Rare cancers, submarines and the price of the messy middle

For too long, rare cancer has been the story waiting in the shadows. The diagnosis that falls between the cracks, the voices too often unheard, the lives measured in uncertainty. But something significant is shifting. The advocacy is getting louder and the story of rare cancers is being rewritten.

Christine Cockburn, CEO of Rare Cancers Australia, opened CanForum at Parliament House, with a powerful call to confront the inequities facing people with rare cancers. Drawing on the words of Professor David Thomas, Founder and Chief Science and Strategy Officer of Omico, she described a turning point where “we have crossed a Rubicon in cancer care.” But she cautioned, “…rare cancers have far too often been left standing on the other side.”

Patient advocates described a “messy middle”, the uncertain life between treatment cycles. The days and weeks of waiting for the next scan, the next result, the next appointment. It is learning to live with a disease that refuses to follow a predictable path, while trying to hold onto the ordinary rhythms of life.

For Lauren Rayner, diagnosed with stage 4, grade 3 neuroendocrine carcinoma (NEC), navigating that uncertainty has meant taking extraordinary measures to keep moving forward.

Rayner took a massive risk and travelled to Germany to access treatment at enormous personal cost. The treatment worked and she reached early remission, an outcome she describes as unheard of for someone with stage 4 disease. And yet, even with that evidence, the treatment remains unavailable to her through the Pharmaceutical Benefits Scheme (PBS).

She remains grateful to the drug company that has provided compassionate access, but the financial reality is confronting.

“Who can come up with $11,000 a month plus your mortgage plus normal medication, plus school fees, your day-to-day living bills? I would already be dead,” she said. “A lot of the other people are self-funding, or they decide that they don’t want to send their family into massive debt. So, when is my life too expensive?”

Bronwyn White, living with malignant peripheral nerve sheath tumour (MPNST) sarcoma, said “Probably the only certainty with cancer is the uncertainty.”

That uncertainty can take many forms. It can mean not knowing how the disease will respond to the next treatment or what happens when the current option stops working.

“I think, can I actually afford to live?” White reflected. “Which is just an insane question to be asking. We’re not asking for magical herbs and berries. We’re asking for access to treatments that have already been proven and approved.”

Sarah McGoram OAM, patient advocate and President of Patient Voice Initiative (PVI), captured the human cost of bureaucratic delays.

“What number do you put on your life? How much does a life cost? How much is too much? These are excruciating conversations to have,” she said.

And in the room at Parliament House, those stories were being heard at the highest levels of government.

Federal Health Minister Mark Butler was accompanied by Katy Gallagher, Minister for Finance, a presence described as rare, as these deeply personal and heart-wrenching patient conversations unfolded.

“These stories really matter,” Minister Butler said. The more patients and advocates can “grab a microphone and tell them in a crowded, contested environment”, the harder those stories become to ignore.

But recognition of the problem sits alongside a length policy reform process.

Minister Butler acknowledged the importance of getting new therapies onto the PBS “as quickly as possible”, but quickly side-stepped “the complexities of the Health Technology Assessment (HTA) Review”, instead pointing to the recent pan-tumour listings of immunotherapies from Bristol Myers Squibb (BMS) and MSD following a decade-long advocacy campaign.

Anne Ruston, Shadow Health Minister, described her frustration with what she called the “slowness of the response to the HTA Review”, likening the situation to Groundhog Day.

“We need to be more ambitious in terms of being able to get Australian patients who have been diagnosed with cancer the treatments that they rightly deserve sooner at a cheaper price,” she said.

Dr Richard Denniss, Co-CEO of The Australia Institute, put that tension in stark economic terms. Australia, he argued, is one of the richest countries in the world, with a GDP roughly comparable to Russia’s and the world’s 13th-largest economy.

“We’re rich and we choose” he said.

And those choices, he argued, become particularly sobering when considered against the health portfolio spend. The government is spending $350 billion on nuclear submarines, he noted, calling them an “investment”.

“It’s hard for me to think of something that delivers more dividends in the future than research and deployment of treatments to make people live longer, happier, healthier lives,” he emphasised.

It brought the conversation back to its most uncomfortable truth. The issue is not simply whether Australia has the financial means. It is what the government chooses to do with tax payer funds.

For someone living between treatment cycles, waiting for the next scan, wondering whether a treatment will work, or whether they will be able to afford it, these choices are not abstract.

They are measured in time. In months. In birthdays. In family dinners and school runs. In the possibility of making plans for a future that, for now, remains uncertain.

That is the messy middle. And for people with cancer, it is where much of life is actually lived.

In reimagining healthcare across the entire patient journey, Health Industry Hub^TM is the only one-stop-hub uniting the diversity of the Pharma, MedTech, Diagnostics & Biotech sectors to inspire meaningful change.

The Health Industry Hub^TM content is copyright protected. Access is available under individual user licenses. Please click here to subscribe and visit T&Cs here.