units in Alice Springs and the aboriginal communities Ntaria (78 miles from Alice Springs), Yuendumu (182 miles), and Kintore (324 miles). And in 2011, it launched the Purple Truck, which promptly traveled 154 miles to dialyze patients in the aboriginal community Papunya.
Patients still need to come to Alice Springs to start dialysis, says Brown, and Western Desert has not yet been able to set up units in all of Australia’s aboriginal communities. (The issue is largely one of money, as setting up a remote dialysis unit can cost hundreds of thousands of dollars. Alison Anderson, one of Australia’s most influential aboriginal politicians, says there is “nowhere in the world any government would have enough money to put two or three renal machines in every remote aboriginal community.”) But because of the Purple Truck, a trip into town for dialysis no longer has to be a permanent, one-way ticket.
“For all those other communities where there’s nothing, it means from time to time we can get the truck there and give people an opportunity to get home for a couple of weeks or a month, which we try to coincide with things that they’ll really want to be there for,” says Brown.
It’s a start, says McKenzie, and it’s a start that he appreciates. But it isn’t perfect.
“We want to go back to our own country and be with our families not for one week, two weeks, but for good,” he says.
The Purple Truck is an impressive, colorful piece of machinery. The cab is a deep purple, as the name suggests, while the outside of the trailer is painted with aboriginal art — interlocking mixtures of black and red lines, circles and squares, all atop a tan background. The spacious inside resembles a well-maintained doctor’s office, as it contains facilities including dialysis machines, an area for food preparation and a bathroom. And nearly everything is spotless.
It sets out for Mutitjulu on the afternoon of Septembter 24 with McKenzie and fellow patient Colin Nipper so they can attend a meeting to discuss how to use funds from the neighboring national park to help benefit their community. Joining them are Colin’s wife Teresa Nipper and Ronnie and Noel Edmonds, two married Western Desert workers responsible for making sure everything runs as smoothly as possible in the desert. Ronnie works as the renal nurse, while Noel does everything she doesn’t have to. This includes actually driving the truck.
“The most difficult part of the trip is getting out of town,” says Noel, as he begins driving the 11-meter vehicle from Alice Springs to Mutitjulu (the rest of the party follows behind in a white Toyota). Once the truck hits the highway, he explains, the drive gets much easier. It’s avoiding all the signs, tree branches and various other obstacles Alice Springs has to offer that’s hard.
Three hundred miles later, shortly after sundown, he pulls the thoroughly modern hulk of Western medicine into the middle of one of the world’s oldest societies. The incongruity is not lost on him.
“Stone age, space age,” he later says. “And this is part of it.”
Ronnie and Noel spend the first night dropping off McKenzie and the Nippers and sorting out accommodations for themselves. They use the next day to set up the truck and begin dialysis with Colin the day after.
The treatment starts early in the morning to avoid the hottest parts of the day. Noel drives the Toyota along Mutitjulu’s mixture of dirt and paved roads to pick up Colin at his house around 7 a.m., when the community is still mostly silent. He helps guide the practically blind 56-year-old to the car and then takes him back to the Purple Truck for dialysis.
The beginning of the session is a flurry of activity: Ronnie weighs and questions Colin about his health, while Noel makes sure the machine is on track to function properly. They also do what they can to make the process enjoyable.
“Colin, if the nurse is too rough, you tell me, ok?” Noel jovially asks as Ronnie starts hooking him up to the dialysis machine. “And I’ll put the needles in.”
The comment gets a boisterous laugh from Colin, who does not seem particularly nervous about the four-hour session he is about to undergo. He acknowledges that his move to Alice Springs was hard and still claims Yulara as his homeland despite the influx of tourists, but he does not approach his treatment with anything resembling bitterness. Rather, he appears relaxed, genial and occasionally unconscious throughout.
The same is true of Ronnie and Noel. Their easygoing manner with both the patients and each other is a clear indication that, although supervising remote dialysis treatment in the desert is not an activity most people are familiar with, it is something the two of them are quite used to.
“We always wanted to see the Australian outback,” says Ronnie, who has been a nurse for about 41 years. “So that’s what we decided to do.”
After Ronnie gets Colin on the machine, things calm down significantly. He lies back in the chair and closes his eyes, while Ronnie and Noel are left to monitor him and the equipment to make sure nothing goes wrong.
Noel is not quite as lucky the next day, when it is McKenzie’s turn for dialysis. In fact, things get more complicated right when he and Ronnie arrive in the community to find that one of the truck’s compartments was opened overnight.
“Hopefully everything is ok,” Ronnie cautiously says, as the couple begins approaching the truck on the surprisingly cool and cloudy morning.
This hope comes true, as a quick inspection shows that no damage has been done. Noel dismisses the open compartment as “kids just poking their nose in” but is still disappointed that it happened.
“It’s a bit upsetting when they start interfering with such a valuable item,” he says. “If there was any damage, we’d pack up and go home. We wouldn’t come back here.”
Noel relays this same message to McKenzie a few minutes later when he picks him up for treatment. Things proceed similarly to the day before at first — Ronnie and Noel weigh McKenzie, ask him about his health, hook him up to the machine and feed him breakfast (he asks for sugar on his oatmeal, but Noel says he gives him sweetener instead, “so that’s not so bad”) — but the process gets more eventful before long.
“Don’t end up like him,” Noel says, referring to McKenzie.
About halfway through McKenzie’s treatment, the power source that the dialysis machine is hooked up to shuts down, forcing Ronnie and Noel to switch to the generator. They go back to the original source soon enough, only to have it shut down again with about an hour left in McKenzie’s treatment. And right as his session nears completion, it happens for a third time.
Still, Ronnie and Noel never seem too concerned about any of these outages, while McKenzie does not even seem to notice them. They are inevitable and common incidents, things that simply tend to occur when your office happens to be in the middle of the desert.
“Just too much bloody drain on these plugs,” Ronnie says matter-of-factly after the second shutdown. “The power sources are just not reliable enough, are they?”
McKenzie’s treatment gets a more welcome interruption between the second and third power failures, when two young aboriginal boys approach the truck. Ronnie and Noel give them a rudimentary explanation about what they are doing and exhort them to not be on these machines themselves in 40 years.
“Don’t end up like him,” Noel says, referring to McKenzie.
The boys are only on the truck for a few minutes, and it is unclear whether or not they actually absorb anything Ronnie or Noel tell them. They seem a bit confused and overwhelmed the whole time, and between the two of them, the only word they say throughout the conversation is “Yeah.”
Ronnie pragmatically says that the only real way to know if this brief, impromptu lesson had any effect on the children will be to wait and see what happens to them when they grow up. However, she is optimistic that it may have had at least a small impact, if only because they know more about kidney disease now than they did yesterday.
Despite the various and numerous disruptions, Ronnie and Noel still get McKenzie finished with his dialysis right around lunchtime. He appears fine but slightly worn out, possibly because he has just spent the bulk of the morning having a machine clean his blood.
It is a long, draining process to treat what Ronnie bluntly describes as “a shit of a disease.” But McKenzie says he doesn’t mind — in fact, he likes it.
“No dialysis?” he asks rhetorically. He then spirals his hand down toward the floor, indicating that he knows this treatment is better than the alternative.
Administering dialysis is far from the only responsibility Ronnie and Noel take on while out with the truck. This same attitude dominates at the unit in Alice Springs, called the Purple House, where the dialysis room is occasionally the quietest part of the building. Patients hooked up to machines sit calmly sleeping or watching movies, while employees out front deal with a host of different issues: helping patients get groceries, driving them to local banks, making sure they don’t get evicted. Workers recognize that, for many of the aborigines, coming to Alice Springs is equivalent to coming to a foreign country, and they are willing to do what they can to help ease the transition.
“Seeing how disadvantaged aboriginal people are every day makes you want to do something about it,” says Aaron Crowe, who does social support for the Purple House. “I just think that it’s crazy that this is Australia, and we just have these people living in poverty. And it’s really pretty shocking.”
The errands, meals and phone calls are frequent, but sometimes the Purple House just needs to be a spot for the aborigines to go. Amenities such as the cabinet filled with aboriginal medicine and the outdoor fire pit provide a few reminders of home that can be a comfort regardless of whether or not a patient has a session scheduled.
“There needed to be a middle place,” Brown says. “Somewhere where people felt comfortable that it was their place.”
This comfort is on full display during the morning of September 21, when Samuel Nelson, a 49-year-old aboriginal man who moved from Yuendumu to Alice Springs for dialysis in 2006, decides to stop by the Purple House even though it is not one of his days for treatment. He spends the bulk of his time sitting by the kitchen, snacking, conversing and laughing with three of his fellow patients. When asked what he is doing here, he smiles and holds up his mug.
“Just have a little coffee,” he says.
The problems of diabetes and kidney disease among the aborigines are not going anywhere. Western Desert nurse Noeline Murray, who works in Kintore, says dialysis patients are increasing at a rate of about nine percent a year, while Brown says the only reason the main renal unit in Alice Springs is not already overflowing is because some patients skip their treatment.
“If everyone turns up to their allotted dialysis,” she says, “then there’s not enough machines.”
People have not settled on one solution to this problem, just as they have not settled on one cause. Randall would like the aborigines to go back to their older and healthier way of living. Murray would like to go through Kintore’s community store and remove all the unhealthy foods. Maguire would like to see better education for both the aborigines and health care providers.
All would almost certainly be helpful. And on the night of Sept. 24 in Mutitjulu, an event took place that may have been helpful as well. It was nothing complex — just a bonfire and a cookout between some aborigines and some young students from Sydney. The two groups appeared to have very little in common, but they spent the dark, warm evening eating, talking and relaxing together by the fire anyway. And at the end of the night, the students gathered together to sing a song to the aborigines, and when they finished, the aborigines responded in kind.
It was a peaceful moment, a happy moment, one that seemed to be blissfully unaware of the complicated and often shameful history between the aborigines and the rest of Australia that has helped create such an unhealthy population in the middle of one of the world’s healthiest countries.
The solution lies somewhere in there.