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

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

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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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