Update on the Implementation of Hannah’s Law

We have an update on the status of Hannah’s Law (Act 148 of 2014).

Read 2014 Act 148 – PA General Assembly here.

I started making phone calls about three weeks ago to determine when the Newborn Screening Advisory Committee would be meeting so that Brennan, Tori, and I could attend.

I found out that the Committee met on December 17, 2015.

(Remember that we all wrote to the Department of Health in November and not a single person mentioned this to us.)

It took a few more phone calls to find out what was decided (since they did not post an update in the PA Bulletin), but I finally reached the correct person and received the following information:

I spoke with the Director of the Division of Newborn Screening and Genetics.

She informed me that the panel decided to only make screening for Pompe (just one of the genetic conditions in Hannah’s Law) mandatory statewide. Pompe is the only one of the LSDs that is currently on the Recommended Uniform Screening Panel  which is why they added that to the Pennsylvania panel.

It is now up to each hospital whether or not to screen for the other lysosomal storage disorders (LSD) in the law.

“Where you live should not decide whether you live or whether you die.” – U2

I asked her if the hospitals would screen for Krabbe if parents asked for it, and she said no, but that they would refer them to Hunter’s Hope for the supplemental screening kits. This information conflicts with what our research told us – that the hospital would test if you specifically ask – so it is safer to just order the kits since we aren’t sure what is actually happening.

All of this supposedly went into effect on Friday, February 5, 2016.

Here’s the problem: we have confirmed ourselves that several Pennsylvania hospitals are telling people that they are screening for these diseases and we can say with confidence that they are NOT screening. NO hospital in Pennsylvania is actually screening for Krabbe or the other LSDs in Hannah’s Law right now. 


 

Tori, Brennan, and I went to the State Capitol today and met with the staff of two different legislators to discuss this issue and to talk about possibly introducing new legislation to change the way that Newborn Screening is done in Pennsylvania, because it shouldn’t be up to the hospital to choose. Lives are at stake and geography shouldn’t dictate life or death.

Tori had fun lobbying with us : )


 

We cannot say much more at this point, nor do we have any actions for you to take. Things are happening and it’s exciting, we just cannot share the information quite yet. We wanted to provide this small update since so many have asked us lately about Hannah’s Law being implemented.

The legislature will be back in session in March and we hope to have additional updates for you at that time.

It never hurts to write to your representatives and Hunter’s Hope has made that incredibly simple! Go to this link and you can customize a letter they wrote and it will go to the appropriate people.

We feel encouraged by our meetings today and by the potential for great change to happen in Pennsylvania that will save lives. However, we also know that the fight is only beginning.

 

Take Action to Implement Newborn Screening in PA

Tori’s story being in the news last week has started an amazing campaign to get Pennsylvania to start screening all newborns for Krabbe and other similar genetic diseases! 

The law was passed over a year ago but has yet to be implemented.

Hunter’s Hope has created a form to make it very easy for Pennsylvania residents to contact their state representatives in regards to the implementation of Act 148 of 2014 (“Hannah’s Law”).

Please send a letter – it takes thirty seconds! Then share this with everyone you can. 

You can personalize the letter for Pennsylvania and send it here.

If you aren’t a resident of Pennsylvania, you can write your own state legislators here.

Let’s make it known that we want newborns to be screened for Krabbe at birth!

Response from Department of Health

This is the letter that several people have been sent in response to the Krabbe screenings:

Sent: Friday, November 06, 2015 12:32 PM
Subject: Re: Krabbe Screening

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.

 Respectfully,

Karen M. Murphy, PhD RN

Secretary of Health

Pennsylvania Department of Health

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

AN ACT

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.

TOM CORBETT

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: http://www.local21news.com/news/features/top-stories/stories/Despite-law-screenings-for-Krabbe-disease-aren-39-t-happening-227853.shtml

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
karmurphy@pa.gov

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:

https://www.facebook.com/pennsylvaniadepartmentofhealth

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!

Tori in the News 

It occurred to us a few days ago that perhaps Tori’s Bucket List could be a catalyst to get Krabbe in the news. After all, everyone loves a positive story about things like this, right?

So, I posted on my Facebook page as well as on Tori’s Triumph this morning, asking for any media connections that people may have so that we could get the word out, not expecting to hear anything for days or weeks.

Later this afternoon I got a call from CBS 21 here in Harrisburg asking me some questions; we then got another phone call at 6:30pm asking if the reporter could come by at 7:30pm! 

Funny connection: the reporter and I actually met a month ago when I was driving for UBER! He remembered me, too. Amazing how God creates what seem like totally random connections for a purpose.

They aired the interview at 10pm and 11pm and you can see it here.

Please share this like crazy – we need the word Krabbe to become so commonplace that the government will feel compelled to take action.

We are so thankful for these opportunities to make Krabbe known. Lives are at stake and we must get Krabbe added to every state’s newborn screenings!