Australians with oral cancer are having to pay as much as $50,000 out-of-pocket to replace their teeth or go without them, because of a gap in the nation's healthcare system.
Surgeons and advocates have told 7.30 about a complex and inequitable process, where cancer patients have become collateral damage because of the government's reluctance to open a "Pandora's box" when it comes to broader dental funding.
As a result, patients are often being forced to make an "unthinkable choice" — remortgage their homes or drain their superannuation to fund dental prosthetics — or forgo them entirely.
"I don't think it's fair that patients need to make that choice," said Jonathan Clark, director of head and neck research at Chris O'Brien Lifehouse hospital.
"It almost makes me feel ashamed to be part of a health system where that's what the only option is."
Professor Clark said while some oral prosthetics and the cost of fitting them for mouth cancer patients were covered by public or private funding, typically there were no subsidies for an essential part of the process: replacement teeth.
"If we're talking about a breast prosthetic that's needed to be placed because of a woman having breast cancer, that's covered," Professor Clark told 7.30.
"But if you've had your jaw removed and you've lost your teeth … for some reason that's not covered.
"I don't really have a good explanation for why there is this divide, but I think it really isn't fair that there is this inequity."
'I don't think it's fair'
That inequity is now costing retired teacher John Mealings dearly.
More than two years ago, persistent infections after a wisdom tooth extraction led doctors to discover he had stage 4 oral cancer.
During surgery, his jaw was reconstructed with his leg bone, and some teeth were removed.
The 73-year-old Orange resident is now facing a $20,000 bill for replacement dental prosthetics.
"I'll have to dip into my superannuation, but at my stage of life at least I have some super I can dip into," he said.
"I think it's an anomaly in the medical system … I don't think it's fair."
Professor Clark said he believes the anomaly is related to a long-running argument about whether dental should be added to Medicare.
"I think in many ways it's historical because of the separation between dentistry and medicine. It's a very artificial separation but it's one that I think the government doesn't want to solve because it really opens Pandora's box," he said.
But Professor Clark argued dental prosthetics after cancer surgery could cost as much as $50,000 and should be treated differently.
"For patients with mouth cancer, we're not talking about covering every aspect of dentistry," he said.
"It is this specific requirement for a dental prosthetic that will restore form and function after major cancer surgery.
"It could be done in a way that is not overly expensive or costly to Australian society."
'Remarkable' 3D-printed teeth
Professor Clark and his colleagues believe a short-term answer to the issue lies in 3D printing, a technology which has revolutionised medicine in recent years, creating patient-specific devices like prosthetics.
At Chris O'Brien Lifehouse, 3D printing machines are used to turn resin into teeth, creating what doctors call "Jaw-In-A-Day".
Oral and maxillofacial surgeon Tim Manzie said the 3D-printed devices were significantly cheaper than other prostheses, and could be fitted during cancer removal surgery.
"It allows someone to basically go off to sleep in the morning, have part of their top or bottom jaw removed and then wake-up with a completely new jaw and new teeth in place."
The Jaw-In-A-Day prosthetics are usually not durable enough to be a long-term solution, but Dr Manzie said they save patients thousands of dollars as an interim measure.
Oral cancer patients also typically need time for their mouths to heal and change before getting permanent prostheses, and the 3D-printed device means they can have affordable teeth while they recover.
"Survivorship's a term that we now look at for cancer patients and for the goals of cancer treatment," Dr Manzie said.
"It simply used to be aiming for a cure but now that we know people are living longer after we've treated them, we want them to have a quality of life that they are happy with and can move forward with, and so that's where the teeth come into that as an important aspect."
At the end of a 12-hour surgery to remove his cancer, John Mealings was one of the first people to be fitted with the 3D-printed prosthetic at Lifehouse.
While it is not a long-term solution — and he will ultimately need to pay for a permanent prosthetic — they have lasted for over two years.
"It's like, if you can imagine, a set of false teeth for your bottom jaw — it's basically half of one of those. And it just sits on the side of the jaw just mounted on the bone," he told 7.30.
"But the fact that they're made by a 3D computer is quite remarkable.
"You certainly couldn't function without teeth … they're essential to eating, chewing and the like and if I didn't have them, I'd probably be still back on eating or drinking blended foods."
Broader funding needed
Only a few hospitals offer the Jaw-In-A-Day prosthetics, and Professor Clark said Lifehouse currently produces the bulk of them with the backing of philanthropic funds.
He has called for state and federal government funding so more patients can access them.
"It's a bit like having a car where you build all of the components from scratch and every part of it the patient has covered except for the wheels and the tyres," he said.
"You can't drive a car with no tyres and you can't restore form and function after mouth surgery without teeth."
Head and Neck Cancer Australia CEO Nadia Rosin said for now, 3D printing technology was out of reach for the roughly 5,000 patients diagnosed with head and neck cancer each year.
She said there needed to be broader government funding for dental prostheses so that all patients could have access to a mouth that functions as fully as it can after life-saving surgery.
"It's the missing piece of the puzzle," Ms Rosin said.
"These people's lives are being saved by this complex surgery, but they need help to be able to put their mouths back together again once they're cured.
"It's hugely expensive … and the reality is that most people who survive head and neck cancer, particularly in those lower socio-economic groups, will never have the care that they need to put their mouths together again after they've been cured."
In a statement, a spokesperson for the federal government said it was waiting for health department advice on an independent review examining the gaps in coverage for prostheses and strategies to address them.
The NSW government said affordable and timely access to dental services is a whole of sector responsibility.
'One option is to remortgage the house'
Those government statements have left tongue cancer survivor Jen Mackay feeling frustrated.
The 47-year-old from Burra, NSW, has dedicated herself to advocating for other mouth cancer patients who survive one ordeal, only to face a financial one.
She read the NSW and federal government responses provided to 7.30 while at Parliament House, where she met with politicians to push for funding for dental prosthetics.
"This is really disappointing. It misses the point that head and neck cancer patients with specialised needs aren't being addressed by the public health system," she said.
"While everyone's scared of funding dental, this is a small percentage of the population that really needs help."
Along with having half her tongue removed, complications from radiation treatment meant Ms Mackay also needed to have part of her jaw and teeth taken out.
"I no longer make proper effective saliva which makes eating really difficult," she told 7.30.
"I also have half a tongue which has heavily impacted on my speech.
"My fatigue levels are really high. I can only work part time now."
On top of those daily struggles she is also facing additional pain — a bill of more than $20,000 for a replacement dental prosthetic.
"One of our options is to remortgage the house to come up with the money to pay for the teeth," she said.
"You know, it's not ideal … I'm not even sure the bank will let us do that."
Ms Mackay said while she knew policy changes would be too late for her, she would keep pushing for a fairer system for others.
"I hope in the future that the government realises that by putting in that funding for this small group of people they're going to reap the rewards. These people are going to be able to go to work and participate in society and pay their taxes," she said.
"Until everything is equitable across cancer treatment ... I will keep arguing the point to get dental prosthetics and facial prosthetics funded for head and neck cancer patients and I won't stop until it changes."
Written by: Stephanie Dalzell and Celina Edmonds, ABC News.
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