There’s a common misconception about advocacy: that it’s something you do once and expect immediate results. But the reality is far more nuanced—and far more powerful. In a conversation with Anjee Davis, CEO of Fight Colorectal Cancer (Fight CRC), we explore how patient advocacy operates as a marathon, not a sprint. From breaking the stigma around colorectal cancer to securing funding and passing critical legislation, Anjee shares how authentic patient voices have fundamentally transformed the landscape of colorectal cancer care—and what that same approach could mean for other healthcare communities.
Defining Advocacy: It’s More Than You Think
When asked to define advocacy, most people think of policy work or congressional lobbying. But Anjee describes it as existing on a spectrum, with multiple valid entry points for engagement. “I think people define advocacy differently,” she explains. The first step might be as simple as sharing your story as a survivor and encouraging others to seek screening or information about treatment options. That’s advocacy.
But for some people, the desire goes deeper. They want their story to drive tangible change. That’s when they might transition into policy advocacy—engaging members of Congress, talking to local leaders, pushing for legislative action. And then there’s a third category: research advocates who are passionate about the science itself and work to guide clinical trials, review grant applications, and advance patient perspectives within the research community.
Fight CRC intentionally cultivates all three types. As Anjee says, “For our organization, we really want to empower people to move through the awareness into taking action.” The key is recognizing that not every advocate needs to be at the Capitol steps—but every advocate matters.
Breaking the Stigma: How One Campaign Changed Everything
When Anjee first began working in colorectal cancer 20 years ago, she encountered a problem that few people outside the community understand: patients were ashamed to talk about their diagnosis. Support groups for breast cancer, prostate cancer, and other cancers would be packed. Colorectal cancer support groups? Empty. When nurses asked why, the answer was clear: embarrassment. People didn’t want to admit they had cancer of the colon. They’d rather just say “cancer” and leave it at that.
This stigma became a barrier to everything—screening, advocacy, research participation, even community support. So Fight CRC launched a campaign called “1 Million Strong,” centered around something unabashedly colorectal: the selfie. But more than that, it was about giving patients a story they could be proud of. The campaign celebrated survivors as strong, hopeful, resilient, and beautiful. Critically, it also made space for people to talk openly about the disease—to say “poop,” to say “fart,” to normalize the conversation in a way that felt liberating.
“Over the last 20 years I’ve seen that change,” Anjee reflects. “There’s no certain look or feel to a colorectal cancer survivor.” Today, colorectal cancer advocates openly discuss their condition in the halls of Congress. Tim McDonald recalls going to a Florida representative’s office and explaining why colorectal cancer was the only top-five cancer killer without dedicated funding: “Breasts are kind of sexy to talk about. Nobody wants to talk about their shit.” The staffer loved it—and more importantly, the conversation shifted from shameful whisper to honest dialogue.
The Proof is in the Numbers: Measuring Long-Term Impact
One of the most difficult questions for any advocacy organization is: How do you measure success? Unlike corporate quarterly reports, advocacy impact unfolds over years and decades. But Fight CRC has found a way to demonstrate their effectiveness.
When Anjee dug into the historical data, she discovered a clear correlation: as the number of advocates going to Capitol Hill increased, so did federal funding for colorectal cancer research. They started with four people heading to Congress. Then 20. Then 100, then 200, then 300. Each wave of advocates resulted in more funding flowing from the Department of Defense budget and the National Cancer Institute to colorectal cancer initiatives.
But the impact goes beyond dollars. Fight CRC helped secure passage of the colonoscopy loophole bill—legislation that ensures patients have access to follow-up colonoscopies without facing unexpected bills. This alone has removed a massive barrier to care for thousands of patients. Yet this victory didn’t happen overnight. “It took us 10 years to get the colonoscopy loophole bill passed,” Anjee notes. This is the essence of advocacy as a marathon: the willingness to show up year after year, building momentum until change becomes inevitable.
Anjee emphasizes: “If someone had said, oh, you shouldn’t do it in year one because you didn’t move it forward, we wouldn’t have had that passed.” Long-term advocacy requires faith in the process and resilience in the face of slow progress.
From Storytelling to Science: The Three Paths of Advocacy
What makes Fight CRC distinctive is recognizing that not all advocates want to do the same work. Tim McDonald embodies this beautifully. He started as an ambassador sharing his story. He then became a policy advocate, heading to Washington DC to push for legislative change. Most recently, he’s become a research advocate, diving into the science and helping guide clinical trials and grant applications.
“You’re like the model advocate,” Anjee tells him. “You started with sharing your story and then started to push for legislation and then really got into the science.” But critically, Tim didn’t have to know from day one which path he’d take. Fight CRC introduced him to the different ways of engagement and let him discover his passion organically.
This three-tiered approach creates a robust advocacy ecosystem. Some advocates are brilliant at social media and digital storytelling. Others are policy wonks who live for legislative battles. Still others are scientifically minded and want to ensure research reflects patient priorities. A thriving advocacy organization needs all three.
The Reality Check: Staying True to Your Mission While Securing Funding
Running a nonprofit advocacy organization brings unique pressures. Funders want to see measurable outcomes. They want to know their money is being used effectively. But there’s a tension: what funders want to measure isn’t always what actually drives advocacy impact.
Anjee addresses this honestly and directly. “You got to say no, right? You can’t just take money and not have the transparency for both the funder and for yourself as an organization to be like, ‘Hey, we’re not aligned.’”
Rather than let funders dictate metrics, Fight CRC developed the Colorectal Cancer Care Report, a data-driven document that outlines evidence-based goals for the community. They set specific targets: 80% colorectal cancer screening for all eligible individuals. For patients who test positive on non-invasive screening, access to colonoscopy within 90 days (because data shows that without this follow-up, patients often disappear from the healthcare system entirely). Treatment access within six weeks. 80% of eligible patients receiving biomarker testing and genetic testing.
“The data was driving our decision on those numbers,” Anjee explains. This approach has been transformative because it allows Fight CRC to tell funders: “Here’s what we believe in, and here’s the evidence supporting it. Are you aligned with this vision?” It puts the organization in control of its mission rather than letting money dictate priorities.
This is rare in the nonprofit space—and it’s a model more organizations should consider.
The Dream: Removing Financial Barriers to Advocacy
When asked what she’d do with unlimited resources, Anjee’s answer is both simple and profound: “I would love to be able to scholarship any survivor who wants to go to Washington DC to share their story.”
Right now, the cost of traveling to DC for March Colorectal Cancer Awareness Month keeps many advocates away. Some can’t afford the flight, hotel, and meals. Some can’t take time off work. Some simply don’t have the financial means. But Anjee knows from Tim’s mentorship of new advocates that demand is there—and that the impact would be transformational.
“It would be magical,” she says. And Tim confirms it: “I know it would be probably double in a year if you would just open that up to anybody that wanted to go without having to worry about the funds to be able to get there.”
Removing financial barriers to participation in advocacy isn’t just nice—it’s transformative. It democratizes the advocacy space, ensuring that advocacy isn’t limited to people with resources, but is truly open to anyone with a story to tell and a desire to drive change.
The Journey: From Embarrassment to Empowerment
What stands out most in Anjee’s leadership of Fight CRC is her deep understanding of where the community started and how far it has come. When she joined the organization, advocacy work felt intimidating to many patients. They’d just been diagnosed, they were processing trauma, and suddenly they were being asked to talk to policymakers and researchers. It felt like too much.
So Anjee intentionally made the entry point lower. Tell your story first. Get comfortable. Build confidence. Then, if you want to, move into policy work or research advocacy. By creating a welcoming on-ramp rather than a daunting barrier, Fight CRC transformed thousands of patients into advocates.
The colorectal cancer community went from being too embarrassed to even acknowledge their diagnosis to proudly declaring themselves “1 Million Strong.” They went from empty support groups to packed advocacy events. They went from being invisible in policy conversations to being the driving force behind major legislative victories.
And they did it not through a single dramatic moment, but through a marathon of consistent effort, authentic storytelling, and unwavering commitment to the mission.
How to Get Involved
For anyone interested in joining the colorectal cancer advocacy community, the path forward is clear. Visit fightcrc.org to learn more about Fight CRC’s programs and initiatives. They’re active on Instagram, Facebook, and X. March is Colorectal Cancer Awareness Month, and every year brings an opportunity to get involved—whether that’s raising awareness in your community or traveling to Washington DC to share your story directly with policymakers.
If you’re interested in learning more or want guidance on how to get started, consider reaching out to someone like Tim McDonald, who serves as a mentor for new advocates heading to the Capitol. The advocacy community is welcoming, and there’s a role for every skill set and comfort level.
Final Thoughts
Anjee Davis’s leadership of Fight CRC demonstrates something critical about advocacy in healthcare: it’s not measured in quarterly earnings or immediate legislative victories. It’s measured in lives saved through increased screening. It’s measured in the courage it takes for a patient to stand in front of a member of Congress and say, “This matters to me.” It’s measured in a community that went from silent shame to unified voice.
The most powerful advocacy isn’t about having the loudest voice or the biggest budget. It’s about showing up, consistently, with your authentic story, year after year, until the systems that need to change finally listen. That’s the marathon that Anjee and Fight CRC have been running for years—and it’s working.
