Why Your Voice Matters: Understanding Legislative Advocacy for Kidney Cancer
This is a guest post by Avanthika Rajendran, the Kidney Cancer Association’s Legislative Advocacy Intern.
What Is Legislative Advocacy?
Legislative advocacy is about educating decision-makers and helping them understand how public policy decisions impact the people and communities we care about.
It has four simple goals:
IMPACT: As someone who has experienced cancer first-hand, you are in a powerful position to share unique insights that can advance policy change for medical progress.
EDUCATE: Your lived experience informs policy decisions in ways statistics never can.
INFLUENCE: You can shape the development of effective public policies.
RELATIONSHIPS: You can develop champions and become a trusted resource for your elected officials and community.
Why This Matters Now
Between fiscal year 2024 (FY24) and the recently passed 2026 Congressional budget, kidney cancer received the least recovery of any cancer program when Congress restored funding after prior cuts.
Legislative advocacy isn’t about competing with other diseases; it’s about making sure kidney cancer is included in federal research funding discussions. When patient communities actively engage with Congress, their needs are better understood and prioritized.
Advocacy vs. Lobbying
Worried advocacy sounds like lobbying? Here’s the difference:
Advocacy is educating and influencing policymakers—sharing your story, providing information, and building relationships.
Lobbying is specifically asking legislators to vote yes or no on particular bills. More here.
Both are legal and valuable. When you share your story about why research funding matters, that’s advocacy. When the Kidney Cancer Association asks you to contact your representative about a specific bill, that’s a grassroots lobbying effort. Your voice is legal, valuable, and needed.
How to Get Started
You don’t have to do everything. Start where you’re comfortable!
VOTE: The most direct and primary language of democracy
WRITE: Letters to your representatives, emails, action alerts, social media posts
CALL: Quick 2–3-minute calls to your representative’s office
MEET: Attend town halls or meet with representatives locally; also, another chance to see your community
JOIN: Participate in organized advocacy days and coalitions
The Direct Connection
When kidney cancer patients advocate:
- Congress understands that kidney cancer affects its constituents
- Representatives learn about research funding needs and patient barriers
- Kidney cancer becomes part of the healthcare policy conversation
- Funding decisions are informed by patient experiences, not just budget numbers
When patient voices are absent:
- Policymakers lack information about the impact of kidney cancer
- Funding needs aren’t clearly communicated
- Opportunities for research support may be missed
- The patient perspective is missing from policy decisions
The Federal Research Funding Landscape
Over the last year, there has been a lot of news coverage of federal funding for research, specifically cancer research. One key federal program in the mix is the Congressionally Directed Medical Research Programs (CDMRP). It is the largest funder of biomedical and academic research within the Department of Defense.
CDMRP operations are contingent on the Department of Defense budget, which is appropriated, or allocated, through an annual budget bill that Congress votes on each year. As of today, CDMRP funding supports nearly 40 research programs spanning most cancers, traumatic brain injury, and other chronic diseases like Parkinson’s Disease. To put this into perspective, CDMRP has reviewed over 153,433 research proposals and funded 22,456 awards, providing $19.7 billion to research organizations, through allocations from 1992 to 2024.
When the Kidney Cancer Research Program (KCRP) was established in 2017, it accelerated kidney cancer research by investing over $135 million to fund high-risk, scientifically innovative research aimed at improving detection and treatment for both military and civilian populations.
The KCRP Funding Journey
The drastic change in funding history is concerning for future efforts.
Kidney Cancer Research Program (KCRP) Funding Timeline – 2017-2026
2017 — $10 million
- The Kidney Cancer Research Program receives $10M in federal funding, marking the beginning of sustained congressional support for kidney cancer research through CDMRP.
2018 — $15 million
- Advocacy efforts by the kidney cancer community help increase funding to $15M, expanding grant opportunities for translational and clinical research.
2019 — $20 million
- Congress increases the program to $20M, enabling more investigator-initiated grants and collaborative research projects.
2020 — $40 million
- A major jump to $40M, reflecting growing recognition of kidney cancer research needs and strong advocacy efforts.
2021 — $50 million
- Funding increases again to $50M, the highest level to date for the program.
2022 — $50 million
- Congress maintains $50M, allowing continued support for multi-year research projects and clinical investigations.
2023 — $50 million
- Funding remains $50M, bringing the 2017–2023 total to about $235M invested in kidney cancer research through the program.
2024 — $50 million (continued support)
- The KCRP again receives $50M contributing to a 2017–2024 cumulative investment of roughly $285M in kidney cancer research through CDMRP. FY 2025: Cut to $0 – eliminated
2025 — $0 million
- Due to a continuing resolution to fund the federal government in 2025, Congress eliminated KCRP’s funding entirely resulting in $0 for the program. Overall, CDMRP funding was reduced by 57%. Read the KCA’s statement on “Why we must restore funding for the CDMRP”.
2026 — $15 million
- Congress’s proposed fiscal year 2026 budget partially restored KCRP funding to $15 million.
When Congress votes on budget decisions and then restores funding, they analyze every program. When you compare FY24 to FY26, the funding levels across all CDMRP programs that were cut and then refunded, kidney cancer received the least recovery and had the most significant funding gap out of any cancer program, thus losing its hard-earned momentum from 2017.
What gets lost in this issue is realizing that research funding doesn’t happen automatically. It requires advocacy.
What You Can Do Right Now
Step 1: Know who represents you → Find your representatives
Step 2: Learn about the issues
Stay informed about kidney cancer research funding and policy by subscribing to our KCA newsletter or following KCA’s social media channels.
Step 3: Use your voice
Contact your representatives when kidney cancer research funding is being discussed. Even one letter makes a difference.
The Bottom Line
Every treatment you have access to today was federally funded through research grants that someone advocated for and fought for.
Kidney cancer research funding is not guaranteed. Every dollar must be fought for. Every year, Congress decides how much money CDMRP receives.
Your voice in that decision isn’t just helpful, it’s essential. You’re not taking something away from anyone else; you’re making sure kidney cancer is part of the conversation. You’re making sure the subsequent innovative treatment gets funded and that future patients have the option you wish you’d had.
You already know CDMRP matters. Now it’s time to make sure Congress knows it too.
Interested in learning more about advocacy? Contact us at [email protected] to share your thoughts on how KCA can support kidney cancer patients in policy discussions.
Want to understand how research funding works? Read up on the appropriations process and the Kidney Cancer Research Program.