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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.
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