The man who should be four years dead

John Ashton - the man who should be four years dead.
Photo credit: Supplied.

John Ashton had always wanted to see Cape Reinga. When he found out his time was running out, the 47-year-old set off in a campervan with his wife Louise and their two young boys, on a bucket list road trip.

"It was my last hurrah," he says.

But in a remote Northland shop, by blind luck, Louise picked up a magazine that would change his life. In it was an article on cancer trials, leading John to a medicine that means four years on, he's still alive.

The Otago University pharmacologist didn't seem a likely candidate for lung cancer.

He was a fit non-smoker, who could run 10km in 35 minutes. By the time doctors worked out what was causing his chronic cough, John was riddled with tumours.

"I couldn't walk quickly without having to sit down, nauseous and in pain," he says.

He went through chemotherapy knowing it was unlikely to do much: "with that type of cancer 50 percent of people are dead within six to nine months."

The article on Australian research gave him new hope. They were trialling a new medicine, Crizotinib, which targeted his particular mutation of lung cancer. His oncologist here didn't know it existed.

But there was a hitch - unfunded in New Zealand, it would cost him $13,000 a month. The family was over the moon when Pfizer granted him compassionate access.

John says within a week, he'd stopped coughing. Within a month, the tumour had almost disappeared. Within two months, he was running again.

"I'd gone from being pretty close to an invalid, to someone who was not just surviving cancer but living an active, normal life again and it's stayed that way.

"To me, that's a modern miracle. It's a penicillin moment, really."

But others have not had the same opportunity. Four years on, Crizotinib remains unfunded in New Zealand.

"I know people in Australia in the same category as me - doing well. But I don't know many in New Zealand. And the reason for that is because they tend to die quickly," John says.

PHARMAC's chief executive, Sarah Fitt, says its job is to make difficult choices about treatments that will obtain the best health outcomes from within the funding available.

She notes that the number of New Zealanders treated with funded cancer medicines has grown by 50 percent since 2011, and spending has increased by $92 million.

The Lung Foundation's CEO, Philip Hope, says there are six drugs waiting for PHARMAC funding which would help treat 1,800 of the 2,200 people who are diagnosed with lung cancer annually. It's New Zealand's deadliest cancer - the number of people it kills each year is greater than the national road toll.

He says often New Zealand is still relying on standard chemotherapy, when the science has moved on to innovative medicines that can target individual cancers.

John Ashton - the cancer survivor who should be four years dead.
Photo credit: Supplied.

"PHARMAC are playing God by funding only some medicines," he says.

"The thing with lung cancer is, with the right treatment at the right time, patients live well. But at least 70 percent of sufferers don't have that option. They simply go home to die prematurely. We need to do better."

Philip says it's time to make screening and treatment a national priority.

There is currently a growing waiting list of more than 100 medicines that experts have prioritised to receive funding. This affects more than quarter of a million Kiwis who are waiting to access medicines for a wide range of chronic diseases, like diabetes and arthritis, as well as cancer.

Crizotinib is not even on this waiting list, because PHARMAC's clinical advisory committee rejected its application, due to concerns over a lack of evidence of long term efficacy, and cost effectiveness.

John Ashton says he is living proof Crizotinib works. He knows his remission may be temporary - but for now he is not just surviving, but thriving. He's become a cancer researcher, mentoring "bright young scientists" studying his own disease. He's running again.

Most of all, it's given him time to make memories for his children.

"That's going from my youngest son being six years old and me thinking he wouldn't remember me, to being an 11-year-old who I've spent all that time with and travelled with.

"And now I'm teaching my older boy how to drive - which is actually terrifying! It's the little things like that. I'm supposed to be dead. Instead I'm contributing to my work, society, my friends, my family."

He wants others to have those years too.

"I get very frustrated, angry and outright sad for people in New Zealand who have not been as fortunate as me. Fortunate is a funny word, isn't it - but it's all relative.

This story was created for Medicines NZ