Rare Voices Australia (RVA) welcomes the Queensland Government’s announcement that the state will expand its newborn screening program to include Spinal Muscular Atrophy (SMA) and Severe Combined Immunodeficiency (SCID).
The Hon Yvette D’Ath MP, Queensland’s Minister for Health and Ambulance Services, said the new testing capabilities would begin operation in May 2023 and be available for use on all heel prick samples soon after. In her Media Statement, the Minister added:
“… The Queensland Government is investing $1.6 million to expand the screening program and a further $1.25 million each year to maintain it.
“This funding will be used to purchase new genetic testing equipment, upskill pathology staff and test tens of thousands of Queensland babies born each year for SMA and SCID.”
Read the full Media Statement.
This announcement follows the Australian Labor Party’s (ALP) $38.4 million commitment to newborn bloodspot screening (NBS) ahead of the Federal Election. RVA is encouraged by the discussions we’ve had with the ALP since they formed government regarding this investment, and the challenges and gaps with NBS.
RVA thanks the Queensland Government for their ongoing engagement with RVA regarding this issue. NBS is an important program that supports the earliest possible diagnosis of these rare diseases. As outlined in the National Strategic Action Plan for Rare Diseases, early diagnosis is critical for better outcomes as it enables the best immediate treatment and care.
Congratulations to RVA Partners, Spinal Muscular Atrophy Australia and Immune Deficiencies Foundation Australia, on their successful advocacy on behalf of their communities.
RVA will continue to work with the Commonwealth and state governments with a focus on achieving a nationally equitable, consistent and sustainable NBS Program.