New law would make Albertans organ donors unless they opt out

Every adult in Alberta would be considered a potential organ and tissue donor — unless they choose otherwise — if a new private member’s bill is passed in the legislature.

The Human Tissue and Organ Donation (Presumed Consent) Amendment Act passed first reading on Wednesday after it was presented by MLA Matthew Jones.

Albertans currently have to opt-in as organ donors.

Under Bill 205, Alberta would transition to an opt-out program — where adults are presumed organ donors unless they refuse.

A physician is still expected to confirm the person’s wishes with next of kin, who ultimately have the final say.

Several surveys have suggested more than 80 per cent of Canadians are willing to donate their organs.

Jones said Friday only 19 per cent of Albertans are registered donors.

“It just seems that the opt-in system is not as suited to Canadians as an opt-out system,” Jones said.

“I would hope that this bill is a catalyst for conversations, education and future changes to our system to enhance organ donation in Alberta.”

Nova Scotia became the first North American jurisdiction to pass a presumed consent law in April, joining several European countries, including Spain, Austria and Belgium.

Research suggests presumed consent laws are associated with a 25 per cent increase in donation rates.

Health Minister Tyler Shandro said his office had no part in drafting the bill. UCP members are expected to have a free vote on the bill.

“Presumed consent is not part of my department’s current plans, but I’ll respect the views of my colleagues. If the House passes a bill, I’ll work to implement it,” Shandro said in a statement to CBC News on Thursday.

Shandro said that while the number of Alberta organ donations has increased in recent years, the province needs to do more to bolster rates.

“It’s an important topic and I look forward to the discussion in the House and the public,” he said.

‘It’s the greatest thing’

Memory Fedoruk is one of roughly 650 people on the organ transplant wait list in Alberta.

She has been on the list since March 2014, living on dialysis until she is cleared for a kidney transplant. She said doctors told her she’d be waiting for four to five years.

An opt-out organ donation program would be life changing for thousands of Albertans, Fedoruk said.

“I think it’s the greatest thing, obviously,” she said. “There’s so many people that don’t even think about it and of course have not made the effort to say, ‘yes I want to be a donor.'”

About half of the people on Alberta’s wait list need a kidney transplant.

The five-year survival rate for a person on dialysis is roughly 44 per cent, according to data from the Canadian Institute for Health Information.

But that number jumps to upwards of 80 per cent for patients who receive a kidney transplant.

Fedoruk expects the legislation will get people talking about organ donation.

“The more people that talk about it, the more people are aware of the options,” she said.

Only about one per cent of deaths in Canada result in a potential organ donor.

One organ and tissue donor can save up to eight lives, and improve the quality of life of up to 75 people, according to the federal government.

Spain, an early adopter of presumed consent in 1979, has the highest organ donation rates in the world — roughly 48 donors per million people. Alberta’s rate is 19 donors per million.

Last year, 23 people died while waiting for an organ transplant in Alberta.

‘Not something to rush into’

Shandro said Thursday he is still undecided how he’ll vote on the bill.

“It’s new in Canada and it’s not something to rush into,” he said in the emailed statement.

It’s essential the government maintains confidence in the organ donation system, while respecting the deeply personal decision families have to make, Shandro said.

“Presumed consent could help increase donations, but it could also raise objections from people who might feel coerced.”

Manuel Esconto, a local representative of The Kidney Foundation of Canada, said presumed consent could generate an unintended backlash, with people refusing to consent because they perceive the law as an attempt to violate their autonomy.

“[The kidney foundation] certainly supports an opt-out system, but not on its own,” Esconto said. “It has to be part of a bigger comprehensive strategy to improve organ donation and transplant rates.”

As part of the bill, there’s a two-year implementation delay for the province to transition to an opt-out system, Jones said. That time would also be used to increase education, introduce organ donation teams in hospitals and improve the donation registry, he said.

The law would require a medical practitioner to refer information about a potential organ donor to a donation organization, or what’s called mandatory referral.

It’s one of the changes the kidney foundation called for, along with real-time audits of the organ donation system to determine how each case is handled.

Under the new bill, presumed consent would not apply to people under 18 years old or who have not lived in Alberta for a year before their death.

CBC