She's giving her sister a kidney, but didn't know the financial toll

An capital of canada adult female who is donating her kidney to her sis in Nova Scotia says she was shocked to study that the responsibility won't cover travel expenses for her partner to support her, and worries the current policy might deter others from live donation.

Amanda Acker is set to give the life-changing organ to her sister, Traci Parker, on Tuesday.

She said the financial strain is leading her to leave the province just a few days after the operation, instead of following the surgeon's advice to stay for one to two weeks.

"The ability to save a life should not depend on your ability to absorb that cost, and that's what's happening right now," said Acker.

Acker started the process to be a live donor in September, after 56-year-old Parker, who has polycystic kidney disease, learned she would either need a transplant or dialysis.

"The first thing I did was take a look at survival rates," Acker said.

"She's very young to be needing a kidney transplant, so to me, this was an important piece of the puzzle."

According to MyHealth Alberta, a kidney from a living donor can last 15 to 20 years, while a deceased kidney donation lasts 10 to 15.

Acker said she's been speaking to staff in both the Ontario and Nova Scotia live donation programs for months and felt emotionally and financially prepared for the surgery.

Acker said she was told there was no option for her to make the donation in Ottawa and have the organ flown to Halifax. She accepted that, thinking her expenses would be covered.

Nova Scotia does provide support for the actual donors, including money for travel, $125 a night for a hotel, and $43 a day for meals.

But she said she was blindsided to learn that unlike the Ontario program, Nova Scotia would not pay for a companion to support her. The information is not on the website.

"The first time I understood what the true financial component or reality would be was three weeks ago. To me, that's not informed consent. That's not acceptable," she said.

"In order for me to have someone with me, to advocate for me in the hospital, to be there to help me get home, that would come to around $3,000."

Nova Scotia Health Minister Michelle Thompson said different provinces have different approaches.

"We do the best we can with the resources we have," she said. "This is certainly what we're able to do at the moment."

While several jurisdictions do not cover a companion, there are programs in British Columbia, Yukon and Ontario that do.

When asked if the policy should be re-evaluated, Thompson said she didn't know Acker's situation and couldn't comment.

"I really don't have an opinion on that. Cases are very individualized. Nova Scotia does the very best they can with the resources they have."

Nova Scotia Health would not do an interview, saying the policy is handled by the province, but it answered follow-up questions in an email.

It said there are only one or two live donation operations in Nova Scotia each year that involve the donor being from another province.

It said finances are discussed when the donor meets with a social worker, at minimum four to six weeks prior to donation.

It added the website is being redesigned, and the new site will include more information about what donors should expect through the process.

Acker said donors should be told from day one to give them a chance to save up. She also disagrees that the province can't afford to cover a companion.

"The idea that the money isn't there is clearly not the case because they're going to spend it on dialysis costs, and they're going to save it by doing these transplants more quickly."

Nova Scotia Health would not say how much dialysis costs, saying there's a wide range because each patient is different.

Acker is calling on Nova Scotia to revisit the policy. She said there's no way she could walk away from making her donation at this stage, but she'll be dealing with the financial burden long-term.

"I would love to see an element of compassion and a realistic view of the donor experience post-op. We need someone there with us. We are in vulnerable situations. We are going in for major surgery without someone there to advocate.

"That's unacceptable."

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Videojournalist

Carolyn Ray is a videojournalist who has reported out of three provinces and two territories, and is now based in Halifax. You can reach her at Carolyn.Ray@cbc.ca

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