Lisa Parker never thought she’d be living her life around dialysis treatments. Diagnosed with stage 4 kidney disease without warning, she found herself thrust into a whirlwind of medical appointments and treatments with little understanding of what was happening. “I didn’t even know what dialysis was,” Lisa shared. It was a crash course in survival—and in how systemic inequities affect patients like her every step of the way.
Lisa’s story isn’t unique. Nearly 50% of dialysis patients in the U.S. are African American or Hispanic, even though these groups make up a much smaller portion of the population. The numbers paint a clear picture: kidney disease isn’t just a health crisis; it’s a justice issue.
And now, looming policy changes threaten to make things even harder for kidney patients. Here’s what you need to know—and how you can help protect those most vulnerable.
“Imagine you’re driving a car, but someone decides to replace your premium fuel with regular,” said Dr. Gary Puckrein, President of the National Minority Equality Forum. “You might still get to your destination, but the long-term damage is inevitable.” This striking analogy illustrates the challenges facing kidney care, where cost-cutting policies could jeopardize the quality of treatment patients receive.
That’s what patients could face if Medicare adopts a new “bundling” policy for dialysis treatments. Currently, critical medications like phosphorus lowering therapies—used to manage kidney disease—are provided separately. But if these drugs are bundled into one flat payment, dialysis facilities might cut corners, choosing cheaper options or forgoing these medications altogether. This has happened before with calcium-lowering drugs, and the consequences disproportionately hurt Black patients.
For someone like Lisa, who already struggles to navigate her care, these changes could mean the difference between managing her disease and facing life-threatening complications.
Dialysis isn’t just a treatment—it’s a lifestyle adjustment that takes a massive toll. Patients spend hours tied to machines multiple times a week, upending their daily lives. On top of that, there are financial burdens, emotional stress, and systemic barriers to getting the care they need.
Lisa experienced these challenges firsthand. After complications with peritoneal dialysis, she had to return to hemodialysis—a grueling schedule that became even more isolating during the COVID-19 pandemic. “I felt like I was just surviving,” she said. But through education and support groups like the Kidney Connection Group, Lisa found her voice as an advocate. “It’s not just about surviving; it’s about thriving.”
Her journey highlights why patient advocacy is crucial, especially in the face of policies that could make treatment even harder to access.
Enter the Kidney Patient Act, a proposed law designed to protect access to life-saving medications by keeping them out of Medicare’s bundled payment system. Advocates like Dr. Jesse Roach, Senior VP for Government Relations at the National Kidney Foundation, are urging policymakers to prioritize this legislation.
“This isn’t just about numbers on a page. It’s about lives,” Dr. Roach said. Without protections like the Kidney Patient Act, thousands of patients could lose access to the medications they depend on. The consequences would be devastating—especially for minority communities already grappling with systemic inequities in healthcare.
Advocacy doesn’t have to start in Washington, D.C.—it can start with you. Here are three simple ways to make an impact:
The fight against kidney disease is about more than healthcare—it’s about fairness. As Dr. Puckrein put it, “Patients shouldn’t be stuck in the backseat, unaware of the decisions being made about their care.” Advocacy is about putting patients back in the driver’s seat, ensuring they have the tools and resources to live not just longer but better lives.
Lisa’s transformation from overwhelmed patient to empowered advocate shows what’s possible when patients are given a voice. Now, it’s up to all of us to ensure that voice is heard. Supporting the Kidney Patient Act is just the first step in building a healthcare system that truly works for everyone.
Kidney disease doesn’t have to be a death sentence. With your help, we can protect access to care, push for equitable policies, and give every patient the chance to thrive. Be part of the change today.
Kidney Patients need your help…
Whether you’re a patient, a caregiver, or simply someone who cares, your voice matters. Contact your representatives, share this message, and help raise awareness about the Kidney Act. Together, we can push for fairer policies, improve access to care, and bring justice to those disproportionately impacted by kidney disease. Every effort makes a difference—be part of the change. Write to your representative today and urge them to support the Kidney PATIENT Act.
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