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California Senate Bill SCR51

California 2025-2026 Regular Session

California Senate Bill SCR51 Compare Versions

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11 CALIFORNIA LEGISLATURE 20252026 REGULAR SESSION Senate Concurrent Resolution No. 51Introduced by Senator LairdMarch 27, 2025 Relative to Cystic Fibrosis Awareness Month. LEGISLATIVE COUNSEL'S DIGESTSCR 51, as introduced, Laird. Cystic Fibrosis Awareness Month.This measure would proclaim the month of May 2025 as Cystic Fibrosis Awareness Month.Digest Key Fiscal Committee: NO Bill TextWHEREAS, 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; andWHEREAS, Due to progress in understanding the disease and new therapeutic advances, 50 percent of children diagnosed with cystic fibrosis after 2019 will survive to 61 years of age; andWHEREAS, Despite advances in disease understanding and new therapies, the median age of death for those with cystic fibrosis is only 37 years of age; andWHEREAS, The National Institutes of Health estimate that more than 10,000,000 Americans 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 by a group of parents whose children with cystic fibrosis were not expected to survive their teen years; and WHEREAS, The CFRIs mission is 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 2025 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.
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33 CALIFORNIA LEGISLATURE 20252026 REGULAR SESSION Senate Concurrent Resolution No. 51Introduced by Senator LairdMarch 27, 2025 Relative to Cystic Fibrosis Awareness Month. LEGISLATIVE COUNSEL'S DIGESTSCR 51, as introduced, Laird. Cystic Fibrosis Awareness Month.This measure would proclaim the month of May 2025 as Cystic Fibrosis Awareness Month.Digest Key Fiscal Committee: NO
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99 CALIFORNIA LEGISLATURE 20252026 REGULAR SESSION
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1111 Senate Concurrent Resolution
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1313 No. 51
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1515 Introduced by Senator LairdMarch 27, 2025
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1717 Introduced by Senator Laird
1818 March 27, 2025
1919
2020 Relative to Cystic Fibrosis Awareness Month.
2121
2222 LEGISLATIVE COUNSEL'S DIGEST
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2424 ## LEGISLATIVE COUNSEL'S DIGEST
2525
2626 SCR 51, as introduced, Laird. Cystic Fibrosis Awareness Month.
2727
2828 This measure would proclaim the month of May 2025 as Cystic Fibrosis Awareness Month.
2929
3030 This measure would proclaim the month of May 2025 as Cystic Fibrosis Awareness Month.
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3232 ## Digest Key
3333
3434 ## Bill Text
3535
3636 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
3737
3838 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
3939
4040 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
4141
4242 WHEREAS, Due to progress in understanding the disease and new therapeutic advances, 50 percent of children diagnosed with cystic fibrosis after 2019 will survive to 61 years of age; and
4343
4444 WHEREAS, Despite advances in disease understanding and new therapies, the median age of death for those with cystic fibrosis is only 37 years of age; and
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4646 WHEREAS, The National Institutes of Health estimate that more than 10,000,000 Americans are unknowing, symptomless carriers of the cystic fibrosis gene and have high odds of passing the gene to their children; and
4747
4848 WHEREAS, Prompt, aggressive treatment of the symptoms of cystic fibrosis can extend the lives of people who have the disease; and
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5050 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
5151
5252 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
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5454 WHEREAS, The Cystic Fibrosis Research Institute (CFRI) was formed in 1975 by a group of parents whose children with cystic fibrosis were not expected to survive their teen years; and
5555
5656 WHEREAS, The CFRIs mission is to be a global resource for the cystic fibrosis community while pursuing a cure through research, education, advocacy, and support; and
5757
5858 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
5959
6060 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
6161
6262 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
6363
6464 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
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6666 Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature proclaims the month of May 2025 as Cystic Fibrosis Awareness Month; and be it further
6767
6868 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
6969
7070 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
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7272 Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.