Rare cancers often require more medical support than common cancers. But government subsidies for rare cancer treatments are harder to access.
Later this week, the Pharmaceutical Benefits Advisory Committee (PBAC) – the body that recommends which drugs make the Pharmaceutical Benefit Scheme list – will meet to consider potential options on how to bring down the cost of cancer treatment drugs.
Genevieve Henchy, who lost her father to a rare cancer last year, understands there are complications the PBAC confronts, but wants the decision makers to know you can’t put a price on someone’s life. “It's just not fair and it's heartbreaking to have to go and say ‘Dad, there's a price on your life’.”
Ms. Henchy’s father, Eric Twerd, had Stage 4 terminal head and neck cancer (adenoid cystic carcinoma) and was using immunotherapy drug Keytruda to stay alive.
“I think the hardest thing is that the cancer types that have the most needs are typically cancer types that are relatively rare,” says oncologist, Dr Steven Kao. “If you have a rare cancer, then it is hard to gather enough evidence for PBAC to fund such rare type of cancer, which is desperately needed.”
Keytruda costs about $9,000 per treatment and over $100,000 a year. It’s currently subsidised under the Pharmaceuticals Benefits Scheme (PBS) for a few types of cancer – but not Mr Twerd’s. Mr Twerd had to stop treatment because it was too expensive.
“It was traumatizing to have to tell him, Dad, this is it. I've done all I can. We've done all we can,” says Ms. Henchy.
So far, the federal government has spent over half a billion dollars subsidising three immunotherapy drugs which are on the PBS.
Clincal Pharmacologist, Professor Jennifer Martin, used to sit on the PBAC and says it’s difficult weighing up the cost and benefits of such expensive medicines.
“The difficulty I think most clinicians have in that setting is that a decision is made on standard criteria, standard cost-effectiveness analysis,” says Prof. Martin. “But when we go back to our own workplace and we're dealing with somebody who has a condition where we're thinking well yes my patient might have actually benefited from this drug but the PBAC didn't actually fund it, that can be a difficult situation to be in.”
Hear the full story in the video above.
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