All Sam Rushby remembers about his family are fleeting memories of hospital hallways and waiting rooms.
In 1994, when he was just two years old, he lost his mother to AIDS. His father died of the disease a year later at Liverpool Royal Infirmary.
His younger sister had also contracted HIV, a new virus that was untreatable at the time, and had died.
“My family was literally torn apart and taken away from me,” he told BBC Panorama in his first interview.
“It feels like it’s been disposed of and it’s over.”
image source, family photo
Sam’s father Gary was one of more than 1,200 people who became infected with HIV as part of the blood-borne scandal, most after being given drugs made from American blood plasma in the late 1970s and 1980s. Ta.
A long-running public inquiry into what has been described as the worst treatment disaster in NHS history is preparing to report its findings.
One of the key areas the agency is investigating is whether it acted too slowly at the time.
Now BBC Panorama has seen evidence that in the early 1980s the British Embassy in Washington warned the British government about the risk of AIDS from contaminated blood.
After meeting with members of the U.S. AIDS Task Force, embassy officials wrote a five-page memo to senior officials at the Department of Health.
This warning, one of several, was issued 10 years before Sam was born.
Jim Reid meets with the families of several children infected with HIV and suffering from bleeding disorders to discuss their campaign for justice and what they hope to see from the investigation.
Sam, now 32, began learning the truth when he was a teenager.
His father, Gary, was born with hemophilia, a genetic disorder that damages the blood’s ability to clot. Although hemophilia most often affects men, women can carry the hemophilia gene and pass it on.
In the late 1970s, Gary began new treatments aimed at radically improving his life.
Factor VIII was marketed as a miracle drug. Patients simply take a bottle of white powder from the refrigerator, mix it with distilled water and inject themselves.
The bleeding stops and, for the first time in history, hemophiliacs are able to live more normal lives.
However, those patients would later learn that an entire batch of the new treatment was contaminated with HIV and hepatitis C.
About two-thirds of people infected with HIV in the 1980s developed AIDS and died before modern antiretroviral drugs were available.
When Sam was finally told by his grandparents, he struggled to understand what had happened to his family.
“I couldn’t believe it, I couldn’t believe it,” he says. “If I can’t recover, why did this happen?”
In the early 1980s, the UK could not keep up with demand for factor VIII, which is made by pooling or mixing the plasma of thousands of private donors.
Instead, the treatment was shipped from the United States.
Blood donations have always been voluntary in the UK, but in the US, drug companies are allowed to pay for plasma in cash.
High-risk groups, from prisoners to drug users, had clear financial incentives to donate blood and could lie about their medical histories.
Evidence uncovered by activists and confirmed by an ongoing public inquiry into a wide-ranging contaminated blood scandal shows that a series of clear warnings were sent to the British government as the risks posed by AIDS became known. Showing.
In May 1983, Dr. Spence Galbraith, director of the UK’s Center for Communicable Disease Surveillance, wrote to Dr. Ian Field, chief medical officer at the Department of Health, to suspend all blood products in the United States until the risk of infection was eliminated. The appeal was that its use should be discontinued. AIDS has been “solved.”
The letter from the British Embassy in Washington, now seen by Panorama, was also sent to Dr. Field just one month later, on June 28, 1983.
In it, embassy officials describe a meeting with representatives of the U.S. Centers for Disease Control and Prevention’s AIDS Task Force.
Transmission of HIV through blood was discussed, he wrote. Hemophiliacs were “most at risk” from the “questionable habits” of some American paid blood donors and the mixing of thousands of those donations to create factor VIII.
Tainted Blood, an organization representing hundreds of survivors and their families, said the letter showed an “astonishing level of awareness and detail” about the risks.
However, this and other warnings were not addressed. NHS patients continued to receive untreated factor VIII imported from the US until at least 1985.
Many of those involved in the decisions in the 1980s are now deceased, including Dr Ian Field.
In 1983, knowledge about HIV and AIDS was in its infancy.
At the time, Health Department officials said calls to discontinue American Factor VIII were premature and did not take into account the risks to hemophilia patients by removing a major source of treatment.
image source, family photo
Sam said his father didn’t know he had HIV for years.
Gary unknowingly passed the virus on to his wife Leslie. She then gave birth to her daughter Abby, but she was born HIV positive and died at just four months old.
Leslie became pregnant again and in 1992 Sam arrived, this time testing negative for HIV.
But just two years later, Leslie died of an AIDS-related illness, and just a year later, her husband also passed away.
“Sadly, I literally have no memory of them, just a few pictures,” Sam says. “It’s always a heart-breaking feeling and wondering what it would have been like to grow up.”
Sam was raised by his grandparents, who initially told him that his father and mother had died of cancer and strokes.
It was in his early teens that he began to find out what really happened, but due to the stigma against AIDS, he kept the details secret because “teenagers can be mean.” It is said that
“I’ve always struggled with anxiety and depression. Losing your mom and dad so young would make you anxious,” he says.
“But later I found out why, and it added to the suffering.”
Sam is one of hundreds of children who lost their parents in the scandal. To date, no one has received compensation from the government.
Between 1970 and 1991, a total of more than 30,000 NHS patients were infected with HIV and hepatitis C through contaminated blood products such as factor VIII and IX, or through blood transfusions after surgery, treatment or delivery. Did.
In other countries, from France to Japan, medical malpractice investigations were completed years ago. In some cases, doctors, politicians, and other officials faced criminal charges.
Campaigners say the scandal has attracted unprecedented attention in Britain.
A closed-door investigation in 2009, funded entirely by donations, had no real powers, and another investigation in Scotland in 2015 was branded a “scam” by victims and their families.
In 2017, under political pressure, then Prime Minister Theresa May ordered a UK-wide public inquiry.
Led by former High Court judge Sir Brian Langstaff, it had powers to compel witnesses to give evidence under oath and order the publication of documents.
After a series of delays, his final report is scheduled to be submitted on May 20th.
image source, family photo
A survey for the study found that 380 of the 1,250 people with bleeding disorders infected with HIV were children at the time.
Many families also had to deal with the stigma of what was then an untreatable disease.
Sarah Jane’s younger brother, Colt, contracted HIV and died in 1992 at the age of 10. She said her family, originally from Plymouth, had to move three times to escape abuse from locals.
“We were shunned and talked about. Colt didn’t have any friends because no one wanted to play with him,” she says.
“Friends and neighbors became distant, fearful and disapproving.”
In September 1985, a Hampshire primary school made national news headlines when the parents of a young hemophiliac told the teacher they had been tested for HIV+.
Other families pulled their children out of the classroom and did not allow them back until AIDS experts were sent in to properly explain the risks.
image source, family photo
The boy at the center of the media storm was just nine years old and anonymous at the time. But now we can name him 48-year-old Peter Adlam.
“What I remember is that I didn’t want to be caught on camera outside the school gates,” he told BBC Panorama in his first interview.
“I tried to fit in as much as possible with the other kids. When you’re a kid, you’re supposed to think you’re immortal and you’re going to live forever, but I was starting to realize that wasn’t going to happen.”
Peter developed serious health problems related to HIV in 1996, including three bouts of pneumonia. At one point, his parents were told they might only have weeks to live.
A new HIV drug arrived in time and saved his life, but he still has to deal with multiple health issues.
“Up until that point, I had no idea the year 2000 would come, so it was very bleak and I didn’t have much hope,” he says.
“I’ve seen people my age living their lives and I couldn’t do that. I don’t have a career or travel. I can’t imagine what my life would have been like without it.” ”
In August 2022, the government agreed to pay a first-ever interim compensation of £100,000 to around 4,000 scandal survivors and their families.
Ministers have also said they plan to extend coverage to the parents and children of infected people, including Sam Rushby, and set up a final compensation scheme.
However, no clear schedule has yet been set for making the payments, and the total cost could reach billions of pounds.
“This was a terrible tragedy that should never have happened. It is clear that justice must be served quickly,” the government told Panorama in a statement.
“This includes the creation of a new agency to implement the Infected Blood Compensation Scheme, which will have all the funding needed to identify victims, assess claims and then provide compensation. .
“We will continue to listen carefully to our community as we address this horrific scandal.”
