Infected Blood Scandal in the UK: Tragic History and Recent Developments

1,040 words, 6 minutes read time.

The infected blood scandal remains a tragic chapter in the history of the UK’s National Health Service (NHS). The final report of the U.K.’s infected blood inquiry will be published today. Let’s look at the issue in-depth.

Victims of the infected blood scandal rallied at Westminster yesterday ahead of the release of the final report into the tragedy.

A one-minute silence was held to remember those who lost their lives.

The Hepatitis C Trust asked those attending to wear red to symbolise unity and to bring photos of lost loved ones.

Background

The infected blood scandal refers to a period during the 1970s and 1980s when over 30,000 people in the UK were infected with deadly viruses due to contaminated blood products. These products were administered as part of medical treatments, leading to devastating consequences for many patients.

Hepatitis C and HIV Infections

1. Hepatitis C: Hepatitis C is a viral infection that affects the liver. It is often referred to as the “silent killer” because it may cause few symptoms initially. Early signs include night sweats, brain fog, itchy skin, and fatigue. However, over time, the virus can lead to liver cirrhosis and related cancers, significantly increasing the risk of death.
2. HIV: In addition to hepatitis C, some patients were also infected with HIV (human immunodeficiency virus), which weakens the immune system and can lead to acquired immunodeficiency syndrome (AIDS).

Victims and Impact

• Victims: The majority of those affected were haemophiliacs—individuals with an inherited bleeding disorder. Haemophiliacs often require clotting agents to prevent excessive bleeding.
• Contaminated Blood Products: In the 1970s, a new treatment promised to replace the missing clotting agent by using blood plasma donations. Unfortunately, many of these donations came from high-risk sources.
• Infections: Over 6,000 people with haemophilia and other bleeding disorders received contaminated blood products. Of these, 1,250 were infected with both hepatitis and HIV. Tragically, only 250 of them are still alive today.
• Deaths: More than 3,000 people lost their lives as a result of these infections.

Failures and Delayed Action

• Detection and Awareness: Health officials and NHS staff recognized the fatal potential of hepatitis C as early as 1980. However, formal identification did not occur until 1989. Delays in implementing “look back” programs hindered efforts to trace and treat infected individuals promptly.
• Resource Constraints: Limited NHS funding for hepatitis testing and low awareness further exacerbated the situation. Patients reported feeling patronized and ignored by doctors instead of receiving necessary tests and support.
• Government and NHS Actions: Shockingly, internal documents reveal that the UK government and the NHS actively limited public awareness of the virus to avoid bottlenecks at liver units. Cost concerns took precedence over patient safety.

Recent Developments

• Compensation: Chancellor Jeremy Hunt has announced a £10 billion compensation package for victims of the contaminated blood scandal. This significant pay-out aims to honour the promise made to those affected. 
• Undiagnosed Cases: Recent evidence suggests that nearly 2,000 victims are currently living with undetected hepatitis C as a result of the scandal. Home-testing kits have seen increased demand, emphasizing the urgency of addressing this issue.

Personal Stories

Roger Newman: A Life Altered

• Roger Newman, who lives in Kent, was just 10 years old when doctors informed his parents that his haemophilia could now be treated with a commercial blood product. This product, promoted by the drug industry as a wonder treatment, promised convenience—instead of hospital visits, it could be stored in the fridge and administered at home.
• Contaminated Blood: Unfortunately, these commercial blood factor VIII protein treatments were contaminated with HIV and hepatitis. Roger was first infected with hepatitis B by the blood product, becoming so weak with jaundice that he needed to be carried around by his mother.
• HIV Diagnosis: In 1984, when Roger was 15, he received the devastating news that he had been infected with HIV. He recalls reading an article about AIDS and asking his mother if it referred to him. Her heart-breaking confirmation left him feeling powerless and stigmatized.
• Parental Guilt: Roger reflects on the parents, usually mothers, who unknowingly injected their children with this killer virus. As a parent himself, he emphasizes the unimaginable pain they must have felt¹.

Cherry Nurse: Loss of Brothers

• Cherry Nurse, from Thame, Oxfordshire, tragically lost both her brothers—John (who died in May 1989) and Paul (who died in September 1994)—after they were infected with HIV from the same commercial blood protein treatment. Both were young men when they succumbed to the devastating consequences of contaminated blood products.
• Impact on Families: The loss of loved ones due to the infected blood scandal has torn families apart. Cherry’s brothers were victims of a system that failed to protect them, leaving her with grief and a sense of injustice.
• Advocacy and Support: For those impacted by the scandal, advocacy and support groups play a crucial role. These organizations provide emotional support, raise awareness, and fight for justice on behalf of victims and their families.

Advocacy and Support

• The Hepatitis C Trust: This organization advocates for those affected by hepatitis C, including victims of the infected blood scandal. They provide information, support, and resources for testing and treatment.
• The Haemophilia Society: As a key advocate for people with haemophilia, this society has been at the forefront of seeking truth and justice. Their work aims to prevent similar tragedies in the future.

Moving Forward

• Justice and Change: The release of the final inquiry report marks a pivotal moment in the fight for truth and justice for people with haemophilia. Radical change must result from this inquiry to protect future generations from harm².
• Compensation Scheme: The government is establishing a new body to deliver an infected blood compensation scheme. Funding will be provided once victims are identified and claims are assessed³.

The infected blood scandal remains a painful reminder of the need for transparency, accountability, and compassion in healthcare systems. Let us hope that lessons learned from this tragedy will prevent similar disasters in the future.

For more information and support, consider reaching out to the advocacy groups mentioned above. They are dedicated to helping those impacted by this devastating chapter in medical history.

Report by Pat Harrington.