N.B. parents push for organ bill to pass after son died waiting 18 years for transplant

A New Brunswick couple is urging the legislature to move swiftly to adopt a presumed consent model for organ and tissue donations after their son died while waiting 18 years for a kidney transplant.

Jeannette and Norbert Roy believe Joël-Michel Roy, of Campbellton, N.B., would still be alive if he had received a transplant.

He was born with a bilateral kidney defect and underwent a transplant as a teenager, but it failed. At 24, his doctors put him back on a waiting list for an organ transplant.

"He was a priority, but since there had already been a transplant, it complicates things because the antibodies are high," his mother said in French. "It means that … it takes a big list, a large population pool to be able to find a kidney that is compatible."

On Feb. 24, after a lifelong fight, Joël-Michel Roy died in Saint John, following complications. He was 41.

Bill could increase donors, decrease waits

Last week, the Official Opposition introduced a bill they say could increase organ donations and decrease wait times.

Under the proposed amendments to the Human Tissue Gift Act, all adults who are not exempt will be presumed to agree to donate their organs and tissues when they die — unless they opt out, also known as deemed consent.

As it stands, New Brunswickers who want to donate their organs and tissues must check the appropriate box when they apply for or renew their Medicare card.

The bill received second reading and has been referred to a legislature committee.

Although government House leader Glen Savoie, who manages the legislative agenda, has vowed to make sure the bill moves forward, he did not commit to passing it quickly.

If you can find any examples where somebody in New Brunswick has died because we didn't have organ donation available, I'd like to know.- Glen Savoie, government house leader

When pressed on whether it should be a priority since people could die on the wait-list, Savoie called that fear mongering.

"If you can find any examples where somebody in New Brunswick has died because we didn't have organ donation available, I'd like to know. If that's happened … I'm not aware of it," he told reporters last week.

"I'm not saying it's not a priority, I'm just simply saying that if we're going to do this, why would we say, 'Let's go rush into this,' and then not be able to deliver the service because of the infrastructure that we have to build and everything else?

"Do you want it done right, or do you want it done fast?"

Jeannette Roy was shocked when she heard Savoie's comments.

She thought, "'Did he just say that?' Me, my son, if he had had an organ, he would not have died. Me, my son has just died with 18 years of waiting. It's long."

Roy immediately contacted Liberal health critic Jean-Claude D'Amours, who introduced the bill, to share her son's story.

"Of course, with a condition like Joël, you don't live to be 100. But Joël still had many years to live," she said. "He wanted to fight."

The Department of Health did not respond to questions Monday about why anyone would face such a long wait for a transplant, or if or how hearing Roy's story might change the government's approach to the bill.

Representatives of the Multi-Organ Transplant Program of Atlantic Canada in Halifax could not be reached for comment about why such long waits happen, or how often.

According to the program's website, one Atlantic Canadian died on the kidney wait-list in 2022, down from four in 2021 and 11 in 2020.

Among those waiting for a liver transplant in 2022, about 25 per cent died, the year-end report shows.

The program performed 74 kidney transplants in 2022. Of those, 19 recipients were New Brunswickers.

Twenty-two liver transplants were performed for Atlantic Canadians last year, including four New Brunswickers.

Roy hopes New Brunswick's system can change soon for others who are waiting.

She acknowledges it will take some time to organize the doctors who can remove the organs and send them to the right place.

But she notes transplants don't necessarily have to be done in the patient's province.

The key, Roy said, is getting more people to become donors in order to enlarge the pool and possibility of a match.

Nova Scotia is the only jurisdiction in Canada that has adopted a presumed consent model. The law change was passed in April 2019, and took effect in January 2021, once supports were put in place to handle the anticipated increase in donations.

A previous bill introduced by the New Brunswick Opposition in 2021 was referred to the law amendments committee for further study, but died on the order paper.

Fifty-nine New Brunswickers are currently on the wait-list for transplants, according to the Liberals.

It's expected to take at least two years before the new model can be implemented, according to the Health Department.