24 June 2016 - An experimental immunotherapy drug treatment has significantly reduced the size of a critically ill 36-year-old woman's rare neuroendocrine tumour, and eliminated her symptoms.

More than a year ago doctors gave Danielle Tindle as little as four months to live. All conventional therapies had failed and doctors referred her to palliative care.

But Dr Tindle's medical oncologist Margie McGrath decided to try, as a last resort, a combination of the immunotherapy drugs nivolumab and ipilimumab, which were having good response rates in trials for small cell lung cancer.

The program revealed that when Dr Tindle gets her immunotherapy every fortnight, it costs her nearly $5,000 a shot. In the private hospital cubicle sitting next to her could be a melanoma patient who is paying just $6.20 per treatment.

"[The melanoma patient] is receiving it at a PBS subsidised rate, while I'm paying thousands of dollars. There's no one that could look me in the eye, from any level of government, or even the drug companies, and say that's a fair situation. Something needs to change," Dr Tindle told Australian Story.

"Nobody thinks it's fair," Rare Cancers Australia chief executive officer Richard Vines said.

"It's so frustrating, the [drugs] are sitting on the shelf, the government's okayed them for one type of cancer, and not for the other."

View ABC News article