A LEADING campaigner for the United Kingdom Infected Blood Inquiry that starts public hearings this week has supported Australians, including Hunter man and Tainted Blood Group founder Charles MacKenzie, fighting for a similar inquiry in Australia.
The founder of UK haemophilia group Factor 8, Jason Evans, whose father died in 1993 after receiving contaminated blood products, said the transmission of hepatitis C and HIV from blood donations in the 1980s and very early 1990s was "a disaster waiting to happen" which each country had to address.
"There has been a refusal by governments in this country and others to accept liability and come clean, leaving victims and their families forced to use whatever legal and political tools are available to get truth and justice," Mr Evans said.
The UK inquiry, established in 2017 and expected to run for at least two years, will examine why people were given infected blood products, how authorities responded, the nature of support, questions of consent and whether there was a cover-up. Documents released last month showed UK health departments decades ago secretly admitted responsibility for thousands of haemophiliacs becoming infected with HIV and hepatitis C because of imported American blood products, but successive UK governments have denied wrong-doing.
Health figures show that by April, 1992 nearly 20 per cent of Australia's 1570 haemophiliacs were diagnosed with HIV and 55 people had already died despite Australia not importing blood-clotting products from America.
An unknown number of Australians have died of hepatitis C-related conditions contracted from blood products, or are living with hepatitis C. Mr MacKenzie and fellow campaigner Reverend Bill Crews have disputed a Red Cross estimate of 8000 affected people to a 2004 Senate inquiry, or a recent NSW Government estimate of just 200 cases of undiagnosed hepatitis C from blood products in Australia.
"A woman in her early 30s has just discovered she has had hepatitis C her whole life. Her mother received contaminated blood in a transfusion after giving birth to an older child but didn't find out for many years. It's moved to the next generation. They can't say how many people are affected, how many have hepatitis C and don't know, and it's disgraceful," Reverend Crews said.
Kurri Kurri woman Pat Hastedt said her late husband Neville died of motor neurone disease in 2008, but the years of treatment for hepatitis C after transfusions in 1984 were physically, emotionally and financially draining.
"I just took it on my shoulders. I had to," Mrs Hastedt said.
"He had to go to Sydney for treatment and we stayed in the cheapest of hotels because we just didn't have the money. We were told 'Don't even bother about legal action because you won't get anywhere'.
"I was a blood donor all my life and I believed in it, but after his diagnosis they would always test my blood, and I know I was clear, but when the Red Cross asks for a donation now I say 'No thanks'.
"The Red Cross never did anything, not even when he died. I know they do a lot of good in some areas, but not on this."
Victorian woman Sue Bell contracted hepatitis C after a blood transfusion in a public hospital in August, 1991 following the birth of her child. The contaminated transfusion occurred 18 months after screening tests for hepatitis C were introduced across Australia.
Ms Bell was not told until March, 1993 when her doctor rang to say the Red Cross had contacted him. Her blood donor had hepatitis C from a tattoo.
"I was 29. I had Crohn's disease (an inflammatory bowel disease) but I was active. The Red Cross had no contact with me at all. Nothing. I complained to the hospital but their view was that without the transfusion I would have died, which is the case. I saw lawyers but I couldn't afford to do anything so I never did," Ms Bell said.
More than a decade ago she was required to have Interferon, a kind of chemotherapy and a treatment available for some forms of hepatitis C, after showing signs of liver damage related to the Crohn's disease.
"It was a revolting six to eight months. I used to have to go to the hospital. I couldn't tell you how much it's cost me but I was lucky. It did clear the hepatitis C," she said.
While governments, health authorities and the Red Cross have argued against compensation schemes because reliable testing for hepatitis C was not available in the 1980s - although surrogate tests were known about from 1983 - Ms Bell said her case showed those responsible refused to accept responsibility.
"I just feel let down that nobody's actually communicated with me. I really just wanted an apology, and probably someone to cover the costs of what I've had to go through. But maybe they were scared to ring me or send me a note. If they'd asked 'What can we do to help?' I might have answered.
"I'm sort of outraged by a system that allows you to be forgotten. I'm angry that the people responsible for this don't do anything for those left to deal with the consequences."
Alan Wilson, 84, of Gerrigong, contracted hepatitis C during blood transfusions in 1981 but did not know he had the condition until 1991 during a routine blood test for minor surgery. Two years ago he was cleared of the condition after treatment under a Federal Government $1 billion program for 230,000 Australians with hepatitis C, the majority from injecting drug use.
After living with hepatitis C for more than 30 years Mr Wilson has liver damage and is at risk of liver cancer.
"It was a worry when they told me I had it. I tried to put it at the back of my mind but it was a big upset for my wife. I don't know whether anyone actually gave me an explanation of how it happened. I did go back to the hospital and complained about it but they said if they hadn't transfused me I likely would have died and that was it. It was 'See you. Have a good life' and that was that. It was only by accident I was watching television and I found out about these new drugs so I went to my doctor," Mr Wilson said.
As early as 1995 a Federal report warned that processes to find people who had contracted hepatitis C because of contaminated blood were insufficient. A 2004 Senate inquiry repeated the call for greater attempts to locate infected Australians.
While former federal Health Minister Sussan Ley assured Medical Error Action Group founder Lorraine Long that the Red Cross Lookback program for finding tainted blood victims was being reformed, Ms Long was highly critical of government actions in a letter to current Health Minister Greg Hunt.
The Senate inquiry also recommended a formal apology from the Federal Government to victims of the tainted blood scandal, but health ministers have repeatedly declined to respond.
Mr MacKenzie said many haemophiliacs living with the condition were struggling financially and health conditions prevented some tainted blood victims, including Mr MacKenzie, from using better and more targeted drugs which can clear hepatitis C.
While Ireland, Canada, the United Kingdom and New Zealand have made ex gratia payments to contaminated blood victims, the Senate inquiry added insult to injury for Australian victims by rejecting a compensation scheme.
UK campaigner Tony Farrugia, who was 14 when his haemophilic father died of AIDS from contaminated blood products, followed by two uncles who also contracted AIDS because of contaminated haemophilia treatment, supported Mr MacKenzie's demand for an Australian inquiry.
"The UK Government has consistently lied to scare the general public into thinking this is too expensive to sort out but we have to remain optimistic the truth will come out," Mr Farrugia said.
"The Australian Government should hang its head in shame for the lack of support it's given to people infected with these conditions through the health system. There is a support scheme in the UK. It's far from perfect, but people shouldn't have to fight for support.
"I hope Australia follows the UK in setting up a full public inquiry as soon as possible."