Speaking About the Unspeakable

The Barriers Nobody Talks About When most people think of colorectal cancer advocacy, they might picture statistics, awareness campaigns, or calls to get screened. But for Marielle McLeod, the work goes much deeper. Nine years out from her colorectal cancer diagnosis, Marielle has become a fierce advocate for the Latino community. Not just talking about screening, but confronting the cultural stigmas that keep people silent, suffering, and diagnosed at advanced stages. “We don’t talk about things like these,” she explains simply. “Oftentimes as Latino patients were diagnosed automatically at later stages, and we don’t really talk about our family history just like many other cultures.” The barriers are cultural, deeply rooted, and rarely discussed outside these communities. “We don’t like to discuss our poop just like a lot of people do, but it’s even more so that it’s really, really gross and we just suffer in silence because we don’t have anyone that we can go to,” Marielle says candidly. “Finding the courage to go to our medical provider and say, this is really happening to me takes a lot, particularly within our community.” This is the work of patient advocacy that nobody teaches you about in health class. The Unspeakable Topic That Saves Lives One of Marielle’s most powerful contributions to advocacy is her willingness to talk openly about colonoscopy prep, bowel symptoms, and all the things that most people would rather suffer in silence about. “It’s so funny too because it’s like who would’ve thought that in our advocacy we’d be doing so many conversations in regards to butts and poop and colonoscopy prep,” she laughs. “Now it’s just second language to us and we just talk to everybody.” She jokes that her staff gives her the side eye when she gets excited about someone getting a colonoscopy, becoming their “biggest hype girl” for the procedure. But this willingness to make the unspeakable speakable is exactly what breaks down barriers. For communities where these topics are taboo, where discussions about private parts, sexual intimacy, or bowel movements are simply not done, having someone enthusiastically, matter-of-factly talking about colonoscopy prep can be revolutionary. It normalizes the conversation. It makes it less shameful. It potentially saves lives. Breaking Down Barriers Through Education But talking about it herself is only part of the solution. Marielle’s real work is creating safe spaces where entire communities can learn to talk about these things. “We do have a lot of work in making sure that we provide a comfortable space to have these discussions. Regardless of what language we’re doing it in, we’re discussing a lot of very intimate details and information,” she explains. Her approach involves: Culturally appropriate materials that don’t just educate the individual receiving them, but are digestible enough that people feel confident sharing them with others—family members, friends, community members. Accessible language that respects both language barriers and health literacy, ensuring people understand not just the “what” but the “why” of colorectal cancer screening and awareness. Empowerment that goes beyond information-sharing—helping people feel confident enough to ask important questions of their providers about signs, symptoms, and treatment options. Comprehensive education that covers the full journey: screening, diagnosis, treatment options (regardless of age, access, or insurance coverage), and clinical trial options. Biomarkers: The Critical Information Nobody Explains One of the most important things Marielle advocates for is biomarker education—and she learned this lesson the hard way. Despite having 20+ years of healthcare experience before her own diagnosis, when she became a patient, “it all completely flew out the window.” When she finished treatment and stepped into advocacy, she started asking her doctors about her biomarkers. Their response? “Why do you need to know that?” But she persisted. And she discovered she was MSS (microsatellite stable). “I was like, well, I’m glad that wasn’t a factor in my treatment back then. Like what would I’ve done had that been what they were going to be putting me being a determining factor as to what my treatment was going to look like,” she reflects. This is why biomarker education matters so much. Your biomarker status determines: * What treatments you’re eligible for * How you’ll respond to specific therapies * Whether immunotherapy is an option * What clinical trials match your profile Even with a healthcare background, even with 20+ years of medical knowledge, Marielle didn’t fully understand her biomarkers until years after diagnosis. Most patients have far less medical knowledge. And yet, most patients are never fully educated on what their biomarkers mean and why they matter. Defining Advocacy: Giving Others Their Voice When asked to define advocacy, Marielle’s answer reveals why she’s been so effective: “For me, advocacy is helping others find their voice, empowering them to champion for others.” She emphasizes that advocacy looks different for different people. Some excel at policy work. Some at clinical trial research. Some in community settings. Some in industry partnerships. “There’s not a one size fits all, but in order for you to become a patient advocate, there’s a lot of work that goes on behind the scenes that others are not open to it or exposed to.” More importantly: you don’t have to be a patient to be an advocate. “You can still be an advocate regardless of what your role is, because the intention behind it is definitely that driver for you. We’re here to help others, not to elevate ourselves.” This reframing is crucial. Advocacy isn’t about making yourself visible. It’s about empowering a community larger than yourself. The Four Buckets of Advocacy: Finding Your Strength Marielle aligns with the framework of advocacy having four distinct areas: 1. Awareness — This is where Marielle spends the majority of her time, helping people understand their power, their opportunities for knowledge and education. 2. Clinical Trial Advocacy — In recent years, this has become a major focus for her, working with SWOG, FDA, and DOD on clinical trial design and patient participation. 3. Legislative — She doesn’t focus here primarily, but recognizes its importance and participates in opportunities like Call on Congress. 4. Fundraising — This is the one bucket Marielle intentionally avoids. As she says, “I’m great at all of these things. You need money. You tell me, I’ll be your hype person. I’ll recruit people for you. But I was like, I can never put myself in that fundraising capacity.” The beauty of this framework is that you don’t have to excel at everything. You find your strength and go deep there. Clinical Trial Advocacy: Bringing Patient Voice to Research Design One of Marielle’s key focus areas is ensuring that patients have a voice in clinical trial design from the very beginning. “What I do currently as a clinical trial research advocate is that we bring the patient voice into the various parts of clinical trial and design,” she explains. This includes: * Patient reported outcomes — What quality-of-life measures and functionality benchmarks need to be tracked? * Treatment toxicities — How do we acknowledge and prepare for the side effects patients will experience? * Practical considerations — How often will patients need to travel for appointments? What labs and blood work are required? What barriers might patients face in participation? * Access and equity — How do we bring trials into community centers, not just major NCI centers, so patients don’t have to travel hours or days? One of her biggest champions is bringing clinical trials to community centers—where many patients actually receive their care. “The data is important,” Marielle emphasizes. “A great deal of patients are being treated at community centers that don’t necessarily, by no fault of theirs, don’t have access to travel to the large NCI centers where majority … This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit www.advocacyatwork.com