Parents, cancer patients say lack of proton therapy in Australia is 'an embarrassment'
Evelyn Tuckerman (centre) was diagnosed with a rare form of bone cancer called Ewing sarcoma. (ABC News: Daniel Taylor)
In short:
The family of a child forced to travel overseas to receive proton cancer therapy is calling on the state and federal governments to urgently deliver the service in Australia.
The first proton cancer treatment unit in the Southern Hemisphere was meant to be built in Adelaide, before the contract with the provider was terminated.
What's next?
The South Australian Health and Medical Research Institute is suing ProTom International for $US32 million over claims of misleading and deceptive conduct.
When seven-month-old Evelyn Tuckerman was diagnosed with a rare cancer in 2022, her mother was told proton therapy would be her daughter's best chance for survival.
But the lifesaving treatment was not available in Australia, and still is not three years later despite plans for a service dating back more than a decade.
"I would honestly say the fact that we don't have proton therapy here in Australia, it is an embarrassment,"Billie Tuckerman said.
The $US49.5 million contract to deliver Australia's first unit in Adelaide was awarded in 2018, but the South Australian Health and Medical Research Institute (SAHMRI) terminated it in October last year due to cost blowouts.
SAHMRI is suing the technology firm behind a now-collapsed proton therapy unit project. (ABC News: Carl Saville)
SAHMRI, an independent, not-for-profit health and medical institute, is now suing the technology company behind the project, ProTom International, for $US32 million ($48.6 million) alleging breach of contract and misleading and deceptive conduct.
Court documents show ProTom requested a further $US57.2 million from SAHMRI to complete the work. Its CEO has told the ABC the figure was later revised down and blamed the cost escalation on the coronavirus pandemic.
The company has denied misleading SAHMRI.
Since then, the future of the unit has been uncertain.
Ms Tuckerman, who is also the co-chair of the Adelaide project's consumer advisory group, said it was time for action.
She has written to the state and federal governments but is still waiting for answers.
"There's 135 treatment centres in the Northern Hemisphere and there's none in the Southern Hemisphere, yet Australia, [the] Australian government likes to say that we're on the forefront of modern medicine ... I don't agree," she said.
Billie Tuckerman has been a fierce advocate for the technology and wants to see it in Australia. (ABC News: Daniel Taylor)
A proton cancer therapy unit delivers precise beams of high-energy protons to destroy cancer cells while minimising damage to surrounding healthy tissue.
The Australian service was set to help 700 cancer patients annually, particularly children with certain cancers and adults with rare tumours.
About $115 million in public funding was committed by the state and federal governments.
It was hoped the unit would help 700 cancer patients annually. (Supplied: SAHMRI)
In a statement, federal Health Minister Mark Butler said the contract for the proton therapy unit was struck under the state Liberal and federal Coalition governments.
"We've lost significant taxpayer dollars because of that deal, but more importantly we've lost years in developing a capability Australia should have, particularly to care for children with cancer," the statement said.
Mr Butler said he was working to see whether there was a "viable proposal" for the proton unit to still be delivered in South Australia.
"If not, we're going to have to go to other jurisdictions, because this is not going to be a South Australian service or a state-specific service, this is going to be a national service."
Evelyn was declared cancer free about three years ago. (Supplied: Billie Tuckerman)
Ms Tuckerman ended up travelling to the United States to access proton therapy treatment for Evelyn. The federal government funded the $500,000 medical trip.
But she has been left with mixed feelings about going overseas for care after her daughter suffered complications.
Her husband and son remained in Australia.
There was also $40,000 in out-of-pocket expenses.
"Part of me is so forever grateful that we had the opportunity to go over and have the treatment, because it really was the best for her body at the time. But it also came with a big emotional toll on me and the family,"she said.
At two-and-a-half years old, Evelyn had been under general anaesthetic more than 60 times — doctors had to use different sedatives because her body had become accustomed to the drugs. (Supplied: Billie Tuckerman)
Ms Tuckerman said she did not care where Australia's first proton therapy service was located, as long as there was one and it was delivered soon.
But she said it made sense to try and make an Adelaide service work, as the unit was to be housed in a purpose-built bunker beneath a new building next to SAHMRI, known as the Bragg Centre for Proton Therapy and Research.
"It has a bunker, it has a centre, it has a project team, and it has the medical staff ready to go," she said.
"We are far [further] ahead than the other states and territories [in] getting this project to actually opening the doors to patients."
Evelyn had to travel to the United States for specialised treatment. (ABC News: Daniel Taylor)
Evelyn has also undergone chemotherapy. While she's now showing no evidence of cancer, she is battling other health issues.
But her mum feels grateful that her little girl is still alive, and she is passionate about advocating for other families dealing with a cancer diagnosis.
"There are many Australian families currently or still unfortunately on the horizon who will need that treatment centre.
"My feelings about the future for proton therapy here in Australia are quite simple — we just need it."