S.Res. 448Senate116th Congress (2019-2021)Passed Congress

A resolution designating December 3, 2019, as "National Phenylketonuria Awareness Day".

Introduced December 9, 2019

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Updated April 14, 2026 at 9:56 AM UTC

This Senate resolution sets December 3, 2019 as National Phenylketonuria (PKU) Awareness Day. It aims to increase public and medical‑community knowledge about PKU, a rare inherited disorder, and the importance of medical foods for treatment. The resolution also asks the Senate’s Secretary to send a copy of the resolution to the National PKU Alliance, a nonprofit that supports people with PKU.

Key Provisions

  • Designates December 3, 2019 as National Phenylketonuria Awareness Day.
  • Encourages all U.S. residents to learn more about PKU and the role of medical foods in its treatment.
  • Requests that the Senate Secretary transmit an enrolled copy of the resolution to the National PKU Alliance.

Legislative Activity

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Submitted in the Senate, considered, and agreed to without amendment and with a preamble by Unanimous Consent. (consideration: CR S6907; text: CR S6906)

December 9, 2019

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Introduced in Senate

December 9, 2019

SenateFloor

Submitted in the Senate, considered, and agreed to without amendment and with a preamble by Unanimous Consent. (consideration: CR S6907; text: CR S6906)

December 9, 2019

Bill Text

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Agreed to SenateIssued December 9, 2019

III

116th CONGRESS

1st Session

S. RES. 448

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

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.