Some cancer patients have suffered from systematic neglect, according to Richard Vines from Rare Cancers Australia.
This is not about money, it is about hope compassion, dignity, grace and quality of life, he told the Senate inquiry into access to cancer medicines.
According to Mr Vines, clinicians needs to be empowered to make decisions in the best interests of their patients, and they understand the disease and all its forms better than anyone.
He said that existing process needs to be more accessible to consumers, and enhanced to include more consumer input.
In terms of changes to processes, he argued for the creation of an interim access fund to support funded patient access to new cancer medicines between TGA approval and listing.
The proposal differs from the UK's Cancer Drugs Fund, Mr Vines said, which operates in parallel or "competition" with the country's PBAC and PBS equivalents.
He said that decisions regarding access to the fund should be overseen by a panel of clinical experts.
John Cannings, well-known to the sector as the Head of PwCs pharmaceutical business, appeared at the inquiry as a patient, having been diagnosed last year with inoperable lung cancer.
"There is no cure - it is terminal," he said.
Mr Cannings, who is a non-smoker, told the inquiry that less than 4 per cent of people with lung cancer have his variation, which is related to a specific gene mutation.
He said that he pays for Pfizer's XALKORI (crizotinib), which is $7,500-$8,000 per month, compared to the current PBS-listed treatment that costs around $6,000 per year.
"I am one of very few people that can afford to purchase this drug. For every one of me there are 30 who can not," he said.
XALKORI was recommended by the PBAC at its meeting last November but is yet to be listed.
Mr Cannings said that, for him, the choice of crizotinib over the current PBS-listed option was a "no-brainer".
"I don't feel like a patient. I take it orally, while the PBS-listed alternative is delivered by infusion every two-three weeks."
Mr Cannings said he is now considered "progression free". His primary tumour has shrunk 50 per cent and he has no new tumours.
"I have some control...I have some quality of life," he said. "There is no Plan B."
"We need to do better in terms of getting access," Mr Cannings said. "What we are after is a fair access scheme for people with rare cancers."
Mr Cannings said that the rules around reimbursement decisions need to be modernised so that the PBAC can consider the wider societal benefits of new medicines.
