CJD warning to haemophiliacs after donor tests positive
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Your support makes all the difference.All haemophiliacs in Scotland and Northern Ireland have been warned they might be at risk of variant Creutzfeldt-Jakob disease (vCJD), the human form of BSE, because a person who donated blood twice in the 1980s later developed the disease.
The donated blood was pooled with blood from other donors and used to make the clotting agents factor VIII and IX, which are given regularly to haemophiliacs. Letters sent out earlier this week advised them of the theoretical risk of contracting vCJD and suggested they contact their local centre if they wished to find out whether they received tainted blood.
The Scottish Office initially declined to release the number of people at risk, citing patient confidentiality, but Malcolm Chisholm, Scotland's Health Minister, later disclosed that some 300 people given factor VIII or IX between 1987 and 1989 might have received blood products from the donor.
Details of the disease in the donor first became known in November 2001 but haemophiliacs were not informed because advice from the CJD clinical incidents panel on what to do in cases of blood contamination was unclear. The view of the panel was that patients should not be informed where the risk was minimal and it spelt out in which situations patients should be told, such as when patients had been operated on with contaminated surgical instruments.
The Scottish Office said yesterday that "definitive advice on the management of incidents involving clotting factor concentrates and what patients should be told" had still not been published.
Professor Ian Franklin, medical director of the Scottish National Blood Transfusion Service, said: "There is no evidence anywhere in the world that either classic or vCJD has been transmitted by blood transfusion or use of blood products between humans."
Professor Franklin said plasma had been imported from the United States and Germany for the past four years as a precaution against vCJD for the manufacture of products such as immunoglobulin, albumin and clotting factors.
Scottish Tories criticised the delay in revealing the problem, saying if there had been a cover-up it was "unforgivable". Mary Scanlon, the Conservatives' health spokeswoman, said: "Haemophiliacs have suffered enough. For them to find out that there is an additional worry is bad enough but to learn this information has been known ... will add to their worries." Mr Chisholm said he learnt of the incident earlier this month. "I took the view that the patients should be informed and that's what happened," he said.
The Scottish National Party said the disclosure was "devastating news" for haemophiliacs, after previous tainted blood infections involving HIV and hepatitis C. Health executives at Belfast City Hospital's haemophilia centre said "a very small number" of patients in Northern Ireland had been exposed to the Scottish batch.
Professor Franklin said the decision not to tell patients was based on evidence suggesting the risk of contacting CJD from tainted blood was minimal."The decision on not to notify patients was a UK-wide one as experts were uncertain about any risk," he said.
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