There is something uniquely indefensible about a politician using the tragic suffering of a family and the death of a child for political gain and then abandoning them when a technical advisory committee and its bureaucracy repudiate their basic request.
Sorry to say, but this is precisely what Health Minister Mark Butler is doing.
During the 2022 election campaign, Mr Butler used the short, painful life of baby Nate to promote Labor's commitment to reform Australia's Newborn Bloodspot Screening programs. Highlighting Nate's brief life, and our health system's failure to diagnose him with Pompe disease, Mr Butler said 'never again'.
The minister has now refused to answer questions about an outcome from one of his key advisory committees that condemns more Australian babies, infants, adolescents and adults to Nate's fate. That family understandably feels used.
Maybe Mr Butler is embarrassed?
In this case, his never again refrain appears to mean until next time.
BioPharmaDispatch submitted questions to Mr Butler seeking his response to the advice of the Medical Services Advisory Committee (MSAC) not to support the addition of Pompe disease to Australia's Newborn Bloodspot Screening Programs.
The questions sought Mr Butler's response to the outcome, specifically, any concern he might have given its dismissal of patient and family concerns, the risk to newborns and other Australians, including death, and whether he planned to accept the advice. Would he follow the lead of his predecessor, Greg Hunt, who set aside MSAC advice on adding Spinal Muscular Atrophy to newborn screening? Had Mr Hunt not set aside that advice, which was unusually cruel, Australian newborns would not currently be screened for the degenerative and manageable condition.
Mr Butler referred the questions on Pompe disease to his department. Their responses are exactly what you would expect and are not worthy of publication.
It is understandable if Mr Butler is annoyed with the outcome, and silence might be considered the best option. Who would want to defend this outcome? The non-response suggests the minister understands how poor this decision is. Of course, there are literally hundreds of responses that could have revealed a human response to the despair of these families, who reasonably took the minister at his word in 2022.
He might start by speaking to patients and families about their recent interaction with MSAC members.
It is not too late to right this wrong.
It is essential to remember that patients and their families supported the addition of Pompe to newborn screening due to the overwhelming challenge of diagnosis. The MSAC outcome suggests they did not even consider the diagnosis challenge. Babies die, and late-onset Pompe patients suffer terribly because of the challenge they face in securing a diagnosis. Babies will continue to die, and late-onset Pompe patients will continue to suffer unless Mr Butler acts.
Having used their grief to his advantage, the minister is now abandoning those families. He must know it is profoundly wrong. His refusal to respond suggests he might.
This committee of unrepresentative people in positions of authority dare to lecture patients about the relative advantage of ignorance over knowledge. They are denying patients and their families agency, surely knowing it will lead to preventable deaths and suffering, because of obscurantist, uncivilised dogma detached from reality.
MSAC's excuse, which is that it would lead to overmedicalisation and parental hypervigilance, is utterly dim-witted.
What does parental hypervigilance mean in 2025, where governments legally require school children to wear hats and sunscreen, on the off-chance they might develop skin cancer at some point down the track, they wear high-vis on school excursions, schools and teachers control their snacks and lunch boxes, and people aged under 16 are banned from social media? That is, before we discuss the COVID pandemic, when governments locked people in their homes and even banned golf and fishing.
We live in a world of government-led statutory parental hypervigilance, yet, when it comes to a dreadful and life-threatening degenerative genetic disease like Pompe, apparently, it is best not to worry too much.
During his tenure, Mr Butler has imposed his authority on Australia's institutional health technology assessment framework to secure better outcomes on women's health and even ensure the timely consideration of deferred submissions. How are these more worthy than newborn screening for degenerative and life threatening conditions?
Minister, in 2022 you said never again. You were right then and it remains the right thing in 2025.
