Families of victims of the infected blood scandal have criticized the government for imposing a “death penalty” in their compensation scheme, causing them to lose hundreds of thousands of pounds.
The scheme provides payments to living victims and the families of those who have died after being infected with HIV or hepatitis as a result of being given contaminated blood products by the NHS.
More than 30,000 people in the UK were treated before 1996 infected with HIV, hepatitis C or hepatitis B – or a combination of these – and more than 3,000 victims have died.
Last month, Sir Brian Langstaff, chair of the Infected Blood Inquiry, announced that the body would finish its work on March 31, having “exercised the power that it has”.
Under the compensation scheme, each infected person is entitled to basic financial loss compensation of £12,500, plus additional financial loss compensation, which calculates the loss of income following their infection through NHS treatment.
However, for victims who died before the start of the scheme, families have been told that no future financial loss will be paid to the estate, and that the loss will be calculated only from the date of infection until death, which in many cases was a short time.
In an open letter, charities including the Haemophilia Society and Hepatitis C Trust have said this means that if a person dies in the early 1990s in the middle of their working life, it amounts to a difference of almost 50 years of financial loss.
“The current plan creates a situation where an infected person is financially penalized for dying before the government finally agrees to adequately address the infected blood scandal,” the letter reads.
“They and their heirs are being penalized for their inability to survive the government’s bad actions, the same bad actions for which compensation is paid.
“Every person infected as a result of contaminated blood deserves to be valued equally, regardless of whether they survive today or died many years ago,” said Kate Burt, executive director of the Hemophilia Society.
“The credibility of the compensation scheme rests on this principle. It is absolutely unacceptable that decades after their loss, grieving families continue to fight for fair recognition of the lives of their loved ones.”
Ami Jai Presly lost her father, Jai Brahmbhatt, in 1993; He was the same age she is now: 39 years old. The Brunel University Business Studies professor moved from Kenya to the UK in 1972 to study, but also in the hope of receiving better treatment for his haemophilia.
Jai Presly first became aware of the problem with the plan when he calculated what was owed to his father’s estate and was told the payment would only cover 16 years of financial losses.
The claim for deceased victims, he said, “is only about half the value it would have been if that person had been alive today.”
“At that moment we realized that the current framework criminalizes death,” he added. “It is unethical and wrong.“
Jai Presly’s sister Meera Pierson said: “Our family experience, our family life (mine and Ami’s entire life) has been shaped and overshadowed by the tainted blood scandal and the reality of what it meant to lose our father.
“Nothing will ever be able to compensate for the loss we suffered from the loss of my father.”
“The compensation framework is the only mechanism we have to talk about this,” Jai Presly added. “Everyone who is associated with this, whose lives have been changed by this, who has had their life taken or who has not been able to have an adult conversation with their father and never will, knows that money can never replace what has been lost.
“It’s the only thing we have, that’s why we’re here talking about financial losses.”
Rachel McGuinness’s father, Christopher Thomas, was a hemophiliac who received treatment during the 1970s and 1980s, and was diagnosed HIV positive in 1984. He died in 1990, when she was 19 years old.
“Mom had to quit her job to take care of him and I went to university at 18, but my brother was still at home at 16,” she said. “He was a young carer who helped mom and dad through those last few years. In the end he received palliative care at home and died at home, so it’s a very different life experience to what most teenagers would be going through.”
When she learned of the discrepancy in the compensation plan, she was “very surprised and really disappointed,” she said. “We have obviously waited a long time for the investigation to be carried out in the first instance, and then for the government to apologize, and then for the compensation structure to be put in place. And then it was still found to be poor and not fit for purpose.
“My mother is getting older and I think having this extra burden, another hurdle to overcome, at 77 when she lost her husband 30 years ago, is just ridiculous,” McGuinness added.
Ian Dixon has been campaigning alongside his wife, Claire, whose mother, Nora Worthington, was admitted to Macclesfield hospital as a result of a perforated ulcer in 1982, and when she received a blood transfusion, she was given contaminated blood.
“Sadly, Nora, after being infected with the HIV virus, was eventually diagnosed with a rare form of cancer,” Ian said. She was diagnosed in 1991 and died in August 1993, at only 47 years old.
At that time, HIV “There was a huge stigma attached to it,” Dixon said, “so her mother really went through hell at that time, and it was incredibly distressing for the family.”
He added: “Frankly, the way the plan has been structurally designed creates a huge disparity between those who are infected and fortunately survived and those who have paid the ultimate price.”
Had Nora been alive she would have received more than £2m, he said, but instead her estate will receive just over £1m.
“It’s not about money,” Dixon said. “It is absolutely about recognition, the people who have lost their lives. “Their lives should be valued just as those who are fortunately still with us.”
A government spokesperson said: “The victims of this scandal have suffered unspeakable wrongs and this government is committed to listening to them and working with them to ensure that justice is not only done but is reflected in the way compensation is dealt with for all.
“We are committed to making the system as fair and compassionate as possible and the government is now carefully considering the responses to the recent consultation held with the seriousness this issue deserves, and will publish its response within 12 weeks of the consultation closing date.”
