Madeline Manitok, 74, undergoes peritoneal dialysis at her home in Rankin Inlet, Nunavut. Home dialysis has allowed her to stay in her Nunavut instead of getting treatment in faraway Winnipeg.Photography by Fred Lum/The Globe and Mail
When Madeline Manitok learned in 2019 that her kidneys were failing, she had two choices. She could move into a hotel near a hemodialysis unit in Winnipeg for the rest of her life, or she could return to her family in central Nunavut and die.
“I found out that I couldn’t go home if I wanted to live,” she said. “I was devastated.”
If Ms. Manitok, now 74, had been a resident of Manitoba, she would have qualified for peritoneal dialysis, a life-sustaining treatment that renal patients manage at home in remote communities all over Canada. But as a Nunavut resident, she was forced to live for two-and-a-half years in a Homewood Suites while undergoing hemodialysis at a Winnipeg hospital, 1,500 kilometres away from her home in Rankin Inlet.
Ms. Manitok’s experience illustrates a common challenge with medical care in Nunavut, a vast territory of about 40,000 people living in 25 fly-in communities with limited health services. Sometimes, so few Nunavut patients have a particular medical need that the bureaucratic structures required to meet it haven’t been built. Patients fall through the cracks of cross-boundary care, unless, as eventually happened in Ms. Manitok’s case, somebody in the health system makes fixing the problem a personal mission.
“A lot of times the services that affect a small amount of people are victims of the other pressing priorities,” said Francois de Wet, chief of staff for the territory and Iqaluit’s Qikiqtani General Hospital. “That’s the honest answer.”
Unlike the more common hemodialysis performed in clinics, home peritoneal dialysis doesn’t siphon and filter blood outside a patient’s body. Instead, it uses a catheter implanted in the lining of the abdominal cavity – the peritoneum – to deliver a cleansing fluid called dialysate that collects filtered waste, which is later drained through the same catheter.
The treatment can be delivered manually with little more than a pole from which to suspend bags of dialysate as gravity pushes it through the catheter. Peritoneal dialysis can also be administered with an automated cycler that delivers the treatment overnight.
When Ms. Manitok’s kidneys failed in 2019, the main barrier to her returning home was the absence of a funding agreement between the governments of Nunavut and Manitoba. Under a long-standing reciprocal billing deal, Nunavut paid for hospital-based hemodialysis in Winnipeg, but not for home dialysis in Nunavut under the supervision of Manitoba health staff.
Complicating matters further, Manitoba doctors and nurses were not licensed to provide medical advice and support by phone or video to Nunavut patients, a necessity because Nunavut doesn’t have a renal program of its own.
By early 2019, someone in Manitoba’s health care bureaucracy – it’s not clear who – realized there was no funding arrangement for home dialysis in Nunavut, despite a few patients having been approved for the service and sent home on a one-off basis in the past. As a result, Manitoba’s renal program began refusing to assess Nunavut patients for the service, effectively trapping them in Winnipeg.
Ms. Manitok's daughter-in-law Jovette Kurok is trained to help with the dialysis.
That was the state of play when Ms. Manitok, an Inuk born in an igloo in the high Arctic community of Naujaat, scraped her shin and developed an infection that refused to heal.
When she flew to Winnipeg in April of 2019 to have her swollen leg examined, medical staff checked her kidneys and found they were barely functioning. She had suffered a rare complication in which the infection provoked her immune system to attack the toxin-removing organs.
Ms. Manitok, who had recently retired from a long career in the finance office of a government department, struggled during her time in Winnipeg. She and her husband of more than 50 years, Paul, missed their children and grandchildren.
Their son Jeff Manitok and his common-law wife, Jovette Kurok, took out a loan to pay for a big family trip to Winnipeg at Christmas in 2019, but after the pandemic hit, such visits were no longer possible. Nor was a kidney transplant from a grandson who was a perfect match and eager to donate. Kidney transplants were among the surgeries halted in the early months of the pandemic.
When restrictions loosened, Ms. Manitok returned to Rankin Inlet in late October of 2021 for what was supposed to be a weekend visit.
“I was going to kiss the ground,” she said, laughing. “Tears. Tears of happiness.”
Ms. Manitok was overjoyed to come home in 2021 and see her family again.
Then bad weather grounded planes in Rankin Inlet for a week, cutting her off from her dialysis appointments. But Ms. Manitok soon had more cause for joy. The unplanned break led doctors to discover that her kidney function had improved enough for her to forego dialysis. She was able to stay in Rankin Inlet for nearly a year before regular blood tests showed her kidneys were failing again.
This time, the outcome would be different for Ms. Manitok.
Unbeknownst to her, Sara Dunsmore, medical director of the peritoneal dialysis program at Winnipeg’s Seven Oaks General Hospital, had reached out to Dr. de Wet to lobby for the handful of Nunavut dialysis patients stuck in the Manitoba capital. “Kidney failure can happen suddenly. All of a sudden, they are so far from home, from their family, their job, their life. It’s incredibly difficult,” she said. “It was frustrating to have bureaucratic reasons that they couldn’t return home.”
Dr. Dunsmore and Dr. de Wet began working, with the help of others in the Manitoba and Nunavut health systems, to institute a smooth approval process for peritoneal dialysis in the region of Kivalliq, which is adjacent to Manitoba.
The Government of Nunavut agreed to pick up the tab while it negotiated for permanent funding with the federal government’s Non-Insured Health Benefits Program for First Nations and Inuit, which pays for medical travel.
“It was not a money issue,” Dr. de Wet said. “None of the conversations I’ve ever had with any member of the Department of Health, was there an issue with, oh geez, this is too expensive.”
Boxes of dialysis supplies are piled up in Ms. Manitok's home.
It made sense that money wasn’t much of a stumbling block. Peritoneal dialysis for one patient in Nunavut costs an estimated $38,685 a year, excluding the cost of delivering supplies – less than a third of the $135,000 cost of sending a patient to Winnipeg to live in a hotel while receiving hemodialysis in hospital, according to the Government of Nunavut.
Once Nunavut agreed to pay, a trickier proposition was licensing for Manitoba nurses to remotely monitor dialysis patients, Dr. de Wet said. Eventually, they found enough willing to apply for Nunavut licenses at the Government of Nunavut’s expense. While the application process is under way, doctors in Manitoba can monitor patients from afar, thanks to a reciprocal licensing agreement for physicians enacted during the pandemic.
None of that would have happened if Dr. Dunsmore hadn’t contacted Dr. de Wet. “She took the time to advocate for these patients and to say, ‘we need to do better,’” he said. “And I agreed with her. We needed to do better.”
Three patients in the Kivalliq region are now on home peritoneal dialysis and others are being assessed in case they need it in the future, Dr. Dunsmore said. One of the current users is Ms. Manitok. In October, she began receiving peritoneal dialysis at her place in Rankin Inlet, helped by her daughter-in-law, Ms. Kurok.
Although peritoneal dialysis isn’t as complicated to administer as hemodialysis, patients still need assistance. Ms. Kurok underwent training in Winnipeg. She jumped at the chance to repay the kindness of her in-laws, who used to love taking her six children to their cabin outside Rankin Inlet to hunt, fish and kayak.
“My parents died when I was really young,” Ms. Kurok said through tears after helping her mother-in-law with one of four daily dialysis treatments in late October. “I’ve always said that I was going to take care of my in-laws because they’re so nice to me.”
Ms. Manitok is now thriving. She even told her grandson to keep his kidney.
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