Australian hepatitis C patients push for access to new combination drug with 90 per cent cure rate
Australians suffering hepatitis C are pushing for access to a new drug, which when used in combination with other drugs, has a cure rate of 90 per cent.
The drug has become available in many other countries but is yet to become available in Australia.
Health lobby Hepatitis Australia is warning that, without immediate government intervention, there will be a tidal wave of life-threatening liver disease as a result of hepatitis C infections.
The president of Hepatitis New South Wales and hepatitis C patient, Warren Fahey, is one of thousands of Australians pushing for the introduction of the new drug on the Pharmaceutical Benefits Scheme (PBS).
The drug is called Sofosbuvir, also known as Sovaldi, and when used in combination with two other readily available drugs, it has a 90 per cent success rate in curing hepatitis C.
Mr Fahey was 29 when he had a car accident in 1979, which resulted in the loss of his right leg and a blood transfusion eventually led him to being diagnosed with hepatitis C.
Over the years he has tried many drugs but all had significant side effects and none have worked until now.
"I've been part of a worldwide trial that's having fantastic results," Mr Fahey said.
"This combination drug - no injections, relatively minor side effects - it's got a cure rate of about 95 per cent.
"And on next Tuesday after almost 35 years the statistics are showing that I'm going to be clear."
Mr Fahey said he had been fortunate that he had had a set of clinicians who had access to these drugs.
"Some other people may not be so fortunate in being in the right position," he said.
"And that's why it's really important that equal treatment access is a right, and restricting some of these medicines on the PBS is just plain wrong."
Costs of drug makes it inaccessible to many
The current cost of Sofosbuvir in the US is $84,000 for a full course over 12 weeks - a price that will prevent thousands of people access to the drug.
Jane Little is one such patient.
"That would be what I would be wanting to get onto. But unfortunately it's not going to happen for another five or six years, by which time I'll be 67," Ms Little said.
"So to me it makes total sense, putting this on the PBS so that people with this disease can be treated and cured."
Ms Little argued that if you compare what it costs taxpayers to deal with liver disease as opposed to putting these drugs on the PBS, it would be more cost effective to list them.
Professor Gregory Dore is head of the Viral Hepatitis Clinical Research Program at the University of New South Wales' Kirby Institute.
Professor Dore said Ms Little's view had merit but there were other considerations at play.
"If we have tens of thousands of people coming forward to access that very expensive therapy, the government's concerned that that would be a huge budgetary blowout in terms of expenditure for the Pharmaceutical Benefits Scheme," he said.
The drug has already been approved by the Therapeutic Goods Administration.
But in August it was rejected by the Pharmaceutical Benefits Advisory Committee (PBAC), who said it was because of the unacceptably high and likely underestimated cost-effectiveness and the likely budgetary impact on the PBS.
Drug company negotiating to get drug listed on PBS
The company behind the drug, Gilead, confirmed it is currently in a new round of negotiations with the PBS advisory board to get the drug listed.
Gilead declined a request for an interview but sent a statement.
"We are preparing a re-submission so it can be reconsidered at the earliest opportunity and we remain optimistic that the clinical benefits and the cost-effectiveness will be recognised," the statement said.
"Australia is one of the few developed countries in the world that has not provided subsidised access to Sofosbuvir for patients."
No one on the PBS advisory board was willing to comment while the negotiations were continuing.
But a spokeswoman for the Federal Department of Health issued a statement which said: "The Government and the Department of Health do not interfere in the independent process of the PBAC. The PBAC will accept a further application to list Sofosbuvir on the PBS at any time."
Stuart Loveday, the CEO of Hepatitis New South Wales, said he was exceptionally disappointed the drug has not yet been added to the PBS.
"Sure, they are expensive. However, please do not force people with hepatitis C to wait until they have cirrhosis of the liver, until they can access these lifesaving, life-enhancing therapies," he said.
"Because I think it's unethical to wait. And we're way behind the eight ball here."
