Just last week, an 18-year-old woman with a rare cancer was staring down the barrel of paying $7000 a month for a medicine she needs to treat her condition.
Rare Cancers Australia chair Richard Vines knows this because a clinician contacted his organisation in hopes of finding a way to alleviate the woman's costly burden.
"It's her only chance," Mr Vines told AAP.
The woman is among Australians who need a medicine that falls outside the scope of those subsidised by the government through a listing on the Pharmaceutical Benefits Scheme.
Working in the field he does, Mr Vines encounters such people every day, with some deciding against getting treatment because they can't afford it and don't wan't to bury their families in debt.
"It impacts on so many levels," he said.
Their experience resonates with some of the findings of a new survey canvassing the attitudes of Australians towards the PBS.
The vast majority (87 per cent) of Australians believe the scheme should be funded by the government, according to the Neilsen poll of 2000 people commissioned by Medicines Australia, which represents the pharmaceutical industry.
But only one in five people (22 per cent) believe the scheme provides access to the widest possible range of medicines.
Many people (82 per cent) also believe that breakthrough treatments should be added to the PBS, making them affordable, more quickly.
Medicines Australia chief executive Liz de Somer says the PBS must evolve to more easily support access to freshly discovered treatments.
"These findings show Australians want future access to breakthrough medicines," she said of the survey data.
"What is critical is to balance this innovation and affordability with the expectations of Australians."
Mr Vines believes both government and pharmaceutical industry have contributed to the delay in some medicines being listed on the PBS through lengthy price negotiations.
Aside from that, the system is largely geared towards treating the most prominent conditions, he believes.
"We should be finding ways to make this better, faster and we can't ignore the fact that you can't design a health system for common diseases, it has to be for everyone."
