New York J 924: Memorializing Governor Kathy Hochul to proclaim June 10, 2025, as FSGS Awareness Day in the State of New York

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J00924 Summary:

BILL NOJ00924 

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SAME ASNo Same As

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SPONSORRIVERA

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COSPNSRADDABBO, ASHBY, BAILEY, BASKIN, BORRELLO, BRISPORT, BROUK, BYNOE, CANZONERI-FITZPATRICK, CHAN,
 CLEARE, COMRIE, COONEY, FAHY, FERNANDEZ, GALLIVAN, GIANARIS, GONZALEZ, GOUNARDES, GRIFFO, HARCKHAM,
 HELMING, HINCHEY, HOYLMAN-SIGAL, JACKSON, KAVANAGH, KRUEGER, LANZA, LIU, MARTINEZ, MARTINS,
 MATTERA, MAY, MAYER, MURRAY, MYRIE, OBERACKER, O'MARA, ORTT, PALUMBO, PARKER, PERSAUD, RAMOS,
 RHOADS, ROLISON, RYAN C, RYAN S, SALAZAR, SANDERS, SCARCELLA-SPANTON, SEPULVEDA, SERRANO, SKOUFIS,
 STAVISKY, STEC, STEWART-COUSINS, SUTTON, TEDISCO, WALCZYK, WEBB, WEBER, WEIK

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MLTSPNSR

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Go to top J00924 Actions:

BILL NOJ00924 

&nbsp

05/02/2025REFERRED TO FINANCE

05/06/2025REPORTED TO CALENDAR FOR CONSIDERATION

05/06/2025ADOPTED

Go to topJ00924 Committee&nbspVotes:

Go to topJ00924 Floor&nbspVotes:

There are no Assembly votes for this bill in this legislative session.

Go to topJ00924 Text:

Assembly Resolution No. 738

BY: M. of A. Tapia

 MEMORIALIZING Governor Kathy Hochul to proclaim
 June 10, 2025, as FSGS Awareness Day in the State of
 New York

 WHEREAS, Approximately one in seven American adults have chronic
kidney disease, and a significant driver 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 of the kidneys,
often leading to a difficult journey that can, in many cases, result in
kidney failure, requirement of dialysis, transplant, and often cycles of
remission and relapse; and

 WHEREAS, Approximately 50 percent of patients with FSGS require
dialysis or a kidney transplant within five to 10 years of their
diagnosis; and

 WHEREAS, FSGS is a severe disease because it often rapidly
progresses to kidney failure; even for patients with primary FSGS who
receive a kidney transplant, FSGS can return in a transplanted kidney
approximately 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 most prevalent in adults
over 45 years of age; and

 WHEREAS, FSGS is a burden on our healthcare system; a 2019 study
estimated that this disease costs Medicaid, Medicare, and private health
insurance approximately $2 billion annually; and

 WHEREAS, According to the RaDaR Database, rare kidney diseases like
FSGS make up only five to 10 percent of patients with chronic kidney
disease but account for approximately 30 percent of incidents of kidney
failure; and

 WHEREAS, Many patients face delays in being diagnosed with FSGS, due
to the difficulty of the rare disease diagnostic odyssey, averaging five
to seven years, and challenges in accessing nephrological care that
specializes in rare kidney diseases of which there is currently a
shortage 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 with White Americans; Black Americans are also slower
to receive access to kidney transplants; and

 WHEREAS, African Americans may be impacted more because of certain
variants of the APOL1 gene that 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,
contributing to the disproportionate burden of kidney disease in Black
communities; and

 WHEREAS, FSGS is a significant burden to the health and lives of
patients and their families and a costly one, creating great challenges
for the healthcare system and healthcare financing of New York State
although it is currently a treatable condition; and

 WHEREAS, There is new hope for patients with FSGS through numerous
clinical trials for products that may delay progression of FSGS and the
onset of kidney disease, significant progress being made to validate
proteinuria as an indicator of improvement in patients, and a
potentially first FDA-approved treatment which is set to be submitted
for review later this year; and

 WHEREAS, Patients, families, advocacy organizations, healthcare
providers, industry, and researchers are working tireless