TAINTED blood victims have protested outside a Haemophilia Foundation conference in Sydney as part of a campaign for a new inquiry into how Australian blood was infected with hepatitis C decades ago.
Hunter tainted blood campaigner Charles MacKenzie and Queensland haemophilia and tainted blood victim Greg Ball led a protest questioning the Haemophilia Foundation's conference theme of "challenging the status quo".
The protests are against a backdrop of a United Kingdom Infected Blood Inquiry where inquiry chair Sir Brian Langstaff recently criticised UK health authorities for their "lack of attention" to people infected with hepatitis C in the 1970s, 1980s and early 1990s because of blood transfusions or blood products to treat haemophilia.
Sir Brian expressed disappointment about Public Health England's focus on "the risks associated with drug users" which "risks exacerbating the stigma felt by those infected through transfusion".
Mr Ball, 59, said the Haemophilia Foundation's conference theme of "challenging the status quo" did not represent his experience with the organisation, which declined Newcastle Herald requests for comment.
"They've been happy to let people believe that everyone with haemophilia would die without blood products so we should have been thanking them for keeping us alive years ago, although they gave us hepatitis C," Mr Ball said.
"I do appreciate all the medical support I've had over the years but if I only had to deal with haemophilia, and not hepatitis C, I'd still have my house. I'd still be able to work. We weren't able to get compensation and the Haemophilia Foundation hasn't been able to get us any."
Mr Ball and brother Steve, 61, were both infected with hepatitis C after treatment in the 1980s. Steve Ball has already had a liver transplant because of liver failure related to the infection. Greg Ball has had tumours removed from his liver and has been warned he will probably also need a liver transplant.
New hepatitis C treatment from 2016 that cures the infection in more than 95 per cent of cases has cleared hepatitis C for Greg Ball.
But years of living with the condition, including losing his house when he was too sick to work, left him bitter about the failure of successive Australian governments to fully acknowledge and explain how blood products came to be infected with hepatitis C after risks were known in the 1980s.
A 2013 Victorian study of 700 haemophilia patients found 219 had hepatitis C. The study found that despite many haemophilia patients having the condition for more than 20 years, with hepatitis C being a "leading cause" of death and disabilities, "data regarding treatment rates of hepatitis C in bleeding disorder patients are lacking".
"Of equal concern is the possibility that a proportion of these patients remained untested for hepatitis C," the study found.
"The Australian Red Cross estimates between 3500 and 8000 Australians were infected with hepatitis C from blood products before 1990 but the true incidence remains unknown due to the absence of a formal reporting system."
The study warned that patients with mild bleeding disorders "may not present until end-stage consequences develop".
"There is no comprehensive database which would allow us to determine definitely which patients have actually been exposed to blood products."
A 2018 study confirmed that "the current prevalence of hepatitis C among patients with bleeding disorders in Australia is unknown, including treatment uptake and outcome".
The study using data from the Australian Bleeding Disorders Registry concluded that "an ongoing challenge is to identify all potential risk patients".
Gastroenterological Society of Australia Associate Professor Simone Strasser said new treatments for hepatitis C from 2016 had cure rates of more than 95 per cent, and rates of liver cancer "have gone down considerably".
About 70,000 of an estimated 230,000 Australians with hepatitis C have so far been treated with the new drugs, the large majority injecting drug users.
In March, 2018 Haemophilia Foundation Australia president Gavin Finkelstein highlighted the lack of compensation for people infected with hepatitis C because of blood treatments decades ago, despite legal settlements for people who contracted HIV at the same time.
In 2007 and 2009 the foundation "described the burden of hepatitis C on our community members" in two reports, Mr Finkelstein said.
"That burden has remained intense in the years that have followed, and for many people in our community the burden of both hepatitis C and a bleeding disorder has been overwhelming," he said in 2018.
The foundation campaigned in 2010 for an ex gratia payment scheme for haemophiliacs infected with hepatitis C because of the high number experiencing complications, including liver cancer and cirrhosis, after decades of infection.
"We proposed a scheme that would provide financial support to people who continued to suffer from the impact of hepatitis C and in some cases for their families. Although sometimes met with sympathy we failed to get government support for such a scheme," Mr Finkelstein said.
After the Federal Government supported the introduction of the new hepatitis C cure in 2016 the foundation turned its attention to ensuring the drugs were government-funded and available to all who needed them, he said.
The foundation is currently collecting data on the specific needs of haemophiliacs with hepatitis C as they age.
Mr Ball said the years of physical and emotional strain because of hepatitis C left him angry at the lack of accountability by governments and authorities.
"I went to one of the Haemophilia Foundation's Getting Older sessions a few months ago," Mr Ball said.
"I said to them, 'Why are you worried about my needs when I'm probably not going to get old'," he said.
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