JAY Franklin was three when he had a blood transfusion, 18 when he discovered by chance that it infected him with hepatitis C, and 40 when he died in October waiting for an Australian Government apology to “tainted blood” victims that never came.
His mother Bertha wept for the son whose life was a battle against devastating health conditions from the minute he was born, as the newly-appointed chair of a United Kingdom judicial inquiry promised “much-needed answers” for victims and families of the tainted blood scandal, and victims pushed for a similar inquiry in Australia.
Mrs Franklin is the first to concede her son did not die because of hepatitis C. But an apology recommended after a Senate inquiry in 2004 would have acknowledged the suffering and isolation he experienced through his 20s, as the carrier of a little-known infection during a period of heightened public fear about blood-borne diseases.
“Even somebody writing him a letter saying they were sorry this had happened would have helped a long way. It would have made some difference that people recognised the wrong thing was done,” Mrs Franklin said.
On Friday Australian tainted blood campaigners Charles MacKenzie, Reverend Bill Crews and Medical Error Action Group founder Lorraine Long will launch a campaign in Sydney for a judicial inquiry into the Australian tainted blood scandal which left an unknown number of Australians, estimated in the thousands, with hepatitis C and HIV because of blood transfusions in the 1970s, 1980s and 1990s.
Victims included babies, children, women after childbirth and haemophiliacs.
“It’s the great unmentionable - how governments knew people would be infected with hepatitis C if they were given blood transfusions, but people weren’t told, and screening tests that could have been done, weren’t,” said Mr MacKenzie, who was 16 in 1989 when he received the blood transfusion that kept him alive as he battled life-threatening severe aplastic anaemia, but infected him with hepatitis C.
“Blood services were extremely aware there was a virus being transmitted to people, but they chose to do nothing about it. They just destroyed people’s lives,” Mr MacKenzie said.
The Sydney campaign launch comes only a week after the newly-appointed chair of a United Kingdom inquiry, retiring High Court Justice Brian Langstaff, said “providing infected blood and plasma products to patients truly deserves to be called a major scandal”.
United Kingdom inquiry campaigner Mark Ward arrives in Australia on Wednesday and will speak at Friday’s meeting at Ashfield Uniting Church. In 2017 British MPs told parliament there was evidence to support allegations of a “criminal cover-up” of the tainted blood scandal. Mr Ward will tell the Sydney meeting Australian victims are part of a global scandal and are entitled to the kind of judicial inquiry British Prime Minister Theresa May announced in July, 2017.
Mr MacKenzie, who was devastated after campaigning for the 2004 Senate inquiry which “built up people’s hopes but did nothing to address the tragedy of people’s lives”, said evidence of institutional wrong-doing in Australia was buried in confidential legal settlements agreed to by desperately ill tainted blood victims.
Only a judicial inquiry could investigate allegations potentially compromised blood donations from higher-risk male donors was given to patients identified as having a poor prognosis, such as haemophiliacs, in the 1980s before comprehensive blood screening tests, while blood from lower-risk female donors was given to healthier patients. An inquiry could also investigate why tainted blood victims weren’t warned of the risks; weren’t advised when infected blood donors were identified; why state health departments didn’t uniformly screen blood donations for infections once tests were available, and why blood donations were taken from infected donors despite internal warnings that donations should not be accepted.
Blood services were extremely aware there was a virus being transmitted to people, but they chose to do nothing about it. They just destroyed people’s lives.Tainted blood campaigner Charles MacKenzie
Mr MacKenzie compared thousands of Australian tainted blood victims with victims of institutional child sexual abuse who were silenced for decades until they demanded answers in public and governments were forced to respond.
“Too many tainted blood victims have been silenced by those confidential settlements,” he said.
“According to evidence at the Senate inquiry and the government’s own estimates, we have many more victims in Australia than the UK and yet our government has shown total indifference.
“In the UK and other countries they’ve taken responsibility for people like me. What is it about us that makes us so less worthy here in Australia?”
He called on federal health minister Greg Hunt to respond to complaints that the Red Cross Blood Service Lookback program had failed to locate and support tainted blood victims in the manner relied on by the government.
“There are patients who would like to have some answers and help. We’re not all combatants,” Mr MacKenzie said.
“This is actually a really significant chapter in Australia’s public health history and they just buried it.”
Reverend Bill Crews supported a family member who contracted hepatitis C after a blood transfusion but was denied compensation under a process administered by the Red Cross Blood Service.
I made a submission to the Senate inquiry years ago. They said they were going to look after people. They didn’t. They told him details about the blood donation that gave him the infection, but there’s never been a mention of sorry about this.Bertha Franklin, whose son Jay was infected with hepatitis C
“I’ve been so angry at the Red Cross because they denied so many people compensation. My anger is really deep towards the Red Cross,” Reverend Crews said.
“I had a church full of victims 20-odd years ago. Most of them are now dead. People expected to be treated with respect and dignity by governments and the institutions that allowed this to happen, and to be compensated, but what they experienced were delays and abandonment.
“There was a Senate inquiry where the recommendations haven’t been met. Some people got compensation. Some got help. Many didn’t. What got me was that people were allowed to die.”
Reverend Crews supported a judicial inquiry or royal commission after “running into a brick wall” trying to get justice for tainted blood victims.
“The lack of accountability on this issue is sickening. I do compare it to the way child sexual abuse victims were treated by the institutions that caused their abuse and the governments that didn’t respond,” he said.
Bertha Franklin was born and raised in Newcastle and has lived in Melbourne for 50 years. With son Jay she campaigned for voluntary euthanasia laws in Victoria. He died in hospital on October 31, 2017 after refusing further surgery, and when the pain of struggling most of his life with a devastating bowel condition became too much.
She remembers 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 still a toddler undergoing major surgery.
“It was awful for Jay when he found he had hepatitis C by mistake after a routine test. It made him frightened about having sex with people. It made him frightened about just normal everyday contact,” she said.
“I made a submission to the Senate inquiry years ago. They said they were going to look after people. They didn’t. They told him details about the blood donation that gave him the infection, but there’s never been a mention of sorry about this.”
Federal minister responsible for the National Blood Authority, Senator Bridget McKenzie, said limitations to the Lookback program were noted in the Senate inquiry, but people who had donated or received blood between 1985 and 1991 were still able to access Lookback.
The Federal Government subsidised "breakthrough new medicines" that effectively cured hepatitis C. These medicines were the highest cost to government of all subsidised medicines, with more than 100,000 scripts costing more than $1.6 billion, Senator McKenzie said.