PRINTER'S NO. 1019
THE GENERAL ASSEMBLY OF PENNSYLVANIA
SENATE RESOLUTION
No.
173
Session of
2019
INTRODUCED BY J. WARD, DINNIMAN, FARNESE, FONTANA, BARTOLOTTA,
LANGERHOLC, BREWSTER, MARTIN, BROWNE, PHILLIPS-HILL, KILLION,
SCAVELLO, BLAKE, MENSCH, TARTAGLIONE, HUGHES AND COSTA,
JUNE 18, 2019
INTRODUCED AND ADOPTED, JUNE 18, 2019
A RESOLUTION
Recognizing June 24, 2019, as "Cystinuria Awareness Day" in
Pennsylvania.
WHEREAS, Cystinuria occurs in individuals in which a rare
genetic defect prevents the body from regulating amino acid
concentrations, subsequently leading to elevated levels of
cystine and the formation of cystine stones in the kidney,
ureter and bladder; and
WHEREAS, The American Urological Association recognizes
cystinuria as the most common monogenic kidney stone disorder;
and
WHEREAS, The majority of cystinuria patients start to suffer
from chronic cystine stone formation before 20 years of age; and
WHEREAS, Cystinuria patients often endure episodes of
debilitating pain (typically known as renal colic), nausea,
vomiting and recurrent urinary tract infections; and
WHEREAS, The majority of cystinuria patients will require
numerous stone removal procedures and surgeries; and
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WHEREAS, Studies have demonstrated cystinuria patients have
worse health-related quality of life than the general
population, specifically in areas of general health, bodily pain
and mental health; and
WHEREAS, Cystinuria patients may suffer from life-threatening
complications, such as hypertension, renal insufficiency, end
stage renal disease and the need for a kidney transplant; and
WHEREAS, The majority of cystinuria patients forming
recurrent stones develop some form of chronic kidney disease in
their lifetime; and
WHEREAS, There is no cure for Cystinuria, treatment options
significantly reduce medically necessary surgeries and some
patients can live a stone-free life; and
WHEREAS, Cystinuria can be diagnosed from analysis of a 24-
hour urine test; and
WHEREAS, Detection may be improved by increased education and
screening, as many patients do not receive a diagnosis until
after enduring one or more stone episodes; and
WHEREAS, Early diagnosis is important to the long-term
management of a cystinuria, which can potentially limit
permanent kidney damage and preserve maximal kidney function;
and
WHEREAS, One in every 10,000 Americans are believed to be
genetically at risk for cystinuria and there are 30 known cases
of cystinuria in Pennsylvania; and
WHEREAS, Cystinuria has been documented as a leading risk
factor for one of the top most common forms of kidney stones;
and
WHEREAS, Kidney stone experts cite the economic burden in the
United States for providing care for individuals of working age
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with kidney stones to be $5.3 billion in 2000; and
WHEREAS, Doctors at the University of Pennsylvania have
world-leading expertise on cystinuria; and
WHEREAS, Well-supported research funding for cystinuria will
lead to improved screening and treatment, improved quality of
life and expedite the development of a cure; therefore be it
RESOLVED, That the Senate recognize June 24, 2019, as
"Cystinuria Awareness Day" in Pennsylvania to promote awareness
of cystinuria and to show support for research at the
Pennsylvania medical research centers that take an active role
in the fight against cystinuria.
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