HR 59
Page 1
Date of Hearing: August 15, 2024
ASSEMBLY COMMITTEE ON RULES
Blanca Pacheco, Chair
HR 59 (McKinnor) – As Amended August 5, 2024
SUBJECT: Sickle Cell Disease Awareness Month.
SUMMARY: Recognizes September 2024 as Sickle Cell Disease Awareness Month, and
encourages Californians to join together in raising awareness and heightening public knowledge
of this disease. Specifically, this resolution makes the following legislative findings:
1) Sickle cell disease is a severe, life-shortening inherited disease that affects the red blood cells
and impacts predominantly people of color, especially African Americans.
2) Although the federal Centers for Disease Control and Prevention estimates that sickle cell
disease affects more than 100,000 people in the United States, the exact number of people
with sickle cell disease is unknown. Comprehensive and coordinated data collection efforts
are needed to better understand and quantify the scope and impact of sickle cell disease on
patients, communities, states, and the nation.
3) Sickle cell disease is a disease in which a person’s body produces abnormally shaped red
blood cells that resemble a crescent or sickle, and that do not last as long as normal round red
blood cells, which leads to anemia. The sickle cells also get stuck in blood vessels and block
blood flow, resulting in vaso-occlusive crises, which can cause pain and organ damage.
4) In the more than 100 years since the underlying cause of sickle cell disease was discovered,
the sickle cell patient community has received relatively little attention and few resources.
For decades, these individuals have suffered due to racial discrimination in the health care
system in addition to life-threatening disease burden.
5) Individuals living with sickle cell disease and their caregivers often report having to wait in
emergency rooms for hours while experiencing severe pain crises, and receiving substandard
care prior to discharge. Many facilities do not have adequate clinical pathways and treatment
protocols based on evidence-based clinical guidelines pertaining to management of sickle
cell disease patients, particularly those experiencing pain crises.
FISCAL EFFECT: This resolution is keyed non-fiscal by Legislative Counsel.
REGISTERED SUPPORT / OPPOSITION:
Support
None on file
Opposition
None on file
Analysis Prepared by: Michael Erke / RLS. / (916) 319-2800