Tuesday was a day of great celebration as SB983 passed the Pennsylvania Senate unanimously. Even getting to the floor was a serious accomplishment and I’m so grateful for Senator DiSanto (and especially his legislative director who has become a friend) and his determination.
HB1081 and HB730 never got this far. And to have it pass UNANIMOUSLY was an amazing, beautiful thing. I cried tears of joy as I watched the proceedings.
Just weeks ago I was almost certain that SB983 was dead because of VERY late input from the Department of Health (which conveniently waited EIGHT WEEKS after a stakeholder meeting to provide their input, and waited until five minutes after the bill passed out of committee to share their concerns with us directly).
I felt betrayed to some extent by their delay because I’ve been working tirelessly for years for THEM. This bill doesn’t benefit me – I’m done having children. It benefits people I will never meet. This bill benefits the Department of Health. Their lack of response and their incredible delays caused a great deal of stress and tears in my life and could have killed SB983, but thankfully we’re moving forward in spite of them, not because of them.
The delays by DOH cost us eight weeks of precious time but we were able to get it through the Senate. And now we’re up against time limitations like never before. The House has just THREE session days left (unless they add more). Three. It takes three full days to move a bill to a final vote.
Today the bill was referred to the Human Services committee (where I have unanimous support for HB730 so I’m optimistic about them supporting SB983) thanks to more connections made over the years. I spoke with the Chairman of the committee personally yesterday and asked him to schedule a committee meeting for next week so that we have any chance of having it go to the floor the week of October 19th.
Everyone and everything seems to be in position for this to happen, finally. God has allowed me to make amazing connections over the past four years with people who really matter when it comes to getting a bill on the floor. I’m so grateful for this bipartisan “team” I’ve assembled as I do everything I can to finish this work in 2020. I have learned so much from these patient friends and I know that our meeting wasn’t chance.
I’ve been told now on multiple occasions that I’m doing better work than many paid lobbyists; I am grateful for those kind words, but I also acknowledge that as a mother who has lost a child, and not a paid lobbyist, I can get away with FAR more. I can say things no one can refute (such as when I said this at a hearing in 2017: “I’d rather pay for Newborn Screening than for a funeral, because that’s what I had to do.”) and they wouldn’t tell me that what I’m saying doesn’t matter. I can ask questions and learn the process and not be expected to already know how it works. And I’m enjoying it.
So that’s where we stand. We’re a committee meeting and three considerations on the floor away from the governor’s desk. Hannah’s Law was signed SIX YEARS ago this month, so to have Krabbe become part of the mandatory screenings this month would be (long overdue) so wonderful.
Please pray with us as we press onward.