SR0757 104TH GENERAL ASSEMBLY

SR0757 LRB104 21607 RMO 37068 r

SENATE RESOLUTION

WHEREAS, Approximately 1 in 7 American adults have chronic kidney disease, and the third leading cause of chronic kidney disease is glomerulonephritis, often caused by rare kidney diseases such as focal segmental glomerulosclerosis (FSGS); and

WHEREAS, FSGS is a condition referring to scarring in the kidneys, often leading to a difficult journey that can, in many cases, result in kidney failure, requiring dialysis, transplants, and cycles of remissions and relapse; and

WHEREAS, Of patients with FSGS, 50% of them require dialysis or a kidney transplant within 5 to 10 years of diagnosis; and

WHEREAS, FSGS is a severe disease because it often progresses rapidly to kidney failure, and even for patients who receive a kidney transplant, it can recur in their transplanted kidney up to 50% of the time; and

WHEREAS, While FSGS can be diagnosed at any age, it is most commonly diagnosed in adults rather than in children and most prevalent in adults over 45 years of age; and

WHEREAS, FSGS is a burden on our healthcare system, with a 2019 study estimating that the disease costs Medicaid, Medicare, and private health insurance approximately $2 billion annually in direct medical costs, not including indirect and quality of life costs; and

WHEREAS, According to data from the National Registry of Rare Kidney Diseases (RaDaR), rare kidney diseases such as FSGS comprise only 5% to 10% of chronic kidney disease patients but account for approximately 30% of kidney failure; and

WHEREAS, Many patients face delays in being diagnosed with FSGS, due both to the difficulty of the rare disease diagnostic odyssey, averaging 5 to 7 years, and challenges in accessing nephrology care that specialize in rare kidney diseases due to the current shortage in the United States; and

WHEREAS, FSGS disproportionately impacts minority populations, including African Americans, often occurring at a rate 4 to 5 times higher than white Americans; and

WHEREAS, Due to certain variants of the APOL1 gene that significantly increase the risk of developing FSGS and other kidney diseases and the fact that these high-risk variants are found almost exclusively in individuals of African ancestry, the condition contributes to the disproportionate burden of kidney disease in Black communities; and

WHEREAS, FSGS is a significant burden not only to the health and lives of patients and their families but also because the condition incurs great challenges for the healthcare system and healthcare financing in Illinois; and

WHEREAS, There is new hope for patients with FSGS, as clinical trials are underway for products that may delay progression of the condition and the onset of kidney disease, including the first FDA-approved therapy in April 2026, and significant progress is being made by scientists, regulators, patient groups, and industry through the PARASOL, or Proteinuria and GFR as Clinical Trial Endpoints in FSGS, Project to validate proteinuria as an indicator of improvement in patients; and

WHEREAS, Patients, families, advocacy organizations such as NephCure, healthcare providers, the healthcare industry, and researchers are working tirelessly to raise awareness, promote early detection, and develop new innovative therapies for FSGS patients and those living with other rare kidney diseases in Illinois; and

WHEREAS, FSGS Awareness Day is designated to raise awareness of FSGS, to provide support and inspiration to patients and families struggling with the disease, and to promote the efforts needed for better diagnosis and access to future treatments that can transform the course of the condition; therefore, be it

RESOLVED, BY THE SENATE OF THE ONE HUNDRED FOURTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we declare June 9, 2026 as FSGS Awareness Day in the State of Illinois to bring attention to focal segmental glomerulosclerosis (FSGS) disease.