On October 14, Delaware became the third state this month to have the state Advisory Committee vote to recommend the addition of SCID to the state’s newborn screening panel (along with Minnesota and Michigan).
IDF volunteers Donna Sawyer and Judy Kozulak were at the root of the resounding success in Delaware. Donna and Judy put a huge amount of effort into this campaign. Just a sampling of their activity over the past several months highlights the dedication of these two volunteers:
- Arranged with the local media to have an article written about Donna’s story and the need for newborn screening (Click here to read)
- Initiated regular communication with Department of Health to share information
- Conducted an email campaign to the Director of the Division of Public Health advocating for inclusion of SCID
- Enlisted the help of an expert immunologist in the area to give testimony on the importance of screening and the serious consequences of late detection
The Advisory Committee was incredibly moved by Donna’s story as a mother of two children who have been diagnosed with SCID. Her oldest, a daughter, was not diagnosed until becoming very ill while her youngest, a son, was diagnosed at birth after screening for SCID. Their lives could not be more different as a result. Austin is a straight-A student who is active in the Boy Scouts and plays baseball. Alex, on the other hand, has had to go through years of speech, physical, and occupational therapies and takes special education classes in school. Some individuals at the meeting were so touched when Donna told her story that tissues had to be brought out to dry their eyes.
Ultimately, it was a combination of this poignant experience and the public response received via email that inspired the committee to vote to recommend SCID newborn screening. The panel made the remark that they wished that they had this type of interest in every policy they wanted to implement.
The Delaware State Lab reported that they hope to have pilot testing up and running by early 2011.
If you live in the Newark, DE area, consider joining us for a one-day IDF Patient Education Meeting presented for individuals, families and health professionals. IDF’s Local Patient Programs offer an introduction to IDF, and feature local immunologists and allergists addressing the treatment and management of primary immunodeficiency diseases. These meetings are the perfect occasion for patients and families to meet and share ideas.
|Please RSVP by November 10, 2010 to IDF Volunteer Judy Kozulak.|
|November 13th, 2010 10:00 AM through 01:00 PM|
|Christiana Hospital -- Room 1000
4755 Ogletown-Stanton Rd
Newark, DE 19718
IDF Patient Education Meetings are sponsored by 2010 IDF Core Service Sponsors: Baxter Healthcare, Biotest Pharmaceuticals Corporation, CSL Behring, Grifols, lgG America / ASD Healthcare, Octapharma and Talecris Biotherapeutics and IDF Sustaining Contributor Walgreens - IG Therapy Program.
Check out the IDF Calendar of Events to find a Patient Meeting in your area!
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.