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HCV in Australia "it is the Dallas Buyers Club scenario"...HCV therapy is much less expensive than HIV HAART...... "Australia is on the verge of a catastrophic death spiral from Hepatitis C"
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......."the worst possible indictment of our health system"......."because Hepatitis C is still widely perceived as a drug addicts' disease"......"I don't have fibrosis (liver scarring) yet. But you know if I wait long enough I will have."......HCC/liver cancer starts to develop & can develop before FS stage of disease
from Jules: here in the USA there are tons of patients wanting access to treatment who are being denied......in the USA HAART costs about $15,000 a year or more, so HCV therapy after the Medicaid rebate of at least 23% is 4 years of HAART. HIV HAART costs, which is lifetime therapy, after 30 years that is over $500,000 & including office visits, labs etc the cost is over $1 mill & including other medical conditions associated with having HIV the costs are more. We spend domestically in the USA $22 Billion every year on HIV & $4.5 every year on Medicare for HIV & $5 Bill every year on Medicaid for HIV.
"They are clinging on to the edge......excruciating".....
"This is a health system that can afford to treat those people"........"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,"
Australia's PBAC, Pharmacy Benefits Program, akin to Medicaid in USA, Rejects Sofosbuvir, here is their language - (08/25/14)
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http://www.abc.net.au/news/2014-10-23/rejection-of-costly-new-cure-a-death-sentence-for-hep-c-sufferer/5837484
Australia's rejection of costly new treatment sofosbuvir a 'death sentence for Hepatitis C sufferers'
By Deborah Cornwall
Updated 27 minutes agoThu 23 Oct 2014, 6:37am
sofosbuvir
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.
Those people need to be rescued. They are clinging on to the edge.
Dr Miriam Levy
"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."
Photo: Matthew McConaughey and Jared Leto in the Dallas Buyers Club. (IMDB: Anne Marie Fox)
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.
I've nursed people with Hepatitis that have gone on to die from it.
Morag Goodinson
"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."
More on this story:
· Hep C patients push for PBS listing of new drug
· Researchers claim breakthrough in tackling HIV
· Australia urged to subsidise 'revolutionary' new hepatitis C drugs
· New PBS listings offer hope to hep C patients
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