Ninety people have died as a result of receiving contaminated blood in the 1970s and 1980s since last July when the prime minister announced an independent inquiry into the scandal, HuffPost can reveal.
Labelled the “worst treatment disaster in the history of the NHS”, an inquiry into why men, women and children in the UK were given infected blood will finally begin today after decades of campaigning.
However, for many victims of the scandal, the inquiry has come too late as those battling ill health after being given contaminated products are dying all the time.
Some 2,800 are known to have died as a result. But figures shared by campaigners who have fought for justice show that 90 affected people are believed to have lost their lives even since last July, when Theresa May announced there would be a full inquiry after thousands of people were infected with HIV and hepatitis C, mostly in the 1970s and 1980s.
Campaign group Tainted Blood established through Freedom of Information requests that 72 infected people across the UK had died since the announcement of the inquiry in July last year and the naming of the chairman six months later.
Since then, Tainted Blood says it has been impossible to obtain up-to-date accurate figures as FOIs have not been answered.
However, both Tainted Blood and the Contaminated Whole Blood UK Support group for those affected by contaminated blood transfusions say that information gathered through other sources and anecdotally leads them to believe the current death toll since last July stands at 90 - with fears it might be even higher in reality.
Stigma associated with the viruses means many victims are reluctant to come forward so the plight of many is going under the radar.
The Infected Blood Inquiry, to be chaired by retired judge Sir Brian Langstaff, will examine why people were given infected blood products; the impact on their families; how the authorities responded and whether there was a cover-up.
The preliminary hearings will be a chance for core participants or their legal representatives to make opening statements about the issues in the Terms of Reference which they would like the inquiry to prioritise.
Campaigners today urged for inquiry chiefs to be mindful of the need for justice to come quickly as the death toll is rising all the time while thousands of victims have tragically not lived to see the inquiry.
“We believe 90 people have died since the announcement of the inquiry last July but I fear this may only be the tip of the iceberg and that the true figure will be even higher Su Gorman - Tainted Blood
Su Gorman from campaign group Tainted Blood whose husband Steve has endured years of ill health after being infected with hepatitis C from haemophilia treatment and almost died earlier this year, says: “For those who have been living with the consequences of contaminated blood, there is no certainty they will be alive to see the conclusion of the inquiry and the unnecessary delays have weighed heavily on people’s minds.
“By the time this inquiry is concluded - and it is thought it may take between two and four years - we fear many more people affected by this scandal will have lost their lives.”
“The death toll is rising every day and the inquiry needs to be speeded up before even more people die.
Michelle Tolley, 53, a mum-of-four who lives in Norfolk, only discovered she had been infected with hepatitis C as a result of blood transfusions given to her after childbirth less than three years ago after a diabetes check-up showed irregularities in her blood test results.
Michelle was given a blood transfusion in 1987 after haemorrhaging after giving birth to her first child Daniel and then again after having her twins Natalie and Dale in 1991.
Michelle, who will be a core participant in the inquiry without any legal representation and also runs the Contaminated Whole Blood UK support group, said:
“The thought is always there among the rest of the victims: ‘Will I still be here at the end of this inquiry?’
I personally feel like I have a death sentence hanging over me and there are thousands of others who feel the same
“We need these answers now and if people were to blame, action needs to be taken as all these people should not have died in vain.
“We want justice for everyone and closure for the people and families affected by this scandal.”
Andy Burnham, Greater Manchester Mayor and former health secretary is one of the politicians who fought for the Government to hold an inquiry into the infected blood scandal.
“I think the public don’t yet understand the full scale of this injustice and when they do, they will be shocked at how the people affected were let down and support them wholeheartedly,” he said.
Diana Johnson, Labour MP for Hull North, has been calling for justice for victims of the contaminated blood scandal and be in will be in London today for the opening of the inquiry.
She said: “It has taken far too long for the State to recognise the harm this scandal did to a group of people - mainly haemophiliacs but also people who received blood transfusions for things like childbirth or after dental treatment.
“The State needs to have this inquiry into how and why this happened and for lessons to be learned.”