Around 3,000 people across Canada are currently waiting for a kidney transplant. The wait can take years and is never guaranteed. Every year, hundreds of people die before a kidney becomes available. 

According to 2021 statistics from the Canadian Institute for Health Information, adult patients spent an average of 3.9 years on dialysis before receiving a deceased donor kidney and 1.5 years before receiving a living donor kidney. Fortunately, a dedicated team of researchers and people with lived kidney transplantation experience in Ontario has been working for nearly a decade to raise awareness about and improve access to living kidney donation.  

Their efforts have gained traction across Ontario and are beginning to spread to other provinces. 

Living donor transplants offer better long-term outcomes than those from deceased donors, including a higher chance of success and a longer lifespan for the person receiving the transplanted organ. For someone to donate one of their kidneys to a person with kidney failure is a significant gift, but it’s also a complex and time-consuming process. Potential donors must undergo many medical tests to ensure they’re eligible to donate, while also absorbing a lot of information to help them make an informed decision. 

Yet the benefits of a successful living donation cannot be overstated. It gives the recipient a functioning kidney and freedom from dialysis—which can take a severe physical and mental toll on patients—and it’s better for the health care system. While the initial cost of a transplant can be higher, the ongoing costs of dialysis, including medication and hospital visits, make it more expensive over time. 

A little peer support goes a long way

In 2016, the Can-SOLVE CKD Living Donor Kidney Transplantation project launched with a two-pronged approach. 

Patient partners with firsthand experience as kidney donors and recipients created a peer support network through the Transplant Ambassador Program (TAP), aimed at providing hope and information to kidney patients. As volunteers, they began visiting dialysis and kidney care clinics to speak with patients about the benefits of living donation and answer questions. 

Susan McKenzie received a kidney from her sister-in-law in 2010 and has been an advocate for living donor transplants ever since. She has helped lead TAP since its inception. “You can’t listen to the concerns of patients without wanting to do something about it,” she says. 

From those first conversations in dialysis clinics, TAP has grown into a powerful movement. The team developed a formal onboarding process for volunteers, and TAP has expanded from a few dozen “ambassadors” to more than 230 who, collectively, speak 27 languages. Since the COVID-19 pandemic, the program has expanded to provide peer support not only in clinics, but also through video calls, phone, and email. To date, TAP has logged more than 10,000 conversations. 

They also launched PatientsSeekingDonors.ca, a website that helps kidney patients connect with potential donors. The website establishes credibility and enables patients to raise public awareness of their needs without initially providing personal contact information. McKenzie says several patients have found a donor through the site since it launched in 2022. 

The impact of TAP is immediate and personal. “If you’re a TAP Ambassador, you don’t need a research study to tell you you’re making an impact,” McKenzie says. “You hear it in the patient’s voice, and they tell you that you’ve made a difference for them. That is a very big motivator.” 

TAP has recently expanded to the Atlantic provinces, and groups in Quebec, Manitoba, and BC have expressed interest in adopting a similar model. 

Changing the system

While TAP focuses on raising awareness and providing peer support, the research team has also been working to improve the living donor process in transplant centres across Ontario. 

Dr. Amit Garg, a nephrologist with London Health Sciences Centre, along with Susan McKenzie, Drs. Kyla Naylor, Seychelle Yohanna, and Istvan Musci, and others, first tested a large, multi-pronged intervention—combining administrative, educational, and performance strategies—designed to help improve access to transplants and living kidney donation for eligible patients. Through the trial, they successfully engaged a diverse set of partners, worked together to implement the intervention, created educational materials, and developed a new data-sharing agreement that allowed kidney programs to receive detailed performance reports for the first time.  

Dr. Amit Garg (r.) with patient partner Susan McKenzie (l.)

The trial, which was impacted by the COVID-19 pandemic, did not show the impact they had hoped for. So, the team pivoted. 

They convened a large forum of patients, donors, clinicians, and administrators to gather input on the major barriers and facilitators to living donation. A key finding was that transplant centres in Ontario use different protocols and data systems, making the process inconsistent across the province. The team is now working with centres to harmonize practices and create a province-wide scorecard to track how centres are improving living donor evaluations.   

Streamlining donation with a one-day clinic 

At the same time, they piloted a new approach to streamline the process for potential donors. Traditionally, completing an evaluation can take a year or more, with long waits between multiple medical appointments. To address this barrier, the research team, led by Dr. Yohanna, piloted a “one-day” donor clinic where donors could complete nearly all required assessments in a single hospital visit. “If they’re not eligible [to donate], they get a clear answer right there and then,” explains Garg. 

The results were striking. Ninety-eight per cent of participants said they were satisfied with the experience, reporting minimal disruption to their work and personal lives. Since its pilot in Hamilton in 2019, the model has been adopted at three of Ontario’s five transplant centres. 

By reducing travel, time off work, and logistical hurdles, the one-day clinic makes living donation more accessible—especially for people with fewer financial resources or less flexible jobs. It also reduces strain on the health system by streamlining care. 

Next, the team will interview patients and care providers, including people from diverse cultural backgrounds and those living in rural and remote areas of Ontario, to identify remaining barriers to living kidney donation.  

The power of passionate patients

Both Garg and McKenzie emphasize that patient partners have been central to the project’s success. TAP began with Can-SOLVE CKD’s funding support but has since become self-sustaining. 

To keep the program running, McKenzie and her team established a non-profit, Kidney Patient and Donor Alliance Canada, which raises funds for essentials like posters, volunteer vests, and website maintenance. 

“Can-SOLVE planted the first seeds, but we’ve gone beyond that model to 100 per cent patient-led activities and projects,” McKenzie says. “It feels very rewarding.” 

“We persist in our pursuits,” says Garg. “When we realize a better system that provides timely support for every individual to receive a life-changing kidney transplant, we will have contributed to something meaningful.”   

Visit the Living Donor Kidney Transplantation project page to learn more. For more information on TAP, check out their website for resources, news, and ways to support.