Northern, Indigenous communities need better access to organ transplants, say Sask. advocates

Celia Deschambeaultis speaking out about the lack of access to transplant services in the province's north after seeing what it took for her uncle to access dialysis proceduresoutside his community, and then donating a kidney to himin 2011.

Deschambeault said her uncle had to leave Cumberland House Cree Nation about three times a week for dialysis,and would have to clear an entire day's schedule for the procedureand accompanying trip.

She said people in his position often have to travel to Tisdale, Melfort or Saskatoon. Tisdale is the closest at about 170 kilometres from the First Nation community.

Her uncle had been on dialysis for five years when Deschambeault began getting tested in January 2011 to learn if she was a match for him.

"It was a really draining process for him," Deschambeault told Garth Materie, host of CBC'sBlue Sky.

LISTEN | Live organ donors talk with CBC Blue Sky's Garth Materie about why donations are difficult but important:

She said there needs to be better access for people in the north, including having at-home dialysis machines. Since 2011, she says the community services haven't changed.

"Other than transportation there was no support here in the community," she said.

"We don't have the services to support the things that they need."

She believes there needs to be more education around transplants and the importance of them, and financial support for those looking to donate.

After she donated her kidney on Nov. 23, 2011, she said there was also a lack of aftercare services, or people checking in to see how she was managing after the operation.

"Being in the north, sometimes we're not as heard as we'd like to be heard," Deschambeault said.

In 2021, four of the 27 adult kidney donations were from live donors, or about 15 per cent, according to the Canadian Institute for Health Information.

Deschambeault's daughter also has a condition that means she may need a kidney transplant in the future, she said.

There were 115 people waiting for a kidney transplant in the province in 2021 and two people had died while awaiting a transplant, according to the health information institute.

LISTEN | A Sask. woman's car advertisement for a new kidney drives a donor her way:

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A Saskatoon woman who used her car's rear windshield as a travelling advertisement in her quest for a kidney has found a match. Host Leisha Grebinski speaks with Debbie Onishenko and with Brent Kruger, the man who saw her sign and is donating one of his kidneys to her.

Before moving to Alberta, Caroline Tait was a part of a think tank a part of an ongoinggroup called First Nations and MtisOrgan Donation and Transplantation Networkwhich focusedon the transplants and organ donations in the north.

Tait is a medical anthropologist with interests inIndigenous health and social justice and aprofessor in the faculty of social work at the University of Calgary.

Tait said people need equitable access to organ donations, which isn't the case for northern residents, andthat there isn't enough data about how Indigenous people in the north are affected by a lack of accessible servicesincluding which populations arereceiving the donations by Indigenous or non-Indigenous status.

For example, she said, if someone is living in La Rongeand has to travel to somewhere like Saskatoon several times for pre-transplant appointments, about 340 kilometres away, it can be more difficult, especially in the winter months.

If patients "end up having to cancel one or two of these appointments because of the weather, that's viewed as non-compliance by the medical people," she said. "That's an equity issue around geography."

People may also not have access to travel, or be able to afford the travel and time needed forthe appointments, she said.

With Indigenous leaders often focusing on other health-care emergencieslike higher rates of COVID-19 during the pandemic, mental health or sexually transmitted infectionsthe issue of organ donation accessibility is swept under the rug, Tait said.

"None of this is easy, these are complex health issues that require time and investment, and so this is a long-term investment to reduce those inequities in organ donation and transplantation and more broadly in terms of access to dialysis and that," Tait said.

Taitbrought up the potential of using virtual health care, where possible, to reduce the need for travel.

She also said people need more education about organ donation and being a live organ donor.

In an email, the Saskatchewan government said it invested in organ and tissue donation in Regina and Saskatoon, the only locations where the surgeries are available because of the specialized care needed.

It also said in 2020-21 the Ministry of Health launched a campaign to raise awareness of the importance of organ donation in Indigenous populations with the information translated into Indigenous languages.

"Access to health services is an important priority and the Government of Saskatchewan is continually looking to adapt for the unique needs for our province's north," it said.

The province also said it approved a kidney health unit in La Ronge's hospital renovation which is currently in the planning stage,and $700,000 was announced in the 2019-20 provincial budget for a satellite dialysis service in Meadow Lake.