Pancreatic cancer patients face a race against Australia's slow drug subsidy system

Danielle Ozolins, known as Dee, is a 50-year-old Sydney mother of two who was told she had nine to 12 months to live. That was a year ago. She has since had major surgery, a long course of chemotherapy and a terminal pancreatic cancer diagnosis, and she describes every morning now as a gift. What she finds hard to accept is not her own uncertainty but the wait for a drug that may not arrive in time.

Her treatment path was a hard one. Dee underwent a Whipple procedure, a complex operation that removes part of the pancreas and surrounding organs, followed by seven months of chemotherapy. Her first scan afterwards showed the cancer had spread to her lungs. Early genomic testing had already mapped her tumour's genetic characteristics, and that let doctors find an experimental treatment she was eligible for. A clinical trial was her only option once chemotherapy failed.

At that point, she says, she would have considered one or two more months an extraordinary gift. Instead her cancer has stayed stable for a year. She remembers weighing 35kg and being unable to get off the lounge or take part in family life. She says these new types of treatment gave her life back, and she has been able to celebrate family milestones she feared she would miss.

Her case is not proof that the emerging drug championed by the charity Pankind works. It does show what access to experimental treatment can mean. The new class of drugs targets 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.

The stakes are high because pancreatic cancer, often called the silent killer, has seen few advances. The five-year survival rate is 14 per cent. Almost two-thirds of Australians diagnosed die within 12 months, and only 22 per cent live two years. Pankind chief executive Michelle Stewart says treatment options have barely changed in three decades, and that if early treatment fails, the cupboard is kind of bare. She calls the new approach the start of a new era, though not a cure. Even a few extra months could let a patient live long enough to benefit from another treatment.

Medical oncologist Michael Lee says early trial results suggest the treatment could substantially extend survival compared with conventional chemotherapy, with a better quality of life and fewer debilitating side effects. But the drug has not yet been submitted for Australian approval. Once it is, it will face the Pharmaceutical Benefits Scheme, where listing a new medicine takes a median of 22 months. Dee says she does not have two years, and calls the situation inhumane.

Cost is a second hurdle, with an anticipated price potentially above $400,000 per patient. Dr Lee points to melanoma, where immunotherapy costs the government about half a billion dollars a year. A decade ago metastatic melanoma patients often died within a year; he says more than half can now survive 10 years. That kind of long-term survival makes the economic case easier. Pancreatic cancer drugs may add months rather than years, and Dr Lee says the government has to cut the line somewhere, and pancreatic cancer lands on the wrong side of it.

Advocacy is another disadvantage. Survivors of breast, prostate and other cancers can campaign for decades. Pancreatic cancer patients often do not live long enough, Dr Lee says, and there is only so much goodwill families can sustain when asked to keep reopening their wound. Poor survival means fewer advocates, less attention and fewer resources.

Pankind is asking the federal government to implement a recommendation from its 2024 Health Technology Assessment Review that could speed PBS access to treatments for urgent unmet needs. The charity says reforms could bring medicines to patients more than a year sooner, and it is urging Australians to contact their federal MPs. 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 manufacturer. Its Every Week Matters campaign asks that this drug, and every promising one after it, be assessed without delay. Dee intends to be one of the voices while she can. "We die waiting," she says.