Title : 'If you can't find the money you're going to die', cancer patient says
link : 'If you can't find the money you're going to die', cancer patient says
'If you can't find the money you're going to die', cancer patient says
"It's just a really strange position to be in, that if you can't find the money you're going to die."
Key points:
- Mis Pittock suffers from a rare form of cancer and relies on immunotherapy drug Keytruda
- The drug is subsidised under the PBS, but only for the treatment of more common cancers
- PBS rules state drugs must be tested in clinical trials, which is difficult for rare cancers as there are less patients to test
Halouma Pittock has nothing left to sell to fund the cancer drugs that have changed her life.
"My husband sold his motorbike, and that's it. We can't sell the house," she said.
"It's family and friends. That's what we've relied on."
Ms Pittock has a very rare type of cancer called transitional cell cancer. It started in her kidney but then quickly spread all over her body.
When chemotherapy did not work her doctor tried her on what he called the ace up his sleeve — an immunotherapy drug called Keytruda, which arms her body's own immune system to fight cancer.
It worked.
"It's wonderful. It's given me a life back," she told 7.30 from her home in Mandurah, Western Australia.
But it comes at a high cost — $4,500 every three weeks for two years.
Keytruda is subsidised by the Pharmaceutical Benefit Scheme (PBS) for use in common cancers like melanoma, but not for rare cancers.
Ms Pittock's case highlights a paradox in Australia's drug regime for rare cancers. In order for a drug to be subsidised by the PBS, there needs to be clear evidence from clinical trials that the drug works and provides value for money.
"With rare cancers of course that's enormously difficult, because there aren't very many of these patients around, so to collect the data really represents a major hurdle," said Professor Jonathan Cebon, medical director of the Olivia Newton-John Cancer Research Institute (ONJCRI).
A rare cancer is one that affects six people in every 100,000.
That may not sound like many, but when added together they make up 30 per cent of all cancer cases in Australia, and account for half of all cancer deaths.
'It's enormously exciting'
Professor Cebon is leading a pioneering trial into a new way of treating rare cancers.
Instead of treating cancer based on its site of origin, such as the breast, prostate or lung, Professor Cebon's team is trialling a combination of two immunotherapy drugs on a variety of rare cancers.
The researchers are looking for genetic or cellular biomarkers which will predict whether a cancer will respond to immunotherapy regardless of where the cancer started.
The first stage of the trial, being run jointly at the ONJCRI and the Peter MacCallum Cancer Centre, has already produced very promising results with around half the 60 trial subjects having a positive response.
"It's enormously exciting, because these are diseases for which we didn't have any treatment that we knew could work," Professor Cebon said.
"And to see even half of the patients responding means that we've opened up some new opportunities for people whose disease previously hadn't got, you know, effective treatments available."
Anna Anderson says she was brought back from death's door by the drug trial.
The Melbourne mother of three had stage four gall bladder cancer, which is very rare, and was tried on chemotherapy with no effect.
However, almost immediately after joining the rare cancers immunotherapy trial she started improving.
Her tumour is now 5 per cent of its original size.
"The doctors are calling it a miracle," she told 7.30.
"It's marvellous. I don't think I would be here if not for that clinical trial."
Professor Cebon's team will begin a second phase of the drug trial soon.
'There must be a way around it'
Oncologists and advocates say the drugs subsidy approvals system is not keeping pace with rapid developments in the immunotherapy field for rare cancers.
"The problem that I have as a clinician is the inequity of the current circumstance, which is that people who could afford these drugs are not waiting," Professor John Zalcberg, co-chair of the National Oncology Alliance, said.
At the request of Health Minister Greg Hunt, the Pharmaceutical Benefits Advisory Committee (PBAC) met in August to look at options for subsidising immunotherapy drugs to treat multiple types of cancer.
To the disappointment of clinicians and patients desperate for subsidised access to life-saving drugs, it did not recommend any changes to the drug assessment framework.
The Health Department told 7.30 the Government is committed to providing affordable medicines for every Australian, and this financial year is subsidising an additional $3.8 billion worth of drugs.
It is also investing $7 million in cancer research this year through Cancer Australia, including in immunotherapy projects.
Professor Zalcberg says there are a number of ways patients with rare cancers could get faster access to immunotherapies.
"We could approve it for a limited period. We could approve it and collect the information and data. We could approve it on a basis of paying for it when it works," he said.
"There are a range of things we might think about, but I think we have to sit in a room and try to figure it out."
Halouma Pittock says change cannot come soon enough.
"For people with rare cancers it is a difficult situation, because there aren't enough of us to do the work that needs to be done," she said.
"But there must be a way around it. There's got to be."
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