On April 14, 2022, Reps G.K. Butterfield (D-NC) and Gus Bilirakis (R-FL) introduced H.R. 7506, the New Era for Preventing End-Stage Kidney Disease Act of 2022. This legislation shines a spotlight on rare kidney disease, which often goes undiagnosed, and would help transform the delivery of care to rare kidney disease patients.
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 (NIDDK). These regional centers of excellence would develop resources for clinical research and training in diagnostic, prevention, control, and treatment methods for rare kidney diseases. It would also increase public awareness of rare kidney diseases.
The bill would expand genetic and genomic testing by convening a Department of Health and Human Services (HHS) study on the use and efficacy of these tests in identifying rare kidney disease.
As kidney disease disproportionately affects communities of color, the bill would require the Secretary of HHS to include kidney diseases, including rare kidney diseases, in policies and programs at HHS that are implemented to help eliminate disparities in the United States. The bill would also create paid postgraduate fellowships in nephrology called the "Communities of Color Service Program." The goals of program include increasing providers' knowledge of issues related to prevention, diagnosis and treatment of rare kidney disease among racial and ethnic minority populations, including the prevalence of the APOL1 gene; improving quality of care to communities of color; and increasing the number of culturally competent nephrologists.
Please contact your U.S. Representative to request support for this important bill.