Bill Summary
This resolution designates December 3, 2019 as "National Phenylketonuria Awareness Day" and aims to raise awareness about PKU, a rare inherited metabolic disorder that can lead to intellectual disability and other neurological problems if left untreated. The resolution highlights the importance of early screening and treatment, as well as the role of medical foods in managing PKU. It also acknowledges the need for improved access to health insurance coverage for medical foods and ongoing research efforts to find a cure for PKU. The resolution calls on the Senate to promote awareness of PKU and its impact on individuals, families, and society and requests that an enrolled copy be transmitted to the National PKU Alliance, a nonprofit organization dedicated to supporting those with PKU.
Possible Impacts
1. People with PKU may be more aware and recognized on December 3rd as it is designated as "National Phenylketonuria Awareness Day".
2. Families and individuals affected by PKU may have increased access to medical foods due to the resolution encouraging people to be more informed about the disorder and its treatment.
3. Researchers and scientists studying PKU may receive more attention and funding as the resolution recognizes their work and encourages breakthroughs in research.
[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 448 Agreed to Senate (ATS)]
<DOC>
116th CONGRESS
1st Session
S. RES. 448
Designating December 3, 2019, as ``National Phenylketonuria Awareness
Day''.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
December 9, 2019
Mr. Isakson (for himself, Ms. Baldwin, and Ms. Warren) submitted the
following resolution; which was considered and agreed to
_______________________________________________________________________
RESOLUTION
Designating December 3, 2019, 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 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.
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