Heidi, who lives in Ontario, has a unique and deeply personal triple-sided view of the impact of one of Ontario’s major chronic illnesses – kidney disease. It is a progressive, life-threatening condition that develops silently and is often diagnosed only after irreversible damage has occurred.

It must be treated with dialysis or a kidney transplant. Neither is a cure, just a vital means of keeping people with kidney disease alive. Dialysis often requires an hours-long hospital visit every few days. Patients bear the burden of gaps in prevention, early detection and disease management, spending countless hours receiving dialysis while waiting for a transplant.

Heidi is a dialysis patient, as well as a dialysis nurse. She’s also the sister of Eric, who died in 2023 after being on dialysis for 21 years and living with a successful kidney transplant for nine further years. Heidi, who has a rare genetic disease called Alport Syndrome, as did Eric, was able to keep her disease in control until she was 40 years old, at which point her kidney function started declining rapidly. She started dialysis two years ago, at age 45.

Her experience with her brother inspired her to pursue a career in nursing and for the past 25 years she has been a hemodialysis nurse, helping people with kidney failure and giving her a unique and valuable perspective on her work. Her patients realize she understands what they are going through.

Because they were born with their kidney disease, Heidi and her brother were diagnosed early and had access to interventions that helped delay disease progression. For many Ontarians, kidney disease remains undetected until it is much more advanced.

Kidney disease takes a big toll on the health system, costing $12 billion a year across Canada. Certain populations are at particularly high risk, including Indigenous Peoples in Canada, who are three times more likely to be affected.

For too many patients, the first sign of kidney disease is not a diagnosis in a doctor's office but a health crisis that sends them to hospital.

The solutions are not complicated. For chronic kidney disease, practical opportunities already exist to improve care. These include expanding early detection through primary care and community-based pharmacy screening for at-risk populations, strengthening coordinated and equitable access to care during the disease’s early stages, and better integrating chronic kidney disease diagnosis and management with diabetes and cardiovascular care.

These same principles apply across many chronic diseases. By identifying conditions earlier, connecting patients to care sooner and managing related conditions together, we can help people stay healthier for longer while reducing avoidable pressure on hospitals and emergency departments.

Far too often in Ontario, people go without tests or put up with mild symptoms without realizing the consequences of letting things go. Undiscovered and untreated diabetes can lead to serious organ  failure. Easily treatable high blood pressure or cholesterol can become serious heart disease or lead to a heart attack. What first presents as urine irregularities can be predictors of chronic kidney disease. Breathing difficulties can become lung disease, while joint pain may simply be tolerated until it becomes debilitating arthritis.

Too often problems or symptoms are treated in isolation. Those treating a patient for one chronic condition often don’t learn about or have time to investigate fully to find and treat other potential serious health issues, even though many Ontarians have more than one serious chronic disease. For example, kidney disease rarely exists in isolation. It is closely linked with conditions such as diabetes, high blood pressure and cardiovascular disease, making coordinated care essential to preventing serious complications.

Helping Ontario residents much earlier in their healthcare journeys – at the upstream end of the system, with screening and early treatment, as well as easily accessible specialized care from different types of specifically trained health professionals – is a much more cost-efficient way to reduce healthcare costs while vastly improving patients’ lives as they age by helping to prevent conditions from advancing to serious illness.

Heidi’s experience with chronic kidney disease shows that the earlier chronic disease is identified and treated, the greater the opportunity to avoid serious complications, improve quality of life and reduce pressure on the healthcare system. It starts by making sure that diagnosis and care begin upstream, not in an emergency room.

That would help prevent chronic diseases from placing an even greater burden on patients and Ontario's healthcare system.

Act earlier. Improve outcomes. Strengthen Ontario's health system.

Life Sciences Ontario, Health Charities Coalition of Canada, Diabetes Canada, The Kidney Foundation of Canada, Asthma Canada and HeartLife Foundation have developed a series of evidence-based policy modules focused on diabetes, cardiovascular disease, chronic kidney disease and asthma. Together, they outline practical opportunities to improve prevention, screening, diagnosis and care.

Explore the full chronic disease strategy at https://lifesciencesontario.ca/ontario-chronic-disease-strategy/ 

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