January 12, 2009

Texas CF Newborn Screening Funds

Those of you who have read our entire story know that Samantha was diagnosed with Cystic Fibrosis through a newborn screen. However, at the time this was not a state mandate. Samantha was born in Dec '05, and the California universal newborn screen was instated in July of '07. We feel so blessed because the CF doctor at our hospital (Sam's current Dr) was on the board pushing for universal newborn screening, and he was requiring it for every child born at our hospital.

When she was born there were only about 13 states that had implemented universal newborn screening, but in just these few short years almost every state has come aboard. There are 3 states that still need to implement it, but I want to focus on my home state of Texas.

According to the CF Foundation website, the screening has been approved, but the program lacks funding. On Tuesday, January 13 (which is tomorrow), the 81st Texas Legislature will convene to determine funding for all kinds of health related issues. Due to the needs of so many, Cystic Fibrosis newborn screening may get pushed to the side for the THIRD time. It is too late for a letter campaign, but if you live in Texas, you can contact your senator or representative by phone. Here is an example of what to say.

Don't know who to call?

Find your state senator here.

Find your state representative here.

If any of you living in TX call one of your representatives, please tell us how it goes. Was it easy? Was it a challenge? Did you have to hang up for being on hold so long?

1 comment:

Scott said...

Very nice blog Alicia! Our youngest daughter, Zoe, is four and has cf. We did the same thing while in Florida. I personall wrote, emailed, faxed, and called the entire Senate and House to advocate for it. Well done... keep up the great work!