RARE Daily

Congressional Legislation Introduced to Improve Care for Rare Kidney Disease Patients

December 15, 2023

Rare Daily Staff

Florida Republican Rep. Gus Bilirakis and Alabama Democrat Rep. Terri Sewell introduced legislation aimed at increasing community and healthcare provider awareness and education about rare kidney disease.

The New Era for Preventing End-Stage Kidney Disease Act is intended to make critical improvements to the way patients with rare kidney disease, especially those in underserved communities, access and receive care.

Each year, Medicare spends more than $84 billion providing critical care to patients with chronic kidney disease, including $36 billion on patients with end-stage kidney disease. There has been little innovation in treatment options for kidney disease patients since the 1960s when dialysis and immunosuppressants became commonplace.

Earlier this year, the FDA approved the first-of-its-kind non-immunosuppressive drug therapy for the rare kidney disease IgA Nephropathy. Yet oftentimes, patients struggle to find a nephrologist well-versed in their rare conditions who can provide an accurate diagnosis and expert treatment. These treatment and diagnostic barriers, coupled with the lack of rare kidney disease awareness and education, often cause a delay in diagnosis that can result in a rapid decline in kidney function and, ultimately, kidney failure. For many rare kidney disease patients, their only options are dialysis, transplant, or death.

“Far too many people living with rare kidney disease have trouble finding specialized care providers,” said Sewell. “Increasing awareness and education is crucial to caring for rare kidney disease patients.”


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