Liver experts at a conference on the Gold Coast have been warned Australia is on the verge of a catastrophic death spiral from Hepatitis C.
Dr Miriam Levy, the director of gastroenterology at Sydney’s Liverpool Hospital, told the conference the recent decision by the Pharmaceutical Benefits Advisory Committee (PBAC) to refuse subsidies for a breakthrough treatment for Hepatitis C had effectively delivered a death sentence to up to 50,000 Australians who would die from the disease in the next few years.
“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,” Dr Levy said.
“They don’t even know it yet. They still feel OK. Then over the year they will become jaundiced, go yellow, they will develop fluid in their belly, they may develop liver cancer.
“It’s terrible. Those people need to be rescued. They are clinging on to the edge.”
Australia is the only developed country in the world that has not agreed to subsidise the new $70,000 treatment for Hepatitis C for the most seriously ill patients.
The PBAC argued the costs were too high to treat Australia’s 250,000 Hepatitis C sufferers and promised to review the decision in a year, when drug companies came back with a better price.
But Dr Levy said while 80 per cent of Australia’s sufferers can probably afford to wait a few years until cheaper treatments become available, those who were already heading towards liver failure need the treatment now.
“They don’t seem to get this is urgent. This is a health system that can afford to treat those people,” Dr Levy said.
“When the liver fails, that’s it. There’s only 50 liver transplants a year so we can’t rescue them all with liver transplants. And once they get liver cancer then they are really done for.”
‘For them it is the Dallas Buyers Club scenario’
Dr Levy said she finds the plight of many of her patients so distressing she has even contemplated setting up a Dallas Buyers Club-style black market smuggling chain that flourished at the height of the AIDs virus in the 80s when the United States Food and Drug Administration banned life-saving treatments for HIV sufferers in America.
“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 the patients cannot wait a year or two,” she said.
“It’s cruel to see them in the clinic and know that they are stuck. They are desperate. You know for them, it is the Dallas Buyers Club scenario.”
Dr Levy said she had no doubt desperate patients are already going online to try and track down the new treatment called sofosbuvir, which was “the worst possible indictment of our health system”.
“We are spending millions on health treatments to extend the lives of people with cancer, where they may just get a few more months to live, yet this new treatment prevents cancer in Hep C patients,” she said.
“How can we put these patients in this position when their lives could be saved?”
Morag Goodinson is a nurse practitioner who only discovered she had the virus three years ago.
She said the prospect of not getting access to the new treatment for at least four years was excruciating.
The message, she said, is that the Government has deemed her life not worth the cost of the treatment.
“I would like to think I would live for another 30-odd years but no doubt if I don’t get treatment I am very likely to develop liver disease and that’s not a nice prospect at all,” Ms Goodinson said.
“It’s unfathomable why we would do this in Australia. I’ve seen it. I’ve nursed people with Hepatitis that have gone on to die from it.”
Ms Goodinson believes much of the resistance to making the new treatments available sooner is that there is no real outrage in the community – largely because Hepatitis C is still widely perceived as a drug addicts’ disease.
“Clearly the people who are sick need to get the treatment first. Nobody would dispute that. However those of us are waiting how long do we have to wait?” she said.
“I don’t have fibrosis (liver scarring) yet. But you know if I wait long enough I will have.”