Glenn Wilkinson found out that he had Hepatitis C during dental work. He was told that he faced deteriorating liver disease leading to cirrhosis, liver cancer and possible death.
Glenn had the disease since 1983 when he was given a contaminated blood product called Factor VIII during a tooth extraction. He wasn’t told until 1995.
Jackie Britton was infected with Hepatitis C in 1983 following a blood transfusion after childbirth. She now has liver cirrhosis and has to have a scan every six months to check for cancer.
Jackie wasn’t diagnosed until 2011.
Michelle Tolley was infected with the disease in 1987 also after a transfusion following childbirth—but didn’t find out until November 2015.
In the mid-1990s she’d seen a TV advert warning people who had been given blood transfusions that they should visit their GP. Yet when she went and suggested she may have Hepatitis C she was told she was being “silly”.
These are just three of the thousands of people who developed serious illnesses after being treated with contaminated blood. Some 2,800 people in Britain have already died as a result of contracting Hepatitis C or HIV through blood or blood products.
British governments bought the blood cheaply from the US in the late 1970s and 1980s. They knew it was unsafe. And consecutive governments have sat on the scandal ever since in order to stop the truth from coming out.
Socialist Worker has covered the scandal and given a voice to victims for a number of years.
Now an inquiry has heard that 25,000 people may have been infected, many of whom still know nothing about it.
Michelle told Socialist Worker, “I want the truth. I want to know why this happened and I want to know who gave their consent to do that to all of us.”
It’s bad enough that governments allowed ordinary people to be treated with tainted blood. But then came the attempts to blame the victims.
“It’s not just the initial infections that need to be under the spotlight,” Jackie told Socialist Worker. “It’s about how we were treated afterwards. There are scandals inside scandals.
“I was lucky—I had no tattoos. If I had, they’d have probably told me I’d picked up the infection through that.”
Glenn described how, when he was told he had Hepatitis C, he was asked if he’d had tattoos, if he’d been “promiscuous” or if he’d taken drugs.
He told Socialist Worker, “The shifting of blame is a common theme, as is people finding that information is missing from their medical records.”
The Infected Blood Inquiry that opened last week heard that medical records were destroyed and doctored to portray victims as drug addicts or alcoholics.
Aidan O’Neill QC said many victims had described files disappearing or of having “false information” added to them.
This information suggested that it was their own behaviour that had caused them to have liver damage or to become infected with HIV.
Jackie said, “I’ve met lots of people who’ve said that large swathes of their medical records are missing.
“One friend was admitted to hospital and received blood products, but there’s no record that she was ever there.”
Glenn agreed. “We suspect there’s been a systematic move to remove key information from people’s medical records,” he said.
Lloyd Williams QC told the inquiry that one woman was accused of having multiple sexual partners or using illegal drugs when diagnosed with Hepatitis C.
She had actually contracted it from contaminated blood given to her during childbirth. Williams said the authorities had kept their “mouths shut, files closed and shredders busy” for the last three decades.
If things couldn’t get any worse, there is also evidence that people were deliberately given tainted blood in order to test its “infectivity”.
The so-called “Chimpanzee letter” was shown to the inquiry last week. Sent from the Oxford Health Authority to all Directors of Haemophilia centres, it said that initial batches of tainted blood had been “tested for infectivity by injecting them into chimpanzees”.
But it added, “It is unlikely that the manufacturers will be able to guarantee this form of quality control for all future batches. It is therefore very important to find out by studies in human beings to what extent the infectivity of the various concentrates has been reduced.”
The letter was sent in January 1982.
The inquiry heard how one consultant referred to two haemophiliac twin brothers as his “young pups”.
But far from being a term of affection, it stood for Previously Uninfected Patients.
Glenn said, “The products were known to be at risk of being infected at an early stage. Researchers were testing them on animals. But because it was expensive to buy chimpanzees, they felt it was better to test them on humans.”
Jackie said, “It was unbelievable to watch these emails coming up on the screen. To say that it would be cheaper to test the blood on people than on chimpanzees. How can you write these things?”
Many of those given tainted blood were haemophiliacs, but many weren’t. Campaigners are determined that all victims get a chance to speak out.
Some think the media has narrowly focused on haemophilic victims—and this risks limiting public anger over the scandal.
“They’ve allowed the media to cover the haemophilia angle because if you don’t have haemophilia you can empathise but it won’t affect you,” said Jackie. “But lots of people infected didn’t have haemophilia.
“When people hear that, they know that any ordinary member of the public could say, that could affect my family.”
Glenn added, “The danger is that people will think, it’s terrible what’s happened to haemophiliacs. But there’s a larger story to be told here and it’s relevant to the general population.”
Victims and their families have waited decades for a thorough inquiry into the scandal. In the meantime people have continued to die. Now those affected want the truth to come out—and for all those responsible to be held to account.
Jackie said, “This isn’t just about the people who were in government at the time. I believe that every prime minister since the late 1970s should be brought to stand and answer questions.
“They could’ve done something about this sooner. By their silence they have allowed this to continue. More people have died and they’ve allowed that to happen.”
“This is our last chance,” said Glenn. “We must get to the truth. No stone must be left unturned.”
How the state is still trying to cover up the scandal
The Tories are conspiring to withhold key documents from the Infected Blood Inquiry, Steven Snowden QC told the inquiry as it opened last week.
Snowden said campaigner Jason Evans had applied for files from the Treasury and Cabinet Office.
His father died as a result of being given infected blood. Jason eventually obtained a list of documents which included a 1991 Treasury file dealing with health risks to haemophiliacs.
But the department said it would be too expensive to release the file. When he asked for the release of communications between departments regarding his original request “he got 30 pages of emails between the Cabinet Office and Treasury discussing how to respond”.
Snowden added that NHS trusts are “destroying individual records”.
Snowden is instructed by Collins Solicitors, which has accused the government of reneging on promises to pay victims’ legal costs.
Des Collins, a senior partner at the firm said the government’s refusal to release documents “can only be described as collusion”.
“It is outrageous, but sadly unexpected,” he said. “How can those affected by this tragedy trust anyone if it looks as if the dice are rigged from the start?”
The Scottish government has refused to be a core participant in the inquiry. Victims have accused it of “cowardice”. And the Department of Health may use “legal privilege” to keep some information secret.
Glenn said, “You have to wonder why they would want to do that at this stage. Using legal privilege means certain things could be withheld. If that happens, we will be left thinking that things have been covered up.”
David Lock QC said that private papers of former Labour health secretary Sir David Owen may be among the documents destroyed by civil servants.
Owen had put aside money so that Britain could become self-sufficient in blood and blood products. When the Tories later came to office, the money disappeared.
As Glenn explained, “Labour lost an election and Kenneth Clarke became health minister. Nobody knows what happened to all that money—we want to know where it went.
“And when David Owen tried to recover his papers relating to it, they’d gone missing. It really does stink.”
Lock said civil servants may have “deliberately destroyed documents to draw a line under the disaster”.
Inquiry hears from victims and families
The inquiry began by hearing some testimonies from victims. One woman was infected with HIV from her husband, who had been given contaminated blood.
“This was the mid-1980s and the climate of fear, discrimination and stigma associated with HIV and Aids was horrendous,” she said. “We coped the best we could. We were silenced, and we kept quiet.”
Steve Dymond was given contaminated blood in the mid?1980s but was only diagnosed with Hep C in the 1990s. He said victims had been “betrayed and lied to,” and accused the authorities of trying to avoid responsibility.
Lloyd Williams QC said, “One should not underestimate the sheer anger felt by the victims. Their feelings are as raw today as they have ever been.”
Williams described a 17 year old boy being told he had HIV but not to tell anyone due to the stigma. “He was told he had about 18 months to live,” said Williams. “He regarded it as a death sentence. He had a nervous breakdown and was admitted to a psychiatric hospital.”
Williams told the court in his opening speech, “The victims want their stories heard, and what appalling stories they have to tell. They are the wholly innocent victims of catastrophic failures.”
He added that victims have had to fight hard “for everything, including treatment and financial support”.
Jackie agreed. “I had to fight tooth and nail for all of my treatments,” she told Socialist Worker. “Every year I have to apply for costs to cover my prescription charges. It adds to the stress.”