For Canadians living with pancreatic cancer, timely access to innovative treatments can mean the difference between hope and despair. Yet, the current drug approval system in Canada is marked by delays, secrecy, and inequities, leaving patients without access to life-saving therapies that are available in other countries.
At The Heather Cutler Foundation, we are advocating for drug approval transparency to ensure that patients, caregivers, and advocacy groups are informed, included, and empowered in decisions about access to new treatments.
The Current Challenges
1. Delayed Approvals
Drugs approved by regulatory bodies like Health Canada often face prolonged negotiations with the Pan-Canadian Pharmaceutical Alliance (pCPA), delaying access by years. For pancreatic cancer patients, who have an average survival of just 3.8 months after diagnosis, these delays are devastating.
- Example: Onivyde, a chemotherapy drug proven to extend survival in pancreatic cancer patients, was approved by Health Canada in 2017 but remains inaccessible due to stalled funding negotiations. Over 7,800 years of life have been lost in Canada due to delays in making Onivyde available.
2. Lack of Transparency
The drug approval and funding process is shrouded in secrecy, with decisions made behind closed doors. Patients, advocacy groups, and even healthcare providers are left in the dark about the status of negotiations or reasons for delays.
3. Geographic Inequities
Even when drugs are approved, access varies by province, creating a system where patients’ outcomes depend on where they live. Smaller provinces with fewer resources face significant challenges in providing access to new treatments.
What We’re Fighting For
1. Streamlined and Transparent Approval Processes
- Public Updates: Require the pCPA and Health Canada to provide regular, transparent updates on the status of drug approvals and negotiations.
- Accountability Deadlines: Set and enforce time limits for the completion of negotiations, ensuring patients aren’t left waiting indefinitely.
2. Equitable Access Across Provinces
- National Drug Funding: Establish federal funding programs to ensure equal access to approved therapies across all provinces.
- Support for Smaller Provinces: Allocate additional resources to help smaller provinces implement access to newly approved drugs.
3. Inclusion of Patient Voices
- Advocacy Representation: Include patient advocacy groups in the drug approval and pricing processes to ensure the real-world needs of patients are considered.
- Transparent Criteria: Publish clear criteria for approval decisions so patients and caregivers can understand why treatments are accepted or rejected.
Accountability Measures
To ensure progress, we must hold decision-makers accountable for timely and equitable access to life-saving therapies:
- Approval Timelines: Track and publicly report the time it takes for drugs to move from Health Canada approval to provincial availability.
- Geographic Access Data: Analyze provincial disparities in drug access and address funding inequities.
- Patient-Centered Metrics: Collect data on how delays and access barriers impact survival rates and quality of life for patients.
Why This Matters
For pancreatic cancer patients, time is not a luxury—they cannot wait years for access to proven therapies. Drugs like Onivyde have been shown to extend survival, yet Canadian patients remain excluded due to bureaucratic delays and opaque decision-making processes.
Canada lags behind countries like the United States, where organizations like the Pancreatic Cancer Action Network (PANCAN) have successfully secured federal funding and driven faster drug approvals. It’s time for Canada to catch up and prioritize the lives of its citizens.
Heather’s Story: A Call for Change
Heather Cutler’s experience highlights the human cost of Canada’s broken drug approval system. As a nurse and mother, she fought tirelessly to explore every possible treatment option. But the barriers she encountered—from delays in drug availability to a lack of clear information—made an already difficult journey even harder.
Her story is not unique. Every day, 16 Canadian families receive the devastating news of a pancreatic cancer diagnosis. Without access to timely and effective treatments, many are left without hope.
At The Heather Cutler Foundation, we believe that patients deserve better. By demanding transparency and accountability in drug approvals, we can create a system that prioritizes life-saving treatments and offers hope to families across Canada.
The time to act is now. Join us in advocating for drug approval transparency and help us ensure that every Canadian living with pancreatic cancer has access to the treatments they need.