Blood transfusions are a vital medical procedure used to address a multitude of health conditions and emergencies, such as severe anemia, sepsis, trauma, internal bleeding, hemophilia, sickle cell disease, thalassemia, childbirth complications, and more. These transfusions help maintain adequate blood volume and pressure, stabilize patients, and prevent further issues or complications. But for many people in the United Kingdom treated with blood transfusions from the 1970s through the 1990s, this intervention actually caused a significant issue that has resounding impacts to this day: hepatitis C.
Chloe Hayward and Hugh Pym report for the BBC that the UK government and the National Health Service (NHS) failed to intervene and protect patient needs and lives in favor of budgetary benefits. In 1973, a Blood Transfusion Service booklet shared the risks of hepatitis infection from blood transfusions. Hepatitis C was not officially identified until 1989; prior to this, it was known as non-A, non-B hepatitis. However, despite this, doctors knew as early as 1980 that this form of hepatitis could be deadly without treatment. This is because hepatitis C causes progressive liver damage and significantly increases the risk of liver cancer, though many individuals do not know they have hepatitis C or may not show symptoms until the disease has advanced.
As the NHS and government failed to inform people of the risks, invest in testing, or raise awareness of the potential impact of hepatitis C, arguably to protect themselves against negative feedback, an estimated 27,000 individuals were exposed to this virus. 3,000 have died. Given the lack of tracking and tracing of where contaminated blood was given, this number could be even higher.
A Failure to Intervene
It was not until 1995 that the NHS chose to participate in look-back programs or look-back investigations. These investigations are managed by identifying potentially infectious donations and blood components prepared from those donations, documenting what happened to this blood, notifying hospital transfusion laboratories who received contaminated blood and what happened to the blood at the hospitals, notifying patients who are still alive, creating protocols for notification and testifying, and providing test results.
Hayward and Pym believe that an estimated 1,750 people across the UK are living with undiagnosed hepatitis C from contaminated transfusions. If you feel you might be part of this group, you can request a test (UK; Wales) or speak with your physician (Scotland). Unfortunately, given that these transfusions took place decades ago, there is a higher potential that affected individuals already have permanent liver damage.
What is Hepatitis C?
Hepatitis C is a liver disease caused by the hepatitis C virus (HCV). Less than 50% of infected individuals can clear the virus without treatment, but most people develop a chronic infection that can lead to liver disease, liver failure, cancer, or death without treatment. It is spread through contact with infected blood. Symptoms can include jaundice (yellowing of the skin, eyes, and mucous membranes), nausea, appetite loss, fever, muscle aches, easy bruising and bleeding, fatigue, abdominal ascites, itchiness, confusion, weight loss, swelling in the legs, and dark urine.
The Stories of Those Affected by Hepatitis C
Hayward and Pym discuss multiple people across the UK whose lives have been irreparably changed by the NHS’ inability to prioritize patient health and safety. Maureen Arkley, who received multiple blood transfusions during a surgical procedure in 1976, began experiencing severe abdominal pain in 2008. Nobody told her that the surgical procedures could have exposed her to hepatitis C; no testing was done when she finally pursued care. Her daughter Victoria told BBC that Maureen passed away this past February after battling liver cirrhosis and liver cancer.
After experiencing postpartum hemorrhage in 1988, Jo Vincent was given a transfusion and contracted hepatitis C. Although she repeatedly told doctors about her symptoms, she was gaslighted. Doctors failed to consider what she was dealing with and instead wrote her experience off as alcohol abuse or mental health complications. It took 27 years for Jo to receive her hepatitis C diagnosis. Treatment, which includes weeks of oral medication, typically cures 95% of patients with hepatitis C. While Jo was cured of hepatitis C, living with the virus for so long contributed to development of liver cirrhosis that cannot be reversed.
These stories do not exist in a silo; many other people have similar stories or have lost loved ones due to the NHS’ failure. These deaths and the damage done were avoidable and represent a sobering reminder for the healthcare system to put patients over other concerns.