[Congressional Record Volume 159, Number 167 (Thursday, November 21, 2013)]
[Senate]
[Page S8465]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




  SENATE RESOLUTION 310--DESIGNATING DECEMBER 3, 2013, AS ``NATIONAL 
                    PHENYLKETONURIA AWARENESS DAY''

  Mr. ISAKSON (for himself and Ms. Baldwin) submitted the following 
resolution; which was referred to the Committee on the Judiciary:

                              S. Res. 310

       Whereas phenylketonuria is a rare, inherited metabolic 
     disorder that is characterized by the inability of the body 
     to process the essential amino acid phenylalanine and causes 
     mental retardation and other neurological problems, such as 
     memory loss and mood disorders, when treatment is not started 
     within the first few weeks of life;
       Whereas newborn screening for phenylketonuria was initiated 
     in the United States in 1963 and recommended for inclusion in 
     State newborn screening programs under the Newborn Screening 
     Saves Lives Act of 2007 (Public Law 110-204; 122 Stat. 705);
       Whereas approximately 1 out of every 15,000 infants in the 
     United States is born with phenylketonuria;
       Whereas the Phenylketonuria Scientific Review Conference in 
     2012 affirmed the recommendation of lifelong dietary 
     treatment for phenylketonuria made by the National Institutes 
     of Health Consensus Development Conference Statement 2000;
       Whereas women with phenylketonuria must maintain strict 
     metabolic control before and during pregnancy to prevent 
     fetal damage;
       Whereas a child born from an untreated mother with 
     phenylketonuria may have a condition known as ``maternal 
     phenylketonuria syndrome'', which can cause a small brain, an 
     intellectual disability, birth defects of the heart, and a 
     low birth weight;
       Whereas phenylketonuria is treated with medical food;
       Whereas although there is no cure for phenylketonuria, 
     treatment involving medical food and restricting 
     phenylalanine intake can prevent progressive, irreversible 
     brain damage;
       Whereas maintaining a strict medical diet for 
     phenylketonuria can be difficult to achieve, and poor 
     metabolic control can result in a significant decline in 
     mental and behavioral performance;
       Whereas access to health insurance coverage for medical 
     food varies across the United States;
       Whereas the long-term costs associated with caring for 
     untreated children and adults exceed the cost of providing 
     medical food treatment;
       Whereas scientists and researchers are hopeful that 
     breakthroughs in phenylketonuria research will be 
     forthcoming;
       Whereas researchers across the United States are conducting 
     important research projects involving phenylketonuria; and
       Whereas the Senate is an institution that can raise 
     awareness of phenylketonuria among the general public and the 
     medical community: Now, therefore, be it
       Resolved, That the Senate--
       (1) designates December 3, 2013, as ``National 
     Phenylketonuria Awareness Day'';
       (2) encourages all people in the United States to become 
     more informed about phenylketonuria; and
       (3) respectfully requests that the Secretary of the Senate 
     transmit a copy of this resolution to the National PKU 
     Alliance, a non-profit organization dedicated to improving 
     the lives of individuals with phenylketonuria.

                          ____________________