GLENN Johnston doesn’t have the letters from the Australian Government and the Australian Red Cross telling him his life was probably shortened by blood transfusions he was given in the 1980s that infected him with hepatitis C.
But he is still outraged by the memory of being advised there were no records showing he’d received any transfusions, despite emergency trips to seven hospitals over the years to treat his mild form of haemophilia.
“They said records at two of the hospitals were lost because of fire. They had no records that I’d been to the others,” Mr Johnston, 48, said.
“I’m disgusted with the whole thing. It’s shattering. It’s like they’ve wiped the slate clean before I had a chance to have a crack at them. I didn’t think Australia was like that.”
Mr Johnston is one of thousands of Australians infected by hepatitis C during the 1980s and early 1990s because of blood transfusions or haemophilia treatment. It was a period when state and federal blood authorities, including the Red Cross, responded slowly to concerns about the serious long-term impacts of hepatitis C, including liver failure, cancer and cirrhosis, despite American authorities initiating surrogate screening in 1987.
I’m disgusted with the whole thing. It’s shattering. I didn’t think Australia was like that.- Tainted blood victim Glenn Johnston.
Tainted blood campaigners Reverend Bill Crews and Charles MacKenzie, of Lake Macquarie, believe revelations during the United Kingdom’s Infected Blood Inquiry that starts today will confirm the need for a similar judicial inquiry in Australia.
The UK inquiry, announced by Prime Minister Theresa May in 2017, will examine why men, women and children were given infected blood; the impact on their families; how authorities including government responded; the nature of any support provided following infection; questions of consent and whether there was a cover-up.
At least 2400 people died in the UK and many thousands more were exposed to hepatitis C and HIV with life-changing consequences. The inquiry headed by Sir Brian Langstaff has received more than 100,000 documents. For three days this week victims’ groups and blood authorities will make opening statements before full inquiry hearings start in March, 2019.
“The victims and their families who have suffered so much pain and hardship deserve answers as to how this could possibly have happened,” Mrs May said.
The UK inquiry will include evidence of how its blood supply was contaminated by blood sourced from inmates in United States jails. It will also hear how health services used haemophilia patients to test the efficacy of heat treatments to sterilise blood products, without the patients’ knowledge or consent.
In Australia the majority of tainted blood recipients have received no compensation, the Australian Government has failed to provide a national apology as recommended after a 2004 Senate inquiry, and an unknown number of people have died. The Red Cross has estimated 9000 Australians received tainted blood. Reverend Crews, who for decades has supported a close relative who received a tainted blood transfusion during pregnancy, and Mr MacKenzie believe the number is more like 20,000.
The victims and their families who have suffered so much pain and hardship deserve answers as to how this could possibly have happened.- British Prime Minister Theresa May announcing a UK tainted blood inquiry which starts today.
The Senate inquiry included evidence the Australian Red Cross warned itself that some donors in the 1980s were in high risk categories for transmitting diseases including hepatitis and HIV, but continued to collect blood. Red Cross documents included a warning in 1983 that a donor was “not to donate until April 1988” because of known risk factors, but continued to donate. An IV heroin user with “approximately 70 sexual partners” and another whose record in 1984 said “Do not call until August 1989”, also continued to donate blood.
The Senate was told each of these donors gave blood which infected others with hepatitis C via transfusions during surgery or as blood products for haemophiliacs. The inquiry was also told a surrogate screening test was available from 1987 but only Queensland used it. Concerns about the impact on blood supplies and the cost left other states favouring a study, but without warning the Australian community about the risk.
The Australian Government has funded a $1 billion five-year program to provide a successful treatment for hepatitis C, with studies showing it is successful in reducing infection rates in drug users and some people infected during transfusions. But Reverend Crews and Mr MacKenzie said the treatments are too little too late for many people who received infected blood several decades ago.
Mr MacKenzie, who received tainted blood in a transfusion to save his life in 1989 when he was 16, cannot use the treatment because of complications from the original infection.
Reverend Crews’ relative no longer has hepatitis C after the successful treatment but is repeatedly in hospital dealing with other serious complications after years fighting the condition. Reverend Crews is working with a UK tainted blood group headed by Mark Ward, who was infected with hepatitis C and HIV during a transfusion as a child.
“I’m incredibly angry at Federal Governments of both political persuasions who’ve behaved appallingly and abandoned people who’ve been infected with this disease through no fault of their own, and I’m incredibly angry at the Red Cross because it puts itself up as a caring organisation, but brought in the lawyers when people tried to get help,” Reverend Crews said.
“This tragedy happened because those responsible for blood supplies in Australia took a risk about hepatitis C and the risk did not work. People who trusted Australia’s blood supplies weren’t told about the risk and they weren’t compensated for the risk that was taken.
“I expect a lot to come out in the UK inquiry but I’ve had my hopes dashed too many times here in Australia. I just hope the evidence is strong and compelling enough to force some of these people in government in Australia to actually look at the issue here. I’ve been reduced to prayer, really. I pray that we finally get justice here.”
Jay Franklin was three when he had a blood transfusion in 1980 for a life-threatening bowel condition and 18 when he discovered by chance that it infected him with hepatitis C. He died in October.
This tragedy happened because those responsible for blood supplies in Australia took a risk about hepatitis C and the risk did not work.- Reverend Bill Crews.
His mother Bertha, who was born and raised in Newcastle, cried at the pain her son experienced when people assumed he contracted hepatitis C from illegal drug use rather than a tainted blood transfusion in a public hospital when he was a toddler.
A Hunter woman told the Senate inquiry of the devastation of receiving tainted frozen blood plasma in a Sydney public hospital in August, 1990 during pregnancy complications. She lost the baby at 23 weeks gestation and was not advised of the tainted plasma until a year after surgery.
“I was never given an apology from the Red Cross and after seven years of stress and litigation and thousands of dollars have not got anywhere,” the woman told the inquiry.
Mr Johnston was told he had probably been infected with hepatitis C for 30 years by the time it was picked up during tests for knee surgery. He underwent a 48-week course of treatment to get rid of the hepatitis C but was advised it had left him with long-term problems that would probably shorten his life.
“To know there’s a fair chance it’s going to knock 10 years off my life and noone’s responsible? It shouldn’t be like that in Australia,” Mr Johnston said.
In an addendum to the 2004 Senate inquiry’s final report the late Labor Senator Steve Hutchins said Queensland was the only state to introduce surrogate testing in 1987. If surrogate testing had been introduced Australia-wide the incidence of post-transfusion hepatitis C would have been reduced from 1 in 333 to 1 in 500, he concluded.
“As a statistic the difference is negligible, but the negligible difference has had a profound and sad effect on the lives of thousands of Australians,” Senator Hutchins said.
The Australian Red Cross was contacted for comment.