Couple face devastating $40k shock after tumour surgery amid calls for the system to be fixed

At just 38 years old, Ian Villareal is staring at a reality no one in Australia should be facing – having almost a quarter of his face removed, alongside a bill of up to $40,000.

Earlier this year, Mr Villareal started experiencing nasal congestion and random nose bleeds.

When over-the-counter medications prescribed by his GP didn’t help, his wife Hayley pushed him to see an ear nose and throat (ENT) specialist.

“It was very nerve-racking,” Mr Villareal said.

After putting a camera through his nostril, the ENT specialist instantly saw a major growth and immediately ordered a CT scan.

Two weeks later, he was diagnosed with a Maxillary Ameloblastoma – a rare and aggressive tumour which affects about one in five million people worldwide.

Ian and Hayley Villareal are having to remortgage their home to pay for the ‘dental’ aspects of his tumour surgery. Picture: Supplied

“At the time we didn’t really quite understand what it meant. They said they’d have to remove it and there’ll be some bone removal and tissue removed, but we didn’t understand how large it was going to be and how life-altering it was going to be,” Ms Villareal said.

The customer service worker is now set to undergo a major facial surgery, which will take 10 to 14 hours and will see almost a quarter of his face removed from the halfway point of his mouth to his cheek bone.

He will be left permanently disfigured – however, that is not his main concern.

Medicare will cover the removal of the tumour and the structural bone reconstruction, which will include taking bone from his legs and a skin graft for his mouth.

Yet the removal and replacement of his teeth is considered dental – and therefore is not covered by Medicare, leaving the couple scrambling to find a huge sum of money.

They have been told to expect a bill of $20,000 to $40,000 for the work involving Mr Virreal’s teeth, which will be vital to his future ability to both talk and eat, as well as his livelihood.

Mr Villareal during his wedding in 2017. Picture: Supplied

“(My job) requires me to speak face-to-face on the phone via video conferencing,” Mr Villareal said.

“My teeth and my ability to articulate words is just so important to my role. Not to mention even just being able to chew, swallow, all of these functions of the mouth that you kind of just take for granted.”

The bill is something the young couple is having to process on top of the huge, life-changing surgery.

“To have to consider that much money needs to be spent just to return to some form of normality is just mind-blowing,” Mr Villareal said.

The couple have been told the bill could cost up to $40,000. Picture: Supplied

Mr Villareal will also no longer be able to practise Muay Thai, a sport he has loved for more than a decade.

“It’s a confronting situation,” he said.

He will have to eat pureed food for about four months before he is finally able to have his teeth replaced.

Mr Villareal on his 38th birthday in January. Picture: Supplied

“We’ve been trying to stay really positive, but I think once he comes out of hospital and comes home, the reality of changing the way he speaks, the way he eats, having only pureed food for a period of time. I think that’s really going to impact us,” Ms Villareal said.

“I don’t think we’re going to want to go out to see people or see friends. I think the immediate three to four month period is going to be really tough.”

Friends of the couple encouraged the pair to start a GoFundMe, which they’ve done, primarily to raise awareness about this stark gap in Australia’s medical system.

They want to see Medicare fully fund oral rehabilitation for head and neck cancer, tumour and trauma patients.

“It’s incredibly cruel and just shortsighted,” Ms Villareal said.

Mr Villareal was diagnosed with the tumour in March. Picture: Supplied

A photo of the couple from 2011. Picture: Supplied

Head and Neck Cancer Australia chief executive Nadia Rosin said Mr Villareal’s story is all too familiar, with about 300 cancer patients a year also hit with this glaring Medicare gap.

She said some people who can’t afford to pay for the “dental” portions of their surgeries don’t return to work. Some fear leaving the house and become reclusive.

“It’s almost like taking a car to the mechanic and you get the motor fixed, but they take the tyre off so you can’t drive it anyway,” Ms Rosin said.

“In Australia, we have a gold standard health care system.

“But that last piece of the puzzle where they need teeth to be able to chew, to be able to eat, swallow, speak and smile again is not covered.”

Head and Neck Cancer Australia chief executive Nadia Rosin. Picture: Supplied

Ms Rosin said that patients are often not told of the major costs until after their surgeries.

“The penny drops that as far as our Medicare system will go, they will have to self-fund the dental implants that they need so they can … be able to eat, smile, talk,” she said.

Funding knocked back again in 2026 budget

Head and Neck Cancer Australia has been fighting for years to get government funding for a dental prosthetics scheme.

This year, the charity asked for $7 million per year to set up a similar scheme to the government’s breast prostheses program.

The program provides up to $400 for prosthesis following cancer surgery, or up to $800 for a double mastectomy through Services Australia.

However, the funding was knocked back once again in this recent budget.

The couple have had to remortgage their house to pay for their medical bills. Picture: Supplied

“We’re incredibly disappointed to not secure funding. We’re talking about people who’ve literally had part of their face removed,” Ms Rosin said.

The terrifying fact is that more and more young Australians are facing the same financial burden as Mr Villareal, as the rates of human papillomavirus (HPV) continue to rise.

Experts believe the rise is due to more HPV strains developing, with the rates of oral cancer in young women soaring over the past 30 years.

“We know some people who, unfortunately, will never have the dental rehabilitation that they need after those surgeries because they can’t afford it,” Ms Rosin said.

‘Jaw in a day’

Chris O’Brien Lifehouse Hospital director of head and neck research Jonathan Clark specialises in oral prosthetics, and his team recently developed a system that uses digital mapping and 3D-printing machines to turn resin into teeth.

Despite the “Jaw-In-A-Day” being a cheaper alternative that helps patients return to normal life earlier, Mr Clark said that at “no stage has any level of government said ‘yes we are likely to fund this’”.

“We get a lot of referrals, and there is almost no provision for subsidised funding for dental prosthetics, and we feel that is quite unfair,” he said.

“Some patients lose their jobs because of the way they look or the way they talk. But it’s a Pandora’s box for the government – they don’t want to touch it.”

Mr Clark said he thinks this is partly because of the “traditional” association of head and neck cancers with smoking, however, that is becoming less and less the case.

“There is that stigma attached to it, but most people we see are nonsmokers,” he said.

“It’s not the same cohort that it once was.”

Chris O’Brien Lifehouse Hospital director of head and neck research Jonathan Clark specialises in oral prosthetics, and his team recently developed a system that uses digital mapping and 3D-printing machines to turn resin into teeth. Picture: Supplied

The 3D printing team at Chris O’Brien Lifehouse. Picture: Supplied

Opening Pandora’s box

The recent budget brought funding into the Public Dental Services for Adults, which assists low-income patients in public dental clinics and dental hospitals.

However, the scheme has led to major waitlists and is only available to concession card holders.

Last year, the federal government’s own Australian Institute of Health and Welfare reported that in 2023–24, more than 88,000 hospitalisations across the nation for dental could have been prevented with earlier treatment.

Health Program Director at the Grattan Institute Peter Breadon said the policy is no longer “sensible” and is costing Australians more money in the long run.

Health Program Director at the Grattan Institute Peter Breadon. Picture: Supplied

“It’s clearly wrong and unfair that they’ve left the mouth out of Medicare from the start,” he said.

“Each year we see a new record level of people going to hospital because of problems with their teeth that could have been prevented by going to the dentist.

“There’s so many downstream consequences of denying people dental care; unnecessary hospital visits for a system that’s already under strain, there’s people taking days off work, it just doesn’t seem to make a lot of sense.”

Little progress made after senate inquiry

In 2023, the Senate established a select committee into the provision of and access to dental services in Australia.

The committee made 35 recommendations for reform, including universal coverage for essential dental care, however, little has been done.

St Vincent’s Hospital consultant dentist Peter Foltyn said Australia needed to take a look at Japan’s 80/20 dental program. The publicly-funded program aims to see all 80 year olds have at least 20 teeth.

He also believes that Australia needs to adopt the European method of integrating dental into the medical system instead of having it “coexist”.

“What our research shows is you really can’t separate poor oral health with other illnesses,” he said.

Federal Minister for Health Mark Butler said he knows the enormous challenges survivors of head and neck cancer can face managing the physical side effects of their treatment.

“That’s why I have indicated I would like to continue discussions with stakeholders in this sector,” he said.