There’s a radical new way to treat hepatitis C but the committee that rations Australia’s drugs spending says it’s too expensive.
An estimated quarter of a million Australians have hepatitis C. Now liver experts are saying that not subsidising the new treatment will effectively sentence up to 50,000 of them to death over the next few years.
The treatment is extremely expensive – around $70,000 a patient. But Australia is the only developed country in the world which has not agreed to subsidise it for the already seriously ill.
Deborah Cornwall with this report.
DEBORAH CORNWALL: Dr Miriam Levy wasn’t pulling any punches when she addressed 1,000 of her medical colleagues on the Gold Coast today. Australia, she said, was on the verge of a catastrophic death spiral from hepatitis C deaths.
MIRIAM LEVY: I am seeing on the blood tests absolute flashing red lights that are telling me that this patient is going to do badly in the next year. They don’t even know it yet. They still feel okay.
And then over the year what will happen is they will become jaundiced, go yellow, they will develop fluid in their belly, they may develop liver cancer. I mean it’s terrible.
Those people need to be rescued. They are clinging onto the edge.
DEBORAH CORNWALL: As director of gastroenterology at Sydney’s Liverpool Hospital, Dr Levy says a new revolutionary treatment for the disease gave medicos new hope when it was first announced several months ago.
But in contrast to every other developed country in the world, Australia’s Pharmaceutical Benefits Scheme recently refused to subsidise the cost of the new treatment.
They argued the costs were too high, and promised to review the decision in a year, when drug companies came back with a better price.
MIRIAM LEVY: I think that they have not heard the message, and they don’t seem to get that this is urgent.
This is a health system that can afford to treat those people.
When their liver fails, that’s it, and there’s only 50 liver transplants done a year. We can’t rescue them all with liver transplants. And once they get a liver cancer, then they’re really done for, a lot of them.
DEBORAH CORNWALL: Dr Levy says 20 per cent of hepatitis C patients now face liver failure from the virus, and can’t afford to wait that long.
She is so alarmed by the decision, she’s even contemplated setting up an illegal Dallas Buyers Club system – a black market supply chain that flourished at the height of the AIDs virus, when HIV sufferers in America were forced to rely on life saving treatments which were being smuggled over the border from Mexico.
MIRIAM LEVY: You know, if I could, without going to jail, I would fill my suitcase and come home and give them to patients because I know that the patients cannot wait a year or two.
That subgroup with advanced liver disease, it’s cruel, it’s cruel to see them in clinic and know that they are stuck and they are desperate. For them, that’s the Dallas Buyers Club scenario.
DEBORAH CORNWALL: Morag Goodinson is a nurse practitioner who only discovered she had the virus three years ago.
After years of caring for patients who had the disease, Morag Goodinson says the worst of it is knowing there’s now a miracle cure yet her life is not deemed important enough to be given the treatment.