BILL NUMBER: AJR 28	ENROLLED
	BILL TEXT

	ADOPTED IN SENATE  SEPTEMBER 3, 2013
	ADOPTED IN ASSEMBLY  AUGUST 19, 2013
	AMENDED IN ASSEMBLY  AUGUST 19, 2013

INTRODUCED BY   Assembly Member Brown
   (Coauthors: Assembly Members Bradford, Hall, Holden, Jones-Sawyer,
Mitchell, Weber, Achadjian, Alejo, Allen, Ammiano, Atkins, Bloom,
Bocanegra, Bonilla, Bonta, Buchanan, Ian Calderon, Campos, Chau,
Chávez, Chesbro, Conway, Cooley, Dahle, Daly, Dickinson, Eggman,
Fong, Fox, Frazier, Beth Gaines, Garcia, Gatto, Gomez, Gonzalez,
Gordon, Gorell, Gray, Grove, Hagman, Harkey, Roger Hernández, Jones,
Levine, Linder, Logue, Lowenthal, Maienschein, Mansoor, Medina,
Morrell, Mullin, Muratsuchi, Nazarian, Nestande, Pan, John A. Pérez,
Quirk, Quirk-Silva, Rendon, Salas, Stone, Ting, Wagner, Waldron,
Wieckowski, Wilk, Williams, and Yamada)
   (Coauthor: Senator Wright)

                        JULY 3, 2013

   Relative to Sickle Cell Anemia Awareness Month.


	LEGISLATIVE COUNSEL'S DIGEST


   AJR 28, 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.



   WHEREAS, Sickle cell anemia and sickle cell disease, used
interchangeably, refer to a group of inherited disorders that affect
the red blood cells; and
   WHEREAS, Sickle cell anemia is a disease in which a person's body
produces abnormally shaped red blood cells that resemble a crescent
or sickle, and which 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, which can cause pain and organ
damage; and
   WHEREAS, Sickle cell anemia is a genetic disorder where
individuals with the disease are born with two sickle cell genes,
each inherited from one parent. An individual with only one sickle
cell gene has a "sickle cell trait," which occurs in one out of every
12 African Americans and in one out of every 100 Latinos in the
United States; and
   WHEREAS, Unlike most people with sickle cell anemia, most people
who have a sickle cell trait never know they have it and can live
their entire lives without any complications from it; and
   WHEREAS, Serious problems associated with a sickle cell trait are
rare. However, exercise-related sudden death in individuals who have
a sickle cell trait most commonly occurs in those undergoing intense
physical exertion, such as military recruits in basic training and
athletes during conditioning workouts; and
   WHEREAS, Individuals with a sickle cell trait should not be
excluded from physical activity, including sports, unless recommended
to by medical personnel. Instead, people should be educated about
precautions that should be taken, including drinking adequate amounts
of fluids, pacing training with longer periods of rest and recovery,
avoiding participation in performance tests such as sprints and mile
runs, and, most importantly, being familiar with the symptoms of
overexertion; and
   WHEREAS, It is estimated that more than 90,000 Americans have
sickle cell anemia. Sickle cell anemia occurs in one out of every 500
African American births and in one out of every 36,000 Latino
births; and
   WHEREAS, Sickle cell anemia can be a life-threatening condition,
and access to comprehensive care can be limited by social, economic,
cultural, and geographic barriers; and
   WHEREAS, The average cost of hospitalization for sickle cell
anemia in 2004 was $6,223, for more than 84,000 hospital admissions
that year. Total hospitalization costs for individuals with sickle
cell anemia equaled $488,000,000, of which 65 percent were covered by
Medicaid funds; and
   WHEREAS, Individuals living with sickle cell anemia encounter
barriers to obtaining quality care and improving their quality of
life. These barriers include limitations in geographic access to
comprehensive care, the varied use of effective treatments, the high
reliance on emergency departments and on public health programs, and
the limited number of health care providers with knowledge and
experience to manage and treat sickle cell anemia; and
   WHEREAS, The Sickle Cell Anemia Control Act was signed into law in
1972 by President Richard Nixon after pledging that his
administration would "reverse the record of neglect on the dreaded
disease" by increasing funding for and expanding sickle cell
anemia-related programs, including the development of comprehensive
sickle cell anemia centers; and
   WHEREAS, In 1975, the Sickle Cell Disease Association of America,
Inc. and its member organizations began conducting monthlong events
in September to call attention to sickle cell anemia and the need to
address the problem at national and local levels, and chose September
as National Sickle Cell Awareness Month in order for the public to
reflect on the children and adults whose lives, education, and
careers have been affected by this disease; and
   WHEREAS, In 2003, the Sickle Cell Treatment Act was signed into
law; and
   WHEREAS, The effort to officially recognize Sickle Cell Anemia
Awareness Month succeeded at the federal level in 1983 when the
United States House of Representatives unanimously passed, and
President Ronald Reagan signed, the first resolution introduced by
the Congressional Black Caucus that recognized September as National
Sickle Cell Anemia Awareness Month; now, therefore, be it
   Resolved by the Assembly and the Senate of the State of
California, jointly, That the Legislature recognizes September 2013,
and each September thereafter, as Sickle Cell Anemia Awareness Month;
and be it further
   Resolved, That the Legislature urges the Congress of the United
States to support the President's continuation of funding for the
Sickle Cell Disease Treatment Demonstration Program, the Registry and
Surveillance System for Hemoglobinopathy Program Initiative, and the
Public Health Approach Disorders program, and to make sickle cell
anemia and other genetic hemoglobin disorders a public health
priority; and be it further
   Resolved, That the Chief Clerk of the Assembly transmit copies of
this resolution to the President and Vice President of the United
States, the Speaker of the United States House of Representatives,
the President pro Tempore of the United States Senate, each Senator
and Representative from California in the Congress of the United
States, and to the author for appropriate distribution.