‘Makes me sick’: Parents of kids with cancer unleash of proton beam therapy funding disaster

Hundreds of sick kids may have had their chance of lifesaving treatment ripped away from them in a cruel funding disaster.

Sammy Scully and Alyssa Hann are just two of hundreds of sick kids whose chance at accessing life-changing cancer treatment may have been ripped from them.

This week The Advertiser revealed the country’s first proton beam therapy unit which was due to open in a concrete “bunker” in the Australian Bragg Centre in late 2023 faces failure.

The unit, which was set to treat around 700 patients a year, most of which would’ve been children, is at “significant risk” of failure leaving South Australian taxpayers “on the hook” for “many millions of dollars” for at least the next 15 years, as the American company tasked with delivering the technology faces financial turmoil.

And parents of children suffering cancer are furious.

Sammy Scully, who has terminal brain cancer, with his mum, Alison Harrison. Picture: Roy VanDerVegt

Sammy Scully is only eight years old and faces terminal brain cancer — diffuse intrinsic pontine glioma (DIPG)

“It makes me angry to be honest – angry and hopeless for the future kids that are walking around with a time bomb in their heads and no treatment options,” mum Alison Harrison told The Advertiser.

Ms Harrison said: “if it was a Premier, politician or Prime Minister’s child affected, the bureaucratic BS wouldn’t be as deep as it is”.

“Our kids have to go interstate or overseas for valuable treatment,” she said.

“Why not make SA the place to come for ground breaking cancer treatments? SA has some very talented researchers, their knowledge and hands are tied.”

Alyssa Hann, an Adelaide teen currently fighting for her life in ICU in Sydney after complications from a stem-cell transplant she needed for leukaemia, now may not be able to receive the proton beam therapy which destroys cancer cells with radiation without damaging healthy tissue by delivering powerful proton beams precisely where needed.

“The government has enough to fund this kind of thing, I’m sure or at least cover the rest,” her mum Kylie Hann said.

“With something as important it makes me mad. The government wastes money on stupid things instead of what matters.

“It would be the world leading proton cancer treatment, why would we not want to be a part of this?

“This would boost everything for our state. It’s time to make SA the place everyone talks about. I mean come on, this is cancer treatment.”

Alyssa Hann with her mum Kylie and dad Scott. Picture: Supplied by family

Ms Harrison, who lives in Andrews Farm, said the potential failure is “not fair”.

“We are already at the mercy of international cohorts and clinical trials just so we can get vital medication,” she said.

Ms Hann said travelling for treatment is isolating and “the hardest thing about this for both the child and parents”.

“Does being isolated cause the child’s mental health to decline and effect treatment especially during teenage years,” she said.

“It makes me nervous, it makes me feel sick.”

The new unit could’ve meant kids like Sammy wouldn’t need to travel for treatment. Picture: Supplied by family

Alyssa Hann, 16, is fighting for her life in ICU in Sydney after undergoing a stem cell transplant for leukaemia. Picture: Supplied by family

The new unit would’ve meant patients didn’t need to travel overseas at huge costs for lifesaving treatment.

The first patients were expected within 18 months of the buildings completion which was scheduled for late 2023.

Half the patients were meant to be children, paying around $40,000 for treatment with the potential for subsidies, compared to $250,000 in the US.

“This significant development will put SA on the map as a pioneer in world-leading, lifesaving proton therapy cancer treatment,” the Premier at the time the unit was announced, Steven Marshall, said.

“South Australians, and people throughout the nation, will no longer need to go overseas to get the care they need.”

The proposed Australian Bragg Centre proton therapy unit spearheaded by the South Australian Health and Medical Research Institute. Picture: supplied by SAHMRI.

The proposed Australian Bragg Centre proton therapy unit spearheaded by the South Australian Health and Medical Research Institute. Picture: supplied by SAHMRI.

The proposed Australian Bragg Centre proton therapy unit spearheaded by the South Australian Health and Medical Research Institute. Picture: supplied by SAHMRI.

The American firm hired to deliver the cutting-edge technology has asked for “more time” and a “significant” bailout, blaming Covid-19 and Ukraine war for failing to meet project milestones.

SAHMRI, acting on state Treasury advice, has refused to pay more money to the Boston-based ProTom International, which was paid almost $68m in taxpayer funds for its pioneering equipment.

It is understood a “significant proportion” of the contracted sum has already been paid to PTI, believed to be almost $45m.

Speaking ahead of a formal statement to state parliament on Wednesday – in response to The Advertiser’s inquiries – Treasurer Steven Mullighan declined to say how much public funds were at stake or what options were being explored.

Originally published as ‘Makes me sick’: Parents of kids with cancer unleash of proton beam therapy funding disaster