SCR 87: Focal segmental glomerulosclerosis.
- Session Year: 2025-2026
- House: Senate
- Latest Version Date: 2025-07-10
Current Status:
Passed
(2025-07-10: Chaptered by Secretary of State. Res. Chapter 139, Statutes of 2025.)
Introduced
In Committee
Awaiting First Chamber Vote
Passed First Chamber
In Committee
Awaiting Second Chamber Vote
Passed Second Chamber
Enacted
This measure would designate June 10, 2025, as Focal Segmental Glomerulosclerosis Awareness Day.
This measure would designate June 10, 2025, as Focal Segmental Glomerulosclerosis Awareness Day.
This measure would designate June 10, 2025, as Focal Segmental Glomerulosclerosis Awareness Day.
WHEREAS, Approximately one in seven 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 the scarring in the kidneys, often leading to a difficult condition that can, in many cases, result in kidney failure, requiring dialysis, transplant, and often cycles of remissions and relapse; and
WHEREAS, Fifty percent of patients with FSGS require dialysis or a kidney transplant within 5 to 10 years of their diagnosis; and
WHEREAS, FSGS is a severe disease because it often progresses rapidly to kidney failure, and even for patients with primary FSGS who receive a kidney transplant, FSGS can recur in their transplanted kidney up to 50 percent of the time; and
WHEREAS, FSGS can be diagnosed at any age, but is most commonly diagnosed in adults rather than in children and is most prevalent in adults over 45 years old; and
WHEREAS, According to the National Registry of Rare Kidney Diseases (RaDaR) database in the United Kingdom, rare kidney diseases like FSGS make up just 5 to 10 percent of chronic kidney disease patients, but account for approximately 30 percent of kidney failure; and
WHEREAS, Many patients face delays in being diagnosed with FSGS due both to the difficulty of obtaining a proper diagnosis of a rare disease, which averages five to seven years, and challenges in accessing nephrology care that specializes in rare kidney diseases, as there is currently a shortage of practitioners in the United States; and
WHEREAS, FSGS disproportionately impacts minority populations, including African Americans, often occurring at a rate four to five times higher than white Americans; and
WHEREAS, Because certain variants of the APOL1 gene significantly increase the risk of developing FSGS and other kidney diseases and these high-risk variants are found almost exclusively in individuals of African ancestry, FSGS contributes to the disproportionate burden of kidney disease in Black communities; and
WHEREAS, FSGS is a significant burden, not just to the health and lives of patients and their families, but also because it incurs great challenges and costs for Californias health care system. A 2019 study estimated that FSGS costs Medicaid, Medicare, and private health insurance about $2 billion annually in direct medical costs, not including indirect and quality of life costs; and
WHEREAS, There is new hope for patients with FSGS, with clinical trials underway for products that may delay progression of FSGS and the onset of kidney disease, including the potential for FDA-approved therapies in the near future. Significant progress is being made by scientists, regulators, patient groups, and industry to validate proteinuria as an indicator of improvement in patients; and
WHEREAS, Patients, families, advocacy organizations like NephCure, health care providers, industry, and researchers are working tirelessly to raise awareness, promote early detection, and develop new innovative therapies for FSGS and other rare kidney diseases for patients living in California; 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 disease; therefore, be it
Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Senate designates June 10, 2025, as Focal Segmental Glomerulosclerosis Awareness Day; and be it further
Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.
WHEREAS, Approximately one in seven 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 the scarring in the kidneys, often leading to a difficult condition that can, in many cases, result in kidney failure, requiring dialysis, transplant, and often cycles of remissions and relapse; and
WHEREAS, Fifty percent of patients with FSGS require dialysis or a kidney transplant within 5 to 10 years of their diagnosis; and
WHEREAS, FSGS is a severe disease because it often progresses rapidly to kidney failure, and even for patients with primary FSGS who receive a kidney transplant, FSGS can recur in their transplanted kidney up to 50 percent of the time; and
WHEREAS, FSGS can be diagnosed at any age, but is most commonly diagnosed in adults rather than in children and is most prevalent in adults over 45 years old; and
WHEREAS, According to the National Registry of Rare Kidney Diseases (RaDaR) database in the United Kingdom, rare kidney diseases like FSGS make up just 5 to 10 percent of chronic kidney disease patients, but account for approximately 30 percent of kidney failure; and
WHEREAS, Many patients face delays in being diagnosed with FSGS due both to the difficulty of obtaining a proper diagnosis of a rare disease, which averages five to seven years, and challenges in accessing nephrology care that specializes in rare kidney diseases, as there is currently a shortage of practitioners in the United States; and
WHEREAS, FSGS disproportionately impacts minority populations, including African Americans, often occurring at a rate four to five times higher than white Americans; and
WHEREAS, Because certain variants of the APOL1 gene significantly increase the risk of developing FSGS and other kidney diseases and these high-risk variants are found almost exclusively in individuals of African ancestry, FSGS contributes to the disproportionate burden of kidney disease in Black communities; and
WHEREAS, FSGS is a significant burden, not just to the health and lives of patients and their families, but also because it incurs great challenges and costs for Californias health care system. A 2019 study estimated that FSGS costs Medicaid, Medicare, and private health insurance about $2 billion annually in direct medical costs, not including indirect and quality of life costs; and
WHEREAS, There is new hope for patients with FSGS, with clinical trials underway for products that may delay progression of FSGS and the onset of kidney disease, including the potential for FDA-approved therapies in the near future. Significant progress is being made by scientists, regulators, patient groups, and industry to validate proteinuria as an indicator of improvement in patients; and
WHEREAS, Patients, families, advocacy organizations like NephCure, health care providers, industry, and researchers are working tirelessly to raise awareness, promote early detection, and develop new innovative therapies for FSGS and other rare kidney diseases for patients living in California; 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 disease; therefore, be it
Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Senate designates June 10, 2025, as Focal Segmental Glomerulosclerosis Awareness Day; and be it further
Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.
WHEREAS, Approximately one in seven 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 the scarring in the kidneys, often leading to a difficult condition that can, in many cases, result in kidney failure, requiring dialysis, transplant, and often cycles of remissions and relapse; and
WHEREAS, Fifty percent of patients with FSGS require dialysis or a kidney transplant within 5 to 10 years of their diagnosis; and
WHEREAS, FSGS is a severe disease because it often progresses rapidly to kidney failure, and even for patients with primary FSGS who receive a kidney transplant, FSGS can recur in their transplanted kidney up to 50 percent of the time; and
WHEREAS, FSGS can be diagnosed at any age, but is most commonly diagnosed in adults rather than in children and is most prevalent in adults over 45 years old; and
WHEREAS, According to the National Registry of Rare Kidney Diseases (RaDaR) database in the United Kingdom, rare kidney diseases like FSGS make up just 5 to 10 percent of chronic kidney disease patients, but account for approximately 30 percent of kidney failure; and
WHEREAS, Many patients face delays in being diagnosed with FSGS due both to the difficulty of obtaining a proper diagnosis of a rare disease, which averages five to seven years, and challenges in accessing nephrology care that specializes in rare kidney diseases, as there is currently a shortage of practitioners in the United States; and
WHEREAS, FSGS disproportionately impacts minority populations, including African Americans, often occurring at a rate four to five times higher than white Americans; and
WHEREAS, Because certain variants of the APOL1 gene significantly increase the risk of developing FSGS and other kidney diseases and these high-risk variants are found almost exclusively in individuals of African ancestry, FSGS contributes to the disproportionate burden of kidney disease in Black communities; and
WHEREAS, FSGS is a significant burden, not just to the health and lives of patients and their families, but also because it incurs great challenges and costs for Californias health care system. A 2019 study estimated that FSGS costs Medicaid, Medicare, and private health insurance about $2 billion annually in direct medical costs, not including indirect and quality of life costs; and
WHEREAS, There is new hope for patients with FSGS, with clinical trials underway for products that may delay progression of FSGS and the onset of kidney disease, including the potential for FDA-approved therapies in the near future. Significant progress is being made by scientists, regulators, patient groups, and industry to validate proteinuria as an indicator of improvement in patients; and
WHEREAS, Patients, families, advocacy organizations like NephCure, health care providers, industry, and researchers are working tirelessly to raise awareness, promote early detection, and develop new innovative therapies for FSGS and other rare kidney diseases for patients living in California; 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 disease; therefore, be it
Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Senate designates June 10, 2025, as Focal Segmental Glomerulosclerosis Awareness Day; and be it further
Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.
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Date
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Status
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|---|---|
| Jul 10, 2025 | Chaptered by Secretary of State. Res. Chapter 139, Statutes of 2025. |
| Jul 10, 2025 | Enrolled and filed with the Secretary of State at 2 p.m. |
| Jul 3, 2025 | In Senate. Ordered to engrossing and enrolling. |
| Jul 3, 2025 | Read. Adopted. (Ayes 74. Noes 0. Page 2428.) Ordered to the Senate. |
| Jun 30, 2025 | From committee: Be adopted. Ordered to consent calendar. (Ayes 10. Noes 0.) (June 30). |
| Jun 23, 2025 | Referred to Com. on RLS. |
| Jun 9, 2025 | In Assembly. Held at Desk. |
| Jun 9, 2025 | Read. Adopted. (Ayes 34. Noes 0. Page 1538.) Ordered to the Assembly. |
| Jun 4, 2025 | From committee: Ordered to third reading. |
| May 28, 2025 | Introduced. Referred to Com. on RLS. |
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Date
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Description
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Location
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Votes
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|---|---|---|---|---|
| Jul 3, 2025 | SCR 87 Weber Pierson Consent Calendar Second Day Regular Session | Assembly Floor |
Passed |
|
| Jun 30, 2025 | Be adopted. To Consent Calendar. | Assembly Standing Committee on Rules |
Passed |
This list shows positions taken on this bill by organizations on the date displayed, which is linked to the original source.
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Date of Hearing: June 30, 2025
ASSEMBLY COMMITTEE ON
, Chair
SBPCA Bill Id:
Author:() – As Ver:May 28, 2025
SENATE VOTE:
SUBJECT:
SUMMARY: Designates June 10, 2025, as Focal Segmental Glomerulosclerosis Awareness Day. Specifically, this resolution makes the following legislative findings:
- Approximately one in seven 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).
- FSGS is a condition referring to the scarring in the kidneys, often leading to a difficult condition that can, in many cases, result in kidney failure, requiring dialysis, transplant, and often cycles of remissions and relapse.
- FSGS is a severe disease because it often progresses rapidly to kidney failure, and even for patients with primary FSGS who receive a kidney transplant, FSGS can recur in their transplanted kidney up to 50 percent of the time.
- Many patients face delays in being diagnosed with FSGS due both to the difficulty of obtaining a proper diagnosis of a rare disease, which averages five to seven years, and challenges in accessing nephrology care that specializes in rare kidney diseases, as there is currently a shortage of practitioners in the United States.
- There is new hope for patients with FSGS, with clinical trials underway for products that may delay progression of FSGS and the onset of kidney disease, including the potential for FDA-approved therapies in the near future.
- 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.
FISCAL EFFECT: This resolution is keyed non-fiscal by Legislative Counsel.
REGISTERED SUPPORT / OPPOSITION:
Support
None on file
Opposition
None on file
Analysis Prepared by:
SENATE RULES COMMITTEE Office of Senate Floor Analyses (916) 651-1520 Fax: (916) 327-4478 | SCR 87 |
THIRD READING
Bill No: SCR 87
Author: Weber Pierson (D), et al.
Introduced: 5/28/25
Vote: 21
SUBJECT: Focal segmental glomerulosclerosis
SOURCE: Author
DIGEST:
This resolution designates June 10, 2025, as Focal Segmental Glomerulosclerosis Awareness Day.
ANALYSIS: This resolution makes the following legislative findings:
- Approximately one in seven 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).
- FSGS is a condition referring to the scarring in the kidneys, often leading to a difficult condition that can, in many cases, result in kidney failure, requiring dialysis, transplant, and often cycles of remissions and relapse.
- FSGS is a severe disease because it often progresses rapidly to kidney failure, and even for patients with primary FSGS who receive a kidney transplant, FSGS can recur in their transplanted kidney up to 50% of the time.
- FSGS is a significant burden, not just to the health and lives of patients and their families, but also because it incurs great challenges and costs for California’s health care system. A 2019 study estimated that FSGS costs Medicaid, Medicare, and private health insurance about $2 billion annually in direct medical costs, not including indirect and quality of life costs.
- 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 disease.
This resolution designates June 10, 2025, as Focal Segmental Glomerulosclerosis Awareness Day.
FISCAL EFFECT: Appropriation: No Fiscal Com.: No Local: No
SUPPORT: (Verified 6/3/25)
None received
OPPOSITION: (Verified 6/3/25)
None received
Prepared by: Hunter Flynn / SFA / (916) 651-1520
6/4/25 20:37:14
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Bill Author
Bill Co-Author(s):
