As we continue to spread awareness for Primary Immunodeficiency and newborn screening for SCID across the world, we are thrilled to share the news that earlier this year, the Australian government recommended adding SCID to State and Territory newborn screening programs.
This announcement is a perfect example of using your voice to Do Something by speaking up and encouraging action. Joh Kelly lost her 5-month-old son Hunter to SCID because newborn screening for SCID wasn’t included in the program at the time. Like so many other parents, Joh could not let her son’s life be in vain, so she pioneered an application for SCID to be added to the newborn screening panel in Australia.
Joh’s application was supported by AusPIPS Inc. and the Jeffrey Modell Center for Primary Immunodeficiencies in Melbourne. This is why the JMCN is so critical for patients living with PI across the globe: the network offers patients direct access to expert immunologists and allows us to confirm valuable genetic diagnostic information for each patient. The JMCN has enabled the Foundation to pursue its goals, raise awareness, and in turn, reduce mortality and morbidity while improving quality of life for as many patients as possible, and even saving a few.
Early diagnosis is key to providing life-saving treatments to children born with SCID, and this addition to the screening program will save numerous babies born in Australia each year. We won’t stop until every country worldwide is participating in newborn screening for SCID!