Doctor, please take my baby’s blood!
The IDF encourages Louisiana state officials to sign into law routine screenings of newborns for SCID, or Severe Combined Immune Deficiency.
The IDF’s ultimate goal is to have every state routinely screen for SCID among newborns. The IDF has worked closely and successfully with KOLS, organizations and government departments for the addition of SCID to the core conditions on the national Recommended Uniform Screening Panel.
Set forth by unanimous vote of the Advisory Committee on Heritable Disorders in Newborns and Children back in 2010, the panel today is made up of 32 core conditions and 25 secondary conditions. It is also referred to the “heel stick test” and is the best chance babies have at living healthy lives.
The full Recommended Uniform Screening Panel Core Conditions as of March 2015 can be seen here and an educational video developed by Save babies Through Screening Foundation can be seen here.
The map (left) provided by Baton Rouge breaking news (WAFB) highlights the current status of routine screening implementation. While 12 states and territories are planning to begin screening in 2015, as of June 18th 8 states are not screening for SCID. Montana, Nevada, Louisiana, Kansas, Arizona, Alabama, Indiana, and Vermont.
So, why has it taken so long for SCID testing to get on the map?
Because SCID is so rare. The National Human Genome Research Institute reports that 40-100 babies are actually diagnosed with SCID annually in the United States, but there is no official record of this estimation because there is no way to estimate the number of babies, children and young adults that are not diagnosed and die of SCID- related infections.
LA was actually one of the first states to launch a pilot screening program back in 2010 but as reported by scid.net, the pilot was discontinued due to lack of funding. State pilot programs are most often funded by grants, philanthropy efforts and development funds, and unfortunately sometimes the funds run out.
Newborn screening is recognized nationally as a preventative health measure. It has proven to be incredibly cost effective for both patients and state governments when lifetime diagnostic and treatment costs are summed up. In the state of LA, SCID treatment costs per patient are approximately 1-3 million dollars. For patients with insurance, medicaid or CHIP (Children’s Health Insurance Program) coverage, the state ends up covering almost half of that cost, but for those without coverage or lack of diagnosis, the sad reality is: an infection kills them. Further estimation averages LA an annual cost of $400k to screen all newborns – somewhere around 7$ a panel!
So, routine screening in LA would actually save the state money? Seems like a no-brainer right? All it takes is a few drops of blood, and almost all US born babies can be afforded not only the chance to live, but the chance to live a healthy life because SCID is treatable and manageable if detected early enough.
#TestforSCID
Click here to access the IDF’s Screening Campaign homepage where you can find facts and statistics, pamphlets and toolkits, articles, publications and the most recent news about the campaign to help you learn more and join the effort to make SCID newborn screening universal.
