[Congressional Bills 114th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 627 Agreed to Senate (ATS)]

<DOC>






114th CONGRESS
  2d Session
S. RES. 627

 Designating December 3, 2016, as ``National Phenylketonuria Awareness 
                                 Day''.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                            December 1, 2016

   Mr. Isakson (for himself and Ms. Baldwin) submitted the following 
             resolution; which was considered and agreed to

_______________________________________________________________________

                               RESOLUTION


 
 Designating December 3, 2016, as ``National Phenylketonuria Awareness 
                                 Day''.

Whereas phenylketonuria (in this preamble referred to as ``PKU'') 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 PKU is also referred to as 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, in 2014, the American College of Medical Genetics and Genomics and 
        Genetic Metabolic Dieticians International published medical and dietary 
        guidelines on the optimal treatment of PKU;
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, 2016, as ``National 
        Phenylketonuria Awareness Day'';
            (2) encourages all people in the United States to become 
        more informed about phenylketonuria and the role of medical 
        foods in treating phenylketonuria; and
            (3) respectfully requests that the Secretary of the Senate 
        transmit an enrolled copy of this resolution to the National 
        PKU Alliance, a nonprofit organization dedicated to improving 
        the lives of individuals with phenylketonuria.
                                 <all>