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A senior government adviser on the safety of blood transfusions has told Sky News he is “kept awake at night” worrying about the possibility of a deadly brain disease being passed from donor to patient.
Professor James Neuberger was speaking after a Sky News investigation into the case of Natalie Bree Bennet and her brother Neil, who both became infected with the potentially deadly brain disease iatrogenic cerebral amyloid angiopathy (ICAA).
Natalie and Neil underwent childhood NHS operations involving infected tissue taken from dead bodies and transplanted into their own.
As a result, Natalie suffers from bleeding on the brain and is at high risk of a fatal stroke and developing Alzheimer’s. Her brother’s condition has deteriorated to the extent that he has now been forced to give up work.
Professor James Neuberger has said the possible transmission of ICAA is ‘of concern’
Speaking to Sky News, Professor Neuberger said: “The ICAA is a much more difficult problem and a much more challenging one, and certainly one that keeps me and my colleagues awake at night.
“At the moment consensus is that this is of concern. We need to make sure that blood transfusion is given only when necessary.
“We need people to understand that blood transfusion carries risk and although as I say blood is very safe in the UK we need to ensure that patients understand that there is a risk.”
Professor Neuberger is the chair of SaBTO, the UK’s Advisory Committee on the Safety of Blood, Tissues and Organs, an independent body that provides advice to UK health ministers and departments – as well as the UK Blood and Transplant services – to ensure the safety of blood, cells, tissues, and organs used for transfusion and transplantation.
ICAA happens when a protein called amyloid builds up in the blood vessels of the brain – making them fragile and more likely to bleed.
Natalie and Neil with their mother
Link between disease and blood transfusions
Usually, it affects people in their 70s and 80s, but in rare cases it can appear much earlier. When it develops after a medical procedure, it’s called iatrogenic CAA (ICAA).
US researchers working with a cohort of patients with the condition between November 2023 and January 2024 established a link between the disease and blood transfusions.
Of 35 patients screened they discovered two (6%) had a clear history of blood transfusion.
Both had received the transfusions as children, decades before showing symptoms. They were diagnosed with CAA much earlier than usual at ages 47 and 57. Both already had severe disease.
If blood transfusions can spread amyloid protein, even rarely, this would have important consequences for blood safety.
A spokesperson for NHS Blood and Transplant said: “Scientists and doctors are much more aware of emerging risks than in the past. The blood safety system is also much more responsive to those risks.
“The current systems in place are more effective in maintaining the safety of the blood supply than ever before. We currently have one of the safest blood supplies in the world.
“We follow the advice of several independent expert committees and bodies including SaBTO, the UK’s Advisory Committee on the Safety of Blood, Tissues and Organs. We’re currently awaiting the outcome of SaBTO’s work into iatrogenic cerebral amyloid angiopathy. SaBTO will usually make recommendations to ministers and it is for ministers to decide whether these recommendations should become guidance.
“The potential risks around iatrogenic cerebral amyloid angiopathy and blood transfusions are unknown. However, it is important to remember that while we have extensive blood safety systems in place, all blood transfusions are not, and never will be, without risk. That is why it is important that all blood transfusions are given only when necessary.”
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