[Congressional Bills 104th Congress]
[From the U.S. Government Publishing Office]
[S. 1442 Introduced in Senate (IS)]







104th CONGRESS
  1st Session
                                S. 1442

  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

                            December 4, 1995

 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.

    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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