00:00A report by Rare Cancers Australia paints a picture of a system that is inequitable for
00:07Australians with rare cancers. It found that there is a cancer lottery where your survival
00:13and experience depends on things like where you live, how much money you make and what
00:18type of cancer you have. This national survey of about 2,500 people impacted by cancer found
00:25that people with rare cancers experience this inequity deeply, facing delayed diagnosis,
00:31less treatment options and also less support. Rare Cancers Australia CEO Christine Coburn
00:37said that care for Australians with rare cancers had been fragmented and said urgent action is
00:43required. Take a listen. Failure to act will simply mean that people are losing the cancer
00:49lottery in Australia and those unlucky enough to be diagnosed with rare and less common cancers
00:54find themselves in a healthcare system that just isn't fit for them. It won't help them
00:59and they won't have a better experience and it's just not good enough at this stage. We
01:04know what to do. There are a multitude of reports, reviews and recommendations that will even the
01:10playing field and it's just time to get this done. So Steph, what does the report actually
01:17call for? So this report makes several recommendations aimed at making the system fairer for patients with
01:24rare cancer. One of them is a call for the federal government to urgently remove barriers to fast and
01:30fair access to treatment, calling for medicines that are subsidised under the pharmaceutical benefits
01:35scheme for some cancers to be expanded to other cancers when there's evidence to support that.
01:41As part of this story, we spoke to Celestino Carosella and his wife Michelle. They lost their daughter Jasmine
01:47to a rare cancer when she was 22. Just days later, Celestino discovered his own rare cancer was terminal.
01:55So as he grapples with his mortality and also deals with the grief of having to bury a child, Celestino is
02:02also spending thousands of dollars on a medication that would be available under the pharmaceutical benefits
02:08scheme if his cancer was elsewhere. And he's having to dip into his superannuation. Take a listen.
02:15A lot of rare cancers tend to happen in younger people as well.
02:21Then how are young people supposed to afford it? You know, they don't have, a young person wouldn't have super.
02:27You know, someone in their 20s may not have super to access, you know, and a lot of people have to do
02:35crowdfunding to access, to get money to pay for it or their parents have to pay for it or, you know,
02:41so it's, it's just, you know, it shouldn't matter. It shouldn't matter whether you're, you know,
02:48Bill Gates or, you know, or a 20 year old student, you know, those people would have the same access,
02:56you know, it should have the same access.
02:57The government recently tabled its response to a Senate inquiry looking at making things more
03:04equitable for Australians with rare cancer and supported about two thirds of those recommendations.
03:11Separately, the federal government is working through the recommendations of a health technology
03:15assessment review, which made a raft of recommendations to streamline processes so Australians can access
03:21medicines on the PBS earlier. And health minister Mark Butler says that he will work collaboratively,
03:27with Rare Cancers Australia on this important work.
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