The Push for Implementation of Hannah’s Law (Act 148 of 2014) in Pennsylvania

After over a year of lobbying by the parents of Hannah Ginion, Hannah’s Law (Act 148 of 2014) was signed into law by Governor Tom Corbett on October 15, 2014.

The full text of the act is as follows:

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).

(iv)  Galactosemia.

(v)  Congenital adrenal hyperplasia (CAH).

(vi)  Primary congenital hypothyroidism.

(vii)  Certain Lysosomal storage disorders (LSDs), including:

(A)  Globoid Cell Leukodystrophy (Krabbe).

(B)  Fabry.

(C)  Pompe.

(D)  Niemann-Pick.

(E)  Gaucher.

(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.”

Read More at:

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.


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
Phone: 717-787-6436
Fax: 717-787-0191

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: – 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: 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!

One thought on “The Push for Implementation of Hannah’s Law (Act 148 of 2014) in Pennsylvania

  1. Here’s the response I received after my email yesterday:

    “Dear Bayley,

    Thank you for writing. The Department of Health will do everything in its power to ensure that babies with genetic diseases receive timely and appropriate care. We understand that these cases can be devastating for families, and are working diligently to implement the act efficiently and with compassion.

    The law passed by the legislature calls for the Newborn Screening Advisory Committee to approve any newborn screening test changes before they are implemented. In the coming weeks, the Department will be meeting with the Committee to ensure we are moving forward to protect children and their families. The department cannot move forward without the approval of this committee. The plan is to begin testing in February 2015, pending approval of the committee.

    Though the Krabbe legislation, which was signed into law in October 2014, called for implementation within 60 days, resources were not allocated to appropriately administer these screenings. While the budget impasse is ongoing, and adding these new screenings could cost up to $3 million dollars annually, we are looking at ways to begin approved testing regardless of the challenges.”

    Please be assured that the Department is committed to improving the health of all Pennsylvania newborns.

    Karen M. Murphy, PhD RN
    Secretary of Health
    Pennsylvania Department of Health”

    Liked by 1 person

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