Building the rare cancer expert highway

2 minute read

Professor Clare Scott wants every patient with rare cancer to have a real shot at accessing the best treatment.

The principal investigator for the Australian Rare Cancer Portal, Professor Clare Scott, has won an achievement award at MOGA’s ASM. 

The award was presented in recognition of her involvement in many practice-changing clinical trials that have made a meaningful difference to cancer patients around the world. 

One stand-out achievement was the launch of the Australian Rare Cancer (ACR) Portal in January 2020. 

This portal aids in the treatment and management of patients who have been diagnosed with rare cancers.

“Rare cancers often require a more deep or lengthy consultation,” Professor Scott told Oncology Republic. “Busy regional doctors often just don’t have the capacity. That is where we can help.”

The portal provides cancer specialists with targeted advice about guidelines, management, treatment, molecular test interpretation, molecular screening and research. 

Clinician questions about treatment pathways can be answered by a member of the ACR portal team, which includes a genetic counselor. 

The portal provides access to a formal second opinion, with advice coming from national or international experts, depending on the rarity of the case. 

If the patient consents, their data and cancer tissue can be used in further research, which may involve whole genome sequencing.

By offering the service virtually, the portal is accessible to more regional Australians. 

The ACR portal can also help patients with cancer access high-cost drugs.

“Australians with rare cancers have received a raw deal,” said Professor Scott said in her Cancer Achievement Award acceptance speech at the Medical Oncology Group of Australia (MOGA) conference

She described pathways for rare cancer patients as treacherous, with red tape making cancer patients ineligible for readily available drugs that could treat their illness.

Of the first 100 cancers that underwent whole genome sequencing through Professor Scott’s Rare Cancer Program, around half could be treated with drugs that were readily available at Peter MacCallum Cancer Centre – and another 15-20% had potential matches to drugs available outside Australia.

“What’s the catch?” she asked. “The drug for 50% of patients is available at my hospital but many patients are not allowed to access it.”

That’s where the ARC Portal comes into play. By centralising cases and creating an economy of scale to change agendas and open pathways to clinical trials, more patients could access treatment, she said.  

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