Pancreatic cancer patients say Australia's slow drug subsidy process could cost them access to promising new treatments

Dee Ozolins, a 50-year-old mother of two from Sydney, was told she had nine to 12 months to live. That was a little over a year ago. She has since had major surgery, months of chemotherapy and a terminal pancreatic cancer diagnosis, and she describes every morning as a gift. She and her husband, Greg, sometimes wish others could value life's simple pleasures as they do, without the heartbreak that taught them.

What she finds harder to accept is a matter of timing. A potentially groundbreaking class of pancreatic cancer drugs is emerging overseas. Australia's Pharmaceutical Benefits Scheme takes a median of 22 months to list new medicines, and Dee fears that wait could put the treatment out of reach. "We don't have two years," she told AAP. Knowing that drugs exist which could give people far more time, but that they cannot be accessed, is something she calls inhumane.

The numbers explain her urgency. Pancreatic cancer, often called the silent killer, is among the deadliest of the common cancers in Australia, with a five-year survival rate of just 14 per cent. Almost two-thirds of people diagnosed die within 12 months, and only 22 per cent live two years. Treatment advances have been few for decades.

The new drugs target the RAS pathway, a system of signals that tells cells when to grow and divide and that can drive cancer when faulty. More than 80 companies are developing treatments aimed at it. Michelle Stewart, chief executive of Pankind Pancreatic Cancer Australia, says options have barely changed in three decades. If early treatment fails, she says, there is little left to try. She calls the new drugs the start of a new era, though not a cure, and says even a few extra months could let a patient survive long enough to benefit from another therapy. "It's the best of times and the worst of times," she says. The drug has not yet been submitted for approval in Australia, and she fears the system will not move fast enough once it is.

Medical oncologist Michael Lee says early trial results suggest the approach could substantially extend survival compared with conventional chemotherapy, with a better quality of life, since chemotherapy can leave patients debilitated by side effects. But the anticipated price could exceed $400,000 per patient. Dr Lee points to melanoma, where immunotherapy now costs the government about half a billion dollars a year. A decade ago, people with metastatic melanoma often died within a year; today more than half can survive 10 years. Pancreatic treatments may add months rather than years, which makes the economic case harder. Healthcare dollars only stretch so far, he says, and the government has to cut the line somewhere. "Unfortunately for pancreatic cancer, it lands on the wrong side of the fence."

For patients, those months matter. Dee had a Whipple procedure, a complex operation removing part of her pancreas and surrounding organs, then seven months of chemotherapy. Her first scan afterwards showed the cancer had spread to her lungs. Early genomic testing had already identified her tumour's genetic characteristics, which let doctors find an experimental treatment she qualified for. At that point, she says, another month or two would have felt extraordinary. Instead her cancer has stayed stable for a year. She remembers weighing 35kg and being unable to leave the lounge or take part in family life. "It's given me my life back, these new types of treatments," she says. The source is explicit that her case is not evidence the drug Pankind is championing works, only a demonstration of what access to experimental treatment can mean.

Pankind is urging the federal government to act on a recommendation from its 2024 Health Technology Assessment Review that could speed PBS access for promising treatments meeting urgent unmet clinical needs. Dr Lee describes a vicious cycle: poor survival means fewer advocates, less attention and fewer resources for breakthroughs. Ms Stewart says Pankind has been working with Health Minister Mark Butler's office, and that the government has signalled its interest to the drug's manufacturer on behalf of pancreatic cancer patients. Once the drug is submitted, Pankind wants it and every promising treatment after it assessed without delay, hence its Every Week Matters campaign.

Dee intends to keep speaking while she can. "We die waiting," she says. The next marker is the drug's submission in Australia, and whether the 2024 recommendation is applied by then.