The provincial agency that co-ordinates organ transplants warns many of the 1,500 people in Ontario on the waiting list may die because there are not enough organs to meet the need.
Many people who want to donate their organs don't realize that signing the card that used to be sent out with driver's licences is not good, said Ronnie Gavsie, CEO of the Trillium Gift of Life Network.
She says that to guarantee their wishes to become a donor are known, people need to register online or at a ServiceOntario centre.
"Signing a donor card does not mean that you are registered," she said. "People must register in the database. The donor cards alone are no longer issued."
Heather Higgins and her sister Alyshia Van Veen formed the York Region Gift of Life after their father, Malcolm Higgins, suffered a critical brain injury in a 2010 car accident. Their father was a real joker and very rarely serious about things, said Higgins, but he suggested each family member sign an organ donor card when they turned 16, and made his desire to be a donor well known to the family.
"My Dad had made sure to have that conversation with each and every one of us and we knew exactly what he would have wanted," she said. "We chose to honour his decision to donate his organs."
It's always a horrible and emotional time for families to be faced with such a decision, but knowing others would benefit was a huge help, added Higgins.
"We knew that there were three other families out there that were receiving some of the best news of their lives while we were receiving some of the worst news of ours."
Families of organ donors and recipients can exchange anonymous letters but their identities are kept confidential. However, because of her advocacy on behalf of organ donations, Higgins got to meet the man who received her father's lungs, and said it was an "incredibly emotional" experience.
"It was so rewarding to be able to see up front the impact that my Dad had on this man's life," she said. "He was telling us about the things that he was able to do as a result of having the transplant that he wasn't able to do before, even things that we take for granted like being able to walk up and down a flight of stairs without being winded."
Even if people are registered donors, families must agree before organs or tissue can be harvested. Families "overwhelmingly" consent when their loved ones are registered donors, but if they aren't registered, only about half the families give their consent, said Gavsie.
"Families are always required to consent," she said.
Trillium now advises people to also get a power of attorney, although it is not necessary to have one in order to be an organ donor.
"Make sure that you register and that your family knows what you want to happen," said Pascale Daigneault, president of the Ontario Bar Association. "And to make sure your wishes are followed, have a power of attorney so that your attorney can make those decisions for you if you can't make them."
One organ donor can help save up to eight lives, while people who donate tissue, which includes skin, eyes, bone and heart valves, can "enhance" up to 75 lives, although Gavsie thinks the distinction is almost irrelevant given the changes that are made in recipients' lives.
"A heart, liver or lungs are often called life saving," she said, "but when you consider that someone has been given the gift of sight and was previously blind, their lives changed so dramatically I would call it life saving."
April is "be a donor" month.