Page 2050 - Week 07 - Thursday, 20 August 2020
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Specifically, as signatories to petitions No 21 of 19 and No 1 of 20, 710 residents of the ACT have sought to:
… draw to the attention of the Assembly: the infant mortality of Severe Combined Immune Deficiency [SCID]. SCID is a life-threatening condition that without early diagnosis and treatment results in death within the first few months of life.
… [The] petitioners, therefore, request the Assembly to call on the Government to: introduce the inclusion of screening for [SCID] … into the existing Newborn Screening (Guthrie test) to reduce preventable infant mortality. Inclusion in the Newborn Screening test would enable early detection, diagnosis and lifesaving treatment for these babies. This is already standard practice in New Zealand, most US states and other OECD countries.
According to the Royal Australian College of Physicians, newborn screening:
… is an important child health issue, since early identification of infants who are affected by certain congenital disorders and timely intervention significantly reduce morbidity, mortality and associated disabilities. Newborn screening can be used to identify specific health conditions which, untreated, lead to intellectual disability, other significant morbidity or child death.
In responding to the petitions, pursuant to standing order 100, on 12 May 2020 the Minister for Health stated:
I am advised that the Immune Deficiencies Foundation of Australia (IDFA) is advocating strongly for SCID to be included in the Australian Newborn Bloodspot Screening program to support earliest diagnosis and treatment and has started online e-petitions to Australian State and Territory governments, including the ACT.
Decisions about tests for inclusion or removal in national newborn bloodspot screening are overseen by COAG Health Council on advice from the Standing Committee on Screening. ACT newborns are currently screened for 25 medical disorders. The condition SCID is not currently part of the ongoing newborn bloodspot screening program. However, I am pleased to advise that NSW is conducting a pilot SCID study and, as part of that study, ACT newborns are receiving this additional screening.
I am advised that the Standing Committee on Screening is currently reviewing SCID for inclusion in the Australia Newborn Bloodspot Screening program. A recommended ACT position on ongoing screening for SCID will be provided to me for consideration once the advice of the Standing Committee on Screening recommendation is known and the results of the NSW SCID pilot study are available.
The committee met with the Minister for Health and directorate officials on 23 June 2020 to discuss the particulars of the petitions and government response. The committee thanks the minister and officials for making time to meet with it and for providing further information on notice. This information assisted the committee in its
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