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[Pages S6906-S6907]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
SUBMITTED RESOLUTIONS
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SENATE RESOLUTION 448--DESIGNATING DECEMBER 3, 2019, AS ``NATIONAL
PHENYLKETONURIA AWARENESS DAY''
Mr. ISAKSON (for himself, Ms. Baldwin, and Ms. Warren) submitted the
following resolution; which was considered and agreed to:
S. Res. 448
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 foods;
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 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
foods 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 foods treatment;
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, 2019, 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.
[[Page S6907]]
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