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ACR-110 Sickle Cell Disease Awareness Month.(2021-2022)

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Assembly Concurrent Resolution
No. 110

Introduced by Assembly Member Akilah Weber

September 03, 2021

Relative to Sickle Cell Disease Awareness Month.


ACR 110, as introduced, Akilah Weber. Sickle Cell Disease Awareness Month.
This measure would recognize September 2021 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.
Fiscal Committee: YES  

WHEREAS, Sickle cell disease refers to a group of inherited disorders that affect red blood cells; and
WHEREAS, 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 and pain and organ damage throughout the body. Sickle cell disease is most common among persons of African descent but can also affect persons of other ethnicities; and
WHEREAS, 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” (SCT); and
WHEREAS, Approximately 3,500 babies are born in California each year with SCT, having inherited a sickle cell gene from one parent. About 55 percent of these babies are African American, 40 percent are Hispanic, and 5 percent are White, Native American, or Asian American. 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
WHEREAS, Approximately 8 to 10 percent of African Americans have the inherited SCT; and
WHEREAS, Sickle cell disease affects approximately 100,000 Americans. Sickle cell disease occurs in approximately 1 out of 16,300 live births among Hispanic Americans; and 1 out of 365 live births among African Americans, which is by far the highest incidence of any ethnic group; and
WHEREAS, There are 7,000 to 13,000 Californians with sickle cell disease. About 75 to 100 babies are born in California each year with sickle cell disease, having inherited the sickle cell gene from both parents. 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; and
WHEREAS, 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; and
WHEREAS, 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; and
WHEREAS, Sickle cell disease is a painful, rare, complex, progressively debilitating, and potentially fatal inherited blood disorder. Treatment for Sickle cell disease has suffered from inattention and inadequate resources in California, causing devastating personal and societal costs; and
WHEREAS, Studies estimate that sickle cell disease pain frequently leads to emergency department visits and hospitalizations at an estimated cost of $2,400,000,000 per year in the United States; and
WHEREAS, 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. 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; and
WHEREAS, Care fragmentation for Californians with sickle cell disease is high. California’s lack of health care infrastructure for sickle cell disease, specifically preventive team-based specialist care for adults, drives poor health outcomes; and
WHEREAS, 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. This lack of information limits a full understanding of sickle cell disease’s impact, including evaluating any systemic improvements that are implemented; and
WHEREAS, Health care providers and the public have limited awareness about sickle cell disease; particularly how sickle cell disease affects Hispanic populations, California’s largest ethnic group. 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; and
WHEREAS, 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; and
WHEREAS, 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 Californian adults with sickle cell disease. 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; and
WHEREAS, 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; and
WHEREAS, 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; and
WHEREAS, 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; and
WHEREAS, 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; and
WHEREAS, 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; and
WHEREAS, 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; and
WHEREAS, 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 outlined long-term goals and strategies to improve health care systems and increase education and awareness about sickle cell disease and SCT in California; and
WHEREAS, There is increasing research and development for new treatments of sickle cell disease underway; and
WHEREAS, 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; and
WHEREAS, 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; and
WHEREAS, 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; and
WHEREAS, 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 it
Resolved by the Assembly of the State of California, the Senate thereof concurring, That the Legislature recognizes September 2021 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 further
Resolved, 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 further
Resolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution.