I was not adequately prepared for the level of stress and frustration that accompanied today’s proceedings. We knew that the Department of Health had been “shopping around” their amendments and … Continue reading SB983 – Out of House Human Services Committee
PENNSYLVANIA – it’s time for action!
We’ve been waiting (not so patiently) to be able to tell you that we have important legislation that will be introduced VERY soon, and if it is signed into law (which is likely given the broad support we have) Krabbe will finally be mandatory by default.
Hannah’s Law (Act 148 of 2014) was created to make screening for Krabbe mandatory; however, it has yet to be fully implemented because PA’s NBS system is broken.
This bill will not only fix Pennsylvania’s broken NBS system and ensure that EVERY baby is screened equally (right now your zip code determines what diseases are included on your baby’s NBS panel), but it will fully implement Hannah’s Law at last.
What can you do? If you live in Pennsylvania, you can send a note like the one below (or copy/paste if you want) to request that your legislator CO-SPONSOR the legislation.
It will be called H.B. 730 – in honor of Tori’s birthday ❤ We were so surprised and honored by that!
If you share this post PLEASE make sure our text accompanied it. Otherwise it will just be the link to the memo.
If you want to copy/paste the following, feel free! You can find your representative’s info here: https://www.legis.state.pa.us/cfdocs/legis/home/member_information/contact.cfm?body=H
My family and I are residents of your district and wanted to make you aware of a bill in hopes that you would sign on as a co-sponsor.
It will be numbered H.B. 730, the numbers representing a precious girl’s birthday. Victoria Brackbill passed away from Krabbe Leukodystrophy in March 2016 at 20 months of age. Her life could have been saved had she been screened for Krabbe at birth.
Victoria’s family has been working with the Dept. of Health, Rep. Cruz (who authored Act 148 of 2014), Dr. Levine, and others over the past few years to help them to see the weaknesses in Pennsylvania’s Newborn Screening program, and they have listened. The fight has become about so much more than Krabbe being one of the mandatory screenings in PA – it has become about making the program better and more equal as a whole.
Pennsylvania currently ranks 2nd to LAST in the nation for the number of diseases for which every baby is screened. As you will read in this memo, your zip code determines life or death if you’re born with one of these diseases that can be treated if caught at birth. That is simply unacceptable and we’re seeking to change that.
This isn’t a partisan issue – this is a human issue.
If H.B. 730 is signed into law (which is likely will be as the Governor also supports our efforts), Krabbe will become mandatory by default. More importantly, though, every single baby born in Pennsylvania will be screened for the exact same diseases and have the same chance at life as all the other babies.
Thank you in advance for your consideration, and hopefully your support.
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 … Continue reading Update on the Implementation of Hannah’s Law
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 … Continue reading Take Action to Implement Newborn Screening in PA
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.
Karen M. Murphy, PhD RN
Secretary of Health
Pennsylvania Department of Health
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. … Continue reading The Push for Implementation of Hannah’s Law (Act 148 of 2014) in Pennsylvania
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 … Continue reading Tori in the News