Bill Text: DE HCR154 | 2023-2024 | 152nd General Assembly | Draft
Bill Title: Recognizing September 2024 As Sickle Cell Disease Awareness Month In The State Of Delaware.
Spectrum: Moderate Partisan Bill (Democrat 16-3)
Status: (Engrossed - Dead) 2024-06-25 - Passed By Senate. Votes: 20 YES 1 ABSENT [HCR154 Detail]
Download: Delaware-2023-HCR154-Draft.html
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SPONSOR: |
Rep. K. Johnson & Sen. Lockman |
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Reps. Minor-Brown, Baumbach, Griffith, Gray, Morrison, Neal, Parker Selby, Phillips; Sens. Sokola, Townsend, Hansen, Huxtable, Mantzavinos, Lawson, Wilson |
HOUSE OF REPRESENTATIVES
152nd GENERAL ASSEMBLY
HOUSE CONCURRENT RESOLUTION NO. 154
RECOGNIZING SEPTEMBER 2024 AS SICKLE CELL DISEASE AWARENESS MONTH IN THE STATE OF DELAWARE.
WHEREAS, sickle cell disease (“SCD”) is an inherited blood disorder that is a major health concern in the United States and worldwide; and
WHEREAS, SCD causes the deformity and rapid destruction of red blood cells, which results in multiple medical complications, including, anemia, jaundice, gallstones, strokes, restricted blood flow, damaged tissue in the liver, spleen, and kidneys, and death; and
WHEREAS, SCD causes acute and chronic episodes of severe pain which affects an estimated 100,000 individuals in the United States and 8 million worldwide; and
WHEREAS, more than 3,000,000 individuals in the United States have the sickle cell trait and 1 in 13 Black or African-American indviduals carry the trait; and
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; and
WHEREAS, while hematopoietic stem cell transplantation (commonly known as ‘‘HSCT’’) and gene therapy are currently the transformative therapies for SCD and some advances in treating the associated complications of SCD have occurred, more research is needed to find widely available treatments and cures to help individuals with SCD; and
WHEREAS, approximately 600 patients live with SCD in Delaware; and
WHEREAS, over 99% of SCD patients identify as minorities; and
WHEREAS, ChristianaCare directs a comprehensive Adult Sickle Cell Program with approximately 200 patients; and
WHEREAS, two-thirds to three-fourths of ChristianaCare Sickle Cell Program patients are on disease modifying therapy, but face challenges accessing regular care needed to support them; and
WHEREAS, approximately one-third of ChristianaCare Sickle Cell Program patients live in Kent and Sussex County who must travel to New Castle County for care; and
WHEREAS, Nemours Children's Health provides care for 259 SCD patients; and
WHEREAS, over 99 percent of Nemours SCD patients are minorities under the age of 18 years old; and
WHEREAS, approximately two-thirds of Nemours SCD patients are insured by Medicaid or the Children's Health Insurance Program; and
WHEREAS, last year, Delaware submitted an application to be part of the Centers for Disease Control and Prevention Sickle Cell Data Collection (“SCDC”) Program to increase statewide data collection on patients with SCD and use it to inform policy; and
WHEREAS, while unfunded, the state or the program leaders have moved forward with the planning and implementation of SCDC in Delaware alongside government, higher education, health care, community-based organizations, patients, and caregiver stakeholders; and
WHEREAS, September has been nationally recognized as Sickle Cell Disease Awareness Month in order to educate communities across the United States about Sickle Cell Disease, including early detection methods, effective treatments, and preventative care programs with respect to complications from Sickle Cell Disease and conditions related to Sickle Cell Disease.
NOW, THEREFORE:
BE IT RESOLVED by the House of Representatives of the 152nd General Assembly of the State of Delaware, the Senate concurring therein, that September 2024 is hereby recognized as Sickle Cell Disease Awareness Month in the State of Delaware.
SYNOPSIS
This House Concurrent Resolution recognizes September 2024 as Sickle Cell Disease Awareness Month in the State of Delaware.
