Tragic tot’s mum says PM hasn’t delivered on lifesaving promise after ‘using Nate’s story to buy votes’

Babies are not being screened for dozens of deadly diseases three years after authorities promised to do so.

Jenna Primmer with her son Nate, who was diagnosed at seven months with Pompe disease.

Babies are not being screened for 80 rare and life-threatening conditions three years after Labor promised to do so – with the mum of a deceased baby saying they’ve failed to deliver the commitment in her son’s name.

Jenna Primmer, whose two-year-old son Nate died from Pompe disease, is among critics who have accused the government of failing to prioritise the vital issue.

But Health Minister Mark Butler rejected accusations Labor had broken its election pledge, saying the government “has delivered on our commitment”.

In 2022, Prime Minister Anthony Albanese promised to expand the newborn screening program to test for 80 rare conditions during an event at the Midland public hospital in Perth – where he again posed with a baby last week.

Anthony Albanese shows his baby-wrangling skills with newborn Amber at St John of God Midland Hospital in Perth on March 31. Picture: Jason Edwards/NewsWire

The number of target conditions being screened across all jurisdictions has since risen from 27 to 32, with a further five conditions agreed to by authorities.

Sixteen non-target conditions may be incidentally detected as a result of those screenings, which can be as simple as a heel prick, while 17 diseases are under consideration.

This means a total of 70 conditions are either being screened, agreed and under implementation, or being considered – with a further six not recommended for inclusion.

But Pompe disease is only due to be considered at an independent Medical Services Advisory Committee meeting this month.

In a 2022 tweet, Mr Butler reinforced Labor’s pledge to fix the issue saying “stories like Nate’s shouldn’t happen”.

But Ms Primmer said she felt “like the photos and Nate’s story were used to buy votes, so to speak, with no follow-up action”.

“We’re disappointed that promises were made on Nate’s name and they were not delivered,” she said. “Don’t make the promises if you’re not going to follow through. Especially not with deceased kids.”

Nate Primmer passed away when he was a toddler.

Now his mum Jenna says the Albanese government made promises in Nate’s name “that were not delivered”.

Ms Primmer said she was “excited and hopeful” that the rare condition would be recommended for screening, as two or three children were dying from the disease every year because they were not receiving an early diagnosis.

Opposition health spokeswoman Anne Ruston said it was “another disappointing broken promise”.

“The Prime Minister held up a baby with Pompe disease in front of the cameras and has since failed to ensure this devastating disease is being screened through the programs,” Senator Ruston said.

But Health Minister Mark Butler said: “The Albanese Government has delivered on our commitment to end the postcode lottery, so all newborns can access world’s best screening no matter where they live.”

“For the first time in 60 years, there is an agreed national list of current newborn bloodspot screening conditions, specific funding to achieve consistency across Australia, and a streamlined pathway to consider more conditions for screening,” he said.

The government has invested $107.3m in the national program – which screens over 300,000 newborns or 99 per cent of babies born.

Better Access Australia chair Felicity McNeill said states were also to blame for the go-slow but “if you don’t have that strong leadership federally then nothing happens”.

“We don’t want to make babies a political point-scoring exercise, we want bipartisan support to fix this,” she said.

Originally published as Tragic tot’s mum says PM hasn’t delivered on lifesaving promise after ‘using Nate’s story to buy votes’