Policy Resolution HHS-25-08

WHEREAS, the National Black Caucus of State Legislators (NBCSL) has long prioritized being a leading voice on the importance of improving sickle cell disease (SCD) care for individuals and families and has adopted resolutions to advance access to transformative care and treatment;

WHEREAS, SCD is a severe, heritable disease in which red blood cells become rigid, and sickle shaped, leading to sickled cells dying early and getting lodged in small blood vessels, restricting blood flow through the body;

WHEREAS, complications from the disease can include anemia, stroke, acute and chronic pain, infections, pneumonia and acute chest syndrome, and kidney, liver, and heart disease;

WHEREAS, according to the Centers for Disease Control and Prevention (CDC), SCD affects more than 100,000 individuals in the United States, meaning millions of Americans have a family member, friend, neighbor, or colleague whose life has been touched by the disease;

WHEREAS, SCD predominantly affects communities of color, occurring in approximately 1 of every 365 Black or African American births and 1 in every 16,300 Hispanic American births according to the CDC;

WHEREAS, approximately 1 in 13 Black babies born in the United States have Sickle Cell Trait, which means they inherited a single copy of the gene that causes SCD, according to the CDC;

WHEREAS, more than 90 percent of people with SCD in the United States are non-Hispanic Black or African American, and an estimated 3 to 9 percent are Hispanic or Latino, according to the CDC;

WHEREAS, SCD severely decreases life expectancy, and individuals with SCD have a life expectancy approximately 20 years shorter than the average of the general population, according to the CDC;

WHEREAS, many individuals with SCD receive sub-optimal care or have not seen a sickle cell specialist, and only 1 in 4 individuals with SCD receives the standard of care described in guidelines for sickle cell care, according to the National Institutes of Health;

WHEREAS, individuals with SCD use health care services at rates significantly higher than their peers, including increased emergency department visits and repeated hospitalizations according to the National Institutes of Health;

WHEREAS, about half of individuals with SCD in the United States are enrolled in Medicaid, who collectively experience disproportionate numbers of emergency department visits, inpatient hospital stays, and outpatient visits, compared to Medicaid beneficiaries without the disease according to the National Institutes of Health;

WHEREAS, the transition period from pediatric to adult care is a particularly challenging point in the care continuum;

WHEREAS, uninterrupted access to care is critical for the ongoing management of the disease in young adults;

WHEREAS, individuals living with SCD who experience a delay of more than six months in transition from pediatric to adult care are twice as likely to be hospitalized compared to those who transition in less than two months according to the American Society of Hematology;

WHEREAS, the American Society of Hematology finds comprehensive health care transition programs for SCD as “essential to prepare, transfer, and integrate emerging adults in the adult care setting;” and

WHEREAS, hospitals, states, community-based organizations, and others have begun to develop health care transition programs to support individuals with SCD in their transition from pediatric to adult care, including by improving self-management skills, engaging patients in the transition process, providing care coordination, and connecting to adult providers.

THEREFORE, BE IT RESOLVED, that the National Black Caucus of State Legislators urges state and federal policymakers to establish and appropriately fund programs that ensure individuals with SCD have access to comprehensive pediatric to adult transition of care programs;

BE IT FURTHER RESOLVED, that state and federal policymakers ensure the transition of care programs and funding are comprehensive by considering public-private partnerships with the leading sickle cell care facilities in the state, creating positions for care coordinators to work alongside families and providers when establishing and implementing a transition plan, instituting strategies for reaching individuals with SCD living in rural areas, and outlining the steps all stakeholders must take to ensure a successful transition of care and the proper time periods for doing so;

BE IT FURTHER RESOLVED, that in developing comprehensive SCD transition of care models that identify and address barriers to care, states engage their rare disease or sickle cell-specific committees, councils, and task forces, as well as solicit input from the SCD Community, community health workers, and primary care, hematology, and emergency department physicians with specific experience in the area of SCD;

BE IT FURTHER RESOLVED, that state and federal policymakers address gaps in the health professional workforce by establishing education requirements and addressing reimbursement for SCD care, in order to ensure that there are an appropriate number of specialized providers that can care for adults with SCD;

BE IT FURTHER RESOLVED, that state and federal policymakers increase data collection efforts related to SCD and the transition of care to further inform the care coordination and comprehensive care programs necessary to support individuals with the disease, identify gaps and opportunities to improve access, and evaluate progress towards an equitable health care system for all individuals with SCD, while protecting patient privacy; and

BE IT FINALLY RESOLVED, that state and federal policymakers take all necessary actions to identify and address barriers youth and their families face when transitioning to adult care, including logistical and financial challenges such as transportation, missing work, and insurance changes.

• Resolution ID: HHS-25-08
• Sponsored by: Rep. John King (SC), Rep. Annie McDaniel (SC), and Rep. Amber Baker (NC)
• Policy Committee: Health and Human Services (HHS)