AJR 28, as introduced, 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.
P1 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
P2 1WHEREAS, Sickle cell anemia is a genetic disorder where
2individuals with the disease are born with two sickle cell genes,
3each inherited from one parent. An individual with only one sickle
4cell gene has a “sickle cell trait,” which occurs in one out of every
512 African Americans and in one out of every 100 Latinos in the
6United States; and
7WHEREAS, Unlike most people with sickle cell anemia, most
8people who have a sickle cell trait never know they have it and
9can live their entire lives without any complications from it; and
10WHEREAS, Serious problems associated with a sickle cell trait
11are rare. However, exercise-related sudden death in individuals
12who have a sickle cell trait most commonly occurs in those
13undergoing intense physical exertion, such as military recruits in
14basic training and athletes during conditioning workouts; and
15WHEREAS, Individuals with a sickle cell trait should not be
16excluded from physical activity, including sports, unless
17recommended to by medical personnel. Instead, people should be
18educated about precautions that should be taken, including drinking
19adequate amounts of fluids, pacing training with longer periods
20of rest and recovery, avoiding participation in performance tests
21such as sprints and mile runs, and, most importantly, being familiar
22with the symptoms of overexertion; and
23WHEREAS, It is estimated that more than 90,000 Americans
24have sickle cell anemia. Sickle cell anemia occurs in one out of
25every 500 African American births and in one out of every 36,000
26Latino births; and
27WHEREAS, Sickle cell anemia can be a life-threatening
28condition, and access to comprehensive care can be limited by
29social, economic, cultural, and geographic barriers; and
30WHEREAS, The average cost of hospitalization for sickle cell
31anemia in 2004 was $6,223, for more than 84,000 hospital
32admissions that year. Total hospitalization costs for individuals
33with sickle cell anemia equaled $488,000,000, of which 65 percent
34were covered by Medicaid funds; and
35WHEREAS, Individuals living with sickle cell anemia encounter
36barriers to obtaining quality care and improving their quality of
37life. These barriers include limitations in geographic access to
38comprehensive care, the varied use of effective treatments, the
39high reliance on emergency departments and on public health
40programs, and the limited number of health care providers with
P3 1knowledge and experience to manage and treat sickle cell anemia;
2and
3WHEREAS, The Sickle Cell Anemia Control Act was signed
4into law in 1972 by President Richard Nixon after pledging that
5his administration would “reverse the record of neglect on the
6dreaded disease” by increasing funding for and expanding sickle
7cell anemia-related programs, including the development of
8comprehensive sickle cell anemia centers; and
9WHEREAS, In 1975, the Sickle Cell Disease Association of
10America, Inc. and its member organizations began conducting
11monthlong events in September to call attention to sickle cell
12anemia and the need to address the problem at national and local
13levels, and chose September as National Sickle Cell Awareness
14Month in order for the public to reflect on the children and adults
15whose lives, education, and careers have been affected by this
16disease; and
17WHEREAS, In 2003, the Sickle Cell Treatment Act was signed
18into law; and
19WHEREAS, The effort to officially recognize Sickle Cell
20Anemia Awareness Month succeeded at the federal level in 1983
21when the United States House of Representatives unanimously
22passed, and President Ronald Reagan signed, the first resolution
23introduced by the Congressional Black Caucus that recognized
24September as National Sickle Cell Anemia Awareness Month;
25now, therefore, be it
26Resolved by the Assembly and the Senate of the State of
27California, jointly, That the Legislature recognizes September
282013, and each September thereafter, as Sickle Cell Anemia
29Awareness Month; and be it further
30Resolved, That the Legislature urges the Congress of the United
31States to support the President’s continuation of funding for the
32Sickle Cell Disease Treatment Demonstration Program, the
33Registry and Surveillance System for Hemoglobinopathy Program
34Initiative, and the Public Health Approach Disorders program, and
35to make sickle cell anemia and other genetic hemoglobin disorders
36a public health priority; and be it further
37Resolved, That the Chief Clerk of the Assembly transmit copies
38of this resolution to the President and Vice President of the United
39States, the Speaker of the United States House of Representatives,
40the President pro Tempore of the United States Senate, each
P4 1Senator and Representative from California in the Congress of the
2United States, and to the author for appropriate distribution.
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