Lack of dialysis services in Northern Manitoba proving fatal, Indigenous patients say

A shortage of dialysis machines on the Norway House Cree Nation is forcing many patients to relocate to urban centres. But once there, many suffer severe loneliness so they make the journey home putting their own lives at risk.

Rebecca Henry was closely tied to her community and family in Norway House. She was a mother of six and a grandmother. 

All she wanted to do was reunite with them, but instead, Henry, 67, came home in a casket.

"All my mom wanted was to go home. That was her wish, was to go home, but she knew she couldn't," says Rebecca's daughter Lucy Henry, 45, of Norway House.

"There were many times she used to tell me that 'I wish I could just die now.'"

Lucy knew her mom suffered from severe loneliness.

Known as "Bee", Rebecca Henry was 59 in 2008 when she was told she had to leave Norway House and move to Winnipeg, more than 800 kilometres away, in order to receive dialysis care. That's because there aren't enough dialysis machines in her community.

Henry moved into Kinosao Sipi Ininew Waskahikan, the community's short-term boarding home located in downtown Winnipeg. The boarding home is a place for community members to stay while they are getting medical help in the city.

Lack of services

Although there are 20 community members currently on dialysis, Norway House maintains a four-station dialysis unit at its hospital that can only handle up to eight patients at a time. The community also provides services to neighbouring communities based on patient requests and waiting lists, an exact number is unknown.

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Both Health Canada and Manitoba Health contribute to the operation and funding of the dialysis centre.

Because the hospital has too few machines to meet the community's needs, some patients need to relocate to Thompson or Winnipeg to access services. It's a similar situation across the country. In northern Quebec, one in five adults is living with diabetes in Cree communities, yet there are just two facilities offering dialysis, located thousands of kilometres apart.

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The annual average cost of dialysis treatment in an urban dialysis centre is about $75,000 per person, per year. But in rural and remote areas, the Manitoba Renal program said that cost rises to about $135,000 per patient.

When patients are relocated to Winnipeg, they are entitled to transportation for up to four months or accommodations for up to three months while the patient makes arrangements to relocate based on Health Canada's non-insured health benefits, or NIHB program. But after that, it is up to the patients to make arrangements for themselves. Benefits will only then continue on a case-by-case basis.

When and if a patient is need of an escort, Health Canada decides whether the patient is eligible for funding. If approved, the patient may have an escort, but the length of time for one is based on a patient's case and needs are reassessed. 

Health Canada would not specify how much is spent on travel, accommodations, meals and escorts specifically for Norway House patients or for those who have to relocate to Winnipeg, but did say the NIHB program expenditures in the Manitoba Region for 2014/15 totalled $239.2 million.

Up at 3 a.m. for dialysis

Sandra Clarke, a community member and advocate for dialysis patients, is part of the Norway House Dialysis/Kidney Transplant Support Group, which provides support to dialysis patients and is working towards bringing more machines to Norway House.

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Clarke said when funding for accommodations and an escort end, it takes a huge toll on the patient. Many patients are aging and quite sick, not to mention weak, especially after regular dialysis treatments. According to Clarke, she was aware of one dialysis patient from Norway House who found himself staying in a shelter.

"What it comes down to is the people, is homelessness," said Clarke, adding she wrote a letter to Health Canada. "We need to dialyze in our community, we need more machines."

Clarke's son, Thomas, who is 28 years old, is one of two dialysis patients who has to drive three hours one way to Thompson from Norway House three times a week to receive care.

A spokesperson from the Manitoba Renal program said the current federal and provincial funding agreement means the dialysis unit in Norway House is only opened three days a week, staffed by "2.5 nurses."

"They get picked up at three in the morning, and then they get hooked up at seven in Thompson, and they're done by 12 noon," Clarke said.

They should have one emergency dialysis in each reserve.- Anita Dixon

But the two patients frequently have to wait for other patients to wrap up their medical appointments who are in Thompson before they can return. Clarke said her son usually doesn't get home until 7 p.m.

Deputy Grand Chief Gilbert Fredette of Norway House said having to wake up patients in the early morning for dialysis is putting their health at risk. It's even worse during the winter months, he said.

Desperation, loneliness

Anita Dixon wants dialysis available in each community. Dixon's husband is getting dialysis in Winnipeg and her 30-year-old granddaughter Nancy Muswagon recently died.

Muswagon, who was originally from Cross Lake, went home from Winnipeg this past summer to attend her community's annual Treaty Days. A dialysis patient, Muswagon end up extending her stay so she could visit her family longer. In the end unable to make the arrangements to dialyze, Muswagon died during her visit. She was the mother of two.

"They should have one emergency dialysis in each reserve," says Dixon, breaking down crying. "They can use it when somebody goes home and is having a hard time to come back."

Dixon lives at Dial-A-Life with her husband, a transitional housing program located in Winnipeg for patients across the North. Dixon said she's heard some patients want to stop their dialysis just to make the loneliness go away.

Dialysis services supposed to be expanded 

The Manitoba Renal Program is working with Canada and Norway House Cree Nation to extend the hours of their dialysis unit in order to double the capacity from three days a week to six, health officials said. 

Lucy Henry feels her mother would be happy to know the dialysis unit will be expanded, even though her mom is not here to see it happen. At the time Rebecca Henry was alive, the family knew that the only way a patient from Winnipeg would be able to go back to their home community is when someone died.

Rebecca Henry died on January 31, 2010 before ever being able to see her grandchildren again.