Kidney disease is devastating Black communities—and the crisis is deepening. While over 1 in 7 U.S. adults lives with chronic kidney disease (CKD), Black Americans are three times more likely than white Americans to develop end-stage kidney disease. And most don’t even know they have it until it’s too late.
Advocates say disparities in kidney disease care are not just a medical emergency—it’s a justice issue. However, patients are reporting issues getting the care they need. According to Healthgrades, nearly one in four counties in the U.S. has no nephrologist at all. A growing number of kidney doctors are aging out of the workforce, and not enough new ones are being trained. That leaves many patients, especially in Black and rural communities, with nowhere to turn.
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The shortage of nephrologists is one reason why the National Minority Quality Forum (NMQF) launched the Nephrologists for Equitable Kidney Care (NEKC) through its Center for Strategic Professional Alliances. NEKC is a national coalition of nephrologists, healthcare professionals, and advocates working to eliminate barriers in kidney care and fight for real change.
This past spring at the 2025 NMQF Leadership Summit on Health Disparities, NEKC convened a powerful panel of voices—from leading kidney organizations like the American Kidney Fund to patients and federal policymakers. The message was clear: disparities in kidney care are systemic, but solvable—with the right action.
The stakes are high. “Time is kidney,” said Dr. Gentzon Hall, PhD NEKC Co-Chair..
A new Medicare policy, meant to cut costs, is making things worse. Since January 2025, seven phosphate binders—essential oral drugs that control phosphorus levels in dialysis patients—have been bundled into the flat payment dialysis clinics receive for treatment. What was intended as a cost-saving move has caused confusion, delayed access, and introduced new clinical risks. These medications help control dangerous phosphorus levels in the blood—without them, patients can suffer severe complications or even death.
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Clinicians are raising the alarm. “You can write whatever you want on paper, but until you hear the lived experience of the patient and those providing the care, your policy isn’t complete,” said Dr. Janice Desir, NEKC Co-Chair.
Providers are now caught between doing what’s right for patients and navigating unclear, underfunded reimbursement rules. “We are seeing how the implementation of this modified bundle is breaking down in dialysis centers across the country,” one clinician explained.
For Black patients already facing barriers—whether due to where they live, the color of their skin, or the biases baked into the healthcare system—this policy adds yet another layer of inequity. It can mean the difference between staying healthy at home or being tied to a dialysis machine three times a week, struggling to work, parent, or simply live.
“The implementation of what was intended to be cost-saving is not really sudden,” Desir noted, “but the execution is where the limitation in understanding begins.”
When providers can’t afford to give out medications, and patients are forced to go without, lives are put at risk. “I want to reduce cost, and I want to improve efficiency,” Dr. Hall shared. “But if those are the only things you consider, what are you missing in terms of how people live their lives?”
NEKC is turning advocacy into action. They are calling on policymakers to bring patients into the room, to stop building policies in a vacuum, and to understand that kidney equity must be part of healthcare reform. The coalition is working with the American Association of Kidney Patients and the Center for Patient Research and Education to collect patient and provider stories that shine a light on the human cost of misguided policy. They are urging Congress and CMS to listen—not just to data, but to lived experience.
“In the end, I tell all my patients, I am the guide,” said Dr. Desir. “You are leading this ship. As the leader of your health, your body, your temple—you should be an advocate about what you need to be the best you that you can be.”
Burton put it simply: “Why wait until people are at the worst stage of disease to care for them? It’s more expensive, more painful, and more disruptive. We should be acting sooner.”
If you are a kidney patient, caregiver, or healthcare provider who has experienced challenges accessing phosphate-lowering therapies due to recent Medicare changes, we invite you to share your story. NEKC is partnering with the American Association of Kidney Patients’ (AAKP) Center for Patient Research and Education to collect real-world feedback that can inform future policy discussions and drive meaningful change.
�� Take the survey here: https://bit.ly/PLTSurvey2025
Your voice and lived experiences matter. Together, we can work toward solutions that protect access and put patients first.
To submit a public comment and make your voice heard, visit https://www.regulations.gov/document/CMS-2025-0240-0002
