[Congressional Bills 103th Congress]
[From the U.S. Government Publishing Office]
[H.R. 3745 Introduced in House (IH)]
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 Representatives 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 Caucasian individuals.
(4) Sickle Cell Disease is a painful and disabling disorder
which can lead to untimely death and is caused by inadequate
transportation of oxygen 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 Disease 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 individuals 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 African-American university in the
United States.
(13) Approximately 16,700 students attend this 112 year old
school and Southern graduates are located throughout the United
States and the world.
(14) The State of Louisiana through the Louisiana
Legislature and Southern University, has shown great leadership
and committed significant financial and personnel resources
towards the development of a National Center for Sickle Cell
Disease Research.
(15) Because Southern University has committed its
resources and personnel to seeing this project through to its
ultimate goal, finding a cure for Sickle Cell Disease, and
because of Southern University'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 establish 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 behavioral 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 Medical Center to conduct clinical trials on
anti-sickling agents;
(4) to provide expanded opportunities for faculty members
at the institutions described in paragraph (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 Disease; and
(6) to develop, promote and implement joint research
projects with other public and private higher education
institutions including teaching hospitals on Sickle Cell
Disease.
SEC. 2. NATIONAL CENTER FOR SICKLE CELL DISEASE RESEARCH.
(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 construction of the National Center for Sickle Cell
Disease Research at Southern University in Baton Rouge, Louisiana, and
for related facilities and equipment at such Center. Prior to the
awarding of such grant, the State of Louisiana 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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