The phantom visits at night. It claws up the nerves of his left stump. Sends a shock of electricity through his hamstring.
James Gott jolts awake. “Get the hell out of here,” the 75-year-old grandfather yells at the vacant space below his left knee.
It doesn’t listen.
Sometimes he swallows Tylenol 3s to beat back the pain. Tonight, he thumps the limb against his mattress over and over, like he’s trying to put out a fire. In 30 or 40 seconds, he snuffs the phantom and tries for sleep. He knows it isn’t real, knows that the sensation emanating from a leg that was cut off in a Winnipeg operating room 16 years ago is all in his mind. His right leg, which eventually suffered the same fate, mercifully doesn’t act up. But the phantom pain on the other side is somehow etched on his neurons along with vivid memories of a crude surgical procedure that has become a common defence against the epidemic of diabetes plaguing First Nations.
For the health care system, it was all very efficient: a quick diagnosis, swift surgery, some rehab. Then out the door to fight the phantom alone. But for Mr. Gott, and the thousands of other First Nations peoples who’ve had their legs amputated to ward off lower-limb infections brought on by diabetes, limb loss takes a lasting mental and physical toll that is, in most cases, entirely avoidable.
Researchers consider 85 per cent of all diabetic amputations preventable with adequate medical screening and care. The diabetic amputation rate, then, is a useful barometer of diabetes care. Where amputations are high, care is lagging. New data from the Canadian Institute for Health Information (CIHI) provides a first-ever national snapshot of these rates and indicates that the quality of diabetes care is highly uneven across the country. Between 2021 and 2023, the age-standardized diabetic leg amputation rate in Mr. Gott’s home province of Manitoba, for instance, was roughly double the national rate of nine per 100,000, and nearly four times that of Quebec, which held the lowest rate at five per 100,000.
The disparities widen when gender and socioeconomics are factored in. The leg amputation rate for diabetic men was more than double what it was for women. Manitoba’s lowest-income neighbourhoods had a leg amputation rate of 56 per 100,000, compared with three per 100,000 in Quebec’s wealthiest neighbourhoods. People living in Manitoba neighbourhoods with low high-school completion rates were 10 times more likely to have diabetic leg amputations than those in B.C. with high rates of high-school completion.
The CIHI report does not provide a breakdown by Indigenous identity, but it did look at “very remote” communities, a category that includes many isolated First Nations, and found that the leg amputation rate is seven times higher than it is for urban centres nationally. That difference is far more pronounced in select provinces. Ontario’s age-standardized diabetic leg amputation rate is about 22 times higher in very remote communities compared with urban centres. In B.C., the same measure is about five times higher in the most isolated communities.
The findings bolster studies focused on single provinces that found First Nations with diabetes face amputations at rates far higher than the rest of the population – between three and 71 times higher. The causes involve a complex clash of biology, colonial history, modern life and Canadian health care. On paper, the solutions appear simple – conduct regular foot inspections of people with diabetes and treat foot wounds aggressively – but the inertia of Canadian health care is an unwieldy tanker to turn.
“The situation reminds me of what the airline industry calls the tombstone mentality, where nobody will bother to redesign a problem plane until there are tombstones in the ground,” said David Kopriva, a vascular surgeon in Regina. “It’s the same with diabetes. We’re not dealing with it very well. Only what we’re counting is not tombstones but prosthetic limbs.”
The morning after his battle with the phantom, Mr. Gott twists himself sideways in bed until his legs, abbreviated just below the knees, hang over the side. He pulls socks with rubber gaskets at the bottom over his stumps. “Like putting a condom on an elephant,” he growls, as he shimmies his limbs into carbon-fibre sockets atop his $14,000 prosthetics, paid for by the government only after he “raised hell” with bureaucrats.
Now come the acrobatics. He launches his torso up with his arms and rocks back and forth on his feet until he finds his balance.
He glances out the window of his 10th-floor apartment to a line forming outside the Liquor Mart across the street. He scans the crowd for familiar faces with his binoculars, making a mental note to needle them later. Mr. Gott has been sober since 1980, the year he briefly lost his eyesight during a factory shift. A subsequent blood-sugar reading was so high his doctor ordered him to visit the nearest ER for treatment of Type 2 diabetes, a mystifying diagnosis.
“I’d never really heard of it before,” he says.
At the time, physicians throughout North America were noticing a sudden spike in the disease among First Nations, upending a commonly held belief that they were immune. A 1937 Canadian Medical Association Journal article stated “Indians are not subject to diabetes,” and cited physical exams and urinalysis of 1,500 First Nations peoples in Saskatchewan where no sign of the condition emerged.
In the 1970s, a study published in the Lancet would shatter that illusion. Researchers found that nearly half of Arizona’s Pimas had diabetes – the world’s highest recorded prevalence. Canada had its own Pima moment in 1997 when researchers declared that one in four people in Sandy Lake First Nation, located in Northwestern Ontario, had the chronic disease. At the time, it was the world’s third-highest recorded diabetes rate.
Sandy Lake First Nation, a fly-in community on Ontario’s Severn River, recorded alarming rates of diabetes in the 1990s.
As diabetes surged, so too did complications. In 2002, the Manitoba government issued a report showing First Nations peoples in the province were being treated for diabetes at four times the rate of other Manitobans, but that their prevalence of diabetic amputations was 16 times higher. The rate of diabetic amputations for First Nations peoples in one regional health authority, Marquette, was 71 times higher than for other residents. In 2022, the Sioux Lookout Health Authority, located in Northwestern Ontario, reported that its First Nations residents were being amputated at a rate five times higher than other Ontarians.
Such findings, along with a federal government call for more equity-based diabetes statistics, persuaded CIHI to launch the first national report on the issue.
The CIHI numbers suggest that a diabetes patient’s likelihood of losing a limb depends largely on where they live. Rates are highest among places with low income, low high-school completion and high isolation. Provincially, diabetic leg amputations were most prevalent in Manitoba and Newfoundland and Labrador, while being least common in B.C. and Quebec.
But data gaps remain. The report states that hospitals don’t routinely collect race and ethnicity data, limiting analysis of First Nations figures. CIHI has collected more localized figures but has yet to organize them in publishable form.
Mr. Gott says it’s no particular mystery why these “very remote” communities with few economic prospects have been ravaged by diabetes. He was born in Sapotaweyak Cree Nation, 400 kilometres northwest of Winnipeg, and has vivid memories of his dad carrying 100-pound bags of flour, the foundation of their starch-heavy cooking. “We lived on bannock and potatoes,” he says. “We never had much choice due to our family size, seven kids, and my dad worked cutting pulpwood in the bush, which didn’t bring in much.”
Northern grocery stores were no better. Many were glorified convenience stores, he said, stocked with salty, sugary processed foods.
Today, as in Mr. Gott's youth, it can be a challenge to get fresh vegetables to northern stores like this one in Fort Severn, Ont.Colin Perkel/The Canadian Press
He spent his teens in rural residential schools and boarding homes in Winnipeg. His parents died in separate car accidents when he was 22. “I never knew my parents,” he says. “The residential system took that from me.”
Mr. Gott remained in Winnipeg, found a partner, fathered two kids and laboured for three decades at a steel company and a wire and cable manufacturer, where he was working the day his eyesight failed briefly.
The subsequent diabetes diagnosis persuaded him to kick alcohol and starchy foods. His blood sugar remained stable without insulin for years. But in 2008, complications reappeared. “I got an ulcer on the bottom of my left foot,” he says. “Eventually, it broke open. You want to smell rotten meat, it was overpowering.”
Hyperglycemia can destroy the nerves and blood vessels of the feet, numbing all pain and impairing the body’s ability to heal. In interviews with The Globe and Mail, doctors described diabetes patients who had suffered horrendous burns and cuts to their feet and felt nothing. One family doctor described encountering a 32-year-old man whose diabetic foot was so badly decayed that a surgeon was able to pull off his toes during surgery.
Most diabetic ulcers can be treated as long as health care providers focus on limb preservation rather than limb removal. The process can be onerous: repeated debridements (removal of dead tissue), specialized antibiotics, dressing and boots that offload pressure from the infected area. Amputation, by contrast, can seem easier.
“There was this perception among a lot of the surgical community, and among some of my own colleagues, that it was easier to just cut off the leg and we’ll just have patients move on with their lives,” says Ahmed Kayssi, a Toronto-based vascular surgeon and wound care physician at the University of Toronto. “This idea that you can cut off a leg and move on, well, that’s just not true. They become completely dependent on the health care system.”
Mr. Gott leans on the wall while waiting for an elevator. Managing pain is a constant struggle; Tylenol 3s sometimes help.
At Winnipeg’s Health Science Centre, Mr. Gott says he was never given an option to save his left foot. Somehow, he remained upbeat. They operated on a Good Friday, cutting a few inches below the knee. Lying awake, Mr. Gott felt nothing but the saw’s vibrations, glimpsed nothing but one brief fountain of blood. It was over within an hour.
The darkness set in afterward. The phantom paid its first visit. An old left toe injury began to throb mysteriously. Three or four nights after the operation, a nurse came to check on him. “Get lost,” he told her.
She replied with a slap to the back of his head.
What happened to the guy who came in here full of piss and vinegar, he remembers her saying.
Tough love was precisely what he needed. He worked through a painful rehab process that got him up and walking on an archaic prosthetic made of steel pipe. More mobile with each day, he went north looking for work. He ended up in Nisichawayasihk Cree Nation, where his wife had family.
The decision, he now believes, cost him another leg.
Nisichawayasihk Cree Nation sits along the northern bank of Footprint Lake, an eight-hour drive due north of Winnipeg.
Deputy Chief Marcel Moody, 62, grew up here and remembers a care-free childhood gravitating around the water – swimming, fishing, playing.
“The shoreline used to be our playground. Just look at it now,” he said, gesturing to the vacant lake where tree stumps ringed the water’s edge like crooked teeth. Massive regional hydro development in the 1970s made the water undrinkable. Many locals no longer eat anything fished from the lake.
When Mr. Gott moved to the First Nation, he was struck by the degree of sickness. There were countless people with diabetes and a few fellow amputees.
Three years into the northern gig, he arrived home on a cold winter’s day, took off his boots and kicked his foot against the wall to remove some snow. “The whole foot, it just collapsed,” he says. “It caved in.”
He sought care, but neither the local nursing station nor the Thompson hospital, about an hour away, knew what to make of it.
Eventually, he got an appointment with an orthopedic surgeon in Winnipeg. He had a clear case of Charcot Foot, a weakening of the bones owing to nerve damage. If northern health care providers had med-evaced him to Winnipeg sooner, doctors could have avoided an amputation, the surgeon told him. Now, it was too late. Today, his right stump is slightly longer than his left.
“I lost that limb because of the health care system up there,” Mr. Gott says.
The Nelson House Nursing Station caters to patients in Nisichawayasihk, where Deputy Chief Marcel Moody, who grew up here, sees the state of health growing worse.
The quality of health and health care has only declined since, Mr. Moody says. Three days a week, a bus takes locals to the hospital in Thompson for dialysis. The regional diabetes rate is 20 per cent, double that of any other area in the province.
Diabetes portends such grim complications that a diagnosis carries its own unique trauma in some communities. “I provide a diabetes diagnosis the same way I would provide an HIV diagnosis because there is so much trauma around it,” said Jade Young, a family doctor who works in Garden Hill First Nation, a fly-in community 600 kilometres northeast of Winnipeg where she says roughly 70 per cent of her patients have diabetes.
That trauma, along with the short-staffed state of health care in many First Nations, keeps people from seeking out a diagnosis. The three nurses working at the nursing station in Nisichawayasihk have been swamped for years, routinely closing the facility to everything but dire emergencies. This summer, the chief and council declared a state of emergency over the staffing shortages.
“I feel like I’m failing all the time,” says Lynda Wright, Nisichawayasihk’s health director. “People are sicker. Kids are coming in younger.”
Carl Young has diabetes and spent years pressing for help with a festering toe, which a Winnipeg surgeon managed to save.
Diabetes patients can deteriorate precipitously during these shortages. If they can’t get seen for scheduled bloodwork or foot treatment, they can wait months for another appointment. Carl Young, a community recreation worker with diabetes, says he visited the nursing station and the Thompson hospital repeatedly for three years seeking treatment for a festering toe wound before a doctor referred him to a Winnipeg orthopedic surgeon, who provided immediate debridement and a walking cast. “The doctor down there said my foot should have been referred to him when it first happened because I nearly lost it,” Mr. Young says.
Such delays are a common outcome of a disorderly approach to diabetic foot health in most provinces, southern-based surgeons say. If a person has cancer, they generally enter a dedicated cancer stream, seeing cancer surgeons and oncologists. If someone has a limb-threatening diabetic foot ulcer, they can be referred to any of a dozen different specialists, such as endocrinologists, plastic surgeons, vascular surgeons, podiatrists and infectious-disease experts. By the time they get to the correct caregiver, the wound is often beyond repair.
“The preventative care that’s needed is lacking and disjointed pretty much across Canada,” says Charles de Mestral, a vascular surgeon and University of Toronto health researcher focused on limb preservation strategies.
He said the solution can be simplified to two issues: screening and treatment. Diabetes Canada recommends that people with diabetes should have annual foot examinations. While Alberta, Nova Scotia and New Brunswick all have comprehensive foot screening programs, most provinces don’t, he said.
On the treatment end, the United States has had success setting up limb preservation clinics. Ontario has set up several such teams under a new Lower-Limb Preservation Strategy. In Alberta, Calgary’s Zivot Limb Preservation Centre has helped reduce major amputations in the region by 45 per cent.
Calgary's Peter Lougheed Centre is home to the Zivot limb-preservation clinic, which treats people with foot ulcers and infections.Todd Korol/The Globe and Mail
In 2013, Saskatchewan set up a similar one-stop shop at St. Paul’s Hospital in Saskatoon. Over the next 10 years, annual patient visits doubled to about 5,000, while major amputations dropped by half. Minor amputations of toes or parts of the foot, meanwhile, jumped by 60 per cent, an apparent good sign.
“We found that aggressive local debridement, aggressive local footcare, lots of minor mutations – like losing a toe or couple of toes – can save a foot,” said Nicholas Peti, a vascular surgeon who chaired the program.
By 2022, the program became a victim of its own success. Colleagues and administrators criticized the resources being devoted to limb preservation, Dr. Peti wrote in a paper last year. The initiative was subsequently suspended.
There’s one overlooked aspect of these various solutions: race. Kevin Fontaine, a patient advocate with the Assembly of Manitoba Chiefs, says the organization routinely helps people who want alternatives to amputation but can’t navigate an English-speaking, colonial bureaucracy.
A few years ago, Mr. Gott sought out Mr. Fontaine after his second amputation. Rehab staff said he’d never walk without a cane or walker. Within a few months, he required neither and began strolling upward of eight kilometres a day, but he couldn’t get decent prosthetic supplies, such as socks and lubricants.
After all he’d been through, he wondered why the medical system still seemed to be working against him. “Discrimination,” Mr. Fontaine says bluntly.
Over a diner lunch of liver and onions with a Diet Coke recently, Mr. Gott talked about the future. He’s working on a claim for the recent Indian Boarding Homes Program class-action settlement. Depending on the payout, he’d like to visit a big prosthetic clinic in Toronto to find some newer legs that might prolong his mobility. “I don’t need to be pampered,” he says, launching himself up from the table. “Just give me the proper tools and I can do everything myself.”
With files from Chen Wang
Indigenous health: More from The Globe and Mail
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