Organ donor registry urged
Alberta ‘needs to step into the 21st century,’ says health critic
Kenny Maclean sounds frustrated when he describes what life was like before his kidneys failed.
“I used to spend a lot of time hanging out with my friends and I played in a band, but now that has all changed,” he said, two large clear tubes coming out of his left wrist, one to remove his blood and one to return cleansed blood.
The 29-year-old lies on what looks like a dentist chair for four hours at a time to undergo dialysis. He tries to read a book or watch television to pass the time, but he can’t relax. Restless, his leg begins to shake within the first hour.
In late July 2011, both of Maclean’s kidneys failed due to complications from diabetes. He was diagnosed with Type 1 diabetes when he was 12 years old. For the past five months he has been going to the University of Alberta Hospital, where all his blood is pumped through a dialyzer that acts like a kidney to clean it. He has dialysis three times a week. Without it, he would die.
The only cure for Maclean is new kidneys and a new pancreas. He has been on a waiting list since July. It could take up to two years before he will receive them, as they need to come from the same donor.
“If I could have a new kidney and pancreas, it would mean a fresh start for me. I want to go back to school and I want to have a career.”
Maclean remains hopeful. If he could get a transplant soon it would mean the world to him, but he knows realistically he might be in for a long wait.
In 2011, 556 people in Alberta were waiting for organ transplants.
In the past five years, 214 people died waiting for organ transplants in Alberta— the third highest number among provinces.
With a population of 3.7 million people, Alberta recorded 22,909 deaths from all causes between July 1, 2010, and June 30, 2011. Only a tiny fraction donated their organs.
In the past five years, 180 of those who died donated their organs and tissue.
British Columbia has a population of 4.5 million, and 117 people have died waiting for organ transplants the past five years.
In 1997, British Columbia created a provincial organ and tissue donor registry, which allows individuals to register as donors. When donors die, hospitals can immediately access registry records. For those who sign up, the registry is the final legal say on what to do with their organs and tissue, and no one can reverse that decision.
The situation in Alberta is much different. Albertans have to sign the backs of their health care cards. They also have to let their families know of their final wishes. But unlike B.C., families have the final legal say on whether to donate the organs and tissue of their loved ones.
Many people like the B.C. model because it makes more organs available and takes grieving relatives out of the equation.
Health care is a provincial responsibility and it’s up to the government to show some willingness to do something.
Dr. Norman Kneteman
Alberta MLA and Liberal health critic Dr. David Swann said the province is in desperate need of a donor registry. It would decrease wait times and improve inefficiencies in operating rooms, he said.
“The government has to establish a registry so that people know in a very timely way where and when an organ is available,” Swann said.
“We are not serving our population without having the capacity to register people, which also allows us to monitor how the system is working.”
Swann said a provincial registry has been in the making for the past 30 years — the first time it was discussed in the legislature was in 1981.
“Alberta needs to step into the 21st century. This is life-saving surgery we are talking about.”
Swann said while a national strategy for organ and tissue donation should be developed, a provincial effort is also required.
In 2008, the government announced it was considering creating an electronic donor registry, but it was put on hold because provincial and territorial deputy ministers of health were meeting around the same time to discuss a strategy to increase organ and tissue donation on a national scale, said Glenna Laing, manager of Alberta human tissue and blood services.
Canadian Blood Services was given a mandate by the provinces and territories to create three recipient registries, such as the living-donor-paired-exchange registry — meant to find compatible living kidney donor-recipient pairs, as well as unpaired donors who are willing to donate a kidney. The mandate also includes a highly sensitized patient registry — an effort to find dead donors for hard-to-match kidney patients — and a national organ waiting list.
Last April, Canadian Blood Services forwarded its recommendations to the provinces and territories. Alberta Health is looking at the recommendations and will report back this spring, Laing said. The government is not going to develop a provincial registry at this time because it is focusing on the national effort to improving the donation process, she said.
Dr. Norman Kneteman is the chairman of the Canadian Blood Services committee that developed the recommendations for the provinces. He said the report has been with the provincial government for the past nine months and it still has not shared the information with the public.
The registries that CBS has recommended have nothing to do with creating a provincial registry, said Kneteman, who is also the surgeon in charge of transplant services at University Hospital. It can help Alberta on a national level, but the majority of the work has to be done provincially, he said.
Alberta’s donor rates are the lowest in the country and the province must accept that there are serious problems with the organ and tissue donation process, he said.
“What we are seeing is the result of many years of a lack of attention and funding to the area.”
“Health care is a provincial responsibility and it’s up to the government to show some willingness to do something,” said Kneteman, who would like to see a provincial registry set up because it would help build donor awareness.