Cancer drug which offers rare cancer sufferers hope is listed on the PBS

It's a deadly cancer with a complicated name and for too long there've been limited treatment options for sufferers, until now.

An expensive new drug - the first of its kind for the disease - is now on the Pharmaceutical Benefits Scheme (PBS).

Cheryl and Wayne Troy are united in fighting a cancer that rocked the New South Wales farmer and his extended family.

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The 58 year-old grandfather's diagnosis came out of the blue.

"Wayne had pains in his kidney area and decided to go straight to the doctor," Cheryl said.

"His kidneys were fine but they found something they weren't sure what it was in his liver."

It was cholangiocarcinoma, a cancer that starts in the bile ducts, part of the body's digestive system.

Steve Holmes from the Cholangiocarcinoma Foundation said it is a devastating cancer.

"It ruins families," he said.

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A total of 1300 Australians are affected each year. It's silent and very difficult to treat, making it deadly.

"One of the things about this cancer is it does spread quickly and widely," Associate Professor Hao Wen Sim from St Vincent's Hospital said.

"So the majority of patients will present with advanced, and incurable disease."

For the past two years Wayne has been on a trial of an oral drug called Tibsovo.

Its been his saviour after enduring surgery, chemotherapy and trial immunotherapy.

The drug targets a mutated enzyme, a key driver, that affects one-in-five patients.

The tablets enable Wayne to continue to work without any side-effects.

"The last scan that was done everything was stable," he said.

Sim said there is "about a 50 per cent reduction in the rate of death events, so quite a striking signal for this type of medication".

The treatment costs nearly $19,000 a month but now, with it's addition on the PBS list, patients only pay $31.60 a month or $7.70 on concession.

"90 patients we think every year, will get access to this new life-saving treatment which otherwise would've cost them around $125,000 for a course of treatment," Federal Health Minister Mark Butler said.

Doctors say this has long been a neglected disease, so to have a targeted therapy widely available for the first time is a big advance.

"They've got a chance to survive, a chance to build hope and build a future again," Holmes said.

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