Page 74 - Week 01 - Tuesday, 11 February 2020
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It is also useful to know about the finances. I am advised by Dr Wong of the Westmead Children’s Hospital that international cost-effectiveness studies have shown that the cost of treating children once they have symptoms far outweighs the cost of giving the transplant to babies before they have symptoms. Testing would cost around $10 per child. Newborn screening would be the perfect solution to the problem.
I thank all of the community members, and in particular Jenny Tyrell, who is here today in the gallery, for their ongoing work over many years to bring attention to this disease, support work for a cure, and for raising this issue through a petition as one way to potentially bring the screening and the cure to the babies and families who need it to survive. The doctors, including Dr Wong, have worked so hard on this. I seek leave to table the documents from which I have quoted.
Leave granted.
MS LE COUTEUR: I present the following papers:
Newborn Screening for Severe Combined Immune Deficiency Australia—
Position Statement, prepared by the Immune Deficiencies Foundation.
Javeria—Impact of disease.
Question resolved in the affirmative.
Papers
The Clerk presented the following papers:
ACT Ambulance Service—SPIRE Project consultation documents—
Letter to the Clerk from the Head of Service, ACT Government, dated 11 December 2019.
Schedule of returned documents.
Copy of—
Email correspondence regarding planning for the SPIRE centre and ambulance movements, dated 5 and 7 March 2019.
Meeting invite regarding SPIRE planning and ACTAS movements.
Email regarding NSW ambulance contacts, dated 21 November 2019.
Email correspondence regarding ACTAS presence at Woden Valley Council, dated 5 November 2019.
Madam Speaker presented the following papers:
Auditor-General Act, pursuant to subsection 17(5)—Auditor-General’s Reports Nos—
9/2019—2018-19 Financial Audits—Overview, dated 29 November 2019.
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