II

103D CONGRESS

1ST SESSION S. 1724

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 SENATE OF THE UNITED STATES

NOVEMBER 19 (legislative day, NOVEMBER 2), 1993

Mr. JOHNSTON introduced the following bill; which was read twice and

referred to the Committee on Labor and Human Resources

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.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,

3 SECTION 1. FINDINGS AND PURPOSE.

4 (a) FINDINGS.—Congress finds that:

5 (1) Sickle Cell Disease is a serious illness that

6 disproportionately affects African-Americans.

7 (2) Approximately 1 out of every 12 African8 Americans is born with the sickle cell trait, and
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1 about 1 out of every 600 is afflicted with Sickle Cell

2 Disease.

3 (3) Sickle cell conditions also occur in other

4 United States populations, primarily those of Puerto

5 Rican, Cuban, southern Italian ancestry and more

6 recently sickle cell has been found in some Cauca7 sian individuals.

8 (4) Sickle Cell Disease is a painful and dis9 abling disorder which can lead to untimely death

10 and is caused by inadequate transportation of oxy11 gen due to an abnormal type of hemoglobin molecule

12 in the red blood cells.

13 (5) Sickle Cell Disease is an inherited disease

14 which can be transmitted to offspring, particularly if

15 both parents carry the genetic trait.

16 (6) The sickle cell trait carriers show no sign of

17 the disease, but statistically, 1 in 4 of their children

18 will be afflicted with the disease.

19 (7) There is no national research center devoted

20 to Sickle Cell Disease in the United States.

21 (8) There is no known cure for Sickle Cell Dis22 ease at this time and there is a need for prioritized

23 and specialized research to find such a cure for this

24 severely disabling disease.
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1 (9) Louisiana’s minority population is

2 1,299,281.

3 (10) Of this number, a suspected 3,248 individ4 uals will have the disease and of those individuals,

5 25 percent (812 individuals) will have the most

6 acute and serious stage of Sickle Cell Disease, a

7 stage that is usually fatal.

8 (11) Some 129,928 individuals in Louisiana will

9 carry the sickle cell trait.

10 (12) Southern University, located in Baton

11 Rouge, Louisiana is the largest predominately Afri12 can-American university in the United States.

13 (13) Approximately 16,700 students attend this

14 112 year old school and Southern graduates are lo15 cated throughout the United States and the world.

16 (14) The State of Louisiana through the Lou17 isiana Legislature and Southern University, has

18 shown great leadership and committed significant fi19 nancial and personnel resources towards the develop20 ment of a National Center for Sickle Cell Disease

21 Research.

22 (15) Because Southern University has commit23 ted its resources and personnel to seeing this project

24 through to its ultimate goal, finding a cure for Sick25 le Cell Disease, and because of Southern Univer-
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1 sity’s large minority population it is appropriate to

2 locate the National Center for Sickle Cell Disease

3 Research at Southern University in Baton Rouge.

4 (b) PURPOSE.—It is the purpose of this Act to estab5 lish a National Center for Sickle Cell Disease at Southern

6 University in Baton Rouge, Louisiana, that will have the

7 following objectives—

8 (1) to conduct biomedical research and clinical

9 investigations designed to find a cure for Sickle Cell

10 Disease;

11 (2) to conduct a wide variety of human behav12 ioral studies designed to provide new knowledge

13 about such issues as the effectiveness of various

14 counseling and education methods, and techniques to

15 improve coping skills on the part of patients and

16 their families;

17 (3) to establish collaborative arrangements and

18 joint research programs and projects with other

19 Louisiana institutions of higher education, such as

20 Louisiana State University Medical Centers at New

21 Orleans and Shreveport and Tulane University Med22 ical Center to conduct clinical trials on anti-sickling

23 agents;

24 (4) to provide expanded opportunities for fac25 ulty members at the institutions described in para-
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1 graph (3) to publish in the three broad areas of

2 basic biomedical research, psychosocial research and

3 clinical research;

4 (5) to become a laboratory for training both

5 graduate and undergraduate students in research

6 methods and techniques concerning Sickle Cell Dis7 ease; and

8 (6) to develop, promote and implement joint re9 search projects with other public and private higher

10 education institutions including teaching hospitals

11 on Sickle Cell Disease.

12 SEC. 2. NATIONAL CENTER FOR SICKLE CELL DISEASE RE13 SEARCH.

14 (a) GRANT.—The Secretary of Health and Human

15 Services shall award a grant to the Louisiana Department

16 of Health and Hospitals for the establishment and con17 struction of the National Center for Sickle Cell Disease

18 Research at Southern University in Baton Rouge, Louisi19 ana, and for related facilities and equipment at such Cen20 ter. Prior to the awarding of such grant, the State of Lou21 isiana shall certify to the Secretary—

22 (1) that the State of Louisiana has provided

23 not less than $7,000,000 to support and operate

24 such Center; and
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1 (2) that the State of Louisiana has developed a

2 plan to provide funds for the continued operation

3 and support of such center.

4 (b) AUTHORIZATION OF APPROPRIATIONS.—There is

5 authorized to be appropriated $21,000,000 to carry out

6 the purposes of this Act.

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