[Congressional Record Volume 164, Number 185 (Monday, November 26, 2018)]
[Senate]
[Pages S7090-S7091]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




  SENATE RESOLUTION 705--DESIGNATING DECEMBER 3, 2018, AS ``NATIONAL 
                    PHENYLKETONURIA AWARENESS DAY''

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

[[Page S7091]]

  


                              S. Res. 705

       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, 2018, 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.

                          ____________________