Counting the true cost of cancer: How ICES data helped power a landmark report
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Cancer is more than a disease—it can be a life-altering diagnosis that brings significant financial burden to individuals, families, and the healthcare system. A report released last December by the Canadian Cancer Society (CCS) quantified that impact in dollars and cents: Canadian Cancer Statistics: A 2024 special report on the economic impact of cancer in Canada shines a light on the staggering cost of cancer nationwide. The collaboration between ICES, the Canadian Partnership Against Cancer (CPAC), CCS, the Public Health Agency of Canada, Statistics Canada, and other partners, is a powerful example of what is possible when organizations work together to make data meaningful.
The report is the first of its kind, offering national and provincial estimates of the economic burden of cancer, which was found to be nearly $33,000 per patient, including out-of-pocket medical and non-medical expenses and income lost during treatment and recovery. Within just a week of release, it reached more than 200 million media impressions, highlighting the public and policy interest in understanding the full toll of cancer.
Behind this milestone report is a complex model called OncoSim, the only pan-Canadian cancer microsimulation tool. OncoSim is led and supported by the CPAC with model development by Statistics Canada and funding by Health Canada. Since 2008, OncoSim has been helping researchers and policy makers predict how changes in screening and treatment could affect outcomes and costs. But as cancer care rapidly evolves, so too must the data that feeds these projections.
Preparing the 2024 Special Report provided an opportunity to update the treatment cost data used in the OncoSim model. Cancer treatments today are more personalized and expensive than they were a decade ago. Drug costs have risen, and treatment options have evolved, including more outpatient care and newer technologies. Without accurate costing of treatments and services, the economic projections wouldn’t reflect the real-world experiences of patients or the system.
ICES data analysis expertise strengthened cost estimation
CPAC partnered with a team of researchers at ICES’s Applied Health Research Question (AHRQ) initiative to update the treatment cost estimates using real-world data from Ontario’s health system. Guided by ICES adjunct scientist and health economist Dr. Claire de Oliveira, the ICES team—Kaitlyn Chiasson, Refik Saskin, Drew Wilton, and Stefana Jovanovska—conducted in-depth analyses using linked administrative health data to estimate the costs of cancer care across the full continuum: diagnosis, treatment, follow-up, and end-of-life.
The updated cost estimates were then integrated into OncoSim, making the model more relevant, robust, and ready for use, not only in this report but for future planning and evaluation across the country. The result was economic burden projections that more accurately capture what cancer care truly costs, down to the level of specific cancer types.
“These numbers really show how much cancer affects people in Canada and the health system financially,” said Darren Brenner,Professor at the University of Calgary and OncoSim Advisor. “Breaking the data down by cancer type gave us updated estimates of healthcare costs and showed how those costs have grown over time.”
According to the report, the financial burden is particularly heavy for individuals from equity-deserving groups and those living in rural or remote communities—populations who already face barriers in accessing care. These findings make clear that addressing cancer’s economic toll is also a matter of health equity.
“This report from the Canadian Cancer Society reveals the profound financial burden cancer places on patients, caregivers, and the healthcare system,” said Dr. Craig Earle, CEO of CPAC and senior scientist at ICES. “These insights were made possible through access to the exceptional data resources at ICES. The findings underscore how individuals from equity-denied groups, as well as those living in rural and remote communities, often bear an even greater share of this burden. To truly support all people in Canada, we must work to reduce the financial strain of cancer care and eliminate barriers to high-quality prevention, screening, treatment, and support. Access to objective, rigorous data is essential to driving this change.”
By combining ICES’ significant expertise in health data with CPAC’s leadership in modelling and strategic planning, the result is a pan-Canadian tool grounded in real-world evidence that is positioned to guide decisions.
The tool is already in use. The cost estimates from this report are being used to inform decisions on screening programs, equitable care delivery, and where to invest to reduce the burden of cancer for Canadians. As more decision-makers turn to the data, the hope is that policies and investments will follow suit, ensuring a cancer care system that is more effective, more equitable, and more sustainable.
“When policies and investments are shaped by the lived realities of people with cancer and their families, we move closer to a cancer care system that reflects not just efficiency, but empathy,” says Dr. Jennifer Gillis, Director of Surveillance at the Canadian Cancer Society. “These cost estimates offer more than insight—they can help decision-makers better understand the financial challenges faced by people with cancer and their caregivers. By highlighting critical gaps in our healthcare system, our hope is that these findings guide more compassionate, evidence-informed decisions that reduce financial strain, improve access, and ultimately lead to better outcomes for people across Canada.”
For ICES, this work underscores the ongoing value of real-world health data in informing decisions that affect lives. And for Canadians facing cancer, it’s one more step toward a future where care is not only more accessible and effective, but also less financially devastating.
