Canadians in dire need of a kidney now have the opportunity to appeal directly to potential living donors thanks to a new service that allows them to share their photos and life stories in the hope of finding a matching transplant.
The new service is offered by the Transplant Ambassador Program (TAP), a Canadian support group for people with kidney disease. The site’s “Patients Seeking Donors” section takes inspiration from dating apps, where people post photos and share information about their lives in their call for potential donors.
“I’m basically begging this site to help me get a kidney transplant,” said Ron MacDonald, 64, who broke down in tears during an interview with CTV News.
The Ojibway community leader is a school principal in Wabaseemoong, Ontario. near Kenora. He has been waiting for a kidney transplant for more than six years and is losing hope.
“My health has deteriorated rapidly. I’m having difficulty breathing,” MacDonald said.
His wife Linda is exhausted. She hooks MacDonald up to her home dialysis unit, a device that cleanses her blood. She gives him time, but not a future like a transplant would. So MacDonald has posted his photo and profile on TAP’s website, along with an O-positive blood type donor request, a loss of privacy but an act of desperation.
People like MacDonald have been given the most difficult task of their lives, told by their doctors to “find a living donor,” said Susan McKenzie, co-founder of TAP.
There were 1,600 kidney transplants in 2021 across Canada. About two-thirds come from deceased donors. But in recent decades, supplies have never kept up with the growing demand from Canadians who develop kidney failure caused by diabetes, infections or other illnesses.
Last year, there were another 3,060 people across the country waiting for a transplant. Data of the Canadian Institute for Health Information shows that there are more than 23,000 patients who receive continuous dialysis treatments to stay alive, who at some point may need a transplant.
Statistics also show that a Canadian dies every three days because the wait for a deceased kidney donor can stretch from four to six years.
Therefore, the focus has shifted to finding healthy donors because there is a larger potential pool. But it is difficult for patients to search for potential donors.
“It’s a very, very crazy thing to ask people to do. The number one question we get from recipients is: how do I do that?” said McKenzie.
After a genetic disorder triggered kidney failure, McKenzie was told to find a new kidney. Fortunately, the search for her was shorter than most. Her brother-in-law had a compatible blood type and donated her kidney to him in 2010. She says she has been in good health ever since.
But her transplant motivated her to help guide others through the process. Some people turn to community and church groups or social media platforms in their search. But McKenzie said she has heard from many who don’t have families or don’t feel comfortable launching their own campaigns. That was the trigger for TAP’s “patients looking for donors” service.
‘GIVE HIM THE GIFT OF LIFE’
There are about a dozen people, mostly from Ontario, on the fledgling site, which is expanding to accept profiles from across the country. Patients can post photos and details of their medical journey along with the transplant center they are connected to. Those interested in donating a kidney can write directly to the patient or the transplant team where testing can begin.
“We offer the added security of a secure server and a temporary password for people who want more anonymity,” said McKenzie.
Potential donors can contact the patient directly or the transplant center they are registered with, which would initiate the process to screen them and see if they are a suitable donor. While there are risks to surgical removal of a kidney, including infection and the possibility that the donor’s own kidney will fail in the future, studies show that the risks are low in healthy people who function well with one kidney.
Stephanie Bouskill was one of the first to post her profile on TAP looking for a kidney donor. “The sooner the better,” said the 33-year-old from Burlington, Ontario. He receives dialysis at a clinic several times a week. He keeps her alive, but it’s an exhausting process.
“The days you don’t have dialysis, your kidneys don’t work. So everything you eat or drink and the toxins are in your body… your body is not working properly,” Bouskill said.
Dialysis is expensive, costing the health care system about $100,000 a year per patient in Canada, said Dr. Amit Garg, a kidney specialist at the London Health Sciences Center in London, Ontario. and advisor to the Transplant Ambassador Program. By comparison, the cost of a transplant hovers around $66,000 with ongoing costs of $23,000 a year later for anti-rejection drugs and monitoring recipients, he told CTV News.
It makes promoting live transplants a cost-saving measure, Garg said.
“If more people receive transplants through this mechanism, that means a shorter waiting list for the deceased donor. So everyone benefits,” he added.
Another benefit of the TAP site is that it can be attractive to donors who do not wish to donate anonymously, which is the standard for most living donor programs. Canadian Blood Services is the leading national site connect living donors with recipients. But most live transplants are done anonymously.
“We’ve talked to a number of donors who would rather know that they’ve made a difference and that they can see that person in their mind and know that what they did really benefited someone,” McKenzie said. TAP will direct donors to the Canadian Blood Services site if they prefer an anonymous donation.
Ethically, the site raises some questions, including the possibility of what University of Manitoba ethicist Arthur Schafer calls a “popularity contest.”
“Patients who are vulgar, old, wrinkled, racial or ethnic minorities are likely to be overlooked. Not always. Not all. But often.” she wrote in an email to CTVNews.
That could lead to an injustice that would be balanced only if more living kidney donors came forward and “lives that would otherwise be lost and suffering are saved,” he wrote.
However, McKenzie said that altruistic donors who are willing to sacrifice a kidney often want it to go to the person who needs it most, and he doesn’t see this as a problem. However, the “Patients Seeking Donors” section of the site is new and has yet to facilitate a transplant match.
With the exception of Nova Scotia, no Canadian province has adopted a “presumed consent” program for organ donation, in which people who die and are healthy are presumed to be organ donors. Other countries, such as Spain, have promoted the supply of organs from deceased donors through presumed consent.
But until that becomes law across Canada, organ donation remains a popular “idea” among Canadians, but it’s not something they subscribe to, ethics experts say.
“We wouldn’t need such a website if more people signed up for organ donation,” according to Schafer and Charles Weijer, a bioethicist and professor at London’s Western University.
He cites statistics from Ontario showing that only 35 percent of adults are registered to donate organs if they die. “Living organ donors give the gift of life. While some make the decision on their own, we know that stories move people – they create a human connection,” he said of the Transplant Ambassador initiative.
That’s exactly what Ron MacDonald hopes for. He and his supporters hope his story will connect with people willing to donate, particularly those with an indigenous background.
“I pray that this website provides an avenue for your community,” said Amanda Dale, a social worker in Muskoka, Ontario, who is helping MacDonald. “It’s not just her family, but … there’s trauma in the community.” losing someone like Ron.”