[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 585 Introduced in Senate (IS)]

113th CONGRESS
  2d Session
S. RES. 585

 Designating December 3, 2014, as ``National Phenylketonuria Awareness 
                                 Day''.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           November 20, 2014

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

_______________________________________________________________________

                               RESOLUTION


 
 Designating December 3, 2014, as ``National Phenylketonuria Awareness 
                                 Day''.

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 have 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.
                                 <all>