2026-06
Emergency Resolution:
IgA Nephropathy Awareness Day
Sponsored by
Rep. Eva-Dina Delgado (IL) and Sen. Cristina Castro (IL)
Reported to the Caucus by the
NHCSL Healthcare Task Force
Sen. Gustavo Rivera (NY), Chair
Unanimously approved by the NHCSL Executive Committee on behalf of the entire Caucus on April 10, 2026
WHEREAS, more than 1 in 7 American adults are estimated to have chronic kidney disease (CKD), yet as many as 9 in 10 American adults with CKD do not know they have it;[1] and,
WHEREAS, while the two most common causes of kidney disease are hypertension and heart disease, the third leading cause of kidney disease is glomerulonephritis, often caused by rare, immune-mediated kidney diseases such as IgA nephropathy (IgAN); and,
WHEREAS, IgAN disproportionately impacts minority populations, with Asian Americans facing the greatest impact, followed by Hispanic Americans;[2] and,
WHEREAS, patients with glomerular diseases frequently advance to more costly and more debilitating later stages of kidney disease, including end-stage renal disease (ESRD), more quickly than patients with CKD in general, with estimates suggesting that rare kidney diseases make up 5–10 percent of CKD patients but account for approximately 25 percent of patients receiving treatment kidney failure;[3] and
WHEREAS, patients often face delays in being diagnosed with IgAN and other immune-mediated kidney diseases, owing to the difficulty of the rare disease diagnostic odyssey, the limited number of nephrology providers, and lack of awareness about the causes of kidney disease; and,
WHEREAS, kidney disease, including IgAN, presents a significant burden not only on the health and lives of patients and their families, but also incurs great challenges for the healthcare system and healthcare costs of states, with estimates suggesting that patients with IgAN-attributed ESRD have health costs exceeding $63,000 a year; and,
WHEREAS, while the federal Medicare program covers the costs of dialysis for many patients with ESRD, 45 percent of ESRD patients are dually eligible, for Medicare and Medicaid,[4] and ESRD is a significant source of disability, with ESRD patients employed at only one-fifth the rate of the general population;[5];[6] and,
WHEREAS, kidney disease patients are entering a new era of hope, including for rare diseases, with multiple drugs now approved by the Food and Drug Administration to slow the progression of CKD and multiple drugs approved to slow the progression of IgAN specifically, including innovative immunology-based therapies, and many more clinical trials are underway for such products; and,
WHEREAS, there is growing recognition that early identification of kidney disease and rare kidney diseases, including through broader screening of patients with low-cost serum creatine blood tests and urine albuminuria creatine ratio tests, can slow the progression of kidney disease and prevent or delay ESRD,[7] including in patients with immune-mediated kidney diseases;[8] and,
WHEREAS, “IgAN Awareness Day” is designated in order to increase awareness among patients, providers, and policymakers of kidney disease and glomerular diseases, and IgAN in particular; to support efforts to improve policies that may increase access to screening, diagnosis, and treatment for kidney disease; and to provide hope and inspiration to patients, caregivers, and advocates working tirelessly to advance awareness and better care for kidney disease;
THEREFORE, BE IT RESOLVED, that the National Hispanic Caucus of State Legislators calls on states to designate May 14, 2026, as IgAN Awareness Day.
IN ITS MEETING OF APRIL 6, 2026, THE NHCSL HEALTHCARE TASK FORCE UNANIMOUSLY RECOMMENDED THIS RESOLUTION TO THE EXECUTIVE COMMITTEE FOR APPROVAL AS AN EMERGENCY RESOLUTION.
AT THE REQUEST OF THE NHCSL HEALTHCARE TASK FORCE, AND IN ACCORDANCE WITH THE IMMEDIATE NEEDS PROCEES OUTLINED IN THE BYLAWS, THE EXECUTIVE COMMITTEE UNANIMOUSLY APPROVED THIS RESOLUTION, ON BEHALF OF THE CAUCUS, ON APRIL 10, 2026, AT ITS MEETING IN NEW YORK, NY.
[1] https://www.cdc.gov/kidney-disease/php/data-research/index.html
[2] John J. Sim, Qiaoling Chen, Nancy Cannizzaro, Simran K. Bhandari, Ancilla W. Fernandes, John Chang, Cibele Pinto, Asher D. Schachter, Mohit Mathur; Incidence of Adult Primary Immunoglobulin A Nephropathy among a Racially/Ethnically Diverse Population in the United States. Am J Nephrol 7 April 2025; 56 (2): 172–177.
[3] Effects of Rare Kidney Diseases on Kidney Failure: A Longitudinal Analysis of the UK National Registry of Rare Kidney Diseases (RaDaR) Cohort (shows that RKD is 5-10 percent of CKD in the U.K. but 25 percent of ESRD patients).
[4] https://www.kidneyfund.org/article/congressional-budget-reconciliation-legislation-and-how-it-could-affect-medicaid
[5] https://pmc.ncbi.nlm.nih.gov/articles/PMC5967428/
[6] https://www.kidneyfund.org/article/congressional-budget-reconciliation-legislation-and-how-it-could-affect-medicaid
[7] https://www.kidneynews.org/view/journals/kidney-news/17/12/article-p13_6.xml
[8] https://journals.lww.com/cjasn/fulltext/2023/11000/a_policy_call_to_address_rare_kidney_disease_in.22.aspx