[Congressional Record Volume 154, Number 146 (Monday, September 15, 2008)]
[Senate]
[Page S8533]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




  SENATE RESOLUTION 661--SUPPORTING THE GOALS AND IDEALS OF NATIONAL 
                      SPINA BIFIDA AWARENESS MONTH

  Mr. DODD (for himself and Mr. Wicker) submitted the following 
resolution; which was referred to the Committee on Health, Education, 
Labor, and Pensions:

                              S. Res. 661

       Whereas spina bifida is the most common, permanently 
     disabling birth defect;
       Whereas spina bifida occurs during the first month of 
     pregnancy and leaves a permanent opening in the spinal column 
     that subsequently impacts nearly every organ system;
       Whereas an estimated 70,000 to 130,000 people in the United 
     States currently live with spina bifida;
       Whereas all women of childbearing age are at risk of having 
     a spina bifida affected pregnancy;
       Whereas an estimated 70 percent of neural tube defects such 
     as spina bifida can be prevented if a woman consumes adequate 
     amounts of folic acid, which is found in most over-the-
     counter multivitamins and foods rich in folate such as 
     spinach, prior to becoming pregnant;
       Whereas Hispanic women are at the highest risk, between 1.5 
     and 2 times higher than non-Hispanic whites, of delivering a 
     baby with spina bifida or another neural tube defect, yet are 
     the least likely to consume sufficient amounts of folic acid 
     prior to becoming pregnant;
       Whereas people with spina bifida face unprecedented medical 
     complications associated with aging because people with spina 
     bifida are living longer than people with spina bifida in 
     previous generations lived and care for spina bifida is 
     complex and involves myriad clinical specialists;
       Whereas a 2005 nationwide survey of spina bifida clinics 
     revealed that the current system of care serving people with 
     spina bifida does not fully meet current or anticipated needs 
     and physicians have little evidence-based research about 
     spina bifida on which to build neurological, orthopedic, or 
     urologic treatment regimens and interventions;
       Whereas the National Spina Bifida Program, administered by 
     the Centers for Disease Control and Prevention, exists to 
     improve the health, well being, and overall quality of life 
     for the individuals and families affected by spina bifida 
     through numerous programmatic components, including the 
     National Spina Bifida Patient Registry and critical quality 
     of life research in spina bifida;
       Whereas the National Spina Bifida Patient Registry helps to 
     improve the quality of care, to reduce morbidity and 
     mortality from spina bifida, and to increase the efficiency 
     of, and decrease the cost of, care by supporting the 
     collection of longitudinal treatment data, developing quality 
     measures and treatment standards of care and best practices, 
     identifying centers of excellence in spina bifida, evaluating 
     the clinical and cost effectiveness of the treatment of spina 
     bifida, and exchanging evidence-based information among 
     health care providers across the country; and
       Whereas October has been designated as ``National Spina 
     Bifida Awareness Month'' to increase awareness of spina 
     bifida, of ways to prevent spina bifida, and of the need for 
     increased funding to support improving evidence-based 
     research and enhancing the quality of life of those living 
     with spina bifida: Now, therefore, be it
       Resolved, That the Senate--
       (1) supports the goals and ideals of National Spina Bifida 
     Awareness Month and of national organizations working for 
     people with spina bifida;
       (2) recognizes the importance of--
       (A) highlighting the occurrence of spina bifida;
       (B) recognizing the struggles and successes of people who 
     live with spina bifida; and
       (C) advancing efforts to decrease the incidence of spina 
     bifida;
       (3) supports the ongoing development of the National Spina 
     Bifida Patient Registry to improve lives through research and 
     to improve the treatment of spina bifida in both children and 
     adults;
       (4) recognizes that there is a continued need for a 
     commitment of resources for efforts to reduce and prevent 
     disabling birth defects like spina bifida; and
       (5) commends the work of national organizations that 
     educate, support, and provide hope for individuals who are 
     affected by spina bifida and their families.

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