SCID Newborn Screening

SCID (Severe Combined Immunodeficiency) Newborn Screening now Australia-wide.

Severe Combined Immunodeficiency (SCID) is a life-threatening genetic condition in which affected babies are unable to fight even simple infections. SCID is often referred to as the ‘bubble boy disease’ highlighting the threat of exposure to germs and is considered an immunological emergency. Without appropriate timely treatment, most children die before the age of 2 years. If diagnosed and treated early, SCID can be entirely curable. Early diagnosis is now possible with universal SCID Newborn Screening (NBS).

IDFA has been working for many years with patients, families, carers and health professionals to advocate for the implementation of SCID Newborn Screening. There have been many individuals and organisations involved in the campaign including Rare Voices Australia and AusPIPS, strongly advocating for universal SCID newborn screening and this is now a reality for all Australian families. From May 2024 all babies born in any Australian state or territory will be screened for SCID as part of the standard Newborn Screening tests carried out at birth

IDFA would like to thank all patient advocates, families, carers, state and territory ministers and organisational partners who have supported the campaign and shared our carer stories. Their stories highlight the power of patient voices coming together to make a significant difference for future generations of people living with immunodeficiencies.

See below a range of stories of babies affected by SCID from IDFA members, families and carer advocates who have made a significant difference to achieving nation-wide SCID NBS.