S*1425 Concurrent Resolution, By Lourie
 A CONCURRENT RESOLUTION TO MEMORIALIZE CONGRESS TO MANDATE NEWBORN SCREENING
 TESTING FOR SEVERE COMBINED IMMUNODEFICIENCY TO REDUCE THE NUMBER OF SENSELESS
 DEATHS ASSOCIATED WITH A LATE DIAGNOSIS OF THIS OFTEN DEADLY DISEASE.

   05/16/06  Senate Introduced, adopted, sent to House SJ-10
   05/17/06  House  Introduced HJ-24
   05/17/06  House  Referred to Committee on Invitations and Memorial
                     Resolutions HJ-24
   05/17/06  House  Committee report: Favorable Invitations and
                     Memorial Resolutions HJ-98
   05/18/06  House  Adopted, returned to Senate with concurrence HJ-68
   05/18/06         Scrivener's error corrected

COMMITTEE REPORT

May 17, 2006

S. 1425

S. Printed 5/17/06--H.    [SEC 5/18/06 4:09 PM]

Read the first time May 17, 2006.

To whom was referred a Concurrent Resolution (S. 1425) to memorialize Congress to mandate newborn screening testing for Severe Combined Immunodeficiency, etc., respectfully

That they have duly and carefully considered the same and recommend that the same do pass:

ROBERT W. LEACH, SR for Committee.

TO MEMORIALIZE CONGRESS TO MANDATE NEWBORN SCREENING TESTING FOR SEVERE COMBINED IMMUNODEFICIENCY TO REDUCE THE NUMBER OF SENSELESS DEATHS ASSOCIATED WITH A LATE DIAGNOSIS OF THIS OFTEN DEADLY DISEASE.

Whereas, Severe Combined Immunodeficiency (SCID) is a rare primary immunodeficiency disease caused by a number of different genetic defects, which lead to extreme susceptibility to infection. SCID is generally considered to be the most serious of the primary immunodeficiencies; and

Whereas, SCID affects an estimated one in fifty thousand babies; however, scientists believe it may be even more prevalent due to the lack of diagnosis in many cases; and

Whereas, SCID is a curable disease if a diagnosis is made early enough in the child's life; and

Whereas, the cure for SCID is a bone marrow transplant, which has greater than a ninety percent success rate when performed before the onslaught of a severe infection; and

Whereas, the cost of a bone marrow transplant is a small fraction of the costs associated with multiple and prolonged hospitalizations for severe infections in children with SCID; and

Whereas, there is currently no screening test for SCID and approximately half of the babies born with SCID are detected only after they develop a severe infection. For many of these babies who develop infections, it is too late for a bone marrow transplant and they die as a result of the secondary infection; and

Whereas, the National Institute of Health in conjunction with other parties is currently working to develop a newborn screening test; and

Whereas, it is the hope of the doctors studying this disease, the parents of children affected with SCID, and the families grieving the loss of an affected child, that a newborn screening test can be developed and mandated to diagnose this disease early enough to prevent needless deaths of affected children. Now, therefore,

Be it resolved by the Senate, the House of Representatives concurring:

That the members of the General Assembly of the State of South Carolina, by this resolution, memorialize Congress to mandate testing at birth for Severe Combined Immunodeficiency to reduce the number of senseless deaths associated with a late diagnosis of this often deadly disease.

Be it further resolved that a copy of this resolution be forwarded to the members of the South Carolina Legislative Delegation of the United States Congress and to Dr. Rebecca Buckley, Department of Pediatrics, Division of Allergy and Immunology, Duke University Medical Center 2898, Durham, North Carolina, 27710.