[Congressional Record Volume 141, Number 191 (Monday, December 4, 1995)]
[Senate]
[Pages S17924-S17925]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. JOHNSTON:
  S. 1442. 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; to the 
Committee on Labor and Human Resources.


the national center for sickle cell disease research establishment act 
                                of 1995

 Mr. JOHNSTON. Mr. President, I introduce legislation that will 
support research for a disease which disproportionately affects 
African-Americans and other minority groups. Sickle cell disease is a 
painful, life-threatening, genetic disease. Approximately 1 of every 12 
African-Americans is born with the sickle cell genetic trait, and about 
1 in every 600 is afflicted with sickle cell disease. Sickle cell 
conditions are also found, although less frequently, in other United 
States populations, including those of Puerto Rican, Cuban, and 
southern Italian ancestry. The disease has also recently been found in 
some Caucasians.
  Sickle cell disease is based in the circulatory system and is a 
painful and disabling disorder for which there is currently no cure. In 
a healthy body, red blood cells contain the substance hemoglobin which 
carries oxygen from the lungs to various organs and tissues. This role 
of hemoglobin is essential to life because all body components require 
oxygen to live and carry out their functions. Diseased bodies have an 
abnormal type of hemoglobin which interrupts the flow of oxygen to 
these vital organs.
  Red blood cells that contain normal hemoglobin remain round when they 
release oxygen. Cells with abnormal or sickle hemoglobin, upon 
releasing oxygen, become distorted into the shape of a sickle causing a 
chronic and painful anemia. Distorted, or sickled cells cannot traverse 
capillaries, further limiting oxygen supply to the body's tissues.
  Mr. President, the minority population in the State of Louisiana is 
about 1.29 million people. Of this number roughly 3,250 people are 
suspected of having the disease, and of this number, 25 percent will 
have the most acute and serious form, which is often fatal. Alarmingly, 
about 130,000 Louisianians carry the genetic trait for this illness.
  Mr. President, despite the fact that the cause of the sickle cell 
disease has been known for many years, progress has not been made in 
finding suitable treatment. Currently, the most common treatment for 
the illness is pain relief medication, treating only the immediate 
symptoms. Treating only the symptoms results in tissue damage, often to 
major organs, with each successive episode of oxygen deprivation. 
Consequently, many of those afflicted with severe forms of the disease 
often do not even live to see adulthood.
  Concerned with finding a cure for a disease that has such a 
devastating effect on the Nation's minority populations, Southern 
University in Baton Rouge, LA, the largest predominately African-
American university in the United States, has committed itself to the 
creation of a center for sickle cell disease research.
  With a single purpose, this center will conduct multidisciplinary 
research to lead to the discovery of a cure for sickle cell disease. 
The center will conduct basic biomedical research to determine the 
types of drugs that can prevent, inhibit, or reverse the sickling 
process, along with clinical research and joint studies to 
conduct clinical trials on antisickling agents. In addition, the center 
will work with other institutions to promote and enhance scholarship 
and teaching knowledge in order to disseminate newly gained knowledge 
on the disease.

  Mr. President, it is important to note that the Louisiana State 
Legislature in recognition of the importance of such a center, and even 
in these exceedingly hard economic times, has committed $7 million to 
this project. To complete the center, and to be able to provide this 
valuable public health research, Southern University needs Federal 
assistance. To provide this assistance, I offer a bill to authorize the 
Secretary of Health and Human Services to award a grant for the 
creation of this center. This legislation will direct the Secretary to 
provide 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.
  Mr. President, sickle cell disease is a vital public health problem 
which this bill would assist in overcoming. Such funding can only aid 
in the development of this Nation. I urge my colleagues to support this 
important legislation.
  Mr. President, I ask unanimous consent that the text of the bill be 
printed in the Record.
  There being no objection, the bill was ordered to be printed in the 
Record, as follows:

                                S. 1442

       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 cause 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 

[[Page S 17925]]
     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. 
                                 ______