AUDIO: Equity call on rare cancers costs

Sabra Lane: A national survey of Australians with rare cancers has found they face high costs and delayed and often inconsistent care, as the specialist reporting team's Paige Cockburn reports.

Michelle Carosella: On the Italy trip.

Celestino Carosella: Uluru.

Michelle Carosella: Uluru, yes.

Celestino Carosella: And her favourite place, Hawaii.

Michelle Carosella: Hawaii, yeah.

Paige Cockburn: Jasmine Carosella squeezed a lot of life out of her 22 years, according to her parents Celestino and Michelle.

Michelle Carosella: She wanted to make the most of every day that she could.

Celestino Carosella: She never, never once complained. She never said, why me? Why has this happened to me?

Paige Cockburn: Jasmine was diagnosed with a rare terminal cancer called rhabdomyosarcoma, which affects the skeletal muscles, at age 16. She died last December and a week later Celestino received his own terminal diagnosis for a different rare cancer.

Celestino Carosella: I used to say to people, you've got more chance of winning a Powerball than that happening.

Paige Cockburn: While mourning the death of his only child, he began facing some of the same challenges she did.

Celestino Carosella: It's not fair. It's not a fair system.

Paige Cockburn: Celestino has adrenocortical carcinoma, which is cancer of the adrenal gland. He has to pay $3,000 every three weeks to receive immunotherapy. That treatment would be covered under the pharmaceutical benefits scheme if he had a different cancer like melanoma or lung cancer. His rare cancer also means he's only eligible for one Medicare subsidised diagnostic scan.

Celestino Carosella: To have to pay $1,000 every time to know where your cancer's at, you know, that can't be right.

Paige Cockburn: Rare Cancers Australia surveyed thousands of Australians with rare or less common cancers and says it's clear the medical system doesn't put all cancer patients on a level playing field. CEO Christine Cockburn says it can favour those with more common cancers. The organisation's recommending medicines already listed on the PBS for Common Cancers are expanded to include other cancers where the evidence supports this.

Christine Cockburn: These medicines are already here and they are already being used in cancer therapies. There are a whole bunch of other cancers that will benefit when they come to the PBS and they will come, but they will come one at a time.

Paige Cockburn: Rosalie Viney is a professor of health economics at the University of Technology Sydney and a former member of the Pharmaceutical Benefits Advisory Committee, which decides what goes on the PBS. She said it's all about proving a medicine is cost effective.

Rosalie Viney: And the issue with rare cancers is that we're talking about small numbers. So when there's small numbers of people, it's much harder to get the evidence quickly.

Paige Cockburn: In a statement to the ABC, Health Minister Mark Butler said the federal government had recently supported most of the recommendations from a Senate inquiry into equitable diagnosis and treatment for people with rare cancers and that the government is also considering another review which recommended ways for Australians to get faster, affordable access to medicines. Celestino says urgent action is needed. He and Michelle want to honour their daughter Jasmine.

Michelle Carosella: And Jasmine was really adamant that she wanted children in the future that end up with rhabdomyosarcoma. She wanted them to have the opportunity to live a long life. The life that she wanted to have lived.

Sabra Lane: Michelle Carosella, the mother and wife of rare cancer patients, ending that report by Paige Cockburn and Stephanie Dalzell.