It’s been a very long ten days.

Ten days ago we weren’t sure if SB983 (our Newborn Screening Legislation) was going to have a fighting chance this session.

Ten days ago it was revealed that the Department of Health knew in July that they were going to oppose our amendment but didn’t say a word until last week, leaving us with no time to negotiate.

Ten days ago I cried out of frustration because I thought SB983 was dead, like two other bills before it. I felt betrayed because the very department I have spent four years trying to help left me in the dark for seven weeks and then came out in opposition. It seemed as though they hadn’t even read the bill until last week!

But, I persevered. I spent hours on the phone, emailing, negotiating, lobbying. I felt like an actual lobbyist brokering a deal between several parties. And together, with my senator’s awesome legislative director, we got the bill scheduled for a committee hearing today. We hadn’t heard anything from the Department of Health before the meeting, so we pressed on.

And it passed UNANIMOUSLY out of committee.

I cried again, but happy tears this time. Senator DiSanto said the kindest things about me, Tori, and my four-year fight to improve Newborn Screening in Pennsylvania. His acknowledgment of my efforts meant so much, especially after the events of last week.

You can see the meeting and his remarks here.

Of course, mere minutes after the bill passed, the Department of Health reached out to the senator’s office and expressed concerns. Thankfully we know what those concerns are and we know that we can overcome them.

This is only the first step, of course. Next it will go to appropriations (formality, really), and I’m working on getting it scheduled for a floor vote on October 5th. If we can get it passed there (I currently have almost half of the senate marked as “in support” – with no opposition – so we’re getting there), it will then go to the House (committee, then floor), and then the Governor’s desk if there are no changes.

All of this has to be completed by December.

I don’t know what’s in store. All I know is that I really don’t want to start all over again in January with a fourth bill.

If you live in Pennsylvania, please contact your legislators and ask them to support SB983. I promise that they listen.