Canada

Northern indigenous communities need better access to organ transplants, says Sask. advocate

People in northern Saskatchewan who need organ donation or need to access regular procedures while awaiting a donation may have difficulty accessing these services.  Proponents say that needs to change.  (Radio Canada - photo credit)

People in northern Saskatchewan who need organ donation or need to access regular procedures while awaiting a donation may have difficulty accessing these services. Proponents say that needs to change. (Radio Canada – photo credit)

Celia Deschambeault speaks about the lack of access to transplant services in the north of the province after seeing what it took for her uncle to access dialysis procedures outside his community and then donating a kidney to him in 2011.

Deschambeault said her uncle has to leave Cumberland House Cree Nation for dialysis about three times a week, freeing up a full day’s schedule for the procedure and accompanying travel.

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

Her uncle had been on dialysis for five years when Deschambeault began getting tested in January 2011 to see if she was a good fit.

“It’s been a really trying process for him,” Deschambeault told CBC host GarthMatter Blue sky.

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She said there must be better access for people in the North, including dialysis machines to take at home. Community services have not changed since 2011, she says.

“Other than transportation … there was no support here in the community,” she said.

“We don’t have the services to support the things they need.”

She believes there needs to be more education about transplants and what they mean, as well as financial support for those who wish to donate.

After donating her kidney on November 23, 2011, she said there is also a lack of follow-up services or people coming in to see how she’s doing post-surgery.

“Because we’re up north, sometimes we’re not heard the way we’d like to be heard,” Deschambeault said.

According to the Canadian Institute for Health Information, four of the 27 adult kidney donations in 2021 were from living donors, or about 15 percent.

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

In 2021, 115 people were awaiting kidney transplants in the province and two people had died while awaiting transplants, according to the Health Information Institute.

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Before moving to Alberta, Caroline Tait was part of a think tank that was part of an ongoing group called the First Nations and M├ętis Organ Donation and Transplantation Network, focused on transplantation and organ donation in the North.

Tait is a medical anthropologist with interests in indigenous health and social justice and a professor in the School of Social Work at the University of Calgary.

Tait said people need equal access to organ donation, which is not the case for northern residents, and that there is insufficient data on how northern indigenous peoples are being affected by a lack of accessible services — including the Population groups receiving these donations according to indigenous or non-indigenous status.

For example, if someone lives in La Ronge and has to travel several times to Saskatoon, about 340 kilometers away, for pre-transplant appointments, it can become more difficult, especially in the winter months.

If patients “end up having to cancel one or two of those appointments because of the weather, that’s considered non-compliance by medical professionals,” she said. “It’s a fairness issue in terms of geography.”

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

As Indigenous leaders often focus on other public health emergencies — such as higher rates of COVID-19 during the pandemic, mental health or sexually transmitted infections — the issue of organ donation accessibility is being 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 these injustices in organ donation and transplants and more generally in access to dialysis and so on,” said called Tait.

Tait pointed to the potential of using virtual healthcare to reduce the need for travel.

She also said people need more education about organ donation and living organ donors.

In an email, the Saskatchewan government said it has invested in organ and tissue donations in Regina and Saskatoon, the only places where the surgeries are available due to the specialized care required.

It also says that the Ministry of Health has launched a 2020-21 campaign to raise awareness of the importance of organ donation among indigenous peoples, with the information being translated into indigenous languages.

“Access to health services is a key priority, and the Saskatchewan government is constantly trying to adapt to the unique needs of our province’s north,” it said.

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

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