Ambitious goals clash with stagnant reality: CanForum

Pharma News: In a powerful opening address at the CanForum in Canberra yesterday, Richard Vines, Founder and Chairman of Rare Cancers Australia, sets the stage for a ‘Rare Cancer Moonshot’.

“We know how to do this. We know the science. We understand the need, and like going back to the moon, we just need the courage and the determination to get there.

“I encourage you to think about what is possible and needed for the 1000s of rare cancer patients who right now have to work out how to pay for highly expensive therapies, because we haven’t yet bothered to fix the problem,” he stated.

Mark Butler MP, Federal Minister for Health, officially launched the the Rare Cancer Moonshot report, emphasising “its focus on equity, which has been at the heart of the mission of Rare Cancers Australia.”

He also acknowledged the Australian Cancer Plan and praised Professor Dorothy Keefe, CEO of Cancer Australia, noting, “Our challenge now is to deliver the plan, and this report is one of those great opportunities for stakeholders to come to Parliament and to press us to be more ambitious.”

The Rare Cancer Moonshot report aligns with many recommendations from the inquiry into ‘Equitable Access to Diagnosis and Treatment for rare and less common cancers’, which the government is currently considering.

Minister Butler added, “This report that we’re so proud to launch today will give us even more food for thought about the way in which we can deliver a meaningful response to the energy and the time that so many stakeholders put into the hearings and the submissions process for the inquiry.”

Senator Anne Ruston, Shadow Minister for Health, also voiced support for the report.

“With great interest we are waiting on the HTA review,” said Senator Ruston. “The reality is that unless we have a mechanism by which we can have early intervention, early diagnosis and access to targeted treatment, we do find ourselves in a situation where perhaps the rhetoric isn’t matching the action.”

She emphasised the broader implications of cancer diagnoses, noting the psychological impact on patients and families, particularly for younger individuals.

“Getting Australians access to support when they have a cancer diagnosis is not just clinical; we all need to do better around understanding the broader implications,” she urged.

On the topic of clinical trials, Professor David Thomas, Chief Science and Strategy Officer at Omico and Director of the Centre of Molecular Oncology at UNSW, highlighted the challenges faced where clinical trials are only being accessed by about 8% of patients.

“It’s a complicated problem. We have a healthcare system which is not designed to make clinical trials a priority, so they’re regarded as nice to have, but not essential,” Professor Thomas explained. He criticised the “segmented, siloed and incredibly inefficient” relationship between the healthcare system, researchers, and industry in advancing innovations.

He also noted, “There are people within the Health Department who are battling cancer, and they care about this as much as the people in this [CanForum] audience.

“We have put the economic model to them, and tried to specifically respect HTA. Governments have to take what they have and divide it fairly. There are so many demands and we need to respect that.”

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