Infected blood: Hundreds of victims living with undetected hepatitis C

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Undiagnosed Hepatitis C Cases Linked to Contaminated Blood Transfusions in the UK

According to a recent analysis, around 1,750 people in the UK are living with an undiagnosed hepatitis C infection after receiving contaminated blood transfusions.

Official documents reviewed by BBC News reveal how the UK government and the National Health Service (NHS) failed to adequately trace those who were at risk of contracting the virus. The documents show that officials slowed down detection rates and even tried 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, 80s, and 90s. The true scale of undiagnosed cases is based on analysis of statistics submitted to the Infected Blood Inquiry by an expert panel, as well as Freedom of Information requests to infected blood support schemes.

Victims Felt Patronized and Ignored

BBC News has uncovered how the UK government and the NHS actively tried to limit the public’s awareness of the virus to avoid “embarrassing bottlenecks” at liver units. Testing was limited due to “resource implications for the NHS.”

An internal government note from the 1990s stated, “Raising awareness poses undoubted difficulties for the NHS. In terms of value for money, there may be better candidates for additional resources.” This document has been added to the Infected Blood Inquiry’s website.

Rather than prioritizing care for those harmed by NHS-provided blood, officials squeezed budgets as cost concerns took precedence over patient safety. Even though hepatitis C was not formally identified until 1989, health officials and NHS staff recognized its potentially fatal nature as early as 1980.

However, they chose to delay “look-back” programs until 1995, which further hampered efforts to track down people who may have been infected, reducing their chances of receiving treatment before permanent liver damage occurred.

As NHS funding for hepatitis remained limited, and awareness low, victims told BBC News that they felt doctors patronized and ignored them instead of offering tests and support.

The Devastating Impact of Hepatitis C

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

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

Many of the victims were haemophiliacs, who were given infected blood products as part of their treatment. However, many thousands more were given transfusions using contaminated blood after accidents, emergencies, or childbirth.

The Hep C Trust says that, on average, two people a month call its helpline following a diagnosis as a result of a blood transfusion more than 30 years ago, and more often than not, they say their prognosis is

Delayed Diagnosis and Dismissive Doctors

The stories of victims, such as Maureen Arkley and Jo Vincent, highlight the delayed diagnosis and dismissive attitudes they faced from healthcare professionals.

Maureen Arkley was diagnosed with cirrhosis of the liver and hepatitis C in 2021, 47 years after receiving multiple blood transfusions in 1976. Despite her medical records indicating the transfusions, she was never contacted by her GP or the NHS about the potential exposure to hepatitis.

Jo Vincent was infected with hepatitis C in 1988 after a postpartum hemorrhage. She soon developed symptoms, but was offered antidepressants and sent to a psychiatrist, with a doctor even suggesting she had an alcohol problem. It wasn’t until 2015 that she was finally diagnosed.

Delayed Tracing and Funding Challenges

The UK government did not begin a “look-back” exercise to find people who may have been infected by contaminated blood transfusions until 1995, despite the fact that the risks of hepatitis from blood transfusions were well-known since the 1970s. Other countries, including the US, started their tracing process years earlier.

Hospital trusts were tasked with looking through medical records, but without funding, their efforts were limited. Some people were traced, but there was a postcode lottery when it came to treatments and counseling.

A year after the exercise began, an official report noted that “increased testing has resource implications for the NHS.” One common treatment, known as Interferon, was “already placing a considerable burden on purchasers.”

In another Department of Health document, it was stated that there was “an obligation to remind health professionals, and people who may have been infected.” However, the document added, “We have so far avoided going down this road because of the resource implications for the NHS. Raising awareness poses undoubted difficulties.”

Today, hepatitis C can be cleared by taking pills for 8-12 weeks, but for many victims, the damage has already been done.

The Infected Blood Inquiry and Ongoing Impacts

For many victims, the UK-wide infected blood inquiry, announced in 2017 after years of campaigning, has come too late. The inquiry took evidence between 2019 and 2023 and will publish its final report on May 20th.

The stories of victims, such as Jane Fitzgerald and Annette’s daughter, highlight the devastating and avoidable consequences of the infected blood scandal. Many lives have been lost, and families have been torn apart by this tragedy.

The infected blood scandal is a sobering reminder of the importance of patient safety, transparency, and prioritizing public health over cost concerns. As the inquiry’s findings are released, it is hoped that lessons will be learned, and measures will be put in place to prevent such a disaster from happening again.

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