Comparing SRES 416 → ACR 28 — Sickle Cell Disease Awareness Month.

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[Congressional Bills 119th Congress] [From the U.S.
Bill Text - ACR-28 Sickle Cell Disease Awareness Month.
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416 Agreed to Senate (ATS)] <DOC> 119th CONGRESS 1st Session S.
01/06/20 - Amended Senate 06/25/19 - Amended Assembly 05/07/19 - Amended Assembly 02/14/19 - Introduced ACR-28 Sickle Cell Disease Awareness Month.(2019-2020) Text >> Votes >> History >> Bill Analysis >> Today's Law As Amended >> Compare Versions >> Status >> Comments To Author >> Add To My Favorites >> SHARE THIS:
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ACR28:v96#DOCUMENTBill Start Amended  IN  Senate  January 06, 2020 Amended  IN  Assembly  June 25, 2019 Amended  IN  Assembly  May 07, 2019 CALIFORNIA LEGISLATURE— 2019–2020 REGULAR SESSION Assembly Concurrent Resolution No.
416 Expressing support for the designation of September 2025 as ``Sickle Cell Disease Awareness Month'' in order to educate communities across the United States about sickle cell disease and the need for research, early detection methods, effective treatments, and preventative care programs with respect to complications from sickle cell disease and conditions related to sickle cell disease.
28Introduced by Assembly Member Gipson(Coauthors:
_______________________________________________________________________ IN THE SENATE OF THE UNITED STATES September 19 (legislative day, September 16), 2025 Mr.
Assembly Members Burke, Jones-Sawyer, Kamlager-Dove, Kamlager, McCarty, Weber, Aguiar-Curry, Arambula, Bauer-Kahan, Berman, Bigelow, Bloom, Boerner Horvath, Bonta, Brough, Calderon, Carrillo, Cervantes, Chau, Chen, Chiu, Choi, Chu, Cooley, Cooper, Daly, Diep, Eggman, Flora, Fong, Frazier, Friedman, Gabriel, Gallagher, Cristina Garcia, Eduardo Garcia, Gloria, Gonzalez, Gray, Grayson, Holden, Irwin, Kalra, Kiley, Lackey, Levine, Limón, Low, Maienschein, Mathis, Mayes, Medina, Melendez, Mullin, Muratsuchi, Nazarian, Obernolte, O’Donnell, Patterson, Petrie-Norris, Quirk, Quirk-Silva, Ramos, Rendon, Reyes, Luz Rivas, Robert Rivas, Rodriguez, Blanca Rubio, Salas, Santiago, Smith, Mark Stone, Ting, Voepel, Waldron, Wicks, and Wood)(Coauthor:
Thune (for Mr.
Senator Bradford)February 14, 2019Relative to sickle cell disease.
Scott of South Carolina (for himself, Mr.
LEGISLATIVE COUNSEL'S DIGESTACR 28, as amended, Gipson.
Booker, Mr.
Sickle Cell Disease Awareness Month.This measure would recognize September 2019 2020 as Sickle Cell Disease Awareness Month and encourage the Legislature to appropriate funds for research, treatment, and monitoring of sickle cell disease, and for related education and outreach.Digest Key Fiscal Committee:
Lankford, Mr.
YES  Bill TextWHEREAS, Sickle cell disease refers to a group of inherited disorders that affect the red blood cells;
Padilla, Mrs.
andWHEREAS, Sickle cell disease is a severe hereditary blood disorder caused by a mutated form of hemoglobin that distorts red blood cells into a crescent shape at low oxygen levels, causing a cascade of effects resulting in the occlusion of blood vessels, causing pain and organ damage throughout the body.
Hyde-Smith, Ms.
Sickle cell disease is most common among persons of African descent but can also affect persons of other ethnicities;
Warren, Ms.
andWHEREAS, For a baby to be born with sickle cell disease, both parents must carry one copy of the mutated hemoglobin gene termed, “sickle cell trait”;
Klobuchar, and Mr.
andWHEREAS, From 2004 to 2008, inclusive, 486 babies were born with sickle cell disease in California, and of those born with the disease, 89 percent were African American;
Warnock)) submitted the following resolution;
andWHEREAS, Approximately 8 to 10 percent of African Americans have the inherited sickle cell trait;
which was considered and agreed to _______________________________________________________________________ RESOLUTION Expressing support for the designation of September 2025 as ``Sickle Cell Disease Awareness Month'' in order to educate communities across the United States about sickle cell disease and the need for research, early detection methods, effective treatments, and preventative care programs with respect to complications from sickle cell disease and conditions related to sickle cell disease.
andWHEREAS, Sickle cell disease occurs in approximately one out of 365 live births among African Americans, which is by far the highest incidence of any ethnic group;
Whereas sickle cell disease (referred to in this preamble as ``SCD'') is an inherited blood disorder that is a major health problem in the United States and worldwide;
andWHEREAS, People with sickle cell disease suffer frequent bouts of agonizing pain requiring opioid analgesics, yet efforts to address the nation’s opioid epidemic are inadvertently restricting the access of sickle cell disease patients to needed pain management;
Whereas SCD can result in multiple medical complications, including anemia, jaundice, gallstones, strokes, restricted blood flow, damaged tissue in the liver, spleen, and kidneys, and death;
andWHEREAS, Sickle cell disease is a painful, rare, complex, progressively debilitating, and potentially fatal inherited blood disorder.
Whereas SCD causes acute and chronic episodes of severe pain;
Sickle cell disease has suffered from inattention and inadequate resources in California, causing devastating personal and societal costs;
Whereas SCD affects an estimated 100,000 individuals in the United States;
andWHEREAS, Studies estimate that sickle cell disease pain crises frequently lead to emergency department visits and hospitalizations at an estimated cost of $2,400,000,000 per year in the United States;
Whereas approximately 2,000 babies are born with SCD each year in the United States, with the disease occurring in approximately 1 in 365 newborn Black or African American infants and 1 in 16,300 newborn Hispanic- American infants, and can be found in individuals of Mediterranean, Middle Eastern, Asian, and Indian origin;
andWHEREAS, Californians with sickle cell disease suffer poor health, die at younger ages and at higher rates, and experience higher numbers of emergency room visits and hospitalizations compared to people with sickle cell disease who live in other states.
Whereas more than 2,000,000 individuals in the United States have the sickle cell trait and 1 in 13 Black or African Americans carries the trait;
The lifespan of Californians with sickle cell disease—about 43 years of age—is shorter than that of the general United States and African American populations and shorter than that of sickle cell disease populations living in other states;
Whereas there is a 1 in 4 chance that a child born to parents who both have the sickle cell trait will have the disease;
andWHEREAS, Care fragmentation for Californians with sickle cell disease is high.
Whereas the life expectancy of an individual with SCD in the United States is often severely limited, with some estimates showing a shortened life expectancy by 20 years;
California’s lack of health care infrastructure for sickle cell disease, specifically preventive team-based specialist care for adults, drives poor health outcomes;
Whereas sickle cell anemia is a common cause of childhood stroke, and in 2019, fewer than half of children with sickle cell anemia who were 2 to 16 years old received the recommended screening for stroke;
andWHEREAS, Resources are also inadequate to track the numbers of Californians with sickle cell disease, the quality, utilization, outcomes, and cost of their health care, and their quality of life.
Whereas, in 2019, only 2 in 5 children with sickle cell anemia who were 2 to 9 years old used recommended medication that can prevent sickle cell anemia complications;
This lack of information limits a full understanding of sickle cell disease’s impact, including evaluating any system improvements that are implemented;
Whereas, in 2020, the National Academies of Science, Engineering, and Medicine developed a comprehensive strategic plan and blueprint for action to address sickle cell disease, which, among other things, cited the need for new innovative therapies and promoting widespread patient access to approved treatments;
andWHEREAS, There are 7,000 to 13,000 Californians with sickle cell disease.
Whereas, in 2023, hematopoietic stem cell transplantation (commonly known as ``HSCT'') was the only cure for SCD, and the Food and Drug Administration has since approved 2 gene therapies that have been demonstrated to cure SCD;
About 75 to 100 babies are born in California each year with sickle cell disease, having inherited the sickle cell gene from both parents.
Whereas more research is needed to find more treatments and cures to help individuals with SCD;
About 85 percent of Californians born with sickle cell disease are African American, 10 percent are Hispanic, and 5 percent are White, Native American, or Asian American;
Whereas the Centers for Medicare & Medicaid Services has introduced an innovative cell and gene therapy access model for interested States and United States territories, where it will support administration and outcomes-based contracts with drug manufacturers for Medicaid beneficiaries to receive these life-saving breakthroughs;
andWHEREAS, Approximately 3,500 babies are born in California each year with sickle cell trait (SCT), having inherited a sickle cell gene from one parent.
and Whereas September 2025 has been designated as ``Sickle Cell Disease Awareness Month'' in order to educate communities across the United States about SCD, including early detection methods, effective treatments, and preventative care programs with respect to complications from SCD and conditions related to SCD:
About 55 percent of these babies are African American, 40 percent are Hispanic, and 5 percent are White, Native American, or Asian American.
Now, therefore, be it Resolved, That the Senate-- (1) supports the goals and ideals of Sickle Cell Disease Awareness Month;
Although SCT is not a disease, and most affected people do not have sickle cell disease symptoms, people with SCT can pass the sickle cell gene to children;
and (2) encourages the people of the United States to hold appropriate programs, events, and activities during Sickle Cell Disease Awareness Month to raise public awareness of the sickle cell trait, preventative care programs, treatments, and other patient services for those suffering from sickle cell disease, complications from sickle cell disease, and conditions related to sickle cell disease.
andWHEREAS, Health care providers and the public have limited awareness about sickle cell disease, particularly that sickle cell disease affects Hispanic populations, California’s largest ethnic group.
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While national figures indicate that 1 in 10 persons with sickle cell disease is Hispanic, that rate may be higher in California given the state’s increasingly large numbers of residents claiming more than one race or ethnicity;
andWHEREAS, Because sickle cell disease is rare, specialty teams are necessary to accurately diagnose, prevent, reduce, and treat sickle cell disease’s multiple-organ complications and acute episodes.
The need for these expert sickle cell disease teams is increasing in California, as over 95 percent of children with sickle cell disease now live into adulthood;
andWHEREAS, There is a shortage of sickle cell disease specialists and integrated comprehensive teams in California that provide the coordinated medical, social, educational, and behavioral health services patients and community clinicians need.
The shortage in sickle cell disease specialists is most acute for adults with sickle cell disease.
There are few hematologists trained and willing to care for California adults with sickle cell disease.
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As a result, the majority of adults with sickle cell disease are forced to obtain care in hospital emergency departments and other nonsickle cell disease specialty settings;
andWHEREAS, In 2008, fewer than 500 of the estimated 3,000 adults with sickle cell disease in California were treated in a comprehensive sickle cell disease center.
Consequently, adults with sickle cell disease suffer from poor quality of life, and hospitals suffer from avoidably high sickle cell disease emergency room visits, hospitalization and readmission rates, and costs.
California’s low outpatient Medi-Cal reimbursement rates, particularly for preventive services, contribute to these shortages;
andWHEREAS, Community health workers and patient navigators strengthen sickle cell disease comprehensive specialty teams.
They expand access to care by bridging cultural, linguistic, and geographic barriers and providing care coordination services, thereby helping to improve health outcomes.
However, there are insufficient numbers of community health workers and patient navigators dedicated to serving Californians with sickle cell disease statewide due to a lack of resources to support sickle cell disease community-based organizations that provide oversight, training, and accountability;
andWHEREAS, A regional approach is recommended for rare disorder health care delivery and monitoring.
Hemophilia, a blood disorder five times more rare than sickle cell disease, has been regionalized for health care delivery and monitoring for over two decades.
Benefits of getting care within the regional network include improvements in mortality, morbidity, and costs, as well as being part of national monitoring systems;
andWHEREAS, The lack of a robust and well resourced sickle cell disease specialty center network limits California’s involvement in scientific advances and patient access to new and potentially better therapies.
Clinical trials to test the safety and effectiveness of new sickle cell disease therapies are best conducted in sickle cell disease specialty centers, where patients are closely monitored by the sickle cell disease expert clinicians who can rapidly and accurately monitor sickle cell disease complications;
andWHEREAS, California’s current managed Medi-Cal design, which is county-based, is not structured to adequately address the ongoing health of individuals with rare complex disorders like sickle cell disease, nor are managed Medi-Cal health plans designed to serve as clinical trial sites for rare disorders.
This reduces access to the many new sickle cell disease therapeutics in development for Californians;
andWHEREAS, Given that the majority of individuals with sickle cell disease are Medi-Cal beneficiaries and that many expensive hospitalizations are avoidable, improving access to comprehensive outpatient sickle cell disease care, particularly for adults, is cost effective for the state;
andWHEREAS, A California Sickle Cell Action Plan was created in 2018, combining input from over 50 sickle cell stakeholders representing patients, community-based organizations, clinicians, researchers, and policy and public health professionals.
This action plan outlines long-term goals and strategies to improve health care systems and increase education and awareness about sickle cell disease and sickle cell trait in California;
andWHEREAS, There is increasing research and development for new treatments of sickle cell disease underway;
andWHEREAS, In 1972, President Richard Nixon signed the National Sickle Cell Anemia Control Act (Public Law 92-294) into law after pledging that his administration would “reverse the record of neglect of the dreaded disease” by increasing funding for and expanding sickle cell disease-related programs, including the development of comprehensive sickle cell disease centers;
andWHEREAS, In 1975, the Sickle Cell Disease Association of America, Inc., and its member organizations began conducting month-long events in September to call attention to sickle cell disease and the need to address the problem at national and local levels, and chose September as National Sickle Cell Awareness Month in order for the public to reflect on the children and adults whose lives, educations, and careers have been affected by this disease;
andWHEREAS, The effort to officially recognize Sickle Cell Anemia Awareness Month succeeded at the federal level in 1983 when the United States House of Representatives unanimously passed, and President Ronald Reagan signed, the first resolution introduced by the Congressional Black Caucus that recognized September as National Sickle Cell Anemia Awareness Month;
andWHEREAS, The Legislature previously recognized the month of September 2016 as Sickle Cell Anemia Awareness Month in California, and the month of September 2018 as Sickle Cell Disease Awareness Month in California;
now, therefore, be itResolved, ThatRESOLVED BY THE ASSEMBLY OF THE STATE OF CALIFORNIA, THE SENATE THEREOF CONCURRING, That the Legislature recognizes September 2019 2020 as Sickle Cell Disease Awareness Month, and that the residents of the State of California are encouraged to join together in raising awareness and heightening public knowledge of this disease;
and be it furtherResolved by the Assembly of the State of California, the Senate thereof concurring, ThatRESOLVED, That the Legislature is encouraged to appropriate funds for outreach, education, research, treatment, and monitoring relating to sickle cell disease, which disproportionately impacts African Americans and Hispanics in California;
and be it furtherResolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution.