BILL NUMBER: AJR 44	AMENDED
	BILL TEXT

	AMENDED IN ASSEMBLY  AUGUST 21, 2012

INTRODUCED BY   Assembly Member Carter
   (Principal coauthors: Assembly Members Bradford, Davis, Hall,
Mitchell, and Swanson)
   (Principal coauthors: Senators Price and Wright)

                        AUGUST 6, 2012

   Relative to Sickle Cell Anemia Awareness Month.


	LEGISLATIVE COUNSEL'S DIGEST


   AJR 44, as amended, Carter. Sickle Cell Anemia Awareness Month
   This measure would recognize the month of September  2013
  2012  , and each September thereafter, as Sickle
Cell Anemia Awareness Month in California, and would urge the
President and the Congress of the United States to restore and
continue funding for sickle cell anemia centers and research to make
sickle cell anemia and other genetic hemoglobin disorders a public
health priority.
   Fiscal committee: no.



   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, It is estimated that more than 70,000 Americans have
sickle cell anemia. Sickle cell anemia occurs in one out of every
 400   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. 
 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   2012,  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 Anemia 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.