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

III 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 in- tellectual 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 Hydroxy- lase Deficiency; Whereas newborn screening for PKU was initiated in the United States in 1963 and was recommended for inclu- sion in State newborn screening programs under the VerDate Sep 11 2014 22:50 Dec 09, 2019 Jkt 099200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6300 E:\BILLS\SR448.ATS SR448 lotter on DSKBCFDHB2PROD with BILLS 2 •SRES 448 ATS 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 Con- ference 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 Inter- national 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, im- pulse 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 phenyl- ketonuria syndrome’’, which can cause small brains, intel- lectual disabilities, birth defects of the heart, and low birth weights; Whereas, although there is no cure for PKU, treatment in- volving medical foods, medications, and restriction of VerDate Sep 11 2014 22:50 Dec 09, 2019 Jkt 099200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6300 E:\BILLS\SR448.ATS SR448 lotter on DSKBCFDHB2PROD with BILLS 3 •SRES 448 ATS 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 ef- fects on individuals with PKU, their families, and society; Whereas scientists and researchers are hopeful that break- throughs 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 com- munity: Now, therefore, be it Resolved, That the Senate— 1 (1) designates December 3, 2019, as ‘‘National 2 Phenylketonuria Awareness Day’’; 3 (2) encourages all people in the United States 4 to become more informed about phenylketonuria and 5 the role of medical foods in treating phenyl- 6 ketonuria; and 7 (3) respectfully requests that the Secretary of 8 the Senate transmit an enrolled copy of this resolu- 9 tion to the National PKU Alliance, a nonprofit orga- 10 VerDate Sep 11 2014 22:50 Dec 09, 2019 Jkt 099200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\SR448.ATS SR448 lotter on DSKBCFDHB2PROD with BILLS 4 •SRES 448 ATS nization dedicated to improving the lives of individ- 1 uals with phenylketonuria. 2 Æ VerDate Sep 11 2014 22:50 Dec 09, 2019 Jkt 099200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6301 E:\BILLS\SR448.ATS SR448 lotter on DSKBCFDHB2PROD with BILLS