Health minister Mark Butler says he remains "absolutely committed" to ending the newborn screening lottery and implementing "world’s best practice" but the opposition has accused him of breaking an election promise.
The minister responded to questions from BioPharmaDispatch after the revelation health department officials have advised patient organisations that the Medical Services Advisory Committee (MSAC) and states and territories will remain the 'gatekeepers' to the inclusion of new diseases to newborn screening programs.
On 6 April last year, in the lead-up to the May federal election, Mr Butler issued a media release announcing Labor’s plan to expand Australia’s newborn screening programs.
"Labor will put an end to this testing lottery by introducing a universal screening program," he said, referring to the inconsistency in programs currently administered by the states and territories.
The inconsistency means newborns are screened for certain diseases based on their location.
"Labor will invest $38.4 million to deliver a world’s best practice screening program for all of Australia, increasing the number of conditions screened to 80. Our approach is in line with world’s best practice," said Mr Butler in a media release.
In an Instagram post, he said, "Every parent deserves to know their child will get the best medical care from the moment they're born. But the current health system across Australia is a patchwork, and only tests for 25 conditions.
"That's why Labor will expand Australia's Newborn Screening Programs to test for 80 conditions - making it world-class. With something as simple as a heel prick, our babies can get the care they need.
"It's good for babies, dads, mums and the whole community."
The post, which included a photo of Mr Butler with a newborn baby, received over 100 likes and multiple positive comments.
"Our first job is to ensure that states have a nationally consistent approach to screening and following that, increase the number of conditions screened across each state and territory," said Mr Butler yesterday in response to questions.
His response made no reference to the previously stated commitment of screening for 80 diseases.
"We are a significant step closer to this goal. I have in the past days offered a formal funding arrangement to states and territories to directly fund their efforts to achieve national consistency and increase conditions screened across NBS programs.
"This recognises the important delivery role states and territories play in NBS programs, and is the first time the Australian Government has directly funded states and territories to support these important programs.
"We are determined to get this right.
"We want parents to be confident that no matter which hospital their child is born, their baby will be appropriately and consistently screened for rare conditions.
"We are committed to delivering an ongoing process to identify and assess conditions, informed by consultation, that is timely and fit-for-purpose.
"Conditions will be identified through a systematic and open process, reviewing literature, international programs, emerging technologies and treatment; and inviting all Australians to identify conditions. This means families can identify a condition, but do not bear the unnecessary burden of carrying forward a nomination process."
Mr Butler said the combination of the Medical Services Advisory Committee (MSAC) and state and territory programs is his chosen vehicle to support the expansion of the NBS program.
"Once there is a test in place we need to make sure there is a pathway forward for treatment for families and their newborns.
"This is really important as we look to ensure newborn bloodspot screening’s world status into the future," he added.
The current process for including a disease, which is also based on MSAC and jurisdictional decisions, has resulted in virtually no progress on improving Australia's newborn screening programs.
Patients will hope that MSAC adopts a more humanistic approach to its evaluation of diseases and that the jurisdictions are more likely to quickly progress any recommendations based on federal government funding.
Shadow health minister Senator Anne Ruston said, “This is another broken promise from the Albanese Labor Government, which will sadly impact expecting families and newborn babies.
"Labor was happy to make headline promises just to get elected, and now they are in government they are proving time and time again that they are all talk and no action.
"Minister Butler needs to start standing up to both Jim Chalmers and the bureaucracy and actually deliver on what he promised the Australian people.
"This adds to the already growing list of cuts and broken promises in the health portfolio under this government."
Senator Ruston added, "Now, they are disregarding a commitment that has actually been budgeted, proving no aspect of the healthcare system is safe under this Labor government."
