ROCKVILLE, Md. (Dec. 15, 2023) — The American Kidney Fund (AKF) commends Reps. Gus Bilirakis (R-FL) and Terri Sewell (D-AL) for introducing the New Era of Preventing End-Stage Kidney Disease Act (H.R. 6790), bipartisan legislation that will expand community and health care provider awareness and improve diagnosis of rare kidney diseases. LaVarne A. Burton, AKF President and CEO, issued this statement:
"Kidney disease is the fastest growing non-contagious disease in the United States, with 37 million Americans living with kidney disease and millions more at risk. Identifying the root cause of someone's kidney disease can inform treatment decisions and help improve health outcomes, but studies suggest the cause of kidney failure is unknown for up to 15% of patients.
"This legislation will help shine a light on rare kidney disease by establishing the National Institute of Diabetes and Digestive and Kidney Diseases Centers of Excellence on Rare Kidney Disease Research. Conducting research on the origins, cause, symptoms, identification, progression and treatment of rare kidney diseases and increasing public awareness of these conditions, particularly in rural and underserved communities, is critically important.
"We strongly support this legislation and thank Reps. Bilirakis and Sewell for taking action to help people with rare kidney diseases. The American Kidney Fund has been leading the charge to address kidney disease of unknown origin through our Unknown Causes of Kidney Disease (UCKD) Project and our UCKD Coalition, which will be focusing advocacy efforts on getting broad bipartisan support for this bill and ensuring its passage.
"The legislation will also require the Secretary of Health and Human Services to conduct a study and provide a report to Congress on testing, preventative care, precision medicine and treatment for rare kidney diseases, including testing for APOL1-mediated kidney disease. Researchers in this study will look into factors such as the quality and reliability of kidney biopsy when diagnosing these conditions, use of and barriers to genetic and genomic testing and the social, behavioral and biological factors leading to rare kidney disease."
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.