Infected in the UK

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The state infected them with HIV and hepatitis C: Now the victims finally get certainty in one of the biggest scandals ever in the UK


In the United Kingdom, more than 30,000 people were infected with HIV and hepatitis C by the public health service in the 1970s and 1980s.







Matthew Merry (left) is injected with the blood product Factor 8 by a doctor. Merry was infected with HIV and hepatitis as a child, and today, at the age of 50, he will find out who was responsible. © ( PRIVATE PHOTO)

OF

DR's correspondent in the UK Tinne Hjersing Knudsen

Staten inficerede dem med hiv og hepatitis C: Nu far ofrene endelig vished i en af de storste skandaler nogensinde i Storbritannien | Udland | DR


Matthew Merry was just 12 years old when his parents gave him a message across the dining room table that would change his life forever.

He already knew that he was different from his peers of the same age. He suffered from haemophilia, a disease in which the blood does not clot, so he was often ill and often had to stay home from school.

Hospital visits were routine, where he was injected with the clotting agent that haemophilia patients lack in their blood. The treatment he had received from the age of two was supposed to help him have as normal a childhood as possible.

But now his mother and father looked him in the eye and told him that the treatment could end up killing him.

- We didn't tell anyone at all. It was a family secret for over 30 years.

MATTHEW MERRY

The little boy had been injected with contaminated blood into his veins, and now he had tested positive for HIV.

- To be honest, I don't remember much from the conversation. I was numb. It was only in the following days that I became really upset, says Matthew Merry.

He was far from the only one who received such a message.

Family secret for over 30 years


In the 1970s and 1980s, at least 30,000 Britons were infected with HIV and hepatitis C through blood products they received during treatment in the public health service. Around 3,000 of them have – so far – lost their lives.

The scandal is known as the worst ever in the history of the health care system, and only today can it finally be put to an end.

This afternoon, the conclusions of a six-year investigation into the scandal will be released by a commission of inquiry that was set up in 2017.

It's a day that Matthew Merry has been waiting for for decades.

It was in 1985 that he received the news about HIV from his parents. At that time, the AIDS epidemic was at its peak, and as little insight there was into the disease, just as great was the fear of it. Therefore, no one was allowed to know that the little boy was infected.

- We didn't tell anyone at all. It was a family secret for over 30 years. It was extremely lonely to carry around, he says.

Infected blood came from the United States


The scandal stems from an otherwise hopeful treatment. In the 1970s, a method was developed to produce the coagulant that haemophilia patients lack in their blood, Factor 8.

It stopped bleeding quickly and effectively and could even be given by the patients themselves by injection.

But it was made by mixing plasma from many thousands of donors in one large container. If just one of them carried the virus in their blood, all products extracted from the large vessel would be contaminated.

The largest producers of Factor 8 were located in the United States, where people were paid to donate blood. This meant that many donors were prison inmates, drug addicts and prostitutes, who were at greater risk of having HIV and hepatitis C.

The doctors knew about the risk, but assessed that the benefits of the new type of treatment were greater. Several top politicians believed that Britain should avoid the American products, but because the British could not supply enough blood themselves, the import of the American products continued for years. Otherwise, the treatment of hemophilia would collapse.

Even after the first case of HIV infection through American factor 8 was found in a patient in 1983, the import continued right up until the early 1990s.

But it was not only the American products that carried the infection. The deadly viruses were also found in blood donated in the UK.

A stopwatch hanging over your head


HIV infection quickly came to dominate Matthew Merry's life.

- It was a death sentence back then. So I lived as a teenager with this in the back of my mind all the time that I might only have a few years left of my life. It was like having a stopwatch hanging over your head and waiting for someone to press the button," he says.

The stopwatch made Matthew Merry careless with life. He failed his final exam and took drugs in the 1990s rave scene. There was no reason to care about tomorrow when it might not exist.





Matthew Merry lived a wild adolescent life, as he thought he was going to die early. Today, however, he tries to live a healthy life. ©
It wasn't until he was in his early twenties that he began to believe that he would survive, and then he pulled himself together. He got an education, a career and later a family.

Today, he is 50 years old and may finally see someone – doctors, civil servants and politicians – being held accountable for the scandal.

- They lied. They knew it was happening. They let us get infected. They didn't tell my parents about it, they didn't advise them about the risks. And when they were told that I had contracted HIV, the expectation was that they would pull themselves together and move on, says Matthew Merry.

To make matters worse, doctors discovered ten years later that he had also been infected with hepatitis C by the treatments. The doctors had injected two deadly viruses into his body.

Still, he says that he is one of the lucky ones – because he is still alive.

- It's heartbreaking. So many of them didn't make it, not all of them were as lucky as me, he says.

Infected by a small portion of Factor 8


One of those who had to pay with his life for the treatment was Rachael Austen's father.

He suffered from a mild degree of haemophilia and was given a small portion of Factor 8 in connection with a simple dental treatment. He was not in routine treatment for his haemophilia.

But when he drove from the clinic, he had unknowingly become infected with hepatitis C.

- It took 17 years before he was called into a clinic where they told him that he had hepatitis C. Suddenly it all made sense, she says.





Here Rachael Austen is seen with her father, who was infected with contaminated blood. (Photo: © PRIVATE PHOTO)
Her father's poor health dominated Rachael Austen's childhood. Hospital visits were quite common, and she remembers how, as an eight-year-old, she sat at the foot of his hospital bed while he was driven into the operating room.

- It was so normal, I was so used to him being sick. It's only when I look back on it that I realize that it wasn't," she says.

He got a new liver, and it gave him ten good years before he became terribly ill again. This time, the doctors found cancer in his body.

"They told him they couldn't treat the cancer because your liver can't handle it. And we can't do a liver transplant, because the cancer will kill you on the operating table. So it was game over, she says.

No legal settlement in the UK


Rachael Austen's father died in 2010 on his wife's birthday and two months before he was supposed to have followed his daughter down the aisle when she was to get married.

- 14 years have passed, and it still hurts. He would have been here today if this had not happened. He would have turned 80 this weekend. They took him from me, they took him away from all of us, she says.

The UK was not the only country to buy and use the virus-infected blood products from the United States. But it is the only country where the victims have not yet obtained some form of justice.

In both France and Japan, those responsible were prosecuted and imprisoned several decades ago. As early as 1989, the British Association of Haemophilia Patients demanded compensation for victims and survivors. Around 1,200 people were paid a lump sum of the equivalent of approximately DKK 175,000.

But this happened without the state taking any kind of responsibility for what the victims were exposed to. The government took great care that they were not held accountable and that the money was not called a replacement.




Rachael Austen hopes that the day can do her late father some justice by having someone take responsibility for the blood scandal. © ( PRIVATE PHOTO)
Today, it is the lack of guilt and responsibility that makes Rachael Austen the most angry.

- I do not understand how so much dishonesty can take place and so many people can lose their lives without it being acknowledged. It's cruel that we've had to wait so long for someone to raise their hand and say that what they did was wrong," she thunders.

Infected people are still being identified


It is one of the biggest scandals Britain has ever seen, and it continues to grow.

New victims are still being identified decades later, and they don't have to suffer from hemophilia. The virus-carrying blood products from the United States were used everywhere in the British healthcare system and for all types of patients.

Such a 63-year-old Brendan West turned out to be.

As a young man, he was stationed as a soldier in Germany. Here he was run over by a getaway driver, who left him dying on the side of the road. He was treated in a British military hospital and had his leg amputated. During that operation, he received a blood transfusion containing hepatitis C.

But of course he didn't know that.






Brendan West is seen here in the hospital bed with his mother by his side after his leg had been amputated. © ( PRIVATE PHOTO)
For the past 20 years, he has been inexplicably ill again and again. He has been extremely exhausted, without the doctors being able to find an explanation. He ended up finding it himself in 2020.

- During the corona pandemic, I decided to donate blood. Two days later, I got a call from a doctor who said they had found antibodies for hepatitis C, and I had to go to the doctor to be checked," says Brendan West.

He ended up with a specialist who could see from his liver that he had had the virus in his body for decades. Hepatitis C is called the silent killer because it can go unnoticed for a long time.

"At first, I didn't realize how bad the damage to the liver was and what it meant to have cirrhosis. But when the doctor made it clear, I was very, very sad. I cried alone in the car when I drove home, he says.

A year later, he asked a consultant directly how long he had left to live. Seven years, was the answer.

- It was three years ago, so I have four years left. I would like to get really drunk in an attempt to forget it all. But it would probably only bring my death closer, so I live very healthy instead, says Brendan West, who has already planned his funeral.

Clinical trials conducted on children


It is difficult to comprehend the extent of the scandal even before the Infected Blood Inquiry publishes its findings today.

For example, it is already known that several medical experiments were carried out on the contaminated blood without consent. According to documents seen by the BBC, doctors experimented with the infected products on hundreds of children over a period of 15 years.

This happened, among other things, at a special school where a large group of boys with haemophilia attended. The school had an integrated clinic that could treat the boys when needed.

But the associated physician, Anthony Aronstam, used them in clinical trials. One of his experiments involved giving boys three to four times more factor 8 than normal. This meant that the children were injected with a high concentration of infected blood.

Of the 122 students who attended the school between 1974 and 1987, 75 have so far died of HIV and hepatitis C, writes the BBC. Today, survivors say they felt like "guinea pigs" and "lab rats."

A document from the commission, which has been published in advance, shows that the government knew about the clinical trials.

Cover-up on industrial scale


These are the kinds of smoking guns the victims and the bereaved will look for when they gather in London today to see the commission's conclusions presented. They hunger for someone to be held accountable.

The commission has investigated allegations that the case was ignored and swept under the carpet by key government officials and several governments.

It was only set up in 2017 after intense political pressure when BBC Panorama uncovered how many people knew about the risks, but allowed the deadly practice to continue.

Andy Burnham, who was Labour Health Secretary from 2009-2010, has called it "a criminal cover-up on an industrial scale". Now the public will see if he is right.

This is the opinion of the chairman of the UK's interest organization for haemophilia patients, the Haemophilia Society, he has. She has seen the report in advance.

"The Commission's findings today will shock every single person in the UK who cares about the truth and accountability of our public servants," said Kate Burt.

Now it is important that the British government acts on the recommendations made by the commission.

"Too many have died believing that no prime minister would ever take responsibility for what happened to them.

Billions in compensation


Already yesterday, British Chancellor of the Exchequer Jeremy Hunt was in the media to show decisiveness.

This week, he and the government will unveil a large compensation package for the victims and their relatives.

It is expected to be the equivalent of at least 85 billion kroner, and according to Jeremy Hunt, the payments will be made "as soon as possible".

"It's the worst scandal of my lifetime. I believe that families have every right to be unimaginably angry that generations of politicians, including myself when I was health minister, have not acted quickly enough to address the scandal," he told the Sunday Times.

The finance minister adds that now is the time for justice.

Matthew Merry couldn't agree more. The fact that it has taken so many years to get here is yet another failure, he believes.

- Injustice upon injustice. It fuels your anger and frustrations. Because throughout all these years, they have refused to acknowledge what they did. If they had fixed this in the 1990s, it would have been so much better for everyone. But no, they decided to delay the process, and in my opinion, it was because they wanted to wait for people to die and the problem would go away," he says.

Compensation is central, but not most important.

- The most important thing is that they stand up and say - yes, it was us who did it, he concludes.

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Analysis: Documents were destroyed to hide the truth about contaminated blood


A comprehensive study of how 30,000 Britons were infected with deadly viruses in the public health system for years will shock the British.







Now it is up to Prime Minister Rishi Sunak to heal the open wounds that victims and bereaved have carried around for decades. (Photo: © TOLGA AKMEN, Ritzau Scanpix)

BY DR NEWSCORRESPONDENT IN THE UK

Tinne Hjersing Knudsen
Analyse: Dokumenter blev destrueret for at skjule sandheden om kontamineret blod | Udland | DR


Unlike other national tragedies, there is no specific date to which the contaminated blood scandal in Britain is associated.

Over the course of two decades, thousands of people were continuously infected with the deadly viruses HIV and hepatitis C through blood products they received during treatment in the public health service.

But perhaps 20 May 2024 will be the day that the British will remember.

A comprehensive commission of inquiry has published a heartbreaking report concluding that the scandal could and should have been avoided.

It is based on over 4,000 testimonies, 100,000 documents, takes up over 2,500 pages and will send shockwaves through British society.

Key documents were destroyed


The report concludes that it is "more than likely" that key documents were deliberately destroyed to cover up the gruesome truth that the state injected virus-carrying blood into the veins of thousands of Britons, even though the risk of infection was known.

However, it does not name individual individuals as responsible for this happening. Rather, it was a culture where those who drew attention to and complained about the infection were seen as ungrateful.

A large group of those who were infected received a groundbreaking treatment for haemophilia, a hereditary disease that makes it difficult for the blood to clot. They were treated with factor 8, a mixture of plasma from thousands of donors who came to the UK in the 1970s.

The new treatment was called a "miracle cure" by doctors, and parents were eager to give it to their children, who could have a more normal childhood with the drug.

But the doctors did not tell them that there was a high risk that the children would be infected with HIV and hepatitis C.

"We weren't told about any risks, we were told it was wonderful, and with the treatment, my son would be able to live a normal life," reads a testimony from a mother mentioned in the report.

Inconvenient complaints


Britain was not the only country to experience a large-scale contaminated blood scandal, but it is the only place where no one has been prosecuted and no responsibility has been placed.

The Commission does not currently designate one or more responsible persons who can be prosecuted. It does not make such recommendations. On the other hand, it scrutinizes a deliberate effort to destroy the papers that could prove the authorities' responsibility.

The report describes how there was a clear perception in the Ministry of Health that the patients received the best possible and latest treatment and therefore had no reason to complain that they were infected with viruses.

It was seen as inconvenient that they complained, and it almost seems as if the system thought they should just be grateful for the treatment.

This is despite the fact that they were not told about the risks associated with the treatment at any time.

Scandal inherited


A concrete picture of how long the victims and the bereaved have been looking for answers are the names mentioned in the report.

When it comes to the responsibility of successive governments, the evidence begins with Margaret Thatcher. For some, a historical figure – for the commission, one of several prime ministers who had the opportunity to do something, but did nothing.

Instead, Thatcher presented a line that would be repeated for years: that haemophilia patients receive the best treatment available at the time, and that this was done in good faith.

It was repeated over and over again by prime ministers over the years and is seen as the reason why it was not until 2017 that the commission of inquiry was established.

Another argument in the political system was that it would be a slippery slope to apologize, because where should the line be drawn for what the state should apologize for? The same was true with the replacements – they would be too bulky and too expensive.

Formal apology and compensation on the way


It was not only patients suffering from haemophiliacs who were infected by the contaminated products. It could happen to anyone who received a blood transfusion in the UK.

Thus, thousands of random people became part of the scandal without knowing it.

For the haemophilia patients, their lives were ruined and shortened by the treatment that was supposed to help them. For years, it has cost an incomprehensible pain in their lives and those of their relatives.

For some of them, it may be a relief to read how harsh the report is in its criticism of the system. Not only did key officials know what was going on. They destroyed the documents that could prove that they had a responsibility.

For journalist Cara McGoogan, author of the book "The Poison Line" about the scandal, the language and criticism are harsher and more direct than she expected.

For a number of years, she has spoken to hundreds of those affected.

"I hope the victims will feel that they have finally learned the truth about what happened to them, even though it is incredibly sad to read that it could all have been avoided," she says.

British Prime Minister Rishi Sunak must now try to embrace all these feelings.

Later today, he will appear in the British Parliament and offer a formal and meaningful apology to all those affected. Tomorrow, the government will publish its plans for how those affected will be compensated.

"If he does it in the right way, it can give closure to the victims and the bereaved. But it is clear that they are worried that this government, like the many previous ones, will disappoint them again," says Cara McGoogan.

The ball is now in the court of the current government in Downing Street. The coming days will show whether it manages to deliver the redemption thousands of Britons are longing for.