Amended in Assembly August 18, 2014

California Legislature—2013–14 Regular Session

Assembly Joint Resolution No. 51

Introduced by Assembly Member Brown

(Principal coauthor: Assembly Member Bradford)

August 7, 2014

Assembly Joint Resolution No. 51—Relative to Sickle Cell Anemia Awareness Month.

LEGISLATIVE COUNSEL’S DIGEST

AJR 51, as amended, Brown. Sickle Cell Anemia Awareness Month.

This measure would recognize the month of September 2014, begin delete and each September thereafter, end delete 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 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, 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, According to the United States Department of
Health and Human Services Office of Minority Health,
approximately two million Americans carry the sickle cell trait
and unlike most people with sickle cell anemia, most people who
have 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 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 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, According to the United States Centers for Disease
Control and Prevention, 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 care 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 of 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, Sickle cell disease is a chronic condition that can
affect any organ, including the kidneys, lungs, and spleen. Research
indicates that patients experience many severe complications,
including stroke, infections, and pulmonary embolism; and

WHEREAS, Pain is the most common complication of sickle
cell disease and the primary reason that people with the disease
go to the emergency room or hospital; and

WHEREAS, While there is no widely available cure for sickle
cell disease, emerging treatments, including medications that
prevent blood cells from sickling, are being studied; and

WHEREAS, A potentially groundbreaking investigational drug,
GMI 1070, designed to treat painful vaso-occlusive crises, which
occur when red blood cells lump together and impede blood flow
in sickle cell patients, has been found to be safe following a clinical
trial at the University of California, Davis; 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
2014, begin delete and each September thereafter, end delete 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 Majority Leader 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.