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Pennsylvania House of Representatives
https://www.legis.state.pa.us/cfdocs/Legis/CSM/showMemoPublic.cfm?chamber=H&SPick=20170&cosponId=22773
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House of Representatives
Session of 2017 - 2018 Regular Session

MEMORANDUM

Posted: February 6, 2017 03:35 PM
From: Representative Thomas P. Murt
To: All House members
Subject: Newborn Screening for NKH (prior HB 498)
 
I plan to reintroduce legislation that will amend the Newborn Child Testing Act of 1965 to add Non-ketotic Hyperglycinemia (NKH) to the list of disorders for newborn screening.

NKH, also known as glycine encephalopathy, is a severe and rare disorder affecting about one in every 60,000 live births. NKH impairs nervous tissue, including the brain, leading to symptoms such as seizures, breathing and feeding difficulties, muscle limpness and lethargy. NKH usually becomes apparent soon after birth; however, sometimes symptoms start to arise in later infancy. While there is currently no known cure, detecting NKH early and beginning proper treatment may help prevent or delay some of the severe health outcomes associated with the condition.

While all states require newborn screening for every infant, the number and types of conditions on a state’s screening panel varies from state to state. Pennsylvania currently provides screening and follow-up services for all reported abnormal newborn screening results and follow-up services for 23 additional inherited genetic disorders. My legislation will add NKH to the list of disorders for screening.

Previous cosponsors: MURT, V. BROWN, BROWNLEE, COHEN, HARHAI, HARKINS, HEFFLEY, JAMES, KORTZ, McCARTER, MILLARD, SCHLOSSBERG, SCHWEYER, WARD, WATSON, YOUNGBLOOD and MICCARELLI



Introduced as HB451