When the cancer in Karen Cowley's breast spread to her spine and brain, and her current drugs weren't working any more, she decided she wasn't ready to die.
She petitioned the health minister to get her hands on a revolutionary tumour-stopping drug - one that was approved in America, but not Australia.
Her efforts were successful, eventually. She managed to convince the drug's maker to put her on a compassionate program and provide a subsidised version of the drug - but it still cost her $15,000 for only three doses. Eventually the drug was approved in Australia and given a government subsidy, but the whole process took four years - far too long, she says.
She now hopes a new startup will mean no one else has to go through that battle with the federal government to buy what they need.
The Social Medwork, a Netherlands-based organisation that has just started importing to Australia, offers patients drugs that have been approved by US and European regulators but not by Australia's Therapeutic Goods Administration.
Australian patients desperate to access new treatments for grim diagnoses often discover they can't order these drugs themselves because the products are not yet approved by Australian authorities. If they can afford it, or raise the funds, they go overseas to seek treatment, at the cost of hundreds of thousands of dollars.
While a patient can ask their doctor to prescribe treatments that have been approved by European or US regulators, importing the drugs for personal use is extremely costly and bureaucratic.
"A normal person would not even entertain it," says Ms Cowley. "Only a desperate person, like me."
She eventually convinced the drug's manufacturer to put her on a special compassionate program and import the drugs for her. But it shouldn't be that hard, she said.
The Social Medwork can legally import these drugs into Australia if the patient can persuade their doctor to write a prescription, through the TGA's personal importation scheme.
The company can import a range of high-end drugs for cancer and neurodegenerative diseases, including Parkinson's disease – but at extreme cost, and with a prominent safety caveat from the TGA.
"The system here is not a bad system. It's not the problem of the system," says social Medwork CEO Sjaak Vink.
One lung cancer drug Mr Vink sells retails for more than $24,000 for a dose of 240 tablets – plus shipping costs. Is this medicine only for the rich?
"We've had this discussion within our team, and we've decided not to judge," says Mr Vink.
"What a life should cost? I don't know. I think I prefer to put that in the hands of patient."
A 2015 government review shows Australia is significantly behind the US and Europe in the time it takes for new medicines to be approved for use.
But that's not the TGA's fault, the same review found. Drug companies typically submit new medicines to US and European regulators well before applying to sell it in Australia.
Dr Tony Bartone, vice president of the Australian Medical Association, told Fairfax he was concerned the startup would encourage patients to pressure their doctors to prescribe non-TGA-approved medicines.
"Although this is well intentioned and well principled, it really leaves the onus of safety fair and square on the shoulders of the prescribing physician, and that's a fairly powerful and overbearing responsibility - considering that it's an enormously rigorous task to determine all the safety data."
A spokesman for the TGA warned that patients using unregulated drugs were taking on significant risks.
"The TGA continually advises consumers to exercise extreme caution when purchasing medicines from overseas," the spokesman said.
But Ms Cowley says patients can't always wait for the TGA stamp of approval.
"I cannot hang about waiting for survival data [from drug trials]. So if the drug gives you a quality of life and also alleviates your symptoms, we should have it," she said.