New service aims to match living kidney donors with Canadians in need of life-saving transplants

Canadians in dire need of a kidney now have a chance to directly appeal to potential living donors thanks to a new service that lets them share their photos and life stories in hopes of finding a transplant match.

The novel service is offered by 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 insights into their lives in their callout to potential donors.

"I'm basically pleading to this site to help me get a kidney transplant," said 64-year-old Ron MacDonald, who broke into tears during an interview with CTV News.

The Ojibway community leader is a school principal in Wabaseemoong, Ont. near Kenora. He's been waiting for a kidney transplant for more than six years and he is losing hope.

"My health has been declining rapidly. I have difficulty breathing,” MacDonald said.

His wife Linda is exhausted. She connects MacDonald to his home dialysis unit, a device that cleans his blood. It buys him time, but not a future like a transplant would. So MacDonald has posted his photo and profile on the TAP website, along with a request for O-positive blood type donors -- a loss of privacy but an act of desperation.

People like MacDonald have been given the hardest assignment of their lives, told by their doctors to 'go find a living donor,’ said Susan McKenzie, a TAP co-founder.

There were 1,600 kidney transplants in 2021 across Canada. About two thirds come from deceased donors. But over the past decades the supplies have never kept up with the growing demand from Canadians developing kidney failure caused by diabetes, infections or other diseases.

Last year, there were another 3,060 people across the country waiting for a transplant. Data from the Canadian Institute for Health Information shows there are more than 23,000 patients who receive ongoing dialysis treatments to sustain life, who may at some point need a transplant.

Statistics also show that one Canadian dies every three days because the wait for a deceased kidney donor can stretch four to six years.

So the focus has shifted to finding healthy donors because there is a larger potential pool. But it is a hard ask of patients to search for potential donors.

“That's a pretty, pretty crazy thing to ask people to do. The number one question we're getting from recipients is: how do I do that?" said McKenzie.

After a genetic disorder triggered kidney failure, McKenzie was told to find herself a new kidney. Fortunately, her search was shorter than most. Her brother-in-law had a compatible blood type and donated his kidney to her in 2010. She says she’s been in good health since.

But her transplant sparked 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's heard from many who have no families or don't feel comfortable launching their own campaigns. That was the trigger for TAP’s “patients seeking donors” service. 

'GIVE 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 centre they are connected to. Those interested in donating a kidney can write directly to the patient, or to the transplant team where testing can begin.

"We offer the extra security of a secure server and a temporary password for people who want more anonymity," said McKenzie.

Potential donors can contact either the patient directly, or the transplant centre where they are registered, which would begin the process to vet them to see if they are a suitable donor. While there are risks in surgically removing a kidney, including infection and the chance that in the future the donor’s own kidney may fail, studies show that the risks are low in healthy people who function well with one kidney. 

Stephanie Bouskill was among the first to post her profile on TAP searching for a kidney donor. "The sooner the better," said the 33-year-old in Burlington, Ont. She gets dialysis in a clinic several times a week. It's keeping her alive but it is a gruelling process.

"The days you don't have dialysis, your kidneys aren't working. So everything you eat or drink and toxins are in your body... your body's not working properly, "said Bouskill.

Dialysis is expensive, costing the health-care system roughly $100,000 a year per patient in Canada, said Dr. Amit Garg, a kidney specialist at London Health Sciences Centre in London, Ont. and an adviser to the Transplant Ambassador Program. By comparison, the cost of a transplant runs about $66,000 with ongoing costs of $23,000 a year after that for anti-rejection medications and for monitoring recipients, he told CTV News.

It makes promoting living transplants a cost-saving measure, said Garg. 

"If more people get transplants through this mechanism, that means a shorter waiting list for the deceased donor. So everyone still benefits," he added.

Another benefit of the TAP site is that it may appeal to donors who don't want to donate anonymously, which is the standard for most living donor programs. Canadian Blood Services is the main national site connecting living donors to recipients. But most living transplants are done anonymously.

"We've talked to several donors who would much rather know they've made a difference and they can see that person in their mind's eye and they know that what they did really benefit someone," said McKenzie. TAP will direct donors to the Canadian Blood Services site if they prefer an anonymous donation.

Ethically, the site does raise some questions including the possibility of what University of Manitoba ethicist Arthur Schafer calls a "popularity contest."

"Patients who are plain, old, wrinkled, belong to racial or ethnic minorities are likely to be passed over. Not every time. Not everyone. But often." he wrote in an email to CTVNews.

That could lead to unfairness that would be balanced only if more living kidney donors come forward and "lives are saved that would otherwise be lost and suffering is prevented," he wrote.

McKenzie, however, said that altruistic donors who are willing to sacrifice a kidney often want it to go to the person most in need, and doesn’t foresee this being a problem. However, the “patients seeking donors” section of the site is new and has yet to facilitate a transplant match.

Except for Nova Scotia, no Canadian province has adopted a “presumed consent” program for organ donations, where those who die and are healthy are assumed to be organ donors. Other countries, such as Spain, have boosted supplies of organs from deceased donors using presumed consent.

But until that becomes law across Canada, organ donation remains a popular “idea” among Canadians, but not something they sign up for, ethicists say.

"We wouldn’t need such a website if more people would register for organ donation," according to Schafer and Charles Weijer, a bioethicist and professor at Western University in London.

He cites Ontario statistics that show only 35 per cent of adults are registered to donate organs if they die.   "Living organ donors give the gift of life. While some come to the decision on their own, we know that stories move people---they create a human connection," he said of the Transplant Ambassador initiative.

That is exactly what Ron MacDonald is hoping for. He and his supporters hope his story will connect with people open to donating, particularly those with Indigenous backgrounds.

"I pray this website will provide an avenue for his community,” said Amanda Dale, a social worker in Muskoka, Ont., who is assisting MacDonald. "It's not just his family, but ....there's trauma there to the community by losing someone like Ron.”