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[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 469 Agreed to Senate (ATS)]

<DOC>

117th CONGRESS
  1st Session
S. RES. 469

 Designating December 3, 2021, as ``National Phenylketonuria Awareness 
                                 Day''.

_______________________________________________________________________

                   IN THE SENATE OF THE UNITED STATES

                            December 6, 2021

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

_______________________________________________________________________

                               RESOLUTION

 
 Designating December 3, 2021, 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 that 
        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 first initiated in the United States in 
        1963, became mandatory in most States in 1966, and was 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 PKU;
Whereas PKU is treated with medical foods that limit phenylalanine;
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 
        in 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 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 medical foods varies across the United States and the long-
        term costs associated with caring for untreated children and adults with 
        PKU have a substantial financial impact on families, individuals, and 
        society;
Whereas access to medical foods can prevent detrimental effects 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 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, 2021, as ``National 
        Phenylketonuria Awareness Day'';
            (2) encourages all individuals 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>
```