Unfortunately, where there is progress in many states toward implementation of SCID screening, there is also backtracking. On May 26, Florida Governor Rick Scott vetoed funding in the state budget for the implementation of SCID newborn screening in Florida despite the recommendation from the state’s Newborn Screening Advisory Committee that SCID be added to the newborn screening panel. IDF along with volunteer and founder of SCID, Angels for Life Foundation Heather Smith will be attempting to rectify this situation through budget amendment next month.
Heather wrote the following letter to encourage individuals in Florida to protest the decision made by Governor Scott:
Dear Friends and Family in Florida,I reached out to you last week asking for your help contacting Governor Rick Scott regarding his recent veto of SCID newborn screening. Thank you to the 248 individuals who responded by sending the prewritten email to our Governor. Although 248 responses is good, in order to really get his attention, we need to triple that number and we need to do it NOW!On February 10, 2011 precious Annabelle Joy passed away from SCID at All Children’s Hospital in St. Petersburg, Fl. Because she was born in Florida, and Florida currently does not screen for SCID, she was not diagnosed with the disease until she was so severely ill that treatment wasn’t an option. This year alone there will be at least eight babies in Florida who pass away from this disease. Annabelle is the first one to succumb to this treatable disease, please don’t let your friends, neighbors, relatives, or God forbid, your own son or daughter be the next victim. Currently, Florida tests ALL newborns at birth for 35 different conditions. Of these 35 conditions, SCID is the only condition that is treatable, and can even be curable in some instances! Every time a baby is born in Florida they are screened for all conditions currently on the screening panel. Their insurance company or Medicaid is charged $15 and the money collected is placed into a “trust fund.” We are now asking for the spending authority to use some of this money that has already been collected, to implement the SCID newborn screening test! This program is a “cost neutral or budget neutral” program and will not cost Floridians a dime; however, it will SAVE the LIVES of at least seven more babies this year alone. Unfortunately, SCID newborn screening is too late for Annabelle Joy but let’s not make it too late for the other babies who are yet to be born in Florida.If you, or members of your family, haven’t already sent the prewritten email to Governor Rick Scott, please click here http://www.primaryimmune.org/action_alert.htm and send one now! It’s time for YOU to make a difference!!!
Co-founder SCID, Angels for Life Foundation
“Help make newborn screening for SCID universal” www.SCIDangelsforlife.com
You can help by showing your anger with Governor Scott’s decision to veto this essential funding by sending a letter to the Governor through the IDF Action Alert. http://www.primaryimmune.org/action_alert.htm
Please COMMENT below to tell us about the activities you are taking to make SCID newborn screening a reality in your own state! Comment or contact IDF through the CONTACT button at the top of the page to talk with someone about what is already happening in your state and how you can get involved. To learn more about the SCID Newborn Screening Campaign, check out the website! http://www.primaryimmune.org/advocacy_center/scid/scid_newborn_screening_initiative.asp