Holding Out for a Hero

Holding Out for a Hero

The advocacy and fundraising paradox of pancreatic cancer

By Cherie Dear

Pancreatic cancer faces a challenge few other diseases encounter: the very people who could be its strongest advocates for greater funding and treatments are often the least able to become them.

This could not have been clearer in late June 2026 with the cycle that played out around Jeremy Clarkson’s aggressive prostate cancer diagnosis. It made international headlines when the news was shared on his Clarkson’s Farm program. Within days, men the world over were being urged to get checked and Jeremy, who is now in remission, was described as “the world’s luckiest man”.

The impact was immediate and measurable. In the week after he went public, more than 50,000 men used prostate cancer charity Prostate Cancer UK’s online risk checker - up 640 per cent on a normal week - as is the cycle whenever a living advocate speaks out.

That arc - diagnosis, survival, a living advocate who returns again and again to the public stage - is one pancreatic cancer rarely gets to complete.

When Rob Hirst, the Midnight Oil drummer, chose to speak publicly about his pancreatic cancer, he had little time to tell his story. He did a single interview explicitly to lift awareness of a disease he said had never attracted the attention it deserved.

He died a few short months later, in January this year. At the time there was an outpouring of grief, yet as we know only too well, already the world has moved on.

It poses another question as well - most people diagnosed with pancreatic cancer are receiving a terminal diagnosis.  Is it even right to ask these people to advocate for a disease when they are grappling with their own mortality? In the words of Mark Raphael Baker - an academic and advocate who lived a public life devoted to many causes, and who died of pancreatic cancer in May 2023: “I’ve lost the will to harness my life to a cause… I can’t see beyond my kids and family. Death has become the new reality. It’s so hard to just live…”

The point is not that one disease deserves more or less attention or funding - it is that survivability itself manufactures awareness, and therefore pancreatic cancer, which so often kills before its advocates can speak twice if at all, is left without the same level of support. 

In most diseases, large survivor communities are the backbone of fundraising and awareness campaigns and events. Advocacy is powered by people who believe they have a future to fight for - who are, quite literally, fighting for their lives. 

Pancreatic cancer is so swift, the death rate so high, that it has almost no survivor community. It kills more people every year than other more high profile diseases, and is our third deadliest cancer.

The advocacy work falls instead to partners, children, siblings and parents who have lived through late diagnosis, rapid decline and devastating loss - who raise funds because they understand the disease more intimately than anyone, and because they are fiercely determined that other families be spared it. No other major cancer leans so heavily on those carrying such profound loss.

This paradox reaches well beyond awareness campaigns and into how attention and funding are allocated. Outrageously, pancreatic cancer receives less than two per cent of Australia’s total cancer research funding.

Too often - consciously or not - research investment follows visibility, volume of voice and the scale of public advocacy. In effect, diseases compete in something that can resemble a popularity contest.

Pancreatic cancer is structurally disadvantaged in that contest. It has fewer public figures able to sustain a campaign. Its patients are too unwell, too early in their illness, or too overwhelmed by survival to advocate.

If funding is shaped even in part by advocacy strength, pancreatic cancer will always be fighting uphill.

A disease should not have to win a popularity contest to receive the attention its burden demands. Public investment should be guided by impact, mortality, unmet need and the opportunity to change outcomes - not by the number of survivors left to argue for it. To do otherwise is to risk a cycle in which the deadliest diseases stay among the least resourced precisely because they are least able to advocate for themselves.

If outcomes are to change, pancreatic cancer cannot rely on those most directly affected. It needs a broader coalition - government, philanthropy, industry, researchers, clinicians and the wider community - to carry the share of voice the disease so often takes away.