A Day on the Hill: Why Every Voice Matters in the Fight for Kidney Health

By Kevin Longino, National Kidney Foundation’s (NKF) CEO and Kidney Transplant Recipient

Advocacy plays a crucial role in improving kidney health outcomes.

I recently had the privilege and the experience of two impactful days of meetings on Capitol Hill. On Wednesday, June 4, 2025, I held meetings with the offices of Senators Grassley (R-IA), Young (R-IN), and Hyde-Smith (R-MS), focusing on federal support for HRSA’s OPTN Modernization initiative.

Then, on Thursday, June 12, I returned to lead NKF’s Board of Directors Hill Day alongside twelve dedicated board members. Together, we spoke up for kidney patients nationwide, advocating for better policies, programs, and funding that can truly save lives.

• What Is HRSA OPTN Modernization and Why Does It Matter?
• NKF Board Hill Day Highlights
• Key Kidney Health Legislation
• The Power of Storytelling in Advocacy
• The Importance of Persistence and Resilience
• Moving Forward Together
• Top 3 Takeaways
• Making Your Voice Heard

The OPTN Modernization initiative aims to reform the organ transplant system, making it more equitable and efficient.

It is precisely the kind of forward-thinking investment our patient community needs and deserves. It's about creating a more efficient, equitable system that can adapt to medical advances and serve patients better by putting patients at the center of the system. This, of course, requires more transparency and investments in data.

Modernization is also about improved oversight and accountability of everyone in the transplant system, including the oversight agency (HRSA). But it only happens with sustained commitment from Congress, and that requires voices like ours to keep making the case.

That’s why NKF board members emphasized the need for continued federal investment to improve organ allocation, address organ non-use, and reduce wait times for kidney transplants.

But our advocacy didn’t stop there. 

NKF also presented a full spectrum of kidney health priorities to congressional staff.

Our priorities include:

• Protecting Medicaid: For many kidney patients, Medicaid isn't just health insurance—it's survival. We shared real stories about how Medicaid coverage enables access to dialysis, transplant care, and essential medications that keep people alive while they wait for transplants.
• NKF Innovation Fund: We educated Congress about the work NKF is doing to promote and accelerate innovative approaches to kidney care. This fund represents our commitment to fostering the next generation of treatments and technologies that can transform patient outcomes.
• Kidney Disease Research: We advocated for increased federal investment in research that addresses the root causes of kidney disease, develops more effective treatment options, and explores prevention strategies.

With kidney disease affecting 1 in 7 American adults, these priorities aren’t just important—they’re urgent.

Our board members also discussed the policy changes needed to support kidney patients, including three key pieces of legislation:

• Living Donor Protection Act: This bipartisan legislation would protect living organ donors from insurance discrimination and job loss, encouraging more people to consider donation.
• Improving Access to Home Dialysis Act: This bill expands access to home dialysis, giving patients more control over their treatment while reducing healthcare costs.
• Kidney Disease Education Access and Expansion Act: Improves early detection and education about kidney disease to help healthcare professionals catch and manage kidney disease early. 

Learn more about NKF's legislative priorities.

We didn’t just share data—we told stories. About 37 million Americans live with chronic kidney disease, and over 800,000 people are in kidney failure.  Behind every number is a patient, a family, or a life interrupted by kidney disease. Our Board members shared their personal experiences with kidney disease, putting faces to the statistics.

Upon hearing these stories, congressional staff asked thoughtful questions:

• How will OPTN modernization help patients?
• How does research funding make a difference?
• What barriers do patients face in accessing home dialysis?

These weren’t just conversations. They were real engagements with public servants who wanted to understand and help.

Change in Washington doesn't happen overnight. Most times, you face delays or a hurdle of some kind.  But I’ve learned that every conversation plants a seed. Every fact sheet shared, every story told, and every question answered contributes to a growing understanding of why kidney health must remain a national public health priority.

Our board members ensured kidney health priorities, from Medicaid to research funding, were heard loud and clear.

These meetings were significant steps forward, but our advocacy work on these topics is far from finished.

In advocacy, what matters most is staying informed, engaged, and persistent. Every meeting, call, and story shared helps move us forward. Whether you're a patient, provider, or passionate supporter, your voice makes a difference.

The fight for better kidney health isn’t just in hospitals or labs; it’s in the halls of Congress and communities across the country.

It’s a fight we can win—together. Become a Voices for Kidney Health advocate today.

Together, we’ll make sure kidney health is a national public health priority.