Texas 2025 - 89th Regular

Texas Senate Bill SR515 Latest Draft

Bill / Enrolled Version Filed 05/14/2025

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                            SENATE RESOLUTION NO. 515
 WHEREAS, Focal segmental glomerulosclerosis is a rare
 condition that frequently leads to chronic kidney disease and
 kidney failure; and
 WHEREAS, FSGS causes scarring in the glomeruli, the small
 filters in the kidney that remove waste from the blood; it often
 progresses rapidly to kidney failure, with half of FSGS patients
 requiring dialysis or a kidney transplant within 5 to 10 years of
 diagnosis; and
 WHEREAS, According to the RaDaR Database, patients with
 rare kidney conditions such as FSGS make up just 5 to 10 percent
 of chronic kidney disease patients but account for approximately
 30 percent of kidney failure; and
 WHEREAS, Commonly diagnosed in adulthood and most
 prevalent in individuals over age 45, FSGS occurs in certain
 populations, including those with African ancestry, at much
 higher rates than in the general population; many patients face
 delays in being diagnosed with FSGS, due to the difficulty of
 rare disease diagnosis, which takes an average of five to seven
 years, and the limited availability of specialized care for rare
 kidney diseases; moreover, some FSGS patients experience delays
 in accessing kidney transplants; and
 WHEREAS, FSGS imposes a heavy burden on the U.S. health
 care system; a 2019 study estimated that the disease costs public
 and private health insurers about $2 billion annually; and
 WHEREAS, There is new hope for patients with FSGS, with
 clinical trials underway for products that may delay the
 progression of FSGS and the onset of kidney disease; patients,
 families, health care providers, researchers, and advocacy
 organizations like NephCure and the Texas Kidney Foundation are
 working tirelessly to promote early detection and to develop
 innovative therapies for FSGS and other rare kidney diseases; a
 patient-led and community-based organization, the Texas Kidney
 Foundation conducts comprehensive kidney screenings as well as
 genetic testing specifically focused on identifying rare kidney
 diseases, including more than 300 rare and chronic kidney
 conditions; through these innovative efforts, the foundation plays
 a vital and unique role in advancing early diagnosis, empowering
 patients through education and awareness, and expanding statewide
 access to personalized and proactive treatment options; and
 WHEREAS, FSGS Awareness Day serves as an important means to
 inform the public and the medical community about this deadly
 disease, to provide support and inspiration to FSGS patients and
 their families, and to promote better access to diagnosis and
 treatment; now, therefore, be it
 RESOLVED, That the Senate of the State of Texas, 89th
 Legislature, hereby recognize June 10, 2025, as FSGS Awareness Day.
 Campbell
  ________________________________
  President of the Senate
  I hereby certify that the
  above Resolution was adopted by
  the Senate on May 14, 2025.
  ________________________________
  Secretary of the Senate
  ________________________________
  Member, Texas Senate