Province calls special committee to improve 'unacceptably low' organ donation rate
'There needs to be a broad discussion about why the sign-up rate is so low, and how can we increase it'
A day after rejecting a bill that would have made all Manitobans organ donors — unless they explicitly opted out — the province's Progressive Conservative government has called a rare special committee on organ donation.
"In Manitoba, our sign-up rate for organ donation is unacceptably low. There needs to be a broad discussion about why the sign-up rate is so low, and how can we increase it," Health Minister Kelvin Goertzen said during question period Wednesday.
"That discussion must be broader than what is being proposed in private member's legislation before the house now."
The special standing committee on organ donation will be chaired by Reg Helwer, Tory caucus spokesperson and MLA for Brandon West, and will aim to increase the rate of organ donation in the province.
Helwer said special committees are a "rare event" in the legislature, but it's important to hear from a broad range of voices on the issue of organ donation. The committee will include MLAs from his own party as well as the NDP, and likely some Independent members, he added.
Helwer said it's too early to say if Independent Assiniboia MLA Steven Fletcher will be appointed to the committee.
Fletcher tabled a private member's bill that would have established presumed consent in Manitoba, making all residents organ donors unless they specifically requested not to be.
On Tuesday, members of the Progressive Conservative caucus voted against the bill. At the time, Helwer said he and his colleagues prefer education as a means to increase sign-up rates.
'Education isn't enough'
"Education isn't enough," said Robyn Nault, an independent sales consultant whose husband has been living with primary sclerosing cholangitis — a chronic liver disease — since 2012. She and her husband, Riley, have been waiting for a liver donation for almost two years.
"You can educate anyone all you want, but it's [with] actions that these people need to live," she told CBC Wednesday night.
Nault said voting against the bill is a mistake.
"If you reject it, it's essentially costing many, many more lives," she said.
Riley came close to getting a liver donation at one point, but the potential "living donation" fell through. Since then, Robyn Nault said she and her husband have been "living under a ticking time bomb."
"It's like doors being shut in my face every way. It's hurtful and you start to [think], 'What am I doing wrong? I'm trying my very best.'"
Her husband struggles with many health problems on a regular basis, such as jaundice, muscle deterioration, and a risk of internal bleeding because of his autoimmune disease.
"There are ways to prevent this, and if there is, we need to be taking that initiative and going forward with it, because it's unexplainable … the pain and the suffering," Nault said.
"My husband goes through it every day and I can't begin to understand how he truly feels."
Not convinced presumed consent best option
The bill is set to come to a final vote on Thursday.
On Wednesday, Helwer said the committee will likely explore the idea of presumed consent, among other options.
But he remains unconvinced it's the best path forward.
"When I first ran into presumed consent as an issue many years ago, I thought it was a very elegant solution to our transplant issues," he said. That's no longer the case.
Where the practice has been successful, it's often preceded by education programs and generally higher rates of donor sign-up, Helwer said. If those things aren't in place, imposing presumed consent can lead to "negative backlash," he said.
"People don't think the government should have a right to their body after they pass away."
Details need to be 'ironed out': NDP leader
NDP Leader Wab Kinew said the special committee is a "good forum" for the discussion.
"There's a need for organ donation rates to increase in our province. But there's also some very sensitive issues around people's rights to choose what happens to their own bodies," he said.
Kinew said his party is willing to participate in the committee, but he wants to know more first.
"We do want to have some of the details ironed out, in terms of what is the composition of the committee, what is the terms of reference, stuff like that."
Helwer said the first meeting of the committee will likely take place in the new year.
With files from Peggy Lam