I
103D CONGRESS
2D SESSION
H. R. 3745
To authorize the Secretary of Health and Human Services to award a grant
for the establishment of the National Center for Sickle Cell Disease
Research, and for other purposes.
IN THE HOUSE OF REPRESENTATIVES
JANUARY 26, 1994
Mr. JEFFERSON (for himself and Mr. FIELDS of Louisiana) introduced the
following bill; which was referred to the Committee on Energy and Commerce
A BILL
To authorize the Secretary of Health and Human Services
to award a grant for the establishment of the National
Center for Sickle Cell Disease Research, 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. FINDINGS AND PURPOSE.
(a) FINDINGS.—Congress finds that:
(1) Sickle Cell Disease is a serious illness that
disproportionately affects African-Americans.
(2) Approximately 1 out of every 12 African-
Americans is born with the sickle cell trait, and
about 1 out of every 600 is afflicted with Sickle Cell
Disease.
(3) Sickle cell conditions also occur in other
United States populations, primarily those of Puerto
Rican, Cuban, southern Italian ancestry and more
recently sickle cell has been found in some Cauca-
sian individuals.
(4) Sickle Cell Disease is a painful and dis-
abling disorder which can lead to untimely death
and is caused by inadequate transportation of oxy-
gen due to an abnormal type of hemoglobin molecule
in the red blood cells.
(5) Sickle Cell Disease is an inherited disease
which can be transmitted to offspring, particularly if
both parents carry the genetic trait.
(6) The sickle cell trait carriers show no sign of
the disease, but statistically, 1 in 4 of their children
will be afflicted with the disease.
(7) There is no national research center devoted
to Sickle Cell Disease in the United States.
(8) There is no known cure for Sickle Cell Dis-
ease at this time and there is a need for prioritized
and specialized research to find such a cure for this
severely disabling disease.
(9) 
Louisiana’s 
minority 
population 
is
1,299,281.
(10) Of this number, a suspected 3,248 individ-
uals will have the disease and of those individuals,
25 percent (812 individuals) will have the most
acute and serious stage of Sickle Cell Disease, a
stage that is usually fatal.
(11) Some 129,928 individuals in Louisiana will
carry the sickle cell trait.
(12) Southern University, located in Baton
Rouge, Louisiana is the largest predominately Afri-
can-American university in the United States.
(13) Approximately 16,700 students attend this
112 year old school and Southern graduates are lo-
cated throughout the United States and the world.
(14) The State of Louisiana through the Lou-
isiana Legislature and Southern University, has
shown great leadership and committed significant fi-
nancial and personnel resources towards the develop-
ment of a National Center for Sickle Cell Disease
Research.
(15) Because Southern University has commit-
ted its resources and personnel to seeing this project
through to its ultimate goal, finding a cure for Sick-
le Cell Disease, and because of Southern Univer-
sity’s large minority population it is appropriate to
locate the National Center for Sickle Cell Disease
Research at Southern University in Baton Rouge.
(b) PURPOSE.—It is the purpose of this Act to estab-
lish a National Center for Sickle Cell Disease at Southern
University in Baton Rouge, Louisiana, that will have the
following objectives—
(1) to conduct biomedical research and clinical
investigations designed to find a cure for Sickle Cell
Disease;
(2) to conduct a wide variety of human behav-
ioral studies designed to provide new knowledge
about such issues as the effectiveness of various
counseling and education methods, and techniques to
improve coping skills on the part of patients and
their families;
(3) to establish collaborative arrangements and
joint research programs and projects with other
Louisiana institutions of higher education, such as
Louisiana State University Medical Centers at New
Orleans and Shreveport and Tulane University Med-
ical Center to conduct clinical trials on anti-sickling
agents;
(4) to provide expanded opportunities for fac-
ulty members at the institutions described in para-
graph (3) to publish in the three broad areas of
basic biomedical research, psychosocial research and
clinical research;
(5) to become a laboratory for training both
graduate and undergraduate students in research
methods and techniques concerning Sickle Cell Dis-
ease; and
(6) to develop, promote and implement joint re-
search projects with other public and private higher
education institutions including teaching hospitals
on Sickle Cell Disease.
SEC. 2. NATIONAL CENTER FOR SICKLE CELL DISEASE RE-
SEARCH.
(a) GRANT.—The Secretary of Health and Human
Services shall award a grant to the Louisiana Department
of Health and Hospitals for the establishment and con-
struction of the National Center for Sickle Cell Disease
Research at Southern University in Baton Rouge, Louisi-
ana, and for related facilities and equipment at such Cen-
ter. Prior to the awarding of such grant, the State of Lou-
isiana shall certify to the Secretary—
(1) that the State of Louisiana has provided
not less than $7,000,000 to support and operate
such Center; and
(2) that the State of Louisiana has developed a
plan to provide funds for the continued operation
and support of such center.
(b) AUTHORIZATION OF APPROPRIATIONS.—There is
authorized to be appropriated $21,000,000 to carry out
the purposes of this Act.
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