Illinois HR 326: FSGS AWARENESS DAY

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HR0326LRB104 13381 LAW 25708 r

1HOUSE RESOLUTION

2 WHEREAS, Approximately 1 in 7 American adults have chronic 

3kidney disease, and the third leading cause of chronic kidney 

4disease is glomerulonephritis, often caused by rare kidney 

5diseases such as focal segmental glomerulosclerosis (FSGS); 

6and

7 WHEREAS, FSGS is a condition referring to scarring in the 

8kidneys, often leading to a difficult journey that can, in 

9many cases, result in kidney failure, requiring dialysis, 

10transplants, cycles of remissions and relapse, and even 

11recurrence; and

12 WHEREAS, Of patients with FSGS, 50% of them require 

13dialysis or a kidney transplant within 5 to 10 years of 

14diagnosis; and

15 WHEREAS, FSGS is a severe disease because it often 

16progresses rapidly to kidney failure, and even for patients 

17who receive a kidney transplant, it can recur in their 

18transplanted kidney up to 50% of the time; and

19 WHEREAS, While FSGS can be diagnosed at any age, it is most 

20commonly diagnosed in adults rather than in children and most 

21prevalent in adults over 45 years of age; and

HR0326- 2 -LRB104 13381 LAW 25708 r

1 WHEREAS, FSGS is a burden on our healthcare system, with a 

22019 study estimating that the disease costs Medicaid, 

3Medicare, and private health insurance approximately $2 

4billion annually in direct medical costs, not including 

5indirect and quality of life costs; and

6 WHEREAS, According to data from the National Registry of 

7Rare Kidney Diseases (RaDaR), rare kidney diseases like FSGS 

8comprise only 5% to 10% of chronic kidney disease patients but 

9account for approximately 30% of kidney failure; and

10 WHEREAS, Many patients face delays in being diagnosed with 

11FSGS, due both