The full text of the act is as follows:
NEWBORN CHILD TESTING ACT –
NEWBORN CHILD SCREENING
AND FOLLOW-UP PROGRAM
Act of Oct. 15, 2014, P.L. 2516, No. 148 Cl. 35
Session of 2014 No. 2014-148 HB 1654
Amending the act of September 9, 1965 (P.L.497, No.251), entitled, as amended, “An act requiring physicians, hospitals and other institutions to administer or cause to be administered tests for genetic diseases upon infants in certain cases,” further providing for newborn child screening and follow-up program.
The General Assembly of the Commonwealth of Pennsylvania hereby enacts as follows:
Section 1. Section 3(a)(1) of the act of September 9, 1965 (P.L.497, No.251), known as the Newborn Child Testing Act, amended July 4, 2008 (P.L.288, No.36), is amended to read:
Section 3. Newborn Child Screening and Follow-up Program.–(a) In order to assist health care providers to determine whether treatment or other services are necessary to avert mental retardation, permanent disabilities or death, the department, with the approval of the Newborn Screening and Follow-up Technical Advisory Committee, shall establish a program providing for:
(1) The screening tests of newborn children for the following diseases:
(i) Phenylketonuria (PKU).
(ii) Maple syrup urine disease (MSUD).
(iii) Sickle-cell disease (hemoglobinopathies).
(v) Congenital adrenal hyperplasia (CAH).
(vi) Primary congenital hypothyroidism.
(vii) Certain Lysosomal storage disorders (LSDs), including:
(A) Globoid Cell Leukodystrophy (Krabbe).
(F) Hurler Syndrome (MPS I).
* * *
Section 2. This act shall take effect in 60 days.
APPROVED–The 15th day of October, A.D. 2014.
The Act didn’t just add Krabbe – it added several other genetic diseases that require treatment as early as possible in order to save the child’s life.
The government said at the time that it would take one year to begin testing in order to allow the labs time to prepare to add these diseases to their screenings.
One year has come and gone.
A spokesperson from the PA Department of Health gave this statement when asked about the screenings by CBS21:
“The Department is currently discussing the exact date for testing to begin. It has not yet been finalized.”
Each day that passes without these screenings in place puts more children at risk. Needless deaths are going to happen because these children weren’t even given a chance for life.
It is rumored that it is because of finances, especially since Pennsylvania does not yet have an approved budget for the fiscal year. As of March, the proposed budget included increased funding for the added screenings, but since the budget has yet to be signed, it is useless.
MONEY SHOULDN’T PUT THE LIVES OF BABIES AT RISK.
It is our hope that, with your support and assistance, we can push them to implement testing NOW.
How can you help?
Let’s start by contacting Dr. Karen Murphy and politely requesting that testing begin. Her contact info, per the state directory, is:
Dr. Karen Murphy PhD, RN
Secretary of Health
Address: Health & Welfare Building,
7th & Forster Streets
Harrisburg, Pennsylvania 17120
We can also call the Newborn Screening and Follow-Up Program directly: 717-783-8143
Here is the Department of Health’s Facebook page:
And they are on Twitter here: https://twitter.com/PAHealthDept – please use a hashtag like #MakeKrabbeKnown #NewbornScreening #KrabbeAwareness or something similar to see if we can start a trend. Here is the tweet we sent: https://twitter.com/The_Brackbills/status/662304148403167232 if you’d like to retweet it.
Hannah got the law passed; perhaps Tori, Grayson, and Zander can get it implemented.
Please contact them (with kindness, please) and keep asking why Krabbe isn’t being screened for at birth. This will make all the difference in the world to future parents of babies with Krabbe and other similar diseases.
And PLEASE let us know what they say! Comment here or on Tori’s Triumph-Team Tori on Facebook.
Let’s do this!