Organ donation awareness in Alberta

Yes, an Alberta Personal Health Card serves as an official second piece of identification to get into nightclubs. But more importantly, it serves as proof of someone’s wishes to be an organ and tissue donor.

It’s common to miss the checkboxes and signature line that identify one’s wishes on the back of the card, since “most people are never even told it’s there. I didn’t know until I was 30 and saw it one day,” says Jessica Royan, co-founder of non-profit Because I Can Project, created for organ donation awareness.

“I thought, ‘What? I’ve been carrying this around in my wallet and had no idea? I can’t be the only one,’ ” says Royan – and she isn’t the only one. The lack of knowledge so common among her family, friends and everyone else she talked to in Calgary called for a solution. The result of this discovery is the creation of her project; which aims to improve awareness within Canada.The back of the Alberta health care cards provides a place to indicate if you want to be an organ donor.

Photo by Veronica Pocza

“There isn’t nearly enough awareness,” explains Royan, who, to many people’s surprise, has no personal reason for wanting to spread the message.

“I have never had a family member or someone close to me be in need of an organ. But it’s so crazy that becoming a donor is so easy, but so many people don’t do it. It bothers me because I don’t think people don’t care about organ or tissue donation – they just don’t know enough about it,” she says.

Why don’t people know about it?

Royan says the current system for organ donation registration across Canada is very scattered. The registration process is different within each province, with only three – Ontario, British Columbia and Manitoba – adopting an official registration system.

Alberta’s current system, however, does not use an official registration or tracking method. People’s wishes are not recorded anywhere for documentation. Royan says having no official paperwork or system could be why organ donation isn’t talked about in families or schools.

“I think it’s a little taboo for people to talk about organ donation because the topic does revolve around death,” she says.

The differences within Canada

Shelley Hunt is a co-founder of Because I Can Project, and being from British Columbia, Hunt has experienced the relatively new registration process active in her province.

“This system definitely works better than what’s currently implemented in Alberta and other provinces,” she says.

Making your wishes known is the most important thing in organ donation.

Photo by Veronica PoczaHaving an actual registration system, whether online or within an office, provides a means of tracking organ donor rates and accessing people’s wishes upon the time of death.

“It just helps avoid the awkwardness of having a family decide for you on an already upsetting day. This way, you are guaranteed to have your wishes met and they are not having to step in and make an uninformed decision,” she says.

Hunt explains that a transplant team deals with the patient’s records, eliminating the “most common myth among organ donating, which is doctors are not working hard to save patients that are willing to donate their organs,”

“Not only is this entirely untrue, but the doctor’s wouldn’t even have access to that information,” she says. “It is information for the transplant team and the doctor will just focus on the task at hand.”

In Alberta, there is no way of knowing a patient’s wishes. “Making your family aware of your choice is so important – and given the current system, they are the ones who will make the decision upon that day, so it’s best they know exactly what you want.”

Hunt explains that as the donor you need to make your preference known to your family, but even that doesn’t serve as a guarantee. It seems overall easier and more official to have a registration process to solidify someone’s decision.

What’s going on

A push for national consistency is underway, as a petition is circling from the Because I Can Project for Canada to adopt an “opt-out program.” Royan says this is a program currently active in Spain and she suggests it is the reason why Spain’s organ donor is count is among the highest in the world.

The opt-out program would work in reverse, as everyone is born an organ donor and only signs the paper work to unregister from donation.

Alison Dudus, a local Calgarian who waited over four years for a kidney transplant, believes this system would eliminate wait times and increase awareness.

She emphasizes the importance of making your choice known.

“It’d be easy because if you don’t want to do it, you just sign the paper work and that’s that,” Dudus says, insisting that it’s more likely for people to do the paperwork for something they want to make sure doesn’t happen.

“It’s not like anyone would be begging you at the last minute to change your mind. We just need a way of tracking those who do want to be organ donors so that nobody can override their wishes.”

vpocza@cjournal.ca