Organ donor agencies want federal government to collect donor information nationally

Canada's largest organ donor agencies are urging the federal government to take action to promote and manage organ donor registration at the national level.

At the House of Commons health committee on Monday, members of the Canadian Blood Services, BC Transplant and Ontario's Trillium Gift of Life Network said the key to reducing the list of more than 4,400 people waiting for an organ transplant is for the federal government to support the provinces through education campaigns and national data collection.

"We do really need to look at a culture of donation as we don't want donation to be an afterthought," said Amber Appleby, acting director of donation and transplantation at Canadian Blood Services. "All of the opportunities that make it most convenient for people to have many interactions with that opportunity would definitely facilitate an increase in people registering their decision."

While 90 per cent of Canadians support organ donation, less than 20 per cent have made plans to donate, according to statistics from the Canadian Transplant Society.

Committee member and Conservative MP Len Webber brought his private member's bill before the committee for discussion over how the federal government could play a role in facilitating organ donations, despite the process being under provincial jurisdiction.

Bill C-316 would allow people to use their tax forms to declare their consent as an organ donor. This information would then be fed to the provincial donor programs to help them identify opportunities.

"One of the reasons we're having this study is that we need to know what we can do as a federal government to improve the system here in Canada," Webber said.

Regional regimes

Unlike the United States, Canada does not have a centralized list of people waiting for an organ. The Liberal government voted against a bill in 2016 that would have supported the creation of a national registry to help identify those wishing to donate an organ and those who need them. The government said the bill would infringe on provincial areas of jurisdiction.

In a country where geography often plays a factor in whether someone receives a lifesaving organ, the efficiency of donor registration varies greatly from province to province.

Online registration is available in only five provinces: British Columbia, Ontario, Alberta, Manitoba and Quebec. In the case where someone dies outside of the province where they are registered for organ donation, it is unlikely that the hospital would be able to identify them as a donor.

When Canadians are reminded of the altruistic nature and the lifesaving benefit of donation, they respond and take action.- Ronnie Gavsie

"Usually what would happen is the next of kin would be approached to understand what would their wishes would have been," Appleby said.

The committee heard that the differences between systems pose the biggest barrier to effective organ donation, and lack of understanding makes the decision that much more difficult for families.

In Ontario, about one in five registered organ donors had their wishes overridden by family members, according to a 2016 report in the Canadian Medical Association Journal. Even if someone is registered as a donor, the family has the final say.

Saving lives

"In the cases where the family is gathered around the loved ones' bedside and the decision is made to withdraw life support, in many cases they will say that they want to do it now," said Ronnie Gavsie, president and CEO of Trillium Gift of Life Network. "We're all here and we've been through a lot together. We want to say our goodbyes, and we want to do it now."

Organ donations spiked last month after the Humboldt Broncos tragedy victim Logan Boulet had his organs donated to people in need of transplants. In a statement, the family said that Boulet had made his wishes clear when he registered at the age of 21.

"Following the tragedy in Humboldt and the revelation that one of the victims of that tragedy had registered for donation, he went on to save six lives," Gavsie said.

"When Canadians are reminded of the altruistic nature and the lifesaving benefit of donation, they respond and take action."