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House of Representatives
Session of 2013 - 2014 Regular Session


Posted: September 2, 2014 03:18 PM
From: Representative Jerry Stern
To: All House members
Subject: Newborn screening - NKH
In the near future, I plan to introduce legislation that, if enacted, would 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.

I hope you will join in co-sponsoring this important legislation. Currently, four states—Connecticut, Illinois, Kentucky and Tennessee—have NKH screening. Thank you for your interest and support.

Introduced as HB2479