Organ recipients push Ontario government to change donation rules

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Helene Campbell wants others to have a second chance at life now that she’s on her third.

The 34 year old has undergone two double-lung transplants — she calls herself a “French-Canadian double-double” — and believes a change in law can help save significantly more lives.

She, and other organ recipients, are now pushing Ontario Premier Doug Ford’s government to change a law to help others in similar situations.

In mid-April, New Democrat health critic France Gelinas reintroduced her private member’s bill, the Peter Kormos Memorial Act, at Queen’s Park.

The bill proposes to make organ and tissue donation a procedure to opt out of while still alive rather than the current system that allows the living to opt in to donating organs upon death.

Consent to donate organs would still be required by parents or guardians for children under 16.

“I can’t begin to imagine what the donor families went through,” Campbell said recently.

“But because of their decision and because of a system that made that decision possible, my life goes on.”

The province did not immediately respond to a request for a comment on whether it would support such a change in law.

This is the seventh time Gelinas has tabled the bill. The most recent iteration died when Ford called a snap election in February.

There are 1,600 Ontarians on a wait list for an organ or tissue donation, Gelinas said.

“Every three days, a person on that wait list will die because no organs were available to save their lives.”

Only 36% of Ontarians have registered to donate organs or tissue, she said. adding 90% of Ontarians say they want to be a donor.

Lisa Caswell also wants to see the law changed. Her son, Graham, lived with kidney failure for nearly a year at 15 years old. Caswell donated one of her kidneys to her boy.

“Immediately, when he did receive my kidney, his life completely changed,” said Caswell, who has since joined the Kidney Patients and Donor Alliance to share stories of the impact of organ donation.

“He grew literally almost six inches. He went from surviving to living.”

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Her son soon needed another kidney as well as a liver transplant, which he received from a deceased donor about a year after going on the wait list again. He recovered, eventually went to business school and now has a career in commercial real estate.

“I can’t tell you how grateful he is, and how grateful we are as a family, to have had that happen and to have received that gift,” Caswell said.

Canadian Blood Services, the charity that maintains a national transplant registry, said there is great need for more organ donors, but isn’t entirely sold on presumed consent alone as a strategy to boost donations.

“There is considerable evidence to suggest that strategies such as in-hospital transplant co-ordinators, education and training for medical professionals, and public education are more effective at increasing donor rates than presumed consent legislation,” the organization says on its website.

“For example, Spain attributes its world-leading deceased donor rate primarily to its use of transplant co-ordinators, donation physicians and a robust education program for health-care professionals, with presumed consent legislation playing a lesser role.”

The organization suggests using a similar approach to the one adopted in Spain, yet some provinces are moving toward presumed consent laws.

Nova Scotia passed legislation in 2021 to adopt presumed consent organ and tissue donation, becoming the first jurisdiction in North America to do so.

Within a year, organ and tissue donors were up 40%.

New Brunswick passed a similar law in 2023 and is set to implement the new program this year. Prince Edward Island recently passed a non-binding motion to figure out if and how it can be done.