Carrie Thibodeau
National Director, Programs & Public Policy, The Kidney Foundation of Canada
Sean Delaney
Two-time Kidney Transplant Recipient
The Kidney Foundation of Canada is partnering with patients and healthcare providers to develop a national kidney disease framework.
Did you know that over four million Canadians have kidney disease? That’s 1 in 10 of us.
Despite this, there is no national framework for chronic kidney disease (CKD) similar to those for other chronic conditions like diabetes or dementia. By recognizing CKD as a major health priority, we can unlock new opportunities for innovative research, improve prevention, detection, and treatment, and ensure that everyone in Canada has access to the care they need.
The Kidney Foundation of Canada is developing a National CKD Framework to deliver meaningful change for patients, no matter who they are, where they live or where they are on their kidney journey.
Prevention, detection and treatment
“We have consulted with health professionals, patients, families, researchers, and other partners to help define advocacy priorities and identify the actions needed to transform kidney disease prevention, detection and treatment,” says Carrie Thibodeau, National Director, Programs and Public Policy at The Kidney Foundation of Canada.
”Key areas of focus that emerged during the consultation process were prevention, early diagnosis, and timely treatment, which are essential to intervening before people need a transplant or dialysis,” Thibodeau says.
Prioritizing kidney disease screening for at-risk populations and expanding access to medications that have been shown to delay or prevent the progression of kidney disease are important steps toward ensuring that all Canadians have access to the care they need.
Supporting new healthcare policies
Standardizing and improving data collection would inform and support healthcare policies that address inequities and improve quality of life for people affected by kidney disease. The Foundation is also calling for increased funding for research into innovative approaches to the prevention, diagnosis and treatment of kidney disease.
Early diagnosis and timely treatment are essential to intervening before people need a transplant or dialysis.
Sean Delaney is a two-time kidney transplant recipient. The Edmonton resident is part of the Foundation’s national framework team and has been speaking to patients across the country.
“We are pushing for more awareness in the broader community and among decision makers,” he said. “This has put me and our many volunteers, including healthcare providers and, most importantly, those with lived experience, into the halls of government and has allowed us to share our message.
“Sitting with a member of parliament or government employee, you don’t have to go very far into the conversation before someone says, ‘I have a relative who’s been down this road’ or ‘I know a living organ donor’. So many people are one or two steps removed from organ donation or chronic kidney disease. It personalizes the issue for decision makers.
“There has been really good dialogue. So this is an incredible thing The Kidney Foundation has done.”
The power of knowledge and connection
Delaney also appreciates the programs and resources The Kidney Foundation of Canada provides to patients and their loved ones. “The Foundation’s one-on-one or group peer support is probably the best starting point for a patient,” he says. “Care is a complicated process. You have to learn about treatment and who’s who on your care team. Peer support volunteers can help you figure it out and you don’t feel so alone.”
Thibodeau says the Foundation’s other resources include a patient handbook for newly-diagnosed patients and the KidneyInfo website, which provides customized support and information tailored to a patient’s kidney journey. The Kidney Community Kitchen helps patients manage all the dietary guidelines that come with kidney disease. It includes dietitian-approved recipes, a meal planner and an opportunity to ask general nutrition questions of registered dietitians.
Advocacy can help effect real change
“Systemic change is needed to increase access to kidney disease prevention and care,” says Thibodeau. “Today, there are effective treatments that can stop kidney disease in its tracks, but they’re not as widely accessible or consistently available across Canada as they should be. It’s crucial that people at risk are diagnosed early and have equitable access to these life-changing treatments.
“Advocating at the government level can make a meaningful difference in the lives of patients and caregivers. We can’t achieve this alone. Our best chance of success is for all of us to speak up and make our voices heard.”
Get involved: share your experiences, participate in advocacy efforts, support research initiatives.
