There are about 150 rare kidney diseases. and there are no FDA-approved treatments for most of them. Many rare kidney disease patients struggle to receive 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. This delay can result in a rapid decline in kidney function and, ultimately, kidney failure when the only options are dialysis, transplant, or death.
Each day in the United States, on average, 340 people begin dialysis, and 13 people die waiting for a kidney transplant. In 2019, Medicare spent a total of $124 billion on chronic kidney disease (CKD) and ESRD. Additionally, communities of color are disproportionately affected by rare kidney diseases and a lack of adequate treatment options due to existing health disparities — Black Americans are 4-5 times more likely to develop kidney failure than white Americans.
To address rare kidney disease in the United States, we need more research, public awareness, shorter times to diagnosis, access to genetic testing and counseling, additional treatments, and an understanding of why rates of kidney disease are higher in underserved communities. These steps would help assuage the burden of rare kidney disease on individuals and help defray the costs of dialysis and kidney care in the Medicare program.
The New Era for Preventing End-Stage Kidney Disease Act of 2023 will be introduced by Congressman Gus Bilirakis and Congresswoman Terri Sewell. The bill aims to improve the understanding and timely and accurate diagnosis of rare kidney diseases. Please email your elected officials today to request they become an original cosponsor of this important bill.