Introduction by Croakey: Members of the Consumer Advisory Group of the Australian Bragg Centre for Proton Therapy and Research in Adelaide are urging federal and state politicians for clarity and action on the future of the facility following a setback on its establishment last year.
The ongoing uncertainty around the future of the facility is causing significant anxiety for members of the Group, Marie McInerney reports for Croakey Conference News Service below.
“Families should not have to endure the heartache of delayed care when a world-class proton therapy facility is within reach,” they wrote in letters to the Prime Minster and South Australian Premier Peter Malinauskas. “The lives of thousands of Australians – including vulnerable children – are on the line,” they said.
Marie McInerney writes:
Adelaide public servant and mother of two Billie Tuckerman describes last year’s collapse in plans to open a cutting-edge proton therapy centre in her home town for Australian cancer patients as “absolutely heart-breaking”.
Following the diagnosis of her seven-month-old baby Evelyn with Ewing sarcoma – a rare and aggressive form of bone cancer – she had to travel to Florida in the United States in 2022 for her daughter to undergo proton therapy – therapy which is unavailable in Australia.
Funded through the Federal Government’s Medical Treatment Overseas Program (MTOP), Evelyn underwent two months of proton therapy treatment in the US – precise, highly targeted radiotherapy that applies lower doses of radiation to healthy tissue than conventional photon radiation therapy.
The treatment saved her life, but travelling away for it was a gruelling and daunting experience for the family, Tuckerman told a recent medical radiation sciences conference in Adelaide.
“Although we will always be grateful for the treatment she received, it was by far the hardest time of our lives,” she later told Croakey.
To know that Australia has the opportunity to provide this treatment “on our own soil”, yet there are delays to families in vital need is distressing, she said.
“It makes me feel sick to my stomach thinking of the other families who still have to go overseas to get this treatment,” she said, acknowledging that those who are able to do that are still the lucky ones compared to those who miss out on the treatment completely.
Ongoing uncertainty
Tuckerman is a member of the Consumer Advisory Group of the $500 million Australian Bragg Centre for Proton Therapy and Research in Adelaide, a wholly-owned subsidiary of the South Australian Health and Medical Research Institute (SAHMRI).
The Bragg Centre’s bespoke ‘bunker’ was designed to provide the first proton therapy facility in the southern hemisphere, expected to commence operations in 2024-25, and to treat up to 750 patients a year from across Australia by 2031.
It was to represent a step change in cancer care in Australia, and was of significant interest to medical radiation sciences professionals.
As previously reported at Croakey, the Australian Society of Medical Imaging and Radiation Therapy (ASMIRT) and the New Zealand Institute of Medical Radiation Technology (NZIMRT) opted to stage their trans-Tasman conference in March on Kaurna Country, Adelaide, so delegates could inspect the centre and focus discussions on the technology.
However, late last year, SAHMRI announced it had been forced to terminate its agreement with United States firm ProTom International (PTI) for the supply of therapy equipment.
Continuing uncertainty around the future of the facility has caused “significant anxiety” within the cancer community in Australia, and placed “an unbearable burden” on patients who may be missing timely or optimal care, say Tuckerman and other members of the Consumer Advisory Group.
They have written jointly and individually to Prime Minister Anthony Albanese and South Australian Premier Peter Malinauskas, copying in state and federal health ministers and key members of the Opposition in both jurisdictions, urging action.
“Families should not have to endure the heartache of delayed care when a world-class proton therapy facility is within reach,” they wrote, calling for “decisive leadership and action at the highest level”.
“The lives of thousands of Australians – including vulnerable children – are on the line,” they said.
Yet, despite the looming 3 May federal election, they have received only indicative or perfunctory responses as well as “silence on multiple fronts”, says a disappointed Tuckerman.
Croakey has also struggled to get any firm indication or response from both governments on the issue, although Federal Health Minister Mark Butler told journalists earlier this year that he wanted to see the therapy available in Australia “as quickly as possible and I’m working with the South Australian Government to try to make sure that happens”.
A quantum leap
The Consumer Advisory Group members say proton therapy represents “a quantum leap” in cancer treatment, particularly for tumours located in sensitive areas and paediatric patients.
Unlike traditional radiation, proton therapy allows for highly precise targeting of cancerous cells while minimising damage to surrounding healthy tissue, drastically reducing side effects.
This is especially critical for young and vulnerable patients, whose bodies are more susceptible to the long-term effects of conventional radiation therapy.
The Consumer Advisory Group members, who have lived experience of cancer themselves or in family members, said that having a facility in Australia would also solidify its position as a global leader in healthcare, stimulate research and development, and retain vital healthcare spending that would otherwise flow overseas.
It would also attract patients from New Zealand and Pacific nations, “creating opportunities for Australia to become a leader in cutting-edge cancer treatment for the region”.
The group has also warned that the expertise and knowledge of world-leading specialists involved in the Bragg Centre could be lost if its future remains unclear, saying it is “both embarrassing and unacceptable” that a country known for its advanced medical care has yet to establish a proton centre.
Cancer Australia’s 2023 Strategy for Proton Beam Therapy said in 2023 that 21 countries currently had at least one operating proton therapy machine. The US has the highest number (44), followed by Japan (19) and the UK (6 including 2 in publicly-funded centres).
Cancer Australia says about seven patients per year from 2015–16 to 2019–20 have accessed the treatment overseas through the Medical Treatment Overseas Program.
“However, the annual demand for [proton beam therapy] in Australia has been estimated at 231 patients in 2021, increasing to 372 patients in 2025, 65.8 percent children and adolescent and young adults, and 34.2 percent adults,” it says.
Long-term issues
Group member Shona Edwards, an Adelaide Masters student, was just 23-years-old when she was diagnosed in 2018 with a rare meningioma wrapped around her sacrum, which caused a spinal cord injury and physical and neurological disabilities.
Because it was a rare presentation and in a complicated spot, she was “basically inoperable”, she told Croakey, with surgery having to be abandoned because she began to “bleed out”.
At her age, conventional radiotherapy held significant risks including that it could further deteriorate her spinal cord injury, damage the structural stability of her bones and potentially stop her walking and/or having children.
Even so, her earlier applications for funding to go to the US for proton therapy were knocked back, but finally she was funded through the Medical Treatment Overseas Program to have three months of treatment in Prague in the Czech Republic.
Again, while it was lifesaving treatment, it was “fraught with challenges”, coming as her health was deteriorating and exacerbated by being rejected for support under the National Disability Insurance Scheme (NDIS) and Disability Support Pension (DSP).
“I endured excruciating pain, isolation, and significant language barriers, while my mother, my only funded support person, struggled to meet my needs with limited resources and increasing mobility difficulties,” Edwards wrote in her letter to the Prime Minister and Premier.
While she’s immeasurably grateful for the support from the Prague team and the Medical Treatment Overseas Program, Edwards told Croakey it was “to be honest, the biggest psychological stress of my life, of my family’s lives”.
Proton therapy has allowed Edwards to return to university and work. Despite ongoing health issues, her tumour was stabilised and damage to the surrounding tissue has been avoided, preserving her fertility and avoiding long term risk of secondary cancers.
That’s a huge gain for her, but also a vital message for governments and other funders, she said.
“As youth cancer patients have increasingly improved survival rates and live longer lives post-cancer, we face long term consequences which impact how we live our lives and how much we access disability and other health services,” she wrote.
“Proton beam therapy represents not only the only treatment option in rare cases such as mine, but also an escape from long term dependence on federally funded government services.”
Needs a commitment
More than 350,000 patients, adults and children, have now been treated globally with proton therapy, the conference was told by Dr Anita Mahajan, a radiation oncologist and medical director of the Mayo Clinic’s proton centre in Rochester, Minnesota.
Mahajan said she had been disappointed to hear of delays to the Adelaide facility and urged Australian authorities to plan not just one but a few across the country “so there can be equal access to this important technology for our patients”.
While it is expensive technology, one unit can serve tens of thousands of patients, “so if you divide the cost over that many patients, quality of life and years attained, I would say it’s well worth it,” she said.
Associate Professor Michael Penniment, a radiation oncologist at the Royal Adelaide Hospital and medical director of the Bragg Centre, has been working to deliver proton therapy in Australia for 20 years.
He told the conference he was hopeful “we’re moving in the right direction”, with support in principle from both the Federal Health Minister Mark Butler and Shadow Minister Anne Ruston.
However, he urged cancer care professionals, and individuals and families affected by cancer, to lobby their MPs for an urgent solution to the facility, saying both lives and quality of life are at stake.
While Penniment welcomes moves by other states, particularly Queensland, to also host proton therapy facilities, he says Adelaide is the obvious first choice, with so much work already done.
“Lot of states are saying they want proton therapy, [but} you can’t just put up your hand and get it,” he said. “The workforce needs to be trained over period of years and be supported and funded.”
Penniment says he understands an independent review commissioned by Minister Butler identifies three different providers who could step in with the necessary equipment to get the Bragg Centre up and running, amid estimates that up to $60 million extra in funding may be needed, alongside some building modifications.
Penniment said the Adelaide project is not looking for an open cheque and would expect and welcome a rigorous review of the options.
“It just needs a commitment,” he said.
But even if it got the signoff this week, it’s believed the centre would not be operable until 2028, an ongoing delay that has huge costs for would-be patients and families — for those who can access overseas treatment and for those who can’t.
And the demand is going to increase over the next few years, he told Croakey.
“Until we meet that with a proton therapy unit, then people will be either dying with their disease that we could have cured, or they’ll be getting serious life changing toxicity.”
Have heart
Billie Tuckerman is open about the “dark moments” her family experienced during her daughter’s treatment in the US, including flying out of Australia on Evelyn’s first birthday, leaving behind her husband Will and son Edward, then six.
“It was quite a full-on experience, obviously, because we didn’t even know, when I said goodbye to my husband…if she was coming home with me or in a coffin,” she said.
As well as proton therapy, Evelyn has been through “18 rounds of fortnightly chemotherapy, multiple surgeries, endless scans all under general anaesthesia, endless transfusions of blood products and copious amounts of medication to deal with the horrible side effects from the treatment”.
But she is luckily still with her family today, has been classified for two and a half years as having ‘no evidence of disease’, and will turn four in May.
“She walks and talks and she’s a sassy little girl who I adore,” Tuckerman said.
Unfortunately, though, statistics show that Evelyn has a high chance of relapse, Tuckerman told the Prime Minister and Premier. If this happens, she will need further proton therapy.
“Ultimately, I want to know that this will be an option to save her should the time come,” Tuckerman said. “Please have heart.”
Watch this video interview with Dr Mahajan, talking in more detail about proton therapy, her own career, and implications for healthcare and research under the Trump administration:
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