Experts report poor access to treatment for Australians with rare cancers

ABC NEWS (Australia)

Australians with rare cancers aren't getting access to fast and fair treatment. According to a new report which has declared there's a cancer lottery in Australia. The report by rare cancers Australia has found people with rare and less common cancers face lengthy delays in diagnoses, fewer treatment options and less support.

Transcript

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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