Today I (Lesa) had a meeting with the staff from Representative Angel Cruz’s office regarding the legislation they are preparing to introduce to reform the way Newborn Screening is done in Pennsylvania.
The meeting was productive and we are ready to see this legislation all the way to the governor’s desk so that lives of children will be saved in our state.
This legislation is vital because, without it, Hannah’s Law (Act 148 of 2014) will be rendered useless due to the way that Screenings are done and the way that the process works in Pennsylvania. This bill would limit the Department of Health’s ability to make changes to the mandatory Newborn Screening program, like they did with Hannah’s Law (chose only ONE of the six mandated diseases to add to the mandatory testing list).
You can read the co-sponsorship memo and the attached draft of the legislation here.
If you live in PA and would like to encourage your legislator to co-sponsor this legislation, you can go to this website to find your legislator.
Underneath the photo of your legislators you will find an email icon through which you can contact them.
Here is a sample letter I wrote that you can freely customize to fit your family:
I am writing in regards to upcoming legislation from Representative Angel Cruz regarding Newborn Screening in hopes that you might be willing to co-sponsor and support this important legislation.
The bill does not yet have a number but the co-sponsorship memo was dated March 21,2016.
The way that Newborn Screening is conducted in Pennsylvania must be reformed. We are currently last in the country (by a wide margin) in the number of tests that we perform on babies, and these tests can save lives because early detection for many diseases is the difference between life and death.
This legislation is important to our family because ___________________________…
Please consider helping save the lives of children in Pennsylvania by supporting this important legislation.
If that doesn’t fire you up, check out the map below. Pennsylvania is LAST in the nation by a wide margin in the number of diseases for which testing is mandatory.
We are hoping to see another bill introduced in the near future to reform NBS even further, but we have to take things one step at a time. We will need your support every step of the way and are so thankful for all you have already done.