Epidemic of Type 2 diabetes in Alice Springs ‘a catastrophe in slow motion’
In the nation’s red centre, a health catastrophe is unfolding and locals are terrified. Dr Cherian Sajiv has worked all over the world but has never seen anything as bad as this.
The click and whirr of almost 40 white machines arranged in rows, filtering and cleansing toxic blood, is the only sound that punctuates the silence within the sterile Flynn Drive renal dialysis unit in Alice Springs.
Most of the patients here lie dozing in reclining chairs under white sheets, large needles inserted into fistulas in their forearms, a surgically-created connection between a vein and an artery that pumps blood through a dialysis machine.
It’s a calm, slick operation as nurses perform their medical ministrations. It has to be. Alice Springs has the biggest proportion of its population suffering end-stage-kidney disease in the world. These are the biggest dialysis units in the southern hemisphere. The youngest patient being treated is 23 years old.
Each year, the patients are getting younger as youth-onset diabetes opens up an aggressive new front in the battle against this chronic disease.
“I don’t think that anywhere in the world, that you would have a small town the size of Alice Springs cater to a huge dialysis population of more than 400 people requiring some form of renal replacement therapy,” says Dr Cherian Sajiv, Director of Nephrology at Alice Springs Hospital. “I have worked in many other places in the world. But nowhere have I seen the kind of incidence and prevalence of kidney disease for such a small population base.”
Numbers bear out what nephrologists like Dr Sajiv are seeing with their own eyes. According to never before published data held by the Australia and New Zealand Dialysis and Transplant Registry, there are 10,234 per million head of population people suffering end-stage-kidney disease in central Australia. Comparing to the worst-hit nations in the world for renal failure, that’s three times the highest recorded rates globally.
“When I first saw these figures I thought they must have been wrong,” said Philip Clayton, acting head of the registry and a senior consultant nephrologist at the Royal Adelaide Hospital. “But I’m confident they are correct. There is just a vast epidemic of kidney disease in the Northern Territory, especially in Alice Springs. “One in 100 people are on dialysis, which is amazing. It’s amazingly high.”
Nurses of decades standing in these clinics have watched with quiet resignation as the numbers rise and the patients grow younger. November among renal staff is a flurry of fundraising and recycling of bottles and cans as the desert heat rises and nurses try to raise enough money to buy Christmas gifts for each and every one of their patients. If they fall short, they’ll buy the gifts out of their own pockets. This year, at Flynn Drive alone, they’re shopping for 190 presents.
“Every year we have a discussion: can we do this?” says one nurse. “Every year it becomes more difficult.”
It’s harder still for the patients. Some families have two or even three generations on dialysis at once.
Petrina Wendy, 39, fears for the future for her daughter, diagnosed with Type 2 diabetes at just five years old. As she sits on a makeshift bed on her balcony in a town camp on the fringes of Alice Springs, Ms Wendy, who has rheumatic heart disease and is on dialysis herself, sheds a quiet tear. “It makes me feel sad for my daughter. We’ve got to stop the kids getting diabetes.”
In the yellow dirt of Ms Wendy’s front yard in Karnte town camp, the pages of an abandoned book of the Old Testament lie flapping in the wind. Inside the house, there are only two pictures on the loungeroom wall. One of them is a small poster, of the kind handed out by missionaries. It displays the hand of Jesus on the shoulder of an Aboriginal woman who sits in a chair. She’s receiving dialysis. A quote from Isaiah 49:13 frames the image: “the Lord comforts his people and will have compassion on those that suffer”.
“If we don’t get help, our kids will end up on dialysis,” Petrina says. “And that’s shocking and sad for families.”
With its large Indigenous population of higher susceptibility and its suite of deep and multi-layered disadvantage, Alice Springs is the epicentre of the nation’s diabetes epidemic. A special case, and yet not, because this is an epidemic that is sweeping the nation like never before. The trends are reflected to a lesser extent all around the country.
‘You’re seeing a whole group of people not able to get out of this cycle. They’ve become the forgotten people.’
“We are at a crisis point,” says Professor Louise Maple-Brown, Deputy Director of research at Menzies School of Health Research and Senior Endocrinologist at Royal Darwin Hospital. “We are witnessing an unfolding epidemic in front of our eyes for a condition that is by and large preventable.”
Aboriginal health executive Leisa McCarthy has been watching it unfold for years. There’s little shock, only grief.
“My experience with family has been over the generations, watching people get sicker and sicker, going blind, ending up on renal dialysis and eventually dead,” says Dr McCarthy, an Aboriginal woman who has held senior positions in policy, management and service delivery in Aboriginal health for 30 years, and holds an honorary research role at Menzies. “It’s becoming this entrenched acceptance that this is how diabetes ends up.”
Dr McCarthy describes a chaotic funding environment that pours money into hospitals and dialysis chairs but fails to fund prevention. As the hospitals fill, families exist in a state of constant trauma.
“It is devastating. Watching it year after year, the only way you can not let it affect you is to become numb,” Dr McCarthy says. “Now, we’re seeing babies that are born large because of type 2 diabetes in the mother.
“People are suffering constantly. We have continual deaths. This is impacting the wellness of the community, it’s resulting in people in constant despair. You’re seeeing a whole group of people not able to get out of this cycle. They’ve become the forgotten people.”
In the dry summer heat outside the entrance to the John Flynn Memorial Church in Alice Springs’ Todd Mall, children are gathered, drawing on the concrete with chalk. Their parents are inside, threading kangaroo meat and vegetables onto kebab sticks as teenagers prepare salads for a feast.
Shiree Mack is one of the women delivering central Australia’s first diabetes prevention program, a joint project of the Menzies School of Health Reseach and Central Australian Aboriginal Congress, known as Merne Mwerre Artweye Areye-ke. She worries for the children.
Gestational diabetes numbers have doubled nationwide in the past ten years. A recent study from Menzies School of Health Research reported a ten-fold increase of type 2 diabetes in pregnancy in the NT in the last 30 years and Central Australian numbers top the world for type 2 diabetes in pregnancy, a condition with an even greater risk for mother and child than gestational diabetes. Ms Mack had gestational diabetes with one of her pregnancies, and remembers vividly being told her child would later be at heightened risk of type 2 diabetes. She now wants to break the intergenerational cycle.
“I was scared for my child,” Ms Mack says. That is the first memory of the feeling that came through. It was fear,” she says. “I didn’t want that for my kids.
“I want to just plant that seed of change. It doesn’t have to be like this.”
The Merne Mwerre Artweye Areye-ke pilot current has eight children aged between six and 11 enrolled and their extended family members. The program is aimed at preventing diabetes, early detection and management of obesity, and identifying diabetes risk in children. It’s adapted from a successful prevention program, known as Tribal Turning Point, trialled in First Nations communities in North America.
Patients like Julie Cline, a former diabetes educator herself, also want to spare the children. Inside the hospital’s renal clinic, Ms Cline, who has diabetes. has lost count of the days. A whiteboard above her bed marks her admission date; it’s been over seven weeks now.
The grandmother, who landed in hospital after skipping a dialysis session at the overloaded Gap Road dialysis unit after which she developed rapid complications - cuts a vulnerable figure propped up on pillows encased in starchy bright-white linen. She feels the weight of not only her own mortality, but also that of the sickness engulfing Alice Springs.
“There’s more and more diabetes, more and more renal patients,” Julie says. “I’m worried because I think everything will just collapse. We need more dialysis chairs, but chairs cost a lot of money and people want to go home to their communities. They wait and wait and wait for chairs in their communities. And some of them pass away. They die, just waiting for chairs.”
“Renal is really hard, it’s a hard life,” Julie tells The Weekend Australian from her hospital bed in Alice Springs’ Hospital. “You’re left alone, no family is there except the machine, that’s all. If your blood is not functioning well because of your sickness you pass away, you die.
“And I’ve seen a lot of those people.”
Nephrologists openly admit that their services are already overwhelmed. “We sometimes have to resort to deferment of dialysis, things like that, when too many patients turn up for their scheduled treatments, and there are not enough chairs,” says Dr Sajiv. “We are just surviving on a day to day basis because people miss their treatments. We wouldn’t be able to accommodate all patients on dialysis if everyone turned up for their scheduled treatments.”
Despite the loving care of staff, a dialysis unit can be a desperately lonely place, especially for people like Julie Cline, so used to the embrace of a large family. But Ms Cline’s family is diminished now, victims of the rampaging national type 2 diabetes epidemic which is hitting the Northern Territory, the Pilbara and Far North Queensland the hardest but also destroys lives from east coast to west, and everywhere in between.
Ms Cline’s children were both diagnosed with type 2 diabetes at a young age, and developed complications quickly. They both died at age 42. Her daughter essentially chose death over a life on dialysis.
“Now I’m left behind,” Ms Cline says. “I’ve got no one to look after me. I’ve cried so hard. I’ve cried really, really hard.
“All our families used to be really, really good happy people, you know, and never had anything wrong. And then suddenly, all of a sudden, they just got sick with this problem.”
Whether they be mothers, executives, endocrinologists, nephrologists or paediatricians, there is universal concern for the children who are now being diagnosed with type 2 diabetes as young as the age of 4. Paediatricians are newly diagnosing type 2 diabetes in teenagers or primary school children on a weekly basis at a minimum.
It’s a more aggressive disease in children, and emerging studies suggest many of these children can expect to be in end-stage kidney failure within 20 years.
You will not find this phenomenon in any medical textbook - trends like this have never been documented anywhere else in the world.
“The emergence of type two diabetes in children in Central Australia is a catastrophe,” said Alice Springs hospital, Acting Director of Paediatrics at Alice Springs Hospital Dr James Dowler.
Acting head of paediatrics at Alice Springs Hospital, James Dowler, says the emergence of type two diabetes in children in Central Australia is a "catastrophe". "It's going to ruin lives, it's going to impact future generations". Picture: Liam Mendes
“There are a number of killers of young people in Central Australia, in these low socio economic, rural and remote demographics, and diabetes is one of them,” he said.
“Many kids see that as their future. They’ll see their mum on dialysis and then have that expectation that this is going to be their life, and as a teenager that’s met with a lot of hopelessness, and it’s really heartbreaking.”
On the other side of the hospital, patients lie intubated in ICU. This week was a spate of strokes. As ICU chief Paul Secombe approaches the bedside of a man in his 50s lying mechanically ventilated, he knows the task of resurrecting the tissue surrounding the part of the brain that has stroked - what medics call the penumbra - will be challenging. The man, who has diabetes, didn’t turn up to work the day before. Concerned co-workers broke into his apartment and found him unconscious on the floor.
“The patients that we see here with stroke tend to be in their 40s and 50s, rather than in their 60s and 70s, as I’ve seen in other tertiary units,” Dr Secimbe says. “The risk of stroke increases with diabetes because all your blood vessels calcify as part of the process that’s related to having high sugar in the blood. As the vessels calcify, they become stiffer and less elastic, and they also start to narrow. It affects every blood vessel.
“This man’s prognosis is extremely guarded because of the size of his stroke. It’s our job today and over the next subsequent days to maximise the recovery of tissue. But diabetes will make that harder too.”
In the next bay a man from Tennant Creek lies in a critical condition, his body battling severe necrotising pancreatitis. The acute illness was made all the more so by the fact that his diabetes had already damaged his kidneys, which quickly collapsed amid the inflammatory process and stopped working entirely. “I am be hopeful of getting him through,” Dr Secombe says. “Assuming that nothing else happens.”
As Dr Secombe leads The Weekend Australian around the beds of his ICU that stands as the acute endpoint of this slowly building health catastrophe, he issues a blunt assessment.
“The burden of diabetes here in this intensive care unit is heavy, it’s almost insurmountable at times. If this trajectory of disease continues to escalate, we will run out of ambulances to put people back together. We work closely with our primary and public health care colleagues here, but they are under-resourced.”
“I think if we were seeing the outbreak of chronic disease that we see here, amongst the nation’s most vulnerable population, in Sydney’s North Shore or Melbourne’s Toorak, there would be outcry, there would be money poured into it,” Dr Secombe says. “I think if the rest of the country truly had a concept of the burden of disease that is in this part of the world, the fact that we have more dialysis dependent renal disease than anywhere in the world, that we have the largest dialysis centre in the southern hemisphere, that we have children developing type 2 diabetes, I would hope that they would be truly shocked. Part of me wonders whether because it’s 1500 kilometres away from the closest city, it’s easier forgotten. I fear for the future of these patients in many ways, especially the young people.”
Out on the baking streets, 59-year-old Jacob Spencer sits in his wheelchair on the footpath, waiting for family in the afternoon sun. There’s no other town in Australia where you could walk the streets and be highly likely to see people with amputations. Others of the cruel disabilities diabetes can trigger are less obvious. Blindness is also commonplace.
As Jacob sits enjoying the orange-tinged afternoon light, his jeans hanging loose over his amputated right leg, he laments the past, and cannot be persuaded there is hope for the future.
“Sugar, this is where it all started,” the Walpiri man and stockman’s son says. “My people in the old days didn’t touch all those things. They could walk from here to Western Australia.
“I don’t know the answers. You get a new government every five years and nothing’s been done. Nothing’s been put in place. You can’t stop nothing. They don’t listen to what we say.
“You come back and see me after 40 years, it’ll still be the same. We’ll still be fighting for our health.”
“It’s a bleak outlook that Shiree Mack is not prepared to accept.
The shopping trips to learn about healthy food, the cook ups and the badminton games are a small start, but it’s something. Shiree is convinced local programs, developed from the ground up with the community, will be effective where top-down bureaucratic policies have failed.
‘It’s an ongoing battle,” she says. “We’re still trying. We manage to just keep the kids active. We keep talking about it, breaking down that shame and stigma.”
“Now governments have to support local people to deliver in their own communities. The capability is there. They need to recognise the families’ strengths. Because they’re doing it. The strength is there.”
