I 
108TH CONGRESS 
1ST SESSION H. R. 1736
To amend title XIX of the Social Security Act to include primary and 
secondary preventative medical strategies for children and adults with 
Sickle Cell Disease as medical assistance under the Medicaid Program, 
and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
APRIL 10, 2003
Mr. DAVIS of Illinois (for himself, Mr. BURR, Mr. SHIMKUS, and Mr. RUSH) 
introduced the following bill; which was referred to the Committee on En-
ergy and Commerce 
A BILL 
To amend title XIX of the Social Security Act to include 
primary and secondary preventative medical strategies 
for children and adults with Sickle Cell Disease as med-
ical assistance under the Medicaid Program, and for 
other purposes.
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Sickle Cell Treatment 
Act of 2003’’. 
SEC. 2. FINDINGS. 
Congress makes the following findings:
(1) Sickle Cell Disease (in this section referred 
to as ‘‘SCD’’) is an inherited disease of red blood 
cells that is a major health problem in the United 
States. 
(2) Approximately 70,000 Americans have SCD 
and approximately 1,800 American babies are born 
with the disease each year. SCD also is a global 
problem with close to 300,000 babies born annually 
with the disease. 
(3) In the United States, SCD is most common 
in African-Americans and in those of Hispanic, Med-
iterranean, and Middle Eastern ancestry. Among 
newborn American infants, SCD occurs in approxi-
mately 1 in 300 African-Americans, 1 in 36,000 
Hispanics, and 1 in 80,000 Caucasians. 
(4) More than 2,500,000 Americans, mostly Af-
rican-Americans, have the sickle cell trait. These 
Americans are healthy carriers of the sickle cell gene 
who have inherited the normal hemoglobin gene 
from 1 parent and the sickle gene from the other 
parent. A sickle cell trait is not a disease, but when 
both parents have the sickle cell trait, there is a 1 
in 4 chance with each pregnancy that the child will 
be born with SCD.
(5) Children with SCD may exhibit frequent 
pain episodes, entrapment of blood within the spleen, 
severe anemia, acute lung complications, and 
priapism. During episodes of severe pain, spleen en-
largement, or acute lung complications, life threat-
ening complications can develop rapidly. Children 
with SCD are also at risk for septicemia, meningitis, 
and stroke. Children with SCD at highest risk for 
stroke can be identified and, thus, treated early with 
regular blood transfusions for stroke prevention. 
(6) The most feared complication for children 
with SCD is a stroke (either overt or silent) occur-
ring in 30 percent of the children with sickle cell 
anemia prior to their 18th birthday and occurring in 
infants as young as 18 months of age. Students with 
SCD and silent strokes may not have any physical 
signs of such disease or strokes but may have a 
lower educational attainment when compared to chil-
dren with SCD and no strokes. Approximately 60 
percent of students with silent strokes have difficulty 
in school, require special education, or both. 
(7) Many adults with SCD have acute prob-
lems, such as frequent pain episodes and acute lung 
complications that can result in death. Adults with 
SCD can also develop chronic problems, including
pulmonary disease, pulmonary hypertension, degen-
erative changes in the shoulder and hip joints, poor 
vision, and kidney failure. 
(8) The average life span for an adult with 
SCD is the mid-40s. While some patients can re-
main without symptoms for years, many others may 
not survive infancy or early childhood. Causes of 
death include bacterial infection, stroke, and lung, 
kidney, heart, or liver failure. Bacterial infections 
and lung injuries are leading causes of death in chil-
dren and adults with SCD. 
(9) As a complex disorder with multisystem 
manifestations, SCD requires specialized comprehen-
sive and continuous care to achieve the best possible 
outcome. Newborn screening, genetic counseling, and 
education of patients and family members are crit-
ical preventative measures that decrease morbidity 
and mortality, delaying or preventing complications, 
in-patient hospital stays, and increased overall costs 
of care. 
(10) Stroke in the adult SCD population com-
monly results in both mental and physical disabil-
ities for life. 
(11) Currently, one of the most effective treat-
ments to prevent or treat an overt stroke or a silent