ROCKVILLE, Md. (April 15, 2022) — Groundbreaking legislation introduced today and strongly supported by the American Kidney Fund (AKF) will improve diagnosis and increase community and health care provider awareness of rare kidney diseases, shining a much-needed spotlight on these lesser-known diseases. AKF applauds Reps. G.K. Butterfield (D-NC) and Gus Bilirakis (R-FL) for introducing the New Era for Preventing End-Stage Kidney Disease Act (H.R. 7506). LaVarne A. Burton, AKF President and CEO, today issued this statement:
"In collaboration with rare disease organizations, researchers, health care providers and patient advocates, AKF has been leading work to address kidney disease of unknown origin through our. The UCKD Project seeks to improve understanding of how undiagnosed or misdiagnosed causes of kidney disease directly impact patient care and outcomes. Understanding rare kidney disease and other types of diseases that lead to kidney disease is a major focus of the project.
"AKF is grateful to Reps. Butterfield and Bilirakis for calling national attention to the long-neglected issue of rare kidney diseases, and we urge Congress to act swiftly to enact the bipartisan New Era for Preventing End-Stage Kidney Disease Act. This bill would have a positive impact on the millions of Americans who do not have an accurate diagnosis for the cause of their kidney disease, which jeopardizes their health and potentially makes any treatments they receive less effective, up to and including kidney transplantation.
"Kidney disease currently affects 37 million Americans, including nearly 810,000 who are living with kidney failure, which is most often caused by diabetes and/or high blood pressure. About 5% of kidney failure cases are attributed to unknown causes, according to the U.S. Renal Data System, however, a recentfound that providers estimate 15% of their patients have kidney disease with no known cause.
"The New Era for Preventing End-Stage Kidney Disease Act would create the Centers on Rare Kidney Disease Research at the National Institute of Diabetes and Digestive and Kidney Diseases, providing grants to public and private nonprofit entities to pay all or part of the cost of establishing and providing basic operating support for regional centers of excellence for rare kidney diseases. It also aims to improve diagnosis of rare kidney disease, including through genetic and genomic testing, by convening a Department of Health & Human Services study to Congress on the use and efficacy of these tests in identifying rare kidney disease. In addition, it would increase community and health care provider awareness and education.
"This legislation is vital to help ensure that people with rare kidney disease are accurately diagnosed so that there is no delay in treatment that can ideally slow the progression to kidney failure. The bill's focus on people of color — who are disproportionately affected by kidney failure and some types of rare kidney diseases — is also a crucial step in addressing this serious issue.
"AKF looks forward to continuing to work with Reps. Butterfield and Bilirakis to get this crucial legislation enacted."
About the American Kidney Fund
The American Kidney Fund (AKF) fights kidney disease on all fronts as the nation’s leading kidney nonprofit. AKF works on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. With programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF. One of the nation’s top-rated nonprofits, AKF invests 97 cents of every donated dollar in programs, earning the highest 4-Star rating from Charity Navigator for 20 years in a row as well as the Platinum Seal of Transparency from Candid, formerly GuideStar.