ANGRY Australian tainted blood victims say a British inquiry's criticism of health authorities has shone a light on discrimination against Australians, including some in the Hunter, struggling with the long-term impacts of hepatitis C after medical treatment decades ago.
United Kingdom Infected Blood Inquiry chair Sir Brian Langstaff expressed disappointment about Public Health England's focus "on the risks associated with drug users" and the lack of attention given to people infected with hepatitis C after blood transfusions, in a letter to British health authorities in September.
"This approach risks perpetuating the failure to identify, test and diagnose people infected through transfusions. It also risks exacerbating the stigma felt by those infected through transfusion," Sir Brian said in a letter applauded by leading Australian tainted blood campaigners, Charles MacKenzie of Lake Macquarie, and Uniting Church Reverend Bill Crews.
"It's a national disgrace in Australia that in the determination not to discriminate against drug users who contracted hepatitis C governments discriminated against a smaller group who have been much more at risk of not even knowing they have hepatitis C," said Reverend Crews.
He became a leading voice for tainted blood victims after a close relative was infected with hepatitis C because of a blood transfusion during childbirth in the 1980s, and the infection was passed on to the child. Mother and child were unaware of the infection until years later, and after years of unexplained serious symptoms.
"An enormous amount of injury would have been prevented if governments and others responsible hadn't worried so much about opening the Pandora's box of people making legal claims," Reverend Crews said.
Mr MacKenzie, of Dora Creek, contracted hepatitis C as a child after a blood transfusion during surgery in the 1980s. Sir Brian's comments reflected badly on years of "appalling silences" by Australian authorities while people died, he said.
The downplaying, or public silence, in Australia about people infected through medical procedures included the failure to acknowledge the group during a prominent hepatitis C television campaign in the 1990s; government failure to act on a 2004 Senate inquiry recommendation for a formal apology and targeted support, and the Australian Hepatitis Council's rejection of ex-gratia payments for people infected with hepatitis C because of blood transfusions or blood products.
The silence includes Federal and NSW governments' failure to respond to Newcastle Herald questions about Sir Brian Langstaff's comments and whether the same criticism could be levelled at Australian authorities, Mr MacKenzie said.
"I wrote to Scott Morrison after he talked about the 'quiet Australians' who elected him and said there's a group of Australians who've been silenced by years of discrimination against them. He didn't respond to my letter," said Mr MacKenzie.
While government-funded Hepatitis Australia and Hepatitis NSW acknowledge people infected through blood transfusions on their websites, the focus is for the majority of people infected by sharing or reusing other people's needles, syringes and drug-injecting equipment.
Hepatitis NSW head Stuart Loveday, who told the 2004 Senate inquiry into the tainted blood scandal that his organisation did not support ex gratia payments for people infected with hepatitis C after blood transfusions, last week rejected any connection between Sir Brian's comments and the treatment of Australia's tainted blood victims.
"Hepatitis NSW has always been there for everybody," Mr Loveday said.
He confirmed Hepatitis Australia and Hepatitis NSW "did not do any specific advocacy" to ensure federal and state governments responded to a Senate inquiry recommendation for a formal apology to thousands of Australians, including people with haemophilia, infected with hepatitis C because of blood transfusions and blood products.
This was despite the Australian Red Cross Blood Service offering an apology to the "tainted blood" group during a mediation session in 2004 as part of the Senate inquiry process, after evidence a test that would have reduced the number of hepatitis C cases was available at least two years before specific hepatitis C testing was introduced in February, 1990.
The peak Australian hepatitis groups also did not push governments for a committee specifically for post-transfusion hepatitis C sufferers, as recommended by the Senate inquiry, with a fund to ensure "appropriate medical, counselling and welfare services sensitive to the needs of people who have acquired hepatitis C through blood and blood products". The committee was not established.
"With the situation facing all people with hepatitis C we preferred all, and limited, resources to get sufficient support for everyone, rather than distinguishing between the way people were infected," Mr Loveday said last week.
Former British Prime Minister Teresa May established the United Kingdom Infected Blood Inquiry in July, 2017 to investigate how thousands became infected with hepatitis C and AIDS-related conditions, and an alleged cover-up.
Inquiry hearings will resume on October 8 after evidence of appalling treatment of tainted blood victims. Inquiry chair Sir Brian Langstaff has strongly criticised British government responses to victims "which suggest the heart of those administering the scheme wasn't where it should have been".
The Australian Senate inquiry in 2004 acknowledged "many disturbing incidents of discrimination" against tainted blood victims, with the "most distressing... those that had taken place in health care settings". But Mr MacKenzie, Reverend Crews and tainted blood victims disappointed by the lack of action in Australia say it's time for a new inquiry here.
Queensland man Greg Ball, 59, and brother Steve, 61, both have haemophilia and were 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.
Like most haemophilia sufferers infected with hepatitis C, they were unable to sue for compensation. Greg Ball said an ex-gratia payment might have saved his house when complications from hepatitis C forced him to stop work.
While his treatment is through the public health system and he is on a disability pension, he has had no involvement with groups receiving government funding to support people with hepatitis C, because of the focus on the majority infected through drug use.
He was angered in 2013 when the Haemophilia Foundation of Australia described its campaign for government support for tainted blood victims as "long and slow".
In an email to the foundation in September Mr Ball said it had been "tough to watch UK haemophiliacs with the same stories as ours getting justice, and yet all we get are long and slow campaigns that feel, quite frankly, more like lip service".
He asked the foundation to support his call for an Australian inquiry into how an unknown number of people were infected with hepatitis C when a surrogate test was available.
"Even the apology would have helped in 2004. You can build up a lot of anger in 15 years," Mr Ball said.
The Senate inquiry was told up to 8000 Australians were infected with hepatitis C after blood transfusions in the 1970s, 1980s and early 1990s, and 1350 haemophiliacs.
In a letter in April NSW Health Minister Brad Hazzard told Mr MacKenzie the Australian Red Cross Blood Service traced 3432 patients who had received potentially compromised blood transfusions before 2004, and 630 tested positive to hepatitis C. Another 252 people were identified as potential tainted blood victims after 2004, and 37 tested positive.
The Senate inquiry was told there were 13 reports of hepatitis C infections as a result of blood transfusions after 1995, five years after hepatitis C testing of Australian blood supplies.
Federal Health Minister Greg Hunt did not respond to Newcastle Herald questions about Sir Brian Langstaff's letter or a formal apology to Australia's tainted blood victims.
A spokesperson said Australia continued to make "significant progress in diagnosing and treating hepatitis C", including funding specific hepatitis C treatment for 74,000 people. The government estimated nearly 230,000 Australians are now living with hepatitis C, the vast majority after using drug-injecting equipment.