Bill Text: CA SCR124 | 2023-2024 | Regular Session | Chaptered
Bill Title: Cystic Fibrosis Awareness Month.
Spectrum: Partisan Bill (Democrat 1-0)
Status: (Passed) 2024-06-20 - Chaptered by Secretary of State. Res. Chapter 116, Statutes of 2024. [SCR124 Detail]
Download: California-2023-SCR124-Chaptered.html
Senate Concurrent Resolution
No. 124
CHAPTER 116
Relative to Cystic Fibrosis Awareness Month.
[
Filed with
Secretary of State
June 20, 2024.
]
LEGISLATIVE COUNSEL'S DIGEST
SCR 124, Laird.
Cystic Fibrosis Awareness Month.
This measure would proclaim the month of May 2024 as Cystic Fibrosis Awareness Month.
Digest Key
Fiscal Committee: NOBill Text
WHEREAS, Cystic fibrosis, a chronic and progressive systemic disease for which there is no known cure, is the most common fatal genetic disease in the United States; and
WHEREAS, Over 40,000 children and adults in the United States have been diagnosed with cystic fibrosis, and more than 1,000 new cases are diagnosed each year, predominantly through newborn screening; and
WHEREAS, Cystic fibrosis impacts individuals of every race and ethnicity, but due to health disparities and newborn screening panels that fail to capture rare cystic fibrosis transmembrane conductance regulator (CFTR) mutations, many individuals with cystic fibrosis are misdiagnosed or diagnosed late; and
WHEREAS, Due to progress in understanding the disease and new therapeutic advances, the average life expectancy for a child diagnosed with cystic fibrosis after 2018 is in the mid-50s; and
WHEREAS, Despite advances in disease understanding and new therapies, the median age of death for those with cystic fibrosis is the mid-30s; and
WHEREAS, The National Institutes of Health estimate that more than 10,000,000 Americans (approximately 1 in 30) are unknowing, symptomless carriers of the cystic fibrosis gene and have high odds of passing the gene to their children; and
WHEREAS, Prompt, aggressive treatment of the symptoms of cystic fibrosis can extend the lives of people who have the disease; and
WHEREAS, Recent advances in cystic fibrosis research have produced promising leads in gene, mRNA, and drug therapies beneficial to people who have the disease; and
WHEREAS, Cystic fibrosis research continues for potential therapies, and a nationwide network of care centers exists to improve the length and quality of life for individuals with cystic fibrosis; however, lives continue to be lost to this disease; and
WHEREAS, The Cystic Fibrosis Research Institute (CFRI) was formed in 1975 with a mission to be a global resource for the cystic fibrosis community while pursuing a cure through research, education, advocacy, and support; and
WHEREAS, The CFRI provides funding for innovative cystic fibrosis research at medical and academic centers nationwide to expand understanding of the disease process and to seek new therapies and ultimately a cure for this challenging multisystemic disease; and
WHEREAS, The CFRI seeks to improve the quality of life for all people with cystic fibrosis in California and the nation, as well as their family members, by providing psychosocial support programs; and
WHEREAS, Education of the public about cystic fibrosis, including the symptoms of the disease and its impact upon people of all races and ethnicities, increases knowledge and understanding of cystic fibrosis and promotes early diagnosis, and the CFRI serves as a vital link in providing vital educational resources; and
WHEREAS, Support for those impacted by cystic fibrosis, a rare disease, begins with the raising of public awareness, and the CFRI works within the diverse cystic fibrosis community on both the state and national level to advocate for continued research, access to quality care, and the development of new therapies to extend and enhance lives; now, therefore, be it
Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature proclaims the month of May 2024 as Cystic Fibrosis Awareness Month; and be it further
Resolved, That the Legislature honors the goals and ideals of Cystic Fibrosis Awareness Month so as to promote public awareness and understanding of cystic fibrosis and the diverse communities it impacts; and be it further
Resolved, That the Legislature encourages early diagnosis and access to quality care for all people with cystic fibrosis to improve the quality of their lives, advocates for increased support for people who have cystic fibrosis and their families, and supports research to find a cure for cystic fibrosis; and be it further
Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.
