“We were devastated, absolutely devastated,” she said.
But she thinks of herself as lucky in a way. Because her cancer has the EGFR mutation, she’s been able to take a drug called osimertinib which from January 1 will be subsidised via the Pharmaceutical Benefits Scheme.
“I’m living my normal life,” Mrs Payne said. While she’s retired from teaching at school, she’s continuing to teach some oboe students at home because she loves it, as well as exercise and enjoy life with her husband David and two new ragdoll kittens.
“The only real side effect is fatigue, I just have a nap in the afternoon.”
The listing on the PBS means osimertinib (or Tagrisso), which costs about $8000 per month, will be $41.30 each script.
“This PBS listing will give an average of 1120 patients per year greater access to a medication which is life-changing,” Health Minister Greg Hunt said.
“This listing could provide patients with a greater chance of recovery, a higher quality of life, and a brighter future.”
Professor John said osimertinib is the “new standard of care” for patients such as Mrs Payne and the PBS listing “makes a big difference”.
He said in randomised trials, osimertinib was shown to be better than the standard treatment because people could remain on the drug for nearly twice as long as the older treatment, and it could give them another nine months of life.
“We have wanted this on the PBS for a long time,” he said.
The drug works by turning off a switch in the cancer cell which the cell needs to survive, Professor John said. It also blocks the cancer cell’s ability to bypass the initial switch, and crucially the drug can also cross the blood brain barrier.
“Having drugs that get into the brain is really important,” Professor John said.
“Because it gets into the brain, there’s less people progressing with brain metastases that causes lots of other problems – paralysis, seizures, nausea, headaches.”
Lung cancer was the biggest cancer killer in Australia despite being the fifth most common cancer diagnosis. It’s estimated 13,258 people have been diagnosed with it this year, and 8641 have died.
“Invariably if you’re diagnosed with lung cancer, you’ve got a much higher chance of dying from it,” Professor John said.
Mrs Payne said she tries not to think too far ahead. While she and David try to stay positive, there are miserable days.
“Sometimes you wake up in the morning and it hits you like a ton of bricks, but we’ve got a heck of a lot to be thankful for,” she said. “Spending time with each other and family and friends, and just enjoying life as much as I can really.”
Rachel Clun is a federal political reporter at The Sydney Morning Herald and The Age, covering health.