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SCR-87 Cystinuria Awareness Day. (2019-2020)

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CALIFORNIA LEGISLATURE— 2019–2020 REGULAR SESSION

Senate Concurrent Resolution
No. 87


Introduced by Senator Dahle
(Coauthors: Assembly Members Choi, Fong, Cristina Garcia, and Mathis)

February 19, 2020


Relative to Cystinuria Awareness Day.


LEGISLATIVE COUNSEL'S DIGEST


SCR 87, as introduced, Dahle. Cystinuria Awareness Day.
This measure would recognize and proclaim June 24, 2020, as Cystinuria Awareness Day to promote awareness of Cystinuria and to show support for California medical research centers that take an active role in the fight against the disease.
Fiscal Committee: NO  

WHEREAS, Cystinuria occurs in individuals when a rare genetic defect prevents the body from regulating amino acid concentrations, 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 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
WHEREAS, Studies have demonstrated that 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 will 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 Cystinuria, which can potentially limit permanent kidney damage and preserve maximal kidney function; and
WHEREAS, One in every 10,000 Americans is believed to be genetically at risk for Cystinuria and there are 42 known cases of Cystinuria in California; and
WHEREAS, Cystinuria has been documented as a leading risk factor for one of the most common forms of kidney stones; and
WHEREAS, Kidney stone experts cited the economic burden in the United States due to lost worker productivity, treatment, and the care of individuals of working age with kidney stones to be $5.3 billion in 2000; and
WHEREAS, Doctors at the University of California, San Francisco, have world-leading expertise on Cystinuria; and
WHEREAS, Well-supported research funding for Cystinuria will lead to improved screening and treatment and improved quality of life, and will expedite the development of a cure; and
WHEREAS, Steps should be taken to promote awareness and research of Cystinuria and to disseminate information on the importance of early diagnosis and management of Cystinuria; now, therefore, be it
Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature recognizes and proclaims June 24, 2020, as Cystinuria Awareness Day to promote awareness of Cystinuria and to show support for California medical research centers that take an active role in the fight against this devastating disease; and be it further
Resolved, That the Legislature calls on the people of California, interest groups, and affected persons to observe Cystinuria Awareness Day; and be it further
Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.