III 

114TH CONGRESS 

2D SESSION S. RES. 627 

Designating December 3, 2016, as ‘‘National Phenylketonuria Awareness 

Day’’. 

IN THE SENATE OF THE UNITED STATES 

DECEMBER 1, 2016 

Mr. ISAKSON (for himself and Ms. BALDWIN) submitted the following 

resolution; which was considered and agreed to 

RESOLUTION 

Designating December 3, 2016, 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 


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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 


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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 

1 Resolved, That the Senate— 

2 (1) designates December 3, 2016, as ‘‘National 

3 Phenylketonuria Awareness Day’’; 

4 (2) encourages all people in the United States 

5 to become more informed about phenylketonuria and 

6 the role of medical foods in treating phenyl7 ketonuria; and 

8 (3) respectfully requests that the Secretary of 

9 the Senate transmit an enrolled copy of this resolu10 tion to the National PKU Alliance, a nonprofit orgaVerDate Sep 11 2014 00:03 Dec 02, 2016 Jkt 069200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\SR627.ATS SR627

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1 nization dedicated to improving the lives of individ2 uals with phenylketonuria. 

Æ 


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