There was a time when rare cancers meant no hope—this new treatment changes that
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It's a rare disease that creeps in silently, striking without warning and leaving heartbreak in its wake.
For one NSW grandfather, an unexpected diagnosis turned his life upside down—but a new drug changed everything.
Now, this once out-of-reach treatment is finally within grasp for dozens of Australians facing the same grim prognosis.
Cheryl and Wayne Troy had no idea their lives were about to change when Wayne went to the doctor complaining of pain near his kidneys.
‘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.’
The 58-year-old grandfather was diagnosed with cholangiocarcinoma, a rare and aggressive cancer that begins in the bile ducts of the digestive system.
The cancer is difficult to detect early and often progresses quickly, making it hard to treat.
Steve Holmes from the Cholangiocarcinoma Foundation described the impact simply: ‘It ruins families.’
Each year, around 1300 Australians are diagnosed with cholangiocarcinoma.
‘One of the things about this cancer is it does spread quickly and widely,’ said Associate Professor Hao Wen Sim from St Vincent’s Hospital.
‘So the majority of patients will present with advanced, and incurable disease.’
For the last two years, Wayne has been part of a clinical trial using an oral medication called Tibsovo.
It targets a mutated enzyme found in around one in five patients and has become a lifeline for Wayne after enduring surgery, chemotherapy and trial immunotherapy.
The tablets allowed him to continue working without experiencing side-effects.
‘The last scan that was done everything was stable,’ he said.
Associate Professor Sim noted the drug’s impact: ‘About a 50 per cent reduction in the rate of death events, so quite a striking signal for this type of medication.’
Tibsovo would typically cost almost $19,000 per month.
But from this month, it is now listed on the Pharmaceutical Benefits Scheme (PBS), meaning patients will only pay $31.60 per month, or $7.70 with a concession.
Federal Health Minister Mark Butler said around 90 patients each year are expected to access the drug through the PBS.
‘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,’ he said.
Doctors welcomed the move, calling it a major step forward for a disease long neglected in cancer research and drug development.
‘They’ve got a chance to survive, a chance to build hope and build a future again,’ Holmes said.
If you found hope in the story of Tibsovo becoming more accessible, there's another breakthrough worth knowing about.
This time, it's a life-changing treatment for a rare inherited condition that has also been added to the PBS.
It’s yet another sign that access to cutting-edge medicine is finally catching up to real-world needs.
Read more: Breakthrough drug for rare disease joins the Pharmaceutical Benefits Scheme
Could this PBS listing signal a turning point for Australians living with rare and aggressive cancers?
For one NSW grandfather, an unexpected diagnosis turned his life upside down—but a new drug changed everything.
Now, this once out-of-reach treatment is finally within grasp for dozens of Australians facing the same grim prognosis.
Cheryl and Wayne Troy had no idea their lives were about to change when Wayne went to the doctor complaining of pain near his kidneys.
‘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.’
Oral treatment shows strong survival results for cancer patients. Image source: Pexels/Tima Miroshnichenko
Disclaimer: This is a stock image used for illustrative purposes only and does not depict the actual person, item, or event described.
Disclaimer: This is a stock image used for illustrative purposes only and does not depict the actual person, item, or event described.
The 58-year-old grandfather was diagnosed with cholangiocarcinoma, a rare and aggressive cancer that begins in the bile ducts of the digestive system.
The cancer is difficult to detect early and often progresses quickly, making it hard to treat.
Steve Holmes from the Cholangiocarcinoma Foundation described the impact simply: ‘It ruins families.’
Each year, around 1300 Australians are diagnosed with cholangiocarcinoma.
‘One of the things about this cancer is it does spread quickly and widely,’ said Associate Professor Hao Wen Sim from St Vincent’s Hospital.
‘So the majority of patients will present with advanced, and incurable disease.’
For the last two years, Wayne has been part of a clinical trial using an oral medication called Tibsovo.
It targets a mutated enzyme found in around one in five patients and has become a lifeline for Wayne after enduring surgery, chemotherapy and trial immunotherapy.
The tablets allowed him to continue working without experiencing side-effects.
‘The last scan that was done everything was stable,’ he said.
Associate Professor Sim noted the drug’s impact: ‘About a 50 per cent reduction in the rate of death events, so quite a striking signal for this type of medication.’
Tibsovo would typically cost almost $19,000 per month.
But from this month, it is now listed on the Pharmaceutical Benefits Scheme (PBS), meaning patients will only pay $31.60 per month, or $7.70 with a concession.
Federal Health Minister Mark Butler said around 90 patients each year are expected to access the drug through the PBS.
‘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,’ he said.
Doctors welcomed the move, calling it a major step forward for a disease long neglected in cancer research and drug development.
‘They’ve got a chance to survive, a chance to build hope and build a future again,’ Holmes said.
If you found hope in the story of Tibsovo becoming more accessible, there's another breakthrough worth knowing about.
This time, it's a life-changing treatment for a rare inherited condition that has also been added to the PBS.
It’s yet another sign that access to cutting-edge medicine is finally catching up to real-world needs.
Read more: Breakthrough drug for rare disease joins the Pharmaceutical Benefits Scheme
Could this PBS listing signal a turning point for Australians living with rare and aggressive cancers?
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