The diabetes epidemic: a crisis in slow motion

Becoming an amputee at 44 was not the life Eric Fanene ever imagined. But the creep of this disease is often silent. He is one of many thousands of Australians falling through the gaps of our health system.

Diabetic amputee Eric Fanene at the World Gym in Penrith where he regularly trains. He lost part of his leg when a foot infection he’d ignored turned gangrenous. Picture: Jane Dempster

It has been three years since Eric Fanene, 47, lost his right leg, but still he turns up every day to World Gym in Penrith, on Sydney’s outer western fringe. Even when diabetes was ravaging his body, the disability worker battled on, ignoring the signs, still lifting weights.

As a foot infection he dismissed as minor turned gangrenous, the Samoan-born man had no idea of the extent of the danger.

Becoming an amputee at 44 was not the life this young man ever imagined. But the creep of diabetes is often silent, even when blood glucose levels hit life-threatening highs.

“I thought I was just having a fever, that I’d just sleep it off,” Fanene says. “I said to the doctors: ‘I don’t know what that smell is.’ They said: ‘That’s gangrene. We’ve got to amputate now or else you’re going to die.’ The ambos told me if I’d had another nap it would have been my last.”

Fanene is one of many thousands of Australians falling through the gaps in the nation’s health system, which is failing to detect or prevent type 2 diabetes.

Hospitals are overloaded – in some tertiary centres in major cities doctors estimate as many as one in three admissions has diabetes.

Every two hours somewhere in Australia, a patient with diabetes has a lower limb removed as a direct result of diabetes-related foot disease, according to Diabetes Feet Australia. Four in five of these amputations are preventable.

Sian Graham – chair of the Aboriginal and Torres Strait Islander Advisory Group for the Diabetes Across the Life Course: Northern Australian Partnership – was diagnosed with Type 2 diabetes herself at 30 and now worries for the future elevated diabetes risk for her daughter, Takaia, age 4. Sian is also with daughters Tanesha, Tshami and Tia, grandchild Malakai Milpurr and mother Maria Nickels. Picture: Rebecca Parker

From the Torres Strait to southern Tasmania, and from the east coast to the west, the diabetes epidemic is causing mass morbidity and prematurely claiming lives.

One in 10 deaths is attributable directly or indirectly to diabetes. It is the leading cause of preventable blindness, amputations, end-stage kidney disease and cardiovascular disease, with risk increasing by socio-economic lower status and geographic remoteness.

Among doctors, a fierce battle over how to combat the alarming rise in cases is intensifying as the nation’s dietary guidelines are redrafted. Low-carb diets are highly effective, but they’re not universally recommended. Most doctors still recommend those with diabetes eat according to the standard national dietary guidelines, under which wholegrains sit at the top of the food pyramid.

James Muecke, who has been lobbying for changes to dietary guidelines. Picture: Matt Turner

Anti-sugar campaigner Dr Peter Brukner.

“In short, our food is killing us,” says ophthalmologist and former Australian of the Year James Muecke, who has been campaigning for change, particularly on dietary guidelines, which are currently being reviewed.

“We have an environment where junk food is cheap, alluring, readily accessible and in many cases addictive. The current version of our guidelines has no relevance for the prevention or management of type 2 diabetes.

“The number of people with diabetes continues to rise inexorably. We are headed for disaster, we clearly need action.”

The Australian Diabetes Society recently has endorsed a therapeutic carbohydrate reduction dietary approach, following in the footsteps of the American Diabetes Association and its European counterparts.

That’s welcome news to doctor and author Peter Brukner, who runs the charity Defeat Diabetes and reversed his own prediabetes.

“Basically what diabetes is, it’s a disease of carbohydrate intolerance. So basically your body no longer tolerates carbohydrates because it’s become insulin resistant,” Brukner says.

“It’s so obvious it’s ridiculous, that if you’re intolerant to something, if you’re an alcoholic, you don’t have alcohol. If you’ve got coeliac disease, you don’t have gluten. If you’re diabetic or prediabetic, you don’t have carbohydrates.”

Now, Big Food is under fire in federal parliament as teal MP Sophie Scamps, a general practitioner, who is sitting on the diabetes inquiry, pursues a private member’s bill to ban junk food advertising to children.

“Our children are being simply bombarded with junk food ads,” Scamps says. “They are being preyed upon by junk food companies who are profiting from the lifelong ill-health of our kids.”

But whatever the dietary approach or commercial determinants, this is essentially a disease of poverty.

On the ground in the nation’s epicentres of chronic disease, little is spoken of these matters. In Central Australia – where four out of 10 people have type 2 diabetes and almost one in 100 has end-stage kidney failure – even the mildest-spoken doctors call this epidemic “a disaster”.

The endocrinologist in charge at Alice Springs’ only public hospital describes the surgical ward there as the “wild west”, with general surgeons performing an ever-rising number of amputations.

In Alice Springs, as in western Sydney, among those living with diabetes’ most devastating impacts, there’s a quiet resignation.

“I don’t look back with regrets about my leg, I’m just sort of thankful they got to it when they did,” Fanene says. “I’ve heard of stories where people had sepsis and all that type of stuff where they’ve actually lost all their limbs.”

Such is the relative nature of gratitude in the heartlands of Australia’s diabetes epidemic, where income and postcode load the dice against individuals who increasingly are filling hospitals with escalating complications.

“We are at a crisis point,” Menzies School of Health Research deputy director (research) and Royal Darwin Hospital senior endocrinologist Louise Maple-Brown says. “We are witnessing an unfolding epidemic in front of our eyes for a condition that is by and large preventable.”

On purely economic terms, the diabetes epidemic is a fiscal catastrophe. The prevalence of people living with type 2 diabetes has tripled in Australia between 1990 and 2019 – a growth rate six times that of the population.

The extraordinary expense and sheer logistics of adapting the health system to a disease that doctors describe as “the true pandemic” is rising in real time. Conservative estimates of the cost of type 2 diabetes to taxpayers is close to $15bn a year, much of that poured into hospitals.

By 2050, the cost to the nation from type 2 diabetes is forecast to be $45bn a year. To put that in perspective, the entire federal government health budget in 2023-24 is just more than $100bn.

“Unless we take urgent action, the impacts of type 2 diabetes, including debilitating and costly complications, will overwhelm our health system,” Diabetes Australia chief executive Justine Cain says.

But a solution is far from simple on the suburban front lines, where deep and growing social and economic inequalities are a root cause of this epidemic, and the people who need preventive healthcare the most cannot get access even if they can afford it.

At a western Sydney multidisciplinary public hospital clinic for those with obesity and metabolic disorder, the waiting list is between three and four years long.

Only 15 patients a year can be admitted for bariatric surgery, and though clinicians do their best to treat people within a time frame of a year, when they discharge them to make way for those waiting, the breakdown in primary care leads doctors to feel they are simply “pushing patients off a cliff”. And so the hospitals continue to fill.

“The rates of diabetes in hospital are one in four, the rates of obesity are probably higher but we don’t even record it because just everyone seems to have it,” University of Sydney conjoint senior lecturer and endocrinologist Kathryn Williams says.

The NSW government chose Penrith as the location to open the nation’s first multidisciplinary public obesity service in 2016, concerned by the region’s much higher rates of early deaths from cardiovascular disease.

As obesity levels sit stubbornly high – Australia’s rates are second only to those in the US – state governments continue to pour billions into new hospital buildings. The rooms of the shiny new wings are larger now to accommodate much wider beds. Ceiling hoists must be erected for lifting patients, an exercise that involves at least four staff members.

The University of Sydney’s Kathryn Williams, who says: ‘There’s real disability out there’. Picture: Jane Dempster

Some patients of metabolic clinics can make it to the hospital only on a stretcher via a bariatric ambulance; others are virtually permanently bedbound at home. Doctors are caring for patients with a body mass index as high as 80. The system churns on, in a slow-moving crisis, but doctors say it’s reaching a tipping point.

“If you get a patient with a rare cancer, that’s what freaks us out,” Williams says, speaking in her academic capacity. “It’s like the volcano erupting versus 100 people dying in India from a train accident – which one do we care about more? It’s become like we’ve just so gotten used to this situation of widespread chronic disease that we just expect it to happen. I’m almost in a bit of a state of panic.”

Some of Williams’s patients are virtually bedbound and must be treated by telehealth. If they come to hospital it’s on a stretcher.

“There’s a lot of loneliness, there’s a lot of abandonment,” Williams says.

“If you’re that large, you’re incredibly isolated, there’s virtually no outside world. You can’t get around easily. I have some patients that have to actually shower after they’ve been to the toilet just because they can’t wipe themselves properly. There’s real disability out there.”

Senior doctors in Campbelltown, in southwest Sydney, are similarly despairing of the trends and the lack of resourcing for diabetes prevention. The NSW government recently has opened a new wing at Campbelltown Hospital, but there has been no increase in diabetes educators. A part-time nurse is expected to attend to many hundreds of patients.

“We don’t have the sorts of resources that we should have,” says David Simmons, distinguished professor of medicine at the Western Sydney University Macarthur Clinical School and head of Campbelltown Hospital’s endocrinology department.

“We now have all these extra beds and the increase in diabetes services has been very limited. We don’t have the staff to visit patients on the wards. We have a large proportion of outpatients. Many of our patients can’t afford to go to anyone private, they can’t afford the out-of-pocket costs. We don’t have the private specialists here even if they could.

“People often go home without being seen by one of the diabetes team and therefore they don’t have a plan for their diabetes, making them more likely to be admitted.

“We’re the forgotten diabetes hotspot. This is the real pandemic. This is the pandemic that we’re trying to deal with and essentially it needs a properly funded, structured approach based on evidence. We don’t have a district diabetes auditor to know what’s really going on. That’s not the way you deal with a pandemic. People are losing their lives either because they’re not accessing the care or the care isn’t being delivered to the level that it needs to be. And that is because primary and secondary care are not working together.”

A few blocks away in the sprawling southwestern urban centre, Campbelltown GP Ken McCroary is trying to stem the tide of patients that end up in hospital, but he also knows it’s a losing battle.

In western Sydney, as in countless pockets of capital cities and regions everywhere, primary care is on a knife’s edge. Since September last year in Campbelltown, 24 general prac­tices have closed, with one more set to close in December and a further five at risk.

The patients who turn up to the practices that remain often cannot afford gap fees or even to buy their medications.

“It’s a national shame that we don’t value the importance and understand the cost efficiencies of adequately funding primary care,” says McCroary, chairman of the local GP group Sydney South West GP Link.

“What happens is people suffer, they delay their presentation, they present later, they present with more significant complications, they don’t get their preventive care managed like they should.

“With food prices, petrol prices, mortgages rising, rents increasing, people have less disposable income, so health has now become a discretionary spend and they can’t afford it to be a priority any more. Instead of health being an absolute necessity, now it’s in the pile with clothing, shelter, shoes and food.”

On just one November afternoon McCroary sees about a dozen patients, some of them recently hospitalised because they couldn’t afford essential medication. On the afternoon The Weekend Australian speaks with him, nine of his patients have stopped or delayed taking their medication because of the cost-of-living crisis and inadequate Medicare rebates.

One diabetic patient missed her diabetes and blood pressure medication and had been admitted to hospital, having had a stroke, together with chronic renal failure.

Another diabetic patient was hospitalised after failing to take vital heart medication and had to be admitted to have a pacemaker inserted.

And yet another patient, a local labourer, stopped taking his medication because he couldn’t afford it, and ended up with blurred vision and peripheral neuropathy while at work.

All of this is despite significant reforms by the federal government to make medicines cheaper.

Some of the patients who are struggling to access preventive care are expectant mothers. The explosion in prevalence of gestational diabetes is sparking rising alarm as diabetes firmly establishes itself as an intergenerational disease.

But it isn’t only gestational diabetes – an increasing number of mothers now already have type 2 diabetes when they become pregnant, as the age of diagnosis plummets. That puts children at higher risk of contracting type 2 diabetes, and they tend to have a more aggressive form of diabetes that is harder to treat.

“From my learning as a doctor, it was always grandmas and grandpas who got type 2 diabetes,” Alice Springs Hospital acting head of pediatrics James Dowler says. “It would be something that boiled or bubbled under the surface. And slowly you increased treatment and management over a decade or a couple of decades.

“But what we’re seeing now is over even a period of six months to one year, a child can go from having normal sugars and no signs of diabetes, but because we know they’re in a high-risk group we will screen them, and then six months later they have severe diabetes needing insulin, needing admission, and causing health complications.”

On top of the diabetes risk in later life, there are significant risks to the baby when a mother has type 2 diabetes in pregnancy, including congenital malformations. Gestational diabetes also makes a mother more likely to get type 2 down the track.

From her home in Cranebrook in the outer western Sydney commuter belt, retired nurse Marilyn Alston wonders if life would have been different if she had stayed in Maroubra, where her children spent their toddler years.

In the southeastern beachside suburb, with its open space, ready access to fresh food, sparse fast food outlets and greater social mobility, diabetes rates are half that of Penrith, where two-thirds of people live with obesity.

Diabetic Marilyn Alston in front of some of the multitude of fast food outlets in the Penrith LGA which she says triggers her bad eating habits when she sees them driving past. Picture: Jane Dempster

In Penrith, banners fly from the five McDonald’s restaurants within a 3km radius advertising ultra-cheap deals for every day of November – on this day it’s $2 for a Big Mac. Alston, a type 2 diabetic who has struggled with obesity since menopause, openly admits it can be impossible to resist fried food’s allure.

Alston chose to move her young family to Penrith decades ago, lured by cheap housing and the promise of prosperity. But by her 40s the family curse of diabetes came to bear upon her when a diabetes diagnosis was heralded by a heart attack.

“I basically progressively in the last 20 years put on a kilo a year,” Alston says. “The diabetes came as a package. I had a heart attack, high blood pressure, high cholesterol and diabetes. I’m insulin resistant. It’s like a big predisposition, your family history and where you live. You put all your ducks in a row and guess what? Diabetes is among them.”

Alston’s mother had diabetes, and now Alston’s children do, too. Her daughter, aged 46, had severe gestational diabetes with both pregnancies and is now dependent on renal dialysis to stay alive.

“Both of her babies were born prematurely,” Alston says. “Her blood pressure was through the roof and they couldn’t get it under control. Her kidney function was just non-existent. Both her hands and her feet were so swollen.

“She doesn’t even remember being in hospital. It was a miracle she survived through both her pregnancies, let alone having healthy babies.”

A recent paper analysing the Penrith food environment in the Journal of Urbanism found there were 220 “non-healthy” food outlets in the Penrith local government area – 84 per cent of the total – and 42 “healthy” food outlets.

As the push against ultra-processed food and junk food advertising gathers pace, and as the policy focus turns to remission, steep barriers for individuals to regain their health remain.

“There is a crisis on the ground,” Maple-Brown says. “The mindset needs to change on this. Really, prevention is what is missing, at the grassroots.”

additional reporting: liam mendes