Senate Resolution No. 924
BY: Senator RIVERA
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 tirelessly to raise
awareness, promote early detection, and develop new innovative therapies
for FSGS; and
WHEREAS, FSGS Awareness Day is designated to raise awareness of
FSGS, provide support and inspiration to patients and families
struggling with the disease, and promote the efforts needed for better
diagnosis and access to future treatments which can transform the course
of the disease; now, therefore, be it
RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Kathy Hochul to proclaim June 10, 2025, as FSGS
Awareness Day in the State of New York; and be it further
RESOLVED, That copies of this Resolution, suitably engrossed, be
transmitted to The Honorable Kathy Hochul, Governor of the State of New
York, and NephCure.
