119-hres507

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 507 Introduced in House

    (IH) ]

<DOC>

119th CONGRESS
 1st Session
H. RES. 507

 Expressing support for the designation of June 10 as ``FSGS Awareness 
 Day''.

_______________________________________________________________________

 IN THE HOUSE OF REPRESENTATIVES

 June 12, 2025

Mr. Bilirakis submitted the following resolution; which was referred to 
 the Committee on Energy and Commerce

_______________________________________________________________________

 RESOLUTION

 Expressing support for the designation of June 10 as ``FSGS Awareness 
 Day''.

Whereas approximately 1 in 7 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) ;
Whereas focal segmental glomerulosclerosis is a condition referring to the 
 scarring in the kidneys, often leading to a difficult journey that can 
 in many cases result in kidney failure, requiring dialysis, transplant, 
 and often cycles of remissions and relapse;
Whereas 50 percent of patients with FSGS require dialysis or a kidney transplant 
 within 5-10 years of their diagnosis;
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;
Whereas FSGS can recur in their transplanted kidney up to 50 percent of the 
 time;
Whereas FSGS recurrence can happen quickly posttransplant, sometimes hours to 
 days, and increases the recurrence risk in a future graft to 80 to 100 
 percent;
Whereas FSGS is a burden on our health care system, with a 2019 study estimating 
 that FSGS costs Medicaid, Medicare, and private health insurance about 
 $2,000,000,000 annually in direct medical costs, not including indirect 
 and quality of life costs;
Whereas, according to the RaDaR Database, 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;
Whereas many patients face delays in being diagnosed with FSGS, due both to the 
 difficulty of the rare disease diagnostic odyssey, which averages 5 to 7 
 years, and challenges in accessing nephrology care that specializes in 
 rare kidney diseases, of which there is currently a shortage in the 
 United States;
Whereas FSGS disproportionately impacts minority populations, including African 
 Americans, often occurring at a rate 4 to 5 times higher than White 
 Americans;
Whereas, because of certain variants of the APOL1 gene that significantly 
 increase the risk of developing FSGS and other kidney diseases, and 
 because 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;
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, and significant progress being made by scientists, regulators, 
 patient groups, and industry to validate proteinuria as an indicator of 
 improvement in patients;
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;
Whereas millions of dollars have been raised for research on the severe rare 
 kidney disease FSGS at the Tampa Pig Jig, an event started in 2011 when 
 3 friends wanted to raise money for a friend diagnosed with the rare 
 kidney disease FSGS and is now attended by about 10,000 people annually 
 in pursuit of a cure for this devastating disease; 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 to promote the efforts needed for better diagnosis and 
 access to future treatments that can transform the course of the 
 disease: Now, therefore, be it
 Resolved, That the House of Representatives--

    (1) expresses support for the designation of ``FSGS 
 Awareness Day'';

    (2) applauds the efforts of advocates and organizations 
 that encourage awareness, promote research, and provide 
 education, support, and hope to those impacted by FSGS, 
 including those suffering from recurrent FSGS; and

    (3) recognizes the commitment of parents, families, 
 researchers, health professionals, industry, and others 
 dedicated to finding an effective treatment and eventual cure 
 for FSGS.
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