[Congressional Record Volume 160, Number 143 (Thursday, November 20, 2014)]
[Senate]
[Page S6207]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                         SUBMITTED RESOLUTIONS

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  SENATE RESOLUTION 585--DESIGNATING DECEMBER 3, 2014, 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. 585

       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 which 
     causes intellectual disability and other neurological 
     problems, such as memory loss and mood disorders, when 
     treatment is not started within the first few weeks of life;
       Whereas phenylketonuria is also referred to as ``PKU'' or 
     Phenylalanine Hydroxylase Deficiency;
       Whereas newborn screening for PKU was initiated in the 
     United States in 1963 and was recommended for inclusion in 
     State newborn screening programs under the Newborn Screening 
     Saves Lives Act of 2007 (Public Law 110-204);
       Whereas approximately 1 out of every 15,000 infants in the 
     United States is born with PKU;
       Whereas PKU is treated with medical food;
       Whereas the 2012 Phenylketonuria Scientific Review 
     Conference affirmed the recommendation of lifelong dietary 
     treatment for PKU made by the National Institutes of Health 
     Consensus Development Conference Statement 2000;
       Whereas the American College of Medical Genetics and 
     Genomics and Genetic Metabolic Dieticians International 
     published medical and dietary guidelines on the optimal 
     treatment of PKU in 2014;
       Whereas medical foods are medically necessary for children 
     and adults living with PKU;
       Whereas adults with PKU who discontinue treatment are at 
     risk for serious medical issues such as depression, impulse 
     control disorder, phobias, tremors, and pareses;
       Whereas women with PKU must maintain strict metabolic 
     control before and during pregnancy to prevent fetal damage;
       Whereas children born from untreated mothers with PKU may 
     have a condition known as ``maternal phenylketonuria 
     syndrome'', which can cause small brains, intellectual 
     disabilities, birth defects of the heart, and low birth 
     weights;
       Whereas although there is no cure for PKU, treatment 
     involving medical foods, medications, and restriction of 
     phenylalanine intake can prevent progressive, irreversible 
     brain damage;
       Whereas access to health insurance coverage for medical 
     food varies across the United States, and the long-term costs 
     associated with caring for untreated children and adults with 
     PKU far exceed the cost of providing medical food treatment;
       Whereas gaps in medical foods coverage has a detrimental 
     impact on individuals with PKU, their families, and society;
       Whereas scientists and researchers are hopeful that 
     breakthroughs in PKU research will be forthcoming;
       Whereas researchers across the United States are conducting 
     important research projects involving PKU; and
       Whereas the Senate is an institution that can raise 
     awareness of PKU among the general public and the medical 
     community: Now, therefore, be it
       Resolved, That the Senate--
       (1) designates December 3, 2014, 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.

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