I had waited nearly a month for today’s meeting, but it was worth the wait. As you know by now (and if you aren’t aware, you can catch up here), … Continue reading Pursuing a Companion Bill in the Senate
South Carolina passed a bill after this image was created, so they will begin testing in the next 1-2 years.
Indiana expects to begin testing in 2020.
Pennsylvania will hopefully be testing by next year. We have a bill in the legislature (HB 730, numbered for Tori’s birthday) that will make screening equal throughout PA, and Krabbe will become mandatory. If you live in Pennsylvania, please contact your state representatives/senators and ask for their support!
Today was one of those days where everything made sense, once again. It was a day filled with non-coincidences (meaning that God was clearly at work because there’s just no … Continue reading It All Works Together for Good
(Hover over – or tap on – each state to see how many diseases are included on their NBS tests)
September is Newborn Screening Awareness month so we will be providing information throughout the month about Newborn Screening (NBS).
Here’s a brief introduction:
Newborn Screening is a crucial component of ensuring the health of all newborns, yet many parents have no idea what is being done when the test happens.
Newborn Screening (NBS) happens between 24-48 hours of birth and it involves the pricking of the baby’s heel in order to apply blood to special paper (filter paper). The blood is used to test for treatable conditions – conditions for which timing is everything.
Did you know that each state screens for a different number of diseases?
I created the interactive map above to visually demonstrate the discrepancy from state to state, or you can see the chart below. I obtained all of this data from babysfirsttest.org on August 31, 2019.
|State Name||Number of Diseases Screened|
|District of Columbia||62|
According to BabysFirstTest.org there are 80 treatable conditions that could be screened for at birth, but no state screens for all 80. Visit their site to learn more about what diseases are included on your state’s NBS.
This means that your ZIP code determines life or death if you are born with one of these screenable/treatable diseases.
Where you live should not decide whether you live or whether you die. – U2
There is a national panel called the Recommended Uniform Screening Panel, or the RUSP, and there are currently 35 diseases on the RUSP. Many states screen for all of these diseases but not all.
As you can see, there’s a lot of work to be done in the realm of Newborn Screening to ensure that every child is screened equally for all diseases, including Krabbe. One thing you can do is contact your legislators to ask them to take NBS seriously and work on increasing your state’s screening panel.
Comment below with any questions, comments, etc. Do you remember when your child was screened? Did you know what was happening?
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.