S. 1442 (104th): 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.

104th Congress, 1995–1996. Text as of Dec 04, 1995 (Introduced).

Status & Summary | PDF | Source: GPO

S 1442 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.