ACT health minister Meegan Fitzharris will lobby federal health minister Greg Hunt to reassess how the Australian government subsidises prescription drugs, as a Senate inquiry into funding for research into cancers with low survival rates continues.
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Inspired by the plight of Sarah McGoram, who has battled gastrointestinal stromal tumours for the past 20 years, Ms Fitzharris said she believed the Pharmaceutical Benefits Scheme could be changed to make it fairer for people who suffer from rare forms of cancers.
Mrs McGoram's treatments are no longer funded by the Pharmaceutical Benefits Scheme because she exhausted all drugs approved for her cancer in 2015.
There are drugs out there that can keep her cancer at bay but most are approved for more common kinds of cancer as there is a more rigorous base of evidence to back up their effectiveness.
While she can take her current drug, Regorafenib, for free under a compassionate access scheme, her next line of treatment will cost her $10,000 a month because it is only approved as a first line treatment.
When she first took that drug on 2010, it cost her $36 a month under the PBS.
Mrs McGoram wrote to the Senate inquiry, asking for the PBS framework to be reviewed so it approves drugs by the mutation they treat, rather than for a specific cancer. The committee will report back in November.
Ms Fitzharris said she would write to Mr Hunt to draw his attention to the quandary rare cancer sufferers face.
She said previous inquiries have made no difference but she hoped that the committee would hand recommendations to the government that would help alleviate the suffering of people like Mrs McGoram.
"It's that perpetual cycle of because enough people aren't sick with these types of cancers there's not enough evidence so they find themselves in this vicious cycle," Ms Fitzharris said.
"For someone like Sarah or anyone who has had cancer, they live with that their whole lives, even if they do go into remission.
"I think all the members of parliament on that committee will be hearing a lot of stories like this, they can't help be moved about it and I hope they come up with some good recommendations for changes."
