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Edmonton researcher at centre of new national program helping Canadian transplant patients
Linda Hoang, CTV Edmonton
Published Monday, April 22, 2013 12:36PM MDT
Last Updated Monday, April 22, 2013 6:23PM MDT
Experts from the University of Alberta are at the centre of a world first – a new national transplant research program that aims to help Canadians waiting for transplants and extend the lives of those who have already received one.
The Canadian National Transplant Research Program, announced Monday, will develop new knowledge and health care practices to address barriers to tissue and organ donation and aims to increase the availability of transplants for Canadians in need.
Until now, researchers have worked within their own provinces. The CNTRP is the first program in the world to bring together and integrate solid organ transplant, bone marrow transplant and donation and critical care research communities from across the country.
“By working together, we should be able to investigate barriers to improve the availability of transplants fro all patients who need them, to improve the safety of transplants so we can have better long-term results and fewer complications, as well as to improve the efficacy of transplants so we can improve the quality of life of patients who have been transplanted,” said Dr. Lori West said, a heart transplant researcher and Edmonton doctor who spearheaded the national program.
“It’s only by linking across the country that we can really look and realize the potential of Canadians in terms of increasing organ donation effectively for all those patients waiting.”
West, along with other local and national experts, spent the last year creating a network for 105 organ and bone marrow specialists from 13 research centres and universities across Canada.
“The way it’s organized has great potential to be truly transformative for the health of Canadians, both for patients who are waiting for transplants as well as for patients who have had transplants,” West said.
Program gives patients hope
The program is welcome news for Joel Congo.
His four-year-old daughter Sara received a heart transplant just a few months ago.
"We were totally blessed. Our life was changed because somebody donated," Congo said.
"It's so good to see that the research and the work is going on here is really impacting these lives."
Doctors have told the Congo family Sara may need another heart in 15 years but the family is hopeful new research will help Sara keep the heart she currently has.
Lorna Langer has been waiting 10 years for a double lung transplant.
She is living with Cystic fibrosis that's only getting worse.
"You don't know if it's coming or going. One day you can feel great and the next day you can feel like crapm" Langer said.
"I've had good days, I've had bad days."
Langer's size has made it difficult for her to receive a transplant.
"Because I'm only 4'10" I'm waitin for pediatric lungs and there's not very many of those that come by," Langer said.
But Langer has just received news her mother and sister are both matches and soon they'll each be donating part of their lungs.
"The surgeon okayed it last week. I'm hoping this week we'll have a date within the month," she said with a smile.
Since 2007, only two living lung transplants have occurred in Alberta.
Langer hopes the new national program will encourage more people to donate.
"I've waited for 10 years so hopefully with this progress other people won't have to wait so long," she said.
"A lot of people pass away waiting, and that's sad when there's organs out there that can help so many people."
A lifetime of waiting?
Currently 4,500 Canadians are waiting for a transplant.
It is estimated 30-40 per cent of those waiting for a transplant will never receive one in their lifetime.
“At the moment Canada lags behind, organ donation lags behind a number of other countries that have undertaken innovative strategies to increase donations,” West said.
"We'd like to increase organ donation by at least 20 per cent in the next five years, if not more."
According to the Canadian Institute for Health Information, of the transplant candidates who died waiting in 2010:
- 24 per cent were heart patients
- 22 per cent were liver patients
- 19 per cent were lung patients
- 16 per cent were kidney and pancreas patients
The program's goals are to:
- Increase the availability of transplants
- Extend the longevity of grafts
- Improve the long-term survival and quality of life of transplant patients
- Develop and enhance the pool of researchers and clinicians in the field of transplantation
- Integrate and coordinate transplantation research nationwide
A local project within the research program will investigate the possibility of financial incentives as a way to increase organ donation numbers. E
Experts recently completed a survey which found that about 70 per cent of the general public supports financial incentives to increase deceased organ donation.
West says researchers jumped at the chance to be involved in the groundbreaking program, and it's shared research and a co-ordinated effort that will make the difference for Canadians in need of transplants.
"It could have been that researchers in one place just sort of say, I can do this in my silo but we can only really make progress effectively if we break down the silos and link people together," West said.
"This is how we will effectively impact the health of Canadians."
The CNTRP is receiving $13.85 million in funding, with $11.25 million provided by the Canadian Institutes of Health Research's program grant in transplantation and $2.6 million contributed by six other organizations including Canadian Blood Services and the Canadian Liver Foundation.
With files from Carmen Leibel