Overview:
Cancer remains the leading cause of death in Canada. An estimated 2 in 5 people living in Canada will be diagnosed with cancer in their lifetime and about 1 in 4 will die from cancer. In 2024, 247,100 people living in Canada are estimated to be diagnosed.[1] With an ageing population, the number of people diagnosed with cancer and cancer mortality is projected to rise significantly in the coming decades. While our health care system is pushed to the brink, people living with cancer continue to face barriers at every step of their cancer journey.
The reality is people in Canada living with cancer are dying while they wait for care. Many are faced with the impossible choice of putting food on the table or taking on significant debt as they struggle to afford the out-of-pocket costs associated with a cancer diagnosis, such as, drugs and treatments, medical transportation and accommodation and loss of pay due to inability to work, among other costs. For underserved and equity-deserving populations in Canada, these challenges are even greater.
Recommendation 1:
The Government of Canada, in collaboration with the provinces and territories, patients, caregivers, and patient groups, should advance investments in measurable value-based patient outcomes in cancer
While the bilateral agreements between the Government of Canada and provinces and territories will see much-needed investment in the health system, these investments need to be directed towards the improvement of measurable value-based patient outcomes in cancer.
This may be achieved through the implementation of the pan-Canadian cancer data strategy to support the development of publicly available dashboards that regularly report on important cancer care metrics, as well as strengthening pan-Canadian oncology federated data networks.
We cannot fix what we cannot measure. We don’t know if the public dollars invested in our care systems are having the desired impact unless we have data to measure that.
The pan-Canadian cancer data strategy outlines three areas for investment and focus:
- Increase the efficiency and ease of data access to cancer data that is currently collected, while improving the timeliness of data capture and availability, and build on guidelines and standards, including data quality indicators.
- Modernize and sustain infrastructure for cancer data interoperability, making diagnostic and treatment data, primary care data and genomic data accessible and linkable.
- Fill gaps that exist in current data collection, specifically, investments in data collection on social determinants of health, patient-reported outcomes and experience, survivorship, palliative and end-of-life care.
Having better data will help to improve cancer prevention, access to care and outcomes – making cancer care in Canada better and more equitable – because it will focus cancer research and inform policy decisions. Investments in the modernization of data collection and the cancer data strategy will play an important role in making data more compatible, and easier to share information across different systems.
Canada’s care systems continue to lag in their ability to quickly and rapidly use existing research and evidence to improve the health of the populations they serve, in ways that are affordable, patient centered, financially sustainable, and equitable. To add to this challenge, our care systems are pushed to the brink and siloed.
Strengthening cancer data collection, access and linkages will lead to a learning health system that incorporates research within cancer care delivery, informed by quality improvement and care, to speed up evidence use and impact.
Recommendation 2:
Establish the practice of ensuring an equity lens is applied to all federal decisions related to cancer care funding.
With cancer on the rise in Canada, the Canadian government must ensure an equitable approach is taken any time decisions are made in relation to cancer care. Greater systematic equity requires a better understanding of socio-economic barriers faced by all segments of Canadian society.
During this time of economic uncertainty, with affordability top of mind for many Canadians, a cancer diagnosis only adds additional financial pressure. A 2024 study shows cancer costs – including medication, transportation to and from appointments, and caregiver expenses – can range from an average of $253 to as much as $550 per month.[2] In the circumstances where an individual must either take a leave of absence or resign from their job, these financial costs make an even larger impact. The costs relating to cancer in Canada such as direct healthcare system costs and out-of-pocket expenses was an estimated $26.2 billion in 2021 with patients and their families being responsible for 30% of these costs.[3] The added cost of a cancer diagnosis leaves some patients with no choice but to go without the care and treatments they need.
With the ongoing affordability crisis, Canadians should not have to manage both a cancer diagnosis and the costs associated with cancer treatment.
For individuals living in rural and remote communities, access to healthcare is an ongoing issue, especially for those living with life-threatening conditions such as cancer. People in rural in remote areas are more likely to die from cancer.[4] Travelling to appointments and treatments, as well as a lack of access to information becomes an additional barrier.
To ensure an equity lens is applied to cancer care funding and health care accessibility, it is important for Canada to collect race-based data. Currently, there are gaps in data collection preventing members of racialized communities from accessing necessary healthcare. These gaps are a result of structural and systemic racism within healthcare that cause member of racialized communities to not feel comfortable going to healthcare providers.[5] Until we have focused strategies aimed at helping stakeholders collect this data, the government and healthcare providers will not have a clear understanding of the experiences of racialized patients in the health care system. To implement an equity lens, the government and its partners must understand the experiences and priorities of racialized groups.
Inequality relating to gender and cancer is an increasingly highlighted issue in Canada. Currently, government policy around early detection is a barrier for women. A recent study shows how rates of breast cancer in women under the age of 50 are rising in Canada due to women being diagnosed at later stages, when the cancer is more aggressive. This worrying phenomenon is occurring because women not being regularly screened. [6] There is a clear barrier around diagnosis and treatment of Canada among women and the government must apply an equity lens when allocating funding.
Additionally, the Federal government has a key role to play in advancing cancer strategy priorities that close the gaps in cancer care and outcomes between First Nations, Inuit and Métis and other people in Canada. This includes investments to advance culturally appropriate care closer to home, peoples-specific, self-determined cancer care and First Nations-, Inuit- or Métis-governed research and data systems.
Understanding the financial burden associated with a cancer diagnosis and the impact on groups facing barriers such as individuals living in rural and remote communities, racialized groups and gender inequality is critical. This is why we are asking the federal government to apply an equity lens to all decision making for funding cancer care in Canada and support a better understanding of the current inequities that exist.
Recommendation 3:
Reduce the cost of cancer drugs, foster a research ecosystem of innovation, and continue to provide safeguards to existing access to drugs that are already available to patients
On average, Canadians wait two years for access to new medicines through public drug plans following drug approval from Health Canada. This is double the average time reported in several other high-income OECD countries. According to a report from the Conference Board of Canada in 2022, it took a minimum of 28 months for life-saving treatments and drugs to reach 50 per cent of public plan beneficiaries.
People in Canada living with cancer are waiting for far too long to get the treatments they need.
We need concerted action at all levels to streamline processes and explore an expedited review and approval pathway for novel and innovative cancer treatments. The Government of Canada can also play a key role in supporting provinces and territories in ensuring equitable access to these treatments for people in Canada living with cancer.
Additionally, as countries around the world accelerate their genome-based testing readiness, Canada’s health systems cannot afford to fall behind. Improved access to genomic testing can ensure patients, care providers and the health system can benefit from where science and innovation is today and where it is headed in the future. While provincial and territorial governments need to address the gaps in their current infrastructure to foster an environment for improved adoption and access to genome-based testing, the Government of Canada can play a key role in supporting and driving this momentum.
Conclusion:
Canadians participate in a lottery every time they have a brush with the cancer care system. Addressing this inequity will require concerted action from federal, provincial, and territorial governments, informed by the experiences of health care providers across the cancer care continuum, patients, caregivers, and equity-deserving groups that are navigating the cancer care system in different parts of the country.
More silos will only make these challenges worse. The federal government working with jurisdictions can tackle important priorities to improve cancer care in Canada, with particular attention on strengthening cancer data systems, improving timeliness and access to treatments, and ensuring an equity lens is applied to all decision-making in cancer care.
Important signs of progress will be when we see more Canadians diagnosed with cancer at earlier stages, fewer diagnosed with late-stage cancer, and those living with cancer not just surviving but thriving. This will mean our cancer care system is truly responsive to the needs of Canadians it serves.
About Cancer Action Now:
As a national alliance of patient organizations, professional associations, and life science companies, we are witnessing the problems our cancer care system and patients living with cancer are facing. We have come together to call on government to address the unprecedented challenges – from screening to diagnosis and treatment – so people in Canada living with cancer have a chance to live longer, better lives than anywhere else in the world.
[1] https://www.cano-acio.ca/page/CANCER_FACTS#:~:text=Cancer%20remains%20the%20leading%20cause,86%2C700%20will%20die%20from%20cancer.
[2] https://cancer.ca/en/get-involved/advocacy/cost-of-cancer
[3]https://www.cmaj.ca/content/cmaj/196/18/E615.full.pdf?utm_source=sudbury.com&utm_campaign=sudbury.com%3A%20outbound&utm_medium=referral
[4] https://cancer.ca/en/about-us/our-health-equity-work/rural-and-remote-communities
[5] https://cdn.cancer.ca/-/media/files/about-us/our-health-equity-work/underserved-communities-report_2023_en.pdf?rev=17ad3c41ed3b4b3abd99a33482b89d2a&hash=C8D25526630D310980C8B79DA73EB7D6&_gl=1*1s9x569*_gcl_au*NzE4NDcxNzQ1LjE3MjA3MTM4MDQ.
[6] https://www.uottawa.ca/about-us/media/news-all/breast-cancer-rates-rising-among-canadian-women-their-20s-30s-40s