AJR 28, as amended, Brown. Sickle Cell Anemia Awareness Month.
This measure would recognize the month of September 2013, and each September thereafter, as Sickle Cell Anemia Awareness Month in California, and would urge the Congress of the United States to support the President’s continuation of funding for sickle cell anemia centers and research and to make sickle cell anemia and other genetic hemoglobin disorders a public health priority.
Fiscal committee: no.
P2 1WHEREAS, Sickle cell anemia and sickle cell disease, used
2interchangeably, refer to a group of inherited disorders that affect
3the red blood cells; and
4WHEREAS, Sickle cell anemia is a disease in which a person’s
5body produces abnormally shaped red blood cells that resemble a
6crescent or sickle, and which do not last as long as normal round
7red blood cells, which leads to anemia. The sickle cells also get
8stuck in blood vessels and block blood flow, which can cause pain
9and organ damage; and
10WHEREAS, Sickle cell anemia is a genetic disorder where
11individuals with the disease are born with two sickle cell genes,
12each inherited from one parent. An individual with only one sickle
13cell gene has a “sickle cell trait,” which occurs in one out of every
1412 African Americans and in one out of every 100 Latinos in the
15United States; and
16WHEREAS, Unlike most people with sickle cell anemia, most
17people who have a sickle cell trait never know they have it and
18can live their entire lives without any complications from it; and
19WHEREAS, Serious problems associated with a sickle cell trait
20are rare. However, exercise-related sudden death in individuals
21who have a sickle cell trait most commonly occurs in those
22undergoing intense physical exertion, such as military recruits in
23basic training and athletes during conditioning workouts; and
24WHEREAS, Individuals with a sickle cell trait should not be
25excluded from physical activity, including sports, unless
26recommended to by medical personnel. Instead, people should be
27educated about precautions that should be taken, including drinking
28adequate amounts of fluids, pacing training with longer periods
29of rest and recovery, avoiding participation in performance tests
30such as sprints and mile runs, and, most importantly, being familiar
31with the symptoms of overexertion; and
32WHEREAS, It is estimated that more than 90,000 Americans
33have sickle cell anemia. Sickle cell anemia occurs in one out of
34every 500 African American births and in one out of every 36,000
35Latino births; and
36WHEREAS, Sickle cell anemia can be a life-threatening
37condition, and access to comprehensive care can be limited by
38social, economic, cultural, and geographic barriers; and
39WHEREAS, The average cost of hospitalization for sickle cell
40anemia in 2004 was $6,223, for more than 84,000 hospital
P3 1admissions that year. Total hospitalization costs for individuals
2with sickle cell anemia equaled $488,000,000, of which 65 percent
3were covered by Medicaid funds; and
4WHEREAS, Individuals living with sickle cell anemia encounter
5barriers to obtaining quality care and improving their quality of
6life. These barriers include limitations in geographic access to
7comprehensive care, the varied use of effective treatments, the
8high reliance on emergency departments and on public health
9programs, and the limited number of health care providers with
10knowledge and experience to manage and treat sickle cell anemia;
11and
12WHEREAS, The Sickle Cell Anemia Control Act was signed
13into law in 1972 by President Richard Nixon after pledging that
14his administration would “reverse the record of neglect on the
15dreaded disease” by increasing funding for and expanding sickle
16cell anemia-related programs, including the development of
17comprehensive sickle cell anemia centers; and
18WHEREAS, In 1975, the Sickle Cell Disease Association of
19America, Inc. and its member organizations began conducting
20monthlong events in September to call attention to sickle cell
21anemia and the need to address the problem at national and local
22levels, and chose September as National Sickle Cell Awareness
23Month in order for the public to reflect on the children and adults
24whose lives, education, and careers have been affected by this
25disease; and
26WHEREAS, In 2003, the Sickle Cell Treatment Act was signed
27into law; and
28WHEREAS, The effort to officially recognize Sickle Cell
29Anemia Awareness Month succeeded at the federal level in 1983
30when the United States House of Representatives unanimously
31passed, and President Ronald Reagan signed, the first resolution
32introduced by the Congressional Black Caucus that recognized
33September as National Sickle Cell Anemia Awareness Month;
34now, therefore, be it
35Resolved by the Assembly and the Senate of the State of
36California, jointly, That the Legislature recognizes September
372013, and each September thereafter, as Sickle Cell Anemia
38Awareness Month; and be it further
39Resolved, That the Legislature urges the Congress of the United
40States to support the President’s continuation of funding for the
P4 1Sickle Cell Disease Treatment Demonstration Program, the
2Registry and Surveillance System for Hemoglobinopathy Program
3Initiative, and the Public Health Approach Disorders program, and
4to make sickle cell anemia and other genetic hemoglobin disorders
5a public health priority; and be it further
6Resolved, That the Chief Clerk of the Assembly transmit copies
7of this resolution to the President and Vice President of the United
8States, the Speaker of the United States House of Representatives,
9the President pro Tempore of the United States Senate, each
10Senator and Representative from California in the Congress of the
11United States, and to the author for appropriate distribution.
O
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