[Congressional Record Volume 154, Number 151 (Tuesday, September 23, 2008)]
[Senate]
[Pages S9346-S9347]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




SUPPORTING THE GOALS AND IDEAS OF NATIONAL SPINA BIFIDA AWARENESS MONTH

  Mr. MENENDEZ. Mr. President, I ask unanimous consent that the HELP 
Committee be discharged from further consideration of S. Res. 661, and 
the Senate proceed to its immediate consideration.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The clerk will report the resolution by title.
  The legislative clerk read as follows:

       A resolution (S. Res. 661) supporting the goals and ideals 
     of National Spina Bifida Awareness Month.

  There being no objection, the Senate proceeded to consider the 
resolution.
  Mr. DODD. Mr. President, I rise today to support, with Senator 
Wicker, a resolution to raise awareness about spina bifida, the most 
common, permanently disabling birth defect. This often devastating 
birth defect occurs during the first month of pregnancy when the spine 
fails to close completely, leaving a permanent opening and resulting in 
a multitude of serious medical complications.
  Thanks to modern medicine and technological advances, most babies 
born with spina bifida--1,500 to 2,000 a year--survive, and many are 
now living longer than ever before. It is estimated that in the United 
States no less than 70,000 people, and possibly as many as 130,000 
people, currently live with spina bifida. This is wonderful progress, 
but there are substantial hurdles that can prevent those with spina 
bifida from reaching their full potential.
  For a person with spina bifida, the body, mind, and spirit are all 
under assault. Most children with the worst form of spina bifida must 
undergo a surgery to insert a permanent shunt to drain fluid from the 
brain for the duration of their lives. People with spina bifida may 
endure any combination of full or partial paralysis, seizures, bladder 
and bowel problems, latex allergies, learning disabilities, depression, 
and other psychosocial issues. The promise of an extended life 
expectancy for individuals with spina bifida may be dampened by the new 
challenges they face in education, job training, independent living, 
health care for secondary conditions and aging concerns. Far more needs 
to be done to improve the quality of life for those suffering with 
spina bifida.
  I applaud the groups that labor so diligently to offer support to the 
many Americans with spina bifida and their families. In particular, I 
extend my gratitude to the Spina Bifida Association, which has been 
dedicated to this important issue for more than three decades. They are 
steadfast advocates for those whose lives have been touched by spina 
bifida, working across our Nation to improve lives through education, 
research, and service.
  The Spina Bifida Association, together with the National Spina Bifida 
Program at the Centers for Disease Control and Prevention and other 
groups, is working hard to spread the word to the 65 million women at 
risk of having a baby born with spina bifida. On any given day in the 
United States, eight births are affected by spina bifida or a similar 
birth defect of the brain and spine. It is estimated that 70 percent of 
birth defects such as spina bifida are preventable by consuming an 
adequate amount of folic acid prior to pregnancy. This is a simple step 
that women can take to reduce their risk, but far more outreach and 
education is required to reach women with this important message.
  It is time to renew our efforts to prevent spina bifida and help the 
many individuals and families living with spina bifida. The resolution 
we will adopt today calls for a greater commitment to spina bifida 
prevention and to improving the quality of life of those affected by 
it, increased funding for evidence-based spina bifida research, and 
further development of the National Spina Bifida Patient Registry. 
Taken together, these efforts will help decrease the incidence of spina 
bifida and improve available treatments and quality of life for those 
living with it. I wholeheartedly urge my colleagues to join with me in 
support of this resolution.
  Mr. MENENDEZ. Mr. President, I ask unanimous consent that the 
resolution be agreed to, the preamble be agreed to, the motions to 
reconsider be laid upon the table, with no intervening action or 
debate, and that any statements relating to the resolution be printed 
in the Record.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The resolution (S. Res. 661) was agreed to.
  The preamble was agreed to.
  The resolution, with its preamble, reads as follows:

                              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

[[Page S9347]]

     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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