Infected blood: hundreds of victims living with undetected hepatitis C

In the UK, around 1,750 people are living with undiagnosed hepatitis C after receiving a transfusion of contaminated blood, according to a BBC analysis.

Official documents, seen by BBC News, reveal how the UK government and NHS have failed to adequately trace those most at risk of contracting the virus.

They show how authorities have slowed detection rates and even sought to keep public awareness of the virus low.

Up to 27,000 people were exposed to hepatitis C after receiving blood transfusions in the 1970s, 1980s and 1990s.

The true scale of undiagnosed cases is based on the BBC’s analysis of statistics submitted to the Infected Blood Inquiry by a panel of experts, as well as Freedom of Information requests to support programs to infected blood.

BBC News can reveal for the first time how the UK government and NHS have actively tried to limit public awareness of the virus to avoid embarrassing ‘bottlenecks’ in liver units. Testing has been limited due to “resource implications for the NHS”.

“Awareness raising undoubtedly poses difficulties for the NHS,” says an internal government memo from the 1990s. “In terms of value for money, there may be better candidates for additional resources.” The document has been added to the inquiry’s website.

Rather than prioritizing the care of those harmed by blood supplied by the NHS, authorities have slashed budgets as cost concerns have taken precedence over patient safety.

Although it was not officially identified until 1989, health officials and NHS staff recognized that this form of hepatitis could be fatal as early as 1980.

But they chose to delay “lookback” programs until 1995, which further hampered efforts to trace people who may have been infected, reducing their chances of receiving treatment before permanent liver damage. are not caused.

As NHS funding for hepatitis remained limited and awareness was low, victims told BBC News they felt patronized by doctors and ignored instead of offered testing and support.

Known as the “silent killer,” hepatitis C may cause few symptoms at first, with early signs including night sweats, brain fog, itchy skin, and fatigue. But every year a person carries the virus, their risk of dying from liver cirrhosis and related cancers increases.

The infected blood scandal is one of the biggest treatment disasters in the history of the NHS: 3,000 people infected with HIV and hepatitis C after receiving contaminated blood products died.

Most of the victims were hemophiliacs, who had been given infected blood products as part of their treatment.

But thousands more have received transfusions of contaminated blood following accidents, emergencies or childbirth.

The Hep C Trust says that on average two people a month call its helpline following a diagnosis resulting from a blood transfusion more than 30 years ago. Most often, they say their prognosis is poor.

Victoria’s mother, Maureen Arkley, was diagnosed with liver cirrhosis and hepatitis C in September last year.

The following month, it was clear that she was suffering from incurable liver cancer.

Maureen underwent an operation in 1976 involving multiple blood transfusions. They were noted in her medical record, but at no time was she contacted by her GP or anyone in the NHS about the fact that she might have been exposed to hepatitis.

Years later, in 2008, she started having abdominal pain. Tests were finally carried out in 2010, including an ultrasound, but the consultant concluded that everything was fine. She has not been tested for hepatitis C.

Maureen died in February, five months after diagnosis and 47 years after receiving the blood transfusion that infected her.

“The end was absolutely horrible, she weighed less than four stone when she died,” says Victoria. She says her mother felt there was a stigma attached to the virus. “She was very ashamed and hid it.

“I work in social services, but we just haven’t made the connection between the possibility that someone who has received a blood transfusion could be infected with hepatitis C. Where was the public health campaign? Why the Didn’t the doctor test it?

“They knew she had received transfusions, but no one tested her. I’m so angry,” Victoria says.

In 1973, a Blood Transfusion Service booklet was published, warning of the risks of hepatitis. Over the next 20 years, it became common knowledge that blood transfusions carried a risk of infecting hepatitis patients.

Despite this, it was not until 1995 that the British government launched a retrospective study aimed at identifying people who may have been infected by contaminated blood transfusions decades earlier.

Other countries, including the United States, began this process years ago.

Hospital trusts were responsible for reviewing medical records, but without funding efforts were limited. Some people were found, but there was a postal lottery for treatment and counseling.

A year into the financial year, an official report stated that “increased testing had resource implications for the NHS”. One common treatment – ​​known as interferon – “already imposed a considerable burden on buyers.”

In another document from the Ministry of Health, submitted to the public inquiry, there is “an obligation to remind health professionals and people likely to have been infected”.

But he adds: “We have so far avoided going down this route because of the resource implications for the NHS. Raising awareness definitely poses challenges.”

Today, hepatitis C can be cured by taking pills for 8 to 12 weeks.

The majority (64%) of people infected with hepatitis C through blood transfusion were women. Stories of transfusions during childbirth and following ectopic pregnancies have been heard repeatedly by the BBC. Memories of dismissive doctors were recurring.

Jo Vincent was infected with hepatitis C in 1988, after receiving a transfusion following a postpartum hemorrhage. She quickly developed symptoms, but was offered antidepressants and sent to a psychiatrist. A doctor suggested she had a drinking problem.

Over the years, Jo was told that her night sweats were due to the menopause. The brain fog was caused by hormones. “The doctors just misled me – they wouldn’t listen to me.”

Jo was finally diagnosed in 2015. After a six-week course of two tablets a day, she cleared the virus. But the damage was done: Jo suffers from cirrhosis of the liver and now undergoes six-monthly check-ups to detect the first signs of cancer.

Jane Fitzgerald died at the age of 53 from hepatitis C-related illnesses.

In 1978, she received a single unit of blood after surgery following an ectopic pregnancy. Over the next decades, she raised her two children and enjoyed family vacations and gatherings with friends.

But as the new millennium dawned, she felt tired, had trouble swallowing and had a sore throat. Finally, in 2004, blood tests were done and he was diagnosed with hepatitis C.

In search of the best treatment, Jane paid for trips to Paris so she could scan equipment the NHS had not invested in.

During her time in the NHS she attended clinics with drug addicts and alcoholics.

As her liver function began to deteriorate, Jane suffered from ascites – a buildup of fluid in her abdomen – which required emptying every 10 days.

She once showed up for an appointment and after having to wait all day, she was sent home. “That night his abdomen ruptured from the pressure,” his son, Ronan, told the BBC. Jane died of liver cancer in November 2015.

“I’m still so angry. She was given a unit of blood and at no time did they try to find her or warn her that she was suffering from this deadly disease,” he says.

Annette received a blood transfusion in 1985 after an ectopic pregnancy.

It wasn’t until she moved to Australia in the 1990s and was pregnant with her second child that Annette discovered she had hepatitis C. A few days later, she learned the terrible news that his young daughter was also infected.

The couple underwent long courses of interferon – a drug known to have several physical and mental impacts on patients.

“I lost my hair, I was down to seven kilos and I was suicidal. It was a horrible drug,” says Annette. Over the next decade, she underwent two more treatments and was finally cured of her hepatitis C in 2018.

She now suffers from cirrhosis of the liver and varicose veins – an enlargement of blood vessels in the esophagus that makes swallowing difficult. She is still alive, unlike her daughter.

After failing to clear the virus, Annette’s daughter became pregnant. A few hours after delivery, bleeding was detected. Doctors discovered she had cancer.

Annette’s daughter died shortly after her 28th birthday. She left behind her 16-month-old baby.

For many victims, the UK-wide investigation into infected blood came too late. Announced in 2017, after years of campaigning with victims, it collected testimonies between 2019 and 2023 and will publish its final report on May 20.

A government spokesperson said the infected blood scandal was “an appalling tragedy that should never have happened” and that a new body would be created to pay compensation once victims and claims had been resolved. evaluated.