The Need for Systemic Change in Pancreatic Cancer Care

Pancreatic cancer remains one of the deadliest cancers, with survival rates still at just 10%—and a devastating 3% for those diagnosed at Stage IV. Despite these heartbreaking numbers, Canada’s healthcare system continues to delay life-saving treatments, restrict access to clinical trials, and leave patients navigating a system that too often fails them.

Patients in smaller provinces bear the brunt of these inequities, facing significant gaps in access to testing, clinical trials, and even basic awareness about pancreatic cancer care. They are forced to advocate for themselves in ways no patient should ever have to, simply to receive the care they need.

At the Heather Cutler Foundation, we believe this must change. Advocacy groups have worked tirelessly to empower patients to navigate a fractured system. But advocacy shouldn’t have to fill in for systemic failures. National pathways for pancreatic cancer care, backed by federal commitment and accountability, would mean equitable, consistent care for all patients—regardless of where they live.

Craig’s Cause: A Partner in the Fight

Craig’s Cause Pancreatic Cancer Society has been instrumental in driving progress in pancreatic cancer research and education. Their recent publication in Current Oncology—a review from the 2023 Canadian National Pancreas Conference—provides critical insights into the systemic changes needed to improve outcomes. Their work strengthens the case for national frameworks and underscores the importance of collaboration between advocacy and research in driving meaningful change.

Key Insights from Craig’s Cause

1. National Standards Are Essential

   • Multidisciplinary care models must become the norm across Canada.
   • Patient-reported outcomes (PROMs) and experiences (PREMs) should guide improvements and hold systems accountable.

2. Clinical Trials Must Be Accessible

   • Expanding access to trials requires hybrid models combining virtual and in-person options.
   • Financial support for patients in smaller provinces is critical to overcoming geographic inequities.

3. Universal Access to Testing

   • Germline and biomarker testing must be federally funded and standardized, ensuring equal access for patients across provinces.

These findings lay the foundation for the systemic changes we advocate for, particularly the need for equitable access in smaller provinces where gaps in care are most severe.

The Heather Cutler Foundation’s Framework for National Pathways

At the Heather Cutler Foundation, we believe that pathways only succeed when they are clear, actionable, and accompanied by accountability. Here’s how we envision the systemic change that patients desperately need:

1. Set National Standards for Pancreatic Cancer Care

Key Insights

• Collaboration among healthcare providers is essential for creating multidisciplinary teams and seamless care models.
• Measuring PROMs and PREMs ensures patient experiences drive improvements and accountability.

Our Vision

• Biomarker and Genetic Testing for All: From the moment of diagnosis, every patient should have access to these critical tools.
• Dedicated Care Navigators: Families need trusted guides to support them through testing, trials, and treatment plans.
• Clinical Trials as Standard Care: Trial opportunities should be integrated into care pathways for all eligible patients.

Accountability Measures

• Testing access rates by province.
• Clinical trial participation data broken down by geography and demographics.
• Adherence to national guidelines across provinces.

2. Expand Clinical Trial Access Nationwide

Key Insights

• Decentralized trials, supported by hybrid care models, can make participation accessible for underserved communities.
• Providers must be educated to connect eligible patients with trial opportunities proactively.

Our Vision

• Decentralized Trials: Patients in smaller provinces should have access to trials through hybrid in-person and virtual care models.
• Travel Subsidies: Financial barriers must be eliminated for patients who need to travel for trials.
• Provider Training: Equip healthcare teams with tools to identify and connect patients with trials.

Accountability Measures

• Geographic distribution of trial sites.
• Financial support metrics for patients in underserved areas.
• Retention rates for trial participants, especially in smaller provinces.

3. Guarantee Access to Biomarker and Genetic Testing

Key Insights

• Biomarker and germline testing must be readily available, starting at the point of care.
• Cascade testing for families with predisposing mutations can enable early detection and prevention.

Our Vision

• Federally Funded Testing: No patient should be denied testing because of cost or geography.
• Streamlined Referral Networks: Partnerships with regional centers must ensure seamless access to testing and results.
• Public Awareness Campaigns: Patients must understand the life-saving importance of testing.

Accountability Measures

• Provincial testing rates analyzed by region and demographics.
• Outcomes linked to biomarker-driven treatments.
• Time from diagnosis to test completion.

Accountability: A Commitment to Progress

Pathways without accountability are just promises on paper. Accountability ensures national pathways deliver real progress, closing the gaps that patients in smaller provinces face every day.

Recommendations for Accountability

1. Data Transparency

   • Provinces must report publicly on biomarker testing rates, clinical trial participation, and adherence to national standards.
   • Data must be broken down by region to identify inequities and gaps in care.

2. Patient-Centered Metrics

   • PROMs and PREMs must be collected nationwide to measure care quality and outcomes.
   • Patient Impact Assessments: Conduct assessments to measure how policy changes affect patient survival rates and quality of life, with a focus on identifying remaining barriers.

3. Federal Oversight Task Force

   • A dedicated task force should monitor progress, issue updates, and ensure smaller provinces receive the resources they need.

4. Incentives for Progress

   • Provinces meeting or exceeding benchmarks should receive additional funding and support.
   • Collaboration between advocacy groups, healthcare providers, and policymakers should address systemic barriers proactively.

Heather’s Story: Why We Fight

Heather Cutler’s journey is the reason we fight for change. As a nurse, mother, and tireless advocate, she encountered systemic barriers that no one living with pancreatic cancer should face: missed testing, limited options, and inequities that made survival harder than it needed to be.

Her experience revealed the cracks in Canada’s healthcare system and inspired our mission to demand a better future. Until national pathways become a reality, advocacy remains a lifeline. Pathways would mean that those living with pancreatic cancer no longer need to rely solely on their own voices—because equitable care would become the standard.

Turning Pathways Into Progress

The federal government must commit to the pathways outlined in our petition, ensuring equitable, life-saving care for everyone. With clear accountability measures, these pathways can close gaps, address disparities, and bring real progress across Canada.

At the Heather Cutler Foundation, we believe no one should be held back from the best outcomes because of where they live or the failures of the system. Advocacy has brought us this far, but it’s time for action. Together, we can turn pathways into progress—and change the outcome for those living with pancreatic cancer across Canada.

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