South Australian mother Carol Coombs is forever grateful for the revolutionary cancer treatment she was lucky enough to access on the other side of the world.
But she fears uncertainty around a much-anticipated proton therapy unit in Adelaide might deny others the same life-extending opportunity she had.
“I know quite a few people in Australia that are kind of hanging out for this,” she said.
“That’s who I feel for — the little young ones that are just hanging out for this, because there is just no other treatment.”
The Australian Bragg Centre for Proton Therapy and Research was promoted as the first in the southern hemisphere to offer proton therapy — a type of radiotherapy that uses proton particles, rather than x-rays, to destroy cancer cells with minimal damage to surrounding healthy tissue and organs.
South Australian Treasurer Stephen Mullighan said he now had “grave concerns” over whether the multi-million-dollar project could be delivered, due to issues with the contracted company and global supply chains.
The federal government announced $68 million for the project in 2017, a significant portion of which, Mr Mullighan said, has been paid to the company developing the unit.
“They’ve manufactured a significant amount of the unit to date,” he told ABC Radio Adelaide.
“But what’s under serious threat now is their capacity to complete the project and for us to get it into the country, here to South Australia, and get it successfully installed and commissioned.”
For Australians waiting for the life-saving treatment on home soil, the setback is likely to come as a huge blow, Ms Coombs said.
When she was diagnosed with chordoma — a rare form of cancer in the spine — in 2010, proton therapy was the only option she had.
She travelled to the United States to get the highly specialised treatment and, at the time, was told it would likely buy her five more years — a life expectancy she was “ecstatic” about, in the circumstances.
It has been more than a decade since she had the treatment, and while the cancer has now returned, she said she was forever grateful for the time she has had with her family, especially her children.
“Those years have just been so precious to me and I am ever so grateful for having that proton radiation,” she said.
Her expensive overseas treatment was made possible through a government fund that Ms Coombs said was difficult to get approval for, as well as some generous fundraising from her local community in the Riverland.
Having a similar facility in Adelaide would make the specialised cancer treatment much more accessible.
“It was a nine-week program to go through, it’s a long time to be away from home, your family, your friends, your support crew and what you know.
“To have it here on your doorstep … would be fantastic, it would be a totally different experience to what I had and that’s why I’m really hoping this proton centre will go ahead.”
Government ‘exploring options’ for specialised cancer treatment
The $500 million Bragg Centre, a large multi-storey building on Adelaide’s North Terrace, was created to house the proton therapy system, which would be operated by the South Australian Health and Medical Research Institute (SAHMRI).
The unit was proposed with the intention of allowing 700 cancer patients per year to access the treatment in Adelaide, instead of travelling overseas.
“It’s the only form of radiation that we can treat very precise areas in the spinal cord and in the brain without damaging the surrounding tissue,” SAHMRI executive officer Professor Steve Wesselingh said last year.
Mr Mullighan said that increasing requests to bring forward payments to keep the project on track caused “such a level of alarm” that a delegation from SAHMRI and government officials flew over to meet with the company building the unit “to understand why they continue to ask for variations in their contract”.
“We’re still trying to explore our options as to how we can get this unit successfully delivered or, if that’s not achievable, whether we need to look at alternatives and what the cost of that is.”
Mr Mullighan said the company has recently appointed a new chief executive and the state government was seeking assurances from its shareholders that the complicated build could be completed.
“There’s been a specific bunker built for this particular machine, of which there is only one in operation in the world, in Massachusetts,” SA Health Minister Chris Picton told ABC Radio Adelaide.
Australian patients devastated by delay
Ms Coombs is part of an Australian support group for chordoma patients, and said that many were deeply distressed to learn that the project was under threat.
“They’re totally outraged by it,” she said.
“It’s devastating because it’s that hope that we look for, that little bit of hope, so it wasn’t good news at all.”
She said the treatment was the only option proven to work against rare cancers like her own, and it was crucial that it was available in Australia.
“It gives us rare-cancer patients a bit of hope because that’s all we want, we just want another day, we want another month, we want another year,” she said.
In a statement on its website, the Australian Bragg Centre for Proton Therapy and Research said its team “continues to make important advancements” separate to the construction of the facility, including growing a clinical quality registry, and supporting Australians’ timely access to proton therapy overseas.
The ABC has contacted the internationally-based company contracted to build the proton therapy unit.