Elizabeth Myles
National Executive Director, The Kidney Foundation of Canada
Vince Andrews
Kidney Foundation Board Member & Transplant Hopeful
The Kidney Foundation of Canada advocates for disease awareness, self-advocacy, and federal recognition while involving patients in shaping a national framework.
Kidney disease affects 1 in 10 Canadians. Symptoms are silent and people can lose 50 per cent of their kidney function before they even start to notice anything is wrong.
Unlike your lungs or your heart, where it’s obvious what these organs do for your body, the kidneys are a bit more under the radar as they work to remove waste and fluid from the body, help to make red blood cells, and regulate blood pressure.
When someone’s kidney function decreases or their kidneys fail, treatment options include dialysis or kidney transplant.
The Kidney Foundation of Canada’s programs and services can help people navigate the lifelong impacts of kidney disease. The Foundation advocates on behalf of Canadians at every level of engagement, from municipal to provincial to federal governments, and empowers patients to advocate for their own health care needs.
When voices come together to advocate for change, good things can happen, especially when it’s done through an organization as prominent as The Kidney Foundation.
Critically, The Kidney Foundation of Canada amplifies the collective patient voice to influence change at a societal and political level.
“We work with patients and their loved ones to empower them to make change happen,” says Elizabeth Myles, National Executive Director of The Kidney Foundation of Canada. “Self-advocacy — be it at a doctor’s office or in a letter or in the media — is a powerful tool to achieving better care for all kidney patients and those at risk.”
Patient voices in action
Vince Andrews, who is on dialysis and has often advocated for both himself and other patients, couldn’t agree more. “Nothing is more impactful than a patient speaking of lived experience with emotion,” he says. “We reveal our vulnerabilities when we share.”
Andrews’ commitment to self-advocacy started early, when he began dialysis treatment. During his introductory phase for dialysis, he was given a piece of literature which mentioned the importance of patients being their own advocates. He took this advice to heart.
Self-advocacy — be it at a doctor’s office or in a letter or in the media — is a powerful tool to achieving better care for all kidney patients and those at risk.
“Who is more invested in our outcomes than patients ourselves? You’re speaking to medical experts, but they don’t fully understand what your own body, mind, and emotions are telling you,” says Andrews. “The psychological factor is strong. When you advocate for yourself, some people may feel as though they’re questioning authority. I don’t look at it like that. You’re taking care of yourself and you have way more insight. Speak up and ask questions. Get clarity from your health care professionals.”
Whether it’s calling on provincial governments to change their policy around organ donation or fighting for proper access to treatment or medication and getting on the government’s radar, patient advocates have done it all.
Andrews points to a recent example where patients collaborated with The Kidney Foundation to deliver impactful results. “The foundation participated in advocacy during COVID,” he says. “Not all areas had dialysis patients on the priority list for vaccinations. Their vulnerability and the high probability of bad outcomes from COVID were real. We got that changed.”
Impactful advocacy
“When voices come together to advocate for change, good things can happen, especially when it’s done through an organization as prominent as The Kidney Foundation,” says Andrews. “It’s a much stronger voice. I feel the foundation really comes into play — it’s recognized as the voice of the kidney community in the country. And it’s important as it can identify where advocacy is needed.”
The Kidney Foundation has more important advocacy work ahead.
“The Public Health Agency of Canada currently doesn’t recognize kidney disease as a chronic disease in Canada,” says Myles. “This highlights the critical need for us to advocate at all levels for improvements in prevention, diagnosis, treatment, research, and access to care. The Kidney Foundation is developing a national framework for chronic kidney disease. Gaining federal government support is critical. To achieve this, we’re incorporating as many perspectives as possible to ensure the framework reflects the real-world needs of those living with kidney disease.”
At the end of the day, the most important people in this work are those living with kidney disease and their families. “The Kidney Foundation is lucky to be able to tap into an amazing network of patient advocates like Vince who have been fighting for greater awareness of kidney disease,” says Myles.
The Kidney Foundation wants to hear from you! To find out more about our advocacy work and how you can get involved, visit the advocacy section of our website at kidney.ca and share your voice by telling us your story.
