Advocacy Tools: How to Make Your Voice Count in the Fight Against Pancreatic Cancer

We didn’t know the power of advocacy until we experienced it firsthand. During my mom’s treatment, we pushed for molecular profiling—a test we hadn’t even heard of before. When our oncologist found a testing site that offered it free of charge, it opened new doors for us. But the real impact came after. She told us that moving forward, every pancreatic cancer patient at that hospital would be informed about molecular profiling. Before that moment, we didn’t ask many questions; we thought we had to just trust the process. That was our first real encounter with health advocacy, and it showed us what speaking up can achieve.

Advocacy can be a powerful force for change—especially with so much work to be done in improving outcomes for pancreatic cancer patients. At the Heather Cutler Foundation, we know change doesn’t come from staying silent. Far too many have been quiet for far too long, and the results speak for themselves.

In 2024, an estimated 7,100 Canadians will be diagnosed with pancreatic cancer, and 6,100 will die from it. According to the Canadian Cancer Society, pancreatic cancer has one of the lowest survival rates of all cancers in Canada. These statistics speak for themselves—we don’t have time to drag our heels. This guide provides practical tools and a clear plan to help you turn your awareness into meaningful action.

Educate Yourself: Knowledge is Power

No matter your approach, educating yourself as much as you can about pancreatic cancer is key. Organizations like Pancreatic Cancer Canada and Craig’s Cause provide valuable statistics, facts, and educational materials. Explore resources and equip yourself with the knowledge needed to make an impact.

You don’t need to have all the answers right now. Advocacy isn’t about solving everything yourself—it’s about joining a collective effort. If one person could fix this issue alone, it wouldn’t still be a problem. Every step you take, whether targeted or broad, contributes to the push for progress and brings us closer to better outcomes for patients.

Advocacy Etiquette: There’s a Difference Between Being Assertive and Yelling

Advocating for oneself or a loved one often happens daily, whether in personal, medical, or professional contexts. The essence of advocacy is recognizing when something isn’t right and taking action. But the way that you communicate can greatly influence how your message is received by your audience. Successful advocates communicate their needs effectively while also considering the perspective of others. Connectability, a website devoted to lifelong learning and support for people with intellectual disabilities outlines some great examples of good and bad advocacy.

Good Advocacy

Bad Advocacy

Step 1: Plan Your Course of Action

Before diving in, take time to reflect on what matters most to you. Just like in cancer treatment, advocacy can take different approaches. You might choose a precision medicine approach, targeting specific issues with focused efforts, much like pinpointing a specific mutation in cancer’s DNA. Or, you could opt for a chemotherapy-like approach, tackling a broader range of problems across the entire system, similar to how chemotherapy addresses cancer cells throughout the body.

Think of it this way: precision advocacy hones in on one critical issue, aiming for maximum impact with a targeted effort. On the other hand, broad-based advocacy acts like chemotherapy, casting a wider net to address multiple challenges and drive system-wide improvements. Both approaches are valid, and the choice depends on what resonates most with you.

Whether you’re pushing for faster drug approvals, advocating for expanded clinical trial access, or working to increase funding for pancreatic cancer research, the key is to define your approach and let it guide your journey.

Clarify Your Purpose and Set Your Vision 🔮

Start by asking yourself: What change do you want to see? Your goal could be broad, like increasing national awareness about pancreatic cancer, or more specific, like advocating for better access to clinical trials in your province.

Here are a few examples of focus areas to help you get started:

• Public Education: Increasing awareness about pancreatic cancer symptoms, risk factors, and the importance of early detection.

• Policy Advocacy: Pushing for changes at the governmental level, such as implementing national guidelines for pancreatic cancer care or expediting drug funding decisions.

• Patient Support: Enhancing resources and support services for patients and caregivers, such as access to specialized care or financial assistance.

Step 2: Identify the Problem

To make a meaningful impact, it’s important to have a deep understanding of the issue you’re addressing. Start by asking: What is the problem you want to solve?

Effective advocacy begins with understanding the issues at hand. While there are many problems impacting pancreatic cancer patients, here are three key examples to consider. These examples highlight critical areas where change is needed, but you can focus on any issue that matters most to you.

🔬 National Guidelines for Pancreatic Cancer Care: There are currently no consistent guidelines across Canada to ensure access to essential molecular profiling for all pancreatic cancer patients. Establishing national standards would help patients receive personalized, targeted treatments, leading to better outcomes.

🌍 Expanded Clinical Trial Access: Clinical trials are often concentrated in major cities, leaving patients in smaller provinces without options. Expanding access would allow Canadians in all regions to participate in precision medicine-focused trials without leaving their families behind, opening up opportunities for innovative treatments.

🔍 Drug Approval Transparency: The process for approving and funding new treatments often lacks clarity, leaving patients and families unsure about when they will have access to effective therapies. Greater transparency and clear timelines can help ensure Canadians receive timely access to approved treatments, improving quality of life and potentially extending survival.

📊 Use Data to Support Your Advocacy

Support your arguments with credible statistics and information from trusted organizations like the Canadian Cancer Society, Pancreatic Cancer Canada, and Health Canada. Presenting strong evidence will help you build a compelling case when speaking to both your audience and decision makers.

Step 3: Identify Key Decision-Makers

One of the most critical aspects of effective advocacy is knowing who has the power to make or influence decisions related to the issue you’re addressing. Without a clear understanding of who these individuals are, your message may not reach the people who can enact change. Instead of shouting into the void, focus your efforts on the right targets.

How to Identify Decision-Makers:

1. Research the Organizational Structure: Whether it’s a government body, a healthcare organization, or a non-profit, understanding the hierarchy can help you pinpoint the relevant decision-makers. Look for titles like Director, Chief Medical Officer, Health Minister, or Policy Advisor.

2. Start at the Local Level: It’s often easier to gain traction by starting locally. Contact your Member of Provincial Parliament (MPP) or local health authority representatives before reaching out to federal figures. Use the Parliament of Canada’s resources to find contact information for MPs (source).

3. Leverage Online Tools and Social Media: Platforms like LinkedIn and Twitter can provide insights into who holds key roles within organizations. Follow relevant figures, engage with their posts, and build a connection before making direct contact.

Step 4: Take Action and Amplify Your Voice

In the previous step you’ve identified key decision makers, clarified your focus, and gotten a well-researched understanding of the issues. Now it’s time to turn all that planning into action. Effective advocacy requires strategic use of multiple platforms, consistent communication, and a willingness to engage directly with decision makers. Here’s how you can get started:

🤝 Engage with Key Decision-Makers

Reach out to policymakers, healthcare providers, and advocacy organizations. Contact your local MP through the Parliament of Canada’s contact resources and present your case with clear data and personal stories (source).

💻 Leverage Digital Advocacy

Social media and digital platforms have made influential figures like policymakers and healthcare leaders more accessible than ever. Reaching out directly—whether through email, phone calls, or tweets—can be an effective way to get your message across.

Organize or Participate in Fundraising and Awareness Events

Engage your community through fundraising or join or host your own events like Light It Purple. Fundraising supports research and patient care, while awareness events help shine a light on the challenges faced by patients.

Conclusion: Persistence Pays Off in Advocacy

Throughout this guide, we’ve emphasized one key idea: advocacy isn’t a sprint—it’s a marathon. At The Heather Cutler Foundation, we’ve seen firsthand that real change doesn’t happen overnight. It’s built on sustained effort, resilience, and a refusal to give up, even when the odds are stacked against us. We’re here to act, not to wait, and we believe in the power of persistence to make a difference.

We’ve said it before, and we’ll say it again: there’s no such thing as failure in advocacy. If your efforts don’t go as planned, take time to pause, reflect, and adjust your approach. This isn’t about perfection—it’s about progress. The common saying, “Doing the same thing over and over and expecting a different result is insanity,” doesn’t always apply to advocacy. In fact, the opposite can be true: persistence, even when it feels repetitive, is often the key to making breakthroughs. Each email, phone call, and tweet you send is a step closer to creating the change we need for pancreatic cancer patients across Canada.

We know that the path to change can be long and frustrating. But the most impactful advocates are the ones who stay committed for the long haul, adapting and learning from every challenge. When you face setbacks, use them as opportunities to reflect, regroup, and try a different angle. Advocacy is a sometimes a journey of constant learning and adjustment, and every small action contributes to the bigger picture.

Don’t be deterred by setbacks. We won’t either. We’re here to demand real change for Canadians with pancreatic cancer and to push forward until every patient has access to the care they deserve.

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