Legislative Assembly for the ACT: 2020 Week 04 Hansard (Thursday, 21 May 2020) . . Page.. 1039 ..
Thursday, 21 May 2020
The Assembly met at 10 am.
MADAM SPEAKER (Ms J Burch) took the chair, made a formal recognition that the Assembly was meeting on the lands of the traditional custodians, and asked members to stand in silence and pray or reflect on their responsibilities to the people of the Australian Capital Territory.
The following response to petitions has been lodged:
Newborn screening—petitions 21-19 and 1-20
By Ms Stephen-Smith, Minister for Health, dated 12 May 2020, in response to petitions lodged by Ms Le Couteur on 11 February 2020 concerning newborn screening for severe combined immune deficiency.
The response read as follows:
Dear Mr Duncan
Thank you for your letter of 11 February 2020 regarding petitions No 21-19 and 1-20 in relation to newborn bloodspot screening for Severe Combined Immune Deficiency (SCID), tabled in the Legislative Assembly by Ms Caroline Le Couteur MLA on 11 February 2020. In accordance with Standing Order 100, my response to these petitions follows.
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