What Our Community Thinks About Advocacy
This is a guest post by Avanthika Rajendran, the Kidney Cancer Association’s Legislative Advocacy Intern.
If you’ve ever thought about speaking up for kidney cancer research funding or patient protections but felt a wave of anxiety about where even to begin, you’re in good company.
Spoiler: A lot of us feel the same way.
Every year, the Kidney Cancer Association conducts a needs assessment to ensure we are filling gaps and reaching more patients. We recently surveyed our kidney cancer community to understand how people feel about legislative advocacy. The results? Eye-opening, honest, and deeply reassuring. Because it turns out, most of us share the same hesitations.
“I Don’t Know Where to Start”
When we asked what prevents people from getting involved in advocacy, the number one barrier wasn’t time. It wasn’t politics. It was uncertainty and hesitation.
36% said their biggest barrier is simply not knowing where to start.
That’s more than one in three people who want to help but feel stuck at the starting line. And if that sounds like you, keep reading. You’re exactly who we’re writing this for.
“What If I Do Something Wrong?”
Here’s the second most common concern: 28% of respondents worry about making mistakes.
Will I say the wrong thing? Contact the wrong person? Accidentally hurt the cause I’m trying to help.
These fears are valid. Advocacy can feel like unfamiliar territory, with its own language, rules, and rhythms. But here’s what we’ve learned: there is no “wrong” way to share your story or ask a legislator to support kidney cancer research. Authenticity matters more than perfection.
“I’ve Heard of It, But…”
Our survey found that familiarity with advocacy is all over the map:
- 11% feel very familiar with legislative advocacy
- 33% feel somewhat familiar
- 22% have heard of it but don’t understand it well
- 30% aren’t familiar at all
That means more than half of our community is still learning what advocacy even looks like, and that’s completely okay. No one expects you to walk into this as an expert.
We’ve put together a brief guide to understanding what legislative advocacy is and why it matters. Read it here.
What Actually Motivates People to Act?
Despite the barriers, many in our community have taken that first step. When we asked what motivated them, three responses tied for the top:
- “Personal experience with kidney cancer” – 46%
- “I want to help others” – 46%
- “I felt it was my responsibility” – 46%
Close behind: 42% cited frustration with the healthcare system.
Sound familiar? These aren’t professional lobbyists. They’re patients, survivors, and caregivers who decided their voice mattered. And it does.
The Issues That Matter Most to You
We also asked what policy issues hit closest to home. Here’s what our community cares about most:
- Kidney cancer research funding – 63%
- Drug affordability – 56%
- Insurance access – 44%
- Survivorship care – 37%
- Employment protections – 33%
- Pre-existing condition protections – 33%
These aren’t abstract policy debates. They’re the realities of living with kidney cancer—and they’re worth fighting for.
What You Told Us You Need
The message from our community was clear: people are interested in advocacy, but they want guidance.
You asked for:
- Real-time updates on legislative developments
- Simple guides and templates
- Training webinars that walk you through the process
- Proof that your actions make a difference
You Don’t Have to Do This Alone
If there’s one takeaway from this survey, it’s this: the hesitation you feel is shared by hundreds of others in our community.
Not knowing where to start doesn’t mean you’re not ready. Being afraid of making mistakes doesn’t mean you’ll make them. These feelings are normal—and they’re not a reason to stay on the sidelines.
Advocacy doesn’t require expertise. It requires showing up. And when you’re ready, the KCA community will be right there with you to help you take that first step.
Stay up to date on important news and policy updates by signing up for the KCA’s monthly newsletter, checking our blog, and following our social media channels: Facebook, Instagram, LinkedIn, Twitter/X.
This Is Just the Beginning
We’re listening. And we’re using what you shared to build the resources our community needs to speak with one voice, because the kidney cancer community is stronger when we speak together.
In the meantime, know that your voice matters, and you’re not the only one still finding it.
The 2026 KCA Community Survey included information from about 60 respondents over about 3 months.