When Matthew Owen was given less than a year to live in December 2014, he did a lot of living in between bouts of chemotherapy.
He jumped out of a plane, bungee-jumped, swam with whale sharks and had his last Christmas with wife Karen and son Will.
Matt Owen is being treated for a rare form of cancer with a drug not funded by the PBS that costs $230 a day. Photo: Sitthixay Ditthavong
Since then, the Canberra man has celebrated another Christmas with his family and even claimed fifth in the world in his sailing division, despite his gall bladder cancer.
But his second chance at life has come at a cost - $230 per day to be precise.
It's not the Pharmaceutical Benefits Scheme-funded chemotherapy which has extended his life but rather a series of targeted therapies which zero in on the way his cancer mutates and keep it at bay.
The catch? These drugs - albeit wildly effective in Matthew's case - don't qualify for subsidisation as he has the wrong type of cancer to use them.
And while Matthew can almost afford to keep drawing out his life with drugs, he knows most people aren't so lucky.
Matthew, Karen and Will Owen at home in Canberra with dogs Stella and Buddy. Photo: Sitthixay Ditthavong
A different kind of cancer
One of Matthew's drugs - Herceptin - is traditionally used to fight breast cancer and has been listed on the PBS since 2006.
It "irritates" him that the drug is subsidised for some patients, but not others.
"The drug I'm on is not some revolutionary, not-sure-if-this-drug-works-or-not thing, it's a breast cancer drug," Matthew said.
"Most people who are on it in the oncology ward are getting my treatment and they're getting it for free [but I'm not] just because I've got a different kind of cancer."
Matthew's plight echoes that of Sarah McGoram, a Canberra mum who has burned through all of her PBS-subsidised treatments fighting gastrointestinal stromal tumours.
Sarah's current treatment also targets the drivers of her tumours, not the site of them, and thus is not approved for subsidisation.
The drug is approved however for patients with metastatic colorectal cancer who are intolerant to other treatments.
Matt Owen is fortunate his gall bladder cancer has a targetable driver. Photo: Sitthixay Ditthavong
The magic bullet?
The way we treat cancer is becoming more "sophisticated" with the molecular characterisation of tumours, Australian National University Medical School professor and oncologist Desmond Yip said.
"What we used to do in the past is treat everyone the same, you've got first line treatment, second line treatment, third line treatment and it was usually chemotherapy-based and it was often hit or miss whether the patient would respond or not, chemotherapy was not very selective in targeting the molecular subtypes of cancers," Professor Yip said.
Professor Yip said there was more and more evidence drugs developed for cancers in one part of the body could target cancers in other parts, if they had a common driver.
"It's what we call targeted therapy. It's been the dream of scientists over the ages to have a targeted therapy or magic bullet that you can use to hit the cancer cells," he said.
Not everyone has treatable mutations but Professor Yip said in the case of Herceptin, there was a "decent body of evidence" to prove it worked in two tumours with the same receptor.
"About 30 per cent of breast cancers have a HER 2 receptor. In gastric cancer which also responds to that antibody Herceptin or Trastuzumab is about 10 per cent so they're two cancers where you've got good data where they've done the trials showing it works," he said.
"But in biliary cancers or pancreatic cancer, the incidence might be quite low, like less one per cent so it's very hard to do a clinical trial because you've got to screen a lot of patients to find those sort of patients who've got that expression at the receptor to prove that the drug works."
Professor Yip said the game was gradually changing but was largely being driven by academic institutions with access to drugs and clinical trials.
"It's a very exciting era that's coming through in terms of being able to personalise medicine with cancer and we can be more selective in terms of how to treat patients," he said.
"I think it requires fundamental change in the way the PBS assesses the effectiveness of drugs and the funding model. It is happening but to get that information together takes a lot of time."
Karen, William (10), and Matt Owen at home. Photo: Sitthixay Ditthavong
The changing face of cancer treatment
Time is a luxury cancer patients don't usually have.
Matthew's wife Karen said it is a "miracle" he is still around, still managing the Canberra Yacht Club, and still running around after their 10-year-old son.
She wanted people to know there was a difference between "throwing" money into treatments that only briefly held off the inevitable and investing in drugs that let people live their lives.
"There's not an endless pot of money for these drugs and I understand that but younger and younger people are getting rare cancers and in 20 years time that's going to double and we need to do something," Karen said.
"Instead of lining up 10 people with gall bladder cancer for toxic chemos, they should say 'well let's just wait a second, let's send all of these biopsies to the Caris laboratories, find out what their mutations are and treat each one independently targeting that mutation if it shows up'. That's really the changing face of cancer. They need to catch up."
Matthew said it boggled his mind that "government will fund and pay for treatment that won't work and then you find one that works and they won't pay for that".
"The problems you have from the PBS and funding point of view is how fast technology and medical research is going and the government legislation isn't being that dynamic to allow it," Matthew said
"I could still be on - well, I still wouldn't be, I'd be dead - standard chemotherapy and the government will say oh we'll pay for that, that's fine' but that pill doesn't work."
Karen said, "You'd be better off not giving Matthew those drugs that really only halted it very temporarily, very briefly and use the money that you had for those drugs on these ones that you know work."
Do you know more? Email katie.burgess@fairfaxmedia.com.au