IDF volunteers Susan Giorgi-Branch and Linda Iredale have been among the most longstanding advocates for the IDF SCID Newborn Screening Campaign in their home state of Rhode Island. Between these two dedicated individuals, so much hard work has been put into this campaign. The duo has:
- Advocated for passage of a state law that would change the language on Newborn Screening to make it more inclusive for new conditions to be added
- Attended Newborn Screening Advisory Committee meetings to support the addition of SCID
- Contacted officials responsible for the Newborn Screening Panel including the Director of the State Health Department, the Regional Screening Lab, and the Chair of the Newborn Screening Advisory Committee
The Rhode Island IDF volunteers have been the perfect example of “staying the course,” keeping in continual contact with officials for updates and as a reminder of the continued interest in seeing this screening become a reality.
Finally, Susan and Linda have seen their hard work pay off! The Chair of the Newborn Screening Advisory Committee, Dr. James Padbury, has confirmed that Rhode Island will be moving forward with SCID screening! The Advisory Committee has voted to recommend addition of SCID to the state’s newborn screening panel, and they are committed to work with the Department of Health to determine what steps need to be taken in order to see implementation of the screening as soon as possible. When screening does begin, Rhode Island will be sending their samples to the regional lab in Massachusetts for testing. Massachusetts has been screening newborns for SCID in their own state as a pilot program since February 2009.
This is great news for the amazing and committed IDF volunteers in Rhode Island and for all of the children who will receive early diagnosis and treatment as a result of this decision.
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.